Of course, there has been many many bumps in the road, Jaidan hasn’t been able to catch a break: since our last post Jaidan’s oncology team found a tumor in his abdomen right above his left kidney in September. The amazing surgical team at Montefiore were able to remove the entirety of that tumor (about a 6-hour surgery) and 2 weeks later he was set to have TWO bone marrow transplants back to back. Before Jaidan’s transplants he went in for a minor surgery to place a PICC line in his right arm for more access to his heart for the high dose chemo he would require for his transplants. He ended up having that surgery re-done twice while in transplant due to the lines getting clogged. The second and third time this was done at bedside without sedation. In November Jaidan began his first transplant. During this transplant he basically had every side effect expected (oxygen problems, low blood pressures, mucositis all down his GI tract (mouth, chest, stomach and anus) fevers, pain and severe burns from THIOTEPA a high dose chemo) He also had any where from 8-15 Ng tubes placed (down his nostril into his gut) for nutrition before they decided to put him on TPN (IV feeds) . Jaidan was sent home for Halloween week and then expected right back in December for yet another transplant. But after all the ups and downs on December 14, 2017 Jaidan was declared cancer free but would need to continue treatments through August 2018 to increase the chances of his cancer not returning.
The end of January Jaidan was to get admitted for CH 12.14 (antibody therapy also known as Immunotherapy) this is a 10 hour infusion 4 days a week that requires admission and causes excruciating pain the whole 10 hours it runs. Here is where the complications began. Jaidan was then diagnosed with aHUS (atypical Hemolytic Uremic Syndrome) another rare, life threatening genetic disease that can damage to major organs like kidneys, heart and brain. But in his case was not genetic but was more associated with the toxic medication he had received to rid his cancer. Jaidan did have permanent kidney damage due to this. His body began to break down his platelets and red blood cells and he was receiving transfusions twice a week and was unable to be released from the hospital. In this phase of his treatment I was supposed to return back to work. Instead I was trying to find a doctor that had enough knowledge to treat this rare condition that had only been seen in 3 other patients so far out from transplant. Jaidans doctors didn’t know how to treat him anymore and wanted me to allow his body to recover on its own. I would not accept that as I did my research and knew how important it was for this condition to be treated asap before he would need dialysis or even further a kidney transplant.
I stopped all medication and decided to transfer him to Memorial Sloan. While in the process of transferring Jaidan to Memorial Sloan Kettering (who were readily willing to treat his condition and get him back on track with his cancer treatment) Jaidan’s body miraculously took a turn for the better. He stopped breaking down his blood and platelets, he was no longer releasing protein, schistocytes and glucose in his urine and was only getting transfused once a week. To date Jaidan hasn’t needed a transfusion in over 2 weeks. I was declined by insurance twice to get Jaidan into sloan. He was now cancer free and his preventative care was considered “not medically necessary” even though the chance of relapsed neuroblastoma is well over 50% and the treatment was imperative for Jaidans overall survival.
After making a few phone calls and agreeing to take financial responsibility for his medical needs due to his insurance being out-of- network, he was accepted into sloan and signed up for a trial phase treatment that is only offered by sloan Hu3f8. At this point I have no idea what we will be responsible to pay but I am aware that the cost of treatment is well over $100,000.00. We moved from the Bronx to a cleaner environment for our sons health and increased our commute by 30 minutes. I am now driving back and forth to the city atleast 3 times a week, paying for my own parking in the city and also food for our 3-4 hour visits a day. Jaidan is being admitted for a full week for all his cycles due to the very dangerous complications he has suffered thus far. The most recent being 3 viruses at once. He suffered from parainfluenza, human metapnemoniavirus and C-diff.
We are fundraising for the expenses we can no longer afford and whatever we will be responsible for Jaidan to continue treatment at Memorial Sloan Kettering. Should any complication arise during treatment additional funds will be needed. If funds are raised that exceed the amount needed, the hope is that this fund can provide to other childhood cancer patients and their families for years to come in honor of Jaidan Carter, a true fighter and inspiration to so many!