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.  

How We Got the Diagnosis

 The call from Primary Children's Hospital was specifically from the Hematology Oncology doctor on call. She reviewed what the pediatrician had told us, and made all the logistical arrangements to have his bone marrow biopsy for the following day.  We expressed our preference to sleep the night in our own beds and arrive early Friday morning. She agreed and we hung up.  Immediately, the phone rang again. She realized that because his platelet levels were SO low that they wouldn't be able to do the procedure until he had received an infusion and gotten his level above 40,000. So, we needed to arrive that evening instead. We hung up the second time a little disappointed; knowing that at least one of us would be very tired for the busy day ahead.

Troy has always been able to tolerate sleep deprivation better than I can.  He also has this magical ability to soothe and calm people.  He was the obvious choice to be the hospital chaperone.  After completing our traditional bedtime scriptures and prayer together as a family, he took a quick shower and packed a bag to take to the hospital.  He left home at about 8:45pm.

The Non-Slumber Party

They checked in at the ER, who was expecting them, did a quick Covid test and then went to the security desk to get a parent/visitor security badge. This badge grants access to Andrew's room in the Hematology, Oncology, Transplant unit on the 4th floor.  We were a little discouraged when we noticed  that the expiration date on the badge was a full month in the future.  They got settled in the room and met the nurse.  

Back at home, I had gotten the kids settles in their beds, and answered as many questions as I had answers to. I wanted them to feel like they had an idea of what was going on.  The oldest two were willing to take charge and be responsible for the younger three for the following day. I decided to distract my self by preparing my bag for the following day.  Because I have had long-term hospital stays with him, and other children, I knew a bit of what to pack in my own bag to take to the hospital: a 2 day supply of all my medications and medical supplies, shelf-stable snacks to eat in place of real meals, my wallet, a change of clothes, basic toiletries, chewing gum, thank you notes and pens, pajamas, a phone charger. I also packed Andrew’s favorite blanket and a change of clothes and jammies for him. 

After packing, my mind was still buzzing with adrenaline, so I texted Troy to see how things were going at the hospital. They had been there a few hours by now.  He decided to FaceTime rather than text with a toddler on his lap. Their faces appeared on the screen and I instantly felt calmer. Andrew was chipper and cheerful, despite the late hour.  He typically falls asleep by 8:30 and it was approaching 11:00pm.  He was eating a string cheese and goldfish crackers, and drinking blue PowerAid. Troy said they were working on matching and cross checking his blood type for the platelet infusion.  We could both tell he was getting sleepy, but there is no rushing things at he hospital.  

We knew we wanted to get as much food in his tummy, as close to midnight as possible, because after that, it was just clear liquids before the Bone Marrow Biopsy the next day.  Gratefully, they put them to sleep for the procedure, which we had heard was very painful.  Most adults have to tough it out.  

By the time they were ready to insert his IV, around 1:00 am, Andrew had fallen asleep, and it was quite a rude awakening.  He did not like it one bit, and repeatedly asked to "take it out" or "get it off." It took Troy over 30 minutes to get him to stop crying, and settled enough to doze off again.  

By 1:30 am, they had finally gotten the platelets to his room.  When they infuse blood products, they start at a slow rate, and watch for signs of stress or reaction.  He had his vitals checked every 15 minutes for the first hour, then they speed up the rate a little and check every 30 minutes until the bag is empty.  Andrew finished the platelet transfusion at 4am and was exhausted.  The only real sleep either of them got was from 4am, till about 6:30. At home, I had trouble falling asleep, too; all sorts of scenarios kept playing through my thoughts and I missed having my man next to me.

When the alarm went off at 6am I was instantly awake and somewhat alarmed.  My house is never silent when I wake up.  Our home is filled with early risers and I usually hear voices, music, showers, or food prep sounds.  Today was silent.  I hobbled out to the kitchen in my bare feet. (I'm still healing from a broken metatarsal in my right foot...)  Empty.  Panic.  I limp to the stairs and climb as fast as the lame foot allows.  As I look from room to room, all 5 children are in their beds, fast asleep.  This must be some kind of Guiness record.  Instantly, I regretted waking up early, since I am still sleepy from the restless night before. But I know I won't be able to fall back to sleep so I hop in the shower and get ready for the day, donning my clunky walking boot.

By 7:00am, I am ready to tackle the day.  The kids are all awake and the house is buzzing as usual. I make a To-Do list for the kids and hope some of it happens while I'm away. I arrive at the hospital at about 7:30 and collect my parent badge and make my way to Andrew’s room.  

The first thing Andrew says to me, pointing to the IV in his hand is, "take it off." Then asks for a cup and a drink, which he can't have until after his procedure, and lastly, asks to go home.  Sheesh, The Genie arrives, and isn't able to grant any of the three impossible wishes.  It's a helpless feeling. 

Meeting the Doctors

At about 9:00am, Andrew's team of doctors arrives to do their rounds.  This team includes the attending, or senior doctor, a fellow, and two doctors about to finish their second year of residency. They introduce themselves, and ask what we understand so far about Andrew's condition. We answer that his blood levels are low, and this means something is wrong with his marrow, warranting the biopsy for definitive answers. They confirm this and give more details about the bone marrow biopsy procedure itself as well as what they will look at from that sample.  They will be able to give us the initial report about 3 hours after the biopsy is done.  

Then we learn that they will inject a large needle into the hip cavity and aspirate the liquid part of the bone marrow, and then remove a small piece of the hip bone to look at another type of marrow there.  They will look at the "density" of the cells; see if there are any abnormal cells. They will also send a sample to another local lab to look for other things that will give insight to the types of cells they find.  That test is called a flow. If it's leukemia, this pinpoints the type of cancer, etc. They spent about 30 minutes with us, answering questions, giving information. Overall, I was very impressed.  They all seemed very capable, knowledgeable and when they left, I felt reassured that we were in very good hands.  

We knew his appointment time for the biopsy was 10:30 and the nurse told us we needed to report downstairs at 10:00. Andrew needed a distraction, so we went for a walk. The hospital has cars, wagons, bikes, trikes, and other active, kid-friendly modes of transportation.  We walked downstairs.  Troy held his hand and I maneuvered the IV pole. It was difficult to keep the tubing from dragging on the floor, or to prevent it from pulling on his hand when he spontaneously burst ahead!  He chose a wagon for this outing, and we went on a stroll inside and outside, which was a bit of a process; we were glad to have two people. 

The Bone Marrow Biopsy

We arrived back at his room with just enough time to check his vitals and ride in the wagon down to the Children's Procedure Center. There were met the anesthesiologist and the doctor who would perform the biopsy. She warned that there was a possibility that if the first hip didn't have enough bone marrow that she might need to do another puncture on the other hip.  We consented, since we needed this test to figure out his problem. We passed the time reading books until the anesthesiologist took the wagon handle and rolled him toward the sterile room.  When Andrew realized we weren't going with him, he cried, as we waved, then turned and walked the other direction, back to his room to await the call that he was in recovery.  

Less than 30 minutes later, the nurse told us he was ready and rolled his giant hospital bed down to the Children's Procedure Center with us to pick up our boy.  We heard him before we saw him.  He was not happy to wake up amidst a bunch of strangers.  His recovery room nurse was very nice, but he only wanted Mom and Dad. Once he was in dad's arms, and the nurse gave him a sucker and a tennis ball, he was happy again. We walked back to his room carrying him, and joked with his nurse that we were just giving her a workout pushing that unwieldy bed through the maze of hallways that make up the hospital. 

Now the waiting game began. He no longer needed to be connected to the IV, so that made getting around much easier.  He was starving at this point, so his nurse brought him lunch and after eating, he was very energetic and ready to roll.  On a normal day, nap time follows lunch time, but even after dimming the lights, he didn't want to rest. Even the anesthesia didn't seem to make him sleepy, so we decided to go for another adventure.  We knew the results would be a few hours, minimum.  Feeling much freer without the IV pole trailing behind, we let Andrew choose a strider bike and awesome dinosaur helmet to ride all over the hospital.  We walked and walked and rode and rode for literally hours. I thought Andrew might be tired by this point. After all, he only had about 3 hours sleep and a lot of activity.  He wasn't acting tired.  

The Results and Diagnosis

Around 2:00pm, the one of the residents came to our room and said she'd looked at the biopsies under the microscope and had some preliminary information to share.  She described the bone marrow cells as "empty." With leukemia, the cancer cells tend to come in and crowd the marrow cells. They observed the opposite in Andrew.  He was just "missing" bone marrow. Which explains why his platelets, red blood cells and white blood cell counts were SO low.  The doctor felt confident enough in this initial look to tell us that leukemia was likely not the diagnoses, rather it is a condition called Aplastic Anemia.  Something that we hadn't even heard of until the night before.  Leukemia and Cancer are both scary words, but as we learn more and more about aplastic anemia, we are finding out that it is much more rare and not as straightforward to treat. 

They told us that because Andrew was feeling and looking so good that they were comfortable sending him home with some explicit instructions to bring him immediately to the ER if he developed a fever, or bled for longer than 10 minutes.  With no white blood cells, a fever can be serious, and they begin antibiotic treatments right away.  With no platelets, his blood isn't able to clot, and even a nosebleed can be serious.  They also warned us to avoid head impacts at all costs.  A bump to the head could cause bleeding in the brain, which can also be very serious.  She asked if we'd be interested in giving Andrew a red blood cell infusion before they discharged us later that evening.  We agreed that if were already sitting at the hospital, and Andrew already had an IV in his hand, that we may as well do it today. She ordered the blood and left us to wait some more.

Andrew isn't the type to sit, so we decided to go for another walk and asked the nurse to call our cell phones if the blood arrived. Andrew picked a Big Wheel style trike this time, but had a very difficult time steering and reaching the pedals.  After one lap down and back in the main hallway, we traded it for a Flintstone-style car he could push with his feet.  Finally, after what seemed like miles of wandering, but was really only about an hour, my blood sugar started to crash and we headed back to the hospital room to get some fruit snacks, granola bars and put my broken foot up to rest.

We were surprised that the blood wasn’t ready yet, and our helpful nurse called down to the blood back to find out the status. They gave her a hard time, and we decided to settle in for a wait and see if maybe Andrew would nap now. While we were in the room, the attending doctor came in, and sat down and took of her mask.  This gesture went a long way, especially in the hype surrounding Covid. It made me feel more connected with her as she reiterated what the other doctors had told us and answered questions and gave a sense of genuine concern.  She told us a little about bone marrow transplants.  I asked what ages a sibling needed to be to be eligible as a donor.  She shocked me by saying that if this unborn sister was a match, we could even use the umbilical cord blood to harvest marrow cells from!  There is essentially no age limit.  Because he has 6 siblings, and siblings are the most likely/ideal match, Andrew got pretty lucky in that department!! 

As this sweet, grandmotherly type doctor was explaining all this to us, her voice and calm demeanor lulled Andrew to sleep in Troy's arms. Finally!  She told us about some of the causes that cause the body's bone marrow to shut down. Sometimes it is virus induced.  Sometimes it is more of a genetic cause. Sometimes the body's own immune system causes it. She finished by saying that almost half the time it is idiopathic, which is the medical term for "we have no idea what caused it." Depending on the cause, different treatments are recommended.  The doctors in the hospital briefly touched on some of the possible treatments, but decided that they would prefer to see us the following Wednesday (five days later) to run more specific tests to help pinpoint the cause and discuss this further. I felt very reassured after she left our room. 

Troy laid our sleeping boy on the bed and he didn’t stir. We sat in the comfortable quiet of each other’s company. Then I got out my thanks you notes and Troy got out his iPad to check emails and things. There are often quiet moments at the hospital, interspersed with the busy times.  The nurse sneaked in about half and hour later and announced that the blood was ready! She estimated about 2 hours to infuse the whole bag.  She’d have to take his vitals every 15 minutes for the first hour and then twice in the second hour, to monitor for complications.  Fortunately, he slept through the blood pressures, temperature checks and pulse rate monitoring.  

We called home and asked the older kids to find his Strider and hide it in the bonus room.  This beloved bike is the cause of a majority of his bumps, scrapes and impacts. We also told them when we estimated we’d arrive home.  Overall, things ran smoothly while we were away.  A kind friend delivered dinner to them, which was much appreciated, and very tasty.  We enjoyed a helping when we arrive home later that night. 

The nurses work 12 hour shifts and I know our nurse was hoping to get the blood finished and Andrew discharged before her shift ended at 7pm.  True to her word, we were all finished up and discharged by 6:30.  I felt so grateful to be able to bring Andrew home that night and enjoy a little more time all together as a family.  

How We Learned Something was Wrong

 Around May 21, 20121, I went to change Andrew into his jammies at bedtime and was shocked to see his legs, from ankle to knee coved in large black bruises. I tried to think of what he could have done to inflict such ugly, dark marks and came up with nothing out of the ordinary.  He’s an active, energetic 2 year-old who loves to play and play hard. He loves to climb and jump.  He has strider bike skills worth bragging about, and can hard core crash with the best of them.  I decided it must have been an eventful day, Troy and the other kids couldn’t think of any excessively brutal falls he had taken, so we decided to watch and wait over the weekend. 

On Monday, May 24, I had plans to take a little trip by myself to enjoy a little R&R, and wasn’t overly concerned with the bruises. Boys will be boys, right? The family dropped me off in Park City and we decided to eat there and swim in the fancy pool for our Family Home Evening activity. I made homemade Oreos, a family favorite for the treat, and we had a nice evening together. 

When I returned home on Thursday, I noticed two bruises on each side of his forehead, with explanations of “typical” bonks to explain them.  I was surprised by the dark color, but wasn’t overly worried. We were looking forward to Memorial Day, Spencer’s birthday, and Our 19th Wedding anniversary.  A few bruises were no big deal. On Tuesday, June 1, I had an early ultrasound and OB visit, and while I was out, Troy took Mark and Andrew on a little bike ride.  Andrew donned his shark helmet and mounted his Strider bike, and had his first crash in front of the next-door neighbor’s driveway. He hit a bump, cranked the handlebars sideways and landed on top of his bike. He cheerfully hopped back up and continued on his way; one fall wasn’t going to keep this kid from exploring the world! 

When I returned from my appointment, the first thing I noticed was a scrape on his neck, with a bruise already forming below it.  A few hours later when I changed his diaper, there was an ugly purple bruise on his hip as well, both results of the strider crash.  At this point, I know something was wrong, so I called and made an appointment with his pediatrician for Wednesday, June 2, at the same time Spencer had his well child checkup: 3:30pm, which also happened to be the last day of school for the year- Yippee!

 In the office the following day, the doctor examined his bruises, listened to my explanations of how I couldn’t even think of what had caused the bruises all over his legs. (These were almost 2 weeks old, and had not hardly lightened in color, or morphed into the rainbow of blue, green and yellow, that our run-of-the-mill bruises typically produce.) I explained about the bike crash and the resulting injuries. I know the doctor recognized the red flags of what this could mean because he ordered a lot of blood tests, but simply told me that the bruises were most likely because of low platelet levels. He gave me enough information to convey the importance of preventing any head impacts, because if he was correct, and his platelet levels were low, it could be very difficult to stop the bleeding that could easily follow such a hit. Thinking out loud, I asked if he was working tomorrow to give me the results.  He replied, “Oh, I ordered these STAT, and I’ll call you tonight.” Hmmmm, I didn’t realize this was urgent.  We went downstairs to the lab at about 4:30 and Andrew sat quietly on my lap and simply said “Ow!” when they poked him with the little butterfly needle. After a few tears and seven vials of blood later, he and I cheerfully made our way to the car, with a sucker in his hand. 

We returned to our busy home and all ate dinner together, with the STAT status of the lab order haunting my thoughts as we tidied up the dishes. In curiosity, I logged into our health account and was able to tell something was wacky with the lab results, but I don’t have the expertise to put it all together and figure out what it all meant. I knew the doctor would call as he’d promised. 

At about 7:00pm, Andrew’s pediatrician phoned and simply said, “Nicole, can I stop by your house? This is a conversation we need to have in person.” My heart sank. Luckily the office was just a block down the street, but I was so impressed with his gracious offer to make a house call.  We did a quick “shove-all-the-visible-mess-out-of-sight” tidy and anxiously awaited his arrival.  

I didn’t envy his job when he arrived. His face was grim.  He sat down and told us that his bloodwork showed two likely diagnoses: leukemia, or aplastic anemia.  To gain a definitive diagnosis, we would need to perform a bone marrow biopsy the following day. He called Primary Children’s hospital before he arrived at our house and let us know they would contact us soon to arrange the details. Before he left, he recommended that we give him a blessing and lots of hugs.  Knowing that our go-to person, Grandpa Brad, was our of town for our niece’s graduation, I asked if he would be willing to assist in doing so. We invited all the kids into the office and our beloved doctor humbly and graciously accepted the invitation.  He anointed Andrew with consecrated oil and Troy followed by sealing the anointing and giving a brief, but tender blessing. The room was filled with love when we all said “Amen.” He hugged Andrew before he left; heading back home to his own family after a long day of work and going above and beyond the call of duty.

We explained to Andrew’s 5 older siblings the basics of what we had just learned, and before we had completed the conversation, the phone rang, showing “Primary Children’s Hospital” on the caller ID.  On the other line, was the on-call doctor in the Hematology Oncology department with a few more details and a request to have Andrew come in that evening.  He needed an infusion of platelets from a blood donor before he could undergo the bone marrow biopsy the following day. His platelet levels were at 8,000. Normal is over 150,000.  This was serious. 

We began our usual bedtime routine after we hung up the phone, and as we read scriptures together  that night, Little Lizzy read the following verse in section 61of the Doctrine & Covenants, verse 36, “And now, verily I say unto you, and what I say unto one I say unto all, be of good cheer, little children; for I am in your midst, and I have not forsaken you;” I immediately felt such comfort as the Holy Ghost whispered to my heart that I wasn’t forgotten, and to keep my chin up and be cheerful. We knelt as a family and prayed; uncertain of what the future held, but filled with faith. Then Troy packed an overnight bag and took Andrew to the hospital, and I got the kids into bed. They asked lots of questions and I gave as many answers as I had. It was late before they were all settled in for the night. It was much later before I was able to fall asleep.