In February 2017 at age 12, Jacob was diagnosed with Acute Lymphoblastic Leukemia (ALL). Since that day, our world has been forever changed. We have been battling this disease for almost 3 years now.
Initially, Jacob spent the first 3 months after diagnosis in the hospital where he received life-saving treatment. He suffered many complications due to the intense chemotherapy and also had to be treated for that. It was an excruciating period. But after over 7 months of gruelling treatment, Jacob finally reached the maintenance stage, meaning he only needed to get daily oral chemotherapy and IV chemo once a month. This too was difficult but we managed. However, by October 2018, our world was rocked again. Jacob had a relapse. Once again, we were back at CHEO for chemotherapy re-induction. We went through a roller-coaster of emotions. Treatment wasn’t working and we needed to look at options. We applied for and received approval for an experimental drug; this seemed to work initially but it took a toll on him, physically and mentally. He had to spend the next six months in and out of the hospital due to fevers and infections. But we were willing to continue if we were getting results. But in May of 2019 we received more terrible news. The treatment was not working and the Doctors (Drs) needed to reassess and come up with a new plan. So Jacob was re-admitted to CHEO again in May, where he remained for over 4 months. Things were getting worse and his leukemia presented itself in his eyes. He lost his vision and was in great pain. Drs. immediately started radiation to his brain. We were relieved that seemed to work and he was very lucky that his eyesight returned to almost normal. The focus since then has been to try to get him back in to remission. In discussions with Drs, we realized that his best chance was to get a new treatment called CAR T-cell therapy, where Drs would extract his own lymphocytes, genetically modify them and reinfuse him so that his own cells can target and destroy the cancer cells. This treatment is only offered at SickKids and we made several attempts to go there for this treatment only to be rerouted back to Ottawa. Jacob’s body is just too weak to produce enough healthy lymphocytes for a viable extraction. This is the biggest hurdle with this revolutionary treatment. Being healthy enough, despite leukemia, to extract those healthy lymphocytes. So we are back in Ottawa looking at options.
There is currently a trial study at the Children’s Hospital of Philadelphia (CHOP). It is for a Universal CAR T-cell therapy where the lymphocytes are donated, rather than being extracted. Jacob is a candidate for this therapy and Drs have communicated with officials at CHOP to ensure that there is a spot for him. However, because this is a Phase 1 trial, Drs have to submit a request to the Ontario Ministry of Health for funding approval. To our heartache, the Ministry of Health has denied coverage for this treatment.
This is where we need your help. Throughout all of this, I, his mother, have taken time off work and returned to work once Jacob reached maintenance. Even after the relapsed, I continued to work while staying at the hospital at his side until I could no longer burn the candle on both ends. His father never stopped working because we needed to pay our bills. He also took care of Jacob’s brother Noah when Jacob was hospitalised and when I was by Jacob’s side. His father has finally also stopped working in June. As Jacob’s condition worsened, we realized that being together as a family has become our priority. This journey has been challenging and devastating, both emotionally and financially. But we have managed to make ends meet without asking for any help financially. Until now. We believe this new treatment offered at Children’s Hospital of Philadelphia is Jacob’s best chance for cure. To get into remission so that he can get the bone marrow transplant he desperately needs. We need to get there one way or another and we are asking for your help to save Jacob’s life. The cost of this treatment is $800,000 USD.
Jacob’s will to fight has never wavered. He has kept a positive outlook even on the darkest days. His laughter is infectious and he has such a quick sense of humour. We are not ready to give up. Any help would be deeply appreciated.