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!  

 

Good News is Worth Waiting For

 On Friday, Andrew had his weekly checkup. Because of a potential Covid exposure, we weren’t able to take our other kids to friends’ homes. (Side note: eventually, everyone tested negative, and I was so grateful 4 of us were fully vaccinated!) Tim and Spencer were in Moab running the Colorado river and having a blast.  So Troy went to the hospital with Andrew and kept me on video chat for most of the visit. At this appointment, the doctor had 3 wonderful things to tell us:

First, Andrew’s blood counts looked good for the second week in a row, and he didn’t need any blood transfusions! 

Second, his labs looked so stable, in fact, that his doctor was comfortable allowing Andrew to leave town and go camping with the rest of the Family for the week.  (Previously, they told us 4 hours away was too far to take him.)

Third, he had three siblings match as donors!

This was probably the happiest day I’ve had since his diagnosis.

Andrew lived in the dirt and loved every minute of it. 

What this meant in real life: Troy arrived home from the appointment and announced that the 4 kids that were home were all going to camp THAT NIGHT.  I threw together a few extra meals, and loaded some clothes, a pack and play crib, and medications into the trailer for Andrew, and sent them on their merry way.  In spite of arriving in camp in the dark, and after midnight, without his biggest, strongest, helpers along, Troy couldn’t have been happier. This trip really lifted our spirits!!

Tim and Spencer with two friends at Youth Conference overlooking the Colorado River

Tim and Spencer were due to arrive home on Saturday, so I picked them up and we arrived in camp on Saturday evening.  We go down to southern Utah, near Bryce Canyon National park and ride dirt bikes near Tropic Reservoir every summer. This is my 20th consecutive year.  I wish I had more and better pictures of the trip, but alas, because we had no service while there, my phone, and corresponding camera stayed tucked away for most of the week. 

Oh, you’re probably dying to know who the siblings are.  We are too!! I guess there are a lot of people that make up Andrew’s medical team. The doctor we saw in our clinic visit on Friday saw a note in Andrew’s chart with the statement that there were three matches, but there were no other details.  I pressured him to find out, but unfortunately, the gal who made the note was working from home on the Friday before the 4th of July weekend, and was curiously unavailable by phone when he called and texted her. Haha! I hope she had as great of a weekend as we did.  I felt so relieved and happy that we not only had a match, but had options, that the specifics of who the donors were didn’t seem to matter.  So we all made our guesses and decided we would find out when we returned home from camp.

Almost everyone who camped with us

No campfires, but we had a propane “fire” that was the next best thing

Partway Through the Camping Trip

On Tuesday, July 6, I had an ultrasound and prenatal visit with my Maternal Fetal (aka High risk pregnancy) doctor.  By the time we found out on Friday, that we could all leave town, it was too late to try and reschedule, so I woke up bright and early and headed back to Salt Lake City.  I’m not gonna lie- it was so nice to have a nice long, hot shower after living in the dirt since Saturday.  Everything in clinic went well.  I received my Tdap immunization to protect this baby girl from pertussis after she arrives, drew routine bloodwork/labs, had a fun cervical check since I’m constantly having contractions and was worried that they might be progressing me toward labor.  But the cervix is still completely closed and very high- as it should be for 30 weeks gestation.  

And I got an induction date: Monday, August 30! For a planner like me, I was so happy to put that date into my calendar.  I still have no idea what part of the Bone Marrow Transplant phase Andrew will be at that point.  I predict that he will have received the transplant and be inpatient at the Children’s Hospital on August 30.  This would make for a very complicated delivery and hospital stay for me; but honestly, we can roll with almost anything. We really do have a great support network of family and friends and I couldn’t be more thankful.  

During the ultrasound, literally in the middle of the scan, my phone rang.  

Normally, I would ignore it return the call later, but I was a little worried with Troy and Andrew and the family being far away, that maybe it could be something urgent. So I hopped off the table with my giant belly covered in ultrasound gel, and got my phone out of my purse.  The caller ID showed the name of the boys’ High school.  Not urgent. I returned the phone to my purse, and climbed back onto the uncomfortable table.  No less than 5 minutes later, it rang again.  Sheepishly, I interrupted the ultrasound for the second time.  This time I didn’t have the number in my caller ID.  I asked my ultrasound tech if she minded if I answered, and she was so understanding.  Because I have had weekly scans for the past 5 weeks, and she’s been the tech for 4 of them, she’s heard a little about Andrew and our situation.  I answered the call and it was Andrew’s genetic counselor. As the counselor talked, my devoted tech silently finished the scan, printed some unrecognizable pictures looking more like static than a baby’s body, and waved a friendly good bye.  I believe in angels.  She’s one of them. 

I was expecting the genetic counselor on the phone to be announcing who the matched siblings are.  She didn’t. And she couldn’t find out. Okaaaaay. 

She was calling to tell me that one of Andrew’s blood samples that had been sent out of state to a specialized lab was compromised.  They needed to re-draw his blood and send them off again. This specific test looks at over 150 genetic markers, so I understand that it will give the docs some valuable information, but I was so frustrated to have to begin the waiting game over again.  She said the results typically come in 21 days, but that they would order it STAT, which reduces it to two weeks.  

I was still on the phone with her when a doctor (not my doctor) arrived to tell me the ultrasound results. Luckily, I already knew, because I have become very adept at reading the Doppler and know what the numbers should be. Although the techs aren’t technically allowed to interpret the sonograms, they can tell you the facts; and if you know what the numbers should be, you don’t have to wait for the doctor to read the scan and come tell you the results.  I felt a little rude to be on the phone when he came in, and I asked the genetic counselor to hold for a moment when he entered. I said, “Everything is normal and you want me to return in one week, right?” He confirmed this with a nod and I thanked him and he left.  

Briefest doctor visit ever. 

After my appointment, I quickly watered my mom’s houseplants, then headed back down to southern Utah to finish my week camping with my family.  I’m so grateful for this much needed vacation.  Even if it was interrupted by an ultrasound and doctor appointment, which was interrupted by a genetic counselor. 

No News is Good News… I think!

 I know it’s been a while since I posted an update, but I don’t have much that’s changed.  We have had 2 outpatient clinic visits.  They were (as far as I can tell) fairly routine.  They tested his blood levels when we arrived.  On June 18, he needed red blood and platelet transfusions, which took almost 4 hours on top of the doctors and things.  It can sometimes be tricky to keep a kid entertained for that long when your in a small exam room.  We were there almost 8 hours that day! 

The following week, June 25, it was another routine, long, appointment.  His blood levels were slightly higher than the week before, and it was the first week since his diagnosis that he didn’t need any blood transfusions.  The cutoff numbers for platelets are 10k and his were 14.  For the red blood,  if (I can’t remember which is which)-hematocrit or hemoglobin is below 7% they do a transfusion, and his was 7.2%.  So they are still considered critically low for a healthy person, but they have different criteria for kids with bone marrow failure.  

At the appointment last Friday, we met with the Bone Marrow Transplant specialist.  He spent over and hour with us explaining all the ins and outs and procedures relating the actual transplant. It was very informative, and another “information overload” type day.  But I came away feeling much better overall.  Knowledge is power, in my opinion, so I felt much better armed with a lot more facts.  

Playing play doh at the doctor’s appointment 

We are still agonizingly awaiting the results to find out if any of the other kids is a bone marrow donor match for Andrew.  We have another outpatient clinic appointment tomorrow, and perhaps they will tell us then.  Being in this holding pattern has been a test of my patience. 

I realize that the doctors need results and data and facts to make sure that when we move forward with a treatment plan that it’s the best plan.  But I am feeling a bit helpless and just want to be doing something.  I am tired of playing the waiting game.  

One profile picture and one 3-D ultrasound picture!

On another note, I had some ultrasounds, and baby girl is looking great, and growing well.  She’s measuring a week or two ahead of her due date.  I hope that doesn’t mean she’ll be a giant baby to deliver!  Troy is planning on taking the 5 big kids on our annual camping/family reunion dirt bike trip, and they are really looking forward to it.  Andrew and I will be sad to miss it.  We make some great memories there.  Andrew’s doctors just weren’t comfortable having him 4+hours from the hospital, should something unfortunate happen.