I want to share my story with you about my step son fighting for his life and ask you for your help. Payton, is currently 13 years old, born August 4th
, 1999. Payton has Medulloblastoma Cancer. Medulloblastoma is a rapidly-growing tumor of the cerebellum, the lower, rear portion of the brain. He was diagnosed in July of 2009. Medulloblastoma is relatively rare, accounting for less than 2% of all primary brain tumors. Tumors growing close to the brain’s fourth ventricle may expand into that cavity, blocking the normal flow of cerebrospinal fluid. This can result in hydrocephalus, which is the buildup of cerebrospinal fluid within one of the cavities of the brain. As the pressure in the brain increases due to a growing tumor or blocked fluid passages he experiences headaches, vomiting, drowsiness and lack of motor skills. These tumors remain among the most challenging pediatric brain tumors, survival rates are in the 30% – 50% range. After going through remission and continuing regular follow ups, in December of 2011, Payton relapsed. Recurrent Medulloblastoma currently has a cure rate of less than 5 percent
. We continued Chemo and Radiation through All Children’s Hospital in St. Pete which is two hours from our home. The treatments were keeping Payton stable, not killing the cancer nor did the tumor seem to be growing. As we all tried to be optimistic as we watched Payton have more good days than bad, we didn’t expect what happened next. I brought Payton home from a routine Chemo treatment at All Children’s Hospital on June 1nd
2013. As this has been a long journey, you learn to know just by looking at Payton when something isn’t right. His dad mentioned to me that he looked funny. I told him he was probably just tired from the long drive home. I had no idea we were about to be on the scariest roller coaster of our entire life. At 1:45am June 2nd
2013, Payton was staying at his grandparent’s house and started screaming in extreme pain and agony, his entire body was stiffened up. The ambulance was called immediately as he was rushed to Health Park Lee Memorial Hospital here in town. When he got there, they thought he was having trouble breathing, so they incubated him. Payton aspirated (vomited and breathed some into his lungs) so they also put a tube down his throat to remove all the liquid in his lungs. Payton was sedated and rushed to back to All Children’s Hospital to be under their care. The doctors there ran tests and surgically put a permanent shunt in Payton’s head to relieve the pressure. They weren’t sure what and why this all happened. Paytons Dad, grandparents, and myself sat by Payton’s side for days, the only response we got were tears coming down his face every time someone touched him. The doctors had pulled us aside and in so many words told us that Payton’s fight was over and that the cancer had taken over. They told us that they didn’t think Payton would ever recover or wake up. Their medical advice was for us to take out the breathing tube, which meant saying goodbye. We told them that we wanted to talk it over and they agreed to giving us as much time as we wanted. Part of us felt like, this was no life for a child, and that we’d be selfish to continue without knowing if he is in pain or not. The other half of us wasn’t done fighting. When you actually are given the decision of life and death, it’s the hardest thing you’ll ever have to deal with. No parents, or grandparents for that matter, should ever have to bury their child/grandchild. We decided to drag our feet on the decision making because we just wanted to see what happened in a few days time. The next day, Payton opened his eyes and gave a deep empty blank stare into nothing. That was progress though! I can’t tell you the excitement we all shared! We talked to him and kissed him and started to cry tears of happiness! The following day, Paton didn’t wake up at all again. We were right back where we started. We sat there all day trying to get something out of him, nothing. The next day, Payton opened his eyes and seemed to even be alert and moving his eyes for 10 seconds at a time every few hours! Again, we were so excited! The next day Payton faintly squeezed our hand, wiggled his toes!! Then again, he didn’t wake up the following day at all. This was a constant up and down for almost a full week… Finally, we got Payton to keep his eyes open for the better part of the day, and the doctors came to us once again and wanted to try to remove the tube. They told us that they didn’t think he would breathe on his own, nor did they believe he would ever breathe on his own. Again their medical advice was to remove the tube and if he couldn’t breathe on his own, to let him go peacefully. We told them that we wanted the tube back in if he couldn’t breathe on his own, we weren’t ready to throw in the towel. They removed the tube at about 10am one morning (my days were mixed together at this point) Payton was breathing on his own, but his chest was contracting so bad and he was struggling so hard to breath. It was the most horrendous thing I have ever seen! The doctors suggested that oppose to putting back in the breathing tube to use a mask that forced breaths through. The trouble of him breathing was caused from swelling in his throat. This mask also forces air into his lungs in case he stopped breathing. Even with the mask on, he was still having just as much trouble and struggling so hard to breathe. At about midnight that night, the new floor doctor, Doctor Smith whom I will never forget, came in to check on him. It was almost like a light bulb went off in her head, she asked the nurse to put him on part helium part oxygen. The nurse looked confused but did what she said. We went outside to get some fresh air while they set everything up. When we came back to the room, we almost feel to our knees, his breathing was so much less difficult! He looked comfortable for the first time! As the next few days went on, we even got a smile out of Payton here and there. He wasn’t giving up either! The doctors were amazed by his progress! We slowly attempted to take Payton off the supported breathing mask, because at this point all we wanted to do was to take him home. It was a rocky start at first, he wasn’t taking all the breaths on his own, but as he did before, he shocked everyone and eventually did all the breathing on his own! Father’s day this year is when the mask came off. It was the best Fathers day ever to hear Payton’s quiet scratchy voice tell his daddy that he loved him. Payton was released and brought home and continues to push himself to make more progress. Payton has walked short distances, eaten cheeseburgers (his favorite), and stayed awake long enough to watch cartoons. As excited as we all are, that’s one chapter closed but another one open. We are now faced with our next step to getting Payton treatment. Unfortunately, Payton is no longer strong enough for basic Chemo and Radiation. After countless hours of research, I found a place in Texas, MD Anderson Children Hospital, which has a clinical study that so far seems to have significant results. There doesn’t seem to be any side effects either! I have spoken with the doctor and he says it sounds like Payton is a perfect candidate! This treatment requires many trips back and forth from home in Florida to Huston, Texas. We also ran into a problem with Payton’s insurance considering it is out of state and he is on Florida Medicaid. This is our last hope for Payton; he has already been denied treatments because of his current health condition. We really don’t want this opportunity to go and are asking anyone and everyone for help. Thank you for taking the time to read my story.
<3 Time is precious and so is life <3