superhero in the sky

One year gone today.
Though we are all still grieving and missing you ever second of the day their is one thing that will never be taken from us.. And that is the memories of all the happy times we had together. All the smiles and laughter your brought to us all.
We all miss and love you so much buddy. Forever in our thoughts, hearts and dreams.
You will never be forgotten.
Love you buddy. Mum, Dad, Conor & Lucy xxxx.

Big thanks to Robbie Doyle for writing and singing this beautiful song about Gavin (Superhero in the Sky).
Thank you mate xxx

https://vimeo.com/142997405Superhero in the Sky

The Gavin Glynn Foundation Office

The Gavin Glynn Foundation office is coming together..

Big thanks to Nigel Elliott for converting Gavin's old bed into a desk. 

The bed was made for Gavin a few years ago by John Killilea through Aoibheann's Pink Tie and we didn't want to get rid of it.

We're So delighted with how it has turned out. 

Our buddy will be with us all the way while we help as many families as we can. 
Now to buy office stuff

We wanted to thank everyone who has supported and helped Gavin and our family in 2014 and especially over the last few months since Gavin has passed.

Christmas will not be the same for us this year and I don’t think any festivities or anniversaries will ever be the same again, but we know if Gavin was with us it would be filled with laughter and joy and happiness. Conor and Lucy are now doing a great job of keeping us going and making us smile.

We hope 2015 will bring much happiness. We have some very exciting and busy plans ahead in setting up a foundation/charity to continue Gavin’s Journey, and we hope that we can count on all your support so we can help other children and families with cancer.

So in Gavin’s memory we would like to wish everyone a very healthy and Happy Christmas and New Year.

John, Jayne, Conor, Lucy and Super Gavin (shining down his happiness from above).

Monday- Start of a new week..

I thought I would get back to writing the blog again as it really helped me vent and tell what was on my mind while Gavin was in treatment.

The last few weeks have not been easy on any of our family. In the last 7 weeks we have lost my uncle, Gavin and then last week my aunt (who was married to my uncle who also passed) all to cancer... and all on a Tuesday, which is bizarre..

I think we have all had our share of people passing for now.

How do I feel, a few words come to mind. Lost, Sad, Empty, angry, denial...and many more. 

We go to see Gavin every day, and every day I just stare at his grave and cry and wonder why and how this has happened and I know I may never have these answers but I will still keep asking them.

I know we must pick ourselves up and continue on that is what Gavin would have wanted. He hated anyone being a "wuss" as he called it...:)

Going out and meeting people is hard because some people don't know how to react around you. I know I am probably guilty of this myself in the past but we have now analyzed people’s reactions to our family and my extended family. 

• People Tilt their heads to the side when the see you or talk to you. 
• "Are you sleeping"... 
• "Are you eating"...
• Rub your arm or back for some reason while talking to you with their tilted head.

So my advice to people going forward no tilty head or rub arms (you know what the answers to the questions are so please don't ask)...

Last week Lucy woke upset one night and was crying saying she didn't want to go asleep, as she was afraid she wouldn’t wake up just like Gavin. Jayne and I explained that Gavin was very sick and not to worry but we felt so bad she had these thoughts. We all speak about Gavin as much in our daily lives and so do Conor and Lucy who we hope will help but we will keep a close eye on them from now on.

It is very hard to try and keep busy since all our time was hospital or caring for Gavin. What was normal life that is the big question as the last 3 years have been so full on. 

For now I try and plan out daily tasks even 1 thing that needs to be done, that way I can keep focused.

Jayne and I have decided to start back training this week, which will help us both mentally, and physically in time...

We are also going to continue in Gavin's name and his legacy of helping others, which will be amazing. 

All we can do is take 1 day at a time, and see what it brings. We have many challenges ahead that's for sure but we are not alone, we will never be alone, we have one very bright star shining down on us that’s for sure.

Sleep well buddy, we all love and miss you so much

xxxx

We didn’t get a chance to thank everyone last week, but we now wanted to acknowledge how amazing you all are.

As we now know Gavin’s mission was to bring happiness, strength, courage and to “never ever give up” and most of all to bring people together. We have seen all of this through our journey and the places it took us to get Gavin the best possible treatment at home and abroad.

We would like to thank The Laura Lynn foundation and The Irish Cancer Society night nurses and the local Palliative Care Team for being there and helping us while Gavin was at home over the last few weeks.

To all our dear friends and family, you have been such a great support for the last 3 years.  To the amazing hospital staff, both here and abroad who looked after Gavin.  To the community of Kilcoole, Greystones and Ireland, the love and support that was shown last Friday from when we left our house in Kilcoole was breathtaking. From all the yellow and gold ribbons to the schools and children and adults that lined the streets, to An Garda Síochána for your professionalism and respect towards Gavin, Greystones Fire Brigade who Gavin loved so much, Mr. Willie Doyle who made the whole process of the funeral arrangements the most hassle free process and most beautiful, to Christy and Conor for decorating Gavin’s coffin in his superman sign, our extended new family in Texas and Florida we thank you, and last but not least Aoibheann’s Pink Tie…You have been there all the way and continue to be our rock. We love you all xxxx.

We will now take time to ourselves, and then we will come back and continue Gavin’s Legacy … whatever that may bring….

Rest in peace our beautiful baby

Rest in peace our beautiful baby. You fought the hardest fight anyone could imagine and all the way to the end. You are and will always be our Superman. Gavin passed very peacefully tonight with Conor, Lucy myself and Jayne holding hands on our couch at home. Fly high buddy we all love you so much xxxx

4 weeks back in Ireland this friday

It's hard to believe that this Friday we will have been back home in Ireland 4 weeks.

So much has happened but it still feels so weird being back. Its great to have family and friends around again which has been a great help to us in the current situation. 

Today we got to leave Crumlin for a few hours so we were able to bring Gavin home. This was the first time all 5 of us have been under the same roof in a very long time…Being in the same room and having dinner together was just amazing. The things we have all taken for granted before now all seem such a luxury and just make you realise how precious all these moments are.

Long days and nights in hospital have really taken it toll on us for the first time in nearly 3 years since Gavin was diagnosed.. we are wrecked. Sleep or lack of it really is a form of torture. The normal routine at the moment is one of us stays with Gavin every night, a couple of feet away from his bed. As many other parents will know that have had to spend time in hospital is that you just don't sleep. Between the BEEPS of the IV Monitors or nurses checking your child you have to be semi alert in case your child needs you. Also the sleeping arrangements change from ward to ward. We have a lazy boy chair which is luxury compared to what some other rooms and wards have. Some parents sleep on the floor with a so called 'mattress' (which is about 3" off the ground) or in a chair beside their child. But to be honest if I had to stand in the corner on one leg I would do it just to be beside Gavin. Steve Jobs will never know how much he has made people lives easier:) thank god for iPads and Netflix thats all I say…

So we rotate every other night to go home to our house and have a good night sleep in a bed and spend time with Conor and Lucy and my god is that good….I'd say it takes me less than 1 minute to be fully asleep once my head hits the pillow.

I read something a while ago that said you can never catch up on lost sleep no matter how long you sleep for when you can, I really believe that now…

But if you wake during the night it is hard to get back again. You head plays havoc with you, well mine certainly does. No matter how much you try and re focus on "happy thoughts" the bad ones still seem to win over. 

Last week 2 children who were patients in St. John's Ward lost their battle with Cancer. One was 14 and the other was just 6 years old. I also lost my uncle to cancer last week so overall you could say that it was a bad week.

Cancer effects us all, nobody is immune to it, no family has not had someone either treated or lost to it. 

It still baffles me every day the amount of money spent on research worldwide and their is still no cure.

Are we getting closer I really hope so…

So tonight I sit here, back writing the blog again, pondering on the last few weeks and months. Gavin is happy watching some movies, what time he will sleep or I will sleep is anyones guess, but whenever I will close my eyes I know that I am thankful for a great day today with my family and pray Gavin, Conor Lucy & Jayne will sleep well tonight and whatever tomorrows challenges brings we will face them together, as a family…and as a team.

As comedian Clive Allen always said 'Goodnight, and may your God go with you'

Update on Gavin

Sorry for not updating everyone, we wanted to wait until we were back home and settled.

We arrived back home 2 weeks ago today. Once Gavin was comfortable after his operation in Arnold Palmer hospital, the staff and Make a Wish arranged an air ambulance to take us back home. Gavin was very happy to travel in a plane in his bed and was very comfortable all the way home thanks to JET ICU for the great trip. We were so well looked after by all the doctors, nurses and play specialist staff in Arnold Palmer and have made many friends so we thank you all for your help during our stay.

We were then picked up in Dublin airport by BUMBLEance and brought to Crumlin hospital with Gavin’s Gardai friends in front as they wanted to welcome him home. We have spent the last 2 weeks in the ICU Ward as Gavin had another operation last Monday. The surgical team and all the nurses have been amazing and really looking after Gavin very well.

We are now out of ICU and in another ward. Gavin is in great form as always and doing well. He is sitting up watching lots of DVD’s and keeping all the nurses entertained and me and Jayne…bossing us around which is great to see.

The plan now is for the surgical team to monitor Gavin over the next 10 days and see how everything is going and then hopefully we will be able to go home.

 As always Gavin is surprising everyone with how strong and resilient he is.  Thanks so much to everyone for all your messages and prayers keep them coming and our little SuperHero will be back flying around again soon.

“We would ask that any online or press media to be mindful of what quotations you print please as we need to be careful of Gavin’s brother and sister and what they can read”.

 

Update on gavin

After being admitted for an infection last week, Gavin had a scan which showed new tumour growth in his pelvis and also in his lungs. 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 aggressive new tumours have already grown rapidly and have caused blockages in Gavin's abdomen.
We travelled to Orlando on Sunday 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 has had surgery and is currently recovering in ICU.

We are not sure how long he will be in the hospital but our aim now is to get him well enough to travel home to Ireland.

Once we know what is happening next we will be able to update everyone again. Thanks everyone for your support and prayers.

Calling for people to join TeamGavinGlynn for this years Dublin City Marathon

Team Gavin Glynn are taking on the DCM for the third year in a row. This year more than ever we are looking for support and looking to runners to join the Team for the DCM and run, walk or crawl around streets of Dublin this October. Hard to believe Gavin is only gone 4 and this will be his third marathon in support of his fight….

Gavin as you know is undergoing extensive life saving treatment in the US at the MD Anderson Centre in Texas, while Gavin is doing what he does best and kicking cancers ass, he still needs continued support on his own marathon road to recovery. It literally is a case of it being a marathon and not a sprint unfortunately, with more chemotherapy, more scans and regular quarterly appointments back at MD Anderson once the guys have come home.

So if you are planning or even contemplating taking part in the best marathon in Europe that is the Dublin City Marathon this October and want to support a real life Superhero in the process please get in touch, we would love to have you on board Team Gavin Glynn.

Team Gavin Glynn DCM 2014!!

Email: pegmanlynda@gmail.com, robmoran77@gmail.com, phelim.lynch7@gmail.com

Text: Lynda (0879823516) (Rob) 0863850129 (Phelim) 0834477933

Leaking Tube

While changing Gavin's dressings yesterday we noticed one of his tubes was leaking..So we called the hospital and also showed them a video we took of the leak.
So this morning early start 6am we were all up and into the hospital. Gavin had to be sedated so the tube could be replaced so he had to fast and no liquids from last night.
He's all good now and just about to leave he's happy that his super brother and sister are here minding him.

Gavin's BodyGuards:)

Awake and all ready to leave