Tuesday, May 27, 2014

Day -2 Last Day of Chemo: Fludarabine & rATG

The day started with news that Ryan’s ANC has reached zero. Basically, his immune system has shut down.  The white cells in his marrow are gone and his bone marrow will never be able to make them again.  This news came a day or two earlier than I expected, because yesterday his ANC was over 600.  I couldn’t help but dwell a little bit on the fact that a major system within his body that sustains life is now completely dead.  He is now totally dependent on the success of this transplant.

As you may have noticed by the titles of my posts, the pre-conditioning days prior to transplant are counted down as negative numbers, similar to a rocket launch.  In Ryan’s case, the countdown officially started on Day -6. Transplant day, Thursday May 29th, 2014 will be considered Day 0. Many transplant patients also call it their “re-birthday” or “new birthday”.  After all of this, I think it is only fair that Ryan will now have two birthdays to celebrate each year.

After transplant, days are counted as positive days going up (Day +1, Day +2, etc). The first major milestone will be day 100.  It really is just a day that most transplant patients circle on their calendar and strive to reach.  It is when the greatest risks for critical side effects are past and when, statistically, the chance of long-term survival increases quite a bit.

Ryan has coughed a few times in the last 24 hours, which is concerning because his body cannot fight off illness right now.  The team has sent a virus panel to the lab and chest X-rays were taken.  We are hoping to have all the results by mid-day tomorrow.  In the meantime, Ryan is in isolation as a precaution.

Also, today he needed the dressing over his hickman line changed because the entry site has been bleeding the last few days. However, they installed the hickman line on the same side of his chest where they removed his port and he is bruised and very sore there.  The plastic dressing that they installed during surgery looked like it had melted into his skin.  A woman from IV therapy started to try to remove it, and even with adhesive remover, it did not want to come off.  Ryan was screaming in pain like someone had poured boiling water on him.  The woman seemed to think Ryan was just screaming because he was scared.  I had to intervene and tell her that his scream was definitely a scream of pain.  Then, I took over trying to get the dressing off with two different types of adhesive remover.  It took forever because it kept hurting him and I had to keep stopping, but we eventually got it off.  Sometimes its little things like that that get to me the most.

Ryan’s appetite was non-existant for the majority of the day.  They went ahead and started TPN (IV nutrition) because they don’t feel like he is getting enough calories and nutrients.  However, by late afternoon when Brad visited, Ryan’s steroids kicked in and he got his appetite back.  Of all things, he asked me to go get fish and chips for him.  So, he stayed with Dad and took a bath while I went down the street to retrieve his fish and chips.

He ended the day in a pretty good mood and, hopefully, he will have a better day tomorrow.  It will be a “day of rest” with no chemo.

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