This is what I wrote 1095 days ago: Doing well. We’re on day -4. Four more days to reach DAY ZERO. Day Zero is the day that stem cells are infused through the central venous line. He will most likely receive the cells between early afternoon and night of Friday Oct. 29th. His ANC today…
Stem Cell Transplant
1095 days ago
Doing well. Vamos Andy! Vamos Andy! We’re on day -5. Five more days until Andy receives Sofia’s cells. Andy’s weight today 17.2 kg. Still constipated, we switched to a new medication, I hope this one helps. Yesterday I asked Andy why did he think he was not going to the bathroom and he told me,…
1095 days ago
This is what I wrote 1095 days ago: Doing well. We’re on day -6. Six days left until Andy receives Sofia’s cells. Andy’s weight today was 17.3 kg. He’s still constipated, we havent seen any stool in 5 days, he got two more doses of Miralax (website). He’s still drinking his Pediatric EO28 Formula…
1095 days ago / Day -8
Doing well. We’re on day -8. Clinical Assistant came into the room at 8:00 am to get Andy’s weight (16.9 kg) and vital signs. Andy went back to sleep. We’re signed up with Father Robert to receive communion, so at around 9:00 am a Chaplain came into the room, we held hands, she…
1095 days ago / Day -10
This is what I wrote 1095 days ago: Doing well. This update comes when Andy has received 3 doses of chemo out of 20 (16 of busulfan and 4 of the other) according to the original stem cell transplant plan. He will receive 4 days of chemo of one type, then one day of rest,…
Conner needs platelets and the hospital doesn’t have any to give.
Conner’s Mom: Conner needs platelets this morning and the hospital doesn’t have any to give. We are hoping that they will have some by this afternoon. If you are able, no matter where you live, no matter what your blood type, please consider contacting the Red Cross in your area to find out where you…
NEJM article about the history of bone marrow transplants
Fifty thousand transplants last year worldwide. First transplant fifty years ago. Hematopoietic-Cell Transplantation at 50 Frederick R. Appelbaum, M.D. September 12, 2007, marked the 50th anniversary of E. Donnall (Don) Thomas’s initial report of a radical new approach to cancer treatment: radiation and chemotherapy followed by the intravenous…
The first ever webinar about NEMO
Dr. Jordan Orange is the first Immunologist worldwide to give a webinar (definition via Wikipedia) to a primary immune deficiency patient group. He’s also a pioneer regarding primary immune deficiency research (he diagnosed my son Andy). His webinar included NEMO pathway descriptions, a map of NEMO mutations, ectodermal dysplasia and GI issues with NEMO. The webinar lasted for 1 hour 15 minutes and…
“BMTs suck eggs, but it will be worth it… I guess.”
Conner Smith is at day 21 post transplant, he is 13 years 3 months old and he had NEMO deficiency. This from his parents blog: This morning Conner said, “BMTs suck eggs, but it will be worth it… I guess.” Needless to say, Conner isn’t feeling like his normal perky self. He had a very rough…
Conner is officially engrafted!
This from Conners parents: UPDATE: WE JUST RECEIVED WORD THAT CONNER IS 100 PERCENT ENGRAFTED!!!! ALL OF THE CELLS WORKING SO HARD ARE DORY’S AND IF HE STAYS HEALTHY AND WITH A LITTLE GOOD LUCK HIS TRANSPLANT WILL BE A SUCCESS! CONNER IS OFFICIALLY CURED OF HIS NEMO DEFICIENCY! …