To Whom it may concern:
My name is Christina Brown, I am the mother of 3 amazing sons Kyle, Zachary and Jayson. On April 11, 2012 our perfect world changed forever. Our son Jayson who was 9 years old at the time was diagnosed with Stage IV Neuroblastoma High Risk. Jayson was a healthy happy boy until about a month or so before diagnosis. At the end of February Jayson caught a cold, he had a slight cough, runny nose, low grade fever and pain in his right thigh. A week later his cold was gone but the pain in his right leg had become unbearable and his low grade fever continued. Over the next month we took him to the ER 5 times, urgent care twice and our primary care physician. After finally getting someone to pay attention to us and run blood work he was diagnosed with juvenile arthritis. Over the next few days his pain increased and we got more blood test results from our primary care physician and he sent us to Loma Linda University Medical Center right away with the results. This was when our lives changed forever.
We were told that the cancer had invaded his bone marrow and he had tumors throughout his abdomen and lesions on many of his bones. This type of cancer is very rarely found in children of Jayson’s age as it is usually reserved for infants and toddlers. Because of Jayson’s age at the time of diagnosis the outlook was not good and the chances of him surviving this were slim. We did not accept this news. My husband and I jumped in to research mode and we didn’t stop until we educated ourselves enough to find any option available to Jayson to help him beat this cancer.
Jayson has now endured 7 rounds of chemotherapy which has caused a host of side effects, some being permanent such as moderate to severe high frequency hearing loss which he will require hearing aids on both sides. He is 45 days post bone marrow transplant which we were not sure he would survive due to the major life threatening complications he had to fight. He has had many surgical procedures and hundreds of tests and scans to monitor his progress and for diagnosis. He has fought bouts of depression during which he begged us to allow him to quit treatment while explaining that he understands the consequences of quitting. He explained to us with perfect clarity that he may only be 9 years old but this is his body and should be able choose whether or not he goes through treatment. His tastes buds have been affected and he no longer enjoys any of the foods he once loved. He is no longer allowed to attend regular school because being exposed to other children with common colds or things such as chicken pox could potentially kill him because his immune system is so severely compromised. He can no longer have friends come to our home for the same reason. He has had to endure the separation from his rabbits that he loves as if they were his children because they too can cause him to get sick. On days that Jayson has been allowed outside of our home other children and many adults stare at him as if he were an object instead of seeing him as one of the strongest men on earth.
When Jayson is at home he is usually hooked up to IV’s for up to 16 hours a day to help supplement his nutrition because chemotherapy makes him so sick he has no desire to eat and he tends to loose anywhere from 5-10lbs during each round of chemotherapy . He takes on average 10 pills a day and on occasion he gets injections at home. He has lost his hair too many times to count and when his hair has started to grow back in it’s managed to go from light blonde to black due to the chemotherapy. He has had tubes surgically inserted into his abdomen to drain excess fluids as a result of the veins in his liver becoming occluded which no longer allowed the blood to flow in the proper direction which in turn caused his liver to poison his body and dump liter upon liter of fluid in his belly.
Jayson will begin radiation tomorrow. He will receive 20 rounds of radiation to his right shoulder, 20 rounds of radiation to the original tumor site (right adrenal gland which was surgically removed after his 5th round of chemotherapy) and another 20 rounds to several areas of his right leg. He will be required to go to the hospital once a day to receive radiation while also being required to attend clinic visits with his transplant doctors 3 days a week as well to check his platelet, hemoglobin, white blood cell counts and they will decided if he needs a bag of platelets or a bag of blood. These appointments sometimes last up to 12 hours depending on how quickly they can get the blood product and infuse it into Jayson’s body.
When you become a parent you worry about raising your children the right way. You worry about them getting the best education and about what type of person they will become. Will they bully other children or will the be the child that steps in to stop bullying. You worry about weather or not to immunize your children or if they are brushing their teeth before bed. You worry about them fitting in with others and being accepted by their peers. When I became a mom at the young age of 17 the idea of one day down the line having a child that would develop Stage IV Neuroblastoma never crossed my mind. I never entertained the idea of spending months on end swapping every other night with my husband in a hospital away from our other children. Never did I imagine that one of my children would have to fight for his life every day just to have another one. I never thought I would sit next to one of my children while he lay in a hospital bed with tubes sticking out of his belly and lines sticking out of his chest and arms wondering if he would still be alive the following day. These are the things you don’t think about the day your handed that little critter that had been growing in your belly for the last 10 months.
I have never felt more helpless in my entire life. There is no way I can take the cancer away from Jayson. I can’t ask the nurses to put the large needle in my chest instead of Jayson’s. I can’t take the medications for him and I can’t give him my hair when his falls out. I can’t bring back his hearing or fix his taste buds so he can enjoy the flavors of his favorite foods again. I can’t take away the constant nauseous feeling he has in his belly or the pain he feels all over his body or the fear he must have when he thinks about enduring all that he’s endured and knowing that even after all of this it may not work or that he may have to go through this fight all over again.
I cannot change any of these things. What I can do for my son is promise him the absolute best medical care his dad and I can find. We educated ourselves by doing hundreds of hours of research on everything Neuroblastoma. We flew our son to another hospital in another state to get a second opinion to make sure we were making the right decision when it came to the treatment our son would receive. We found the finest surgeon with the most experience on the West Coast to do Jayson’s tumor resection. We spoke with countless other parents that have been through or are currently going through the same process trying to save their child’s life and asked endless amounts of questions so we knew what to expect ahead of time to make sure we were prepared for any possible outcome.
We make sure Jayson knows how brave we think he is and that he is an inspiration to everyone he meets but most of all he is an inspiration to us and his big brothers. We tell him how much we love him and how sorry we are that he was dealt this hand in life and that we are truly convinced that we think he is meant to grow up and become the person that will make a difference in the treatment of Neuroblastoma. We try our hardest to make sure Jayson knows he is not alone. We are fighting with him along with the rest of our family, friends and complete strangers that all want Jayson to survive this. The only other thing I can do for my son is to give him a voice. To write countless letters to local representatives asking for their help and support to allocate more funding for Neuroblastoma research. I can also help educate others about national childhood cancer statistics and statistics about Neuroblastoma specifically. These are the things I CAN do for my son and other childhood cancer fighters.
I have written this letter to each of you and I ask for you help. Please I beg of you, take a few minutes to write your local representatives and help us get more funding for research to end childhood cancer and Neuroblastoma. Here is a link that has made it very easy for all of us to use our voices and to demand help to save our children and my son Jayson. Just follow the simple steps and I welcome all of you that are interested to use any portion of Jayson’s story in your letter to your local rep. http://neuroblastomacancer.org/write-your-representatives.php
Neuroblastoma is a common and often difficult type of cancer to treat and most often occurs in infancy.
In the United States about 600 children are diagnosed with Neuroblastoma each year.
Neuroblastoma is the most common tumor found in children under the age of 1.
EVERY 16 HOURS A CHILD WITH NEUROBLASTOMA DIES!
There is no known cure for relapsed Neuroblastoma.
Nearly 70% of those children first diagnosed with Neuroblastoma have disease that has already metastasized or spread to other parts of their bodies. When disease has spread at diagnosis and the child is over the age of 2 there is less than a 30% chance of survival.
Childhood Cancer Facts:
There are 15 children diagnosed with childhood cancer for every 1 child diagnosed with AIDS yet the US invests approximately $595,000 per victim of pediatric AIDS while only investing $20,000 per victim of childhood cancer.
The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that breast cancer received 12%, prostate cancer received 7% and all 12 major groups of pediatric cancer combined received less than 3%.
The American Cancer Society spends less than $.70 cents of every $100 raised on childhood cancer.
Childhood cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
Each year over 2300 children will die due to childhood cancer.
Every school day 46 children will be diagnosed with some form of childhood cancer.
1 in every 330 children will be diagnosed by age 20.
80% of children have metastasized cancer by the time of diagnosis. Only 20% of adults with cancer show that the disease has spread or metastasized at diagnosis.
Detecting childhood cancer at an early stage when the disease would react more favorably to treatment is extremely difficult.
Even with medical insurance families with a child fighting childhood cancer will have on average $40,000 of out of pocket expenses not including travel.
Treatment can continue for several years depending on the type of cancer and the therapy given.
From one parent to another, one human to another please put yourselves in my shoes for just a few minutes. Try to imagine what you would be willing to do to save your child’s life. I would do anything to make sure Jayson out lives me and that he gets a real chance at a happy healthy life but I cannot do this alone. My voice is just not loud enough so I am begging for your help. You can read more about Jayson’s story by going to www.caringbridge.org/visit/jaysonbrown or by visiting Jayson’s Facebook page at https://www.facebook.com/helpjaysonbrown.
With heartfelt endless thanks to each and everyone of you that have taken the time to read about Jayson’s story.
(Proud mother of the bravest boy I have ever had the pleasure of loving and of the 2 strongest big brothers on earth)
If you are interested in donating to help with Jayson’s medical care costs please visit his page at http://fnd.us/c/9JKB7.
This month is a special month. September is National Childhood Cancer Awareness Month! This is our chance to work together to spread awareness and to help put an end to childhood cancer forever. Our 9 year old son Jayson is currently fighting Stage IV Neuroblastoma. I’m not a doctor or a scientist, i’m a mom and I don’t want my son to become a statistic. I want him to grow up, go to school, get married, have children and grow old. I want what every parent wants for their children. I don’t want him spending the remainder of his childhood in a hospital bed hooked up to tubes and wires and sick non-stop due to the medications they pump into him to save his life. I can’t cure cancer but I can help get the word out there about cancer and about my son!
Here are some facts that everyone should know about Childhood Cancer in the US
Every school day 46 children will be diagnosed with some form of childhood cancer
On average 12,500 children and teenagers will be diagnosed with cancer this year
Childhood cancer is the #1 disease related death for children
Cancer in childhood occurs regularly, randomly, spares no ethnic group, socioeconomic class or geographic region
What can we do to help secure more funding for research for childhood cancer? We can write our local representatives. It’s easy to do and here is an example. This is a link with a PRE-WRITTEN letter that you can use to open the lines of communication with your local reps. In this case the letter is about Neuroblastoma which is the kind of cancer my son is fighting. All you need to do is click the link and follow the simple instructions. Your more than welcome to add some info on my son Jayson to make the letter a little more personal.
Link for contacting local reps http://neuroblastomacancer.org/write-your-representatives.php
Link for Jaysons Caring Bridge page to add to your letter if you like www.caringbridge.org/visit/jaysonbrown
I have done this myself. We all have a voice and we need to let our government know that we are not going to let childhood cancer kill our children anymore. We need funding, we need help. Please share the link with friends and family and ask them to write their local representatives. It only takes a few minutes and it could potentially save a child’s life. Also I would like to share another link that includes a video of a performance Taylor Swift did recently at the Stand Up To Cancer event. The song she preformed was written about a 4 year old boy called Ronan that died while fighting Stage IV neuroblastoma. It’s a touching song, and it hits home for not only me but for anyone that has a child. NO CHILD’S LIFE SHOULD BE TAKEN BY CANCER!
Link for Taylor Swifts performance of “Ronan” http://youtu.be/CS7JrI-JPOc
Jayson’s setup during this current hospital stay after getting Typhlitis.
Every year around the 4th of July my little family makes an 8 hour drive to Utah for my husband’s family reunion. His family has a beautiful ranch just North East of Zion National Park and every year their family gets together for a large family reunion. Some years are much bigger than others depending on if it’s the more extended family or just my husbands parents, their children and grandchildren. (Even with just them there’s 30 or so people) This family reunion is a lot of fun. I have been attending them since my husband and I started dating in 1998. They have 2 small cabins on the property that are usually reserved for the families that have little ones at the time of the reunion or for those that need to sleep indoors and the rest of us put up our tents and we do it the old fashion way. One of the greatest things about these reunions is that the kids get to play with their cousins. In my family we have very few cousins and all of them can see each other fairly often but in my husbands family there are tons of cousins spread out across the states and they all look forward to the reunion so they can spend time hiking, playing, swimming and being silly together. This year was the very first year (out of 14) that we didn’t plan on attending the reunion. Kyle our oldest and Zachary our middle son had still planned on heading up with their grandma and grandpa but we expected Jayson to be starting his 4th round of chemo during the reunion and we knew that it wouldn’t be possible to take him. Jayson had been out of the hospital following his 3rd round of chemo for almost 4 weeks at the time the reunion would be taking place. We took Jayson to his clinic visit and we were told his counts were too low to start chemo again and we would wait another week to check again. Normally when Jaysons white blood cell count starts to rise it doubles each day which would of meant his counts would of been really high in just a couple of days. That’s when we hatched a plan.
We knew Jayson wouldn’t be able to stay in a tent for 3 nights due to everything that comes along with a child that has stage 4 cancer and we knew he couldn’t stay in one of the family cabins because they are only used a few times a year and they tend to have a couple mice in them that leave little gifts behind. Not a healthy environment for a child with little immune system. Jayson was heart broken when we told him that he would not be able to attend the reunion this year. His life has changed so much since diagnosis and he has had to miss out on countless things during this time. We felt like we couldn’t allow him to miss the chance to see all of his cousins on my husbands side and all of his aunts and uncles as well. The problem was that by the time we figured out that we could attend we only had a day and a half to plan the whole thing. We got online and found several nearby resorts and finally found 1 that was only 6 miles away from the family ranch and they had 1 cabin left (the champagne suite). It had 1 king bed, 1 double bed, a jacuzzi bath tub, A/C, fridge, microwave and TV. It had everything we needed to make sure Jayson could go to the reunion and stay in a healthy environment. When we told Jayson we were going to the reunion it was like we told him he gets to go to Disneyland. He was so happy. We had to really put some thought into everything when it came to packing and preparing to make sure we had everything we needed to keep him safe but it was absolutely worth it. W
We get up to the ranch pretty late on Thursday night so we just went straight to the resort. We were so excited when we pulled up because we noticed that just outside our room there was a meadow that held 2 mama horses, one with a foal and one with a colt. Myself and my 3 boys are HUGE animal loves so this was a huge treat. The resort also had 2 mini horses and they had a tiny colt as well. This resort also had a many acres that held hundreds of buffalo. Absolutely beautiful. We discussed with Jayson that although we were at the reunion he would need to listen to his body very carefully and pay attention to any signs that his body was getting tired. I feel like that discussion went in one ear and out the other. The second he saw his cousins you wouldn’t of known he had stage 4 Neuroblastoma if it wasen’t for his bald head. He had so much energy. He was able to take part in 1 small hike into Zion National Park and we were so happy that his cousins changed their plans to make sure he could join them with everything they did. He was also able to run around at the Coral Pink Sand Dunes. We had bought him special UV shirts so his skin was protected along with sunblock, hats and sunglasses. We went swimming at Zion Ponderosa which is a 2 minute drive from the family ranch and Jayson was able to swim with everyone else. He played and played all day each day and made memories he will never forget. We took lots of pictures and we let him enjoy himself just like every child should be able to at a family reunion.
The day that the reunion ended Jayson was exhausted. He really over did it and pushed his little body a little further than it should of been pushed but trying to tell a 9 year old boy to take it easy is something that I find impossible sometimes to enforce. Seeing him smiling and playing and being carefree was something that I wouldn’t trade for anything. He needed this trip and we will never forget it. He recently told us that he would like to make a bucket list. He had heard of bucket lists on a TV show he had watched and he feels like he needs to make one. I think he marked off a few items on his list during this trip. Playing with the baby horses, playing with his cousins, swimming, hiking, collecting awesome rocks and enjoying every minute of it was priceless and we are so thankful that we were able to get him to this reunion.
This week is International Neuroblastoma Awareness Week. Although this is not the United States offical awareness week I couldn’t help but want to take advantage of the chance to spread the word about this cancer that is currently found a home in my 9 year old son Jaysons body. So many people want to know what they can do to help. There are several things you can do to help. If you looking to help Jayson personally you can donate to help us pay for his medical care (prescription costs, co-payments, gas money to get to and from clinic and hospital apts, items such as gloves, masks, hand sanitizer ect.). You can donate by using this link https://fundrazr.com/campaigns/9JKB7. Maybe you want to donate to help fund Neuroblastoma reseach. Maybe you don’t have any money to spare but you feel the need to do something to help save childrens lives like my son Jayson. Well something we can all do that will only take a few minutes out of your day is by clicking the link posted and following the instructions to send a pre-written letter to your local congressmen. It’s so easy to do. They have made it very simple. Click the name of this post, then on the left side of the page you will see a “TAKE ACTION” click that link, put in your zip code to find your local congressmen, copy the pre-written letter and post it in an email to all of your local congressmen. Remember to add in your congressmans name and at the bottom of the letter remember to put YOUR contact information so they can see that it isn’t just spam. I invite all of you to post Jaysons caring bridge page link to your letter to make it a little more personal. That link is www.caringbridge.org/visit/jaysonbrown . It only take about 5-10 minutes depending on if you choose to personalize your letter. I chose to add a little bit about Jayson into all of mine because it makes me feel good to open our lives to others in order to help Jayson. I beg you all to reach out to others and ask friends and family to please follow these instructions to help my son Jayson and every other child fighting Neuroblastoma. It only takes a few minutes to help save a life. Thank you
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!
Jayson having some fun at home between rounds of chemo
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.
I read an article the other day that explained when a person “beats” cancer, they don’t actually stop fighting. It’s not like when a person breaks a bone. When someone gets an injury like a broken bone, the bone heals and then usually they forget all about it. If your one of the lucky ones that beats cancer that isn’t the end of your battle. We are finding this out way soon. Jayson hasn’t come any where close to beating Neuroblastoma and he’s already starting to show side effects from the chemotherapy. My husband was spending the night with Jayson at the hospital a couple days ago when Jayson tells him that he thinks he’s going deaf. He mentions that he hears loud ringing in his ears and that everything sounds muffled. When Andy told me what Jayson said it broke my heart. We knew in advanced that hearing loss was a real possibility but we never expected it to happen this soon. The medication that causes hearing loss is one that Jayson only started getting on the 7th of June. The other rounds of chemo did not include cisplatin which is the med responsible for damaging the fine hairs in the ear canal that pick up vibrations from sound waves. So this to me means that Jayson’s body doesn’t agree with that particular medication. If he’s having issues this early that is very scary. I found that it made me angry. I almost felt like a 10 year old that wasen’t getting her way. I kept thinking to myself “IT’S NOT FAIR”. It’s not fair that my perfect child has gone from a carefree life and now has to deal with constant pain, and daily medications that range anywhere from 6-12 pills a day and injections. He has to deal with endless hospital stays and poke from needles off all sizes. He can’t play the way he used to and sometimes he feels so sick he can’t even stand up for a few minutes at a time. We have had to talk with Jayson to explain how serious his form of cancer is and I can tell you this is one conversation you NEVER want to have with one of your children. He listened so deeply and he paid attention to every detail, he asked questions when he needed more explanation and we could see it in his face that he was really absorbing everything we told him. I knew deep down what we told him scared him. The one thing about Jayson that everyone needs to know is that Jayson is smarter than the average bear. If I had to compare his intelligence to another age group I would say he ranks in the teenage group for how smart he is and emotionally he’s right up there with adults. So if Andy and I were to keep things from him he would know and that would be heart breaking. We have always kept an honest relationship with our 3 boys. So honest that we have been put in some very awkward positions when our boys have asked us some very interesting questions. But having that type of relationship with our boys has opened up a whole new world to the kind of life we have with them. That being said we are very honest with Jayson. This makes it so much easier during treatment because we don’t have to try to hide things from him. This is true with the hearing loss problem as well. Jayson came home from the hospital yesterday and he wasen’t feeling very well. I was bringing him food in his room and he told me that his ears were ringing really loud. I didn’t want to tell him at that point that we expected this to happen and especially because at that point I hadn’t had a chance to do the research I needed before I told him anything about it at all. So I started doing my research and of course I didn’t like what I saw. I didn’t like the page after page of negative answers. It sounds like hearing loss during and after chemo are very common, and very under reported. The system that doctors use for reporting hearing loss for children in chemo is one that is highly flawed. They have no clue what the numbers really are. The problem with hearing loss from chemo is that in most cases the hearing loss comes way after chemo is done. After beating cancer people have to deal with not being able to children because chemo will make them 98% sterile, they will deal with hearing loss, learning disabilities, physical disabilities, problems concentrating, secondary cancers which is common for children fighting Neuroblastoma and tons of other side effects. This is a lot to handle. And on some days I don’t handle it with grace. I don’t show my emotions about Jaysons illness on the outside because it would only hurt him to see me upset all the time. So I write, and write. Although I don’t write well it really does help. Getting the word out about Jayson and letting people into his life has been helpful. The other goal with my writing is to help raise awareness about neuroblastoma and how dangerous it is. My son and the other children out there fighting this cancer need help. They need more research and they need people to donate their money, their time and their voice. We need to put an end to this cancer and help prevent these side effects so our children can live the happy healthy lives they deserve.