Jamie's Quest - fundraising for lifesaving cancer treatment
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Urgent help needed for lifesaving cancer treatment to save our son!
We are in a race against time to fundraise for new, lifesaving cancer treatment for our beautiful son, Jamie. Just thirteen years old, Jamie has relapsed with Rhabdomyosarcoma, a rare childhood cancer. We have found a trial for an immunotherapy vaccine treatment in Germany that could save his life, but unfortunately it cannot be funded by the NHS here in the UK, so we urgently need help to raise funds in the next three months to be able to finance his treatment.
The current chemotherapy he is on at Addenbrooke's Hospital is not a cure. His tumours are shrinking and maintaining things, but after so many rounds of chemotherapy he could become resistant to treatment and it could stop working, with his cancer returning at any time and no further treatment being available in the UK.
The immunotherapy vaccine is a novel, new treatment that has shown some positive results in patients with Sarcoma's like Jamie's, and is a different treatment to what he is currently on. The immunotherapy vaccine will be tailored specifically to him and will use his own immune system to target and fight the cancer. At this moment it is our only hope of lifesaving treatment, and we desperately need your help.
We are in a race against time to raise money for this new treatment to save him and keep our beautiful family together, keeping him in our lives and to give him the childhood and the future he deserves.
We do not like to ask for hand outs, but these are extreme and exceptional circumstances. Please help us by donating what you can, no matter how small. Every donation counts and every penny will go towards his lifesaving treatment. Please give what you can so we can beat the ticking clock and Jamie can beat his cancer.
Background
In May 2023 our world was rocked by the devastating news no parent ever wants to hear…"I'm afraid your child has cancer". Our beautiful boy, at just twelve years old, was diagnosed with Rhabdomyosarcoma (RMS), a word, and type of childhood cancer that we’d never heard of before, and one that was about to shatter our world and completely change our lives. Up until this point Jamie was extremely fit and healthy. He was an avid footballer who played five times per week for two football teams, and was appointed Captain of his school football team on joining secondary school.
A smart lad, Jamie had a bright future ahead of him. In May 2023, however, Jamie discovered a couple of lumps on the right side of his neck. After much back and forth to the GP and local hospital, his diagnosis finally came after scans and a biopsy at Addenbrookes Hospital. We were told he had high risk metastatic Alveolar Rhabdomyosarcoma. The cancer was found to have spread throughout his body and we were told things would be challenging. We were shocked, heartbroken, devastated.
As a mother, I immediately gave up work to care for Jamie. This put a lot of pressure on us financially as we only had one income to pay our mortgage and all of our bills. Adam, Jamie's dad, is self employed so any time off for hospital visits was unpaid. On giving up work I lost my company car, which was our family car, my laptop, my mobile phone. We were left in a financial struggle. Life changed dramatically, all at once, and became incredibly difficult and stressful.
Jamie endured 9 rounds of gruelling, hard-hitting, 3 weekly cycles of chemotherapy, plus 23 rounds of radiotherapy. The treatment took its toll physically, emotionally and mentally. He was in hospital more than he was out, with frequent stays during his treatment then back into hospital with high temperatures and infections, becoming ill in between treatments and constantly needing antibiotics, some of which we found he was allergic to. We were hardly at home for 6 months.
The side effects were severe, he could barely open his eyes for two days during his hospital treatment where he lay flat out on the bed, but too wired to be able to sleep, so he lay awake feeling every side effect desperately waiting for the chemotherapy to end.
The sickness was constant throughout. At the first sign of retching I would leap across his bed to place a sick bowl under his chin and hold on tightly to his feeding tube so it didn't dislodge from his stomach and be forced back up out of his nose and mouth - this happened a couple of times, and a new one had to be fitted whilst he was awake. Watching your child have a feeding tube pushed up their nose and down the back of their throat and into their stomach whilst still awake is incredibly unpleasant. The sight still haunts me.
Being on the ward in a shared room with other children and families going through the same thing was strangely comforting in knowing that we weren't going through this hellish journey alone. At the same time it was painfully heart wrenching seeing a ward full of sick, innocent children with bald heads and some with missing limbs, or who were unable to walk again. All this caused by their brutal disease having been dealt a horrendous card in life. It seemed so cruel, unfair and unjust.
Not much sleep was had when staying on the ward with the frequent sound of children crying, vomiting, or the beeping of the machines they were hooked up to that alerted the nurses when the chemotherapy that was slowly dripping through their veins had ended, or their hydration needed replacing, or at worst, due to some complication. I am still haunted by the continuous, monotonous beeping sounds of the machines to this day, as is Jamie.
On Jamie's 7th round of chemotherapy he developed an allergic reaction to one of the medications which caused him to twitch as though he was having a seizure. I awoke in the middle of the night to find him shaking uncontrollably and thought he was having a fit. I pulled the emergency cord and a flurry of dedicated, hard working nurses who were on the night shift were there in minutes and the on duty doctor was called to examine him. It was incredibly scary and difficult to watch. Fortunately the twitching passed and the doctors were able to swap the chemotherapy medication with a different one for the next round, so he could continue what we thought were his final two rounds of treatment.
After each round of treatment Jamie was too weak to stand or walk and would have to be wheeled out in a wheelchair and carried from the car into the house when he returned home from the torturous treatment his body had just endured. He would then spend two days on the sofa, too ill to get up or sit up, let alone walk upstairs. We'd leave the hospital armed with a carrier bag full of medication to remedy all the horrible side effects that he was about to experience over the next couple of weeks.
If he was lucky, he'd get several days at home where he started to pick up and feel better before the next round of treatment would begin. More often than not, he would spike a temperature 7 days after completing his round of chemotherapy and would be admitted to hospital needing both a blood and platelet transfusion, and antibiotics for suspected infection. He would then return home for just a few days before starting the cycle again. It was relentless and exhausting.
It was an incredibly difficult time for him, and the rest of our family. Jamie, however, battled throughout and remained unbelievably brave, stoic and positive despite everything he was going through. He was a true inspiration. The only time he got really upset was a day or two leading up to his next round of treatment, as he knew what was in store for him and how it would make him feel.
To our delight the long course of chemotherapy and radiotherapy showed that he went into complete remission. He was then put on oral maintenance chemotherapy that he was able to take at home. Jamie's hair begun to grow back, his energy levels started to pick up, and he returned to school and even football training! Things were looking up and he was starting to go back to living a normal life. Things were starting to return to some kind of normal. We had our boy back.
Regular scans continued to show that Jamie was in remission...hallelujah! But at around six months he started to feel a pain in his stomach and a new lump appeared on his back. A CT scan showed that the cancer had returned in three places...aggressively, and with a vengeance. Tumours were visible in his stomach, next to his heart, and next to his lung. Devastation kicked in once again. We were heartbroken. How could this be happening, again? Jamie was offered another course of a different type of chemotherapy used for relapsed RMS, but we were told that it was not a cure, and that the cancer could return at any time.
He begun a different type of chemotherapy in May 2024 for patients who have relapsed from Rhabdomyosarcoma. At their worst his side effects left him unable to eat for over a week due to mucositis and extremely sore mouth ulcers where he was unable to open his mouth to talk, and unable to eat. The only thing he could tolerate was iced water fed to him through a straw.
Consequently, his weight plummeted to an all time low, along with his energy levels. He was extremely weak and his small frame and low weight meant it was too dangerous for him to undergo any further chemotherapy without any intervention. We opted for Jamie to have a peg fitted directly into his stomach so we were able to feed him through a feeding tube should he encounter such harsh side effects again. He underwent an operation which left his stomach incredibly sore.
As a parent it is heart breaking to watch your child have to go through such awful things, things that no child should have to go through. The upside of the feeding peg is that he could still swim, shower and bath easily; things he could not do when he had a Hickman line fitted into his chest to allow treatment into his bloodstream via his heart. Jamie is still unable to do any contact sports however, or football that he loves as it could knock and injure the feeding peg and tube that is fitted directly into his stomach.
Now on his 14th round of chemotherapy, Jamie is responding well to his current VIT chemo at Addenbrookes. Everything is shrinking currently and moving in the right direction. We are painfully aware, however, that it could return at any time, but his bravery, his fighting spirit and his calm, stoic and positive attitude is keeping him, and us going.
As parents we will do absolutely anything for our beautiful, amazing boy. We are therefore constantly looking into new trials and treatments, both conventional and complementary. Medicine is changing all the time and we remain hopeful and positive that there is something around that corner that will save our beautiful son's life.
Leaving no stone unturned on our far and wide search we have found a trial in Germany that offers a tailor made immunotherapy vaccine for children who have relapsed with Rhabdomyosarcoma that could potentially save lives. There are obstacles and barriers but we intend to push forward and get Jamie on this trial as it is the best opportunity to save him and give him the future that he deserves.
To do this we need to raise £300,000 to cover treatment and travel costs back and forth to Germany. Whilst this seems like an exceptional amount of money we would like to ask for donations, no matter how small, to contribute towards this much needed cause to save our son. We will be eternally grateful for any support that you could give to save our beautiful boy and keep him in our lives.
As parents we refuse to lose our son, our eldest son refuses to lose his brother, and our parents refuse to lose their beloved grandson. He is a much loved boy by his family and amazing friends. Please support us to save Jamie and give him back the life he deserves. Every penny will go towards his cause. We are forever grateful for any donation no matter how small. Thank you so much.
Rhabdomyosarcoma (RMS) is a rare and aggressive type of cancer that effects muscle tissue with just an average of 112 cases diagnosed every year in England. Rhabdomyosarcoma makes up 2.84% of all soft tissue sarcomas, and about 0.04% of all cancers*. Due to these low statistics, limited funding and research into this type of Sarcoma is available with patients like Jamie undergoing harsh treatment, and being presented with a huge challenge and difficult outcomes.
Cancer is the number one killer of children in the UK. For under 15 year olds, there are 5 new cases diagnosed every day, and 4 deaths a week. Yet childhood cancer receives less than 3% of cancer funding.**
Please help us in our Quest for Jamie by donating to his cause, and in the process helping us raise awareness to help support kinder treatments for children and families devastated by cancer.
I would like to thank the doctors, nurses and staff at the children's cancer oncology ward (C2) and at the paediatric day unit (PDU) at Addenbrooke's Cambridge Hospital. The care Jamie has received has been fantastic. They are kind, caring, supportive and always on hand when you need them. There is also a school team on ward C2 who offer one to one tutoring who have been instrumental in helping to work with Jamie’s school to provide a support plan for him as he enters year 9 to study for his GCSEs, when he is well enough to do so.
References
Organizer
Sam Holson (Mum)
Organizer