Well, I think the best I can say is that we are hanging in there. I've had bad days and not so bad days since our news about no longer having a donor to save Will's life. I've had good moments within those bad days and did have a wonderful time celebrating Will's first birthday (his party was this past Saturday).
But overall? I've been very anxious. Very depressed. Very confused. Very sad.
We do have a lead with an International donor and should know more about that on Monday. We are hoping and praying that this is THE match for will. That someone that will actually follow through with their commitment and be Will's donor.
I've been extremely busy over the past week. Will has officially started his pre-transplant testing which has kept us at Texas Children's two days a week. I am so thankful that one of Kate's former nurses, Holly, has been able to watch her while I take Will to all of his tests. Kate adores Holly (or misser Holly as she calls her - apparently everyone is Mr. these days) and I know she is in good hands while I tend to Will's medical needs.
Will is nearly done will all of his pre-transplant testing. We are keeping our testing schedule so Will is ready and waiting when a donor is finally identified.
So far he has had a sedated echo/ EKG, sedated audiogram, and a sedated infant PFT (pulmonary function test). All of his tests have gone well so far! I am definitely an experienced parent when it comes to tests that involve oral sedation. The sedation is relatively light and patients need to be sleepy when the medicine is administered. I've officially determined the amount of time Will needs to be awake prior to receiving the sedation in order for him to fall asleep within 5-10 minutes! This has led to 4:30am wake ups in order for Will to be sleepy for a 7:45am appointment, but it is all worth it!
I wish I had this knowledge when Kate went through her pre-BMT testing as her first sedation experience was a disaster! The hardest part of the sedated tests is that Will has to be NPO in order to be sedated. Will loves food which makes withholding so hard.
Out of all of these tests, the infant PFT is by far the worst (for me). Will has been totally out for all of these tests but the PFT is so traumatizing for the parents. Will was attached to all of these devices, a mask was sealed to his face, and he was trapped inside of a box while air was forced into his lungs to test his lung function. Every time a burst of air was forced in, his body would convulse. It is awful. By far the worst test I have to witness during this process. I am so glad we are done with it.
Today we head back to Texas Children's for a GFR (kidney test), lung x-ray, bone age test, as well as a clinic visit. It is going to be a LONG day but I am so thankful none of these tests are sedated which means Will can eat and drink as much as he wants all day long!
As of now we are proceeding forward with everything related to transplant. Our new goal is a June 2 admission date which would put Will starting chemo on June 3. Obviously we need a donor before we can actually start chemo but we are holding out hope that this International donor is THE one which would allow us to proceed as planned.
I am so overwhelmed by the support we received after hearing the news about Will's donor backing out. Your support and prayers are the only reason why we are still functioning today!
Thank you for supporting my precious son as he fights for his life. Thank you for lifting our entire family up in prayer as we face this journey. THANK YOU! Your support keeps me grounded. Keeps me sane. Keeps me pressing forward for sweet Will!