Hello everyone, i am starting this GoFundMe to help raise money for Justins medical bills and other expenses. As some of you may know, he was diagnosed with Myelodysplastic Syndrome in October of 2018. In easier terms, MDS is basically pre-Leukemia and if it is left untreated it would rapidly turn into full Acute Myeloid Leukemia.
Around four years ago Justin noticed that he had been vomiting every morning. He didn’t think anything of it and decided to just deal with it being that he felt better after throwing up. Throughout the years it progressively got worse. It went from just mornings to morning and afternoon. When he started working full time in April of 2017 he often felt lightheaded at work and started vomiting even more throughout the day. This continued to get worse throughout the next year, but without health insurance he couldn’t afford to go to the doctors.
On September 10th 2018 Justin texted me from work and asked me if it would be cheaper to go to urgent care or the hospital to get his stomach checked. He said that his stomach was bothering him worse than ever and asked if i would go to SOCH with him when he came home. When we got there we thought we were going to be there for two hours at the most and be out of there with a simple diagnosis for the nausea. They took vitals and everything which were normal and then took us back to a room in the ER. They came in and did blood work, and the nurses hooked him up to some IV fluids to keep him hydrated since he had been vomiting that day. Once the blood work came back the doctor told us that his Hemoglobin count was at a 5 and the normal is 14. Justin ended up staying in the hospital for 4 days while they did blood transfusions to bring his counts up, a bone marrow biopsy and many other tests trying to figure out what was wrong. SOCH found out that Justin had premature red blood cells in his blood. They couldn’t figure out what was causing this and asked us to go to a specialist and recommended Robert Wood Johnson University Hospital.
He began going to the pediatric hematology office in the CINJ building of RWJ in October of 2018. A couple days after his first appointment there the doctor called and asked if Justin could come up and go through the emergency department for more testing. They ended up admitting him for 3 days while they did a bone marrow biopsy and other tests to see if they could figure out what was going on in his body. The next week at his weekly appointment Justins doctor gave us the diagnosis, he has Myelodysplastic Syndrome and they need to act immediately before it progresses. Justin needed a bone marrow transplant as soon as possible before it progressed into AML. They began testing his siblings hoping for a perfect match, and Kayla was the perfect donor for him. At this time justin still had no health insurance besides charity care through the hospital, which would not cover the procedure that he needed. He applied for Medicaid but was denied countless times because of collecting disability through his work, which he needed to survive day to day. Until Justin was able to stop collecting disability and acquire health insurance, he came up to the office 5 days a week every four weeks to get chemotherapy. This chemo was to stabilize his condition and prevent it from progressing. He ended up having to do this for 4 months until February of 2019, when he was finally approved for health insurance. He could now get the Bone Marrow Transplant he desperately needed.
On March 6th Justin was admitted into the Bone Marrow Transplant Unit. They placed a Hickman Catheter into his chest for easy access to a major vein and to avoid placing multiple IVs in his arm every day. A couple days later they started him on two very strong chemotherapies to kill off his own bone marrow cells. On March 13th they did the infusion of Kayla’s stem cells into Justin through his Hickman Catheter. They then started him on 3 different immunosuppressants to keep the little remaining cells he had from overriding Kayla’s. The next week was very hard for him as he went through all the side effects from the aggressive chemo. Justin was in excruciating pain from mouth and throat sores due to the chemo and slept for most of the week as well as being put on a TPN due to not being able to eat. He also lost all of his hair during that week. When the pain started to subside he slowly began to eat again and was up and walking. He was very excited to go home so he was making sure he was doing everything in his power to start healing.
On March 27th we got the exciting news that his counts were starting to come up and he could go home soon.
On March 29th Justin finally came home!! Despite the lasting side effects of the chemo and having no immune system (to prevent Kayla’s cells from attacking his) he is very grateful to be home. Although it isn’t going to be easy we are trying to stay positive. At this moment Justin is on 9 different medications that he takes multiple times a day. He is going to RWJ twice a week for follow up doctors appointments which will last for a couple months. When his levels are starting to hold they will decrease the amount of appointments gradually. They are looking for any signs of Graft Vs Host Disease, making sure his counts stay leveled, and making sure his immunosuppressant is the perfect dosage. Justin has to avoid crowds, any sick people, the sunlight, and certain foods to protect himself during this delicate time. We are very hopeful that this procedure has cured him after so many years and we’re hoping he doesn’t have to endure any more suffering from any other side effects. The main thing the doctors are worrying about right now is any sign of Graft Vs Host disease, which is basically Kayla’s cells attacking his body and if that happens it won’t be easy for him.
With Justin being out of work since September of 2018 and no income, his medical bills are now starting to pile up from the past 7 months. Any donations would be greatly appreciated and would help more than you could imagine. Please keep Justin in your prayers!