The Needham Family

2012-02-01T21:19:00.001-05:00

And Piper is a free woman. Well, free-ish. She will still be closely monitored at the clinic every other day but apart from that she is on her own schedule and doing her own thing. I wish I could say we can get back to living a normal life but the fact is that she is not able to go anywhere but our apartment here at the Ronald McDonald house and to the clinic. And even in the journey between the two she is required to wear a mask and has learned to keep her hands to herself...thankfully, she is super obedient about these two things.

Piper was incredibly ready to leave yesterday. She happily put on the new outfit I snagged from the clearance rack at Target and requested her mask and out the door we went. The drive to the Ronald McDonald house was sweet as she pointed out the birds, the trucks and all the little things she has missed after 44 days of being isolated from every aspect of the outside world. She's never been so excited to be buckled into a carseat.

It was 8:30 at night before the home health nurse came and showed me how to hook Piper up to her night time fluids and her IV gancyclovier. I cannot think of the time I was more tired than last night after attempting to remember all the details and schedules that are now my sole responsibility. All of this is more than a little overwhelming while juggling her medications, creams and fluids while still encouraging her to both eat and drink throughout the day. So while I am thrilled to be on our own, I have a renewed sense of appreciation for the nurses who do all the hard work throughout each day.

Today was Pipers first outpatient but clinic visit and it went well. She is still showing many signs of stranger anxiety not that that is much of a surprise. Thankfully, this visit was fairly simple and the only thing to bother her was the removal of her NG tube...we will be attempting to have her eat enough to maintain and if not by next week we will restart the feeds at night. Today she snacked all day long but time will tell whether it was enough or not. Her liquid intake is very low, thus the overnight fluids, do please pray she begins to feel thirsty and that she will restart the drinking of her pediasure as she did before transplant. Pipers liver numbers were elevated today but it is supposed to be a common problem with the diflucan she is on do that has been stopped for a little while. Her cyclosporine levels looked great so we will continue at the dose she is on now.

Please continue to pray for Pipers body to be producing donor cells as well as her fluid intake. And rest...please pray for some for both of us.

Day 33

2012-01-30T23:12:00.002-05:00

And we are out of here (almost). Tomorrow will mark 44 days of Piper being impatient here at Egleston...this is not her longest hospitalization to date but it was by far the most mentally taxing one. So many unknowns and so many fears from the first day we walked thought those doors that said Bone Marrow Transplant Unit and tomorrow we will walk right back out of them...a little more hopeful but still very much in the midst of fighting for our girl and her beautiful life.

Chad is currently wiped out with either the Flu or a doozy of a sinus infection so it's up to me and my mom to get this little room unloaded and all of Pipers treasures moved to our apartment around the corner. Then I am off to Walmart to set us up with hand soap, toilet paper and Lysol wipes as well as outfitting the kitchen with enough food for us...remember Piper is still not allowed to go anywhere except the clinic and the apartment. She will be receiving overnight fluids because she is still not wanting to drink much and we have the supplies ready for NG feeds should she change her mind about eating. Piper is on 7 different medications to be given around the clock to ward off infections, virus, graft vs host and a rejection of the new cells...so much is going on in her little body and she still looks amazing.

Please pray for us as we transition. This will be wonderful to sleep without the hourly presence of nurses and doctors and therapist and yet, it will be lonely as Piper and I will have only each other to keep company on a daily basis...I fear my play- doh making skills are waning and I no longer am as much fun as I was when more rested.

As we begin the transition from hospital to Ronald McDonald apartment we begin to anticipate the move home. This is going to require our rental home to be inspected for anything that would be a contaminate for Piper. Hopefully, there will be nothing of concern but if there is we will need to make some decisions that are better planned out than made on a whim. And always we desire Pipers body to produce mass amounts of donor cells of which are strong and will demolish any leukemia cells that have dared to survive chemo, radiation and transplant. Little to no side effects would be lovely to add to the miracle that I am feverntly praying God to do.

Day 32

2012-01-30T00:21:00.005-05:00

This afternoon Paxten Pearson passed away. The emotions that are currently racing though my head are exhausting me...all emotions that I am certain Libby and Blake have far surpassed. Mainly at this moment I am blindingly aware of how blessed we are. There have been few and far between times in which I have looked at my little life and felt the lucky ones but tonight I do.

I acknowledge that and mainly, I praise the Lord for his faithfulness

And I also acknowledge that Gods faithfulness is still around Paxtens death. We may not see it and we definitely do not understand it but it is there. Gods amazing and unfailing faithfulness is what gives root to the Hope that each of us at some point cling to. And I so pray this for this greiving family...

In the midst of a hard and emotional day for this mommy, my Piper continues to improve. She is tolerating her overnight ng feeds and is steadily eating more each day. Because she still isn't so great at communication, we had to guess that she was nauseous and began her on small doses of zofran which has helped her appetite and energy immensely. At this point Piper is off the I've pole all day except for a two hour infusion and for her overnight feeds. She has been taken off of all antibiotics (except preventative ones) as well as tpn and lipids. She's walking around as much as her little legs can and though she is not walking independently as she had just begun to before transplant, she has happily walked 3 or4 steps at a time into my arms today. Because things continue to look beautiful we are scheduled for a Tuesday discharge and will be going around the corner to the Ronald McDonald apartment for another month or two.

One specific prayer request I have is for Pipers bloodwork. At day 30 she had labs drawn to be sent off and to have her DNA inspected... We are hoping and praying for this to reveal 100% donor cells with none of Pipers.. The test results will take 2 weeks to get back and that will be the first step towards seeing if this transplant was indeed a success. The second step will be a lumbar aspirate to look at her narrow. We will hope and pray for the same 100% donor cells to be apparent in her marrow as well. This will be done around day 60.

Last week during rounds, Dr.Haight was talking survival rates and she told me that post transplant a patient has as much of a chance of mortality from the side effects as she has of a relapse. This is all providing Piper shows donor cells and the transplant is a success. So much of this battle is actually waiting. It's doing really horrible things and then sitting back and waiting to see if they worked. Id be lying if I said I was not tired of it all but as Piper continues to cross milestones I will continue to love on her right across the next one.

Flashback (Family Pictures October 2011)

2012-01-27T22:50:00.008-05:00

Sometimes really, really, really bad circumstances bring people in your life that, well...rock it.

All the better if this someone can help save your two year olds life, pour love and attention on your six year old, talk you down off of a shelf when overwhelmed, laugh at and with your spouse and then, when all this persons responsibilites to my little family are said and done for a season...

To meet with us and to document the simple fact that we love each other.

And we love you back sweet friend.

Flashback (St.Mtn.Park Mini Vacation pt.3)

2012-01-27T22:35:00.005-05:00

The last day consisted of riding the duck boat, having the girls hair done by the Hair Fairy and finishing off with lunch and an good attempt at a 3d movie. Piper did not dig this 3d movie so she and I wandered and explored and Chad and Linley laughed and got sprayed for fun.

The best part about a vacation an hour away is that once the girls began the melting down portion of the day, we just loaded them up and the slept all the way home. Chad and I were able to chat and semi rest and mainly, be thankful for all the rest and memories the weekend made for us.

Flashback (St.Mtn.Park Mini Vacation pt.2)

2012-01-27T22:13:00.005-05:00

St. Mountain Park activities when I was a kid was composed of hiking the mountain, playing at the beach/streams, The Laser Show in the summer and if you were high living you could pay to ride the sky lift to the top of the mountain. (we were not high living, by the way.)

Now though, they have a whole village packed with expensive and fun things for your kids to do and buy. So we did. There was a ropes course, there was a playbarn, there was that fancy skylife and then when we (really, just mommy and daddy) were totally exhausted we grabbed snacks and headed to the area my mom used to bring us when we were kids.

That was my favorite part of the weekend. Linley climbed and skipped along the walls and rocks just like I did when I was six and Piper loved the water...even pushing her walker straight in after her big sister.

Flashback (St. Mtn. Park Mini Vacation pt.1)

2012-01-27T21:41:00.006-05:00

Back in October of 2011, Chad and I got an itch to run away with the girls. Of course, this was all in the midst of Pipers relapse and subsequent chemotherapy and that may have played a large part in our desire to get the heck out of dodge and pretend our world wasn't falling apart.

Or maybe we just had a great desire to settle in and love on each other...so much was unknown and so much was so scary and despite those two very real things, we just wanted to be close. So we relied on the generosity of one who loves us very much and sent us to St. Mountain Park for a weekend. We chose that location because it was away from our daily hustle and bustle but also because it still kept us close to the comforts of Pipers doctors and such...plus, who in their right mind likes to drive more than two hours or so with young children and no in-car DVD player?

Nobody. Us included.

So St. Mountain it was and it was wonderful.

Piper had begun losing her hair but not to the point where it was noticeable and Linley had not yet felt the effects of (again) being the big sister to a little sister of whom so much revolves around. To an outsider we were just a little touristy family hanging out...and that was nice.

This is going to be a 3 post mamaba-jamba because there are some truly beautiful and special pictures we caught in these three days and that I would be remiss to leave out. These are just ones of the girls getting settled in and their silly selves wrestling and then playing some serious checkers.

Day 28

2012-01-25T23:19:00.001-05:00

...Is over and done with. As the infamous Charlie Sheen has said, my Piper is most definitely "winning". And it's a beautiful thing to watch.

Pipers surgery this morning went smoothly. They removed the wonky double line and replaced it with a single lumen line. This time, instead of having it exit her body in the middle of her chest, they have it come out closer to her ribs...the surgeon made my day talking about how he prefers to place the line there because it will scar her less for when she is a teen wearing a bathing suit or a bride walking down the aisle. Any talk about my Piper growing up always makes me tear up... I ache for the possibility of a future. After returning from surgery and being given morphine there for the pain, Piper stayed awake for an hour then promptly fell back asleep. Once she began waking from her typical 2 hour nap she was given the benedryl for her IVIG which just made her all the more tired and back to sleep she went...totaling a 6 hour nap today. And she was still ready for bed at 10:00 tonight, as usual.

They have finished one of Pipers antibiotics and plan to end a second tomorrow. Her cyclosporine is being tolerated well and her fevers have stayed away. In a huge answer to prayer, Pipers CMV copies have dropped from 22,400 to 12,900 in one week. And just as wonderful, we discovered today that Pipers reaction to the CMV sensitive IVIG has lessened enough to have it given without those immune suppressing steroids. Tonight they are beginning slow rate ng feeds to help her body get the calories she needs but to allow her to wean even more from the tpn and lipids.

And now for the very best news today. Dr. Haight said that provided Piper continues on the path she is on, we will be discharging early next week sometime.

This. Made. My. Day.

So now we pray her body remains as strong as it is now and that we are indeed able to move on to the second stage of transplant...life at the Ronald McDonald house where on the weekends we can live like a family, all four of us under one roof.

"beautiful things"

2012-01-24T22:56:00.001-05:00

Day 27.

Piper, proving me correct like the good little girl she is, is keeping the doctors and such on their toes. I told then she would and indeed, she is.

Yesterday Pipers fevers were continuing to run about 38.8 and though they were responding to Tylenol, they were frequent enough to warrant a CT scan to rule out fungus somewhere in her body...so this morning Piper and I were awoken at 8am to have this done with sedation. We got downstairs and they informed us it would be with contrast so back upstairs we go to have a NG tube placed. No two year old willingly drinks 10 oz of chalky contrast. So that runs for an hour and a half and then we wait an hour and she is taken back downstairs and the CT scan is done with no problems. Her nurse was able to come and do a port reaccess and CVL dressing change while Piper was sedated so that was a good surprise. They also chose to place an IV in her right hand because Pipers CVL is being wonky. And because Pipers CVL is being so very wonky she is having it pulled tomorrow and they are replacing it with a single lumen CVL...though I would love to have it pulled and only use her port, it is not advisable because they need multiple access spots for blood draws, antibiotics and TPN. One of her medications that she takes by mouth (cyclosporine) has to be monitored a few times weekly from a line that has never been used to administer it...does that make sense? So tomorrow Piper will have another surgery to have all this done. When you ask? Well, apparently "sometime between mid morning and mid afternoon". And that's how I found out that surgeons and cable men are really one and the same.

Eating is about the same. She continues to play and when they allowed her to be unattached to the IV pole for the first time since December 18th, she was loving it and did 3 laps around the halls with a smile under her face mask. We will have a ways to go to get her caught up with walking and movements but I am certain with time and some encouragement she will remember what she used to be able to do and will do that plus more. She has been fever free for 24 hours and should this stay the same it is one more step closer to discharging...and seeing my sweet girls together again.

All on all, more good days are happening. When I asked what Pipers counts were doing today during rounds, Dr. Haight said " beautiful things" and that has been resounding though my head all afternoon...I pray it is so and for always.

Because Piper can hardly go anywhere or do anything, she gets really excited to see familiar faces. She loves seeing Beth, Alyssa and even waves at Dr. Newton... these are all friends from Scottish Rite that she recognizes. But since being here for 6 weeks, she has learned to love a few new faces like Audra and Britney. And her favorite is The Fairy Godmother. The Fairy Godmother is a volunteer who has been delivering books and smiles for years at Egleston and I must say that I too, look forward to her sweet visits. She must have a soft spot for Piper because I know Piper has one for her.

Day 26

2012-01-23T23:21:00.003-05:00

First off, did you see my girl Piper in the last post? That was 24 days post transplant and she looks, acts and is simply amazing.

Here we are at day 26. Piper has engrafted, hopefully with total donor cells. She is showing a small interest in food so her TPN and lipids are being lowered each day. Tomorrow at 6am she will begin taking cyclosporine orally verses through her IV. She continues on her bevy of antibiotics and antivirals as her body continues to fight off fevers....albeit only that, no vitals concerns. Tomorrow she is going to be having a ct scan with contrast to rule out fungus somewhere causing the fevers though Dr. Haight seems to feel it is a CVL problem. It is not out of the question for it to have been contaminated when it broke last week...Surprise! Surprise! Thankfully it seems that the assortment of antibiotics she is already on are keeping whatever it is from becoming a full on infection as her cultures continue to be clean and clear. At this point they are trying to decide whether to pull her CVL and use only her port or keep the CVL or pull the CVL and replace it...we should have a decision tomorrow. We should also have results from Pipers CMV blood work within the next day or so. Pipers little lips and hands and feet are incredibly dry and are peeling...we are keeping them moisturized but it's tricky keeping a two year olds little hands away from their peeling lips. Thankfully, she loved her some chap-stick and applies it liberally...often veering from her mouth to her ears and such.

We are getting closer. With the prayer that this transplant was a success and that her little body is filled with donor cells, Piper is on the path to recovery and being cancer free. There are few milestones on a transplant journey, as so many children differ on their treatment and success rate but still it is good ticking the days off and praying we are ticking leukemia off the charts once and for all.

In addition to praying for my Piper, please pray for the rest of my family also. I have literally only been trading off keys and daughters with Chad for over a month now and we are missing each other. A million thanks to my mom for helping us work in a lunch date last week...I was please to know that we can still recognize each other and converse like a married couple. Also pray for Linley. She is as much of a trooper as her sister and is missing our normal family dynamics probably more. And Chad as he balances being Mr. Mom and his school schedule.

Paxten Pearson, our sweet little infant leukemia friend is still in the ICU in Kansas City. Each day her mom updates us with Paxtens progress and each day is filled with ups and downs and worries and hope...I find myself often with them on my mind. Please pray for them and follow Paxtens story if you would like www.caringbridge.org/visit/paxtenpearson.

Day by day we are making this...I am confident that "the Joy of the Lord is my (only) strength" as we are all weary in the flesh but chose Joy over being downtrodden and depressed. It's the way we will roll, of you will.

There is no space for that in my heart when I rely on God and His infinite wisdom and presence, despite our daily circumstances.

Day +24

2012-01-22T01:27:00.003-05:00

Piper is feeling much better and acting like the little girl we brought to this hospital. After sleeping through the night last night, she woke up happy and was in a playful mood most of the day. Lots of giggling and playing. We got up and out of the room for a few hours today, but her little legs still seem to be weak from the two weeks or so that she hasn't been able to get down and do much. She has been eating some. Not much,but some. The Dr. has talked about cutting her TPN and lipids back some in the next few days hoping that that will stimulate her appetite. Her mouth sores seem to be gone and she is at least comfortable putting food in her mouth. Tomorrow they may cut off the continuous drip of pain meds, but leave the button for her in case something should happen and she were in pain.
All in all her doctor is happy with how she is doing. She is producing white blood cells and her body is holding it's own with her platelets. She is still getting neupogen, which helps her body to produce these cells and when they cut that out we could see a significant drop in her white blood count. When we were first admitted we were told that three days in a row of an ANC over 500 is considered en-graftment. This is only half the truth though. Yes, it is en-graftment, but she could be en-grafted with donor cells, which is what we want to happen, or she could have en-grated with her own cells again. Dr. Chiang seems fairly confident she is en-grafted with the donor cells because we did see some signs of what he called en-graftment syndrome. That would be the rash she had over the last couple of weeks. We are more than hopeful and a somewhat confident that she is growing donor cells, but there is no way to tell just yet. Her blood will be tested sometime around Day +30 and will take two weeks to get back.
In other news, PJ has been running fevers. That is one of the things on the list keeping us from getting out of here and into the Ronald McDonald House.
She hadn't run a fever while I was here until about 6p this evening and she has run another since then.
Piper is doing great for what she has been through. She is still a happy little girl and such a sweetheart. I will close this post out with a picture I took of her today and edited with Instagram. It is hard to get her to smile because she makes these funny faces where she squinches her nose and eyes and you can't tell if she is smiling or not. So, this one is super cute for the simple fact she is smiling. This is representative of her demeanor today despite fever and weak little legs. I am sure I have forgotten a lot of stuff, but her fevers and and en-graftment of donor cells are things we ask for continued prayer in. Thank you to all who have brought us meals, sent cards, and just remembered Piper in your prayers.

Chad

Day +22

2012-01-19T21:47:00.005-05:00

You know that kissable soft skin that babies have? Once they get to be about two or so they get tougher and rougher and the soft little skin is harder to find and kiss on...one thing that leukemia has given me is a perpetually smooth two year old. And not just the great chubby arms or the rolls on her bum but her sweet little head. Perhaps other two year olds also have this soft and smooth dome flesh but you don't get to know since your kid has hair...I do get to know and I love this sweet bald, soft and kissable head.

Ask any cancerfied parent and they will tell you that the lack of hair on their child's head is terrifying. There's no lying to yourself when your child hasn't a hair on their body. But it is a strong terrified because you know that having no hair means there is a hopeful chance of having no cancer...so it's worth it. And you get used to it...and you forget about it until someone tells you how their own one year old also was a late hair bloomer. If its a good day you chuckle and mentally trip her but if it's a bad day you trip her and mentally chuckle. Kidding.

No really, I AM kidding.

And I really do love Pipers bald head. When I first walked down the hall after she relapsed and had her head shaved, I won't lie. I broke down. Too much of her little life has been bald and fighting. I'm tired of it. But to tonight when I was cuddled up to her and her head was right under my chin and right in reach of my lips...I kissed it and told her I loved her and prayed silently that this was the last season of baldness in her life. And even so, when I see her bald head now I am reminded of being in the midst of winning the battle which really is much better than being at the end of fighting a losing battle so fight on, sweet Piper.

As it is, she is 22 days post transplant. Things are looking up. Things have been hard and scary but Piper has been blessed so far and that is all I have room in my mental capacity to think/worry/ dwell on....other options remain options unless I am forced to deal with them. Denial is my most favorite coping mechanism and it has suited me well the last month or two years or so.

Piper continues to grow stronger. After a few rough days of steroids she is back to her sweet, silly and even sleepy self. Thankfully the lowering dose of fentanyl is going without problems and we are not only seeing her sleep better at night but she is napping well during the day. Piper has begun eating small bits here and there and even went so far ad to eat about 10 bites of pizza and a few nibbles of ice cream for dinner tonight...on top of a few chips and a few sips of my smoothie throughout the day. They plan to slow her TPN down beginning next week so here's hoping she will continue this trend of slowly increasing appetite. She is still having a few low grade fevers but is fighting them off on her own without Tylenol and her rash is all but gone. Because of the daily dose of Neupogen, she has a white cell count of 1.8 today and her little face is beginning to heal up and look less like she was in a bar fight. The rise in white cells so quickly can cause joint pain so we are watching for that. They have changed her cyclosporine medication to run for two hours every twelve hours instead of continually and this is the first step towards weaning her from IV medications to oral medications which are necessary to be discharged.

The only blimp on this normal radar happened last night. Pipers CVL was constantly being occluded (kinked and slowed) and the nurses were having a hard time getting it to flush sometimes. No big deal, that happens...but the nurse pushed one time and she was able to flush and we all smiled and I went to the room with Piper where we curled up and she played on the iPad while curled up against me and I read a few chapters in my book. All was quiet and then I reached over her head to put my arm across her chest and pull her closer and she was covered in blood. On her nightgown. On the iPad. On her blanket...everywhere. I immediately pinched her line and called the nurse and we discovered it has "popped" or torn and was leaking big time. Now, when Piper had a CVL at her diagnosis it tore on two different occasions and both times were in the middle of the night and both times it was treated very seriously and quickly. Not so much here. Apparently this hospital doesn't have a repair team and there wasn't one available to fix it at 11:00 at night...so the nurse put a sterile bandage over it and kept it hemostat clamped all night. To say I was unhappy with this was a gross understatement. I was livid...Piper cannot leave her room without a mask, she is only allowed to eat certain foods and she can only have guest with impeccable immune systems and yet somehow,someone was okay with her line being semi exposed for twelve entire hours.

When the guy from surgery came at 11:30 this morning, he repaired it at her bedside with no problems. Well, Piper hated it and had to be given Versed to calm down but the repair went smoothly and will be available to be used after twenty-four hours. I did file a complaint, not in a huffy fashion ( believe it or not, friends) but calmly and emphatically. I am still concerned that the line was contaminated and there is no way to find out without her developing problems. Moreover I am concerned that the hospital has no policy for CVL tears or breaks at all times, risking children who are already in sterile environments and needing this to be available at all times. Hopefully I was heard and hopefully this will be remedied in the near future...for other kiddos.

I think that's all. Piper and I both are getting a little stir crazy. Two year olds are not designed for small rooms and face masks and we eagerly look forward to discharging and having more freedom and to begin dreaming of a future that involves playgrounds and preschools and all the lovely germs that Pipers new immune system can valiantly fight off.

So let's go Piper....keep fighting the good fight.

Day 20

2012-01-17T21:41:00.005-05:00

I am currently sitting on my couch waiting on Chad to get home from a men's meeting at church before I can run back the hospital and relieve my mom. Shes been there all day and I am certain she is ready to get home and relax...so this will be short. Or semi short.

You know, as in " cancer is a doozy and wrought with fuss and bother" kind of short.

Pipers fevers ran high all weekend until Dr. Chiang began her on steroids to combat that rash she has had...four doses over 48hours and the girl was a hot mess. But she has been fever free since then and her rash, which is assumed to be gvhd, is almost gone. Before beginning her on steroids, they drew clean blood work for her CMV levels which have come back at 22,000. And that was before the steroids and the immune suppression that they have on her so we are looking at more CMV even still. The Infectious Disease doctors have been called in and the transplant team has done a pow wow to get a game plan going. No one is concerned that Piper has not totally engrafted yet but still, we need to see some counts or this CMV is going to be out of control and will have some serious effects. At this time they are going to begin Piper on IV Neupogen to boost counts as well as keeping her on 2 different types of CMV antiviral medications. Both can be heavy on her organs so they will be watched and we need prayers for effectiveness and no side effects.

Because of the steroids, Piper had a few hours of very slow heart rates. They did an EKG to rule out problems and damages and she looks great so it's been chalked up to the mega doses of steroids...she has never been a friend of steroids, that girl. Her heart perked right up when the steroids began to leave her system. Really, everything began to perk up when the steroids wore off.

She is sleeping a lot. The process to wean her from the fentanyl was slowed due to the very miserable thing she was on steroids but hopefully she will continue to tolerate a lower dose each day and still go back to her cheerful self. Whether its the funk her body is feeling, the lower doses of fentanyl or the sheer exhaustion catching up to her, but Piper is definitely doing a lot of resting. She is also walking around some and playing so she has every right to be one tired little two year old. One tired and crazy tough two year old, no doubt.

Pipers counts from today:

Hgb: 11.0
WBC: .84
Platelet: 19

All well and good.

Still asking for her milk but not interested in drinking much...still, an interest is good and we will build on that. Her weight was up a little bit last night so she was given lasix to bring it down to normal so as to not cause her body any unneeded stress. Still plenty of issues that could become problematic but still under control at least for now.

Yesterday marked 4 weeks here at Egelston and we are feeling it. We all miss each other dearly though I'm reminded how tough my Linley is when she tells me that we have to be strong and be like a team. And we do, she is a smart girl. (She gets it from her mother.) They tell you when you admit that the average stay is 4-6 weeks until discharging and staying at the apartment at Ronald McDonald house...so best case scenario I am hoping to be out of here in 2 weeks...not that anyone has told us that, it's just my optimistic and tired self shooting out idea and hopes. We will see as each day rolls on and Piper becomes stronger, not weaker, please God.

Day +18

2012-01-16T03:11:00.003-05:00

I sent Sus home last night for a few days of some much needed rest. Since Linley and I are both out of school Monday she gets to spend a little extra time with her mommy.

Piper has been feeling better this week than she did last week. Her little body is starting to produce some white blood cells. That is good, but we are not close to the end yet. They rise a little then drop again and then rise a little more and drop again. The good news is that she is producing some cells. She has been running high fevers over night and today, but the doctors are not overly concerned right now. We are just keeping an eye on her. Basically, no one is going to worry about anything until there is something to worry about. So, even with fevers approaching 104 F, if here blood cultures don't grow any bacteria nothing changes. This is the case with everything right now. Sit and wait.

Today Piper got up and walked with me for a little while around the unit and then spiked a fever and slept for almost 4 hours. After her nap she played happily with markers and her baby dolls. She is doing really good right now. Always a sweet girl, just a bit grumpy at times. We are almost three weeks post transplant and we can not wait to get this kid out of this hospital and to the Ronald McDonald House where we can all sleep under one roof. The girls are missing each other A LOT right now. Each one is asking about the other and Piper always wants to look at pictures of "ninney" on my phone. Our iPads and Facetime have been such a HUGE blessing in that regard. It is not the same, but a decent substitution for the girls to see each other and blow kisses and tel each other night night.

All in all Piper is strong right now. She has asked for her mile for the first time in over a week, so I am hopeful her mouth and throat are feeling a bit better and maybe her appetite will return. Other than that, nothing much new here. We sit and wait.

Chad

Monster Jam

2012-01-16T02:48:00.005-05:00

If you don't know who Dennis Anderson and Grave Digger are you're probably not a friend of mine. And you if don't enjoy supercharged engines in 15 ft. tall trucks flying 30-40 feet in the air just to roll 'em over and tear 'em up we probably wouldn't have to good of a time hanging out together :)
Saturday night I took Linley to her first Monster Jam. Of course my uber safe little princess was more worried about the drivers safety at times than she was about having fun and enjoying what I like to call "rastlin' on wheels." She can be quoted as saying "ya'll are cheering and they could be really hurt daddy" and when a truck turned over during freestyle, "ya'll are cheering for nothing."
She still had fun though and she did cheer for the pink truck, Madusa, and the puppy dog, Monster Mutt, during the races. Now, Grace Digger is a legend, in fact there are two Grace Diggers now and the second one is driven by the son of the first and ironically named....Grave Digger The Legend, but Linley was not to impressed with Grave Digger. I guess screaming skulls with glowing red eyes are a little scary to a kiddo, but I was trying to explain that that is the way it has always been...she didn't care. Until Grave Digger tore the body off his truck in freestyle and continued to launch it through the air with sparks flying, rear end glowing, and a man in a black helmet bouncing around like a rag doll but never letting out of the gas. That got her attention. By the end of the show she was loving it. She got a Madusa pennant to hang on the wall at home and we hung around for about an hour extra and got to meet the legend himself Dennis Anderson, who is a super nice and charismatic guy who just so happens to drive a truck with a picture of death on the side and Linley was a little more than intimidated by.
We also met other drivers and got a pic with the driver of El Toro Loco. I can't remember his name, but I know he is only 21 years old and living the dream.

Chad

Day 16

2012-01-14T00:48:00.001-05:00

Piper continues to have fevers which go frighteningly high. Strangely though she is still pretty perky and happy and not bothered by it and her vitals stay normal. Just to rule out something fungal, she had an CT scan done today which revealed healthy and fungus free lungs...very good news. Piper also impressed me by obeying me so well and staying still during her CT scan and not needing to be sedated. I was not expecting that but I was very proud of her little self wrapped up there on the machine and watching me.
The fevers can be one of two things now ( unless something shows up in her bloodwork that hasn't in the last 36hours). It can just be a sign of engraftment and is totally normal or it can be a side effect of worsening CMV numbers. Because she is having no other problems, Dr.Chiang is not yet concerned. I'm not either because I learned a long time ago that there are very real and present things to worry about so I will worry about CMV if and when it produces problems.
Piper has been asking for water a lot today as well as eating those little Gerber puffs... They melt in her mouth so I figured I would start there until her mouth is sore free. They do not want to to replaced the NG tube and hope that she will begin eating and drinking at least minimally soon.
Counts continue to wiggle, not jump. And her rash looks the same if not better. I am hoping and praying it stays stable if indeed it is graft vs host (which they think it is) because they treat graft vs host with steroids and that is the last thing she needs with having already activated CMV.

It dawned on me today how much I am actually enjoying this season. And no I am not drinking to excess at the moment. There is definitely a worry and anxiety that comes from being in this setting and being apart from your entire family but this is proving to be a special time for myself and Piper. Thanks to the time and generosity of friends and family and loving strangers I don't stress about Chad and Linley at home and an able to simply focus on being with Piper. It's not unlike those first few weeks home with a newborn who relies solely on you and is fantastically needy and yet...somehow you miss it when they do sleep through the night and when they do accomplish tasks without you.
I pray fervently that my time with Piper is filled with all the moments and dreams I had for her when I rocked her so shortly after her birth but I fully appreciate this (supposed) to be heavy time for the joy that is is at this moment. If I don't have another 20 years to hold her... I will even more love these sleepless nights and slow days.
But I still do plead and ache with God for her healing and for life and for a future...nothing will stop me from that no matter how sweet the moment.

Flashback (Happy Re-Birthday Piper)

2012-01-14T00:19:00.001-05:00

The big day has come and gone...call it Transplant Day, call it Day O or call it her Re-birthday but I'm hoping to call it a miracle and the beginning of the rest of a healthy and happy life for Piper.

It was just as simple and anti climatic as I had desired. A bone marrow transplant is not an invasive procedure but rather similar to a blood transfusion. This means no surgery or sedation and she was able to play, snack and sleep like normal through out the entire 5 hours infusion. Piper was watched very carefully throughout and even for a few hours after...praise God, all of her vitals stayed normal and she had no nausea or vomiting or reactions in the least bit.

Piper Jean Needham, you are amazing, I pray daily for your future. I pray hourly for your blessings and I pray each little moment for you to simply have life...someday I pray you will live it abundantly. Until then we will carry you, we will love you and ache for your cure. Twenty-nine months ago I eagerly labored for this sweet child in the first place. There was much fanfare and much rejoicing over her delivery. God willing this date will be just as pivotal as her birthday. One date brought her into my arms and the other helped keep her here.

Flashback ( December 27,2011)

2012-01-13T23:30:00.001-05:00

This was just mommy and daddy time with Linley. We had some free passes to the Georgia Aquarium and used the ever amazing Nana to hang with Piper while we spent some one on one time with our favorite six year old. She was the perfect age and loved it... It would have been a wee bit hectic taking a non walking two year old into that place but Linley is always our chill and observant kiddo ... Which served her well in this place. Linleys favorites were the otters and and the penguins while Chad and I just about fell asleep in the last display. This part is a huge atrium style fish tank where you just sit in the dimmed room and watch sharks and turtles and other sealife coast by you. Absolutely amazing.

First we ate at Johnny Rockets for burgersy, bacon cheese fries and some amazing milkshakes. So good.

Flashback (first week at Egleston)

2012-01-13T23:04:00.001-05:00

Busy was what this week was. Piper was occupied each day with radiation, chemo, different therapy sessions and just being a typical two year old in a very atypical setting.
Very few side effects meant only more good times with our girl.

Flashback (prepping for transplant)

2012-01-13T22:48:00.001-05:00

... And by prepping I mean doing anything we could to keep our minds off of the inevitable. The Needham crew was to be dismantled for a few weeks only to be placed back together again once Piper had begun to heal. This is still our heartfelt prayer as we close the gap on a month apart...
But in this sweet time we lived. It was good. Chad and Linley were both out of school and Piper and I were happy to have then home with us to play and run around. There was much staying up late eating ice cream, enjoying FaceTime with Nana and Gpa, sleeping with mommy and daddy, making messy, messy and still yummy teachers gifts, experimenting with new make up kits and of course, the many happy hours spent with a fancy new dollhouse and play kitchen. Chad and I spent a lot of time watching the girls and smiling...you know, like normal parents do but without the worried twitch that we seemed to have acquired.

Flashback ( Merry Needham Christmas)

2012-01-12T23:58:00.001-05:00

We intended for our little family Christmas to be the big one...that the actual day we would have less gifts and less smiles. Thankfully we were wrong but we still enjoyed doing our own thing anyways. Linleys main gift was a doll house and Pipers was a play kitchen. Chad as usual got the honors of putting then together but unlike previous ( and real) Christmases there was no midnight mass to watch. Poor fellow toiled though and it was a labor of love and hope... That soon Piper would be home for good to play with hers and that Linley would know we are indeed hearing her little hearts desires.

Flashback (Merry Needham Christmas Eve)

2012-01-12T23:45:00.001-05:00

I was given an ipad/blogger tip today from a kid I used to babysit way long ago. I'd love to take credit for this kids brains but I am afraid all I did was take him for walks and read to him so it must be his parents fault he's a smartie. (Either way, thanks a million Joseph)

Because hopefully I should now be able to add pictures to my posts, I am going to be doing a few flashbacks. This is my way of keeping track of the sweet way we are doing life so if you only want an update on Piper just ignore any "flashback" posts. You would be missing out big time though.

Because we knew Piper would be inpatient and that Linley would not be allowed to visit at Christmas, we did our own thing. This is the Merry Needham Christmas Eve that we did and it was so sweet to see the girls wearing those matching jammies. This was the first Christmas we have had that felt complete and good and right...relapse and transplant a'coming be damned.

Day 15

2012-01-12T23:38:00.001-05:00

Piper is still rocking this. A lot more smiles and walking. Even some time spent in the playroom earlier. The doctors are happy with how she looks and feels and we will begin the weaning of the fentanyl tomorrow. Tonight she began to run a fever... Each time she runs a fever they draw bloodwork to look for viruses or bacteria or any other funk that may be residing there. Because she is still on a plethora of antibiotics from the fevers last week they feel like she is covered unless something shows up. The doctors are pleased with how well she is doing thus far and the only concern continues to be the CMV which we have done all that can be done and next weeks test shall show if it was a help or not.
Pipers white count is at .26. Not much but she is at least going the right direction. If by day 21 we don't see a jump then they will begin Neupogen to get things rolling along though I don't think this is a concern at the moment just an FYI to me for how things could go.

Boring is good around here...I'll take it.

Day 14

2012-01-11T23:11:00.005-05:00

Another good day.

Another chance to enjoy Piper and not live fearfully.

Another chance to think and dream of more good days to come.

Piper is doing well...so well. Last night she slept all the way from 11:00pm until 10:00am, and even when she would awaken she was tired enough to go back to sleep without needing me to hold and rock her. I asked them to keep her fentanyl dose at the same rate she runs during the day and chose to forgo the benedryl and hope for the best. And we got it...her pain pump has the option of a "boost" when she seems in more pain but that has not been used in over 24 hours...we are planning to begin the weaning off process tomorrow...this is not a quick process as her body will continue to ache and hurt especially as her counts begin to recover. She still napped from 2:00 until 6:00 this evening which explains why she is still awake watching VeggieTales and why I caved in to a Peppermint Mocha at 7:00 tonight...bedtime will be a while.

The steroid creams seem to be helping as her rash is all gone on her head and her back and arms and the portions on her legs and torso are beginning to fade away. Her poor little face looks like she has been in a bar fight as each bump and scratch she gets just sort of festers there under a layer of bacitracin. She is very red on her cheeks but it's thought to be simply as irritation to the saliva and such...no concern but lots of triple antibiotic cream. She coughs often and has some white in her mouth so they are treating for thrush but her lungs continue to sound clear. All of her bodily functions continue to stay within a normal range, her weight included.

The only concern we still have is her CMV levels. Pipers CMV copies jumped from 100 to 3,100 in the course of 7 days...this is not shocking but it is reason to be proactive. She receives a specific CMV sensitive antibody every other week and this has been bumped to weekly. Because Piper has an allergic reaction to IVIG she is given Tylenol, benedryl and solu-medrol prior to each infusion which has proven effective. Unfortunately this is very much a catch-22 because the same solu-medrol steroid which keeps her from having a reaction is the same steroid which will keep her immune system compressed which is exactly how CMV thrives. So Dr. Chiang chose to give her a half of the dose of solu-medrol and hope it would still keep Piper calm...and it did. This is very good news as it allows Piper to have all that her body needs to fight off any more CMV copies. I imagine they will attempt a smaller dose next week and hope for the same results. She will continue to have labs drawn to check the CMV levels each Monday so we have results within 48 hours usually...let's pray she will hold steady or even better, knock the levels down some.

Pipers white count is at .2 but slow and steady is how she rolls. Until she has higher white cells she will not have an decipherable ANC...and she will need to have an ANC of 500 to be considered engrafted. Hopefully we are staying ahead of the CMV enough that her ANC will develop in time to really keep it at bay. Remember please, engraftment only means that her body is beginning to recuperate...we still don't know that she is producing donor cells or her own cells. And either way, she has a long way to go before she is out of cautions way with both life threatening infections and the chance of leukemia still around or relapsing. Right now Piper is playing with her play camera in the bed and dancing to music and giggling. She walked twice around the nurses station and while she was definitely shaky she did it and she continued to play while standing in the room when we returned. She is loving the $3.48 shoes I picked up for her the other day and then chose to wear a shirt of mine to bed...she is definitely a two year old despite all that she has been through and all that she struggles with.

She amazes me, even when she is bossing me around.

( Oh, and I would love to be posting pictures while I am posting words but I cannot for the life of me figure out how to load pictures on my iPad...I have the thingamajig that allows me to download them from the camera SD card but for some reason it wont allow me to attach them to a post...even if I have taken the pictures with the very iPad I am attempting to post on....I don't get it but let me know if anyone does.)

Day 13

2012-01-10T22:15:00.003-05:00

Piper continues to rock this. Her white count dipped a little to .14 today but that is common as her body works to welcome these new donor cells. Her rash is looking better though she looks like a greased pig from all the steroid creams being plastered upon her. Still no diaper rashes and still some pain when urinating. No fevers. And no eating or drinking though she did take two sips of water today...maybe more tomorrow. Her saliva has decreased except I still notice a lot when she is asleep and on my chest when she is snoozing there. Our only immediate concern right now is that her CMV levels have jumped to 3,100. This virus is brutal and we came into this transplant knowing it was possible for this to cause complications and concern....at this point it is more of a reserved concern and they plan to give Piper a type of immunoglobulin specific to CMV on Thursday as well as continuing her daily dose of antiviral. Hopefully she will engraft and will produce what is necessary before this becomes out of control. She has laughed and played and danced and giggled...but not napped. I am beginning to feel confidant in my assumption that the fentanyl is causing her to not sleep...each time they up her dose in hopes she will be comfortable, it backfires and she fights off sleep until she crashes usually around 6am and then she sleeps deeply on my chest until noon. And naps are a way far away thing...she hasn't napped since last week for me. Thank God my mom came today and pushed me out the door and towards Barnes and Nobles and caffeine.

I mentioned a few weeks ago about our friend Paxten who also is post transplant for relapsed infant leukemia. Yesterday things took a severe turn for the worse and she is currently in the ICU with multiple complications. My heart aches for the entire family, this all happened very quickly and as you can imagine they are exhausted and worried. Please pray for Libby, Blake and sweet Paxten...pray for healing and peace.

This is what we fight against...the complications as well as the cancer. And each family is so very tired and scrapping by on every little dose of hope thrown their way. Just pray for this family as well as my Piper. And be thankful if your biggest worry today was making dinner and balancing homework and bedtimes and such...because that sounds pretty wonderful to me.

White cells

2012-01-09T20:20:00.006-05:00

...we've got some! This mornings blood work showed a white cell count of .16. If Piper has white cells and a ANC over 500 for 3 days in a row she is considered engrafted. Of course, more times than not the patient will kind of bounce along for a few days before consistently producing healthy cells.

Today was a long but good day. Piper was in good spirits and even participated in physical therapy for the better part of an hour. She has been fever free for over 24 hours now and we hope this trend continues. She's been given a steroid ointment for her entire body just to err on the side of caution regarding her rash. Because she is beginning the process of engraftment they are hopeful that it is only something called " engraftment rash" but there is always the high potential of graft vs host which is a whole different and dangerous ball game. Her antibiotics have been switched up some as well because she is having some severe pain when urinating. They think it is her urethra being inflamed which can cause burning since her urine is still clear and shows no sign of uti. Because of a very rough night last night Dr. Chiang has upped her overnight fentanyl dose...she will remain at the same dose during the day but hopefully this increase at night will give her some much needed rest and relief. I would not complain if I were to be able to sleep better either.

So here's to full engraftment, a good nights sleep and the perfect healing in every way for Miss Piper.

2012-01-08T21:54:00.002-05:00

Each time I race from one home to another, I cry. Usually its an exhausted whimper, sometimes its a frantic sob but it is always rejuvenating. I have my worship music on and my windows down and me and my Camry just roll down hwy 78...knowing that my pace will change as soon as I hug the neck of whichever girl I am barreling towards. And I am always, always, always ready to see either blue eyed girl...by the time I have spent s night or two or five away from one of them I more than ready to give them my undivided attention.

Which is why the commute between each girl is so very therapeutic. Crying, in whichever manner, is so good for my soul.

So after almost 48 busy hours with Linley I am back here with miss Piper. Linley and I went to her basketball game, a birthday party, a family dinner, church today, the grocery store and even managed to run two loads of laundry and paint our toes. Chad and Piper apparently did a lot of cuddling and watching laughing babies on YouTube. Like a Chad said last night, things with Piper remain within the normal parameters of a transplant patient. She has had two fevers today but still nothing is growing on her cultures so there is talk of doing a CT just to rule out anything fungal. She has developed a red rash on the better part of her body which doesn't seem to bother her but sure scared me when I laid eyes on her. Oh yeah, and she pulled her NG tube out early this morning in a fit of rage. I imagine it was hurting her already sore throat so out it came. Because she is at the (hopefully) worst portion of this transplant process, her mouth and throat and GI tract is covered with sores and ulcers so it was decided to keep it out until she heals up some. She will continue to have TPN and lipids to sustain her. Sleep continues to be sporadic although the higher dose of Fentanyl is helping with pain and discomfort she still cannot seem to settle herself much to sleep solidly for long periods of time.

Still no sign of those lovely healing white cell but we are crossing into the earliest possible time they could make an appearance. Hopefully when they show their pretty little heads they will also bring the donors cells with them but please leave the leukemia ones at the curb....they have been a part of my sweet Piper for long enough.

Day +10

2012-01-08T00:56:00.003-05:00

Piper is doing relatively well. Still lots of mucositis and she wasn't very active today, but if you hit the pain pump enough she will get comfortable enough to play with and laugh at daddy. She still doesn't have any white counts, but that is normal right now. She ran a fever around 4:30a Saturday morning, but after a little Tylenol it stayed away the rest of the day. Piper has gotten into a routine of waking up between 5 & 6 a wanting to be held. She is starting to let me lay down and hold her tight which is so much easier to gather back to sleep.

I am sure when Sus gets here tomorrow she will perk up and you all will have pictures of Piper standing, smiling and playing. She likes to make daddy look like a liar. She is still being sweet, just very clingy because she has been in pain and we are keeping her drugged. She does have her little moments of turdness, like telling the nurses bye-bye as soon as they walk in the door or slapping syringes out of their hands,but that is rare and only in times of real meltdowns.

I know I do not make this as readable and enjoyable as Sus does, but this is how she has been for the last several days. Still doing good, but definitely in some pain that is manageable with meds. Still sweet and beautiful.

Chad

Day 8

2012-01-05T22:53:00.005-05:00

Another day down. We had a visit with Dr. Haight, who was the oncologist whom we first met on this transplant journey. She has been in the clinic the last few weeks but popped in to say hello, which I enjoyed.. She has a calm and realistically optimistic manner that I can appreciate and she was very happy to see how well Piper is doing. Many of the concerns they have for a child beginning transplant are not apparent in Piper..not that we are by any means on the way to recovery yet but as she said, each day we can get by with Piper doing well is a day closer to engraftment and that lovely road to healing.

And today was a good day. Sleep continues to be a struggle for her...no less than 4 times last night I was up with her which is not uncommon but for some reason Piper is insistent that we stand and hold her....and that is exhausting. I worked today on other options to help her continue to feel secure and to allow Chad and I to still sleep a little. So far she is enjoying the whole " sleeping on mommy's chest like an infant" position, which is better than the alternative. We also elected to have Benadryl given to her prior to bedtime in an effort to get a good, restful night sleep for her. We shall see tomorrow.

After a slow and sleepy morning Piper perked up considerably and even chose to get out of bed. This is the first time in 5 days that her feet have touched the ground. And she did a little walking around and a lot of playing with her play kitchen and dolls while standing. While she still refuses anything by mouth to eat or drink she willingly takes her oral meds. No fevers. No counts. It was apparent that Piper needed a blood transfusion when she had not one, but three black out episodes before 2:00 pm. For some reason whenever Pipers hemoglobin gets below 9.5 or do, she struggles to catch her breathe when crying, resulting in fainting. This is frightening of course, but easily remedied by her transfusion. Score one for me being " an attentive parent" according to Dr. Chang, although it was actually a nurse at Scottish Rite who found the connection between low hemoglobin and fainting spells. ...many thanks to her indeed!

Both my mom and dad came to visit today and I am ever so glad to have them walking right along with my family as support. I cannot fathom doing this without their selfless help and prayers. And not only them, but each of you who read, pray, mail us notes, visit, hug, send meals and love on the four of us. It means the world to me even though I am sinfully bad at thank you notes...that and less coca-cola are my two New Years resolutions so perhaps that will improve. So a million thanks even when I forget to say it.

Day 7

2012-01-04T21:44:00.004-05:00

I'm back. I went home Monday night to spend some time with Linley and get her prepped for school resuming. Also, to walk around barefoot, enjoy the fresh air and to do laundry. All things that I miss massively by being here at the hospital. All things that hopefully are around the corner...closer and closer each day.

After a few rough days and an increase in the fentanyl, Piper has perked up today. From Saturday until this morning we saw much more mucositis, a lot less sleeping, high fevers and a general feeling of exhaustion and frustration. Both for Piper and for Chad and I. Today Piper is feeling a little more perky. She has given us a few sweet smiles and has sung a few sweet songs. Don't get me wrong, she is still very much dealing with the side effects of radiation, chemo and of course this transplant. Her ANC is still down, as it should be. The cultures from Mondays fever has not grown anything so that is a huge sigh of relief although she continues to randomly have low grade ones. And surprisingly, Pipers CMV levels have actually gone down to 100 from 700 last week... I was hoping to just keep them from sky rocketing until her counts began to recover...but this was a good shock to us. After receiving platelets Sunday night, the amount of blood we are seeing in her saliva is less and if you really want to know more than you need, her stools have gone from almost black to the normal yellowy loose mess we know and love. Liver and kidney functions are staying within the normal range and she responded well to the dose of Lasix given a few days ago to keep the extra fluid off her little body. Sleep continues to be a struggle as she wakes often in the night as well as the fact that she has gotten on the typical hospital schedule of staying up majorly late and sleeping until 11:00 the next day and napping sporadically at best. This would not be nearly the issue if Chad and I were on the same wonky schedule but we are still very much running back and forth between Piper and this life and Linley and her life.

So that's where things are. Piper is a trooper. I though, am at a loss as to whether I want her to get more side effects as evidence of sorts that this is working or whether to count my blessings that she is handling this on the good side of ugly. This whole wait and see method is incredibly difficult for a woman like me who would much rather be the one making choices and bossing things around than the one who is hoping and praying for the best while having nothing to do with the details. Keeping things out of my control is incredibly frustrating but I am learning a lot about trusting God, trusting Chad and trusting the doctors and nurses who have been put in this place for Piper.

Moving into crappy-ville

2012-01-01T22:38:00.005-05:00

Day 4

And the mucositis is here. If I was not able to tell solely by the phlegmy coughing, I would see for sure in the copious amount of mucous she is spitting up...and today it's tinged with blood, another sure sign of open sores down in her mouth and throat. Her eating has stopped all together though every so often she will attempt a nibble of this or that. The good thing ( is there ever a good thing about bloody phlegm???) is that this is totally normal. As I have said before, Piper will get much worse before those life saving cells kick it into high gear and start making her stronger than ever before. We just have to go through crappy-ville to get there.

Piper is officially neutropenic, meaning she has no white cells distinguishable. This (again) is the goal but it puts her at am extremely high risk for infection and we are being ever more diligent about bathing, mouth rinses and hand washing. Piper has not had much energy today though she did have time to pout when we ran out of dresses and nightgowns this morning and I was only able to offer her t-shirts...she really is the typical two year old despite how she may appear. Napping was elusive as each time she would fall asleep she would begin choking and that would waken her. Not shockingly she is no fan of the mouth suction but it is ready and waiting should she find It more a help than a bother. Piper has been given a dose of morphine tonight to allow her to rest and we will take each day and pain as it comes. Around here nobody looks at you like your nuts for requesting lortab or morphine, in fact they prefer you begin giving it at the first sign of pain rather than allowing these little bodies to work harder than necessary.

It seems she may be working on a fever but it's kind of dancing between the real deal and playing around. If she does spike in the night they will draw blood work and begin antibiotics while waiting results. And she is in need of platelets so that will be given sometimes after the midnight labs are read. All in all its been a decent day. Some smiles and silliness and attitude, yet still many signs that Piper is slowing down.

Seven years ago when I first married into the Needham family I learned of the southern tradition of eating a specific New Years meal...collard greens (money), pork (moving forward), cornbread (happiness), black eyed peas (good luck) and peach cobbler (health) for dessert. Each year that we were around them, I would chow down on his Granny's amazing cooking and laugh about the seriousness some take tradition. Well, this year I had NONE of the above foods for dinner and I am hoping this will be the year I see SOME of the above blessings...reverse psychology from this tired and yet still very optimistic woman.

Happy New Year

2011-12-31T23:54:00.002-05:00

Almost there. Only 5 more minutes until the calendar switches to 2012 and we wish 2011 good bye. Is it normal to feel nostalgic? I'm not a nostalgic woman by nature but there is something poignant about a new year and the options it brings when one is lying in bed with their two year old quietly snoring. And if your sweet two year old is fighting for her life and being brought to the brink in order to do so, well...the nostalgia kicks in. Tears do too but we ration those out pretty well around here.

So many things happened in this family in 2011.

Piper was super ill with cmv, she spent 7 weeks in inpatient rehab learning to reuse the muscles necessary to sit up, she completed treatment, she began taking steps, she relapsed, she began taking more steps, she learned how to be normal and she is currently in the midst of what we hope to be a life saving none marrow transplant.

Linley had a rollar skating 6 th birthday party, she began to grow her hair out for Locks of Love, she conqured the monkey bars, she learned to swim and dive both, she stopped wearing only skirts, she read 75 books for the summertime reading program at the library and she asked Jesus to come live in her wonderful little heart.

Chad and I have moved yet again for the 6th time in our 7 years of marriage and for the 3rd time since Pipers diagnosis two years ago. Chad continues to take as many classes as he can while balancing Piper and Linley and even sometimes me. He worked the overnight shift often this summer and learned quickly how to draw the curtains and sleep in the middle of the day. We joined a church and chose to commit our family to a grace filled community whom have adopted us and loved us. We have learned that one vehicle is suffice for our little family. We have learned that we are jerks to each other when life gets bumpy. I have found out that old race car seats can be made into an office chair and Chad has learned that I can easily rearrange a room in the time it takes him to go to the grocery store with the girls. I've learned that having 4 or 5 hours of sleep a night can be just fine, thanks to my dad and those genes I inherited from him. And Chad has learned that he can not cope on the schedule he had as a teenager...but who of us can?

Mostly I think our family has learned that Gods grace truly is sufficient for me...and us.

Next year I pray for big miracles and small alike. I want health. I want simplicity. I want another child. I want to know hear the realization that we made this solely by Gods grace to constantly ring in my head. How else will I appreciate any of the blessings I know will come my way in the next 365 days and more if I don't compare them to the dark days that God has already carried me through?

So thank you sweet Jesus for you this year. For being real. And holding me up while I await brighter days...

+2

2011-12-31T00:47:00.003-05:00

It's my night with Linley at the Ronald McDonald house here in Atlanta. Because both her and Chad are out of class for the Christmas season we are doing a lot of trading off of the girls...it's good that way, no one becomes too spent, hungry or bored. Time with each girl is so different but still so special. Have I mentioned what amazing girls I have lately? Or today? They really are.

Piper continues to do well. We are seeing her slow down as far as energy resulting in some mega naps. She is not eating but thankfully the NG tube and the TPN are intended just for this reason. While I don't really consider it throwing up, she is bringing up a lot of clear, thick mucous which we assume are just signs of the mucositis beginning in the GI tract. She has her nightly oatmeal bath, she does her mouth rises four times a day and she loves when we put lotion on her little legs and body. Each diaper change is done using mineral oil and cloth instead of alcohol bases baby wipes and each diaper change also ends with liberal slathering of sensi-care. All of these steps are taken to prevent problems with bacteria and/ or germs...our biggest fear until she engrafts and we see white cells here for the fighting.

Linley is also doing well. I know she is hearing a lot of what is being said over her head when she asks how Pipers "electricity" (radiation) is going. Tonight we were able to visit with one of my favorite oncology moms and her daughter Lindsay who is +36(????) of her own bone marrow transplant. They are currently staying here at the Ronald McDonald house in one of the transplant apartments and it was good for Linley to go see how that looked and what we have planned for Piper when she engrafts and is able to leave the unit. Plus, Lindsay is just an amazingly cool 12 year old who happens to share Linleys birthday so I feel they are destined to be friends, much like myself and Sara.

Tomorrow I plan to sleep in with Linley and then we will do the clean up, pack up and check out here. I'm thinking maybe a movie or a park for the afternoon and then after Piper is done napping I will relieve Chad and he and Linley will head home for the weekend and for Linleys basketball camp on Monday. Chad doesn't start class until the week after so we will continue to do the two days on and two days off until next week in which we will do me at Egleston with Piper Monday thru Friday and then Chad there with her on the weekends. Hopefully Piper will engraft quickly and will be moved to the Ronald McDonald houses own transplant apartment of which Linley will be allowed to join us and my little family will be together again...

...one sweet day, prayerfully not too far away.

Day +1

2011-12-29T23:09:00.004-05:00

Here we go, my friends. All that can be done has been done. I have typed up a post about Pipers transplant from yesterday but am having problems uploading pictures and really, you need pictures to see how awesomely amazing this was. Hopefully it will be up and running tomorrow.

Today marked day +1 and is the first day that the donors cells are wandering Pipers little body. Hopefully they will like what they see and willl chose to reside there forever. Time will tell. I can tell you though that Piper is doing wonderfully. The cultures came back from the fevers she has on Monday night as E.Coli...but the next days cultures didn't grow anything and they know the "umbrella" antibiotic they put her on as soon as she spiked is sensitive to E.Coli. They chalked it up to the ends of her line landing in her diaper which is disgusting but thankfully over. She has had no fevers since then. The drs decided to put her on another immunoglobulin which targets CMV because while her number haven't gone up, they also have not gone down. Hopefully this will help keep them steady until her body is strong enough to begin fighting it off again. Piper has thrown up once today with a lot of mucus so we think the mucositis ( mouth sores) are beginning. Everything we can see on her mouth and throat look fine but it begins way down in the GI tract where we cannot see. This is totally normal and is to be expected. Piper will have to get worse before she is able to become stronger...our prayer is that she engrafts quickly and those beautiful white blood cells can work their magic before any of the potential side effects worsen.

I was asked a few times today what engraftment meant. It means that her body is beginning to produce cells white blood cells again after being destroyed by the radiation and chemo. Once they see three days in a row of an ANC over 500 they consider her engrafted...this is good because it's the white cells that will help Piper to fight off infection and side effects that we know are coming. Engraftment can take place anytime from day 10 to day 40 although they feel like Piper falls into the sooner category because of her perfect 8/8 donor and the large quantity of marrow that was donated and used. I sure hope so. I have followed quite a few friends as they have maneuvered the transplant path and it is scary. I have glimpsed how bad this can get but I am hopeful that Piper will continue to amaze me and everyone around with her resiliency and ability to overcome odds.

-1

2011-12-27T23:39:00.002-05:00

Tomorrow is it. The big day. My sister said she was sure I was terrified but, honestly I am not. One thing that I have learned over and over the last few years is that the known is scary enough to not stress over the unknown. Of course I am not thrilled with what we will be putting Piper through but I am even less thrilled with the alternative of letting leukemia take over and win.

No one can tell me what time this big ordeal shall take place so I cannot tell you a time or anything to pray. I imagine it will be a little like a normal day of dirty diapers, eating tater tots and playing in the playroom when all of a sudden the nurse shall walk in with a little bag of marrow and the transplant will begin. I believe it can take about 3 or 4 hours and Piper will be closely monitored the whole time. She will also probably smell like either creamed corn or garlic due to the preservatives that are used. And it will definitely be anti climatic...but hopefully it will be the beginning of a life free from leukemia.

Please sweet Jesus.

At this moment I am cuddled up to Miss Linley after a busy day at the Ga Aquarium with Chad. We attempted to make it one last celebration prior to the rigors of healing with transplant and the very real possibility of side effects keeping us from Linley for this short season. And can I just tell you what a wonderful mother I have? She is the only other person who is able to handle the details of Piper in such a way that Chad and I are able to walk away for a day and not stress. Our small family relys on her immensely and she never fails us.

Piper herself is hanging in there. She ran fevers last night off and on so she was reaccesed about 1:00 am so they could draw cultures from her port....she was a trooper about being woken with a needle coming at her chest. The entire night was just rough as she had monitors going off all night and a loud nurse and lots of poop and the getting a blood transfusion somewhere around 3:00am. We added insult to injury when she had a NG tube placed when she woke up because her appetite is slowing down and they prefer her gut to be moving, even just a little. Piper will also begin TPN, which is total nutrients given through her CVL in addition to the nutrition given through her NG tube and into her little digestive tract. She is still snacking and drinking some but it won't be enough and will probably stop all together once mouth sores and the other side effects kick in.

Good times ahead of us, I tell you.

I finally made it to Target to purchase the adaptor for my cameras SD card and my ipad. This means that I will be adding pictures to my posts from here on out. I will also be catching up on a lot of old posts and pictures from the last few weeks. What I won't be doing is sleeping, seeing much of Linley or completing thoughts...but I will be moving Piper towards a Cure and that will help it all even out in the end. ,

" wherever you are"

2011-12-27T01:21:00.003-05:00

Another night of insomnia. If history is to repeat itself, I will struggle with sleep for a few weeks getting by on 4 or 5 hours at night until at some point I will pass out and sleep for 12 hours straight. I know many a doctor will warn me against this but if a wonky sleep schedule is what I get out of this messy season then so be it.

I've a lot on my mind tonight anyways.

I've had this quote in my head today..."wherever you are, be all there! Live to the hilt every situation you believe to be the will of God". (Jim Eliot) I love this quote though I will confess that it was the first line that initially was singing through my head this evening. I am often forced to jump back and forth between the rigors of caring for a child in the hospital and the rigors of a a child who is well and busy. I would go flat mad if I spent my time with Linley worrying about Piper and vica versa...I have to embrace whichever lifestyle I am in the midst of and be ready and willing to twist at a moments notice into the other situation and those demands and blessings. I credit being sane today with the fact that this is how I deal.

It wasn't until I was re reading a book written by Elisabeth Eliot, the faithful widow of Jim Eliot, that I remembered the rest of this line that I so clung to. "Live to the hilt every situation you believe to be the will of God". Without getting all reformed on you, I have to say that I very much find solace in the fact that this is my life in the will of God. I have often said that I do not believe he was caught unaware by the leukemia hiding within my Piper. God didn't cover his face in surprise when Chad and I found ourselves separated and fighting...and He sure wasn't rattled when Linley was conceived before I wore a ring on my finger. His will was just being acted out. And despite the painful steps I am often required to take in order to remain in His will, I can do so in peace.

I believe that Gods one big "will" is to have our hearts love him...
deeply and frantically and only.

So tomorrow when I awake after a fitful night with Piper and her random fevers, I will have to focus on her. And then tomorrow night when I am resting with Linley I will have to allow myself the luxury of bare feet and soft pillows. And in the few, small moments I have as I walk or drive between my two blessed responsibilities I have the knowledge that despite liking this or not I am in Gods perfect will.

Some may not find this a reassuring thought but I do. I really, really, really do.

Merry Christmas!

2011-12-26T03:28:00.002-05:00

Do you just love how faithful I have been with my promise to blog each and every day? Yep, I bet you do.

Pat of the reason I'm not so up to date on things is the fact that not much is going on. When I left on Saturday night to spend Christmas with
Linley, Piper was just roaming the halls and playing in the playroom and pooping slot. All normal two year old behavior...well, normal two year behavior when one has cancer and is in the process of ridding their little body of those pesky cells. Her appetite is slowing down and that is to be expected. Not that I blame her because the food at the hospital leaves much to be desired and she is not allowed to eat fresh fruits or veggies or anything brought from home or from a restaurant. So basically nothing good and really, what's the fun in eating if it's nasty? She will use an ng tube when she stops eating, whether because of lack of appetite or from mucositis and such. Not looking forward to that but desperately looking forward to completeing the process.

I have thourally enjoyed my time with Linley. She held me to the promise of sleeping under the Christmas tree on Christmas Eve, thankfully I was so exhausted I was not even phased and slept like a child. We were able to FaceTime with Daddy and Piper this morning while opening presents and that was just wonderful...the rest of the day consisted of church, then IHOP for lunch since we totally forgot about a Christmas meal in the hustle and bustle of juggling the girls, and the rest of the afternoon was filled with me doing little crafts and Linley playing with her toys. We managed to watch three different christmas shows and did a great amount of cuddling on the couch. It was very relaxing but we missed the craziness of two little voices and the chaos that a busy family creates. Not a perfect Christmas but a good one.

For some crazy reason I drand 2 coca-colas for lunch and am still awake at 3:43am. But I have rearranged my living room and parts of my bedroom, I have cleaned and cleaned and I have organized anything out of place that I can get my hands on. A million thanks to Catherine for helping me out and inspiring me...thanks friend.

Tomorrow after a list of errands and laundry we will go back to Atlanta and stay at the Ronald McDonald thoughout the week since Linley is out of school as is Chad. We will take turns being with each girl and hopefully once school is back in progress we won't all be so tired already and will be able and ready to take on transplant. I sound very certain of myself today but truly it is scary. I have a friend from the support group I am on for these amazing infant leukemia kiddos and her daughter is currently in the midst of transplant. She has completed all her treatment and is in the hospital playing the waiting game. The last few days have been very difficult and I have spend a lot of time praying for Paxten as well as her faithful mommy and daddy. Check out her caringbridge because she is an incredibly adorable little girl who deserves her own cure.

www.caringbridge.org/visit/paxtenpearson

And leave a note...we like reading notes, guys....its encouraging and just plain nice to know that not only are people watching our struggles but also wanting to support us. So show Paxten some support and a million thanks for rolling with us. Even when I have insomnia but an incrediblly clean apartment at 4:00 am. :)

-5

2011-12-23T21:48:00.003-05:00

Another day down. And yes I do have a literal calendar on the wall that I daily mark off...closer, closer and closer.

Piper completed her sixth radiation sessions yesterday at 6:30pm and none too soon. While we had no problems (thankfully) with the actual radiation it was difficult keeping her happy in this tiny room without snacking. Not impossible but difficult. Today when she woke up Piper was able to have a pancake which was only edible while dipping in syrup and some rice chex dipped in my chobani...I'm sensing a typical two year old trend of dipping and sharing food. I know at some point soon she will not be able to eat and will require an ng tube so at this moment I am contented to have her snack her way through the day. And through my plate.

All of Pipers bloodwork and cultures came back negative so she is no longer in isolation in her room. Of course, this being the transplant unit she is required to wear a mask outside of her room and she is not allowed out of the unit but still it's better to walk laps and play in the playroom than to drive mommy nuts. Major thanks to all the lovelies who have sent Piper little gifts...they are being hidden and are quick to come out when the moods gets grumpy. Huge, huge, huge help to me!

Today Piper began the chemotherapy portion of the work up regime for transplant. She is recently on hour 15 of a 24 hour transfusion of etopisode (vp-16). Tomorrow and Sunday she will have 2 hour infusions of cytoxan and the two days of rest before Transplant day. And she continues to feel well. Still playing and running around. No nausea or vomit. We stay up on her four times a day oral rising out and attempt daily bathing though that's a hot mess with 3 lines coming out of her chest that cannot get wet. Oh yes, her port was reaccesed with no problem and will be deaccessed when it is time to change the dressing on her CVL because the two have tegederm (tape) that is sealed together.

Like I mentioned earlier in this post, thanks for the gifts. Thanks to my parents, my sister, to the Halls and to Christy with Cancer Warriors for the visits...it means a lot to me. And to everyone who is keeping up with this crazy ride we are on, thanks as well. We're going to make it through this and you now have seats to watch the ride. I know it's going to be crazy but I also know we continue to thrash about still seated in Gods hands and will.

-7

2011-12-21T18:56:00.003-05:00

Four out of Six of the radiation treatments are done. Almost there. I am so happy to be working our way through those things. Not that they have been horrible but rather because she has two sessions each day, one at 7am and another at 3pm. She is unable to eat or drink anything prior which is no problem with the first session but is a doozy between sessions when she is tired and hungry. We are keeping her pretty busy but its only been since today that she is allowed to even leave the room although she cannot still go to the playroom because of her lingering cough. So we suit her up in a yellow gown and a blue mask and off she roams. Thankfully they have allowed us to bring the play kitchen from the playroom into her room and she has been miss busy making us coffee and cheese...the only things she offers so I may not have high hopes for her being my susie homemaker. oh well.

Other than that we continue to have problems getting blood return from her port. Not sure what the deal is but I wager that it was partially the fault of the lady who accessed her in surgery. She was ridiculously bad at it. Today when Piper was sedated for radiation they attempted to access her and were able to get some TPA (clot busting agent) into her port and will leave it there until tomorrow morning when she is sedated again to see if that helps it along. If they are still unable to get blood return then they plan to remove the port before tranplant and neutropenia. Remember that her CVL is a double lumen so she will still have multiple lines to do transfusions and antibiotics and chemotherapy.

She is sleeping really well at night and I am pulling the bed up to hers so that she can still reach out and touch me if she wakes up but so that I dont have to spend the next 4-6 weeks sleeping on my left side. I am grateful for that one. Pipers appetite is slowing down but she does not seem nauseaus. I told a friend today that I know things will get exposentially worse so I am thankful for each day that goes by so smoothly.

I am thinking alot of the verse in Matthew (6:34) that says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Its a good reminder to all of us when we get fearful of what is to come, both imagined and real. I also like to channel Scarlett O'Hara and say “Fiddle-dee-dee! I won’t worry about that today. I’ll worry about that tomorrow. After all, tomorrow is another day!” ...'course I leave out the fiddle-dee-dee most of the time unless one or both of my girls are having meltdowns in which case I belt that out and they stop what they are doing for a minute and look at me like I am nuts. Whatever slows a meltdown works for me.

One week from today and it will be Pipers re-birthday. A big day...one that cannot get here soon enough. And meanwhile we will continue to take each hour as it comes and attempt to not go mad in this tiny room with a silly little two year old.

Transplant -9

2011-12-19T22:12:00.003-05:00

Today we stand 9 days until Transplant so we call that day -9. Each day we get closer and count down until Transplant day, which is considered day 0 and subsequent days are +. As in day +1, day +2 and so forth. Hopefully Piper will be able to discharged around day+30 or so and will be able to return home at day +100 or so. And will be cancer free still at day +365 and heading down a path of health. All of that is a long ways away and I will go mad and have a panic attack if I spend too much time thinking about all that is ahead. Sort of how I have a panic attack in my brain each time I have to park at the parking garage here which goes down a ridiculous 4 levels underground.

Today was typical of any experience with two year old, medical stuff, oh and Piper. She has been fighting off a cold for a while now...lots of snotty noses, some coughing and congestion. No fevers and each doctor who has seen Piper in the past few visits has agreed that it will pass. Of course, this morning after dropping Linley off with my mom and dad and unloading Piper and her paraphernalia we made it upstairs to surgery only to be told she had a fever. This began 2 hours of her being poked, prodded and checked out...only to finally watch the fever go away on its own. I know everyone was holding their breathe...the amount of work, coordination and detail that goes into preparing this transplant is amazing. One little kink, like an infection, can throw everything for a major loop. Praise God the surgery was a success and Piper joined us in the transplant unit a little before noon. She was pretty hungry and sleepy so after a lunch of tater tots, pedicure and pizza she took a 3 hour nap. Unfortunately because of not being able to eat this morning her zofran was missed and she threw up when she woke from her long nap. That was the turning point of the day because from that time on she was moving around the room, coloring and playing...mostly happily. Piper is especially enjoying using her double lumen lines as drum sticks on whichever solid surface is closest...silly girl. She will be in isolation in her room until the cultures taken from today clear her from the flu or other respiratory funks. Once those clears she will be allowed to roam the halls providing she wears her mask obediently. She will not leave this unit except for tests and radiation until she is discharged. Chad and I are able to come and go and guests who are healthy are free to visit but she will be slowly feeling worse and worse over the course of the next few days so that's not really appealing to most.

Pipers room is small but comfortable. There is a playroom across the hall once she is cleared to leave the room. The family lounge has an oven as well as the fridge and microwave. And the laundry room is around the corner. I think we will find ourselves adjusted just fine here. And thanks to the amazing generosity to many wonderful friends we have the iPads and FaceTime with which we were able to see sweet Linleys face this evening. I cannot tell you how incredibly great it was for all four members of this family to smile at each other...and make faces too of course. We are wild and crazy like that.

I've been asked a few times for the address here and Pipers room number. We love to hear from y'all so please feel free to send Piper cards and treats...she cannot have stuffed animals or fresh flowers or fresh fruit though so please keep that in mind for her safety.

Tranquilizers for mommy and beer for daddy would not be returned...just saying.

Piper Needham
Childrens Healthcare of Atlanta at Egleston
1405 Clifton Rd. NE Atlanta GA 30322
Room 3205 Aflac Transplant Unit.

Thanks for following us on this messy, tiring, grace filled journey.

Here we go...

2011-12-18T23:46:00.003-05:00

The last 3 days have been so incredibly fast. Linley is done with school for Christmas, Chad completed his finals and the whole house let it a huge sigh of relief. We deliberately chose to not make plans but to hunker down at home...playing outside, watching movies and eating ridiculous amounts of ice cream. This is how the Needham crew attempts to freeze time. How we step back and remind ourselves that life is about to get oh so very hard again and wouldn't it just be nice to cuddle? ' Cause it is.

Finally tonight we ordered pizza and watched Toy Story. The girls had a bath complete with splashing and wildness.
Laundry was folded, dishes were washed, the fridge was emptied and the trash was walked to the dumpster. We were packing up and planning to move on out...not happily. Resignedly. We will do what we have to to chase Pipers cure. We have to, there is no other option but it aches my soul knowing what I am about to put Piper through. And Linley as well in a less physical but equally emotional way.

So here we go. The next step closer to a cure for Piper. Of course, sadly, each step closer to her cure is a st farther away from our comfort zone. A new hospital, new faces, new procedures and lots of new worries and fears and unknowns.

Tomorrow morning at 7:45am, Piper will have a CVL placed in her chest. She already has a port but they prefer to use a CVL and this new one will be a "double lumen" meaning it will have two lines to be used at any given time. After surgery we will be admitted and will be there at Egleston in relative isolation for anywhere from 4-6 weeks depending on how Piper does. Beginning on Tuesday (through Thursday)she will have twice daily total body radiation and beginning on Thursday (through Sunday)she will have high doses of chemotherapy intended to prepare her little body to receive the life saving cells of some amazing Eurpean woman. She will have two days off to rest before transplant day.. Pipers actual transplant will take place on the 28th. And that's when we begin to wait...wait for her body to receive the cells and pray for them to take over any cells she had left...hoping this leaves her free to begin her life cancer free. She deserves it...

This transplant come with so many risks. Both short term and long term. I have neither the time nor the desire to think about what could be on down the road. I just want the option to walk roads with Piper someday. Short term, there are many risks...things I don't want to dwell on but that I heard loud and clear when I signed the paperwork allowing them to attempt to cure my daughter. It is frightening.

Beginning tomorrow I will blog every day. Or I will really, really, really try. I cannot guarantee that it will be an easy read but Im sure it's not going to be easy to live out either. So of you are squeamish, pass on reading for a few months. And I will most definitely be saying shit more often...both literally and in the figurative " my life is really not rolling the way I had planned" sort of way. Can you deal?

Now that I have explained things and shown off that I know how to use curse words I will ask for some prayers.

1. Minimal side effects with maximum results.

2. That Pipers cmv levels do not cause more trouble.

3. That Piper fully engrafts...begins making her donors cells.

4. That Linley works through all of this...she has had some candid cries lately and I know she is hurting.

5. A lifelong cure for Piper.

And no matter what, I know that I know that I know my God is able to do big things....I hope that He does them in my Piper.

Details

2011-12-09T22:54:00.005-05:00

In an effort to not become totally and frighteningly overwhelmed with what we have planned in the next two weeks I chose to ignore a lot f the details that I was forced to hear about earlier this week.

So far so good.

Unfortunately what I hide away always come back out and makes itself known.

I found this out today when I was laying down with Piper for her afternoon nap. She is doing fine, happy even...still, she has the cancer look. The tired and red eyes. The pale tone. The skinniness despite eating well and pooping normally. I make myself not focus on these details by covering her head with a pretty hat or throwing food at her all day but still the facts remain that within this beautiful child that I love so passionately is leukemia. It is hiding. It is going to be fought against with a vengeance but still it lurks and affects so much.

And when I laid next to her in her bed and she smiled at me and clasped her hands under her chin, as I do when I sleep, she broke my heart. I tried to keep the tears at bay because it's not the best thing for confidence boosting if mommy is lying prostrate on the floor sobbing like someone spilled my Cheerios. But still they leaked out. And continued to despite my best efforts of smiling and kissing. And she smiled and kissed me back but her forehead was furrowed and she was using her little fingers to trace the tears down my cheek. And my heart would not stop breaking.

So that was the cautious beginning of a breakdown that I surely deserve but have no time for. The appointments on Tuesday were just labs and meeting with Dr. Haight who will be one of the transplant doctors managing Pipers care. We also met with social work and a psychologist who was impressed with my families support system...which really is amazing. On Wednesday I begged my mom to come with us as we had appointments beginning at 7:30am and finishing at 3pm...everything from testing her liver, to meeting with child-life specialist, to chatting with the financial advisor, to an echocardiogram and completing this day with the frightening meeting with the radiologist. So much information and so much fear ...they are calling Piper a complicated case because she has had active CMV and because she is still not entirely disease free. Her lab work showed a slight elevation in her liver numbers so they have chosen to not give any more methotrexate or vincristine until she admits in an effort to have then heal before ravaging them. They are pleased that she is walking much more and that she is just so blasted good. And happy. And totally oblivious to all that is heading her way.

One thing that I found interesting from my meeting on Tuesday was that Piper, though she looks genetically common, actually was not an easy child to match for this transplant. I believe she had multiple options but for some reason or another they ended up with a match in Europe. Yep, Europe. The whole process is very, very, very private but we do know she is a 32 year old female. Hopefully this transplant will go as smoothly as possible and someday we will be able to get in contact with her and thank her for this amazing gift she is giving. Until then we just pray she continues to clear all the genetic and infectious disease testing. See, details that suck a person dry.

So now we continue to make big memories and take so many pictures. Irregardless of how successful this transplant is we will not have happy and healthy Piper back for a while. And Linley will not be able to love on, sleep with or boss Piper around like she should be able to...all in due time we pray. And we really, really, really pray for this to be only a dry, painful season that is followed by rejoicing and testimony.

Here we go.

2011-12-05T23:44:00.007-05:00

My Facebook status this morning kindly requested that Monday not kick my butt. It didn't but it tried to wear me out, run me ragged and mentally suck me dry. Nothing catastrophic just the general busyness of running a home, raising children and oh yeah, curing cancer.

Well, I'm not. (curing cancer, that is)

I never finished college though I probably could cure cancer if I had a full night of sleep or two.

Part of the busyness of today revolved around the fact that tomorrow begins Pipers bone marrow work up...the few weeks pre transplant where they check out her little self and let us know she is strong and healthy and ready to proceed. Her first appointment is at 11:00am and it is just the same general labwork and physician consult...albeit with the team at Egleston whom I hope and pray are a fraction of as kind, helpful and hopeful as our team at Scottish Rite. After that appointment we will have a psych appointment at the same location. That one should be interesting since I'm not even able to get Piper to clearly express what she wants to eat for lunch much less how she is feeling.

Emotions, Smotions.

Nobody is getting any big feelings around here until all this is said and done and all those who desire hair are given beautiful heads of it.

Wednesday will be another day at Egleston, only it will begin at 7:45am and will be filled with multiple appointments all over their campus and in areas with names like Nuclear Radiology which just typing out makes me want a tranquilizer or alcohol. Or both. Also appointments checking out her kidney and liver and heart function. Tomorrow is also the day they plan to give me the consent form to allow them to pump horrible chemicals into my second born and then to totally wipe out her immune system and then, hopefully, to revive it being leukemia free. I cannot imagine signing this paper but I will because leukemia waits for no one. Thursday is yet again another trip to Atlanta but because we are wild and crazy people we will go to Scottish Rite instead of Egleston and see those doctors there for Pipers regular chemotherapy. I say "we" but mean "Chad" because I am taking the morning off before I begin to speak chemo-ease and not my typical run on English. And Chad has finals this week and next which really, just makes sense for how we tend to roll around here.

There you have it.

We are busy little people. I am attempting to keep my head on straight and am both ready for this whole process to be over with and still hesitant to even begin for hopes of a better, more optimistic option to open up for Piper. I am tired of making big decisions and knowing that none of this was ever on my radar a far as things I wanted when I was a grown up. I know that this is just further proof as to my huge, huge ,huge need to lean on God and his sovereignty and goodness regarding to my plans and hopes and dreams.

Really? Again?

2011-12-03T22:37:00.003-05:00

Piper is a pooper.

Oh she's a sweet and cute pooper but she's a pooper.

She has had loose stools for weeks now but not like this. Ever since Mondays chemo she has been steadily getting worse. And worse and worse. Today alone I figured I have changed a minimum of 25 dirty diapers. And yes, her little bum looks red and angry but thankfully we have the most amazing stuff for that that we slather on every 30 minutes or every diaper change...whichever comes first.

Good times.

After changing 4 in an hour I called the on-call doctor to vent, er...get some advice. Because Pipers CMV levels are very low and she is still wanting to eat and play we are assuming it to be the results of Monday's chemotherapy. So now we have given Piper the first of a few doses of Imodium in an attempt to dry things up a bit. She has already lost about 2 lbs in the last month or so and we really need to have her as healthy and strong as possible before tranplant not withering away as she is at the moment. And she is supposed to have more chemo next week, poor girl.

Have I memtioned how much leukemia stinks lately? It truly does. I've yet to find the silver lining in this gray cloud and I am worn out just from the effort it takes to keep myself upright some days. Less poop would help me out a bit though if requests are being taken.

Thanksgiving 2011

2011-11-30T23:02:00.007-05:00

Simply being home and together was enough of a reason to give thanks this year.

Last year we celebrated Piper being cancer free but she was beginning to suffer from that blasted diarrhea/vomit fest. The year before that we were still reeling from the fact that our infant even had cancer and we spent the holiday receiving chemo inpatient. And the year before that we had just found out that we were adding another fancy face to this Needham crew. Ups and Downs seem to be our trademark, I believe.

This year we spent it with Chads side of the family and feasted on amazing food and were able to watch the girls run my in laws busy as they like to do. Linley loves the attention and is confident enough to roll with new surroundings but Piper likes a chance to warm up...kind of like her mother. And Chad did not get a "turkey coma" as he likes because I had a glass of wine and that had me dozing on the couch while the girls went for a walk with all those adults who love them so. Don't judge me, please.

After eating more than we ever should have we headed downtown for our annual trek to see the Macy's Christmas tree lighting. Usually we ride Marta and stand at the back and enjoy it that way. This year we were given VIP seating because Scotty McCreery was the featured performer and my six year old has loved him since the first time she saw him on American Idol. She loved seeing him sing so up close and even Piper was a trooper through the whole show and the lighting and all. We weren't able to shake his hand as she so wanted but the whole experience was pretty exciting for her. Major thanks to the every amazing Karen at the clinic for making this possible.

Its sort of a "photo dump" sort of night.

2011-11-30T22:29:00.010-05:00

Here's the post where I catch up on the last month of our lives.

We were blessed to celebrate Thanksgiving at home, a fact that was huge to us since we know that Christmas will be in the midst of radiation and chemo and prior to a transplant. I am deliberately not planning many thing and am choosing to stay close to home. Its a good season for us four...the girls are an absolute joy to be around and with each other and that warms me in a way that nothing else ever can. That being said, we still stay busy painting pumpkins, figuring out our new Ipads, enjoying bonfires, learning the joys of the potty, getting awards for soccer and singing in chapel. I am Susanna, after all..cant sit too still.

Sadly, I am not superwoman and I find that in order to actually participate and enjoy a lot of the moments our family has I have to put the camera down and not worry about it. I'm going to assume that its the ages of my girls since I know many a mother who is somehow able to detail each significant situation and still actually be in the mix of it all.

I want to be like those ladies someday but today, I give you a few new posts about those two sweet girls that I adore and their often silly, sometimes grumpy, frequently crooked, usually smiling blue eyed wonder filled faces. You can adore them too...try not to.

I'm back.

2011-11-21T22:28:00.004-05:00

Last Monday morning we got the call that the preliminary results showed Piper was in remission. For some reason, while I was thrilled, I found myself keeping it in. Numerous people called or texted or emailed and wanted to know the results but still I couldn't quite get myself to talk about it until we got the final report. When I still had not received a call contradicting the preliminary results from Dr. B the next day I was ready to believe it and begin spreading the news. So I did...I told the ladies in my Bible Study and my family. I even found myself telling the cashier at Publix, who was quite happy for me and my little bald blue eyed daughter. Maybe we finally had this beast under control?

It wasn't until Tuesday night that Dr. B called me and told me that Piper still has .16% MRD. (MRD stands for minimal residual disease and it represents the amount of leukemia found within her marrow). At relapse she had 67%, after the first round she had 2% and now she has .16%...not enough to declare her in remission although it is incredibly minuscule. Somehow I found myself again in a slump. I chose to not talk, explain and/or mull on the fact that the beast was still within her sweet little body. There were many tears and fears and they were very, very, very oppressive thoughts until we went to the clinic and finally sat down with Dr. B.

Basically, Dr. B is not overly concerned about the small amount found in her marrow. Piper. At this point they feel if they were to give Piper even more high dose chemo, instead of it conquering more leukemia it would actually cause her cancer to become resistant. This would be the worst thing possible.

And so the plan continues to be a transplant here in Atlanta at Egleston. Pipers treatment will consist of Total Body Radiation, higher doses of chemotherapy than she has ever had before and then finally when her body is as empty of her own cells as possible, the "perfect match" transplant (December 28). Between now and the transplant admission date (December 19) Piper will received lower doses of chemo every 10 days beginning last week. So far, apart from nausea, loss of appetite and some diarrhea, she is faring well.

Did I just write that? Is it warped that all the above still means "well"?

We will be home here in Athens for the next 4 weeks. Every ten days will be chemo in the clinic. And the transplant workup will begin on December 6th and 7th while they examine and test her little body to ensure it is strong enough to proceed. At this time we have no immediate concerns but the amount of chemotherapy she has already received is enormous and has the potential to damage so much.

I so do not care.

I will worry about that one another day.

Its just so nice being home with both girls and that husband of mine.

Now I am glad that I have filled you in on all the ugly but hopeful plans and I can start filling you in on the two year old I have who is beginning to walk alone and the six year old who is beginning to come up with some of the most (flashy, quirky) interesting outfits that are always worth a picture or two.

no news.

2011-11-13T23:05:00.003-05:00

I have no news. We have had a blessedly busy weekend and my mind has not often wandered over to the "results of my daughters bone marrow aspirate and potentially the rest of her sweet little life" side of things.

Thank God for that.

I am only posting because I am at a loss. I have spent a large chunk of the past 2 months scouring the Internet for cures, treatment options and a dash of hope for Piper. There is a frightening little amount of information out there. I cannot tell you how terrifying this is. We are continuing to make steps towards the bone marrow transplant here in Atlanta but I cannot help but feel like we are missing something.

I had so hoped it were St. Jude.

It was the best option...I cannot believe that Piper will probably miss out on this only because there is not enough room. Room, beds, space...who would have thought such simple things would be the deciding factors in how and when to cure my child.

And how am I still breathing, laughing, moving about when the very fact is that medical options for Piper are limited. That despite 2 years of the worst ugly you can ever imagine we are still facing such potentially such an even uglier few months. That irregardless of the primitive and fierce love and protection I have given Piper it may not be enough to push me through this season. I am weary. So weary.

Within this evening alone I have sent out 9 emails to specialist and physicians all over the States and Canada, all the while praying for an answer. I don't even know what to expect at this point and am constantly bouncing from the highest of highs to the lowest of lows ever imagined. This easy going mother has begun to morph into a frantic and aggressive mom at times when the sheer lack of options begins to prove itself.

You cannot do this Susanna, you are going to have to trust Gods sovereignty.

Yet again.

Remind me of that please sweet friends. And pray.

this post sounds a lot more calm than I feel.

2011-11-09T23:44:00.004-05:00

Tomorrow morning, much too early than we prefer to be up, Chad will be taking Piper into Atlanta for her lumbar aspirate. This is the procedure in which she will be sedated and marrow will be removed from her lumbar in order for it to be checked to see if she is in remission yet.

When Piper first was diagnosed I remember feeling very much like "of course she will be in remission". When Piper relapsed I remember feeling again like "of course she will be in remission"...at this point I sincerely have no clue. No inkling or idea.

Each visit to the clinic Piper has a CBC done and we pray her counts continue to show no leukemia in her blood work, though we still know it is hiding somewhere. If she is low on platelets or hemoglobin she will have that transfusion. During the sedation they will also check her central nervous system since there has been cells there in the past. She will not be receiving any chemo in order for them to get as clear of results as possible. Piper's CMV levels are also monitored because with no immune system she is at a high risk of a recurrence and well, that was a ridiculous thing for her to fight off the first time much less attempting to go into a transplant.

We usually get results in 2 or three days so we could have results Friday afternoon but I don't expect them until early next week. And as usual, we don't know specific plans for the near future until we know what her body is doing. And yes, this is slightly nerve racking. Slightly.

What we do know:

1) chemotherapy is no longer the cure for Piper. Her leukemia has outsmarted it.

2) St Jude is still filled to capacity. They cannot guarantee us space within 2 months.

3) Irregardless of tomorrows results, we need to get the girl to a transplant. Soon.

4) She has a "perfect match" who is ready to donate at any time.

5) This match means treatment will be done here in Atlanta.

Short answer...yes, I am very nervous. The treatment at St. Jude is better, more effective. It is definitely our first choice despite how crazy it would make our lives for a few months. A traditional transplant at Egleston was our back up plan. We are still hoping and praying for a room to open up but the fact is that Piper needs to have a transplant soon...if we were to wait two months they are certain that she will only have more leukemia at transplant rather than less making the chance of success limited.

While I was complaining about this to a group of friends the other day I was reminded that whatever happens is actually Gods first plan. It is what He wants to happen, irregardless of what I want or what we feel is the best move. So with that in mind we are just praying now for clear direction. Whatever the best option is we want to know for sure and not be left making decisions too big for us to handle.

As for now we are enjoying the time at home. I love the simplicity of preparing Linleys lunch the night before, of making chili with Piper during the day and playing outside with the girls after school. Just going to the grocery store and not stocking up on ready made meals and purchasing food to make a homemade dinner is a great feeling. Not surprisingly, cleaning the bathroom is not nearly as fullfilling which explains the fact that I just dont plan to clean it. Im feeling lazy like that.

The death of sweet Tyler last week was a huge wake up as to what we are fighting against. It has frightened me and worried me and caused me much stress...that being said, I am attempting to remember that this is not in my hands (or fears) at all and that the results of the next few months are not up to me.

Piper is in Gods hands as are myself, Chad and Linley.

This is a very good place to be.

Fun Friday

2011-11-03T22:01:00.005-04:00

One thing I have loved about this new school that Linley is at is the fact that they work very hard. Academically this school keeps Linley on her toes (as well as Chad and I). But instead of it being all work, work, learn, learn they make a point to play hard also. Each month they celebrate their good work with a field trip, different each time but still something special and out of the box and exciting.

I love this.

And I especially enjoyed having the time with Linley and meeting her friends.

So many funny little kiddos.

My sweet Linley had a great time spending the day experiencing much fall fun.

She slid:

She jumped:

She snacked:

She rode:

She dug:

She zipped:

She swung:

She buried:

Have I ever mentioned just how much I love this girl?

death

2011-11-02T22:17:00.003-04:00

Sometimes death feels like an eternity away. So often we chose to not mentally go there for fear or for lack of understanding...often for me I don't go there because I know too well that it may very well come looking for my family all too soon.

In the last week I have lost two people. Two guys who were special to me for different ways and yet both of whom will stand for something so very good in my memory.

Last Thursday afternoon, my Uncle Dean passed away during an afternoon nap. Uncle Dean loved the Lord more than the wife, children, grandchildren and friends he left behind and that seems to be the saving grace for their loss. He called me "no-shoes-anna" when I was a little girl because my feet were to tiny for shoes. He was my fathers best man in my parents wedding. It was he and his wife who gave me my own best friend and maid of honor for my own wedding years later and I am forever indebted to him for that.

He was the epitome of a faithful man of God.

His family will continue to mirror Uncle Deans faithfulness, I am certain.

Today at 4:33pm a fellow infant leukemia fighter passed away. Tyler Burdick and his mom and family were so very strong, so very optimistic and so very selfless throughout the course of their 2+ years of fighting this terror. I was lucky to "meet" Stephanie on the online infant leukemia support group and we shared similar stories and experiences...she was always the first to encourage another and the last to complain.

She was the epitome of a strong cancer mother.

This loss will not change that about her, I am certain.

These two deaths have hit me hard. The fact that I, despite my faith, find myself questioning God and his goodness is merely the ripple effect of pain and loss. I cannot imagine losing my father as he is the man I most look up to and I cannot imagine losing my daughters whom I carried and bore and hold. But someday my children and my father will pass on. I cannot control this, as Pipers illness has taught me, and if the tears that hurt me today are any indication then I will not handle this as well as I haughtily thought back in the days when death was far away and life seemed so simple.

I have been listening to this song on repeat all week. Its so good.

And despite my sadness it is true.

Day 25 of 28

2011-10-31T16:34:00.003-04:00

Only three more days until this round of chemo is completed. Once Wednesday passes and Pipers counts begin to improve, we will be hitting the ground running.out.of.here.

I found out today that St. Jude is pretty packed. There is the hope to be in there the end of November but this is only further proof that we really have no idea what the next step will be. We know what we want to happen...but no movement yet. I have no idea what plan B is. Please pray for the doors to be opened and that Piper will find her place in their studies

Piper is doing well. She continues to have fevers at night but all of her cultures are still clear and good. She has a rash that moves about her body, sometimes coming and sometimes going...its so very odd. Hopefully it is only the sorafenib but it will probably be biopsied when her counts recover to rule out something bacterial if it is still present. No mouth sores or diaper rashes apparent, thankfully.

She still has an ANC of less than 10 but she had some pretty achy legs this morning and they are thinking it could be her counts coming back up. When that happens its not uncommon for kids joints to ache and be sore. Lortab this morning got her back in shape and running the halls. Still nibbling a bit but no real appetite to speak of.

Piper has officially lost her hair. Within the week that she had the last of her hair shaved off, we are beginning to see a little bit of regrowth. Its so soft and downy. I remember well how victorious I felt when Piper had her head of blond hair and no leukemia showing in her blood work. I ache to see her the way she was before she relapsed. While I know well that this is only hair, in our situation it is a big milestone and one that I pray we can quickly achieve again and permanently.

We are all growing tired of fighting this, of being apart from each other, from planning for days not weeks, of pull out couches and cafeteria food, of wondering what will happen to this family that we have worked so very hard to put together.

Its not uncommon in this lifestyle to be told "God wont give you more than you can handle"...I think this is ridiculous. Of course He will. And has. Otherwise I would not need Him and these days I need Him more than I ever have, although I cannot help but wish I were able to softly lean on Him not find myself clutching at Him and sobbing.

Day 22

2011-10-26T23:27:00.002-04:00

Monday evening Piper began to run a fever. This is not uncommon when she is neutropenic and is actually the reason she is kept in the hospital until count recovery. Literally in the course of an hour she went from normal to 39.4 (103 degrees) and shaking and chills.

The problem is that Monday was the day Pipers port was supposed to be reaccessed, they do this weekly to keep infection at bay. So the nurse had agreed to deaccess Piper that morning so she could have the day free and hopefully get a bath before re accessing her later that night for fluids. Unfortunately we didn't know that Pipers platelet count was lower than they normally transfuse at and the last time Piper was reaccessed with low platelets she bled out for over 3 hours while they rushed platelets. It was horrifically scary.

The bigger problem was that with a fever she can easily become septic with no counts to fight off infections or viruses. And they cannot give Tylenol or antibiotics to combat a fever until after they have a true blood culture to run. And they cannot receive blood without re accessing her port which would almost definitely bleed out.

Oh, and there were no platelets available in the state of Georgia for her A- type.

And they had no idea when platelets would be available.

I tried not to freak out.

(not very well, but I get points for trying)

And then just as (favorite) Nurse Jaime began to clean Piper up to be accessed to get cultures, (favorite) Nurse Alyssa popped her head in the door and said some had just been flown in from Charlotte NC.

Just for Piper.

So she was accessed...she bled a bit...they rushed the platelets...and all was well.

(And mommy kicked herself for not keeping small bottles of wine in the room)

Since then her cultures came back for, wait for it, "gram positive cocci in chains". Yep, that's what they told me. Apparently that probably means something in the strep or staph family which sounds scary but her cultures from the very next day were already clear so whatever is causing the fever is at least responding to the antibiotics.

Piper is still having fevers but she bounces back quickly after given Tylenol and she is nearly her normal busy, bossy, sweet self. She will continue to be on the IV antibiotics for about a week which is no biggie since we are snuggled in nice and cozy at the hospital anyways.

Well, Chad is at least. I'm barefoot on the couch at home with Linley.

I'm pretty sure he's cozy though since he loves the ugly socks they pass out there.

Odd man.

So keep praying that she is able to continue to fight this off, that nothing else rears its ugly head, that her counts recover quickly, and Oh yeah, that she beats Leukemia.

For the second time.

Jeez, she is such a complicated little sweetie and I don't mind a bit.

Normal/Not so Normal

2011-10-24T00:06:00.002-04:00

I am thinking I may have a case of self induced "bipolaritis".

Is that even possible?

Because it sure feels like it sometimes.

Take yesterday, I was hanging with Linley at her soccer game drinking my warm chai on a chilly morning and I was treating her and her friend to pedicures afterwards before dropping Linley off at my sisters house to bake cupcakes.

I showered and wore make up. I threw clothes in the washing machine. I drove my car. I had conversations about the weather and Halloween plans. I kissed on my nephew.

Totally normal day.

And then there was today. Today was me with Piper and the endless laps around the Aflac Unit while attempting to chug my coca-cola and fend off her requests for Big Bird and allowing her to paste stickers on the doors so she wouldnt ask to eat.

I showered at lunchtime and totally forgot makeup. I pinned Piper into her stroller to walk to the laundry room. I followed her and her walker around and around. I had conversations about blood transfusions and fainting spells. I kissed half my family goodbye.

Not so normal day.

Not a bad day but I really am craving the ability to take off my shoes, grab a bowl of ice cream and catch up on what that crazy man and his 4 wives are doing on TLC.

What I am really craving is the life that I used to think would be so boring. Little did I know that all the last 2 years have done is make me ache for the simplicity of soccer games and dinner dishes. Of bare feet and laundry running. Of to-do lists and diy projects. Of both daughters cuddled together, playing together, living together.

I chose to enjoy the moments for what they are when I am here with Piper but I also fight against allowing myself to become angry at having so much snatched away from us.

I think that this "bipolaritis" may go nicely with my insomnia in an apparent attempt to make this mommy a hot mess.

Not going to happen, yall.

Normal or not so normal...we're doing it.

A plan is a hatchin'.

2011-10-18T22:27:00.004-04:00

Not my plan of course. Somehow MY plan got derailed about the time I became a grownup and realized my parents were (surprise! surprise!) smart and telling me the truth when they said being a grown up was some hard work. My plan involved holding hands with my love while watching many little blond children run the backyard. It involved days filled with playing, baking, gardening, rearranging and teaching...not cancer and the steamroll of a path that it has made through such a simple plan.

Nope, my plan is on hold as I am learning ever more that holding onto the Big Guy is infinitely more important than I had ever thought possible. Not that I don't continue to have plans...somehow though it seems like someone else is making those plans for me an awful lot. And not that I have as many options anymore and not that I have the capability to make choices clearly very often these days.

(that goes for everything. Should I have more children? Should I shower? Should I argue with Linley about math facts? Should I eat pizza or subs for dinner? Should I buy a big thing of laundry soap or a small one? Should I shave Pipers head? Should I do this, that or the other thing?)

Should I move with Piper to Memphis, Tn to be treated at St. Jude?

What?

Yes, that's the plan that we are a hatchin'.

There are doctors at St. Jude who have more options for Piper than the few we have been offered here. Here we are told that unless Piper can get to remission using the traditional chemo they are able to offer she will not be eligible for transplant. And even if there is a transplant that takes place there is little chance that the leukemia will not rear its ugly head and cause Piper to relapse yet again. St. Jude has experimental but positive evidence that there is an other option for children with high risk leukemia like my Piper. There is an article about it here

So the plan is that Piper and I will be going to St. Jude for a consult once her counts begin to recover from this round. When will that be? Who knows...hopefully within the month. And the rest of the plan is entirely contingent on what we are told during our consult and what Pipers leukemia is doing. I am certain that if Piper is taken on as a patient we will be there in Memphis for a few months as she goes through all the treatments prior to the transplant as well as the recovery from the transplant.

Chad will not be able to go. Linley will not be able to go. I am going to learn a whole different mode of mothering through technology at best. This is crushing me...I cannot tell you how much. We have chosen not to even tell Linley of this option until we know for sure what we will be doing and in which way this will effect her, as I am certain it shall throw her for a loop. Heck, I'm trying to not worry about not being with my sweet Linley for multiple months until I know for certain that this has to be the plan.

So there you have it. A plan. Its tentative at best but its got potential.

Potential is good. Leukemia is horrid. And this mommy is heavy hearted at the moment.

day 11 of 28

2011-10-16T17:27:00.003-04:00

Here we are. Back at Scottish Rite.

On Friday, Piper had a 8am sedation for chemo targeting her central nervous system. This went well and we planned to be admitted but there were no beds in Aflac so we were able to leave and go grab lunch before settling into room 187 for the rest of this 28 day round.

Piper has some rash on her body as a result of her Sorafenib (oral chemo) but because it is not causing her any pain or itching they are just watching her. She has this chemo twice a day at 8am and 7pm and the only complication she has had is the fact that she cannot eat or drink for 2 hours before and an hour after...ugh. There is a new chemo that Piper is receiving this round called Clafarabine. It is supposed to be pretty brutal stuff so they have timed her to have it in the morning from 10am-noon when there are doctors galore roaming about. So far, two doses in, she is handling it well. She gets a two hour break then she begins a two hour chemo called Cytarabine. The rest of the day she is able to hang out, stuck to the iv pole and her fluids, but still free to move and walk and charm everyone.

Today marks day 11 of twenty eight days. The above schedule is for days 10-15 and after that she will be only receiving her oral chemo twice daily for days 12-28. The plan is that she will be here until her counts recover...hopefully and prayerfully it will not be the same 6 week stay but it all depends on Pipers marrow and how well it bounces back.

We have a new option lately regarding Piper and what will be next for her treatment plan. I am tentatively optimistic and would appreciate prayer that the right choices are made for us. It will require more but has the potential to be more successful.

Things are blessedly slow around here but I am certain that many things will pop up. Prayers are appreciated, as are the notes, gift cards, meals and childcare that everyone is blessing us with. Please don't stop...its what keeps us rolling on.

James 5: 14-16

2011-10-13T01:00:00.002-04:00

"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective."

(James 5: 14-16)

Tonight the pastors and elders of our church came over. Piper was anointed with oil and then the group of men laid hands on her little self and prayed.

Big prayers for miracles.

Big prayers for our marriage and family.

Big prayers for peace and faithfulness.

It was such an immeasurable blessing to us.

Chad and I are still not accustomed to the overflow of love that this church has bestowed upon us. Not in any way to pat them on the back but rather to thank the throes of men and women who see loving as a reality and not just a sermon.

Within this group of eight men standing in my living room, two of them are childhood cancer survivors and one of them is currently walking through his sons lymphoma diagnosis. The men that have been through this, get it. The rest of them are still faithfully bringing our family's name to their mouths each day in hopes that a cure will happen.

I don't know how prayer works. I do know that God is not a genie and that He will not necessarily cure my Piper if I only believe it enough. But He is capable and He will cure my Piper if that is His plan...my only job is to trust that the amount of love that He has for her vastly outweighs my own. Gods goodness is not reliant on how much I like or trust His plan.

And I do trust that because when life becomes so very hard and its uncontrollable and uncomfortable and unexplainable what else do I have? If I loose the trust in God that I have then I am left with no fathomable hope, but still all the uncontrollable,uncomfortable and the unexplainable that so can rattle someone.

No thanks. I cling to hope. And I thank God for good men who step up and put to action what is preached on Sunday morning...it soothed our souls tonight.

Linley the Soccer Star

2011-10-10T23:13:00.003-04:00

My Linley tends to be the watcher in a group. When she was young, our favorite thing to do was to go people watching at the mall or park. She would have a little snack and be perfectly content to see faces and hear voices. She would watch with those big blue eyes that she still gets comments on and people would notice her and watch her back. When she was able to talk she would recall details of things that I never would have noticed and she would ask questions of things I would rack my brain to remember.

(Those sweet and pensive moments have not gone entirely away, thankfully.)

That girl, shes a watcher.

And recently shes becoming a mover as well.

Not unlike her mother, she is short. Also not unlike her mother, she is feisty. Totally unlike her mother though, she is showing skills in soccer. And somewhere along the way shes picking up a big dose of confidence and is doing an amazing job at keeping up with the game. Each Saturday she joins her team and follows directions well enough to keep winning...Three games in a row!

Now not only do we know that Linley is a watcher, shes also a mover and a shaker.

A very talented, confident and fiesty mover and shaker.

Lord love that sweet Linley Coe.

When something works out for once

2011-10-05T20:51:00.003-04:00

Remember that time that I felt ridiculously downtrodden and wanted something, anything really, to work out for us? And I am easily impressed so this could be as simple as free parking at the hospital or as fabulous as a call saying "whoops our mistake, there was no leukemia in your daughter. Don't call us, we will call you".

That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.

Rabbit trails? I know. Read on and see how something worked out for us, for once.

It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.

The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.

Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.

Praise God.

Its not.

We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.

(Because its Tuesday and that's the scheduled day to sob regardless of location)

Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.

I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.

I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.

This really works out for me.

tomorrow (again)

2011-10-03T22:20:00.004-04:00

Apparently I am running out of witty...most of my recent post titles are annoying even to me. Big halfhearted promises to improve on that after, say, leukemia is cured and I am working again will all of my own brain cells plus a good nights sleep.

Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this point...as far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.

Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.

Um, Id like to be free if anyone is wondering.

On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.

Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.

I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.

(both the girls and the coca-cola)

Yesterday.

2011-10-01T22:41:00.004-04:00

Yesterday was quite possibly the most difficult day that I have had in ages. More difficult that diagnosis, more difficult than relapse even. Difficult, dark and despondent.

While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.

We have a few options on the table:

1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.

All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.

When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.

For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.

Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.

Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.

What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.

"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"

(Proverbs 3:5-6)

Makes me smile.

2011-09-28T22:13:00.004-04:00

My Linley makes me smile.

There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.

For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.

Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.

I love that.

Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.

This just helps me to smile just a little more at each turn in my home.

(

(***the middle note reads like this:

Bunk bed rules
Not allowed under 6, but six and up you can

If you weigh more than 100 pounds you can

Linley is six.

If you are six you can come and if you are over six that is okay)

Now see if you can envision my girl composing little notes and not smile like I do.

Tomorrow.

2011-09-26T21:55:00.002-04:00

Tomorrow is Pipers much anticipated, long awaited bone marrow aspirate. Supposedly this will be taking place at 11:00am but the nurse/friend let it slip that there was actually a question mark followed by the word "tentatively" on the schedule sheet.

As my Piper would say, "fabaduss" and waiting for hours with a two year old who cannot eat nor drink is indeed as fabulous as you are imagining.

When Piper is sedated tomorrow at 11:00am ( or 3:35 or 6pm or...whenever) she will have marrow taken out to have examined intensely to see if there is any leukemia evident. She will also have methotrexate, arac and hydrocortisone administered to her spine to continue to keep the beast from invading. We will hear results within a day or two and that will give the doctors the information they need to make a plan. Because Pipers anc is now up to 150 and her wbc is up to 455 there is a chance that we will be going home within the week. So we wait...does anyone else see a pattern?

The powers that be over at the Bone Marrow Registry have found 11 potential matches for Piper. My heart leaps when I think of this...The knowledge that somewhere out there is someone who can quite possibly be prepping to literally save my daughters life is mind boggling. I can only hope. pray. wish big big big things. And wait...of course.

Last Saturday I met with 500 of my dearest friends from around the state. It was a luncheon intended to celebrate the mothers of the children in the area who are affected by various cancers. I was able to hug the neck of a mommy whom I love dearly...she lost her sweet son the day before Piper relapsed. I was also able to sit next to another favorite lady whose own daughter is thriving off of treatment. The extremes at which childhood cancer can range is amazing...and yet, I rarely meet a woman who is not able to do whatever it is that is thrust upon them.

Childhood cancer be damned but I am consoled by this motley camaraderie that it has made of women who really, just love our children and will do what it takes to raise them.

update 9/21

2011-09-20T23:59:00.003-04:00

At the mostly polite, definitely insistent encouragement of so many of y'all, I am checking in. Miss Piper has fallen asleep tonight before 10:00 and I have completed reading my issue of People magazine so all my procrastination techniques have expired. Not that I don't have things to update but rather I have the uncontrollable desire to begin raging/tirade/complaining about on here.

I wont, but I do that sometimes these days.

So Piper is well. She received 52 doses of chemo within the 28 days of this round. Amazingly she all but sailed through it without any major issues. A few low grade fevers were quickly abated with Tylenol and nothing has grown on any cultures done. Her CMV continues to lie dormant. Physical, occupational and speech therapies typically go well and she is using her new walker like a pro. Her hair began the falling out process but she is rocking the baby chick look. Pipers appetite vanished once the mouth sores began but she is slowly beginning to trust food again. Lortab has been a friend at times as she just generally felt bad.

Oh and she got 2 of her two year molars.

Oh yes...while on Lortab.

So, that was nice.

As some of you know, Chad, Linley and I's HLA typing came back and none of us are a compatible match for Piper. I'm not sure whether to feel relieved or despondent. Frankly, with the high rate of relapse with Piper Im not sure if I wanted this to be on Linleys sweet six year old shoulders anyways. Apparently there is no evidence saying that a related donor lessens the chance of relapse but a related donor does make things less complicated, both medically and time wise. At this time we are awaiting results from the bone and cord blood banks...our oncologist feels confident that we will be able to find multiple donors for Piper. Many people have asked to donate to Piper and unfortunately it doesn't work that way...not that I am entirely clear on how it works but go to www.bethematch.com and learn more.

We are still at the hospital because it is taking a ridiculous amount of time to have her counts rise to a level that is first, high enough to do the lumbar aspirate and see if she is back in remission and two, high enough to safely go home. Pipers ANC is still hanging out between 10 and 30. A normal child's ANC is between 2500 and 6000.

(Oh that Piper, shes always trying to get a little more attention.)

Once her ANC reaches at least 300 she will have her lumbar aspirate and we will see if those 28 days did the job. Then, hopefully we will be able to take her home for a few days and the Doctors both here and at Egleston will be able to give us a road map or a plan of attack, if you will.

And I will.

I am weary of this phase. "Attack" sounds good. "Attack" also sounds promising. I'm ready to get moving and get attacking and hopefully, prayerfully someday we will look back at this and rejoice we had the strength to put on our fighting gear and give it all we could for our sweet girl.

This strength is not ours but given to us from God...I cannot imagine going through this without the raw ache in my soul being filled with His hope and promise. His goodness is shown in the giggle of Piper at bedtime, in the presence of a Starbucks in the hospital lobby, the sweet smell of my 10 week old nephew sleeping on my chest while we reside in the same room as we did when Piper was first diagnosed at ten weeks old. His goodness did not end when my life began to feel a struggle, in fact it truly began then.

In this struggle I have learned to love, trust and rejoice.

That is a goodness I will never see anywhere else apart from in Gods grip.

A few things...

2011-09-04T23:06:00.003-04:00

All is well here. Piper is just amazing and her strength while going through the amounts of chemo she has endured is simply amazing. She is neutropenic, meaning her immune system is practically non existent. While this is the goal while fighting leukemia it puts her at a severe risk of infections. Thankfully she is still the hardy little Piper we all know and love...blowing kisses to the nurses as she pushes her little stroller around the floor. She has had a surprisingly low amount of side effects and we are so thankful for that. Unfortunately in order to kill the horrible, no good, very bad leukemia cells Piper will first have to be very sick (chemo first, then raditation and then transplant and those effects) before prayerfully she beats this monster.

So far so good.

And now...

Did you know that September is Childhood Cancer Awareness month? I didnt either until September of 2009 when we first heard the words "leukemia" and "Piper" used in the same sentence. Ever since that month I have had a daily reminder that cancer is not only for the adults...it effects children, infants and teens as well.

And here are the ugly facts:

-All child cancers combined receive 3% of the American Cancer Society's research funds.

-In the last 20 years, only 2 drugs were developed for child cancers.

-Each school day, 46 children are diagnosed with cancer

-Each day, 7 children DIE from cancer

-One in 320 children will develop cancer by age 20

-Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined

-Cancer treatment can cause serious side effects that may last a lifetime

-Relapsed Acute Lymphoblastic Leukemia carries a poor prognosis, 10%-50% survival

-Leukemia is the most common form of cancer in children

-Every year since 2003 federal funding for childhood cancer research has been CUT.

While these facts are indeed ugly you know our family is Hopeful. Not only for a Cure but for a Cure within our lifetime. In order to achieve this goal we have to work together. There is an amazing organization here in Atlanta that does just that...and this month in response to our beautiful children in this area who are fighting or once fought, they chose a few faces to honor. And my Piper was chosen this year. It is our goal to raise $1000 to go towards research and hope and a bright future. Anyone who is interested in seeing the amazing fighters and donating money towards such an very good cause in honor of my Piper can find the link here:

http://www.firstgiving.com/fundraiser/piperneedham/2011curekids

And please also check out curechildhoodcancer.org to see more of what CURE is doing for so many children and their families.

As Piper nears her 24th month of chemotherapy I am reminded of the beginning of this journey when two years of treatment seemed so very, very,very far away. Now we begin again with less optimism but a huge dose of Hope and I am still in awe of those who have fought the long fight. Want to have a small glimpse of the hell and heaven that the cancer life brings?

Check out chicagonow.com/mary-tyler-mom

This mom fought with her sweet daughter for almost 3 years and this month in honor of Childhood Cancer Awareness month she is doing a daily post with details of each of the thirty one months her Donna fought. Today is the 4th of September and it is the forth month of Donna's fight. Read and follow it...it is eloquently raw.

Tomorrow I will post more about Piper and life as we now know it. Tonight I am showing you a snippet of what childhood cancer means and how amazing are the fighters and supporters both.

You probably wont be a fighter but you should be a supporter.

"Sisters, sisters"

2011-08-28T21:45:00.004-04:00

"There were never such devoted sisters,
Never had to have a chaperone, no sir,
I'm there to keep my eye on her
Caring, sharing
Every little thing that we are wearing
When a certain gentleman arrived from rome
She wore the dress, and I stayed home
All kinds of weather, we stick together
The same in the rain and sun
Two different faces, but in tight places
We think and we act as one
Those who've seen us
Know that not a thing could come between us
Many men have tried to split us up, but no one can
Lord help the mister who comes between me and my sister
And lord help the sister, who comes between me and my man"

Because I lurve (not only love but lurve) old movies, I am required to love White Christmas. And I really do.

(Hello Bing Crosby and Danny Kaye!)

I also am a big fan of my sister. And when Chad and I found out that Linley was getting a sister we were thrilled...sisters are just such a novel concept, such a good idea God. Thanks for that.

Unfortunately when Piper was diagnosed and the last two years have been so very bad at times, the bonding part for her and Linley was ridiculous. A whole lot of one step forward and 72 steps back. When we were home and Piper was feeling well we were blessed to see them connect. When we were here and Piper was sick she could be downright mean to her big sister...such a horrible thing for Linley to go through. Many times I found myself crying because so much was out of my control and I so want my girls to love each other or honestly, just tolerate each other, OK?

Flash forward to May and bonding began happening. In the morning it was Linley that Piper called out for and it was Linley she requested her breakfast from and it was Linley she chose to sit with her on the couch and watch movies with. Often she was looking for her "nini" and often she was attempting to go and do what her big sister was going and doing. I don't have to tell you how joyful those tears were from me at those sweet times.

Now we are here doing leukemia again and one of my biggest worries has been the effect this was going to have on the girls relationship. Remember please, we are treating Piper for a cure and a future...hopefully one filled with bedtime giggles, girly makeovers and someday maybe double dates with her big sister. This is why we have Linley up here with Piper and us each weekend. Yes it makes the day busier and no the girls don't always get along but Linley and Piper WILL love each other, dag nab it.

The proof is from these picture I snapped this weekend...

8/27/11

2011-08-27T22:58:00.004-04:00

Things are moving along quite smoothly.

Piper has completed two of the three types of chemo that she will be receiving this month. She still is getting her oral innovative therapy chemo each day and that is going well and will be a daily thing until she has received it for 28 days..at that point she is going to have another lumbar aspirate to see if she is (please sweet Jesus) in remission again. Because all of her quickly growing cells, including any leukemia, are being wiped out, an infection is probable and thus it is easier to just have her stay here while being watched closely.

So what are we doing? You know...here in this amazing yes, but boring also hospital? Well, I always joked before that Piper and I had a busy daily schedule of dining out (icky cafeteria), shopping (expensive gift shop), and visiting the aquarium (big ole fish tank). And usually our friend the ever clunky IV pole has followed us around while nipping at my ankles. Good times.

This time around we are still doing the whole dinner/shopping/touristy gig but we have new and exciting excursions to add. The library! The garden! The playground! The elevator! The beautiful water fountain we aren't supposed to stick sweet little girl toes in! Thankfully (and surprisingly) Piper is still eating and drinking just enough to keep her off the IV pole unless she is getting blood/platelets/other yummy things...which is a godsend because the girl still doesn't walk independently.

Cheerfully yes, but not independently.

The family went Wed to have our blood work taken to see if any of us are a match for Pipers BMT. Piper received a low dose of morphine on Thursday after her sedation chemo because of pain but thankfully no fever. The orthopedics people are visiting this week to check out her left ankle (again). CMV is still undetectable in her blood work. She still has her hair but we are noticing a few golden hairs at a time in our fingers while stroking her head...and that for me is possibly the most difficult thing this week.

There is an awful lot of Elmo going on in this room these days. A million thanks to everyone who sent pj's, though I swear that was not my intention while yucking it out at Target. Our family is feeling the strength of your prayers, encouragement, and thoughtful gifts and notes whether you are family, friend, or a stranger.

Thank you.

Still here. Still breathing...send wine.

2011-08-24T00:02:00.003-04:00

Its taken me a minute to write because honestly I'm running out of words these days. There are only so many different ways to say "devastated"...and there are only so many emotions we are feeling at this time. For the most part the shock has worn off. We are still very much going "what the what???" but managing that pretty well in public.

I said before that the word relapse is much more difficult than the word "leukemia"...sadly, most of the families who face leukemia mentally prep ourselves for the possibility of relapse also. And while most of these families will be fine, those of us who are not walking away from the leukemia battle as quickly as desired will have to square our shoulders and muster on. Does it stink? Oh yes. But we've been here...we will do it again.

And that will be that.

Tomorrow Linley, Chad and I will all have blood work done to see if any of us are a match for Pipers bone marrow transplant. The results can take up to a month to get back so we want to get the ball rolling as quickly as possible. Please pray that one of us will be a fabulous donor and that the testing will be simple and as pain free as possible for Linley. (and Chad)

Piper has had 18 doses of chemo since last Thursday. Apparently she has no clue...her day is made up of going for walks with her "push" (baby doll stroller) with her blue latex gloves on and her little toy puppy attached to a leash she pulls with her. She loves to visit the fish and Mrs Zoe in the library. A trip on the elevator may take forever to get on and off of, but she will giggle with glee. Having done cancer with an infant, I must say its easier with a two year old...did I really say something is easier with a two year old? Psh.

Wed and Thursday nights are my nights at home. I plan to get a haircut. I plan to make Linley lunch with the daily love note inside. I plan to sit on my balcony and drink chai and read a little more of the book 1000 Gifts. I plan to walk barefoot. I plan to sleep on my right side. I plan to stay as busy as I can and not call Chad every hour to check on him and Piper.

I don't plan to dwell on the "whys" or "hows" or "what ifs" because frankly, that steals from my living with what I have now...two sweet girls, a husband and a God who gave this all to me. I'm learning quickly that a blessing isn't always a perfect gift or the answer to something you may think you want. Sometimes its just the knowledge that you're still here and still breathing despite having the wind knocked out of your sails.

Praise God.

Day 4.

2011-08-19T13:38:00.005-04:00

Day 4. Four whole days that we have known that Piper has relapsed. I know we were not certain until Wednesday but frankly, this mom knew. I knew the minute the nurses wouldnt talk with me about her bloodwork while at the ER in Athens. I knew the minute Chad spoke with Dr George and I sure as heck knew when my heart was aching as Chad and I drove the hour to the hospital with Piper sleeping soundly in the back seat.

For four days Ive woken with that sense of immense dread that only comes with having had your world rocked. I know from experience that this WILL get easier and I eagerly await that time.

As for now Piper is tolertating chemo well. She is having a fever about every 5 hours combined with mottled skin, fast heart rate and high blood pressure but thankfully once she is given tylenol she quickly goes back to normal. On Thursday she had 3 fainting episodes that were related to being anemic due to low hemologlobin which was quickly remedied with a blood transfusion. Piper is still eating well and keeping us very busy running around the unit. Without the Iv pole she would look like the picture of health...something I forget she is not.

Yesterday Dr Woods spoke with us about Pipers lumbar aspirate...she has leukemia cells in her spinal cord. (of 200 viewed, the pathologist saw 3 that looked leukemic) While this is definitely not what we wanted to hear, he felt like it would not be changing anything treatment wise. Her spleen and liver are also enlarged which is symtomatic with Leukemia...he expected them to be back to normal size within the next 2 weeks as the leukemia in her little body diminishes with all the chemo.

At this moment both girls are a arms reach away from me in the bed, giggling. Piper is loving having her "dissy" here and Linley is loving the role of being that beloved "dissy". Bonding is happening and it is a beautiful, while bittersweet, thing to see.

Despite high doses of chemo being chugged into my sweet Piper, despite our entire world being disrupted, despite the fact that I really miss having bare feet...it all fades when the four of us are together here in this room. Its the way it should be.

Target makes me puke.

2011-08-19T13:38:00.003-04:00

Chad and I came home last night to attempt to explain this to Linley. Now that Linley is in 1st grade she "gets" this alot more...shes fearful not only of loosing her sister but of being left behind when Chad and I are with Piper. Thankfully Linley took the news as well as she could and is willing to be tested to see if her bone marrow is a match for Piper...please pray that it is.

While Chad was in class and in between calls to my mom to check up on her with Piper I ran to Target to grab things that I was needing for this hell of a hospital stay plus the basic things needed here at home. Usually Target is my happy place and today I decided to put aside my (snotty I am sure) oddities that I have with clothing with characters on them and look for some pjs for Piper with Elmo on them. My girl loves her some Elmo. So I looked and looked and only found a pair in a 3t...then I went over to the singing cards and looked for Elmo something over there but the only Elmo card I found was a "welcome to preschool" card.

I could feel the bile rising in the back of my throat. I made it out the front door and onto the sidewalk before throwing up what little I have eaten lately. I dont know if Piper will ever get to wear a 3t or go to preschool and the nausea and desperation I felt at that moment was simply to much to bear. I cant lose this child.

Now I have spent the day doing some crying, some cleaning and some sitting with a friend who came to help me fold mountains of laundry. In a few minutes I have to pick up my beloved Linley and finish packing and head back into the hospital. Pipers chemo has begun and she is missing her mommy. From this moment on, it will be Chad and I playing an intrecate game of Tag to enable that Linleys needs are met as well as Pipers.

We are moving from shocked mode to survival mode...though the emotions that we are feeling are well beyond what those two little words can ever portray.

8/17/2011

2011-08-17T20:14:00.003-04:00

Piper has relapsed. Her leukemia has returned. Tomorrow at 2:00pm she will be sedated and have a lumbar aspirate to gather more information. They will also begin her on her first dose of chemo, once again.

I cannot tell you how devestated we are. How broken my heart feels and how heavy my spirit is...you probably would never understand. This was totally unexpected, Piper has been nothing but the picture of health and happiness. Our family was beginning to get a grasp on "normal" living and now this...

Basically we have 2 choices. We either fight this, given little chance that she will be cured or we stop fighting, knowing that this will take her little life. In chosing to continue the battle Piper will receive about a months worth of new chemo intended to get her body back into remission. If that works, they will follow with a second round of heavy duty chemo. And if she is still in remission at that point we will be taken to Egleston where Piper will have a Bone Marrow Transplant, hopfully with one of us as her donor. At that point if all the steps we have taken have kept her in remission and the BMT is considered a success she will have a 20% survival rate.

Obviously this decision is not a difficult one as Chad and I feel strongly that not fighting is giving up and that is not our style. Beginning tomorrow we start all over. Piper will lose the beautiful hair she has, Linley will work her way through 1st grade without her family at her side and Chad has to reevaluate all his current plans for school and work. Again, we are totally devastated.

I cannot see the future. I have no idea what is to come, not only for Piper but for all of us. If you want to know the truth I am scared witless and I am spending the day sobbing uncontrolably. I wanted, no needed, our little family to begin to mend and to be able to look at this phase of life as a season instead of our normal. Facing a relapse is even more frightening that the initial diagnosis. I now know what this does to our family, finances and plans...it is ugly.

While I have no idea what happens in the future, I still stand firm on the knowledge that God is sovereign and that He has a plan. I fear the prayers I am sending up are not filled with faith but rather with pleading but I rejoice that He knows my heart, my girls and my life. At this moment, sobbing at the computer with strangers around I feel much like a tree that has been beaten by the weather. I may look to be bent over, I may be weathered to a indescript gray but I am still rooted in the soil that give me sustanence.

Of this I am certain, God is still good.

2011-08-16T23:00:00.002-04:00

At the hospital with piper. Her bloodwork came back with suspicious cells and they are assuming a relapse. Please pray that this is not. Relapse is even scarier than the initial diagnosis. They are rerunning bloodwork and other tests and we should have some answers tomorrow.

I know God is bigger than all of this, I just wish we weren't tested so much.

Im a new fan of peer pressure.

2011-08-12T22:18:00.004-04:00

Not in the whole Toddler and Tiaras sort of way, or heaven forbid that ridiculous show I watched reruns of at midnight called Dance Moms. No way Jose...I can not imagine pressuring my daughters in such superficial ways.

But for walking? For my 2 year old? I had to do a little compromising. I had to look at her little sweet face and tell her "Gunner can do it, can you?". Seriously though, she is two years old and her legs are strong, its her balance we are working on. And in the last 48 hours she has begun to let go of her stroller/couch/wall and balance herself while I count and cheer her on. And today I was watching my nephew Gunner while Piper and I were working on her balancing and she fought me, as she does everything, until I said "Gunner can do it, can you?".

She did it. I counted to 14 while she did it then she slowly dropped down and continued to smile proudly.

Peer pressure and petty girls? Negative.
Peer pressure and balancing solo? Yes please.

1st grade for Linley

2011-08-10T21:46:00.004-04:00

When Linley was born I quit my full time nanny job and chose to stay home with her. I never desired to have a career and I was fine with "just" being a stay at home mom. Since her birth I have held down a few part time jobs usually with her in tow. At times she would spend the day with her Nana, but I still held the title of stay at home mom in my eyes. And I liked it like that. I loved being with my Linley...she was then and is now, a joy to be around.

Maybe thats why sending her off to school each morning has been tricky for me at times. I miss her when she is gone. This year Linley is attending a Christian school and I have to say that knowing that her teachers are trusting God makes me trust them a little easier. We chose to change her schooling because I firmly believe that each child has specific needs. And what works for one child,one year may not work well for another child, another year. Linley always seemed like a fish out of water in the local public school. Here she is known by name, she has already been noticed as a strong reader and she is gaining confidence within her class and with her homework. While it is a financial commitment, knowing that they are supporting Linley as a unique, special and God given gift, is worth every penny. And as an added blessing, she has classmates whose mothers have been supporting our family through our mutual church and bible study as well as her teachers aid being the mother of a leukemia survivor.

Here she is in her sweet uniform. I know, uniforms...no more glittery high top sneakers and polka dots for her until after 3:00pm. But seriously, how can I mind when this is how she pulls a uniform off? Beautiful girl. May God bless you this year with friends, confidence and smarts, my sweet firstborn. I love you so.

facebook stinks

2011-08-08T22:22:00.005-04:00

Yesterday I hated Facebook. To be true, I often hate it but find it to be a integral part of maintaining friendships with people I have met all over the world...plus I am nosy by nature.

But yesterday I was annoyed, unbalanced and overwhelmed with the differences in each new status that popped up. At one point I had a father asking for prayers for his sons lumbar puncture, that no cancer would be evident. And directly below that was a woman complaining about still being pregnant with a healthy child. Another woman was posting pictures of her beautiful daughter who recently was born without her left arm. And below that, someone complaining about having to work that night. And I know that all of these people are wonderful but truly, truly, truly I am baffled at what people get in a snit over.

I also had to leave a mothers group because I couldn't hear anymore about teething troubles or what to do when someones 5 month old was still not sleeping though the night. My tolerance and grace well has gone dry although I am as usual, the one who most needs both of those things. Instead I am totally dry and I am at my wits end these days reminding myself to appreciate my own two daughters to focus on insipid complaints from people who are not able to enjoy the blessings they have.

The father who waited to hear results from his sons lumbar puncture has now been notified that the cancer is within the spinal fluid as well as in his young sons liver. At this point he will be going on his Make A Wish and his family will be left to enjoy his last days with him. Can you imagine that?

And the mom will have her healthy child and another mom is loving her beautifully different daughter and the other person will be paying their rent with the job they don't appreciate. And I will be attempting to push my immense fear at ending Pipers treatment into a dark corner of my brain while appreciating how healthy and happy my daughters are today.

That's the only gift I can give you Story family, I can appreciate and love on my girls the way you have shown me to. To complain about anything right now is wrong. And this goes for you too, readers. If you are finding your little life too hard at the moment, know that you are blessed enough to even have the simple mental capacity to do so. Fathers, spouses, daughters, lovers, friends and neighbors have breaking hearts today and would do anything to have your frustrations and stresses.

clinic visit 8/04

2011-08-04T23:25:00.002-04:00

I have much to say but not really much talent in wording things well. I also stutter should you ever know me in the flesh...its especially awesome when I get on a tirade. (of course, this is crazy rare) I imagine then, that this will be a post with a plethora of "verbal diarrhea" as I call my rantings, raving and/or rabbit trails. Lets see how well you can follow along.

Today Piper had her 2 week checkup since being discharged from the hospital due to that amazingly sneaky virus of which we have no name. She is doing wonderfully. Eating, attempting to get around and basically being the silly two year old that she is. When Piper was admitted, they stopped her chemo both the daily 6mp and the weekly Methotrexate in an attempt to get her counts back in the typical Maintenance range. Today her counts looked great...still beautifully normal. And I thought that they would restart both the chemos I mentioned above as well as her monthly Vincristine. But nope.

Chad said that the final decision will be made tomorrow but at this moment they are planning to stop her treatment. Piper is due to have 6 more weeks of chemo before ending her two years of treatment in mid-September. This honestly freaks me out. I know the steroids are doing a number on her bones, I know her immune system is shot and I know ending chemo would do wonders for her...but I was not prepared for this. I wanted Piper to receive the max amount of chemo within her two years, not end prematurely.

When Chad relayed his conversation with Nurse Lois and watched me put on my angry eyes, he only laughed and said that Lois was prepared to hear from me tomorrow. I don't want to be " that mom" but thankfully these people are accustomed to me and my questions and opinions. They still look forward to see Piper and I walk in the door so Ive not bothered anyone too much yet.

So blast it all they want to be done. No hoopla, not big to-do, just an end. The concern for an infection, virus or bacteria now apparently outweighs the concern for leukemia. I'm not sure if I should be comforted by this or up in arms. Being the persevering woman that I am, I see Leukemia as a very targeted and specific enemy...an infection, virus or bacteria are possibilities and those my friends, are easy to mentally side step. I don't want to stop this fight yet and I don't ever, every want to see this beast return and I cannot help but worry the two could easily go hand in hand.

Tomorrow I will be making a call or two. I am praying for peace and I am praying that they are receptive to my concerns. I am also praying to remember just how far we have come and that God reminds me of this when I find myself clinging to the ceiling.

(I knew I should have gotten that medical degree because then I could be mom AND the doctor and thus, the boss...more chemo for all! fight on little cells, fight on!)

Piper+dehydration= Scottish Rite

2011-07-29T23:51:00.005-04:00

When I last posted, unbeknown to you, I was in the midst of spending 8 solid days watching mindless television, being brought three square (ish) meals a day on a tray, and visiting with a lot of wonderful women in sweet uniforms.

(Aaanndd...I just realized it sounds like I spent a week in a mental hospital. Or possibly jail. Fabulous.)

Thankfully, it was neither of those things because I have no time to break any laws nor the time to fall apart, though I have penciled in a period of melting down once Piper successfully completes treatment this fall. I shall call it Planned Post Traumatic Stress Vacation and I am uncertain as to whether I will be allowing anyone to come with me on this experience.

But I digress.

Today is Friday and Piper and I came home from our little Scottish Rite vacation on Wednesday. I had a hard time posting because we were having such a great time being on isolation, pooping a lot (Piper), cleaning poop up a lot (Myself), watching an awful lot of Elmo,hiding food from a two year old and trying to keep Piper mobile while attached to a ridiculously loaded down IV pole. Don't be jealous of how I spent my summer.

Thankfully, after rushing in through the ER Tuesday night and finding Piper pretty dehydrated, they admitted us pretty quickly and began the battery of tests that go along with being a leukemia patient acting ill. Blood tests, stool test, TPN, fluids, semi gut rest and random fevers all added up to "a simple summer virus". Yep, that's what those Dr's said. Unfortunately for Piper, her immune system is a joke at the moment and when she feels bad she stops eating and this combined with the diarrhea she had recently begun having again well, dehydration was the order of the week. And because she randomly was having fevers her visit stretched to 8 amazing days.
We finally broke out of there and have been home for 2 days and all is back to normal. She is totally back to the silly, sweet Piper we know and love. I am always amazed at how quickly she can go down hill and how quickly she will bounce back. The only thing we are changing up is holding her weekly and daily chemo doses...She has a appointment this week to check everything out and hopefully start things back up.

So, what did you do this week? I am totally caught up on my Elmo episodes should anyone want to know how he and his blankie are. And because I have the lowdown I will suggest you not show your two year old anything about this furry red monster...its a doozy of a thing to have constantly running through your brain, memory and dreams.

Trust.

Hopefully Refined

2011-07-21T22:49:00.003-04:00

About 2 weeks ago as I was dozing of in my fabulously comfy bed, I was mentally planning out the next day and rerunning parts of the day past and suddenly the thought hit me " Susanna, you totally forgot to get refined!"

Oh my, oh no.

You see almost 2 years ago when my sweet Piper was diagnosed with infantile leukemia and I was totally and completely overwhelmed with what all that was going to mean for my newly made family of four, I remember being told often that God was in control. (true) And I remember being encouraged many times over the months that God was "refining" me. That He was taking this horrible, no good, very bad news and using it to refine me as a Christian, as a wife, as a mother and as a woman. That He was going to walk me through the pain of this fire in my life in order to become cleaner, more pure. Hmmm.

I still say Hmmm. I looked up the word "refined" on dictionary.com because I am currently lazy and it says this:

Refined: adjective
1.
having or showing well-bred feeling, taste, etc.: refined people.
2.
freed or free from coarseness, vulgarity, etc.: refined taste.
3.
freed from impurities: refined sugar.

Well folks, that doesn't sound much like me. I mean really, my daughter knows how to correctly use a 4 letter word and I rarely wear matching clothing. The part I most find shame in is the "freed from impurities", because I am a work in progress. For reals.

I planned on becoming refined over the course of Pipers 2 years of treatment. I envisioned myself more patient, more kind, more giving, less snarky, less lazy and less questioning. People would look at me and know that I was wise. I would become the mom I dreamed of being and my husband would sing my praises. Well, Piper completes her treatment in September of this year. So, that's basically less than 2 months of refining I have to cram in. Possible?

Who knows. I do know that while I hardly feel refined, I do know that leukemia is not the only trial I will go through and that someday when I stand at those fancy pearly gates and God is going to look at me (probably similarly to the way I sometimes look at Linley and Piper when I just don't get why they don't get what I am trying to get them to do) and still open His arms up and let me in and then, and only then will I be fully refined.

So long story short(er), I am not through being refined. Not one bit...but I am still faithfully married, I still pray over two daughters before bed, I still rely on my soul friends, and I still desire thoroughly that God will continue this work He began in me. Not only the work I was when I first loved Him, but even more so when He first showed me what it is to walk through fires and come out not scorched, maybe a little scarred but probably a whole lot of Hopeful.

my blog? Oh yeah, that.

2011-07-14T21:50:00.004-04:00

For lack of the mental effort it would take to make excuses for not keeping anyone/everyone updated I will instead make a a list of what I have been busy doing since coming home from that amazing vacation to Tybee Island.

Not to brag, but rather so that I can remember. It has indeed, been THAT busy.

1) Monday: packed the entire apartment up.

2) Tuesday: spent the day, kid free, with the spousal unit at IKEA celebrating our
7th Anniversary which was actually the following Sunday. (I think)

3) Wednesday: moved majority of belongings into new apartment

4) Thursday: celebrated Pipers 2nd Bday by getting her a new "big girl" bed

5) Friday: Pedicures and lunch with the ladies in my family prepping for my sisters induction the following day.

6) Saturday: farmers market and then spent the day waiting for Braxton to arrive

7) Sunday: Braxton Clyde Grant graces us with his awesome cheeks after 28 hrs of labor!

8) Monday: woke up to the news that my sister in law had delivered their son five weeks early. After taking Pipers to her 2 yr check up I packed Linley up and rode with my dad to Fayetteville NC to meet the amazing Nash Teague Martin and to kiss on his big sister.

9) Tuesday: slept the majority of the trip home from NC and perked up in time to cuddle my own sweet Piper but also get a few kisses from Braxton.

10)Wednesday: playdate for Linley and lots of attempts at unpacking my own home as well as a late night chai and m&m date with a good friend.

11)Thursday: dragged both Chad and Linley to a early morning sedation/spinal chemo for Piper and cheered because while she was totally rotten at the clinic, it was her very last sedation EVER!

12)Friday: tomorrow I plan to help a friend move and not deny my mom and Aunt the chance to watch my two sweet girls while Chad and I go fall asleep at Barnes and Nobles...aka: have a date night.

Sounds like fun? It actually has been...I have had some sweet moments with both my new nephews and was suggested a Tylenol by my own daughter when I spoke of my renewed "baby fever".

As if.

Now that I have a true list...(And apparently my memory!)...I will spend some time adding some pics of all these sweet little newbies to the family and also of this new apartment with so very many modern amenities.

And if I am going to be all wild and crazy I may actually catch up on some of the goings on from oh, six months ago. Like the fact that Linley had a rockin' party to celebrate turning 6. Or that Chad and I ran to the mountains for five heavenly days. Or this amazing chair I found next to the dumpster...Maybe I should just take a Tylenol and hush about expanding my own family until things are semi caught up.

As if. :)

Hello, 2nd of July

2011-07-05T01:40:00.004-04:00

..Its nice to meet you. I know your sister, the 4th of July but this year we chose you to celebrate on simply because you fell on a Saturday.

As we have done for the last 3 years we went to the tiny town of Gratis for some of the best and longest display of fireworks around. Piper is still not walking solo but she definitly is attempting to keep up with her big sister and they both had a great time at the nearby playground, playing with glowsticks and eating rice crispy treats with our sweet friend Zoe (oh yeah, and her mom and dad).

We literally drove home from the beach, dropped our bags off, played a game of Operation and let Daddy nap for 30minutes then ran back out the door to grab dinner and meet up with the rest of the party to celebrate. Thankfully I was fully rested and thankfully Linley LOVES fireworks and Piper just wants to cuddle when they are going off so it was a most enjoyable night for all of us.

Tybee Island, GA 2011

2011-07-05T00:59:00.005-04:00

Years ago I was a nanny for 2 little (incredibly adorable, now incredibly tall and grown up preteens) boys. Each of my days were spent playing Thomas trains, watching Thomas the train movies and eating little mini pizza sandwiches. It was fun and it was obviously busy. One day I told the oldest I was "losing my head" and that sweet 4 year old thought that was the most hilarious thing he had ever heard. Each day from that moment on until I left to care for my own little daughter he would ask me if I had my head or if I had lost it yet.

To this day, I still hear his laughter every time I feel busy, crazed or super fun.

And as you know, my life is a little hmmm...busy? Crazed? Super fun?

Thankfully my inlaws decided we all needed a little vacation and they booked a week for us all at Tybee Island. Last year we went to Daytona. I have to say I think we traded up this year.

Tybee was beautiful and relaxing and all the things a vacation should be. We spent hours on the beach, ate much shrimp, visited Savannah, rode bikes and focused on doing nothing else. As usual for my girls, they kept Chad and I on our toes since Piper loved the sand and hated the waves and Linley loved the waves and hated spending time in the sand...basically he and I just played tag and traded girls off and on until a grandparent stepped in and saved us. Both my girls proved once again that they have their daddies great skin tone and not their mommies tendency to burn despite SPF Way Super High.

It was a wonderful time for this mommy to find her head once again...

Happy Summer y'all!

2011-06-22T23:38:00.004-04:00

Apparently the official season of Summer began yesterday.

I did not know this since my daughters school has been out for 5 weeks, count it, FIVE weeks. After the initial thrill of late nights and mid day movies, The Boredom Bug has definitely bite my little girl. I had forgotten how summer days can be so very long when Mommy wont chauffeur on demand and when play dates are not a daily occurrence even with as easy going of a little girl as my Linley.

But I believe I have underestimated my daughter.

Underestimated her ability to be so easily bored and...

...equally underestimated what lengths she was going to go to in order to find her own little version of fun when its laundry/errand/cleaning day.

So Happy Summer to all you mommies trying your best!

Dream Night at Zoo Atlanta 2011

2011-06-18T15:09:00.007-04:00

About a month ago we (and by we, I mean Piper) recieved a postcard about a free evening at the Altanta Zoo for patients battling "life threatening" illnesses and their families.

Sign me up. First off, I was more than thrilled at their wording. And I know that "life threatening" illness may not sound so encouraging to you but to a mother who is not easily threatened, it placed cancer into a nice, neat and not so scary sounding box. The phrase "terminal illness", however, makes me want to run for the hills for the sheer finality it screams of.

So yesterday I grabbed up my daughters, my husband and my very pregnant sister and her husband and off we went.

I didnt blog about the Zoo visit in March during the great Poopalooza in which my 1 year old literally pooped through 6 diapers in the first thrirty minutes of being there. You can only imagine how fun that was for us all hauling around a fussy, weak, pantless, NG tube attired daughter...and trying desperately to make Fun! Exciting! Special! memories for the wonderful six year old sister and her cousin.

What a difference three months makes...

Clinic Visit 6/09

2011-06-11T23:46:00.003-04:00

Friday was Pipers monthly clinic visit and for the first time since her diagnosis in September of 2009, I was only in Atlanta ONE time in a months time. ONCE. I almost got lost on the way to the clinic, it had been so long.

It has not been uncommon to be in Atlanta 2 or 3 times per week, and it has been a given that we would be there at least once but this, well this I can really dig.

Of course, a day at the clinic seems a million days rolled into one. A 10:00am appointment means finally leaving with the rest of Atlanta at 4:30pm on a Friday afternoon but praise God for my mom (whom I roped into joining myself and Piper) and my best friend (who happily added Linley to her own girly group for the afternoon) who both rock my world and helped get me and the girls to the preplanned dinner date we had at 7:30.

Pipers counts look great, chemo went smoothly, IVIG was successful. Piper enjoyed the play kitchen, singing with the music therapist, eating pizza and doing a little coloring. I am always amazed at how very little this girl will sleep for me there at the clinic...she gets benedryl AND tylenol before beginning the IVIG infusion and STILL she only cat naps. Amazing.

I was reminded that we are beginning the countdown. Piper will finish her treatment in September of this year. I wont lie and say that the thought of finishing treatment is scarier than the thought of continuing. Relapse is always at the back of my mind and chemo always seems such a barrier...I fear for what her body will do on its own.

Like, seriously fear.

Unfortunately, since Pipers diagnosis I have struggled with insomnia. Both at home and away. Because I know this, I plan to keep myself especially busy the night before any clinic visit. Thursday night was no exception except Chad had to work so it was just me and the girls here overnight. I read, cleaned, watched mind numbing television and finally at 2:30 am I began to get droopy and wandered into the girls room for a final check. Just as I opened the door, Piper sits up in bed and smiles at me.

I melt. Like I always do.

And I brought her into my bed to cuddle for a minute but she just kept looking for her daddy so we called daddy at work and definitely surprised him. She was thrilled. Then she rolled over next to me, closed those sweet blue eyes and began to hum. I began to cry. It dawned on me as I was scratching her back and she was humming at me that I had not heard her hum herself to sleep since she was tiny. Remember that Piper dealt with temporary vocal paralysis when she was in the midst of the first few months of inpatient chemo? She did and it broke my heart because Piper came out of my womb humming herself to sleep and never picked it back up again when her voice regained its ability. So to hear her little self humming as her eyelids slowed their twitching and her hand rested under her chin just like my hand would itself once I fell asleep...well, I melted. And cried. And then did both all over again.

I am fearful of what this fall brings. Especially as I begin to see who my Piper is. I fear the possibility of what could be but when I experience moments like those, time seems to fall away and I am able, for a minute, to relish it without the stifling fear that seems to attack me at a moments notice. Thank God for those moments, indeed.

"Hey, its okay"

2011-06-10T00:07:00.007-04:00

- to not be able to stop laughing at the part in the last post about my six year old wanting to "drink the juice" at church...we totally only do that on the full moon when all the snakes are more easily manipulated. (must I say I am kidding here?)

-to take 5 days to clean my super small bathroom. One day for the sink, one day for the toilet, one day for the shower...take a break day 'cause that part is a doozy and finish up with the floors.

-to like the show Mob Wives mainly for the music but also for the one wife who is not a shrew nor a shrinking violet.

-to allow your almost 2 year old to climb on the counters because it seems an awful lot like physical therapy to this mommy.

-to think the word "naughty" just plain sounds naughty. Like, keep it in the bedroom, naughty.

-to still be awaiting the day I can apply lipstick better than my daugher. Either of those daughters.

-to not understand why some people wear shirts that have wording on them unless they want you to read it. And I cant see very clearly so if I am squinting at your chest while you are walking towards me, my bad.

-to have daughters that dress significantly better than myself.

-to want to live in an era or a country that encourages ladies to wear those awesome hats that we saw at the Royal Wedding.

-to not taste the food I cook as I cook it...it give me the heebie jeebies which probably now means that I will never have a dinner guest again because everyone now probably thinks my cooking stinks.

"bathatized"

2011-06-01T23:13:00.003-04:00

My Linley wants to be "bathatized", that is.

We often talk about Jesus in this house, because well, He is the cornerstone of all we attempt to be. And we are honest with her about how He loves us all but many dont love Him back. And we have begun explaining to her in the last few months what must be done to take communion or get baptized or call herself a Christian.

Tonight she brought it up. Like most nights I chatted about it a little and prepared to leave the room with a kiss, never wanting to coerce her into such a decision. My sweet Linley had other plans. This is what she said...

"mommy, I want to be "bathatized". But not just because I want to drink the juice with you on Sunday but because I talk to Jesus alot at night and because I trust Him now and because I want a best friend for forever"

Ahhh. So we prayed together. And went to tell Daddy. And prayed some more. And in her childish little six year old voice she asked Jesus to come into her heart and be her best friend. I followed her beautiful plea with a more emotional one of my own and we held hands and she then teared up "because she was so proud of herself". Again, it was lovely.

So for you, my firstborn, my little me, my sweet and observant light of my eye, I pray that you never walk away from the decision you made tonight. I know you are simply six today but I also know just how easy the faith of a child can mature into a faith that stands the test of time. I pray that for you...and when you feel like God is so very far away or like the world is so very appealing then I will praise God for that amazing blanket of Grace that He lays at the feet of anyone who beleives in Him. I pray that you will cover yourself with it when, not if, you feel at odds with how things will sometimes be in your life.

God is so good to us, sweet Linley. He will never leave you or forsake you and He will always, always, always love you with an unending Love. Cling to Him.

Thirty Shmirty

2011-05-31T23:05:00.002-04:00

I have never been a big fan of numbers. And not for lack of opportunity since I found myself in the same math classes over and over again in high school and college.

I have just never understood the way the darn things worked together so easily for some (obviously odd) people. As for me, I enjoyed other parts of academia. English...no problem. History...fascinating. Science...all good until chemistry reared its ugly, complex, and often numerical head. Surprisingly, I can still count in Spanish but I think its simply because I use words to do so.

Even twelve years after graduating high school with good grades in everything but math, I still find myself dumbfounded by simple multiplication tables at times. And I have been known to count on my fingers and if necessary, my toes. When I lived in St. Petersburg, Florida for a season I often found myself driving aimlessly down their numerical streets and avenues. I never could get the gist of going down 31st Avenue and taking a left on 63rd Street...give me Smith Road to Azalea Lane any day. During a brief stint in cosmetology school I was being taught to add a third of this to a quarter of that and my thoughts would immediately begin contemplating what new color I should paint my toes or if I thought I should bring a book to the beach later that evening.

Have I made my case yet?

Obviously there are few things that I relish about numbers and the things one can do with them.

But while numbers are so not my thing I am pretty proud of my new one, "thirty". A lot of my friends fought turning thirty. Some said they felt old. Some said they didn't like the way it sounded. Some aren't where they wanted to be at thirty.

Me? I'm cool. Its a nice and even number. It wont have me failing a test or getting lost. It will serve me well, I believe. I had big plans to make a list (I dig lists) of 30 things that I want to do when I am thirty so...

1) get lots of duct tape for this marriage of mine
2) special bonding with my sweet six year old
3) the beginnings of a lifetime cancer free for my almost 2 year old
4) more babies? perhaps? pretty please?
5) an apartment with two toilets.
6) the ability to drink coffee without grimacing.
7) a hobby that brings in a little money.
8) knowing my God a little more every day.
9) patience. lets get lots of that.
10)learn to say "no" to Edys Rocky Road ice cream...just once in a while.

Obviously, I have not reached thirty goals for spending this year of thirty. You know, numbers and all. Plus I don't want to be a blog hog and I feel like my point has been made. I had a birthday and I am okay with being 30, especially if I can spell it out like this, "thirty"..

1 year down, twelve to go.

2011-05-19T22:52:00.005-04:00

Remember this sweet Linley?

This was way back when. You know, when you were 5 instead of "almost six and a half". Back when you liked your hair short because you so disliked brushing it out. Back when you could read a few sight words and count not so high. Back when you had not yet met your classmate Darius and learned all about Micheal Jackson. Back when pink was the only color you wanted to wear and when your favorite snack was go gurts.

Flash forward about 8months and you are so very grown up. No longer tied to a pink fantasy you now love turquoise or better yet, fushia. You have shown an incredible aptitude for reading. You have been known to write a very detailed description of a rough morning when mommy threatened to sell you at Walmart. You have found science to be much more interesting than I ever did. You have told the faculty at your public school all about Jesus's Birthday, aka Christmas and let them know we dont like magic. Your confidence is growing by leaps and bounds and your compassion is as deep as those sweet blue eyes.

You have proven to anyone watching just what I have always said, Linley Coe Needham is Especially Special!

(Next up, First Grade)

Clinic Visit 5/16

2011-05-16T22:28:00.004-04:00

Today was Pipers monthly clinic appointment. Of course, I say monthly with a smile on my face because we are more often than not there each week, often two or three times a week. But thankfully, things are most definitely on the up and up. Piper is doing wonderfully. All of her counts and numbers are beautiful and show no signs of anything worrisome. Her CMV results will be back in about 48hrs and we will surely see her virus levels staying suppressed.

Pipers monthly clinic visit is always the same. Vitals, blood work, chemo: sometimes spinal and sometimes not, and then a 4 hour transfusion of IVIG. And today was the same. All went smoothly, so smoothly that Piper is restarting her original protocol.

The maintenance protocol for most leukemia patients is typically the same. Clinic visit every month with a port access for chemo and blood work. Every third month she has sedation with spinal chemo and the other months she has Vincrisitine in her port. After each clinic visit the patient has 10 doses of Dexamethasone given over 5 days and then the patient finishes up the month with oral 6mp each night and an oral dose of Methotrexate once a week. Then it all starts again.

Piper has been held off of steroids since January. She has been off of 6mp and Methotrexate since March and has only received her monthly chemo in the clinic. This has made me very nervous because I want her little body to receive all the chemo it can handle until this September when please Jesus, she is done forever.

Thankfully today, Dr B made the decision to restart all of her chemos and steroids. I am certain that by Wednesday I will be rethinking my excitement over it in the midst of some serious steroid attitude but until then I just continue to pray that each little dose is doing big damage to any little cell that has dared to hide out.

As for today, she was a joy. At almost two years old we are only just beginning to see what type of a little girl we are raising. She is sweet and silly and I am impressed daily with what she has already overcome.

Have I mentioned how very much I love this little one?

Mothers Day 2011

2011-05-10T00:34:00.003-04:00

I love my husband. I love my children. Because of those three beings in my life, I have a new respect and admiration for my lovely mother.

You see, my mom is quite possibly the best thing since sliced bread.

She has been the most selfless and encouraging soul to walk besides me. She builds me up and shows me my strengths when I feel empty. She lovingly chastises me and shifts my mind when I am wallowing in the mire of my feelings. She rejoices with me when my life feels blessed and sobs with me when I am kicked to the floor. She finds the itsy, bitsy silver lining in the sky of dark, dreary clouds and sets her gaze on that. She is the epitome of a Proverbs 31 woman and her faith in God is the anchor to which I tie my recent wandering ship. She is lovely.

I am a wife. I am a mom.

Someday I hope to have half the grace my mother has.

Today I will prove that I do listen to you, mom.

Being your daughter has taught me...

1) That yep, cleaning the kitchen before bed DOES make the next day begin more smoothly

2) That "sneaky" is indeed a very annoying trait to see in people.

3) That my daily chai also tastes better the color of the coffee table.

4) That midnight is the best hour of the day.

5) That 6am is an ungodly hour.

6) That I should have gotten a hobby when I was a teenager.

7) That a stash of sweets are best hidden above the oven/stove/range.

8) That parenting is best done with a mix of conviction, prayer and grace.

9) That gardening is salve for the soul.

10) That life is best lived as an opportunist in every way.

11) That beautiful bed linens are a worthwhile splurge.

12) That knowing all the locations of local bathrooms will make my life much easier.

I love you mom.

"Hey, its okay"

2011-04-28T09:36:00.003-04:00

You know the drill. I do a little ranting and raving and you either laugh or judge me. Its your call...I'm pretty indestructible these days. :)

So...Hey, its okay!

-to run out of Tupperware and use all of Pipers sippy cups instead

-to really wish that Chad were gone from the house during the week. Having him in and out because of classes throws off my mommying technique.

-to not think that 3$ off a $40 dress is a big enough deal to call it a sale.

-to sometimes air dry some of my bigger pots and pans in the turned off oven for lack of counter space.

-to sort of/kind of/maybe so look forward to getting up tomorrow morning at 5am at Linley's insistence to watch the Royal Wedding.

-to wonder if sleeping in is a valid enough reason to decide to home school next year.

-to actually not be frightened at the idea of a 3rd child. Of course, my uterus and Chad are sure to make a stink about this and really, the two of them never listen to me anyways.

-to hold my breathe every time my debit card is being scanned.

-to send Chad out to the grocery store when I hear there are storms and tornadoes possibly coming our way, but not for bread or flashlights. Nope, I wanted ice cream.

Big Time Saturday Night

2011-04-19T00:09:00.006-04:00

You know us college kids. Marriage and little-uns haven't slowed us down. We can still get a little crazy on the town on a Saturday night. And we breed some sweet little ladies who can hang like the best of them. See the proof...

Seasoned bus riders or kids with parents who dig free university transportation?
You decide.

See the moms? See the cardigans? See that gleeful look in their eyes? They are all gussied up and not cooking dinner tonight, my friends.

Piper smiling. Hawaiian roll. Both are familiar with the other.

Fact: UGA students drink super much at 6:30pm and the North Campus is safely away from all that jazz.

Fading children need Starbucks hot cocoa. Its true.

Somehow my dancing to entertain quickly fading little girls didn't faze the majority of passerbyers. And I am no dancing queen by a long shot.

See? Its always nice to have a night on the town. And its even nicer to have obedient and sweet children and fun adults who can count their dollars and splurge on a good old fashioned married with children Saturday night on the town. Thanks for that you other wild and crazy college folks.

Leaving!

2011-04-12T22:10:00.003-04:00

And we are almost out of here. I am thrilled. Thinking of sleeping in that soft, cozy big old bed with my lover and with both sweet girls across the hall is fabulous.

It will be a little odd to not have some strange nurse poking their head in the door with the nurse who is leaving at 6:30am just to "make sure Piper is here". Seriously? Was sneaking out at midnight an option? Or the wonderful, highly educated doctors who open the handle to the room, crumpling the note that I place right there that says " Piper is sleeping...please come back later" and walk in speaking loudly and looking around for her. And no, you may not take a listen. She is here, ask the nurse. She is well, ask me. Thankfully the therapists are great and my Piper is leaping and bounding out of here.

Two weeks ago, she struggled to sit unattended for long. Today she is going from sitting to a crawling position and back again. Two weeks ago she could not stand alone. Today her favorite thing to do is to push the baby carriage down the hall with minimal assistance. Two weeks ago she stared at toys and playthings. Today she loves to color, play play-doh and Little People toys. Two weeks ago her vocabulary and signing had reached a plateau. Today she can also sign "play" "open" and "done". Two weeks ago we felt blessed to get a little smile out of her. Today she belly laughs, smiles on command, blows kisses, shows off parts of her body and waves first thing when she notices someone laid their eyes on her.

We spent all day today in a rush. Dr. Bergsagel chose to go ahead with Pipers monthly chemo which just so happened to be a sedation/spinal chemo. So she was NPO until 11am but completed an hour and a half of different therapies before the procedure. She was also photographed for some physicians bulletin they are putting together about the therapy dogs the hospital uses. Then in the midst of the sedation she swallowed some fluids which affected her breathing and spent the next hour being watched as she was given breathing treatments. We then went to grab lunch down in the cafeteria, came back to the room, ate, fell asleep at 3 only to be awoken at 4 to go downstairs for a CT scan to ensure no fluid on the lungs. Completed that, came back to room, did two more rounds of therapy, fell asleep, got visited at the same time by all the Dr.s who check on her , woke up. She then was due for her monthly dose of IVIG which is a boost of antibodies for her little body that she has reacted to in the past and now gets benedryl, tylenol and a steroid for. She began the transfusion which ran for 4 hours, had blood taken to check her CBC and CMV levels and then was put through the apparent horrors of a bath. Smelling much improved she and I cuddled on the bed and she did her nightly routine of spreading lotion all over her legs and arms and usually, my ears or other body parts she finds funny. And she zonked out at 10 and I have big plans to squeeze a shower in before zonking myself.

All in all this visit has been superbly beneficial. I don't ever want to have to come back again but I am glad Chad and I made this decision, despite how exhausting and frustrating it is for everyone involved. I think I need these random hospital stays to be reminded of just how good I have it back home in that itty-bitty apartment.

Fickle little me

2011-04-09T22:52:00.003-04:00

Fickle little me.

I am happy. I am so enjoying the simplicity of life with Piper (and Linley) these days. She smiles. She laughs. She wants to get into everything. She is a joy to be around and I tell you with much love in this mothers heart that I need this. For so, so, so many months she has suffered and become a shell of a child. So many days she either screamed all day or simply sat on my hip and watched the world. So many times I felt emptied of emotion as I went about caring for this little girl who I so adored but was so utterly exhausted of.

Even so...

When sleep eludes you, life proceeds you, children exhaust you, spouses frusterate you, fears control you, I think it is normal to become overwhelmed but I have a hard time separatting overwhelmed with just plain bitter. Its too easy to cover oneself up with the warm blanket of woe.

When Piper (and Linley) are well and happy and the laundry is caught up and dinner is more than the dollar menu at McDs then I am contented. My soul smiles.

When Piper (and Linley) are not well and fears/lonliness abound and my feet trod and my mind blanks I am far from contented. I am questioning and I am not exuding any traits of faithfulness. My soul festers.

Oh fickle little me. Each day is only a day, not a lifetime. I dont want to be that person who bends when the hard winds pick up and find myself seeking a God that I usually find no time for, neither do I want to question Him with belligerent thoughts or actions, raging against injustices. I do. And I will. But I dont want to.

I want to learn to live in the moment, knowing that the biggest and best part of my existance is farther rather than nearer. That sometimes holding tight, smiling weakly, plodding through the muck and mire is simply the best way to do that...without a bitter, discontented heart every time I hear ill words or fear crosses my mind or my range of emotions control me.

I want to lean on that Rock. To trust such a magnificent God. On days when I have not the energy to care not whether I am upright and standing that I will calmly lay myself in the dust of the dreams that I once dared to have and smile, knowing that this moment shall pass. That I chose, just like I do daily with my husband, to stay and find out what God has in store for me, bitterness be damned.

If it is ugly...I want to still praise God.

If it is beautiful...I want to still know God.

Fickle little me.

4/7/2011

2011-04-07T21:54:00.005-04:00

A lot has happened since my handy dandy bullet point essay. Piper is thriving and doing wonderfully with the therapies. Each day she has between 3 and 4 hours of different therapies to work on different aspects of her development and it wears her out but she is rocking it. We met on Wednesday to talk more in depth with all her therapists about goals, discharge plans, etc and I was very happy to hear them sing her praises. Her specialist also have many good things to report.

Frankly, before her stay we get a lot of "wow, she sure has some lungs" and "she sure is pretty" which in essence to me that means my kid is really loud and thankfully, pretty. Both true but not always what you want people to notice standing in line at Target. The therapists however are impressed with her small motor skills and her communication skills which is basically signing plus a few choice words and well intentioned grunting and pointing. She is doing well with her new leg braces and is often pointing to the couch where she stands and looks out the window. Her hips are still frog legging instead of putting her in a postition to crawl but she is trying and she is able to get from a sitting position to a crawling one and vice versa and is improving daily on rolling over on her own. Mostly, she finally has the desire to play and explore and move, and she has had so little of that since November that it is pure joy to see her do what she is doing. The rest will come, I am confident.

Piper has had a skin prick test and a 48 hour patch test to check for soy and milk allergies, both which came back negative. She is doing well drinking her elecare and on Monday they chose to stop her TPN because she was getting enough calories from that...for some reason she lost half a pound yesterday so they will continue to watch her weight and if it happens often she will be back on TPN. Her "gut rest" is being modified as she attempts different food and tolerates them well. Piper is now allowed to eat fruits, veggies, chicken and potatos. And she is loving that! Her bowel movements while still loose, are still free from mucous and blood and are only 2 or 3 a day versus up to twenty. I even got wild and have begun putting her in one diaper at a time instead of the two that we have become accumstomed to. Nice.

When we were moved from the Aflac floor to the Rehab floor, Pipers CMV levels had dropped to 1800 and the infectious disease guys were content with that and chose to stop the antibiotic. Unfortunatley the blood work from Tuesday came back today and they have risen again to 10,000. She had her urine tested to ensure them she was not growing a resistence to the Cytovene and while they wait they went ahead and restarted it up again, once daily. The next step up as far as antivirals to treat the CMV has the potential to be signifigantly more harmful to her organs. Not so nice.

We will be going home on Wednesday the 13th.

If you are the praying sort please pray for this CMV. It is such a monster and I am so overwhelmed at how it is affecting so many things. Piper still is in treatment to battle the even bigger monster that is leukemia but unfortunatly the two monsters are not very compatible and are not helping the other out in the least bit.

"I want to be a supermodel veterinarian"

2011-04-04T22:28:00.004-04:00

...well, Linley does. She tells me this frequently and emphatically because I ask her frequently what her plans are for her life because I am not sure whether to encourage her supermodel aspirations or to attempt to tone them down a bit. Not because she isn't an incredibly beautiful little girl but because she already has a little of a diva temperament at times and well, she's short like her mom. And her dad. She gets it honestly but it probably will not parlay her into a future on the runway.

So we are chatting about other career options and apparently she now wants to be a vet. Now anyone who knows me, knows that I am simply not a pet person. Contrary to popular belief I do not go around kicking them when their owners are looking away but neither do I ever desire to run a zoo. Linley, on the other hands is now planning to supermodel at night and vet during the day. And I think I am okay with that. So okay with that that last week I spent the afternoon with her at the University of Georgia's Veterinarian School Annual Open House. (try to say that three times fast)

It was a lot of fun even if the goats smelled accordingly and the bull was keeping a very keen eye on me. I kept my distance but Linley was loving all the animals and exhibits and free things for the kids to do. I was simply loving being with her, supermodel or vet or not.

bullet-points for this girl who loves lists

2011-03-29T22:37:00.006-04:00

Okay, I am certain I am going to miss something in this update but I will give a good try.

Today was the planned Care Meeting. And can I say first that I never wish to have completed college until I am sitting in a meeting with a man with a medical degree who cannot be much older than myself. Seriously, if my daughters were not so amazing I would feel like I had been just sitting around and twiddling my thumbs for the last 7 years or so.

But I digress. The meeting went well. Thankfully, I have a good rapport with the oncology team as well as the multiple specialist working on Pipers case and I was able to maintain my pride and pepper them with questions. I am really good at questioning authority, you see. Ask my father.

I'm going to have to break this down into bullet-points only because I really like a good list.

- Chemo: this is being held. They want Pipers intake to be as simple as possible as they muddle through possible allergies and causes. Hopefully they will begin again before I lose my own hair from worrying about the effects of no chemo every night.

- Her CMV levels have dropped to 1300 (remember she was at 5.5 million when diagnosed with CMV back in January) and Dr. Shores is confident that until she completes her treatment of leukemia in September that this is about as good as it gets. She will not get any more Cytovene unless her weekly blood tests show her CMV levels rising again.

- The allergist is going to do a number of blood tests as well as allergy pricks to determine what she is allergic too. He was able to tell us that she is a 4 as opposed to a 1, which means that whatever she is allergic to, it is something she reacts to more like we react to poison ivy as opposed to the immediate reaction some have to peanuts. Testing begins tomorrow.

- Dr. Siripkin is pleased with the much decreased volume of diarrhea and the erradication of blood and mucous in them. He is keeping her on "gut rest" for 4-6 weeks. Oh. My. Lord. Thankfully she is drinking the vanilla Elecare and we have been able to distract her from food thus far. Piper will continue to have TPN as long as she is on gut rest in order for her to continue to receive the nutrients her little body needs so desperately. Unfortunately he does not want to use her port for the TPN because of the sugars and possibility of contaminating her port-line, resulting in some serious side effects. So tomorrow she will be de-accessed and a less permanent PICC line will be placed in her arm. Fun times indeed.

- The MRI that she had last week came back with good results. Her spinal cord is in perfect shape. The one thing that did show up was a loss of marrow in her left tibia. This is not uncommon with the amount of chemo and steriods her body has received and it is not something that is fixable but rather something that will require a little more work to get her moving...

- ...which brings me to the final bulletpoint in tonights presentation/update. Piper needs braces for her ankles. Because of the malnutrition, because of the CMV, because of the diarrhea, because of 18 months of chemo, because of the stubbornness inherited from her mother...pick your vice. Either way, she has been immobile since Christmas and as a result is beginning to develop "foot drop" in which her feet are not in the correct position to stand even if she did have the strength. So orthopedics is bringing her some fancy-shmancy braces for her ankles as well as additional support for her left tibia area.

Because we are making such headway with Pipers energy levels and nutrition needs we are now planning to spend the next 2 weeks in the Rehab area of CHOA. She will receive intensive physical therapy as well as occupational therapy for about 6 hours a day, 7 days a week. While I am certain we will both be exhausted and I am certain the other half of this Needham Crew will be missing us as much as we miss them, Chad and I feel strongly that we need this to begin getting Piper back on track. Providing it jumpstarts her progress, she will continue with less intensive but still multiple times weekly pt and ot on an outpatient basis after she is discharged.

I've said it before and I truly mean it. I love a good plan. And now we have one. Please pray for any and all of the above bulletpoints. I have to say that while you are all asking for big things from my Big God, I am going to be thanking Him for the new and improved little girl I have been hanging out with the last 48 hours. Who knew that Piper was actually a silly and sweet one year old under all that chemo/cmv/steroids/diarrhea?

Because she is!

We are good.

2011-03-28T22:40:00.002-04:00

I always love the hospital at night. This may be odd since the entire extent of my experience with hospitals revolves around cancer and Miss Piper, but it is true. Being an optimist about it all I would say it is because we truly love the nurses and staff here and I truly am able to rest while my daughter is being cared for these amazing friends/nurses/staff.

Sometimes when I am certain that Piper is sound asleep and secure I whisper to the nurse that I am going to go wandering and I head out towards the lobby where for the majority of the day there are parents, patients, visitors, medical staff and the lone delivery guy milling about. At night there is only myself and the night security staff...hopefully the handsome one with nice teeth who asks about Piper, not the one who whistles badly. I make the same rounds as I do when Piper and I go for our multiple daily jaunts and I mentally say the same things as if Piper were on my hip, " is that a fish?" "what does a choo choo say?" " did you just poop on my arm?" You know. Normal stuff. And then I wander back to my daughters room and settle myself in for the night. Eighteen months of being back and forth from here and our true home have made this place normal. If the nurse is a friend/nurse I will sleep soundly, not waking when she visits for vitals. I prefer to not have someone stay with me overnight because it is here in this little room with the gentle hum of Pipers sound spa and the thousands of pillows necessary for a good nights sleep that I decompress from the day. It is good. Obviously, I am an introvert...I love my alone time.

So tonight I am alone here in room 182. Like I said, it is good. I spent last night home with Linley who is amazingly bed-hoggish for being 40lbs but she sure does smell like innocence and simplicity and I will take that. After spending the day catching up at home and walking around with bare toes, I grabbed Linley from school and some ice cream and lovely together time before I headed back up this way. Chad now has Linley and prepares for a day of classes, work and Mr Mommying. I prepare for a day of wandering, playing and hopefully a Care Meeting with all of the doctors who play a part in Pipers treatment. We will soon have some options and a plan and I will be glad for that. Until then I will read, pray, be still and possibly wander off for a minute or two...because we are good.

March 26, 2011

2011-03-26T22:51:00.003-04:00

Piper had her MRI this morning and everything looks good. The docs didn't see anything of concern. The only thing that showed up was some scarring from the lumbar punctures she gets every month. No one has a real answer for why she is not using her little leg. The doctors think it is due to mal nutrition, but are not ruling out nerve damage which can be a side effect of one the chemo drugs she has had large doses of.

Piper's CMV levels did not drop enough to make her oncologists happy, but the infectious disease doctor is not as worried about them. The ID doc does not think that her CMV is what has been causing her to have such bad diarrhea. From what I can gather the CMV is or has played a part in her digestion problems, but the CMV levels are low enough that that alone would probably not cause her such aggravation. Her endoscopy last week did show she has colitis and the GI doc thought it may be caused by her CMV, but the biopsy showed signs of allergens. So we will be seeing an allergist during our stay this week and hopefully get some answers. Until then she is on "gut rest". Which means no food. She is getting nutrients and fluids through her line and can have a hypo allergenic formula that she seems to like ok. This sucks because we have been working for almost a year to get the kid to eat well and it has only been the last couple of months that she has been acting hungry and wanting to eat. The purpose of the gut rest is hopefully to heal her intestines and find out what she is allergic to if anything so she can start eating normal again.

Monday or Tuesday we should have what is called a care meeting with all the specialists involved in Piper's care. Until then oncology is holding off on her chemo for this week and the ID and GI have decided to hold off on her anti viral meds and continue the gut rest until everyone is on the same page. Right now they all seem to have different ideas about what is going on and what the next course of action will be. Maybe this will be the first step in getting some real answers.

We don't have a time frame for this stay. So we may be in for a while.
Later,
Chad

if you give a mouse a cookie

2011-03-25T23:39:00.002-04:00

i know i read a pretty good amount of childrens books but surely, you have read it as well. right? it begins with a mouse who needs a cookie, then once he gets his cookie he needs milk, then once he gets the milk he need something else and so on and so onn it goes until the tired narrator finds himself wishing he had never given the dang mouse a cookie in the first place.

does it say anything about my mental state that this little book has been on my tired little mind all day? and it has. and it is how i think i can best describe today...

if you get a piper to the clinic, you have to keep her from eating anything in order to be sedated. if you dont allow her to consume anything then she will become lethargic. if she becomes lethargic she will need to cancel said sedation and get a personal invite to stay here at the lovely hospital. and this is where mommy would probably cry except i havent the energy to do so. also this is where i am wondering where i misplaced my joy of the lord...that nice little slice of strength that ive forgotten about lately.

so now you know i view our life as a kids short story. its fun like that.

tomorrow piper will have the postphoned mri, the infectious disease dr is keeping a close eye on her cmv, the gi dr is toying with options for her poor gut and intestines, her oncologist is holding her chemo and piper is just hanging out...happily, she has no clue she is medical mystery and miracle and i am thrilled with that.

please pray for some answers and some progress. so many issues, none of them simple and none of us are entirely rested and ready for this stay.

now i plan to roll over and snuggle up with my sweet linley, who is seriously the only person i know who loves to be here. strange little fancy face that she is.