Miscellaneous Questions and Answers

A friend e-mailed a few questions about Tyler and I thought that others might have the same questions, so I should answer them on the blog.

1. Is Tyler sleeping all the time (like before)?

Tyler is not sleeping full nights yet, but he is sleeping better. He's actually been using a drug called Ativan to help him sleep at night, but gets about 6 hours of sleep in a typical night.

2. What is the status of Tyler’s foot? Has it returned (or worsened) due to recent radiation and chemo treatments?

Tyler's foot continues to be a source of frustration for him. While he can move his toes about an inch upwards, the foot is still extremely sensitive and largely unresponsive. It has not worsened, but we expect it to be a long time before it completely heals. There is also a risk that it might never heal completely. Tyler worries that he will have trouble working if it does not heal, as his job as a groundskeeper requires him to be pretty mobile.

3. Is Tyler reachable via email?

Tyler is not currently reading his e-mails, although he will probably catch up on them someday. If you need to get a message to him, you can e-mail me to pass along your message.

4. Is the radiation risk completely over? Did it “wear off” or something, such that he must no longer be isolated?

As I understand it, your body actually processes and excretes radiation through your urine. So Tyler got a radioactive transfusion Thursday before last, but his body was able to process and excrete the radioactivity over the days that followed. He was released as soon as he was under the safe guidelines for our state. The radioactivity level would continue to drop as his body continued its normal functioning. While we haven't measured him in the last few days, I would guess that he is probably not radioactive anymore.

5. Is TBI a round of intense radiation? I did not realize that he could be an outpatient at this point in the process.

Tyler's TBI tomorrow will be outpatient, which sounds like it is normal for these procedures. Actually, we were also surprised by how much of this is outpatient. According to the radiation oncologist that is handling Tyler's TBI, he is getting the smallest possible dose of TBI. They are only doing this to help suppress his immune system so that it will accept the foreign marrow.

6. Are the doctors already discussing possible complications due to partial match (half-match?) on the donor vs receiver? I did read the CML booklet on this, and it of course acknowledges a wide range of possibilities.

The doctors prefer not to tell us about things like possible complications, although they likely discuss them in their morning rounds (when they discuss each of their active cases). The half-match issue has been my biggest worry throughout this process. It is my opinion that someone wanted Tyler for this study so they never attempted to search for a better match in the world bank. While we pushed and pulled on this issue, we made no headway in getting them to give us additional options for the transplant.

There is however, an upside to using a parental half-match. Typically, you experience less graft versus host disease (GVHD) with a related donor. I'm not sure how things will work since there will likely be an increased risk for GVHD with a mismatched donor and less with a related donor. I'll try to address GVHD more in a future post, as it is a big issue with transplants.

7. Are you able to work a reasonable number of hours? You must be running constantly, exhausted.

My coworkers have my undying thanks for allowing me to be with Tyler throughout this process. I'm not sure how I can ever make it up to them, but their flexibility has made all of this possible. I work as often as I can, often from home or the hospital. We've pared down my responsibilities as much as possible, but I feel guilty not helping out more. I was working 1-3 days per week, but am mostly off now. I only worked 4 hours from home this last week and plan to be off completely this next week as well. I'm the lead on a big project at the end of February, so we'll see how I balance work and home as I get closer to that deadline.

I also owe my thanks to the friends and family members who have helped us to keep up with day to day tasks. Several of Tyler's high school buddies came up and weeded our front yard (since I would have probably pulled out all of the plants without Tyler's guidance) and completed some home maintenance, Debbie (my mom) who helps with grocery shopping and house cleaning, and Andrea (Tyler's mom) who helps get Tyler to appointments so that I can sneak off to work from time to time.

Several others have offered to help, but timing doesn't always work. Even if we haven't been able to take advantage of your kind offers, we certainly appreciate them!

We are both getting tired though and are ready for some time of normalcy. Sadly, I think we have a little bit of time before we get there. If Tyler's side effects are kept to a minimum, we may have some downtime over the next 2-3 weeks while waiting for engraftment. Once the new marrow starts making blood, any side effects that he had should start to diminish.

I hope that answers a few of your questions as well!