Brett's Bunch
12/13/13 - Brett has been officially diagnosed with AML leukemia with a gene mutation called FLT-3. This is a very rare version, for only 500 kids/adolescents get AML in the U.S. per year and only 50 get AML FLT-3. The only way to "cure" it is to go through three rounds of chemo that includes a new trial drug and follow this up with a bone marrow transplant. Brett has a long road ahead of him, as does our family. Please keep us in your thoughts and prayers as we navigate this new terrain and new terminology we wish we had never learned.
4/11/14 - Brett came into Roswell and begins his Bone Marrow Transplant therapy. His donor is unrelated, female, 34 years old, has two children and is O+. His BMT was on April 25, 2014.
Brett had been having leg pains for about 6 months. He had been sick several times since school started, including pneumonia.
He had just started kindergarten, so we thought nothing of it.
11/25 - 11/26 - he was running a fever and throwing up.
11/27 - 11/29 - he was fine while we were in Canada at Great Wolf Lodge.
11/30 - running fever/throwing up
12/1 - 12/2 - fine
12/3 - 12/7 - fever/lethargic/throwing up; thought it was a virus going around, since antibiotics didn't cure it.
12/8 - fine sent back to school on 12/9
12/10 - nurse had Brett pick him up at school with fever.
I was at pediatricians office for Zoe.
Spoke to ped and she said they needed to see him.
12/11 - Brett took him to the pediatrician. I asked him to get a blood test done.
So glad I did. The pediatrician was crying when he was telling Brett about the results.
He insisted we have an ambulance take him up here. Brett denied it and came home.
I had us packed and ready to go and we creeped our way up to Buffalo and the rest is one big whirlwind I wouldn't wish on my worst enemy, if I had one.
We arrived at Children's - they took us right in and put him in the ICU.
There was no question that he had leukemia. The question was, 'which one?'
There was already a plan in place for how they were going to proceed to find out and everyone was very thorough and professional.
His first twenty-four hours were brutal on him.
He went through so much and I felt completely helpless and useless.
It was like having him in the NICU all over again. But worse.
He entered the ER with WBC of 340, Hemoglobin at 4 and Platelets at 135. He was transferred to PICU (Bed 208) that night.
A - Intubated for procedure/airway protection and pain
B - Vasa cath put in pharesis
C - Attempted to pharesis @2:00am on 12/12 but not successful because of low Hemoglobin
D - Transfused slowly to avoid heart overload - he came in with a heart murmur, since his blood was so low.
Thursday December 12th at Children's Hospital at Buffalo PICU 208
1) Finally able to pharesis @12pm (held up due to line issues and complicated due to anemia)
2) Pharesis done by 2:30pm - during that time Lumbar Puncture and Intrathecal Spinal done.
CSF obtained and sent to lab.
Intrathecal cytarabine (chemo) given without issue.
Unable to aspirate (pull) so only small amount for slide of the bone marrow biopsy obtained. Tolerated procedure well.
3) Flow cytometry on perpheral blood sent in morning confirmed AML. Waiting for cytogentic, FLT-3 testing and biopsy of bone marrow.
4) 6-8pm Chemotherapy orders written but not started due to PICU questions. PICU held chemo due to elevated white cell count.
Called Dr. Bambach --> urged to give to decrease WBC (had gone up from 100 after Pharesis to 140)
So, given at 2:00am on 12/13 (DAY 1!): Cytarabine Day 1-10, Danurubicin Day 1, 3, 5, and Etoposide Day 1-5.
Headquarters
1247 Cassadaga Road
South Dayton, NY 14138
Roswell Park Cancer Institute
Elm and Carlton, 6 North
Buffalo, NY 14263

OUR BRANCHES
Brett's Story
