Aliki is running in the ABC 7 Gibbons Virtual 5K this year in honor of her son, Donovan.
You can provide hope for parents like Alika and patients like Donovan, with your support of our fundraising efforts in the ABC 7 Gibbons Virtual 5K Run and 3K Walk. Join us in conquering all blood cancers!
She tells us about his 2 year journey after being diagnosed with a high-risk type of ALL (Acute Lymphoblastic Leukemia Type-Beta).
“After a diagnosis on the eve of Thanksgiving 2019, our son had a really hard induction to his treatment, starting with a rare reaction to a blood platelet transfusion he needed. This reaction caused him to go into anaphylactic shock that sent us rushing to the Pediatric Intensive Care Unit.
If that weren’t enough, he then suffered complications in breathing after he had the procedure to insert his port, so he was initially put on a respirator, intubated. He fought the breathing tube, so they had to keep him in a comatose state for almost a week. When he finally was ready to come off the machines, he began to bleed internally. This was likely a combination of necrosis from the leukemic cells dying off as a result of the chemotherapy, all the steroids, and sedatives they needed to have him on.
Immediately after having an endoscopy done to find the internal bleeding and fix it his face went extremely pale, and he soon began to vomit blood. At that time, was rushed to the OR. Hours later, he was out of surgery, but intubated and sedated again for another week before the GI bleed began anew. At that point, Donovan had to be transported via helicopter to Ann & Robert H. Lurie Children’s Hospital of Chicago. The surgery this time was a success in resolving the GI bleeding. However, all of this time spent mostly sedated took a toll on his physically and cognitive state — leaving him unable to hold himself up or move much on his own—he was in a state of psychosis Unable not sleep through the night for what felt like weeks.
The recovery process to get him back to baseline was another 2 months of inpatient treatment. At this point our induction period lasted a total of 4 months in the hospital. Only to get out of the hospital to find out he relapsed in his CNS (spine). During that time, we stayed back in the hospital to get him into remission and make the biggest decision of our lives. Donovan would need a transplant or a newer treatment called CAR T cell therapy. We decided to harvest his cells and try the Car-T CAR T cell therapy treatment first at Lurie Children’s Hospital. After a month in the hospital the treatment proved to not be successful and at that point he relapsed yet again.
At this point we wanted to give him more time so we agreed to try the CAR T cell therapy one more time before opting for a bone marrow transplant. Again, another month in the hospital but the treatment was not successful. In January 2021 we prepared for his bone marrow transplant. Having to do multiple radiation treatment in a day and a crazy chemo regimen. He received his transplant on February 2nd. He began to have fevers of 106 digress soon after that. The fevers would range from 102-106 multiple times a day and this continued and still continues 2 months later. They ran every test under the sun to figure out these fevers but still no explanation.
The transplant has proven to have worked for now. As the doctors work tirelessly to find the cause of these fevers, we had the privilege of going home for a couple of weeks. The fevers have left him with little appetite and no energy. His body has a lot of work to do to get back to baseline but for now we are praying that this experience can be a thing of the past and we can move forward and recover so our almost 4-year-old can get back to running and playing with his hot wheels.”
“This experience helped us realize how much of a gift Donovan is to us. The struggle against ALL will go on for our family until Donovan is cured and we are grateful for everything and everyone who offered us support.”