Grab a coffee – this is a long one.
It’s a bit of a technical update but Rich & I want to share the details of the transplant process. We met with Dr. Leung (Head of STJ transplant) yesterday to discuss “the plan”, Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation. It was a difficult meeting, emotionally. As a parent it’s so hard to hear the potential side effects of the new chemotherapies, radiation and engraftment process. Survival was mostly discussed in terms of days – surviving the pre-transplant conditioning, surviving the engraftment process, surviving the 100 days of post-transplant. They will be monitoring for toxicity/organ failure, infection, rejection of stem cells and, Graft vs. Host Disease – all potentially fatal. Long-term survival milestones were also discussed (below). While this process is scary, it’s John’s best chance at a cure. I left the meeting shaken, heartbroken and clinging to scraps of hope.
We are still focusing all of our prayers on John’s Remission. Starting the transplant process MRD Negative exponentially increases the odds that the transplant will cure John. After John recovers from ReIntensification (about another 3 weeks) Dr. Pui will perform another bone marrow aspirate. If it’s negative (0.00% cancer) we start the pre-transplant work-ups (CTs, X-rays, MRIs, Ultrasounds, Dental visits, Labs etc...). He would also have surgery to remove his subcutaneous port and insert a different type of central line called a Hickman. If it’s not negative, we need to regroup. So, please continue praying for MRD Negative!
The transplant process will consist of a few phases: conditioning, post-transplant engraftment and 100 days of isolation. About half of those days will be spent in the Chili’s Care Center/Transplant floor on the STJ campus. The other half will hopefully take place back in the comforts of our home-away-from-home, the Target House II.
Conditioning: John will be on an intensive 9-day chemotherapy and radiation regimen leading up to the actual transplant. This process will completely wipe out John’s bone marrow. (negative days representing days leading up to transplant, Day 0 being the day of the first transplant, positive days being the days post transplant #1)
Day -9 Total Lymphoid & Spleen Radiation
Day -8 Total Lymphoid & Spleen Radiation, Chemotherapy
Day -7 Total Lymphoid & Spleen Radiation, Chemotherapy
Day -6 Chemotherapy
Day -5 Chemotherapy
Day -4 Chemotherapy
Day -3 Chemotherapy
Day -2 Chemotherapy
Day -1 Chemotherapy
Day 0 Stem Cell Transplant #1
Day +1 Stem Cell Transplant #2
Day +6 NK Cell Transplant
Engraftment: I was told that John would be the sickest during this phase. His body will be hard at work trying to accept the Stem Cell/Natural Killer Cell infusions.
+11 By day plus eleven they need to see some type of recovery. His body needs to show signs of engraftment!!!!
+12 through +30 They will continue to monitor engraftment process. They will measure his Chimerism, engraftment analysis (what % he is of donor cells). Dr. Leung said there is only one acceptable Chimerism at St. Jude and that’s 100%! In this case even 99% is a failing grade. If he is not 100% he will receive “boosts” of my donor cells. Infection control will also continue to be a huge priority.
100 days of Isololation Continue: During this time it’s critical John continue to remain isolated (only leaving the Target House for Clinic visits). He will have virtually no immune system. He will have the support of IV antibiotics and antifungals to protect him but, exposure to a virus or resistant bacteria would be life threatening.
+30(ish) through +100(ish) Continue to monitor Chimerism on an outpatient basis.
+100(ish) If he is 100% donor and his immune system has begun to recover he will be allowed to come back to Charlotte. He would need to be monitored at Levine and return to STJ on a monthly basis for MRD and Chimerism testing.
Long Term Goals: The important milestones for transplant patients are at 1 year and 2 year follow-ups!
One-year mark – Dr. Leung said if John remains cancer free at this point we should throw a party
Two-year mark – Dr. Leung said if John is cancer free at this appointment we should move on ….
Donor Process: Rich & I are both a haploid match (1/2 match). But, after Dr. Leung looked at my genetic makeup he feels my DNA is better at fighting Leukemia. (fyi - every day we have pre-cancerous and cancerous cells in our bodies but our immune system kills these cells – this is not the case for John) If my Stem Cells and Natural Killers cells fully engraft Dr. Leung believes they will be able to fight off any residual Leukemia in John’s body. This is a basic description - the more scientific discussion we had with Leung was much more complex and incredibly fascinating. During John’s pre-transplant conditioning process (days -5 through +1) I will be taking daily injections of G-CSF, a blood growth factor & stem cell mobilizer, to increase the number of stem cells in my blood so more cells can be collected for John’s transplant. The stem collection, done by Apheresis (6-8 hour collection), will take place at STJ on day -1 (to be used on day 0) and on day 0 (to be used on day +1). The NK Cell collection will take place on day +5 (to be used on day +6). The cells need a day to be filtered and processed before John’s receives them – to ensure the best possibility of engraftment. There is a bit of a catch with the donor process, I will probably be unable to be at John's bedside during this time. There are some mild to severe side effects. So, Rich will most likely need to hunker down with John and I’ll need to hunker down at the Target House and create lots of stem cells.
On a side note, initially we were praying that John’s sister, Isabella, would be a perfect match. After we were told Isabella was not the match we learned that the Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation was a better option BUT had Bella been a match, the FDA would have insisted we use her as a donor. I was always under the impression that having a perfectly matched sibling would be ideal. It turns out that, that path would have involved a more toxic conditioning phase and full body radiation. The Haploid transplant is less toxic and includes only Lymphoid/Spleen radiation. So it turned out to be a blessing that she wasn’t a match.
How’s John? His counts have plummeted. He received platelets yesterday and he will most likely need some type of blood product transfusion every other day until his body recovers from his high-dose chemotherapy. His stomach is still having some issues so, he is still on round the clock Morphine. He is spending his time watching TV and building some of the awesome Lego sets that have been sent to him!!! THANK YOU SO MUCH for bringing a smile to his sweet face.
What is he doing about school? He is enrolled at the STJ School. Charlotte Prep will be working closely with his teacher here at STJ, helping him keep up with his classmates. CPS has been amazing. We are blessed to be part of such a loving and compassionate community! My goal for John, academically, is to have him graduate 8th grade with his peers on June 2nd! Dreaming of that moment gives me chills … Perseverance … Unstoppable Determination!
You all have asked “Do we need anything”?
*John is loving his Lego sets and iTunes giftcards! Thank you for visiting his Amazon Wish List and sending those wish list items to him. http://amzn.com/w/24WYP211BEIRB We appreciate it!
*Since we can’t have meals sent here people have asked what they can do for us - we would appreciate giftcards to Whole Foods, Fresh Market or Starbucks :) It makes mealtime/snacktime easy for Rich, Bella and me to get their prepared meals.
Please consider: joining the bone marrow registry at bethematch.org, donating life-saving blood products at your local blood bank, becoming at St. Jude partner in Hope www.stjude.org/partnerinhope and/or donating to our annual St. Jude event www.stjude.org/eveningofhope (website will be updated soon)!
Thank you for your continued prayers, love, and support!