Sibling Matches and a Week Without a Doctor Appointment (for Andrew)

Andrew and I ended our camping trip on Thursday, so we could make it home for his weekly appointment on Friday morning.  I felt a little bad that we couldn’t help break camp and load up, but we knew that was part of the compromise of allowing Andrew to camp with us.  We sang “The Wheels on the Bus” for over an hour in the car, and Andrew napped for at least 2 hours of the 4 hour drive.  We were grateful for air conditioning when we returned home to over 100° temperatures!

After we realized that it was hopeless to try to keep Andrew away from and off of his cousins’ strider bikes while at camp, we decided to allow him to ride his own bike inside the house again.  It had been hidden away for the past month. 

At Andrew’s apportionment on Friday, we decided for the first time to simply draw labs the traditional way, rather than insert and IV, since he hadn’t needed a transfusion the 2 previous weeks.  We made the right choice! His labs were about the same as the week prior, and he didn’t need a blood transfusion.  Hooray!  The reason this is good news is that with each transfusion, there is a chance of Andrew receiving new and different antibodies from the donor’s blood.  The fewer antibodies he has in his body, the more compatible he will be with his Bone Marrow Donor’s blood.  So fewer transfusions are a good thing.  

We finally learned the names of the three siblings that matched: Tim, Lizzy and Mark.  Tim and Liz were near perfect matches, and Mark was a very close match.  The Transplant team selected Tim as the preferred donor, and started the process for drawing labs and sending them off all over the country for analysis.  So, we are back to playing the waiting game as we anticipate Tim’s results and the labs for Andrew that had to be reprocessed.  This waiting is starting to wear on me.  

I asked the doctor, “If you had a crystal ball and could tell me your best estimate of when Andrew and Tim will be all ready to do the Bone Marrow a transplant, what would you predict as the date?”  Now, this doctor was on the Hematology/Oncology team rather than the Transplant team, but I was surprised by his answer.  He said that it could be arranged in as little as a month, just a week or two after the lab results come back. (Assuming they all look good.)  That would put his admission to the hospital before this baby girl arrives! I mentioned my induction date of August 30, and he said, “if it would be better to coordinate it after the baby comes, we could work around that.”  

This surprised me a lot! I didn’t think thee was a lot of leeway on this kind of thing.  They’d give the green light and we’d just show up.  But the doctor explained that if he was stable and not “transfusion dependent” that he wasn’t in as much of a rush.  That gave me a little peace of mind, but I still don’t think we plan to postpone it.  He’s still at high risk of infections, and because any sickness or infection could be very serious, we don’t want to take any additional risks.  In fact, it might be easier for me to stay with Andrew at the hospital without having a nursing newborn to coordinate.  I don’t even know if I’d be allowed to bring her with me!  (Note to self: look into visitor guidelines of newborns and transfusion patients.)

At the end of the visit, which was our shortest visit to date, the doctor said, “Andrew’s labs look stable enough that I’m willing to see him again in two weeks, and if you see signs of excessive bruising or any bleeding, or symptoms of anemia, you can call or come in sooner.”  Hooray again! 

On our next visit, we will meet with both teams, hem/onc and transplant, and Tim will come along.  He and Andrew, for reasons of “conflict of interest” will have two different doctors.  We will meet them both next Wednesday.  The people who ordered and drew the labs said to expect 2-3 weeks for the results, so we aren’t likely to have all the information by the appointment that we will we need to make plans moving forward.  But it seems like a strep in the right direction.  

Since that Friday visit, Andrew has had a welcome week without any incidents, pokes, IVs, or clinic visits.  However, the rest of the family made up for it: Monday, Tim had his blood drawn to check his telomere length, and other information for being the donor. Tuesday, I had a prenatal visit and a growth Ultrasound.  This baby girl was measuring almost 2 weeks bigger than her gestational age, which was a little concerning to the doctor, so he came in and re-measure the same areas and was happier with his measurements, and commented that because she’s so wiggly, it makes it hard to get a good measurement.

The other highlight for Tuesday was that Troy and I were able to get an appointment at the Jordan River Temple to complete an Endowment session, and we went out for ice cream afterward. On  Wednesday, Lizzy had an upper endoscopy, which takes a big part of the day.  

Troy accompanied her to the hospital, and I stayed home with everybody else. Visually, it looked perfect – the biopsy results will take about a week.  Thursday I had my last follow up for my broken metatarsal in my foot.  I have a green light to do any activities I want to now.  This pregnant lady is not very active at this stage of the game! Friday, all the kids and I had dental cleanings, and Mark got one filling.  Everyone else was cavity free! And I met a new provider to be my primary care physician, since I have had two of my internal medicine doctors leave their practice within the past year! Whew! What a week! This week, is actually not that out of the ordinary for my family, especially at this gestation of pregnancy.  I could relate next week’s medical schedule and it’s fairly similar.  

Troy left town Thursday morning to spend a few days with some “guys” hiking in southern Utah. Their itinerary included the hikes Zero Gravity, Alcatraz, and the Black Hole. I have been instructed not to call search and rescue before 8:00 Sunday morning! Troy knows I can be a worrier!