September 17, 2012
I can’t imagine how this all would have played out so far without prayer. Thank you for believing in the power of prayer and lifting up this time in my life to the only One who could do anything about it. That’s why I was not too surprised when against the odds and despite my immune system being in its most fragile state, I made it through the first 10 days without fever and engrafted perfectly (meaning the SCT worked just as it was supposed to).
After lying low for the first 15 days or so, I started to reintroduce my body back to the world a little bit at a time. While still wearing my mask, I got to get out of the apartment with my new immune system a little bit, go to the park and ate a Krispy Kreme doughnut as my first item of outside food since the SCT. My dad along with my sister and nephew who I hadn’t seen in a month came and visited me at the apartment. Then last week my oldest sister from VA came to visit and give my mom a few days off.
Everything was on point, until over the course over several days…I got allergies that turned into a cough, that turned into chest/back pain, that turned into fever. And the golden rule if you are a sick cancer patient at Vanderbilt is–if your fever reaches 100.4, call the doctor immediately. (It’s that little ‘.4’ that matters: 99.9- don’t care, 100.1- keep watching it, 100.3- still not there, 100.4- call right now!) So of course, what follows the “fever call” is going into the hospital with the expectation of staying at least a couple of days.
When I got there, my fever had reached 102.3, which is the highest its been in a few years. I ended up staying in the hospital to be monitored and receive IV antibiotics from last Wednesday to this Saturday afternoon. After chest x-rays/scans and deciding it wasn’t pneumonia, the doctors best guess is that it is some kind of virus. But in SCT patient’s case a little virus, can turn into a big deal.
I’m glad to be out of the hospital and hoping I’m well enough to stay out. (My goal is to get better before Friday so I can enjoy my birthday.) I’m still going in for clinic visits, but since Day 10 they have become less and less frequent. Before my fever last week, I had only been going in to the clinic twice a week.
It’s hard to believe that I have lost all of the immunities I spent my whole life building up since I was a baby. Every bug I fought off, every cookie I ate off of the ground, every gland that swelled up, every new germ I met, was all part of the process of carefully building up my immune system so that it could be strong enough to hold its own in my adult life. Now with a 4-week-old infant’s immune system in a 21-year-old’s body, I’m relying on a couple of pills I have to take for the next few months to do that until I can get my one-year vaccinations/immunizations.
I’m happy to be on Day 28 today. Day 30 is a major checkpoint after the stem cell transplant: I get a PET scan, my catheter taken out of my chest, and I get to stop clinic visits! The question of radiation still hangs over our heads, but we will know more about that after the PET scan.
IN A NUTSHELL
- Better than most, I made it to Day 10 with no fever, and my immune system is right on track!
- I got sick with fever last week and had to stay in the hospital a few days; I’m back at the apartment and feeling better, but still recovering
- I will have a PET scan this week, so prayers for good results and about the radiation decision would be great