Jayson’s setup during this current hospital stay after getting Typhlitis.
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!