"beautiful things"

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

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

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

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

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

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

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