Danny Norris is 6 years old.He is bright, bubbly and full of fun and mischief. In July 2020, he was diagnosed with Stage 4 High Risk Neuroblastoma.
Neuroblastoma is a cancer of the sympathetic nervous system, with tumours often occurring in the adrenal glands or abdomen. This rare and aggressive form of childhood cancer affects approximately 7 to 10 children in Ireland annually. At diagnosis, High Risk Neuroblastoma carries a relapse rate of 60%. If the disease were to come back it is even more challenging to treat successfully. Sadly, survival rates for those children who do relapse are low, less than 10%, a stark statistic. Consequently we are fundraising for further treatment to keep Danny in remission once all frontline treatment in Ireland has ended.
Initially, Danny had a tumour on the left side of his abdomen which encompassed his left kidney and adrenal glands. To date, Danny has had to endure 12 rounds of chemotherapy, a nephrectomy (to remove his kidney), high dose chemotherapy, a stem cell transplant, 7 nights in ICU due to complications arising from high dose chemo, 23 rounds of radiotherapy as well as multiple bone marrow aspirates, blood transfusions and other medical procedures , scans , feeding tubes etc.(all in the midst of a global pandemic).
Danny has had the best medical care and most intensive treatment available in Ireland and has bravely fought every step of the way. He has received excellent care from his Oncologist and all the staff in St. John’s Ward Crumlin as well as the Paediatric Ward in Tipperary University Hospital. We will forever be grateful for their help and support as well as the care they have shown to Danny and our family. However, Danny is now in the last phase of his frontline treatment plan in Crumlin - immunotherapy, which he will finish by early 2022. Once this has been completed, Danny will need to travel overseas for further treatment to give him the very best chance to be cancer free.
We as Danny’s parents are asking for your help to raise the necessary funds so that he can access a Bivalent Vaccine trial in Memorial Sloane Kettering Hospital (MSK) in New York . The vaccine aims to reduce the chances of Danny’s Neuroblastoma returning. This cutting edge treatment is not currently available in Ireland. MSK researchers have led the way in developing new ways to diagnose and treat cancer. They maintain one of the world’s most dynamic programmes of cancer research. Some key notes about the new vaccine trial:
Phase II Vaccine Trial: NCT04936529 –
“Phase II trial of a Bivalent Vaccine with the Immunological Adjuvant OPT-821 (QS-21), in Combination with Oral β-glucan and randomization of GM-CSF, for High-Risk Neuroblastoma”
The new trial is actively accruing and is 5 years in length. If eligible, Danny would receive 14 injections of the vaccine: 7 in year 1, 4 in year 2, and 1 in years 3, 4, and 5.
You can read more about the trial here:
Participation in a cutting-edge clinical trial is, understandably, very expensive, but we are committed to giving Danny that chance and reducing his risk of relapse. We are seeking to raise €380,000. As this is a Phase II Clinical trial there is currently no available funding through our Health Insurance or the HSE.
Since diagnosis, Danny’s life has changed dramatically, a typical day involves blood pressure checks, medication, injections, blood tests and transfusions. Danny experienced pain & discomfort as well as all side effects usually associated with chemotherapy but he rarely complained. He really is a little trooper who takes each day and each new challenge in his stride. As parents we couldn’t be prouder of Danny and his two big brothers Charlie age 10 and Shay age 8.The periods of prolonged and unexpected separation have been particularly difficult for all three boys and the high levels of uncertainty they now face on a daily basis has been quite an adjustment for them all. However, they still continue to love, care (and fight) as only brothers can. They love to play LEGO together or PlayStation is also a firm favourite. Danny loves stories and colouring, his favourite animals are Pandas and Turtles. He will always have a soft toy of either under his arm for any hospital visits or appointments.
Danny shows unbelievable courage & strength of character everyday. His hearty laugh and smiley face, have kept us all going through some difficult days. To us he really is a little star and we couldn’t be prouder of Danny and his brothers.
Although Danny still has a tough battle ahead of him with several medical mountains to climb. We as his parents are committed to giving him the very best chance to beat cancer once and for all. Your support is greatly appreciated and if you are able to share this campaign with your family, friends and colleagues, we would be very grateful.