I think I can finally start to put together the story of Carrie's journey toward a bone marrow transplant in 1997. I've tried to write this before but thought it was getting too technical and lengthy. Now I'll just link to terms and such instead of explaining them. I'd also like to say that hindsight is 20/20 so I'll quickly start in Sept of '96.
In Sept of '96 (she had just turned 2yo) we had a WIC appt in the beginning of the month. Carrie was required to get her iron and lead level tested for the year. When they drew a drop of blood from her finger and stuck it in the machine it came out that her iron was low. Her cousin had been tested just before her and also tested low. The nurse said that had happened a lot that day so we said it was probably the machine.
Jumping ahead to Thanksgiving of '96. Carrie had had typical fall colds and such. She also developed a HUGE lymph node/gland under one of her ears. It kept getting bigger and was hard. When I finally took her into the drs it was about the size of a walnut...it was abcessed. She was sent to a peds surgeon to have it lanced and drained. She had bloodwork before her surgery and nothing off was reported to us. For most of the winter she was a typical kid with typical winter illnesses.
In Feb of '97 we ALL got the flu. Carrie never seemed to recover fully after that. She would get better when on antibiotics but as soon as she was off she would get sick again (or so it seemed). She was fighting recurring ear infections, colds, fevers, her legs hurt. She was taking a lot of naps when she didn't before.
In March we were headed back to WIC. Because she had tested low at her last recertification, it was required she have her levels retested. This time her iron level was at a 9 when their allowable lowest was an 11. (none of my kids had ever tested under before) I told the dr at her next appointment for an ear infection a few days later. He put her on iron drops for a month. I never got her back in to get her ears rechecked until she was complaining of stomach pain on May 6th. I thought she had appendicitis. What she really had was pneumonia. I reminded the dr about the low iron level and the iron drops. He decided to draw her blood to see how the drops were working.
I got a phone call the next day from the peds office. I needed to take Carrie up to the University Hospital's pediatric oncology clinic. I froze where I stood when they said she was going to be seeing a Dr. Sw. I KNEW Dr Sw! He was the dr that took care of my niece who was diagnosed with leukemia (ALL) when she was 8! My heart sank into my stomach...what I'd been thinking in the back of my mind was really true.
We went up there. She was admitted with a red blood count of 6 (normal is 11+), double pneumonia, sinus infections in all her sinuses and 5th disease. We were told she had a rare bone marrow disease, Myelodysplastic Syndrome/Myelodysplasia (MDS), that is rarely seen in pediatric patients. (her dr said he'd be "lucky" if he saw it 3 times in his career...most reports claim there are less then 100 pediatric cases a year). It often and in Carrie's case was quickly proceeding to chemo resistant AML (Acute Myeloid Leukemia) He told us that her only option was a bone marrow transplant. Tom, the kids and I all had our blood tested to see if we were a match to her.
She stayed in the hospital for a few days and the night we were released we found out that our oldest, Drew (13yo at the time) and the baby Jake (8mo) were perfect matches!!!! The chance of finding a match was 25%, that we had TWO matches was a miracle! It was decided that Drew would be her donor and we made arrangements for Carrie and I to go 350miles from home to the Dana Farber Clinic and Boston's Children's Hospital's Bone marrow transplant floor.
Within a week all her blood counts were at
VERY bad levels
Red at 6 (normal is 11+)
Platlets at 9,000 (normal is 150, 000 - 400, 000)
White was 32,000 (normal is 4,000-17,000)
My parents took the school aged kids, SIL...D, took Luke who was 4 (so he wouldn't have to be home alone and my mom could have some down time) until after school got out. My other SIL...C, took Jake for most of the summer (he stayed with the rest of the kids for some weekends). We arrived in Boston and were admitted for the transplant on May 27th. The actually tranplant didn't start until almost 2wks later because they decided she was too sick to start so they gave her a mini chemo treatment and mega doses of antibiotics. (her White count had doubled to 64,000 and the percentage of immature/cancerous cells had increased)
When we got to Boston we were told that she probably would have only survived
a little while longer without being diagnosed and being treated. They said if we opted to NOT go through with the transplant...we could "take her home and enjoy her for a few weeks". Some of her nurses named her the Golden Child because according to statistics she shouldn't have made it TO transplant much less get through it so well!!! And fly through it she did. There were a few scary times (another post/book in itself) but relatively she flew through the transplant process.
We were in Boston for 15wks. They wanted us to stay longer but took pity on us and let us go home in time for Carrie's 3rd birthday. (they were also confident in her medical care at the university clinic). She now has TWO birthdays....Sept 7th, the day she was born and June 20th, the day she was RE-born, thanks to Drew.
Carrie has done well since her transplant. She was on immune suppressing drugs for a year which meant she was on restrictions to the public for that amount of time too. She's had to have all her immunizations redone (some had to be re-redone as they didn't provide immunity after getting them post transplant). She is and will be dealing with long term problems (like cataracts) and risks (like secondary cancer) but on the radar they are small blips. She has a check-up every 6mos. She will never be considered cured but the further away from transplant we go, the less likely she'll relapse. (and she's over 8yrs out of transplant now!)
The timing and how things came about still amazes me! (we always seemed to be one step ahead of it) I had the WIC director crying (I was crying too) when I was telling her Carrie's story and how I give WIC credit for saving her life. If it wasn't for them we would have NEVER looked at her blood and seen she was sick until it was probably too late.
To show how easily this could have been different....
We became friends with another family. Who's 2.5 yo (birthday was two months
after Carrie's) had the same disease, the mother was pg with baby #8 (I had 8
at the time), and they also had 2 perfect marrow matches for him. He was not as sick as Carrie when the transplant started but ended up having a tough time growing his sister's marrow. He ended up relapsing within 6mos and passed away in Feb of '99. I think of them often as I watch Carrie growing up.