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.