Before I write about his first day home, I just wanted to remember our drive home from the hospital. He appreciated being out in the sunlight and fresh air again and rolled down the window and enjoyed the air on his face. It was such a nice moment and I remembered how, when he was first admitted, he really wanted to be able to open the windows in the LPCH room. Of course we couldn’t, so it was an adjustment but he did it! 25 days without being out of his room — an impressive accomplishment.

Plus, I got my Car DJ back — yay!

Friday was a bit rougher than previous days had been as the nausea and vomit paid us a visit. But we are well-versed in vomit’s tricks, so, along with the help of our clinic visit, we were able to get a routine around ativan and a new form of zofran that Sam can swallow (the other one went under his tongue and dissolved — I think it gets into his system faster because of this but it hasn’t tasted great for Sam so glad to have this new option). 

Sam’s blood work continues to show good progress. He did get some signs of engraftment syndrome on his palms: a rash/set of darker red spots. They don’t itch or bother him, thankfully. Dr. Shah gave him some topical steroid cream to put on 2x/day and said to keep an eye out for more rash over his body over the weekend. A significant increase in rash would mean we might need to come back in, but a little bit is expected. We’re still navigating all the new things to monitor and prioritize.  The key ones are fever (100.4 degrees or higher), diarrhea, and rash as these could indicate infection or graft vs. host disease.

Friday evening we played family Mario and I didn’t have to bubble the entire time (though I did strategically bubble when asked). I was able to navigate the gears and jump up and avoid the pitfalls that were trying to knock me (and all of us) off! And I was the first one up the level at one point. 💪🏼

Saturday was a great day — Sam woke up to go to his Palo Alto Soccer Club’s game at 8 am — an early start but he was happy! His team was psyched to see him and he said to his coach “My cancer is gone!” And his coach gave him a fist bump. #FULeukemia. And the team won 3-1!

Sam’s 2nd stop was Zack’s game which was close by. The doctor cautioned him to not get too much sunlight exposure as it can trigger graft vs. host disease so we brought a big golf umbrella and sheltered under it. Our team dogs found us as did our other friends — and we had some laughs at our funny new set up. Zack’s team won their game too: 4-0 and Zack got a goal!  He scored off a free kick that was “perfect” and “top bins,” which means a shot to the top corner of the goal, which guarantees the goalie will miss it. 

And the nausea was minimal and the vomit was absent too. And the weather was beautiful! Chess games were played as was Overwatch. There was even mention of starting school work on Sunday — wuuuuut!?!??! 

Oh, and I planted my tomatoes — ☀️🍅👩‍🌾

#LFGStemCells

#TeamSamStrong

#Yougoneleukemia