Back on Schedule

It's been exactly a month since Ryan's last update, and he continues to be amazingly resilient. He had to continue the at-home antibiotics until just a couple of days ago when the abscess from the ruptured appendix finally went away. After over a month of delays, he was able to start the next phase of treatment (Interim Maintenance 1) on March 15.

This is the phase where he gets admitted to the hospital for several days every two weeks. We were initially told that 3-4 days is standard for them to administer the chemo (high-dose methotrexate) and then monitor him and keep him on fluids until it's mostly flushed out of his body. However, it turns out that can sometimes take more than a week and there's really no way to predict it. Since it's not a certain level they're shooting for, but the rate at which the level of methotrexate in his body is decreasing, he ended up spending a full 7 days in the hospital again waiting to hit a moving target. The doctors said that although annoying, this was nothing to be concerned about and it's not necessarily an indicator of how the next three admissions will go.

I'm very grateful that Ryan's sister Lisa came to stay with him for most of that week so that I could go out of town for a few days. It was hard to be away after being in this little bubble together for so long, but I was thankful that Lisa made the time and effort to make it possible for me to spend some time with friends and have a few days of "normalcy" - whatever that means anymore.

We've had some beautiful weather in Indy lately, so we try to get outside and walk as much as possible. The fresh air makes a world of difference, and it helps to see the light at the end of the tunnel a little more as spring comes around. We're watching lots of basketball and enjoying the view of the world's largest bracket from our apartment. We even got out for a long walk last night to see all of the March Madness festivities and check out the new Bottleworks District - the first time we had walked around downtown in about 6 months.

Today has been a big day for multiple reasons:

1. Ryan had his port de-accessed (the needle taken out) for the first time in a month and a half. When it's accessed, it can be tender and itchy, and he's not allowed to take real showers or get it wet at all, so he's very excited to be "free" if only for a couple of days before he goes back in for treatment on Wednesday.

2. He got his second vaccine dose! Although there isn't really data right now on how effective the vaccines are in cancer patients or immunocompromised people, the timing actually worked out quite well where his counts are a lot higher right now than they have been. This won't change his behavior too much, but still gives a little peace of mind that we're both fully vaccinated now. We're also very excited that anyone 16+ in Indiana is eligible for the vaccine starting this week, so hopefully all of our friends will be able to get the jab soon. The next few months will probably be kind of bittersweet as other people start to go back to normal, but we do hope we can see our friends a little more. We're learning to celebrate the little things as much as possible. There might not be one day where everything suddenly goes back to "normal," but there will be moments and improvements along the way that will get us through.

Other good news:

When Ryan got a spinal tap at the beginning of this phase, it still showed no sign of cancer cells in his spinal fluid (meaning the treatment continues to be effective). They expected this result, but it was still a relief after his treatment being delayed and having so many unexpected twists and turns recently.

His foot pain also seems to be getting better and his mobility is improving each day. He's on a different medicine for the neuropathy now, and it also helps that he's recovered mostly from the appendectomy so he can use his core more now. He commented the other day that he didn't really have time to process the fact that he has to wear leg braces now. That seems to be how this all goes - things change so quickly, you don't get a chance to process until later.

He never asks for praise or acknowledgment, but you all should be very proud of Ryan. He bounces back from tough situations unbelievably quickly and perseveres through physical and emotional pain with a positive attitude. His 26th birthday is exactly one month from today, so if you could all send out wishes into the world for a great birthday month, no one deserves it more.

We got out to see the 3D bracket in the new Bottleworks District in Indy.
You can see the "world's largest bracket" on the side of the JW Marriott (the blue building) from our balcony. They update it each day with the winners! 

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