It has been four weeks since our last update. I’m writing to share with you that which should be documented during Hillary’s journey with Aplastic Anemia (AA) and Paroxysmal Nocturnal Hemoglobinuria (PNH).
We thought choosing between an upfront bone marrow transplant (BMT) and immunosuppressive therapy (IST) was the most impossible choice we’d have to make as parents. Turns out choosing to vaccinate Hillary for COVID-19 at this stage in her recovery was difficult also.
Hillary has two globally recognized, idiopathic, rare disorders and we just can’t ignore that for a moment. Since these disorders are not well-understood, we’ve always taken the most conservative approach possible when considering the terms for Hillary’s care.
At our last CHEO virtual app, Hillary asked if her low neutrophils might affect the way her body produces antibodies post-vaccine. Her doc said it’s all about the lymphocytes and she’s got the right amount of those. 😉
We called Pfizer to ask for any research studies for Hillary’s rare demographic. They surprisingly called back (in person) the same day with the “no sorry” we were fully expecting.
The Aplastic Anemia and MDS International Foundation (AAMDS) recently published their Guidance for Bone Marrow Failure Patients for Protection Against COVID reporting that a small number of PNH patients are experiencing hemolysis after vaccination. We were initially concerned about her platelets dropping, not necessarily her hemoglobin, so these findings had us concerned.
Since we sought second and third medical opinions at diagnosis to determine her first-line treatment path (IST), we were encouraged by Hillary’s lead hematologist at CHEO to consult these same experts again.
Dr. Michel Duvall of St. Justine’s Hospital in Montreal responded same-day to our inquiry. He recommended Hillary should be monitored closely for hemolysis, which would happen quickly after vaccination, if at all. This would be assuming her clone was much higher, like 80%.
Hillary’s PNH clone grew from 3% to 5% in her first year and her last diagnostic was May 2020. Regrettably, Hillary was not retested for PNH to help us monitor the clonal evolution. I know a little girl in Atalanta whose PNH clone is 96%. I do believe PNH is coming for Hillary.
Dr. Yigal Dror of SickKids in Toronto is the foremost specialist in AA, PNH and MDS in Canada. He manages THE database that includes real-time data for all registered patients — Hillary included. We asked him for help. If kids’ levels are dropping all over the country post-vaccine, we’d really benefit from knowing. We can help keep Hillary out of the hospital if we all work together. Dr. Dror is on a well-deserved vacation. Despite this, his office responded same-day also. While we must wait to hear whether Dr. Dror has viable research he can share with us, we already know what his response will be.
Hillary needs this vaccine.
Yes, it may affect her recovery and she may need a bone marrow transplant. Yes, there are still questions about vaccine efficacy with emerging variants. But, if Hillary doesn’t get this shot and gets sick from ANY other virus, fungus, or bacteria, she’ll need whatever COVID antibodies she can mount to help protect her in the hospital as her neutrophils tank and the coronavirus mutates.
Alyssa made a great point yesterday. She noted astutely that Hillary has had all of her other childhood vaccinations and has retained an appropriate antibody response — as evidenced by her recent antibody test to confirm as such — so that should be what happens here with the COVID shot.
The most difficult input we’ve had to digest has been the divided collective response from the numerous private social media support groups for AA and PNH that I belong to. Of the pediatric patients, some are refusing to take the chance on the vaccine for their child and will simply continue shielding to protect them. Some patients have received it and their blood levels have actually increased and their antibody response is robust.
Others have taken it, their platelets have tanked, and they are now searching for a bone marrow donor. There are four of those this week, and I am in contact with all four of their mothers. Their platelets were already falling before the vaccine, and no one can make the connection for certain.
But, is this representative? Do I have all the information?
None of the respondents are from Canada.
None present medically like Hillary.
It may all just be anecdotal evidence, but in the absence of valid published research that we can actually access, it’s absolutely everything. I need data for here where we live. I need to save Hillary.
Today, the Aplastic Anaemia Trust published an article that really solidified our decision to vaccinate Hillary. We don’t feel so alone. The sample included 172 AA patients just like Hillary, all post-IST in recovery, not post-BMT. All mounted an excellent COVID vaccine response after two doses. It’s British, and not pediatric, but it’s valid data from a good source.
We booked the girls’ vaccinations two weeks ago (since Alyssa is 11), but it took some time to find an accommodation to help us keep Hillary safe. We got a lot of no’s. We couldn’t give up just because it’s harder. It’s level impossible, remember?
I can’t believe that after two years of the strictest isolation — after all that we know about airborne transmission and the immunocompromised — our only choice is to take Hillary to a public pharmacy, community centre, or busy hospital to get her life-saving vaccine.
Hillary thinks her Make-A-Wish trailer should qualify as a community-hub to offer shots to her many little friends. It has GREAT ventilation.
The Managing Pharmacist of the Osgoode Pharmacy (5 minutes up the road) was the nicest man we think we’ve ever met. Mr. Patel has been vaccinating kids in their cars all week. He didn’t need convincing and we didn’t even tell him about #StartWithHillary. He prepared the paperwork in advance and brought the kids full-size Aero bars after we waited our 15 mins after the shot while listening to the radio.
The girls are happier than they’ve ever been. The light isn’t as bright as I thought it was going to be, but my God, my heart weeps for Earth right now. We are very grateful for the privilege of receiving one of the best vaccines in the world to help protect our family. Hillary danced and yelled “I feel so alive” both before and after her shot. I can’t understand why.
Thank you for continuing to give blood and platelets to ensure there is adequate supply. Thank you for getting vaccinated. Thank you for sharing our story. Now might be a good time to ask a friend, aged 17-35, to #GetSwabbed. I’ll keep sending emails for #StudentsSavingLives. 428 more students have participated this month.
Please pray for our sweet Hillary to stay in recovery.
She has so much more joy to share with the world.