It’s been awhile since I posted un update on Jayson. Our lives have been so busy with so many different medical treatments and long hospitals stays it’s just been so time consuming it’s hard to keep up with it all.
Jayson has now finished 7 round of chemotherapy and stem cell transplant and is getting ready to begin radiation. We had a terrible time with transplant and there were a couple of days where we felt like we almost lost Jayson. He has quite a few very dangerous complications that we did not expect and he ended up in the PICU for a few nights.
Transplant: The first few days of transplant are called “conditioning”, this is when Jayson recevied 5 days of very high dose chemotherapy. We were convinced the chemotherapy wasn’t working because he was flying through the days with zero complications. Well that didn’t last long and soon he was complaining of very bad chest pain with each and every breath. Chest x-rays confirmed that he had penumonia and several areas of collapse in his lungs which caused a great deal of pain. The only way to fix these problems is to get Jayson out of bed and sitting up at a table in order to keep his lungs moving air to re-inflate the lung collapse and get rid of the penumonia. This was agony. Watching him sit at the table in so much pain was very difficult on all of us. The next life threating complication that came up started when we noticed his belly expanding. Over night Jayson’s belly swelled to a scary point that caused him so much pain he was on a constant drip of dillauded and also had what they call a PCA pump that allows him to click a button every 10 minutes to get an extra bolus of pain meds. After several ultra sounds it was verified that he did indeed have what we all feare “Veno Occlusive Diease”. VOD causes major problems in the liver, basically the major vein in the liver gets occluded and the blood isn’t able to flow through the proper way and it reverses instead basically poisioning his body and dumping tons of excess fluids into his belly causing it to swell to a very dangerous level. The only way to give him relief was to insert a tube into the pocket of fluid in his belly to drain the excess fluid. They sent us up to the PICU because Jayson had become very very ill and he needed much more support than they could give him in the ICU rooms of the oncology department where he was receiving his stem cell transplant treatment. The drain helped a tremendous amount and took the pressure off of all the major organs that the fluid had been crushing. The only problem we had was that the drains are very temporary and his first drain ended up going bad within a day or two. He ended up needing a second drain a couple days later. It took over a week for the VOD to reverse it’self and when it did we saw major changes in Jayson very quickly. He started feeling better and looking better almost right away. Jayson seems to have every complication they warn us about but they tell you it’s very rare to see and we shouldn’t worry about it because they have only seen it happen a few times in their cararers.
Radiation: Shortly after being released from the hospital following transplant we took Jayson in to get his after transplant scans for radiation. They are checking for any active spots of Neuroblastoma in his body and they will target those areas in radiation. They also had to make casts of his body that day as well. He will receive 20 rounds of radiation to his right shoulder, 20 rounds to the original tumor site (right adrenal gland, which was removed in surgery but they still radiate the site) and he will receive an unknown amount to his right knee and femur. When radiation starts we will take him to the hospital once a day and the actual radiation will only take minutes each time. From what we understand after talking to other parents of children with cancer, radiation usually takes a lot out of them. One mom told us that her daughter that is 10 years old takes up to 4 naps daily because she is so tired from radiation. We were also told to expect his skin to turn pink in the areas that the radiation is directed to. After radiation is completed he will start antibody therapy. Ugh We are not looking forward to this part of treatment.
Antibodies: We have been told horror stories about antibodies. Of course we know that every child is different but you get to know your child’s body throughout this journey and one thing we have learned is that Jayson’s body will NOT cooperate with any treatment. We have been told that the kids can get very high fevers that cause them to need cooling blankets because they can go up to 106-109 degrees. The medications they use cause extreme nerve pain and they will need to be on a constant pain med drip and lidocaine drip throughout the treatment. Their blood pressure can drop to dangerous levels or rise to dangerous levels. We have feared this treatment since we were told about it over 8 months ago but the long term survival rate goes up so much that it would be insane to not do it. We are just trying to keep positive and hope for the best. This boy needs a break.
Jayson is doing great right now. He turned 10 years old yesterday and this birthday meant more than all the others. He really had to fight to get here unlike all the other birthdays that just come and go this one he really really earned. We had some family and friends over and kept it small because his immune system is very weak due to transplant. We made him a homemade cake, had a silly string fight and had a great time with everyone. He’s just growing up so fast and I wish so much that cancer wasn’t a part of his life. Let’s hope my update for next years birthday is one without cancer!
This was taken during round 4 of chemo for Stage IV Neuroblastoma. He did great the whole round which was actually pretty short. We were very excited that he would be coming home quickly and we were expecting a large break between round 4 and 5. Things did not turn out the way we had hoped unfortunately and 4 days after coming home Jayson started having some stomach pain. The medications he had gotten in round 4 of chemo can cause all kinds of problems, and all kinds of problems is exactly what it caused. What started out as a belly ache from what we thought was constipation quickly turned into extreme pain which had him doubled over begging for his extra strong pain medication. We rushed him to Loma Linda’s ER where after a very uncomfortable night in the ER they moved him upstairs and determined that he had gotten Typhlitis (inflammation of the large intestine that can come from infection). Basically a portion of his bowels totally stopped working and it eventually begins to rot if not dealt with in a very aggressive manner. He started off with a few different medications but every day they would add another machine to his IV pole which would provide a different type of medication. They kept him NPO (no food and water) for 7 days. They wanted to give his bowels a chance to rest and allow them to start repairing themselves. When a person goes through chemotherapy the goal is to completely wipe out their white blood cells (all fast growing cells) which is what causes them to loose their hair, have issues will mucus membranes and the biggest side effect is it kills their entire immune system. This is what we battle everyday. Because he has no immune system his body got worse before it started to get better. His belly got swollen because his bowels were basically rotting, he got a fever, he was in agony and needed strong pain medication. They took new x-rays daily to monitor his progress and to make sure the problem was getting better and not worse. So after quite a few days we started to see improvement. His fever went away and the swelling in his belly went down. His pain got less and less and his x-rays and CTSCAN showed slight improvement. The doctors decided Jayson could start a liquid diet but he would still need to stay on IV nutrition to maintain his daily intake. He did pretty good and the next day they decided he could start a soft diet. This is where the trouble started once again. Jayson can’t drink liquids and he can’t eat anything without it coming right back up again. He can’t walk very far without getting sick and being very weak. We are 11 days into our hospital stay and tomorrow my boy will go in for another procedure. They will put him under once again and send a scope down his throat and they will try to figure out what is causing the extreme burning sensation in his throat and why within minutes of eating or drinking does it all come back up again. The inside of his mouth was covered in sores (common for kids in chemo) and his gums were terribly swollen, it is possible that he has the same sores down his esophagus or it’s possible that he has inflammation. We will find out tomorrow. Jayson is due to start round 5 of chemo next week which will have to be put off for awhile. We don’t know if he will get any time at home between now and then but we are hopeful. We have learned that there really is “no place like home” and that Jayson tends to heal much faster when he is at home with his family and his things then when he is stuck in a hospital bed.
We learned today that another little warrior that had fought Neuroblastoma 2-3 times had quietly passed this morning surrounded by her family after a very long and brave battle. She was a beautiful little girl. I had only learned of her a few days before her passing but reading her story through her mother’s posts on facebook and watching the videos of her on her mother’s page made it impossible not to fall in love with her instantly. RIP Isabella Rinier!