We are so ready to go home… Ryan and I are both really homesick. Ryan has been missing his kitty, Dexter (and of course his dad and sister). Yes, we named our cat after the TV serial killer, but it seemed fitting being that our cat is also a “red head” (flame point Siamese).
The week before last, we practically begged Ryan’s team to give us a pass to drive home for just a couple of hours. I got a little bit of a speech about how it is against their policy, and that some doctors will not even consider it, but they didn’t give me too hard of a time. They decided to let us go because Ryan has been meeting his goal for fluid intake and no longer needs to be on IV hydration. However, the doctor said, “Well, if you’re going to drive all that way, you might as well stay the night.” I wasn’t going to argue with that!
We had to set up an emergency plan, and I had to agree that if Ryan even had a hint of a fever or anything else concerning, I would rush him right back to
(or call 911). Neither of us had slept
in our own beds since May 21st.
Select Comfort donated Sleep Number beds to the Ronald McDonald House
Apartments (which is really nice of them), but after all of this time, I still
can’t seem to find my “Sleep Number.” It
was heaven to sleep in my own bed!
Now that we have had a taste of home, these last few weeks in
to be dragging along in slow motion.
Ryan’s “Day 80 Work-up” started last week and continues into this
week. This is a repeat of all the tests
and exams that were done leading up to transplant, with some new tests
added. The purpose of the work-up is to review
the status of his bone marrow, determine if he has damage to his body from the
transplant, and to decide if he is on track to be discharged at Day +100. So far, he is on track!
Ryan is so sheltered right now and is really missing the social interaction he normally would have at school with his friends. The last few weeks during our clinic visits, I can see that he is just starving for interaction with people. “Stranger Danger” has gone out the window and he has become “Chatty Cathy” with anyone who will give him the time of day. He asks people where they are from, why they are there, whether they are a transplant patient, whether they have a Hickman line like his, and so on.
We don’t see many other kids at SCCA and the adult patients seem to get some comic relief from his 5-year old boy antics. He has a few “regulars” that he visits with in the waiting rooms. In fact, last week, he was asking one of his lady friends if she had a Hickman line like his. Before she could answer, he quickly pulled her shirt collar out and took it upon himself to look down her shirt. As I was cringing and trying to explain to him that it wasn’t appropriate, the woman just laughed and said “oh, that’s okay.” Most transplant patients have had their privacy violated so much that I think it probably really didn’t bother her. But still…
He has also somehow worked a deal with the woman in the cafeteria. By the time I pay for my coffee and turn around to usher him along, a full cup of whipped cream with a spoon has somehow magically appeared in his hands.
All of Ryan’s appointments lately seem to be taking twice as long because he has questions about EVERYTHING. He wants to know what every button on each machine does and how everything works. At least twice a week someone comments “Oh, you have a little engineer here.”
We have some of the test results from the Day 80 Work-up back and, so far, they are very encouraging. Here is a summary:
Ryan’s platelet count has been over 200,000 for about 3 weeks now. His red and white counts are fluctuating, but in a decent range.
His DEXA bone density scan was normal for his age (good news, because high dose steroids can do some damage.)
He had a second peripheral blood chimerism test to determine what percentage of his cells are donor cells versus his own cells. The test confirmed that all three cell lines are 100% donor (no trace of his old “bad” cells).
In addition, he had a bone marrow biopsy and aspirate last week. A chimerism done by biopsy is more accurate than using peripheral blood. The biopsy was also 100% donor.
The cellularity of his marrow from the biopsy was reported as 30%-40% with no dysplaysia (cells of abnormal shape or size). The cellularity percentage concerned me at first, because I was expecting around 70-80%. However, the team stated that a cellularity in this range is acceptable for only being 80 days post transplant. Many patients at this stage are only around 10-20%.
Ryan continues to test negative for CMV, Epstein Bar (EBV), and Adenovirus. These are the three main viruses that lay dormant in a majority of the population and can re-activate in a transplant patient, causing significant problems.
A skin biopsy was done to test for GVHD. The report stated that his skin sample was relatively normal with “a few apoptotic cells”. Translation = there is only a trace of GVHD currently; nothing major.
His kidneys are stable and his liver is doing well (common problem areas for transplant patients).
Ryan will likely need an IVIG (Intravenous Immunoglobulin) transfusion within the next week because his IGG (Immunoglobulin G) level is low. IVIG contains antibodies collected from the plasma of healthy blood donors and will replace the antibodies that his body is not currently making. This is extremely common in transplant patients who are immune suppressed, and there is a chance that he will need some repeat transfusions until his immune system gets stronger. It is interesting to note that a single dose of IVIG contains pooled immunoglobulin from the plasma of 1,000 to 15,000 donors. Thank you once again blood product donors!!!
I was very sadly reminded this afternoon of how lucky we are to have Ryan regaining his health. I learned that another young Aplastic Anemia fighter, Sydney Elizabeth, passed away today (https://www.facebook.com/fightwithsydneyelizabeth). My thoughts are with her family tonight as they cope with her passing.