How is Rick doing now.

Hello everyone!
We're a bit further along now, and I'm slowly starting to feel a bit better. At the Prinses Maxima Center, they're surprised at how well the transplant has worked. I'm the first one they've given Ruxolitinib to prevent graft-versus-host disease, as I was experiencing terrible nerve pain from the standard medications. They'll study my case to see if this might be a possible or better option for other children in the future if standard medication isn't sufficient. 👍🏻

Currently, I have acute graft-versus-host disease. It's quite bothersome for me, but actually a good thing. This means the donor's fighting against my old cells and doing its job. I have a red, very itchy rash all over that I have to apply hormone cream to.
Fortunately, this seems to be helping because too much graft-versus-host disease isn't good, as it would mean the donor is losing to my old cells, and we definitely don't want that!

My medication has been reduced quite a bit, and I have a bit more freedom now, but I still need to be very cautious, and my condition is far from where it should be...
In mid-August, I'll have another check-up at UMCG, and then in mid-September, I'll go back to Utrecht to the Prinses Maxima Center. If things continue to go well, I'll transition completely to an adult oncologist or pediatric oncologist at UMCG. And only have visits to the LATER Clinic once a year in Utrecht for many more years...

In August, we're going on a vacation to Limburg for a week, and after the vacation, I can stop the last medication. Stopping it will likely lead to shingles. However, this could mean a hospitalization since it's dangerous for the donor, but it might also not be too bad and just a bit bothersome.

Yesterday, I turned 20, which was a bit bittersweet since Opa and I used to celebrate our birthdays together. But Opa was with us in spirit, of course. 💞 My brother Marlon bought his first house, and we've been busy with the move. On my birthday, we picked up Grandma and went to my brother's new home to celebrate there. 

The plan was to go to a Wadden island together with Grandma (crossing off a bucket list item), but Grandma has a serious wound on her leg and is in a lot of pain, so we'll do this another time.

I still haven't seen the rest of my family because I have to be cautious around children. They often have runny noses or something similar, which is still something I need to watch out for. But after my vacation, I'll get to see them again soon. 👍🏻🥰

And for those wondering if I finally have a mini fridge for my room... yes!!! My parents got me a mini fridge for my birthday. 😁👍🏻

All in all, there's still a long way to go, but this is definitely a good start. ❤️💪🏻