Moving Forward - at Warp Speed!

I wrote the body of this post Tuesday, when we got the phone call, but wanted to add some pictures. But didn’t get around to adding them and publishing it. So now it’s Thursday and we’ve had the clinic visit with the Bone Marrow Transplant team and they gave us enough information and a schedule for the week to make your head spin!! Read the original post, then I’ll add a bit at the end of what we learned today and a photo of the schedule for the next 8 days!! 

Passing the time as we wait for blood count results 

Although we have had 2 clinic appointments with Andrew since I posted last, we haven’t had much to update. His blood counts are stable, even increasing slightly and he’s stayed healthy; in spite of Mark getting a cough, runny nose, and fever that lingered for 2 solid weeks. I tested Mark for Covid twice. Both negative.  Thank heavens. 

Four weeks ago, Tim’s blood was sent off to Vancouver for testing and we finally got the results this morning.  Last Wednesday we asked the doctor, “Can we more forward with planning or scheduling before we get that lab report?” Simply put, no. So when the doctor called himself to give us the good news that Tim’s results were all favorable, we were so relieved.  I’m not sure I would be able to handle another month of waiting for the same test to be performed on the other donor matched siblings.  All the waiting has been grating on my last nerve! 

Once we have an appointment with the Bone Marrow Transplant team, we will have a better feel for the timing of when this will all take place. That appointment will be Thursday afternoon. 

Baby’s profile

And a quick baby update: I had a growth ultrasound today and Baby Girl looked great. She scored 8/8 on her biophysical profile.  She measured about the 83rd percentile for her gestational age, so we might actually get a chubby baby. Time will tell. I am scheduled to be induced on Monday, August 30. I’ll be exactly 38 weeks, which is routine for diabetic moms.  I’m feeling bulky and awkward and am having waaay more contractions than any woman who's not in labor should feel.  

And big kid update: School begins on Monday! All the kids are disappointed that summer is ending, and I love having all my kids home. We have so much fun together. But they are excited to see their friends again and meet new teachers. While Andrew is in the hospital, and for the time leading up to that, we will need to be very careful to keep everyone in the household healthy. My kids will all be wearing masks at school, and we will likely limit our gatherings to very small groups. It should be easier to do, because of  Covid, but it will still be an adjustment after the feeling of freedom we’ve enjoyed being vaccinated and mostly mask-free this summer. 

Exhausted after a long day of appointments. 

Thursday update: I spoke with the bone marrow l transplant coordinator on the phone yesterday and told her we wanted to get all of the pre-transplant to-do checklist done ASAP in hopes of getting Andrew admitted before this baby arrives. When she handed us this schedule, I was shocked!! She really delivered! We will have appointments and busy days every day between now and next Friday, but if you look closely, he will be admitted one week from tomorrow. That is amazingly fast, as anyone in the medical world can attest. And if you look closely at the schedule picture, you’ll read at the bottom that next Friday Andrew will be admitted to the hospital for a minimum of 4 weeks. 

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.  

First Fever and Unplanned Hospital Visit

On Monday evening, which also happened to be Flag Day, as I was getting Andrew changed into his jammies, I noticed he felt warm. (Cue suspenseful music.) In the hospital, they always took his temp under the arm, so I did that first, and got 100.0°, and again on the other armpit and got the same reading.  To be certain it wasn't a thermometer error, I got out the ear thermometer and it registered 100.2 and 100.4. Because 100.4 is the "magic number" for fevers and calling the doctor, I instantly felt a dread creep over me. The two things the doctors had been emphatically warning us about avoiding: fevers and head impacts. 

I called Liz and Mark into my room and we each said a little prayer while my thoughts were still reeling,  and I knew I needed to keep my wits about me. I decided it would be best to get the little ones to bed and settled before I headed to the hospital. So I went upstairs to their room and sang them their bedtime songs while I texted Troy the newest development. 

He replied asking if I had called the doctor.  Um, nope. I'll get right on that.  Oops. So much for keeping my wits. 

I tucked the littles in bed and called the hospital and asked to have them page the on-call Hematology Oncologist. My phone quickly rang,  and I explained to the doctor about his fever and lack of any other symptoms.  She told me to take his temp again, one hour after I noticed the initial fever, without administering Tylenol or any medications.  If it was still higher than 100.4°, call back, and she’d notify the ER that we would be bringing him in. 

While I prepped my to-go bag in the 30 minute waiting time, Troy and the boys came home from their Flag Day duties.  Troy showered and threw a bag together and I rechecked the temperature: 100.7°.  Noooooo!

I reluctantly called the doctor back and she told me what to expect: check in to the ER, put in the IV to draw blood levels and begin a blood culture to look for infection, then begin IV antibiotics.  She told me that the general criterion to come home was to be fever free for 24 hours, and plan on a minimum stay of 48 hrs.  

Troy insisted on taking the overnight shift again.  This did make sense, since I had an 8:00am ultrasound the next morning that I now needed to figure our childcare for.  It was past 9:00 at this point, and most of the kids were in bed. Andrew was very excited to be loading up in Daddy’s truck.  As I hugged them goodbye, I was fighting to hold back tears, and Andrew was grinning ear to ear and waving and smiling and saying, “Bye-bye, Mom!” I thought to myself, “Oh, if you only knew what lies ahead.” He does not like having the IV attached to his wrist, or the hospital ID bracelet on his ankle. 

They arrived and checked in, and as the doctor on the phone explained, they did all those things.  He did register a fever when they arrived around 10:00pm.  Andrew was very sleepy and they made a Facetime call to me.  We said good night and I sent a video to Andrew telling him “I Love You.” And he sent me this sweet video back.

He fell asleep in Troy’s arms an hour later. After a few hours in the ER, they transferred him upstairs to the inpatient room. When they checked his vitals there, he didn’t have a fever. That’s good news. 

Andrew slept pretty well, all things considered. Troy didn’t.  

The next morning, a friend texted me super early in the morning, and it worked out that she was able to watch my little kids so the two biggest boys could still get to Cross Country practice at 7:00am, rather than be stuck home on babysitting duty. 

On my way to my ultrasound, I called to check in with Troy, who answered the phone in a whisper.  “Is Andrew still asleep?” I whispered back.  He answered in the affirmative and I told him I’d a call back after the ultrasound. 

Everything looked good with baby on the ultrasound, so about an hour later I texted to see if Andrew had woken up yet. He had just gotten up, and was ordering breakfast. I asked Troy to FaceTime me when they came to do rounds.  I arrived home just as Grandma was starting piano lessons with Liz and James.  

I went to my room and Zoomed onto my presidency meeting and enjoyed visiting with the other 3 amazing women.  I told them Andrew was in the hospital again, and they all offered to do whatever we needed. I told them we didn’t know much at this point. But that if the doctors and Troy called, I’d need to leave the meeting early.  It was such a welcome respite to be able to focus on something other than my own crazy life for those 45 minutes. It’s so wonderful to counsel together in behalf of the women we love.  

Just as we were finishing up, Troy send me a text saying that the doctors were gathered outside their room.  

I logged off one call and onto the other.  In the meantime, Grandma had finished the piano lessons, picked up Tim and Spencer from practice, and dropped them off to their piano lessons.  

Five doctors made up the team doing rounds this morning. They introduced themselves, and they explained that since Andrew was looking so good, and hadn’t had a fever since his admission, that they would watch the culture results, give another round of IV antibiotics and likely discharge him later that afternoon!  This was waaaay better news than we had anticipated. They reviewed his blood counts, which were all low, as we could have expected, but his platelets were not as low as the previous week- they were 15,000.  When the inpatient doctors left, and while Troy and I were still connected, Andrew’s usual doctor walked in! He said that there was not a lot of sense of coming in for a clinic visit the following day, and he recommended rescheduling for Friday. He talked to us about infections, about his specific blood counts and how much they had changed in the past 5 days.  He said to expect red blood and platelet infusions on Friday if the trend continued.  He also said to expect to have many unexplained fevers and check-ins to the ER over the next little while. He told us that only about 30% of the fevers they see in the ER in these kids can be attributed to something.  Most of them are a mystery. We finished with the doctor, and Troy and I decided it didn’t make sense for me to come up to the hospital when the big boys finished their piano lessons; as we had been planning.  So around dinner time, they appeared and Andrew was very happy to see the family.  

James wanted to surprise Dad by mopping the floors, so we enlisted everyone to help vacuum and pick up their assigned rooms to get the job done.  He spent many hours with that mop and the floors looked great! It was the perfect “welcome home” surprise.  

I am so grateful our first “return trip” to the hospital was so uneventful.  

Future Heros? Hopefully we Find a Match

On Monday afternoon, the kids and I headed down to the lab on the corner and all 5 kids agreed to get their blood drawn to see if they would be a potential match for Andrew's bone marrow transplant. It will take at least 3 weeks for them to process the 7 vials they each contributed and get the results. 

The 4 oldest kids climbed onto the draw chair and sat calmly for he poke.  Mark, who's 4.5 years, was nervous with anticipation. When they called him over I went with him, knowing it would be helpful to have an extra set of hands. He cried before they poked him, but once the needle was in his arm, and they told him the hurting part was done, he settled right down.  (Which honestly surprised me.) Lexie and Mary, the phlebotomists there, deserve all the credit for that.  They knew all the tricks and techniques to distract kids from the needle. I wonder if he was a little dehydrated because it took almost double the time to fill his 7 tubes than the other kids.  Or he might just have smaller veins.  Eventually, he filled them all and I deduced they all earned ice cream, even though dinnertime was less than an hour away. 

So, we went to Macey's deli and got giant soft serve cones. (Best kept secret: Macey's has the best bang for your buck when it comes to soft serve ice cream.) They also have dole whip for the more "refined" palate. 

I am so proud of these kids!  

As a side note, many have asked me how they can get on the Bone Marrow registry.  There are many companies.  Here is one I found. https://my.bethematch.org Its a quick process: simple health questionnaire, then they send you a saliva sample kit to fill and return.  My sister said it was easy. You do have to be age 18, and its a national (maybe even international) registry so you could be matched to a stranger from anywhere.   

The First Clinic Visit

Information Overload

Over the past week we mainly watched for head impacts and fevers, and went about our usual, day-to-day lives. Going into this appointment, we weren't sure what to expect. We knew they would be running a lot of tests to search for an explanation as to WHY his bone marrow shut down.  I was hoping for some kind of timeline or treatment plan.  

We checked in promptly at 2:00 to the hematology/oncology outpatient clinic.  They printed an ID band and strapped it on his ankle, which is not standard procedure for an office visit.  they got his stats: Height, weight, blood pressure, temp., and showed us to an exam room.  The nurse, Michelle, told us they planned to do a Complete Blood Count (CBC) lab, and then they likely other other labs after that.  To avoid having to poke him repeatedly, they place an IV on every visit.  then they can draw blood as needed, and at the ned of the visit, use the same poke to infuse with blood products, antibiotics, chemo treatments or other things that are considered "normal' in the is office.  Seeing the other patients, many of whom were bald, was a bit sobering.  I don't think that the reality that I have one of "those kids" has really sunk in yet.  

Pokes and Blood Draws

Andrew cried when the IV team arrived to put it in, but remained very still and didn't need to be restrained or held down.  (Had this been Mark, who's 4 yrs old, that would be another matter...) They drew 3 syringes of blood and then transferred those into individual tubes for each of the over 19 specific lab tests they ordered.  Over the course of the visit, they came back in and withdrew 2 additional syringes.  I kept thinking to myself, "If his blood counts are so low, he won't have any left at the rate they're going through it!"

Genetic Counselors

Andrew settled down and they brought him some milk with a straw and he snuggled into Daddy's lap while the first set of specialists came in to talk to us: the genetic counselors. These two women were experts.  They explained that there are 4 disorders commonly know to cause Blood Marrow Failure Syndrome.  Troy asked if/how that was different than aplastic anemia and they said that in this case they could be used interchangeably.  Many of the labs they ordered will screen/test to see if Andrew has any of them.  If so, they would also test his siblings for the same condition.  They went into a lot of detail about how and why they cause problems like this and ultimately said that the best treatment for this type of disease is a bone marrow transplant.

They reiterated that siblings are typically the most likely to be a donor match. to get a better picture of the family health histories, they asked us for everything we know about our children, selves, and parents and any health problems. This whole process took over an hour of conversation.  (I'm leaving out a lot of tedious details.) But I came away from this conversation with a better understanding of the "matching" process and bone marrow transplants in general.

The Doctors explain Lab Results

The next people to come in were the Doctors. One was the fellow we had met on the day of Andrew's biopsy, the other was new to us.  After introductions all around, the first thing they told us were his results from the Bone Marrow Biopsy, and the CBC from an hour before. there wasn't anthill different than their initial diagnosis, however, the tests that were sent to another lab showed something disheartening.  When they analyzed all the cells, they looked specifically for immature cells that would ultimately mature into platelets, red and white blood cells. There were essentially none of these found. the lab report stated this: "Markedly Hypocellular Marrow (5%) with decreased trilineage hematopoiesis." They essentially called his marrow "empty" because normal for his age is 60-80%. 

The doctors also explained his CBC results, especially in comparison to his results from 6 days prior. His platelets level after receiving a an infusion from a donor were 40.000.  They were back down to 8,000 in the office, so they recommended getting him another transfusion at the end of the visit.  This helps descries the chance of him having a serious bleeding incident, since platelets help clot your blood.  his red blood cells (hemoglobin) had gone up from 7% to 9.2%, which is still lower than normal, but not low enough to warrant another red blood cell transfusion. 

Zero Immune System

Lastly, and most concerning where his neutrophils (ANC), which are the white blood cells responsible for fighting off infections.  Normal is 1.5. Thursday his were 1.2- low, but acceptable. Today they were 0.1.  And because there are not any of these immature white cells in his marrow, they said there is very little chance of seeing this number rebound. This has serious implications in day-to-day life.  The doctors explained that no only does this mean he can't fight off sickness and illness-type germs, his body isn't even able to maintain the balance of "healthy" bacteria and fungi that reside constantly in our mouth, on our skin and in our GI tract.  They prescribed 2 antibiotics and one antifungal medication to take daily that should help keep these in check.  (side note: One of these is taken 2x/day, and Andrew HATES the taste.  I have attempted 4 doses so far, each using a different technique, and only once did he not instantly spew it all out of his mouth and all over Troy and I with an emphatic "Yuck-eeee." Any medication administration suggestions are greatly appreciated.) 

One of them said, to prepare us for the inevitable, "He will likely be admitted to the hospital with an infection in the next 1-2 months while we are waiting for results.  *deep sigh*

They went on to explain all the many lab tests they were ordering, many of which were to test for conditions, other than inherited or genetic, that could explain the cause of his Bone Marrow Failure. Some include exposure to certain viruses. They ordered the test to determine his bone marrow/blood type.  This will identify what we are trying to match a sibling to.  I was shocked when the doctors said that we wouldn't really have the results to many of these for 2-4 weeks. That seems so long to wait when you just want to get your kid healthy now!

Platelet Transfusion

They said Andrew was likely to need transfusions every week, and they wanted us to come in weekly for the time being. They answered our questions, looked Andrew over and told us he was the cutest patient they'd seen all day, and by now it was after 4pm. (Maybe they say that to every parent.)and lastly, sent us for Andrew's platelet transfusion.  The office has an entire room with curtained off "cubicles" for patients who need infusions of some kind. There are 10+ cubicles.  And you get to keep your 2 year old there attached to an IV pole for the drip time, plus another 30 minutes of observation time to watch for a delayed reaction.  Andrew behaved so well for these past 3 hours, especially considering that he only got an abbreviated nap before we came.  This platelet transfusion followed the same protocols as the other 2 he'd received.  starting vitals, and then every 15 minutes until it finished.  Because platelets are thicker or stickier, they administer them at a faster rate.  So I was pleased to hear that it would take about 30 minutes compared to over 2 hours for the red blood cells. We looked at pictures on Dad's phone, then on my phone, then Andrew asked to read a book. The nurse looked for a book and could only find a Mickey Mouse coloring book.  There was no real plot and it didn't keep his interest. I was surprised when the nurse announced that he was done; I looked up at the bag of platelets hanging on the pole and it was still almost half full! I asked why they didn't give him the whole bag, and they answered that the volume is based on his weight, and an entire bag would be too many.  I thought to myself, "You could probably give him 2 full bags and he'd still have a lower platelet count than I have." I'm a loyal blood donor and it made me ache to see those blood products going unused. One of my children later commiserated, and I wholeheartedly agreed, "they should just split the blood into smaller bags and let the big people get 2 bags."  

As the 30 minute wait time counted down, in an effort to streamline things, I decided to head down to the pharmacy and pick up these new medications.  The anti fungal medicine needed pre-approval from insurance, so I only got the two antibiotics. Although I had planned ahead and las lasagna in the oven with a time bake set for the big kids, I was still anxious to get back home. It was approaching 5:30 and this pregnant lady was hungry. Also, Tim and Spencer's Wednesday night activity started at 6:00 tonight instead of the usual 7:00, so our babysitters were abandoning us.  Luckily, Troy's parents were happy un over and sty with the younger kids, and drop the big boys off at the activity. 

The visit made for a very long day, left us with a lot to think about and yet, still didn't give any kind of idea of what the next step is. I think I will be learning a lesson on waiting.  Even if all the stars align, and one of the other kids is a marrow donor match, the very soonest we could hope to do the transplant is September.  That seems like a long time to keep Andrew healthy.  And it means Baby Sister will arrive before it happens.  Fortunately, I am learning to trust God's timing and know that ultimately things will happen as they should.  Even if I don't like waiting.