About Gavin’s Journey & TGGF
Gavin was diagnosed with a rare form of cancer known as Rhabdomyosarcoma on 19th October 2011 at the age of 18 months old. He had a small lump on his bum cheek which we then found out was a large tumor which was covering his whole pelvic region and had also spread to his lungs. Rhabdomyosarcoma is a cancerous (malignant) tumor of the muscles that are attached to the bones.
After 6 months of intensive chemotherapy in March 2012 they were then able to operate and remove the tumor, which was amazing news but the chemotherapy alone was not enough to stop it coming back. Gavin would need radiation treatment as a follow up to help kill the remaining cells.
Since Gavin was so young normal radiation treatment could not be an option as it would cause too much damage to his internal organs so our consultant sent Gavin’s case file to a treatment center in Switzerland who specialize in a precision radiation treatment called “Proton Beam Therapy”.
We then were sent to Switzerland for Proton Therapy treatment. He had to have 28 sessions of this radiation every day, so the whole family moved over there for 8.5 weeks. Gavin had to be sedated with a general anesthetic every day for this. The treatment was covered by the HSE which was great, but we had to fundraise for our flights accommodation, travel and food/living expenses. As you can imagine Switzerland is not the cheapest of countries but we were very fortunate to have a lot of friends and family who raised about €16,000 to cover these costs.
When we returned to Ireland there was more planned chemotherapy until April 2013, but unfortunately we found out the day before Gavin’s 3rd birthday in May that the cancer had returned. Since Gavin had already received the maximum dosage of Proton Beam Radiation he could not have this again. Our consultant sent Gavin’s file to a treatment center in France who specialized in another type of radiation treatment called “Brachytherapy” to see if Gavin would be a candidate. They came back 5 days later and told us that he was not. This was not the news we had hoped for.
Our consultant told us that there was nothing else could be done now, but we did not accept this answer. Gavin was very active at this stage and was running around like any other normal 3 year old – apart from having cancer.
We dedicated all our time into researching other options. I was contacted by another parent from the UK who’s son had also relapsed from the same tumor as Gavin. Their son had been treated with brachytherapy in a hospital in Amsterdam called “AMC University hospital”. We contacted them and sent all Gavin’s medical files and MRI/CT scans and ask them to review his case.
1 week later they asked to see Gavin for an evaluation.
We flew over and stayed for 5 days and the team conducted a number of tests and then advised us he was a candidate for brachytherapy. As you can imagine our joy at now knowing we had some hope. We came home and arranged to meet our consultant in Crumlin and advised on this option and then they planned for Gavin to have surgery and then brachytherapy.
Gavin had 2 surgeries in 7 days and 32 sessions of radiation (brachytherapy) over 72 hours.
We stayed in Amsterdam for about 3 weeks until Gavin recovered and then returned to Ireland.
Once Gavin had recovered we started more chemotherapy in Crumlin until February 2014. Gavin had a routine MRI scan and this showed the tumor was growing again. Our consultant told us nothing else could be done and that nobody could operate to remove the tumors.
Again we got back to investigating and researching. We spent as many hours a day as possible on the Internet and finding out about the best hospitals and surgeons and treatment centers in the world in hope that someone could offer us some options. We sent all Gavin’s medical records and MRI/CT Scans to a number of top US Hospitals. I created alerts on Google and any Cancer related medical site so I would know if any new treatment or medical procedure had been created for Gavin’s type of tumor and history.
We received an e-mail from MD Anderson in Houston Texas to advise that there may be a treatment and surgical option for Gavin. The treatment would involve surgery and then heated chemotherapy inside Gavin’s pelvic and abdomen region. This type of treatment was very cutting edge and had only been done on 80 other children with different types of tumours.
We asked our consultant in Crumlin what his thoughts were and he advised us against it. We asked him what other options we had and he said “None and to enjoy the time we had left with Gavin”.
We could not stand back and watch our 4 year old beautiful boy just die so we told him that some hope is better than no hope and we would proceed on our own.
We then had the added pressure of paying for the treatment in MD Anderson. We were advised they would need a deposit of $25,000 up front and then $350,000 for the treatment.
As you may know with the help of some amazing people and the support of the nation we raised all money required for the treatment.
We brought Gavin to Houston for some testing before the procedures could go ahead.
They conducted numerous MRI/CT scans and other tests. 2 Days before the planned surgery we were told that the tumor had grown since the last scans in Ireland 4 weeks previous and that it was now pressing against Gavin’s bowel and bladder. The surgeon advised that they have to remove both organs. Gavin underwent a 12hr surgery to remove the tumor and have the heated chemotherapy. Everything seemed to go very well. They did not have to remove anything else apart from the tumors.
About 3 weeks after the surgery Gavin started to have complications and more scans revealed the tumor was growing again. The whole medical team in MD Anderson were in shock and very upset that this had happened. The team believe that there must have been microscopic cells growing / hiding in his pelvic bone and his lungs, that were totally undetectable by the MRI or CT that he had immediately before his surgery. Obviously, had these been identified prior to surgery, the team would not have proceeded with the surgery and HIPEC treatment.
These new tumors had already grown rapidly and had caused blockages in Gavin’s abdomen. We travelled to Orlando as Gavin was granted a trip to Disney World for the family, by “Make a Wish”. But unfortunately he had to be brought by ambulance to the Arnold Palmer Hospital in Orlando before we could get to the park, with abdominal complications. He had to have emergency surgery as the new tumor growing was blocking his colon and bladder.
We stayed in Arnold Palmer Hospital in Orlando for 3 weeks until Gavin was stable so we could fly back home to Ireland.
We went straight to Crumlin hospital where Gavin was cared for until the team told us that there was nothing else that could be done. We brought Gavin back home where we cared for him until he passed on the 21st October 2014. Gavin’s Cancer was very aggressive, as you have seen from the above documented journey. Gavin never gave up and fought all the way until the end. Gavin lived life to the full in the small amount of years as you can see from all the pictures and videos on our website. He always smiled and laughed and brought strength and happiness to us all and everyone who met him.
In summary our lessons learned over the past 3 years:
1: Information is power and early decisions have enormous consequences
2: 2nd 3rd or even 4th opinions from other consultants are required.
3: To never ever give up hope.
This is why we have created The Gavin Glynn Foundation.