The McGahy family is currently staying in Isaac’s Pad, their ‘home-from-home’, while six-year-old Romy continues her treatment for neuroblastoma at Southampton Children’s Hospital.
To raise funds for our compassionate housing and awareness for this rare cancer, Tom McGahy raised over £2,000 during his recent Haircut Fundraiser.
We’ve been staying in touch with the McGahy family, and mum, Helen, has provided us with an update on how Romy is doing, which you can read below.
You can also follow Romy’s journey via this special blog.
“Romy has completed over 15 months of intense treatment now, and although the end is in sight we are still only looking a day ahead or a week at the most, because it’s impossible to plan further in advance. Things can change so quickly, particularly with neuroblastoma, which is notoriously hard to treat and has one of the highest rates of relapse of childhood cancers. Romy is currently in the immunotherapy phase of her treatment, which is the ‘easier’ part of treatment but also the longest, lasting over 6 months, and which hasn’t been without its difficulties.”
“For each cycle of immunotherapy Romy is attached to a balloon pump which she wears in a backpack, infusing an antibody 24 hours a day for ten days. This is then followed by 14 days of a very strong oral medicine which is normally very straightforward and which we can administer ourselves, but this particular medicine has caused some toxicity to Romy and she required a dose reduction to alleviate some of the issues.”
“Following the oral medicine Romy has a gap of about a week between each cycle with each cycle repeating every 35 days. The most recent development has been that Romy has started to eat a little. This has been the first time in the whole of her treatment that she has eaten anything, bar a week last year where a medication she was on gave her an appetite, and her body has had to get used to proper food again, together with the liquid feed which she receives down her nose tube.”
“There continue to be little hiccups along the way, including visits to A&E whenever Romy spikes a temperature, but there have also been lots of visits to parks and the odd trip out. The chemotherapy has caused Romy to be very susceptible to the cold and we have been struggling in the winter weather to avoid chilblains. This is just the first ‘late effect’ of many that she will face in her life due to the harsh treatments she has received.”
“But throughout the relentless treatment schedule Romy continues to be resilient and inspires us all to carry on and get through each obstacle we face. We hope that International Childhood Cancer Day will help to spread awareness of childhood cancer, something that everyone thinks of as rare but remains the leading cause of death for children in the UK. Sadly childhood cancer remains underfunded and neglected in comparison to investment in adult cancer research.”