Tuesday, March 20, 2012

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.


  1. Such a delicate dance between medication that helps yet harms......we will continue to pray for Gods protection to cover Piper while she is on these harmful meds. And as always we continue to pray for her complete healing......to again hold your hand.....skip along side her sister.....play at a park.....go to a zoo ......and just to cuddle with mom and dad. Every day I look at my daughter, I think of Piper..... So grateful for today! Praying today will bring more joyful news!

  2. Such an encouragement to see such a tiny little angel fighting to take her next breath and winning. Grateful for the medical communtiy, more grateful for her faith filled family and the unending outpouring of prayers. I praise Him for the small battles and continue praying for the war.

  3. I learned of your sweet family through a friend at work. Since then I've been following your blog and praying for Piper. Like so many , I look forward to your updates daily ... and can't wait to read the day when she is home and healthy and all this is a memory. You are such a strong woman and I look up to you. Your family is an inspiration to us all. Praying for all of you!

  4. Praying daily, Susanna. We know God has you surrounded by his grace right now. We just pray that Piper pulls out of this quickly so that all of you can move on to finish her treatment. You are amazingly strong and I know there are days you simply don't have a choice but to be that for your family. You guys are doing great and there are lots of prayers covering you from Atlanta.

    Praying, Praying, Praying...

    Jana Dufresne
    (Watson's mom)

  5. So happy that Sweet Piper is improving, little by little! I will continue praying, praying and praying some more for all of you and that Piper continues to improve each day.


  6. Praying for continued improvement and rejoicing in what God has done and will continue to do.

  7. We have been following closely and praying continually for your precious Piper and your family as you walk through each day. We know of your family through Alicia Larson who is my sister-in-law. Our daughter Abbey is a leukemia survivor and oh how my heart breaks as I see you walk this very difficult road. I have cried many tears as I've read your posts and prayed myself to sleep many nights for Piper as her little face is etched in my mind. You guys are doing an amazing job and I am so thankful that you have Him to carry you through this. It is encouraging to read these baby steps in the right direction and we are praying for a good day today and for her body to continue to fight this and get stronger. Please know that you are not walking this alone, but that you are being loved and prayed for by so many. With love from the Colberts, Shelley

  8. Continually keeping Piper and your family in our prayers. So thankful to read your blog today to see that Piper is improving. All of these petitions to our Lord are being answered, and I'm honored to be able to witness this with you. Keep your head up....you are one amazing woman!!!

  9. I will probably never have the honor of meeting you in person, but I want you to know that I am lifting you and your precious Piper up in prayer every day. I was introduced to your blog about a month ago, when a facebook friend of mine commented on one her friends’ posts about your story. I have been loving your family from a distance and pleading with God on your behalf ever since. Your fight for your daughter is absolutely awe-inspiring, to say the least. It has brought me to tears on numerous occasions. I can’t imagine God equipping Piper with a stronger or more faithful family to help her through this trial! What comfort there is in knowing that as much as you love Piper, Jesus loves the little children infinitely more and He is with her in every set-back and every victory. Although it is incredibly insignificant in comparison to your Piper’s health, your faith and trust in the Lord (which I would describe as nothing short of courageous) leaves me speechless. You are an amazing inspiration and I have been so blessed to witness faith like that; I am just so sorry that it is under the circumstances. I am praying fervently for the team of doctors and nurses who are treating Piper, for your continued and renewed strength, peace and hope, and especially for sweet Piper’s current battle and overall cure. GOD BLESS!! Much love, Kate Schluchter

  10. Praising the Lord with you guys and continuing to pray for more good days, many more good days. So thankful that our Lord God, the one who heals, has your daughter safely in His good, loving & marked hands. We are all in this with you Piper! And you too Linley - You are a great big sister!!

  11. your ability to write and share your emotions are only surpassed by your extraordinary strength in continuing to support piper through such challenges.as a parent i can only imagine the sensations of watching my child on a ventilator.you and piper are total heros . prayers are with you and your family and if there was any justice in this world...

  12. Praising God for this news! We are praying all day, everyday for healing for precios Piper.

    "For this child I prayed and the Lord has granted me my petition which I made unto Him"
    1Samuel 1:27

  13. Susanna & Chad,
    I know that you will be amazed to receive email from me. Can you believe that I actually got on a computer for you two? That's how much I love you and your children! I wish that I had wise words but all that I can say is how much my heart aches for you both and for Linley and the rest of your family. I have been thinking about you all so often and praying, asking God for his protection over you all. I know that He is there with you, walking with you through the darkness of right now. I am so thankful that Piper is off of the BP meds and I am thankful that she is a fighter. She has never been one to give-up or let things get her down. She has always found a way to enjoy life and I can't help but smile when I think about her walking up and down our halls in her super fancy little walker saying "come-on".
    I wish that I could be there in Memphis to take care of her - it doesn't feel right for her not to be with her hospital family when she's going through this. We (I'm speaking for all of her nurses of course) love Piper and you all very very much. Thank you for letting us be a part of your all's story. We have seen Piper grow up and it has been such a joy to know and love her. I have met many families over the years as an oncology nurse and they are all special but there are a couple of families that once you meet them, you know you will never be the same. I remember the day that I met you all and I knew then that you all were extraordinary people. I filled out a "primary card" for Piper that very night because I knew that she was going to be one of those children that I went into nursing to know. Thank you for the privilege of letting me take care of her and for also becoming my friends. I will continue to pray for Piper's healing and for all of your protection as you weather through this painful time. Sending lots of love and prayers your way!