Update 3/31/12

Today is the St. Baldricks fundraiser being held in Pipers honor in Athens. Because of Pipers code on Thursday night, Chad and Linley had to turn around and return to the hospital, much to Linleys dismay. Thankfully my father flew up to Memphis yesterday and kissed on Piper then took Linley back with him to Atlanta so she could participate in St. Baldricks. This is only one example of how blessed we continue to be with support.

Pipers night was quiet. They had to add her back on a small drip of dopamine because her blood pressures were dropped. And the oscillator came loose early this morning causing us all some fright but Piper still was able to hold her own while they bagged her and replaced the tubing. They adjusted her NG tube and attempted to adjust her foley catheter but she is simply too swollen. She remains fever free.

The CBC from 4:00am labs today showed that Pipers leukemia blasts are at 79%. Only 24 hours ago they were found to be 30%...her cancer is rampant. Everything is tied together and everything is painful to watch.

I want to hold my girl again. I miss hearing her little voice and I miss feeling her limbs wrapped around me. While I still plead for a miraculous healing, I also plead that God will show us mercy. Watching Piper in this state makes me anxious...I'm thankful today only for the simple truth that Gods grace is sufficient for the pains I have.

Tomorrow I will receive the grace needed to deal with whatever happens.

Today I will lean and sob.

Update 3/30/12

Last night sleep avoided us. Chad and I rested, allowing our bodies to drift off guiltily...waking quickly as our eyes search out Pipers form and the numbers on her monitor. Each time my eyes opened I remembered...details and parts of the past days and hours.

And as I have cried I have had to focus. Deeply and consistently for fear of falling apart in the face of disappointment. Deeper than ever.

Breathe in
Breathe out
Breathe in
Breathe out

Physically I now know that my right hand and fingers will go numb when my ears hear grievous things...I know to not lock my knees as I will fall over and perhaps never bring myself to get back up again. There is a chance that I will begin to hum the same songs that I sang to my Piper as she slept against my breast and then to move on to the silly ones guaranteed to have her smile and sing along with. My heart will feel as though it has stopped and perhaps it does stop from time to time. It certainly can not feel the full effect of my hurt.


I prayed to conceive this child for over two years. I rejoiced over her conception. I relished her twirls and thrusts on my womb and I eagerly delivered her to the world...I praised God only for her. Each day almost since her birth I have cursed the leukemia that insists on coursing through her small body. Bigger than that even I have loved her in spite of knowing that she would probably never get the chance to grow up. I did this because I love her and hoped for her.

Last night after many hours of medications and fevered brows, Piper was taken off the ventilator and placed on the ocillator. This is life support...this is a very loud machine breathing and working for my Piper. Without it she would not live...she needs it. I need her to have it as I cannot deal with other options at this moment.


Since being placed on the oscillator, Piper has been taken off the dopamine and the epinephrine. Her heart rate has stayed stable as has her blood pressure. They are weaning the nitric oxide and the oxygen pressures in an attempt to place her back on the ventilator. It's a lofty goal.

Today Pipers white blood count is 1000...unfortunately 30% of this is leukemia blast. Not only is she fighting to breathe but she is fighting mass amounts of leukemia which has infiltrated her now swollen liver and is throwing off her chemistries. In a healthy situation they would quickly give her chemo and get her to transplant. Because Piper is more sick that she ever has been she is not given that option at this time...her heart, lungs and liver are all compromised and would simply shut down.

We have small goals of healing organs and attempting transplant. We have the option of taking her off of the oscillator and allowing her to breathe independently until she no longer can. Or we have the option of healing organs and bringing Piper home. Of course, what happened last night can very easily happen again and if it were to, the chance of resuscitation is lower each time. I wish there were no options....options mean wrong choices and I am tired of fearing doing just that.

We continue to breathe in and breathe out and sob. Each moment I hold Pipers needle stuck hand I ache for healing and a future. She is currently alive only because of a machine and this is enough of a cause to sit back in disbelief. I miss my girl...I cannot believe we are here and I cannot formulate many prayers beyond pleading and begging.

Please sweet Jesus.

Update 3/29/12 (resuscitation)

Thirty long months ago I thought the worst thing in the world was being told Piper had leukemia. Then I adjusted. Seven months ago I thought the worst thing in the world was being told Piper had relapsed. Two months ago I thought it was being told she had relapsed yet again. Then I was certain it was having Piper transferred to the ICU. Then I was certain it was being told she was no longer stable but was unstable.

I was wrong each time.

The worst thing in my world so far is watching Piper stop breathing before my eyes. It was standing at the end of the bed and watching her oxygen rate drop from 92 to 8 in only seconds. It was seeing the panic on the doctors face and the rush of medical personal who filled the room and the request for a crash cart being heard over vital stats. It was hearing the respitory therapist say "we have a problem". It was seeing only a sliver of her little body and seeing it turn blue while they struggled to get her to breath. It was the knowledge that Piper was dying before my eyes and that this was exactly what Chad and I didn't want to happen...and it almost did.

When I first saw Pipers stats begin to plummet I watched...my arms were crossed and I began to feel numb. At some point I found myself sinking. Literally. Sinking into the ground as I wept silently and fiercely.


And all around me was chaos.


It took two hours for them to stabilize Piper and more medications than I could ever attempt to remember. She is back to being given the vec as a paralytic and she has a new pic line in place. Oxygen from the ventilator is back at full force and she is sedated completely. Her stats are stabilizing and she is being monitored more closely than I ever had wished to need. She is being given blood and platelets as well.

I miss her so.

I have had enough heartache in this day. While watching this all from the corner of the room I kept praying...I prayed for God to save my girl at the same moment I ached to see her pain lifted. I cannot fathom losing Piper and yet in the moment that I almost did I felt a peace throughout.

Remember please, that I know who holds her future...tonight, while it rocked me, was not a surprise. And if indeed Piper is not long for this earth I am consoled by the fact that she is going to be held closely by the one who made her. I will never stop praying for the miracle that I am certain God is capable of but I am choosing right now, in my fear and sadness to chose hope and peace as my solid rock.

All other ground is sinking sand.

Update 3/29/12

In my attempt to take each day as it is and to deal with it accordingly...I am currently holding myself together with lots of Starbucks driven caffeine.

And a little frantic praying.

Any good day with Piper means everything is easy peasy and I have a smile on my face...this truly is unfair to Linley and all others in my path. I can only explain that the fear that goes with having such a sick child will encompasses every aspect of your self. Nothing goes unscathed when your mind is on something as scary as what we continue to battle against. Our good days mean I am able to focus more on Linley and relax...physically and emotionally. As you can imagine this makes me a better mom than on the days I get so antsy being away from Piper while with Linley. And I miss being with Linley as much as I miss the way Piper feels in my arms.

It's not fair for anyone and I don't quite know how to better help anyone now.

Pulmonary hypertension has become our biggest problem by a landslide. Pipers lungs look wonderful and she is able to be awake some even while being ventilated. Her scratching is horrible and because of this they give benedryl which causes her to sleep a lot. We would love to find a happy medium where she could be awake and playing but so many things have to work together and so many things are not. When she is in pain or uncomfortable because of the ventilator they have to give the fentanyl because otherwise her oxygenation drops because her heart is working too hard. Then fentanyl causes discomfort because of the itching so they give benedryl which makes her sleep. Of course too much of the medication given for her pulmonary hypertension causes a drop in her blood pressures...

It makes me tired to think about it.

Piper has had an ultrasound for her belly distention, a EKG/Eco for her heart and the normal daily X-ray for her chest and tube placements. Her belly shows some extra fluid but not enough to explain the swelling she has. Her liver is a little swollen as well and we hope its only because her heart is working so hard not toxicity or leukemia. And we are still waiting for the results from the EKG/Eco to know what is going on with her heart...if it looks larger today we will probably have to have a heart catheter placed to monitor her closely. If it does not look worse today then she will continue to receive sildenafill (Viagra) and we should see an improvement in her oxygen stats soon as they have upped her dose this morning.

Im ready to get some good news. Piper still has no counts which means she cannot fight off infections well and we are constantly exposing her to new elements. It's also concerning because despite Piper needing to fight for her life now we are still fighting against leukemia and what her counts do when they recover will greatly help the doctors make a plan of action. Too many things that again, must work together in order for anything to work at all.

Chad and Linley left today for the weekend. We are having the St. Baldricks fundraiser on Saturday and I will be getting two bald loves back on Tuesday. I know Chad is concerned about me and Piper both so please pray for an uneventful time here or even better yet, pray that we see improvements each day so he can relax and enjoy the time with friends and family and his sweet firstborn.

I'm sitting next to my sweet Piper as she sleeps and I am drinking my green tea shaken lemonade and admiring my newly polished toes. If not for the steady stream of medical personal and the wheeze of Pipers ventilator, I would be able to lie to myself and pretend I were on my balcony back home.

I wish it were so but instead we will continue to battle and work through what is going on on the meantime.

Prayers are coveted. I've mentioned before being tired and weary and downtrodden but I hope and pray above all else that I never become despondent at this hand we are being dealt. If I do, I will greatly grieve my own soul as my hope does not come from my daily circumstances but from the Lord. Good or bad, each day will change but God and His infinite faithfulness never will. I'm thankful.

3/28/12

This will be pretty short because I am tired. Piper's oxygen saturation has been dropping througout the day which is a little surprising considering her lungs are looking good. The docs have attributed this to her pulmonary hyper tension which is causes her blood vessels in her lungs to constrict and cause her blood to not get enough oxygen. This is being treated with Viagra....no seriously. As they work her dose of viagra up they have had to give her more oxygen to keep her saturation up. This will delay her being removed from the vent by a few days, but they are still confident she will be off by next week. That is pretty much what is going on today and probably through tomorrow.

Good night.

Chad

Update 3/27/12

Not a whole lot of changes going on here. They have upped her Viagra and it seems to be helping her pulmonary hypertension a little bit. This mornings X-ray looks better both fluid wise and in that her heart has decreased a little. Her blood pressures are improving as well. Piper is still slowly being weaned from the ventilator settings and tomorrow they will be weaning the nitric oxide... This is the last step to go before taking the literal tube out of her throat and breathing alone. Her fevers are spacing out some; instead of every 8-10 hours apart, she last had one at 3:00 this afternoon, almost 15 hrs apart. They took her catheter out this afternoon after getting a urine sample to test for a Uti. She continues to be itchy but consolable and spends a lot of time playing with small toys in her lap or watching movies. Remember that she is still being given sedation medications and is still very groggy...even with this all going on, she has a pretty constant stream of nurses and doctors peeking in at her in amazement as she is reclining and playing. Piper is requesting water and we have been given the "okay" to put small amounts on her sponges used for oral care and to let her suck on them every so often. Doesn't thrill her but it's a little something. Piper still very much wants me to hold her and I don't know what's worse...when she cries when I tell her I can't or when she just turns away in resignation.


Neither should be an option.

It hurts me to see her like this and yet she is doing so much better than we thought she ever would last week.

So that's me whining.

The main issues will continue to be the weaning off of the ventilator and her heart condition. There is also the ridiculous balance of input and output and fluid gain that changes daily. Piper needs to have some counts come in and they have been very slow...please pray that when we do begin to see counts that they will be leukemia free.

This entire process is arduous and we are all wearily pressing on. We miss each other and nobody is actually getting good sleep...I constantly tell myself that this is just but a season but frankly, it's turning into a beautiful spring outside and we are missing it all.

As you can see I am whining and this is not allowable in our position. Piper is doing well and we are together (ish).


And God is still holding us upright.

Update 3/25/12

Piper isnt good at consistency...but really, isn't that why we love her so? Because she embodies resiliency and hardships and always within the same situation. Piper is never given the easy hand and she never lacks for struggles but this girl is stronger than we realize and each time she has a bad day it just makes the good ones more special.

And each time she falls down we just wait for her to pull herself back up again and keep us on our toes again...

She never fails us.

(not unlike the God we serve)

After a rough day where it seemed we were heading back down the same path we had just left, Piper is again improving. Her night nurse called her "amazing" and the doctor who is attending now said she is doing all
The "perfect things in the perfect times". All good things in here today.


That makes me not want to throw up and I spend a lot of my moments either crying, praying or wishing I could puke.

So that's nice.

In the last 24 hours she has rid herself of most of her fluids to the point where they are only giving lasix every 12 hours rather than an all day drip. Pipers vitals are all consistent and healthy, she is off of all blood pressure medications as well as the vec (paralytic), and her NG feeds have been raised to 15mls an hour as her TPN is being lessened. Her plethora of antibiotics have continued and will do so until her counts recover which is normal. Because they are attempting to wean the nitric oxide and the oxygen she's been given Viagra. Yes, you read that right. Apparently it helps with pulmonary hypertension which is part of the struggle she will be having in breathing independently and we are already seeing it work. Pipers oxygen and volumes have been lessened and she is taking most breathes on her own accord...the goal is having her off the ventilator by the end of the week. Piper is still receiving Versed for sedation but is being weaned which means she was able to stay awake today and even read a book with me and watched a movie with Linley. When she requested the iPad I knew we were on the right track and while she is very shaky and weak she is attempting to communicate and is giving high 5s and doing the hand motions to The Wheels on Bus. A care package with girl scout cookies were a big hit with both of my sweet girls.

And that does my heart so good.

The main issues we need prayer for are the fever she began tonight, the bedsore she has on her neck/head and the major itching she is having...we also need to see her counts recover. Once they do so she will have a bone marrow aspirate and the results will be able to tell us what and when the next step will be. Piper was not able to receive the full course of IL2 and her NK cells were cut short by the addition of the steroids last week...all efforts that literally saved her life but I still am fearful of what the leukemia will do.

Leukemia is a beast and the goal remains to rid Piper of it. For good.

As Piper has been moved from "unstable" to "stable"' to "thriving" I am all too aware of how gracious God has been. We do not deserve the goodness that another day with Piper brings but we praise God that He has given it.

A Couple of Events

Tomorrow evening (March 26) Hail Mary's Pub in Grayson will donate 10% of their profits to us directly. I believe it will be between 5-8pm. We have some great family and friends who are doing these fundraisers for us. St. Jude's is a charity hospital so all the medical costs are taken care of, but these funds are helping us get through these weeks without an income and we appreciate the effort and time that goes into supporting our family so well.

Another event is Thursday March 29 at the Moe's on Baxter St in Athens. This is the one right down from Jittery Joes. Moe's will be donating 20% of their profits to our St. Baldrick's event at the Blind Pig Tavern in Athens. This is the second area restaurant to do a percentage night for St. Baldrick's and an awesome show of support for funding research for pediatric cancer. If you plan on going you will need to print a flyer to present when you pay. This will ensure your funds go to our cause.

Lungs 3/23/12

Piper has taken a few steps back...and I would be lying if I said I wasn't scared. I know we are supposed to be taking it a day at a time but when the day gets scary it's hard to not get overwhelmed and fearful of the days to come.

This is where I am at right now.

I am scared and worried and almost frantic at times in my prayers...

As a mommy you want nothing more than to help and love your children and each time Piper struggles I want to pick her up and console her. But I can't. I haven't held my girl in over 10 days and holding her hand and rubbing her legs and kissing the small amounts of skin that I can get to between the ventilator she has on her face is not helping my ache to just pick her up. I want to feel her chest rise against mine and her fingers twirl into my hair. I want to smell her sweet breath on my neck and hear her hum herself to sleep.

Pipers input and output are ridiculous. She went from 13.8kilos at 11:00 last night to 14.5kilos this morning... All this extra fluid makes it hard for her to breathe and seeps into her lungs. While there are no signs of infection or sickness this mornings X-rays showed an increase in fluids everywhere...including her little lungs which otherwise look good.

All of her other organs continue to look strong. The bmt team came by and told me that there is no longer any sign of my NK cells though the initial infusion was one of the most successful that they have had. So we pray that the 7 days she had them roaming her body was suffice. Dr. Leung would like to get a bone marrow sample to see what is happening as her counts should be recovering soon. The goal is to get my girl strong as quickly as possibly and on to a transplant where she can get a lifelong dose of my Nk cells and beat this.

I was hoping to see Piper continue to improve. Having bad days makes everything hurt and my mind is constantly filled with worry and questions. I am attempting to focus..focus on how great my God is and that this will not alter Him. To focus on that which I know to be true which is really the only way I will ever be able to cope. I know nothing of the future but I trust that God is true and trustworthy and that is how I will calm my own rocky soul.

Waterdeep (psalms 131)

Oh Lord my heart is not lifted up
My eyes are not raised to high for Thee
I do not think on things to great or marvelous
Or matters too difficult for me

But I have calmed and quieted my soul
Like a weaned child is my soul within me
I have calmed and quieted my soul
Like a weaned child with its mother is my soul within me

O Israel trust in the Lord
From this time forth and forevermore
O Israel trust in the Lord
From this time forth and forevermore

Linley Coe

My Linley gets way too little attention these days. As a firstborn she was inundated with love and laughter and being the focus in most every setting...this began to diminish almost 3 years ago when we welcomed Piper Jean into our little family.

Things never went back to before.

And sometimes that's okay...you don't want your child to be an attention hog or reliant on others view of themselves.

Even so, it breaks my heart that she's had to learn to love her sister despite having little chance to grow up with her. That most every choice we make has to be contingent on Piper. And mostly I ache that she misses me and Chad... That others are helping me raise her when in reality I never wanted to do anything more than raise not only her but Piper and a quiver full of other little blonde hair, blue eyed babies.


Which is a big reason that Chad and I made the decision to move the entire family to Tennessee. Leaving Linley behind broke our heart as much as losing Piper did. So we moved and Linley continues to roll with the punches. She loves being part of the daily busyness that St. Jude offers and yesterday she showed her own support for her sisters medical institution of choice...Linley decorated a tshirt supporting the upcoming "sailing for Hope" benefit coming up later this year.

She had a great time and I am reminded again of her gift for details and her wonderful imagination that she will not always show off, in part to the new self conscience little lady she has been trying on for size.

She's amazing. If you don't know my girl, I am sorry for the slice of heaven you have missed out on.

I am blessed to be her mommy.

3/22/12

I am looking at a dry erase board in Piper's room that has a list of topics that my wife has left for me to blog about. I will attempt to put said list into paragraph form now.

A couple of positive notes, Piper's chest X-ray's continue to look clear. We know she has some secretions in her lungs, but the x-ray's are not showing signs of wide spread infection in her lungs as they did earlier this week. The infection(s?) in her lungs were on of her biggest obstacles for a while. If she wasn't able to breathe then we could not take her off of the vent. That seems to be turning a corner. Other good news is her blood pressure (BP) has gotten better throughout the day and is looking pretty normal this evening. Her blood cultures grew a strep bacteria, there are many kinds and this is not the same bug you get when you have strep throat, a few days ago and the docs switched her to that much stronger antibiotic she once had an allergic reaction to. She did not have a reaction this time and her subsequent cultures have come back negative which means the antibiotic is working!

OK, that's three of the six off my list on the board.

One of the challenges with this whole process in the ICU is managing PJ's intake and output. Because of all the fluid the kid has had on her lungs she needed a diuretic, but her BP needed more fluids because it has been very low at times. So, it has been a balancing act and she has been doing very well with that the past two days, but today she has started to look a little puffier and by this evening she is definitely looking a little swollen. The doc on tonight is not quite sure why, but he stopped her NG feeds (that's her formula through a tube) to see if maybe that added a little to much fluid today. We are basically watching her right now, but aren't exactly sure what is going on there.

Her poor little skin begun to peel, we think partially from that nasty rash she had, and is now into full shedding mode. It can look pretty rough, but other than itching a little doesn't seem to bother her to much. I think the good news from that is she will have some very soft new baby skin when she is done shedding her old skin.

Another "side effect" of being sedated and lying in a bed all day is developing sores on your body. We have noticed a sore on the back of her head this morning that seems to have been caused by laying on her NG tube. It looks like because she was so puffy from all the fluids that it indented into her head a little and has created a wound there. It is pretty ugly, but they have covered it with a breathable bandage and are trying not to lay her on anything so it can heal.

Other than these things we are just waiting to hear back about her heart echo that was done this morning. She has had some pulmonary hyper tension and they are checking her heart in relation to that I believe.

The rest of the Fam is juggling all this mess and taking it one day at a time. Linley continues to amaze us with her ability to adjust go with the flow. She did get to spend some time with Piper and watch a movie a few nights ago. She has been really sweet when she is in here with her by talking to her and holding her hand. I know they are missing each other too.ink

I think that is all the items on my list. Good night.

Chad

Midnight quotes

Midnight is a logical time to crave starburst and while spending time in a hospital is hell on a diet, there are vending machines at my beck and call.

So tonight I went on a mission that took me down the elevator and towards the cafeteria...it's a trek. It's Starburst for crying out loud, so I do what has to be done. And on my trek down three floors I was (stuck) in an elevator with two teenage girls and a lot of giggles and midriffs and one gem of a quote that I must share...

"Wesley makes me smile even if I am feeling fat plus he has the coolest shoes...I'm going to marry him someday"

I mentally gagged and counted the years that Linley and Piper would be allowed to roam a hospital unchaperoned and then added 10 years to that. Then I gagged again and pulled myself together and attempted to remember what qualities I desired on a husband when my own self were 14.

This was an interesting thing to do because I was "going out" with the boy who would someday become my husband when I was 14 years old. And while he did indeed make me laugh and he did indeed wear the oh so popular Vans, I would be much remiss if that was all he brought into our marriage 8 years later. Sure enough, when I was fat (ha) with both of his beautiful daughters he did indeed find me beautiful but his repertoire of admirable qualities has blossomed.

Today when our youngest was in need of a sponge bath while fighting for her life he rolled up his sleeves and tenderly helped me. Chad wiped the dead skin away from Pipers arms while being cautious of the many needles and bandages and lines coming from all over her sweet little body. Many men would not have been able to handle the gentleness of being an oncology father. When Linley was diagnosed with a growth hormone deficiency at 3, it was Chad who nightly gave our sweet firstborn a shot in her smooth skin and then soothed both her and mines tears with M&ms. He continues to encourage Linleys confidence even as she notices the difference in her size and other 7year olds. Not many men would be able to handle the emotional balance of a small but beautiful little girls self esteem.

And when I push Chad away as I break down with worry, fear, disappointment or frustration he generally waits for me to rage and come back. Sometimes he gets a deserving hug, sometimes I answer the phone when he calls and sometimes I remember to seek him out as a partner and appreciate the laughter he is able to heap upon these hard days we live.

Obviously I am a difficult woman to me married to...or so it's been said.

So here's to you Wesley. Here's hoping your shoes are as cool as Vans and that your laugher is positive and reaffirming. Should you marry this girl you have so wooed I pray you are able to look past her swollen feet and encourage her all the way to the births of your sweet children. And should your children ever need gentleness or a boost to their self esteem, I pray you have the guts to be the sort of partner that Chad has chosen to be today.

Update 3/21/12

Some days I store away thoughts and cannot wait to blog about them when the house gets quiet. Other days I wish you all had telepathy and could sense what was going on in my world or at the very least, that I could have an assistant who could update this mamba jamba each evening. Details can wear a girl plum out in this situation.

But we have neither hired help or telepathy so it's on my tired shoulders to happily share all that has transpired in the last two days. Obviously last night I crashed on my pleather roll out couch way too early to keep you up. No need to be jealous of my comfy set up because I have even better things going on than scratchy sheets and pancake pillows.

Piper continues to thrive. All bp medications remain off and her stats stay within normal range albeit a little low, they have begun and raised her NG feeds as she is tolerating them well, her gancyclovier dose has been halved as her CMV levels are dropping, her redness is mellowing out, her fluid output is normal and she has begun having bowel movements again, this mornings X-ray looks better than yesterdays and her respitory therapist is pleased with how her lungs sound and best of all was the emphatic "yes, she is more than stable" I heard from the attending doctor during rounds.

Despite all the wonderful things that are happening there are bumps we still are running into. Piper was accidentally given a much larger dose of lasix overnight resulting in a magnificent display of urine output and a loss of much of her puffy, swollen self. Two good things in theory but in reality this can cause a lot of pressure and harm to her kidneys...so far her levels look fine but they will be watching them closely. Pipers blood cultures also grew positive for the bacterial infection that set all of this ICU stay off...the doctors chose to begin Piper on Vancomyacin in an attempt to get rid of it and get rid of it well. Other medications are not as strong or effective as Vancomyacin which is why it is the primary antibiotic used when a fever or infection shows itself. Unfortunately, Piper reacted very strongly to in when given it back in September even after trying again a few hours later and at a slower rate. Even knowing this the doctors still felt strongly that they needed to at least attempt another try and explained that there was a good chance she would not react this time since she is post a bone marrow transplant and her allergies would most possibly be her donors not Pipers prior ones... As we saw when she was given IVIG post transplant. And so far, 5 doses in she is handling it normally.

The best news of all is the wean then total turn off of Pipers paralytic medication this morning. Within 45 minutes she was wiggling her toes and shaking her head when I asked if she was a sweet girl. They are continuing the doses of Ativan and Fentynal to keep her fairly sedated and in no pain but this is a good, good step. By this evening she has semi opened her eyes, scratched her right arm with her left and pointed with her left finger to the nurses stethoscope and nodding "yes" when asked if she wanted to be listened to. She is still so very tired and becomes agitated when respiratory has to suction her lungs and when she needs to cough or is uncomfortable but these are all very normal things to have going on. Just having her nod or shake her head to the music I ask if she wants to hear or to watch her point to her diaper when it is dirty is beautiful.

There are still many things that Piper needs to accomplish to move off the floor but every time she is given a new challenge she does it and with the beautiful grace of God, I pray she will continue to do so.

Update 3/19/12

Piper is being so very Piper. And when I say that those of you who know her and know how she rolls, well...you are rejoicing. Because Piper fights and struggles and thrives when people say she shouldn't be able to.

She is doing better.

A little at a time.

We were warned to take each day here one at a time. And you truly have to. When your day is difficult then you weep often and pray often... When your day is softer you will laugh a little more and remember to praise while praying. It's the only way to make it...an hour after an hour and day after day. There is nothing, I repeat nothing, easy about watching your child breathe on a ventilator. Nothing makes a mother cry harder than seeing tears fall out of your sedated child's eyes and without a doubt, holding your child's hands without them holding you back can reduce one to a puddle of emotions.

But today...today was good.

Today Piper is "stabilized". She is "cresting the hill, we believe". While we are not out of the woods by any means, she has sprinted through the thicket and on towards the sparcest tree line where she (and we) can begin to hope for healing. Yesterday morning she was having bp that would swing from 165/140 down to 55/35 in less than 60 seconds. As a result of this she was on the highest setting of dopamine possible and even a small dose of epinephrine. Her oxygen was constantly dropping due to large mucus plugs clogging her ventilator and her weight had ballooned to 14.6 kilos from 10.8 when she was transported from the BMT unit to here at the PICU. She was still on an decent level of oxygen and her volume was small, down in the 30s and 40s. And to top it all off she looked sunburned and and was still having fevers every 12 hrs or so.

Today she was beautiful. I believe a lot of it is credited to the doses of Hydrocortisone she began receiving and I have mixed feelings about that that I will address after I list the ways she has turned things around. Her bp stays constantly around 105/75 and her heart rate averages 100 bpm. Her oxygen is staying at 97% despite having the ventilator turned down to 38% and her volumes have increased within the perfect parameters. She has had no oxygen stat drops and no need to be "bagged" and helped to breathe above and beyond what they are requiring her to use of the ventilator. She is tolerating her respiratory pt and while she still sounds very "junky" in her lungs she is moving saliva out with the aide of the suction straw. This mornings X-ray looked a slight bit better than yesterdays and the days before. Both the dopamine and the epinephrine have been totally turned off and as her bp has remained stable for almost 24 hours she has been able to tolerate a lasix drip to begin to wean some of this fluid off her little body and thus, the pressure off her lungs. She's been stable enough to be rotated from back to left to right sides every two hours and her stats stayed normal throughout me giving her a bath and lotioning her limbs. We have begun small range of motion physical therapy and she is currently wearing her orthopedic boots to help the muscles on her feet stay in a normal position and not aggregate foot drop any more than we need to. There is still nothing growing on the cultures from her lungs.

The preliminary results from Pipers day 7 chimerism test showed 95% my cells,1% her cells and the rest were her first donors cells. This is good. Unfortunately, she is finished with the IL2 for good and the hydrocortisone is not friendly with NK cells...though less aggressive than other higher doses of stronger steroids. Piper will have another chimerism drawn on day 14 which will be on Wednesday and my prayer is that there continue to be mostly my cells fighting away despite this hurdle. As we wait for her counts to recover, the doctors have multiple plans for each situation... Whether she has blasts still or not. They were very clear that this is not the end of her treatment but that once she is strong again and ready to keep fighting, they will be ready to fight with Piper. The goal is still a stem cell transplant and a cure she deserves.

So our prayers are steady improvement with bp and the gradual weaning off the ventilator, that the NK cells continue attaching bad cells for a while and that her recovering blood work is leukemia free. You are all our support system. We are weary but encouraged when we read the notes you leave on here or Facebook. We soak up the texts and the voicemails and emails that come our way.

Thank you for that... For praying that Piper can indeed fight again leukemia despite this attack on her sweet body.

A Pretty Good Day.

My little sister, Laura, organized a fund raiser for us yesterday along with the Monroe Mason's. It was a huge success and turned out far better than we could have hoped. Although we couldn't be there, we are incredibly grateful to all that came out to support us and enjoy some chicken stew. We want to say thank you to everyone that helped out and donated resources and time to this event. Many of you we have never met and some of you we haven't seen in ages, but you all worked together to support us and that means a lot to us. Thank you.

Now on to PJ. We have had a very good day. Her blood pressure has been her most critical problem the past few days and today, with the help of medication, she seems to be holding her own. She is being weened from dopamine because it has a tendency to constrict blood vessels and aggravate her pulmonary hypertension. She has started epiniphrine, which essentially does the same thing, but at a lower dose and has a lesser effect on the blood vessels. So, today we have seen her dopamine cut in half and the amount of oxygen needed from the ventilator come down about 10%.

Because her BP has been so unstable and will drop dangerously low suddenly, the ICU docs have decided to give her a few doses of hydrocortisone. This is a steroid and as many of you know steroids kill white blood cells. Steroids also kill natural killer cells. Everything we are doing right now has a positive and a negative effect to it and since our goal is to have Piper around to fight leukemia we have to take this chance with the steroids. Our hope is she will get few doses and they will have a minimal effect on the natural killer cells that are in her body to fight that leukemia we can't seem to get rid of.

She is still not labeled as stable here in the ICU, but has improved since yesterday. Her oxygen saturation is staying in the high 90's and her BP, while high from the medications, is not taking as drastic swings as it did yesterday.

We know this is all an answer to prayer and we know that our God is the one that will heal this child. Medicine has it's limits and sometimes those limits are reached sooner than we would like them to be. Piper isn't there yet, but she isn't out of the woods either and prayer and the belief that God can heal her is better than any meds she will get.

Again, thank you to all those that showed your support for us this weekend and thank you to all those that continue to pray for this sweet childs complete healing.

Chad

Highlight of my day.

Piper fought off the paralytic medication a little earlier. Nurse Karen was fixing Pipers ART line in her left wrist and told me that Piper was jerking a little... When she was retaping her back up, Piper wrapped her fingers around Karens hand and held on. I quickly called Chad and I grabbed the other hand and we all spent about 5 or 6 minutes talking with a semi responsive Piper...it was beautiful. She nodded when we asked if she knew we loved her and was trying to form words around the tube as we sang to her...she agreed to listening to Annie tomorrow as well as watching Barbie with Linley. Her eyes fluttered against the cream they use to keep them moist and we were able to see glinpses of the sweet blue shes been forced to hid. When we told her she needed to take another nap, she shook her head. The entire time we were next to her we were able to feel her fingers grasp our own and we were able to see her body attempt to participate...the girl still has her vim and vinegar.

I'm thrilled to have had this with Piper. The decision to sedate and vent Piper was made so quickly I didn't have a chance to tell her what was going on and I could never have had enough time to feel her respond to my touch. Having this episode, while never the normal and surely not the most safe thing, made me cry anew. We were able to explain that she was getting sleepy medicine, that mommy and daddy were always next to her and that we all missed her dearly. And she was able to show us that she heard our love and that we are still her comfort.

As it should be.

Nothing made my day any better. And despite the continual bad news we receive this moment was given to us. I continue to pray for more moments...for a life together and more chances to squeeze hands and verbalize the fact that we all love each other so very much.

Her paralytic medication has been bumped up, we can't have Piper fighting off the ventilator. But while they can keep her from telling me she loves me no one will be able to keep me from telling her I love her...or take those beautiful moments away.

I praise God for this and I praise God for the one nurse we have had in 5 days here in the ICU who was able to simply say "this is good for you all" and walked put of the room and allowed us this time. Thank you Lord and Karen.

Update 3/17/12

Today is St. Patricks day... A fun holiday that once again, like so many others in the last 2 years, gets forgotten about until the day of. When mommy forgets about holidays there are no color appropriate shirts to wear or sneaky leprechauns or elves to leave footprints for my girls. Dinner will not be special and there will be no creative crafts and pictures to document the days festivities.

I get so weary of not only being limited in what we can do for Piper but also for what cancer steals from the entire family...especially the siblings who are drug along this horrible rocky path. It stinks and that doesn't even touch how much. I miss a normal life and even so, I scarcely remember living a life without worry hanging over our heads. I just miss being a mom and I miss my girls...so much. Oh so much.

Piper continues to keep everyone here on their toes. Nothing is staying stable for long. Her bp fluctuates, her heart rate often drop requiring the medical staff to bag her and provide her oxygen that way. They are talking about pulmonary hypertension and her CMV levels in her bloodwork have jumped to 6000, leading them to think that that may be the cause of the infection within her lungs. Whatever the infection within her lungs is, it is spreading and making it more and more hard to breathe. I don't even know what to worry about the most because I am so overwhelmed with just how sick Piper is... Having her ventilated only means she looks so sick and that I am missing out on her hearing her sweet voice and granting her bossy little requests.

I was told yesterday that Pipers chimerism of her DNA was showing primarily my cells. In normal circumstances this would be a source of excitement...at this point even the bmt doctors can't rally up enthusiasm because of how much Piper will have to overcome to even attempt a transplant. We are the lowest we have ever been and this is obvious. Every visit with her team and the ICU doctors leaves me feeling more defeated and they have moved her from "stable" to " unstable".

Rarely since Pipers young diagnosis have I asked "why", knowing that I will
never know the answer this side of eternity. Instead of wondering why this much pain has been heaped upon us, I focused on just being. Being contented with sharing a bed with the whole family and any times spent together. Being contented with taking each day at a time and appreciating each little moment I was able to give to Piper and even more, each little moment that she gave me. Contentment was the only way to survive and now I have such a sick little girl that I ache to make well.

I'm sobbing "why" with every breathe I struggle to take. I have no reserve apart from clinging to God in a way only the desperate do. My soul cannot fathom choosing to turn on Him as He is the reason I have survived this far. Praying is constant...it's my every breath and it's soothing. I know full well that God is capable of healing Pipers weary and sick little body but I also recognize that there is suffering on this earth and His will can just as easily be done when it hurts as when it feels good. I ache to never know this.


"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.”
― C.S. Lewis

Update 3/15/12

The human body is such an amazingly well oiled machine. The balance that sustains life is beautiful in its intricacy, I am seeing this. I have a new appreciation for the details that go into our very ability to breathe, thrive and grow, despite the beatings that our physical self may sustain and an even greater praise for the One who creates something so close to perfection.

Especially if this body is a two year old who has been receiving daily and weekly and monthly abuse in an attempt to keep alive and alive so well.

Especially if you are Piper.

She is beautiful... Already a miracle because she has thrived when many said she would never make it to her first birthday. When leukemia has invaded her 25 lb body not once, not twice but three times. When despite having lungs much more sick than she ever let on, she smiled and played and requested our hands in hers while soothing herself to sleep.

Today has brought a good weaning of the oxygen and pressures both which in turn showed her to be stable enough to have the pulmonary doctors get a sample of the fluids found in her lungs. They have found her to be very sensitive to the dopamine which helps control her BP so they are constantly required to manipulate the dosing as her pressure will dip quickly and then rise. Pipers daily lung and chest X-ray showed about the same amount of fluid on her lungs which is actually good (ish) since she had been steadily accumulating. Her Tylenol has been changed from every 4 hours to as needed in an effort to see what the trend is...so far she has done well since her 6:30 pm dose. This evening has been busy with changing oxygen levels and blood pressures as Piper adapts to each new addition of fluids her body requires...again, this intricate dance to maintain her sweet life. Each nurse, doctor and medical staff that walks into her room is attached although any of you previous medical care personnel know this to be impossible to fight...my girl is magnetic.

At this point, most absolutely the most heart wrenching of any season I have been blessed to have with my girl, we are stuck in the crossroads of worry and hope. Will Piper once again amaze the doctors with her resiliency or will the body that holds the sweetest two year old I know simple cease to work together? There is no way of knowing and this land of limbo causes a restlessness that I hate vehemently. In each other instance of bad news and Piper, we have always been able to look over at her little self and be encouraged that she was there... There and strong and smiling and keeping us pushing for her cure. This time she is sick; she cannot request a backscratch or me singing "you are my sunshine" or taking a walk while holding her daddies hands or leaning into Linley while watching yet another Barbie movie.

What she can do is get her heart rate up when I stroke her arm or shoot her blood pressure up when they move her too much and she clearly would prefer to be left alone. And while she smells of saline and betadine and medication, she still feels like my Piper when I kiss her nose or nuzzle her ear.

She is here still and I praise only God for this act of mercy He has handed us.

But oh, I miss her so much. I cling to the promise of God that He never leaves me or forsakes me and most absolutely He is even more close to Piper as she rests and hopefully gains the strength necessary to fight the next battle. And its only after His timeless commitment to me and mine that I hear and cling to the doctors who are encouraged with Pipers progress today.

Update 3/14/12

Long story short.

Pipers lungs are very sick. After being on the heavy duty nasal cannula for less than 24 hours, most of those being a very sleepless and fitful night of fighting to breath, the decision was made to intubate her. While this was a horrible thing to hear when waking up first thing this morning, it paled in comparison to seeing Pipers oxygen drop when she pulled the nasal cannula out and she struggled to breathe while turning purple. Nothing can compare and yet, 30 minutes later when Pipers nasal cannula was removed and the tube placed down her throat my very being sobbed as she struggled to breathe. It took a team of 2 doctors, 2 nurses, a nurse practitioner and 2 respiratory therapist to work together for 20 minutes to bring her back to normal...albeit with total dependence on the ventilator. They put a catheter in to allow them to accurately watch her fluid intake and outtake as her blood pressure fluctuates often. There was also an arterial line placed in her wrist to get better readings for the blood gases and a continual blood pressure. TPN continues, an NG tube was placed to for medications, she is receiving fentanyl and versed to ease the pain and keep her sedated and vec as a paralytic.

Since Piper was placed on the ventilator this morning she has been weaned from 100% oxygen to 55% and her pressures have stabilized as well. Small steps but at least they are going in the right direction. Her BMT doctors seem to feel that there is an infection somewhere on her lungs but she is not yet strong enough to pause the vent and send a syringe down for a sample. Instead they are putting her on a fungal medication and a viral medication in addition to the many other types used proactively already. The hope is to have her more stabilized by tomorrow and they can attempt a culture and have some definitive results for a precise medication to treat it. Her IL2 shot was put off today and they said they will take each day and see if and when she is able to continue.

While leukemia is a very real fear, at this point this situation is more frightening. The doctors were very clear that this is a life threatening issue but feel that if we can get a hold on what we are dealing with, they are optimistic that she will pull through. I pray so.

I still cannot believe that we are here. I already miss her little smiles and the none stop request to have her back scratched. Seeing her lying so still and helpless moves me to tears and yet, I have loved holding her sweet hand and seeing her heart rate lift at the sound of my whispers. That she declined so quickly and so seriously shows us the gravity of the situation and fully stressed the fact that her body is weak and is struggling to survive.

Please pray for Piper, I cannot stress how serious this is.

ICU

Shockingly, after 36 months of chemotherapy, radiation, a transplant and all the jazz that goes with a leukemia diagnosis, my Piper has never needed an ICU visit.

But today she did. Her oxygen, while it had been holding its own with the assistance of the nasal cannula and some good old oxygen air flow, today began to peter out. She stated pretty quickly and turned purple as Chad called for the nurse. I was home with Linley doing schoolwork when Chad texted me to come over. By the time Linley and I had made it across the parking lot and towards Pipers room she had already been moved to the ICU.

Since she's been here shes been moved to pressurized oxygen, which forces air into her fluidy lungs and keeps her from having to work so hard to breathe. This is working and her blood pressure and heart rate have begun to be a little closer to normal. They are giving her lots of lasix to help her to urinate and keep the fluid off of her...she has perked up a bit and did some movie watching and coloring with Linley which helped Chad and I's tears a little bit.

At this point they feel like she is stable and if she continues to improve they will be able to send her back to the regular Bmt unit for normal monitoring. The cultures from the last few days continue to be positive for this bacteria but once they had a name for it, they were able to change her to the antibiotic most beneficial to fight it off. We shall see. Our biggest prayers are that she can kick the infection, that she can rid her body and lungs of the fluids and the need to be here and that this problem will not keep her from receiving the IL2 shot tomorrow...unfortunately the line is thin as they decide how much her body can handle and how they can continue to fight the angry beast that is leukemia.

So now wait. You'd think I'd be good at this by now, but I am not. What I really am is at peace...scared to pieces but confident that God is handling it. He's surrounded us with amazing doctors and nurses and family that come running at a moments notice as well as an old childhood friend who doesn't mind visiting and supporting us.

We are in capable and loving hands.

Update 3/11/12

Piper was discharged on Thursday night. Friday and Saturday were spent in the clinic all day... And by all day I mean ALL DAY. Eight hours one day and then 11 the next, all for things that truly should have only equaled a 4 hour visit max. Each day outpatient requires Chad and I to balance the 8 oral medications she takes multiple times daily plus the two types of thrice daily Iv antibiotics and the constant TPN being given. Being on constant fever watch and attempting to keep Linley up to date with schoolwork is slowly wearing us down. Yesterday in the clinic she began running a fever but the attending doctor chose to allow us to go home after taking vitals and giving her a dose of Tylenol because everything else was fine.

So we walked across the parking lot to what we call home and she began to smile and do a little laughing and by the time she zonked out at 1:00am she was fever free. I got up to check her at 4am and she was running about a 99 degree fever but when I woke at 6:00am with Chad to hooked her up to her IV antibiotics she had jumped to 103.1. Obviously we called the doctor as we were packing up and Chad took her back inpatient where we currently are.

She continues to have fevers which respond to Tylenol just fine but also bring a heart rate of 160 or so with it. Her blood pressure is elevated but its her oxygen that we are really seeing struggle. She will drop to the 70s and they finally had to resort to the nasal cannula which has helped some but only when she is using a large amount of oxygen. A chest X-ray this morning showed some fluid on her left lung and as she has continued to struggle throughout the day, the doctors are putting in orders now to have a second X-ray given to see if things have worsened or not. She has had lasix as well as having multiple blood cultures done and stool and urine samples sent out.

Piper slept the entire morning and when she woke up she has been less than happy but not in pain. She will watch movies on my iPad and snacked a little on mac and cheese but something is definitely off. At this point they are keeping a very close eye on her.

My response to all of this; the leukemia, the scary vitals, the lack of sleep and mental olympics we are required to constantly take part in has been tears.

All day today.

I cannot stop crying and everytime a well intentioned nurse asks me if I am okay, it's all I can do to not lose it.

I'm really not okay but crying is all I can do about any of it so that's what I have done today. That and praying to once again have those sweet days with two girls and the ability to go outside and the desire to walk around and the hope that someday all of these horrifically tiring days will be in the past as I am able to enjoy these girls the way I desired to when I first planned for a family.

So much of this is just plain unfair and unexplainable and that does nothing to the immense amount of exhaustion and worry that rattles me on a normal day much less the string of days we have been having lately. And while we are constantly being supported, this lays on Chad and I...we both want and need to be the ones to care for both girls and struggle to stretch ourselves in ways we never hoped to have to stretch.

Flashback: the zoo for two

In the midst of cancer, chemo, minuscule amounts of sleep and foraging for decent meals is the fabulous simplicity of raising Linley.

Never do I so fervently praise God as I do when I think of her good health. True, she has her own issues (I'll share more about that another day) but she seems to have the healthy immune system of her mommy as well as the easy going nature of... Well, we don't know who. Someone far back in the genetic tree perhaps. Either way, she healthily and happily rolls with the punches. And this just makes being with her an even bigger joy than the already vast joy one I have as her mother.

On one of my "home with Linley" shifts last week, she and I visited the Memphis Zoo. It was a beautiful day and we both thourally enjoyed all the sights and a few smells, like her ice cream cone and that flower she loved to pose so prettily with. Because Linley was studying panda bears last week we made a point of checking them out and were blessed to see two very happy little ones running around and making us smile. At the risk of ticking off Ga residents, I believe that the Memphis Zoo exceeds the Atlanta Zoo due to the fact that they have much more animals and a very natural setting with minimal crowds. We will definitely be going back often and as usual I will be enjoying being with this seven year old of mine much more than the scent of the giraffe exhibit.

Tomorrow.

Both my girls are currently obsessed with the movie Annie. Linley received it for her birthday and she has quickly leaned all the songs and even breaks out some sweet orphaned little girl moves...and Piper just wants to be like her sister so she also is digging Annie.

And all day I have seen Linley belt out lyrics and tonight I was singing Tomorrow to Piper as I scratched her back and wooed her into a nights sleep and I realized I didn't truly know the words. Thankfully my two year old didn't care though I am certain Linley would notice right off the bat.

Now that Piper is snoozing I am searching the lyrics and loving them.

"the sun will come out tomorrow
Betcha bottom dollar that tomorrow
There will be sun

Just thinking bout tomorrow
Clears away the cobwebs & sorrows
Till there's none

When I am stuck in a day
That's gray and lonely
I just stick out my chin and grin
And say...

The sun will come out tomorrow
So you got to hang on till tomorrow
Come what may!
Tomorrow! Tomorrow!
I love you...tomorrow
You're only a day away."

Now, lest anyone think I am remotely as cute as Annie or either of my daughters while singing this, please know that only Piper encourages my singing and Linley has begun to look mortified when I do more than hum.

Thankfully for me, my maternal grandmother taught my own mother that "if you can't sing well...sing loud"

So we all do. And often.

And if these are the currently cool words to sing in my home I will hope that the girls both take them to heart and find the joy and optimism in looking ahead a little bit. In this ghastly world of cancer, so often we are told to focus on today... And while I think that is a necessary mindset to have to survive when the battle drones on, I also think that we as humans need to know that something is always around the corner... And we need to hope its good and worth waiting for.

Maybe that's just me.

Though I really doubt I am alone.

Now our personal Tomorrow will hopefully consist of discharging this joint. Granted we are really only moving across the parking lot but we will have locks on the doors and the ability to walk around without socks should we so desire. With this freedom comes a long list of medications and tpn and heightened responsibility that we are quite ready to work out.


The Natural Killer Cell infusion happened today around 5:15 and it was as anticlimactic as we anticipated. The actual syringe was only 10 ml in volume but was packed with several million of my natural killer cells...hopefully they are as pissed off at leukemia as I am. There was a room full if medical staff watching her vitals and a wall full of emergency response medication should something arise. Thankfully, the infusion went without problem though her heart rate and blood pressure today has been elevated and her oxygen has needed help... Not that she cares as she is acting just fine and happy. They continue to watch her closely.

Thus, we have Tomorrow. Im looking forward to it because sometimes living life a day at a time makes me feel stagnant and heaven only knows that looking backwards is the quickest way to emotionally run amuck...

So, tomorrow we keep our eyes on you.

And we sing. Loudly and badly.

I like to move it, move it.

I'm not so good at being still. My body and mind and all that jazz has a hard time focusing on one thing at a time. When I watch a movie, I also read a book. When I am on the computer, I am also prepping dinner. When I am sitting in bed reading a magazine, I am also painting my toes...the list goes on but suffice it to say I have a hard time settling down and relaxing.

Even when I am hooked up to a machine and told to relax for oh, say 6 hours straight. Pure awesomeness.

Obviously you can see how rejuvenated I was feeling in the midst of the natural killer cell donation this afternoon. I'm amazed that I felt so thoroughly exhausted after doing not a darn thing. Somehow though I did.


It may have been the fact that my brain was melting from boredom. I could only use one hand and even that one had an IV in it. A movie couldn't happen because I couldn't possibly also whip up a new pair of earrings at the same time like I am apt to do. And pointing and clinking on the IPad was not unlike how clumsily Piper works it while the book I had planned to read kept landing on my nose with no available hands to save my pretty face. All that being said, the actual donation was painless apart from the needle sticks and the nurses who worked with me were great, especially since they had to restick me again after about an hour due to my apparently wonky veins clotting up. And afterwards I was very tired and very hungry and very eager to use the restroom, all things easily handled and the rest of the afternoon and night was back to normal.

Tomorrow Piper will receive these NK cells. On Thursday she will have her second shot of interleukin 2 and hopefully she will be discharged and be a free girl for a few weeks. I can hardly remember having the whole family under one roof and semi -normal...whether its here in TN or in Timbuktu...I'll take it, dang it.

Piper is doing wonderful. Her rash is improving every day and while no one knows what the heck caused it, they are just happy to see it go. She is peeling so a large portion of our days are spent scratching her back and slathering her up with lotions. Piper completed this round of chemo just yesterday and we bid it a very happy adieu...hopefully she will have more prior to the stem cell transplant next month but for now we can deal with the counts bottoming from last weeks chemo but have a little break from toxic junk in her veins and all. Nice eh?

The only snag in this week has been the fact that Piper received her 4th CVL. Ugh. She somehow broke her single lumen CVL on Sunday. They were unable to repair it so the surgeon pulled the line at her bedside in her room. They used her trusty port for the nights TPN and early Monday morning she was taken to surgery. There they removed the port and placed a double lumen CVL, in anticipation of her needing it for the stem cell transplant.

(see how amazingly hot mommy could look every day if she were to become a surgeon or nurse in all her free time?)

So this is the best update I have. Piper is doing wonderful and this family is adjusting as well as we can. Our days are busy and our nights are a little lonely. We are in a good place and we feel very at peace and contented with life, despite how much the details hurt or confuse us. Each day is a blessing...each day with two daughters is a miracle and we eagerly accept this and wait and pray for the days to roll onto years and a miracle to happen.


It could.

I pray it does.

If you have itchy hands...

And want to support us then this is for you...

We have had an overflow of support for both Piper and our entire family. This support has kept us moving and I am certain, with Gods sweet grace, it will never end.

Because we are constantly asked what people can do to help I have listed two ways you can help out, apart from how amazing you all already are. Please know we love your fervent prayers the most.

Our family supports www.stbaldricks.org. St. Baldricks is a national organization who raises money and support for pediatric cancers alone. They raise money by holding head shaving fundraising events and this month my brother in law Nick, is heading up an event in Athens, Ga under the team name Perfectly Piper. He has worked tirelessly on this and we appreciate it but never more than the kids who gain research and cures and such from the money we raise by shaving heads. And yes! My Linley is bravely shaving her head as well so go ahead and donate some money to Chad and Linleys link below:

http://www.stbaldricks.org/participants/mypage/510874/2012

Also...

There will be a Chicken Stew fundraiser for our family in Monroe GA on the 17th of March. 6$ a quart so if you want to purchase tickets or have questions please contact Laura Needham 770.845.0503


As I said before, we are blessed by every little prayer, note and gift card that is sent our way. Thank you for making this crazy season a little easier.

And as for that address I know so many are waiting for, I hope to have one soon. We continue to be in limbo and are hoping to be moved from the Grizzlies House to a more long term apartment this week or next...

Chemo tomorrow

This will have to be short as I am exhausted and the ever so comfy sofa bed is calling my name.

Pipers bone marrow aspirate from last week was inconclusive due to a lack of white cells due to the prior weeks chemo... Keep in mind no one was expecting to not find leukemia but because this is experimental stuff here, there are many T's to cross and I's to dot... On Monday she had a repeat aspirate done and while that sample was also difficult to read due to clotting seen in the machine, they were able to manually look at the sample and see "a large amount of disease"... Which is what is necessary to begin and so yesterday afternoon I signed many consents as both Pipers donor and as her mother.

In following the eligibility of this study she would have been able to begin today but they are still awaiting results from the battery of infectious diseases she must be screened for...nothing to my knowledge as a specific concern. Because there are so many things to screen for, there are so many vials
of blood necessary...and this has to be done over a few days in order to not deplete her body of too much hemoglobin at a time. As it is she has been getting blood products every few days. Thankfully this is not uncommon and surely doesn't phase me.

Tomorrow we should be good to go. Five days of three different types of chemo; cyclophosphamide, clofarabine and etopisode... All pretty intense so the week post chemo should be rough. And I will be doing my NK cell donation on Tuesday for her infusion on Wednesday. Post this NK transfusion, Piper will receive a shot of a medication called interleukin 2 ( used to stimulate the nk cells to seek and destroy cancer cells it comes in contact with) every other day until there are no traces of my NK cells to be found, up to two weeks or so. I'm more than scared...while I know this treatment is intended for children with a lot of disease like Piper and that she is an ideal candidate, this whole process is new and foreign and more than anything we are literally at the end of treatment options for her.

If this doesn't cure my girl, there are no other rabbit trails to follow.

This very fact has made my whole soul hurt lately... The unfairness of it all can slam me in the face and yet there are no moments for wallowing in it all.

It must work.

Meanwhile Piper continues to perk up. After a few rough and quiet and moody days she has begun to show this facility what most of us already know...that my Piper is amazing. She is quickly becoming a favorite here on the floor and is wooing most doctors and nurses and therapist who come in contact with her. She has eaten like crazy today and I hope she will continue to have a few good days before the chemo catches up to her. The rash still is bad looking but it is clearing up on her face and she has begun to peel. If indeed, it is GVHD we will see an improvement when chemo begins to attack those pesky cells. If not I have no clue... They are still pretty baffled about it all.

I hope I make sense when I ramble on. My heart hurts today... It marks one month that fellow infant leukemia friend Paxton has been gone from her mommy and daddy. And I also heard from a fellow cancer family back on Ga whose daughter recently relapsed. I grow so very weary of this fight sometimes. Of crying with other mothers and worrying with other families. Of smiling at children who you know have little chance and of making myself chose Hope each day despite the massive odds that are stacked against not only my own child but most of the children we see here each day.

My soul is firm but my flesh is weary.

Come quickly Lord, come quickly.