So sorry we have been off the grid. There were multiple contributing factors for the radio silence, nonetheless, we are back. Since we last spoke, Blaise completed cycle 5, had mid-treatment scans, and got a new play room.
Cycle 5
Once again, Blaise made counts. He continues to exceed expectations of all with this feat. We were told to expect delays and not get too hung up on them. However, he has not had one yet. I write this on the eve of cycle 6, and it's going to be tight to make platelets, but I am hopeful and confident that he will have a strong showing tomorrow ( I sound like I could run for President this fall).
Anyway, we don't know why he is blasting through this- but we are so glad. It brings the end that much closer. I like to think that maximizing his time at home as somehow contributed, but of course I am biased. Truly though, being home as much as possible has definitely helped his mental and emotional health. Don't get me wrong, we have definitely seen an increase in shyness and "clingy-ness", but we are giving him a pass with some of that because, ya know, Cancer.
We avoided vehicular puke-fest this cycle but of course scored a fever and a few transfusions on our off week. Off week is a funny word, because they tend to be more eventful then our chemo weeks. But, we did not have an inpatient admission this time, so, win.
Blaise went to PT last week and he did SO WELL. I was so happy about this, they really feel he is walking into surgery as strong as can be. Everyone was so impressed with him, especially Andrew and I.
Scans, Man.
So- we had scans this past Thursday- vomit. Anyone who has talked to me since diagnosis usually will say I have it pretty together. Until we talk about the scans and then I am all OMAGAWDWHATIFTHECHEMODIDNTWORKOHMYGAWDOHMYGAWDWHATDOYOUTHINK?!!?!?!
So, those scans came. Thankfully, Andrew was not worried about them at all, nor was anyone else in the Division of Oncology. But I was. I think I had a touch of PTSD related to how out of my control his diagnosis was. My bestie Cathe came with Blaise and I and sat with me. I was physically anxious the entire time Blaise was back there. This was the first time we were truly evaluating all his hard work the last 11 weeks. Its difficult to look at a kid and know they look good and use that as your gauge. Well, that's not true. When they were my patients, I always trusted that gauge. But this time around, as his Mom I just couldn't fully believe my gut. But, everyone was right. His scans were great- his leg looks the same if not better (more on that) and there are no other nodules elsewhere.
The leg looks the same if not better- kind of a weird thing right? Well, if you remember his disease was caught so early that there was no soft tissue mass extending from the tumor. If there had been, you would expect that to shrink from chemotherapy. However, Blaise's MRI simply showed that that part of his leg is not normal. The I&D that he had before we knew this was cancer also contributed to the bone not being normal, so all that matters is that that part has GOT TO GO.
Next Steps
So, now that scans are out of the way, the orthopedic oncology team will confirm their surgical approach and we will have a meeting with PT, ortho, and onco to discuss Blaise's surgery and his road to recovery. Now that I know he has responded to treatment, I actually feel excited to get this next step out of the way. However, I do feel pangs of sadness when I look at how functional this sick leg is. He is running jumping and playing, and in a few weeks, we will take that away from him. However, I hold on to our Orthopedic Oncologist's words- "What's six hard months when you have 85 years of a great leg?" So, I try to just stay excited as this next step brings us one step closer to the end.So, tomorrow we start cycle 6- hopefully. Surgery is supposed to be post count recovery of cycle 6- but right now surgery is scheduled for May 18th- that's because most of these kids get delayed by now- so Blaise is way ahead of schedule. Because of this, we will probably need to either move surgery up or give another cycle of chemo before surgery if it cannot be moved up. The rationale for this instead of letting Blaise have about a month off is to keep his treatment as compressed as possible, as the research has showed that Ewing's Sarcoma patients who receive chemotherapy on a compressed timeline have the best outcomes.
Thanks to those of you who have been praying, it means so much to us.
Playroom Reveal
So, many of you have probably seen the video of Blaise's Playroom Reveal. Basically, Wednesday night, the night before Blaise's scans, we received the most generous gift we could ever ask for. Blaise and Lucy got the most beautiful and extraordinary playroom. And Tim Moore, the man who went above and beyond to exceed our expectations, also gave Blaise a playhouse in his playroom. AND he stuffed Daniel Ochefu and Ryan Arcidiacono in the playhouse. FOR.REAL. We were SO surprised. The guys were so kind, genuine and sweet with Blaise. We will never EVER forget that night. Andrew and I are so proud to be part of the Villanova Family. We want to once again thank Tim Moore, Ree Dunphy, Ashley Howard, Ryan, Daniel and the entire Villanova Basketball team. This morning (Sunday) when I asked Blaise who he played with yesterday (expecting to hear Grandmom) he said "The Cats! Ryan and Daniel!" Clearly, you all made such an impact on our sweet boy- thank you so much!
See you next time, and enjoy some pics from the Phillies Game today!
-Annie
