We are finished surgery- what a huge accomplishment for Blaise. Thanks to everyone for following along with Andrew's live tweets on Friday- and apologies if you are still waiting for a text back from us- it has been a whirlwind!
Blaise did an amazing job during his surgery- both surgeons were extremely pleased with how he tolerated the procedure, and what they were able to achieve. I am truly in awe at the talent of these two men and their teams. Life in a spica cast is actually pretty good- Blaise, as you know, is a tiny guy and so the cast, while cumbersome, is not the monstrosity I was prepared for. The good news so far is that we have learned Blaise can fit in his own car seat, and that he has been able to do things like sit up, eat, sleep and play comfortably in the cast. This is a major victory for our family as Andrew and I have tried to normalize this entire cancer experience as much as possible- so being able to still be a kid is a huge win. An unexpected win for Andrew and I is that we will likely be totally "jacked" by the end of this month- I woke up this morning feeling like I was doing deadlifts for 24 hours straight. This summer body will be earned from a spica cast! All kidding aside, we both are able to easily scoop Blaise up and transfer him from bed to chair whenever he wants. This makes us so incredibly happy.
Overall, Blaise is doing incredible, his pain is very well controlled and we are already on the regimen we can follow at home. We have had some unexpected bumps in the road post op, one of which appears to be coxsackie- he has several mouth sores that are not consistent with mucositis- the good news is they appear and have proven through testing to be nothing serious. The bad news is they just make him feel a little run down and am I the only one that thinks its a little ridiculous that this sweet boy has to endure normal toddler rights of passage in the sick department WHILST recovering from a limb salvage procedure? Hoping we are on the mend... Our orthopedic oncologist tonight said that we can start planning to go home- possibly tomorrow night, but likely Wednesday. This, will be a big win for us.
This admission has made me really cherish the experience we have had thus far. How lucky we are to be home as much as we are. It is so stressful to shuffle Lucy back and forth and for either Andrew or I to say goodbye to Blaise or Lucy each night. We are so grateful for all the care we have received thus far- however, nothing beats being home. I cannot wait to have a week or so to start this next phase of the journey reunited as our family of four. We are more than half way there- Blaise and Lucy are on a major Wizard of Oz kick, and they love all the music, especially Follow the Yellow Brick Road- so, I think right now, we are on the proverbial yellow brick road- almost to Oz (clinic maybe? that's weird- who's the wizard? Our oncologist? Okay, maybe this won't work-) , and finally home to normalcy once more.
That being said, a really cool part of being a CHOP parent is discovering things you didn't experience as an employee- Last night, Blaise and I sat in the Brodsky Healing Garden, and we had Andrew and Lucy join us today. The respite and peace that it gave me to bring Blaise outside on a warm summer evening was indescribable. I give it four stars!
Look for another post soon once we get home- I am off to enjoy the night with Lucy, and try not to miss our other halves too much. Thanks for all the support. Whether is was in person or in spirit or via a snapchat filter, we have felt all of it and can never thank you enough. Big shout out to the trio of Catherine, Shanna and Pat for raising Lucy in this time of need- she had a blast and I think wishes I was as fun as each of you!
** Don't forget to order your T-Shirt by tomorrow at 10 pm- see here! Until next time!
