Tim definitely notices a difference in how he feels since his transplant. In fact, he recently told me that before he was diagnosed two-and-a-half years ago, he was at 1000%. Now, six weeks post-transplant, he’s at 999%. He “just needs that one percent to be all the way better.” 

He’s playful, sassy, and active. He’s playing with other kids at the Ronald McDonald House playroom, and I get flashbacks to the carefree kid he was years ago. Yesterday, he was even trying to get Shay to run around, which is a total 180 from how things usually are. He’s already asked to go out to the patio in the hospital after clinic because he “wants to run around and it’s the only place he can right now.”

However, it doesn’t look like the new treatments – plasapheresis and obinutuzumab – have been enough to get him into remission (at least not yet). His labs aren’t where they need to be, and he’s still struggling with some of the FSGS symptoms that plagued him before the transplant. He’s getting increasingly distressed that he’s not growing, and hasn’t since he was four years old. Almost every day, he says he wishes he could grow “just one inch.” His swelling isn’t as bad, but that’s likely due in large part to the four to five bags of albumin he receives twice a week during pheresis. 

Now, we’re moving on to LDL apheresis, which is a treatment for FSGS that’s only approved for Humanitarian use when the disease has been resistant to everything else. It requires 12 sessions spread out over nine weeks… which puts us in Pittsburgh through the middle of August. It also means putting Tim back on high-dose steroids… Yay.

In all likelihood, we’ll stay here for about three more weeks while Tim receives twice-weekly treatments, and then return home. For the six weeks following that (at least), Tim and I will drive up to Pittsburgh once a week so he can meet with his team and continue receiving care. It’s 9+ hours each way, so it’ll put a lot of miles on the car and hotel charges on the credit card, but it’s probably the best way to help Tim navigate his homesickness, put Shay back in her element, and make the overall situation easier for everyone involved.

This plan means Tim will be coming home with his vas cath, which he was adamant that he would not be doing. But after realizing he could potentially go home in three(ish) weeks instead of nine… he was very receptive to the proposal. Being far away from home with a kiddo fighting a chronic disease and a wild two-and-a-half-year-old has been… challenging, to put it mildly. For everyone. The Ronald McDonald House is incredible, and I’m really thankful we have the opportunity to stay here. That said, I think we’re all ready to go back home, at least on a part-time basis.

I feel like I keep saying this, but hopefully this is the key to remission… if it’s not, I don’t know what’s next. Tim’s starting to worry, too. So, I’m manifesting that this will be the key to it all.

Fingers crossed.