Jayson's battling Stage IV Neuroblastoma

Our son Jayson was diagnosed with Stage IV High Risk Neuroblastoma with MYCN Amplification on April 11th 2012. Jayson's cancer was quite advanced by the time he was diagnosed with tumors in his right adrenal gland, tumors above his right kidney, tumors in and around his liver, cancer in his bone marrow and lesions on his hips, legs and a few other places. He came down with what we assumed was your average childhood cold, having 3 sons we have dealt with these colds many times before and we treated this cold no differently. He had a cough, runny nose, low grade temperature and his legs hurt. A week later his cough and runny nose had gone away but the low grade fever was still present and his leg pain was so severe that he had to use his hands to help lift his legs on to the sofa when he wanted to lay down. When I noticed this I took him straight to Urgent care and when they diagnosed an ear infection I decided to take him to the ER where they diagnosed him with bronchitis. For the next month or so we took him to the ER several more times getting a different basic diagnosis each time and not alleviating Jayson's pain whatsoever and his fever continued each day. His skin was pale and his eyes looked liked they were bruised. As Jayson's mom I knew something terrible was happening to him but we couldn't get anyone in the medical field to help us or pay attention for long enough to figure out what was really happening. Our luck changed when we took him to the ER and they finally ran some blood work. Jayson's inflammation levels came back drastically over the normal rate and he was then diagnosed with Juvenile Arthritis and he was given crutches and a prescription for Naproxen to help alleviate the pain from the arthritis. Over the next week Jayson's condition rapidly got worse and when we followed up with our primary care physician he told us he would prefer to run his own blood panel because he wasn't convinced they had diagnosed him properly. I am so thankful that he ran the blood work again. We got the call 3 days later telling us that we needed to take him to the Loma Linda University Medical Center ER with the lab work right away. Our doctor didn't know what was going on with him but he knew it was beyond your average doctors capabilities and that his blood work wasn't looking good. We did just that and we had him to the ER within an hour. This is when our lives changed forever. Over the next week Jayson went through a battery of testing, scans, blood work, bone marrow tests ect and on April 11th 2012 we finally got Jayson's true diagnosis Stage IV Neuroblastoma with MYCN Amplification. As a parent there aren't very many things that could be worse than hearing that your youngest child (9 years old at the time) not only had one of the most aggressive forms of childhood cancer but it was so advanced that it had spread all throughout his bone marrow and was found all over his body. Our hearts broke.
Jayson then went on to do 7 rounds of chemotherapy, several surgical procedures including the removal of his right adrenal gland which is where his primary tumor was located, stem cell transplant, and 14 rounds of radiation.
Jayson went into remission on March 21st of 2013 and we felt like the luckiest family on earth! Our son had fought a valiant battle with one of the most deadly forms of childhood cancer and he won! We all won!
Towards the middle of April I started noticing changes in Jayson's body, his skin had turned pale again and his eyes darkened the way they were when he was first diagnosed. Although it was brought to the doctors attention all of Jayson's scans continued to come up clean and cancer free but I couldn't shake the feeling that something terrible was happening again. Jayson began to have pain in his back, chest and stomach towards the beginning of June and was hospitalized on June 12th after a CTSCAN showed a mass in his stomach. Jayson hadn't been able to pass gas or stool which was due to the large intestine being blocked or swollen due to this mass in his stomach. During the first week into his hospital stay he had several more scans and X-rays that included an MIGB scan (Neuroblastoma absorbs MIGB allowing it to show up as bright spots on scans). As I sat in the chair while Jayson lay screaming on the scan table (his pain was so severe during this week in the hospital) I could see his body slowly appear on the screen and being a mom that has seen endless scans over the past year or so I have learned to read the scans so as his body showed up on the screen in small sections I could also see the cancer appear right along with it. Normally it wouldn't be a big deal if a parent could see the scan as it's happening because most parents may only see their child get 1 scan or maybe even no scans throughout that child's entire childhood so not being in the medical field they wouldn't understand what this spot or that spot meant. Unfortunately we know what each and every spot means and I knew right there and then that Jayson had relapsed. I kept telling myself that I was reading it wrong and that I'm not a doctor so there is always room for error.
A couple hours later my Jayson was sleeping in his hospital bed and I was asleep on the parents bed while my husband was doing work from the hospital room and 2 oncologists that had been working with Jayson for the past week came in and asked if they could speak with us outside of the room. I knew this could not be a good sign. When we left the room to speak with the doctors they told us that the MIGB scan had showed cancer in many area's of Jayson's body. He had new cancer that had grown up his spine, a tumor in his stomach, cancer in his chest, legs, and a new lesion on his skull and the cancer had already made it's way back into his bone marrow.
Jayson only got 2 months of remission before his cancer came back and invaded his entire body. At this point in treatment we have very few options as relapsed Neuroblastoma is considered incurable. Jayson relapsed so soon after stem cell transplant that we cannot try aggressive forms of chemo without risking the chance of organ failure and his body is so weak there is no way to operate on the mass in his stomach. Jayson's doctor decided we should start off with 2 rounds of low dose chemo to try to get Jayson some pain relief and to figure out if his cancer would respond to chemo. Jayson finished his 5 day course of chemo and when his latest scans came back it showed the cancer had gotten bigger and spread. Jayson's cancer is now chemotherapy resistant and his body is too sick and too weak to continue on with any other forms of treatment. Jayson has requested that we no longer search for new cures knowing that his body is too tired and that there is no chance of a cure at this stage. Jayson is now on hospice but continues to receive blood product and IV nutrition to help support his body so he can enjoy the days he has left.
Over the last 15 months of treatment we have amassed a almost 20,000$ in medical bills and everyday we get any where from 3-6 more. We still have to pay co-payments for Jayson's medications, gas for his hospital visits and clinic check ups and Jayson also has a list of things he would like to do before he leaves us. Jayson has no fear as he heads in to this next phase of his life. He is not afraid of death because he knows he is going to heaven where there will be no more pain, his body will be strong and healthy again and he will feel more love and happiness than he's ever known.
If you would like to donate to help out with the medical bills we have an will continue to get or to make sure Jayson is able to make all of his dreams come true in the time that he has we will be forever grateful as we are to each and every person that has been kind enough to open their hearts to our family over the past 15 months. Thank you for keeping Jayson in your thoughts and prayers and for making a very difficult journey a little bit easier.
The Brown Family

On October 10th 2013 at 12:07 A.M our precious baby boy finally left this world on his own terms. He no now pain free and I'm sure he's already been given a new body in heaven and that all of his family member and fellow children that earned their wings before him have welcomed him with open arms. Now that Jayson has passed we must ask a favor of all of you. Andy and I started making his funeral arrangements a couple of months ago in which Jayson was very involved with. Got to choose the spot he would like to be buried. His goal was to also buy the two plots on either side of Jayson's plot. I feel very strongly about this and I feel like it needs to happen so I can release myself from the guilt of thinking my boy could be buried between strangers. The plot's are 6900.00 a piece. My heart is pushing me to do this, I think about Zach and Kyle and they will have their wives to be with but Jayson has only Andy and I. We need to do this for our own sanity. If you can please donate whatever you can afford little or small it still helps us. I thank you all for your constant support and uplifting words.
  • Michelle/Bronson Christoffersen/Angleton 
    • $25 
    • 92 mos
  • Anonymous 
    • $25 
    • 92 mos
  • Anonymous 
    • $54 
    • 93 mos
  • Anonymous 
    • $50 
    • 93 mos
  • Sheri Amadon 
    • $10 
    • 93 mos
See all

Organizer

Christina Brown 
Organizer
Hesperia, CA
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