Honored Kid

Robyn S.

Age 17
Robyn S. Kid Photo

Location

Dublin 9, Dublin , IE

Diagnosis

Neuroblastoma

Date of Diagnosis

September 2007

Status

In maintenance

Treated At

Our Lady's Children's Hospital, Crumlin Helen DeVos Children's Hospital

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My Story

Background to Robyn Robyn is a girl from Dublin, Ireland who is now almost 12 years of age. In September 2007 at the age of 3 Robyn was diagnosed with stage 4 Neuroblastoma. Robyn was treated with the standard protocol in Ireland (Rapid Cojec). She finished treatment in 2009 and remained in remission for over 4 years. However in July 2013 she relapsed when it was found she had a tumour in her jaw, spine, pelvis legs and orbit. She had 8 cycles of Irinotecan//temozolmide. Robyn cleared most of the disease by the 5th cycle and went on to have MIBG therapy in the UK. After MIBG she remained the same, stable with minimum disease. She went on and did CH.14.18 but the final scan showed progression in the cancer again in the same areas. This left us with no treatment options left in Ireland and we were given a 5% chance of survival for Robyn. Treatment Abroad In order to give Robyn options and the best chance of saving her life we as a family decided we had to go abroad for treatment. This led us to contacting Dr Giselle Sholler in Helen DeVos in Michigan who is leading Robyn’s treatment team at present. Robyn’s treatment team gave us the option of targeted medicine based on a biopsy from her spine. Robyn has had this treatment every 3 weeks over the past year. Each scan showed slight improvement which was very encouraging. Robyn’s most recent scan in May 2016 showed her scan to be clear. She had some stubborn spots around the spine and pelvis and just to be sure that these were gone she had 10 days of radiation. DFMO Trial This has allowed Robyn to start on the DFMO trial just last month. She will still have to travel back to Michigan at the end of July and then possibly every 8 weeks scans. This may take a minimum of 2 years to go through the current trial. Funding After funding all of Robyn's treatments in America over the past year her funds are however are running out. To keep Robyn on the 2 year trial that she has just started we need to raise another €200,000 asap. It can't end with us not being able to afford this trial, we haven't come all this way for this to happen. Please don't let this happen. Please help us in any way you can.

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