Gavin's story so far..

On the 12th October 2011 Jayne noticed a small lump on one side of Gavin's bum cheek while changing his nappy.
Unsure what it was Jayne took Gavin to our local doctor. He advises he thought it was a “haematoma” which is a bruise and told us that he would prescribe some cream which should bring the swelling down.
Unhappy and unsure about his diagnoses we decided to seek a 2nd opinion and brought Gavin to another doctor. She told us that she was unwilling to diagnose what it was as she was unsure, and advised that we take Gavin to Crumlin hospital for further investigation.
So we took Gavin to A&E at Crumlin Hospital. We arrived about 3pm and after being seen by 3 doctors they were still unsure what the lump was.  Gavin had 2 x-rays that night but they wanted him to be seen by the surgeon on call.  After examining Gavin, he advised we should be admitted for further scans.

Wednesday 19th October - Gavin had an ultrasound which showed a mass in his pelvis area. 

Thursday 20th October - Gavin had an MRI & CT Scan to investigate further what was happening. We met with a consultant from the Oncology Department called Dr. Michael Capra . He and a surgeon called Mr Sri Paran then came back and advised that the lump we found was in fact a tumor. But that’s not where it had originated from.

After further investigations they found the tumor had originated in Gavin's Pelvic area and then the mass had grown and pushed down further...this is where the bump appeared.
The scans showed there were some spots on Gavin’s 2 lungs- this meant that the cancer was aggressive and had already started to spread. Could the news get any worse..Our world had just caved in...nothing would ever be the same again..

On Friday 21st October Gavin had his Hickman Line inserted- (A Hickman Line is a wire that comes out of Gavin's chest that is used to administer chemotherapy, take blood samples, or give anaesthetics. Essentially a semi-permanent cannula, giving access to the blood stream. 'Freddie' is the term used for/with children in Crumlin Hospital) and also a biopsy was taken of the tumour to see what type it was.

We were told we could go home that afternoon and await the results of the Biopsy. That weekend was the longest wait of our lives...On Monday we would find out what type of tumour Gavin had and also what we would all be facing..

On Monday 24th October we met with Gavin’s Consultant Dr. Michael Capra. He advised that he had some results back and told us to take a seat..(U knows its not good news as if we didn’t have enough already...)

Dr. Capra confirmed the tumour was called “Rhabdomyosarcoma - a childhood cancer of the muscle. In his case it's in his pelvic area”) but it was also has spread so it was very aggressive and would need to start very intensive chemotherapy A.S.A.P.

The mass of the tumour was 5 x 7 cm which is massive in a child Gavin’s size. It was too big to remove at this stage so Michael advised to try the intensive chemotherapy in the hope that it would shrink to a size the surgeons could remove it. Dr. Capra advised that this type of tumour was very very rare, to put it in context in the US 200 kids a year have been diagnosed with this. So in Ireland Gavin is one of 3 kids.

We were then moved down to St. Johns Ward which is the only Paediatric Cancer Ward in Ireland. Our Darkest fears had become reality. Gavin had cancer...Our little baby. Words cannot describe the thoughts that went through mine and Jayne’s mind over those first few days, weeks and months. All we knew is no matter what we had to do or where we had to go we would do everything humanly possible to cure Gavin.

Ok back to the story...
St. Johns what an eye opener. Yes I had heard of kids with Cancer before but I don’t think I had actually seen any.
St. Johns Ward is the furthest Ward away from the main door in Crumlin Hospital; many parents of kids being treated there have counted the steps it takes. The first few days were the hardest, you could tell the parents and kids that had been treated in St. Johns ward for a while as they were all so used to everything, whereas us newbie’s had the “shock look” and it was very apparent that we had obviously just received the news about Gavin.

On Tuesday 25th October Gavin started Chemotherapy. For the type of Cancer that Gavin has Dr. Capra advised that 3 different types of Chemotherapy would be used as this is what they know works with this type of tumour. Then Michael explained all the side effects that may happen with all these types of chemo. We didn’t really have any option but just hoped and prayed that none of them will ever happen.

As days went on we spoke to other families and they shared their stories with us which was very shocking but also very hopeful.

We now had an idea what was in store for us and Gavin. Gavin’s consultant Dr. Michael Capra was assigned to us from the start (he gave us the news about Gavin with the surgeon Mr Sri Paran.) He told us no matter what he will always be honest with us and anything we ask him he would tell us. At the time we wish he had not told us everything but knowing what we do now we are so grateful he did. Jayne and I really needed to know what we were facing no matter what..  It was very hard to be told that there is no guarantee that the chemo would work or that Gavin may not have a good chance but as Michael told us we will try our best..Wow talking about a gulp on your throat...bit of an understatementJ

Since then Gavin has received 8 full rounds of Chemotherapy drugs every 21 days. The procedure involves Gavin being hooked up to an IV Drip system where different Chemo drugs and fluids are passed through the drip into Gavin’s Hickman line. The total amount of time is 42 hours. That’s 42 hours hooked up - long time for a toddler. But it has never stopped Gavin for being the happy most strongest person, never mind child, I have ever seen in my life (Thank God for that)

Gavin would be hooked up the chemo drip and then want to go play in the playroom in the ward. Also want to go up and down the corridors in a small car or tractor.

Monday 19th December 2011 Gavin had another MRI and CT Scan. This was the biggest and most worrying day since Gavin was diagnosed. The results of these scans would show if the last few months of Chemo had been working.

As with most of the scans we knew that it would take a few days to get the results. A very long time in our minds but just a few days to wait. Since it was so close to Christmas it was very hard to be upbeat especially with Conor and Lucy. God love them they have been so good through all of this all we wanted was to get good results and turn the corner of always getting bad and worse the waiting began.

Thursday 22nd 19.30 PM Dr. Capra called..To say I was sweating was an understatement... He told me straight away that we had good news...The scans showed that the spots on Gavin’s lungs had disappeared and the main tumour in Gavin’s Pelvic area had reduced by 50%.....I cried....and then opened a bottle of champers....Right then I knew Gavin was going to be ok....but there is something else that happened over the few days.

Millie my first baby (our Rottweiler dog) had been limping over the weekend so I took her to our local vet. With everything that was going on I left her a day or 2 more than I normally would. When I was driving her to the Vet I noticed a lump on her leg. I hadn’t seen it before. When I brought Millie into the Vet I explained what had been happening and showed her the lump. She looked very strangely....I then said “now don’t you tell me that Millie has a tumour too...” she said I’m not sure Ill have to run some tests... for the scary bit. Also on Thursday 22nd at 5pm our Vet called to say she had some bad news. Millie had a Cancer Tumour and would have to be put to sleep...How much of this bad news can anyone take....anyway there was no way of treating Millie it was too far gone so I had to agree and went straight to the Vet and said my goodbye to my wonderful dog.

For all you superstitious people out there call it what you want. But I believe Millie took the tumour away from Gavin...there is no other explanation...God works in mysterious ways and we now all agree that “Millie took the hit for Team Gavin”

Ok to finish off cause I could go on forever...haa.haaa

13 weeks ago Gavin had surgery to remove the tumour. Everything went amazing thanks to Gavin’s surgeon and his team.

We couldn’t have got where we are today without the help and support of all our family and friends and also all my work colleagues at Rabobank Ireland & ACCBank. (Nick and Declan thank you both so much) They have all been so amazing to me and all our family we cannot thank them enough. Also Eileen Horan from Greystones Cancer Support thank you so much for everything.

We also have to thank everyone that has being praying for Gavin and us, please continue as all the prayers, no matter what your religion is, the prayers are working.

Dr Michael Capra and his team in St. Johns Ward are unbelievable...Frieda, Jane Garland, Mary O'Rourke our social worker, Sinead, Sarah and Grainne and all the nurses; Mr. Sri Paran and Michael - the surgical registrar have been amazing thank you for everything you have done so far.

And now the next stage of our journey begins....Proton Therapy in Switzerland.

1 comment:

  1. Jesus Christ ..... Talk about not breathing while reading all that John .... Lump in my throat , tears in my eyes & my heart beating so fast ..... I'd love a double G&T right now !!! U guys r amazing so no wonder Gavin is who he is and is doing so well ..... This story just gets better and better as time goes on .... See u when u guys when u get back at the weekend x