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!
We got some great news the other day. Jayson had a clinic apt and we finally got the results of all of his scans that were done during his 3rd round of chemo. Over all his tumors have all shrunk. There was one area on his right shoulder that didn’t get any better but isn’t too bad. His liver and spleen have both shrunk and as of now they don’t see any signs of tumors left inside his liver. The best news is that his bone marrow that used to be 70% cancer is now 0%! We were so excited to get this news. It’s an awful feeling to have to wait for several months to see if chemo is actually saving your child’s life. Jayson’s type of cancer can react in different ways. His age makes him very high risk for this type of cancer. It’s usually only found in infants and toddlers usually not over the age of 5. Jayson is 9. Doctors are still very worried that his cancer will stop reacting to treatment and it’s something we have to watch out for constantly. We still do not know if Jayson’s cancer will respond like a small child’s would or if it’s going to react like a teenager with Neuroblastoma would react. We of course are hoping it responds the way a small child’s would respond. If it were to respond like a teen we would see a great response at the beginning of treatment and then it would stop responding all together. This would mean a death sentence. As I have mentioned before Neuroblastoma has no cure. It can be treated and some children survive and live long lives but there is always a high chance of relapse or for a secondary cancer to surface.
Recently while doing our usual mass of research on cancer drugs and drugs used to treat the symptoms we came across information about a THC synthetic based drug called Marinol. It comes in capsules and has no sent of marijuana. The great thing about this drug is that it gives people an appetite and it calms their nausea. We of course towards the beginning of this process had been told by countless people that we should let Jayson eat pot brownies or cookies or even smoke it. Jayson is 9 years old and as a mother of 3 sons the thought of giving my child pot in any form like that is absurd and not something I would be willing to do. I have spent the last 16 years of motherhood trying to teach my boys that drugs are bad and that under no circumstance would I allow that in our family. So when we learned of Marinol I started to relax and started to look forward to getting it for Jayson. We did tons of research. We would never make a decision about a drug like that without doing our homework first. We have tried many different medications to help Jayson with his constant nausea from chemo and for the 1st and 2nd round of chemo ativan, zofran and even benadryl were given and used in combination they worked alright. During the 3rd round those medications didn’t even touch his nausea. The 3rd round of chemo was his 1st round of high dose chemo and the medications were way stronger and more harsh on Jayson’s little body. Jayson is a very small boy, he’s only 9 and he weighs on a good day 64lbs. With his constant upset belly he never wanted to eat and when we could convince him to do so he wouldn’t keep it down very long. Normally this far out from the latest round of chemo he would of recovered already and his counts would be raised and he would be just like the old Jayson. This has not been the case this time around. For more than a week after he had been very weak. He couldn’t even make it down the stairs without stopping to rest. When he would go to the kitchen to grab a quick bite to eat I would see him rest his head on his arm on the counter top. He would lay his head down and breath very heavy. I would ask him what’s wrong and he would just say “i’m just so tired and weak, everything is so hard”. I would then resort to bringing all of his meals to him in his room to allow him to rest but even after a week he was still very weak. I was convinced he needed more blood or platelets. When we went to his clinic apt I was very surprised that he was just a tiny bit over the level to need platelets or blood. His ANC was still 0 even though he had been getting Neupogen (injections to raise his white blood count) daily for over a week. At this point my husband Andy and I discussed with the doctors the options for Marinol. Jayson’s doctors were very animated about the pros of using Marinol. They agreed that this may just be the best thing for Jayson at this point because he was dealing with so much nausea, weight loss and still some pain. His doctor prescribed 5mg capsules 2x daily. We picked them up from the pharmacy and when we got home we placed them in the refrigerator just as told. The problem was that I still had some reservations about giving the medication to Jayson. Although Marinol is a synthetic form of cannabis it would still give a positive reading on a drug test. It is doctor prescribed by an oncologist and would be given in doses appropriate for Jayson’s weight. I struggled with this choice. I knew in my heart that although I would never condone the use of any type of cannabis for my children I couldn’t ignore the fact that my son has Stage 4 high risk cancer and I could see him wasting away before my eyes. I helped Jayson with his bath that night and that’s when the decision was made for me. I looked down at him and all I could see was bones. He looks like a tiny skeleton with skin draped over him. This child has no fat anywhere on his body. We decided we would give Jayson his first dose the following morning before breakfast. I was very nervous about giving it to him and I was worried that he would have a reaction that was similar to being “high”. I was pleasantly surprised that he did not have that type of feeling after taking the drug. His appetite kicked in fairly quick and he ate a steady stream of food throughout the day. He did get a bit sleepy but he wasen’t groggy or laughing uncontrollably. He also did not vomit the entire day. We gave him his second dose after 5pm and that way it would hopefully carry over until the morning when he would get this next dose. He woke up this morning and was hungry right away. He slept extremely late and I do not know if this is a side effect of the medication or if it was because he was up very late the night before. That will be something we pay close attention to over the next few days. When faced with a choice of seeing your child stave himself due to how his body feels or giving your child a THC synthetic prescribed by many oncologists you will struggle with yourself and what your brain is telling you. I think it’s a parents job to do the research and do the research well. Look at all the pros and cons of all the medications your child will be receiving during treatment and figure out what your options are. My child will die without treatment. He may have already died had we not started chemo right away. He was very very ill by the time he was diagnosed. Neuroblastoma is a very very intelligent cancer. It grows rapidly, and it’s silent, not making it’s presence known until it’s taken up residence in a child’s bone marrow, vitial organs, bones, chest, brain, abdomen and other areas of their bodies. It will grow and grow until it finally has spread so far that you actually start seeing the physical signs of something being wrong. When it’s finally be found out that’s when the real fight starts. The fight to save your child’s life. Unfortunately Neuroblastoma wins this fight so often that these beautiful innocent children that had been living their lives carefree and happy end up loosing their lives all to often. I don’t want Jayson to fall into that category. I wish daily that there was a way to trade him places. I have gotten lost in thought so many times just thinking of how happy that would make me to trade him places. I wish I wish I wish. There wouldn’t be a nanosecond of hesitation. It would be the greatest gift in the universe to take away his pain and carry it for him. To make sure he gets to have children of his own and grand kids and not loose his hearing, his ability to procreate and his childhood. I wouldn’t wish this on the worst people in the world.