Life at Home

Madeleine does so amazing each time she's home. I'm so proud of all that she has accomplished! They warned us in the beginning that it was very likely that Madeleine would not be able to meet her milestones or do a lot of the things healthy kids her age would be doing - and look at her! Playing on her tummy, bringing her legs up preparing to crawl. Take THAT cancer! And I know I say it every time, but she really is in love with Sis. She squeals now at Annalise, and they have their own conversations. They are learning to play with each other's toys, something more difficult for Sis but she's getting better about not getting mad and sharing. Madeleine is also so much more sturdy sitting up on her own, although we have to be very careful about making sure she doesn't hit her head on our tile floors so we surround her with pillows when they play on the floor. She's also getting more acquainted with her jumper that totally freaked her out the first few times she was put in it to jump and sit herself upright.

Late afternoon nap after playing all day

At clinic 5/22

The last 10 days have been at home. We're so grateful for this time, even though we have days still completely swallowed up by Madeleine's medical care. In 10 days we've spent 3 of them back at the clinic getting labs drawn and check ups. Although some of Madeleine's counts are within normal range, some of the most important, her ANC, is still teetering around 500 (0.5) - she needs to be above 1,000 (or 1.0) in order to begin her 5th and FINAL cycle of chemo. She's been within the 0.4-0.6 range for almost 2 weeks. Dr. Davidson has told us that each conditioning chemo is harder on her body and even though she's getting her cells back, her bone marrow is completely beat up and having difficulty recovering. Dr was hoping to begin her final chemo today, Friday; but without counts, we're forced out into next week. 

At clinic 5/24

Yesterday Madeleine received a shot that helps boost her white blood cells with the hopes that by Sunday/Monday her count will be high enough to get admitted. Daddy is not very happy that, due to the holiday weekend the outpatient lab does not employ an RN that can draw blood from her central line, the lab phlebotomist will have to poke her to draw blood :( to check a white blood count that may still not be high enough. Also, because the timing is so critical with the cell transfusion, the only other time next week to begin is Thursday/Friday. So we'll see. It's been difficult to lay and wait on this day, that day, not knowing exactly when to be prepared to go back, especially with 2 small kids and all of us really preferring to be home. The general consensus is that Madeleine should be readmitted by next Friday, June 1. We also have to expect that her last transplant will take her the longest to recover, both inpatient and afterwards, but she will get a bigger bag of stem cells this last time to give her the best opportunity at a full recovery. 
Last week I read a beautifully written article published last year in the New Yorker by a man who's 9-month old daughter had also been diagnosed with the A.T.R.T. I felt like so much of what he was able to truly capture in words was our experience exactly; until I got to the last page of the article. Isabel didn't make it. I couldn't even read the words much less finish it. I slammed my laptop shut and grabbed up Madeleine so quickly holding her to my chest and praying over, kissing her head. I would say that lately my fears have been giving me anxiety, keeping me up at night, though I can't bring myself to write them. I'm afraid they would come true. Madeleine has walked a tightrope since January. June signifies the other platform. That's all I want to envision in my own head, her reaching that platform and waving with her glorious smile that brings joy to my heart and tears to my eyes. As our dear friend told me, she has the strength of soldiers.