Carson had his latest MRI last week. While the results were not what we were hoping for, we will not give up fighting for Carson or finding a cure for him. The next steps are still being looked at to decide what is best for Carson. Any help fighting this monster is greatly appreciated! Thank you!
Hello! This is Carson’s Aunt Nikki. Sorry for the long update, but we have GOOD NEWS to report!! Carson had his second set of post-radiation MRI pictures done recently, and the tumor continues to shrink!! At his first set of scans (1 month post radiation), his tumor shrank approximately 40%. While that was very likely due to the radiation, his second set of scans now shows ANOTHER approximately 30% reduction!! His radiologist at St. Jude says that he sees no regrowth, no spreading and no further activity in the pons. He also said that the tumor was less bright (which means it is less active) and that he was “very encouraged” by what he was seeing. We are beyond thrilled to see his continued progression toward health.
For those who don’t know much about DIPG, it is an aggressive, cancerous tumor located at the base of the brain stem. It isn’t a nice little contained tumor, either. It’s insidious. It is finger-like tendrils that wrap themselves around different part of the pons region of the brain- which controls basic functions like sight, swallowing, balance, speech, etc. The prognosis is dim. Because of where it is located, treatment options are severely limited. Surgery is not an option due to its location on the brain stem and its tendril-like shape, wrapped around healthy- and very important- brain tissue. Standard chemotherapy is not an option because it does not cross the blood/brain barrier. Generally, the tumor is initially responsive to radiation (not always), but it doesn't go completely away. Then it comes back and there is nothing that standard medicine can do for them at that point. Many children with this tumor pass away within a year of diagnosis. After the standard radiation, families are left with a stark choice- you can take your child home and enjoy the time you have left, or you can try a clinical trial. Zak and Sofia researched all of the trials currently available. Sadly, there are not many to choose from and not a single one can offer a cure for this.
So, given what is a pretty grim diagnosis, how is it that Carson is doing so well?? Well, we know that the power of prayer is real and we are so grateful to all those out there who are praying for his recovery. Your prayers have meant so much to us and have brought us so much comfort in this difficult time and we cannot thank you enough for that.
There is a saying that comes to my mind often in times of need- God helps those who help themselves. To me, that means that we have an obligation to do everything in our power to effect a particular change, but that at some point, we also need His help. Zak and Sofia are doing everything in their power to find the cure for Carson, but it became clear that clinical trials could not offer them the hope they were looking for. All of the paths before them seemed closed, and then one opened up.
Zak and Sofia learned about a Chinese doctor in Los Angeles, who had cured the child of a friend of my Dad. His son did not have a DIPG tumor, but he did have a virus in his brain. Western medicine had given up on his son, but he had not. This doctor saved his child and suggested that Zak and Sofia talk to him to see if he could help them. They did, and after much conversation about Carson’s condition and the doctor’s approach, he said “Come to LA. I can help your son.” He offered hope when no other treatment did.
Sofia, Zak and Carson have now been in Los Angeles for about 3 months. Carson is receiving a very specific type of electromagnetic acupuncture from a doctor who has been successfully treating cancer patients with this technique for 30+ years. This is, as they say, “not your mother’s acupuncture!” It is a state of the art therapy based on quantum physics, and it is starting to get a lot more interest from researchers. It essentially works by stimulating the production of Carson’s own T-Cells to fight, and simultaneously stimulating the production of his Stem Cells to produce new, healthy cells. Through very precise needle placement (all coordinating to the brain) and the electricity (positive, negative, opposite, etc. charges), the electromagnetic energy/direction is created to the tumor site. Through this process, the cancerous cells then exit the body through the bowel. The very precise acupuncture plus the electricity, makes it possible to break through the blood/brain barrier (which has not been done with medicine). This is just a brief explanation, not the complete scientific explanation!
One advantage of this therapy is that it doesn’t involve any more radiation and no chemotherapy- which also means no nasty side effects! This means that instead of being sick and tired and swollen with steroids (as are many of the kids currently battling this monster), he is healthy and active. He feels great and has lots of energy. He loves throwing the baseball and football with his Dad!
The very best advantage of this therapy, though, is that it is working, and that is nothing short of a miracle. Since Carson began these treatments, he has only improved. It is not an understatement for me to say that the entire family believes that this is the right path, it is the right therapy, and it is the hope we have all been looking for.
Many of you have already contributed to help Zak and Sofia. I know you are praying for them. I know you are making food for Zachary and Luke and helping to make sure they get to their sporting events so that they are also taken care of. I know that you are fundraising for them, and I know that many of you have already donated money as well. I hope that you know how incredibly grateful and humbled we all are at the love and generosity that has come our way to help Carson, which makes it difficult to ask for more, but ask we must.
The treatment is working. The tumor is now more than 50% gone and the MRI shows that it is much less active. We believe this is the treatment that is going to bring a healthy Carson home to his brothers (and his dog, Rosie) and we will do everything in our power to make sure that happens, but the treatment is not free, it is not covered by insurance, and living expenses in CA are very expensive. Carson receives 2 treatments per day, 6 days a week. Monthly expenses run approximately $11,000 per month and Carson’s total treatment time is 7-9 months.
One of the lessons that Carson’s battle is teaching us is to humble ourselves and ask for help when we need it, and so we are asking. If it is possible, please donate and feel free to pass this on to anyone you think might also be inclined to donate. We are fighting for his life… and maybe we can offer hope to the other families facing a DIPG diagnosis as well.
Our family in south ga continues to pray for Carson's miracle. It's been a long time since I have seen you Sofia but know you are all very close at heart.
Carson, I am praying for you everyday. Stay strong! Love you. Hugs! Love, Ms. Elmore
Just donated and my comment wasn't attached. We are all praying for Carson & your sweet family! Love, Nicholas, Dawson & Kingston Jones
Carson, the Jones Family is covering you in prayer buddy!