157 days. It's been 157 days since Daniel's lung transplant. Just over five months of recovery, optimism and health because of our organ donor. We're so thankful for these last five months, that we've had the opportunity to get to know each other again rather than say goodbye. We've spent the last five months trying not to worry about something else happening, something else popping up to undermine the progress made from his transplant and take away our hope for a healthy life. We've been worried because that's exactly what happened after his bone marrow transplant. 86 days. Just under three months. That's how many days of recovery we got after Daniel's bone marrow transplant before his lung disease set in.
Let's go back a few months. I can't remember when exactly (that's how unconcerned I was), but at some point, I noticed a little bump, almost like a large pimple, forming along Daniel's incision scar. I kept an eye on it, but didn't say anything. A few weeks later, Daniel noticed it too. He mentioned it to his lung transplant team, who agreed it was weird, sent off a request for him to see a dermatologist, but otherwise, remained unconcerned about it. Fast forward a month or so and that original bump has grown to over an inch in diameter, plus at least four more have begun to grow along his incision site and we found two on his head. Last week, Daniel mentioned it to his bone marrow transplant team at CancerCare because he still hadn't heard from the dermatologist. Things moved very quickly from there as his BMT doctor talked to the dermatologist, ordered a biopsy for the next day and spoke to the pathologist to make sure they knew it was top priority. When the medical system moves quickly, there's usually a reason and we started to worry a bit.
Today, a week since the biopsy, we got the results. Daniel has been diagnosed with Kaposi's Sarcoma, a rare type of skin cancer that usually develops in patients with immune diseases like HIV, AIDS, or after solid organ transplants. While it is typically treatable, it is important to make sure that it hasn't spread internally to other organs, which would make it a lot harder to treat. If it comes back after remission, it is also very difficult to get rid of.
We wanted to let you all know. You've carried us through so much and have celebrated with us through the last five months. This summer has been so nice to reconnect with friends and family and appreciate how far we've come since last summer. But we can't honestly celebrate fully anymore. It's been hard over the last week to talk about how well Daniel's doing with this looming over us. We want to be honest with you, in good times and bad. This doesn't undo the miracle we had in February, but it makes it harder to look forward with the same joy and optimism we had a few short weeks ago.
We're still sorting out what this means for us, for Daniel's health, his school, our dreams, everything. For now, we've been thrown back into the world of medical tests, news and waiting. We're not ready for this. Not after February almost broke us. We've just been learning to stand on our own two feet and trust their strength and they've been knocked out from underneath us yet again. Maybe we need to accept that we will never have a normal and healthy life together. Maybe that's ok, maybe we'll find a new dream together. For now, we'll pick each other up and prepare to fight once again. I don't know how much longer we can continue to fight, but I pray for the strength to make it through one more.
Laura
