Update: Great news!! Luke has been accepted into the clinical trial in Texas!! Here is what we know so far… If all goes to plan, they will head to Texas in about a month to begin treatment. He will be there for 5 to 6 weeks, providing all goes well. Luke will be only the third patient with T-cell leukemia to receive this treatment in the United States. They will be taking Joshua’s healthy cells and coating them and coding them to be put into Luke’s body to target the cancer cells. After his time in Texas, Luke will return home and prepare for another bone marrow transplant. They will be looking for a donor other than Joshua. They feel the last bone marrow transplant failed because Joshua’s cells were too perfect of a match for Luke. Please, if you are able to and meet the criteria, consider signing up with Be The Match. This is the database they use to find bone marrow donor matches for those in need, and will use to find a new donor for Luke.
All signs were leading to this trial. Heather crossed paths with the mother of a 13 year old girl who just finished the trial treatment in Texas. Her cancer, treatment, and story are so similar to Luke’s it’s eerie. The mother, while speaking to the doctors in Texas just a few days ago, had mentioned Heather and Luke’s story, to which the doctor had told her they were already on her radar. The type of cell this treatment is targeting is the exact type of cancer cell Luke has. By all accounts he should be a great candidate for this trial and treatment. Heather had a phone call tonight with the doctor that will be treating Luke. She answered all their questions, and left them feeling very positive. This is still just experimental. He will have a long road ahead. He will still need a lot of prayers and strength to get through this.
Good evening family and friends. Today we received shocking news. Luke has relapsed again. He underwent several tests last week to check everything out because he had reached the 100 day mark post-transplant. His lumbar puncture revealed cancer cells in his bone marrow again. This came as a surprise since he had been responding so well to Josh’s donor cells and to the treatment.
So what now… Well they are trying to get him into a clinical trial in Texas, called Car T at Texas Children Live, in Houston. From what we know so far, it has mainly been used to treat B-cell cancer, but this study would use it to try and treat T-cell cancer, which is the type Luke has. It’s the only study that is working to treat T-cell cancer, since it is not common. It is not FDA approved for children under 13, so we need them to approve Luke for it. They are working hard and very quickly on this. The trial has to accept him, and insurance has to approve it. If and when they approve this, they will pack up and head to Texas for the next 3 months. We are still not sure of all the details. It is likely that Joshua will have to go as well, to once again donate stem cells for them to use in Luke’s treatment. Heather will remain with Luke in Texas for the duration of his treatment. Luke is aware that this trial is experimental and his last chance.
Fighting Luke’s cancer has made it so Heather is unable to have a job outside of taking care of Luke, which is full time. She has to be his nurse at home and advocate when they are in the hospital for one of their many stays. This has been hard on them financially. If you are able to assist them, it is greatly appreciated. If you can share this page to help them get more support, it is also greatly appreciated. And for all who have already helped this last year and a half, thank you for your support. Please continue to lift Luke up in prayer, now more than ever. Please pray they accept him into this study and it successfully treats his cancer. Thank you.