I am not sure exactly why posting is such a struggle lately, but an update is way overdue. And we finally have some good news to share!
Stem cell collection went really good! We were expecting to collect for about 3 days, maybe 4. But we got everything in ONE day! Not only that, but he collected an incredible amount. One of my very first friends that I made at Jasper High School when I moved to Texas when I was 14, Lauren Coutu, happens to be working at Carter BloodCare. This is the lab that collects, processes, and freezes is stem cells. Awesome! So Lauren was in charge of processing and freezing. She said that her boss has never seen so many stem cells in the periphery (stem cells pushed outside of bone marrow into the blood) before in a child or adult!
For one transplant, you need 5 million stem cells. We wanted enough saved up for 2-3 transplants. Um, Case collected 120 million in one 3-hour session. So we have 5 bags of 6 million stem cells and 12 bags of 12 million stem cells. In essence, Case could have almost 30 transplants... Not that that is humanly possible. But "Go Case!" We loved that little ray of good news.
Saturday night we were transferred from Children's Dallas to our usual location in Plano much closer to home. It is so much nicer to be 10 minutes from home, to have more visitors, and to not have residents milling around mucking things up.
On Monday we had a CT scan, which has been a horribly dreaded event for us, as most of them lately have shown growth. But, we got another ray of sunshine when this scan showed shrinkage in the tumors. HIP HIP HOORAY! Chemo IS working! So we started our 3rd round and are almost done. We will do two more cycles, then move on to radiation and a litany of other treatments. So we are very far from any safe place and we don't feel like we can confidently say "he's going to make it," but we sure do feel ecstatic about some good news! Now we just need to take care of every single microscopic piece.
On the chest tube front, not so much good news. This morning Xavier woke up here at the hospital to find the chest tube lying on the bed next to Case outside his body! He must have pulled it out over night, but never cried or made a fuss. Unfortunately since no one knew about it and couldn't address the issue immediately, part of his lung space filled up with air, and it was increasing as time went on. It was pushing his right lung into his heart...not a good thing!
So right back up to ICU we went for placement of a THIRD chest tube! This time I stood beside the bed holding Case's hand through the whole thing. I guess you can say we have both toughened up through the last few months. I cant believe I was able to watch all of that, scalpel and all. Let me just say he needs A LOT of sedation medicine...like seven doses...to go "under." He is such a tough cookie.
We are so incredibly sick of this effusion in his chest and the resulting chest tube (understatement of the century)! The doctors don't have a solution for the leakage either. He is fasting right now indefinitely in the hopes of drying out the leak. He is allowed to drink water and snack on pretzels, so needless to say he is losing weight right now! So please please pray that the effusion will heal and that the chest tube can be permanently removed, allowing us to go home some of the time.
All of these pictures are starting to look alike. Thumb in mouth, laying in bed, favorite blankie pulled up under his chin, watching TV. It's alright, I am not going to ask anything else of him!
So pray, pray, pray. Prayers of thanksgiving and for effectiveness of chemo, and for no more chest effusion!