An Open Letter To Anyone That Will Listen

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 Facts:

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.

Sincerely

Christina Brown

(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.

4 months ago

5 notes

Childhood Cancer Awareness Month

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

(Source: kristinasrainbowsofhope.org)

9 months ago

2 notes

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!

10 months ago

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Update on Jayson

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!

5 months ago

3 notes

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

10 months ago

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