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

We are now outpatients wooohoo

Just to let you all know we got discharged from the hospital yesterday wooohoooo. They are happy to let us leave and for Gavin to start his recovery outside of the hospital. He still has a tear in ureter and bladder, so he has 3 drainage bags on until they heal. We have been trained up on how to manage them ourselves.

We have a job to do and build him back up now to his old chubby self again, but we can do this much better outside the hospital.

We have also just moved into a rented apartment, which is close to the medical center so we have a bigger space.
And the best news of all is that Conor and Lucy are coming over this Friday…WOOOOHOOO. Jayne’s sister Deborah is flying them over.

We miss them so much. It’s been nearly 6 weeks now, and even though we speak every night, it’s just not the same. We cannot wait to see them, my god they will be killed with love and hugs they will not know what hit them:)

So the plan for now is to have regular visits to the hospital for checkups and check how Gavin's bladder and ureter are healing. We cannot start his chemotherapy until they are healed better. We are unsure yet if he will require more surgery to fix them.

So at long last we are now on the road to recovery and, more importantly, back on the road home to Ireland.

We are missing everyone back home a lot especially all our friends and family, but we are being well looked after by our extended Houston Irish and Police families, they are amazing support to us.

Gavin when we told him we were leaving the hospital

Gavin and me chilling in our apartment  

Childhood Cancer

Childhood cancer

Our children are our angels,
A true gift from up above.
From the moment that we see them,
Our world is flooded by love.

In life now all that matters,
Is their safety and their health.
Not everything that came before,
Like sleep, nights out or wealth.

Then suddenly from out the blue,
A bolt falls from the sky.
Your family life just falls apart,
And you can't help wonder why?

An existence you knew nothing of,
Suddenly , becomes the norm.
You forget what life was like before,
You walked into this terrifying storm.

You sit beside your baby,
Feeling helpless as can be.
As nurses fight to help them,
And you pray a silent plea...

Why is this happening?
What can I do?
How do I take this pain
and suffering from You?

The truth is there's nothing,
We as parents can do.
But support and gain strength,
From the childhood cancer crew.

For many their battles,
are far too relentless and long,
As they pray that they will one day,
Be free from cancer's evil throng.

We are thankful for survivors,
Those children who've won the war.
But we remember those who fly high above,
through the skies they soar.

There's many that still believe,
that "this won't happen to me!"
But the day before my child was ill
I too had failed to see...

That childhood cancer happens.
It doesn't care, who it strikes next.
But please be aware of its poison,
And it's poisonous effects!

These children and their families,
Fight their battles hand in hand.
We will one day discover a cure,
And united we will stand!

Not an easy week for Gavin

So much can happen in a space of a few hours and days..
After our last update of Gavin walking in the hospital he became unwell.

His tummy became swollen again and we didn’t know why. The medical team checked Gavin and found that there was a problem with one of the tubes that was draining the urine from his bladder. This caused a build up of urine back into his urethra and then spilled out through a small tear into his stomach.
The pressure caused Gavin to not breath properly and this then caused fluid on his lung.
As you can imagine, we became very scared but the medical team dealt with it as soon as they could.
Gavin was then scheduled to have an operation on Monday to place a tube into his lung and also into his stomach to drain of the fluid and urine that had built up.
We were upgraded again into the ICU department so they could keep a constant eye on Gavin.
All week the new tubes have been removing fluid but the medical team thought it would be better to drain off the urine from the kidney which would give his tummy and urethra time to heal, so today Gavin had another procedure to insert a tube into his kidney called a “Nephrostomy”. This was done today at 4pm and Gavin is now comfortable. He will have a few tubes now until everything is back working as normal again.
It has been a huge rollercoaster week for us and not something we, or anyone thought would happen but it did. But we hope we are over the worst of it now so back to Gavin’s recovery and building him back up and walking again.

We have had lots of support this week from our Irish friends in Houston and the HPD (Houston Police Dept) who have been in to check on Gavin ever other day so that has really helped us.

And today we received some cards and presents form home which couldn’t have come at a better time.
Below Gavin’s new Fairy Door from (The Fairy Door Company in Ireland), which he named “Max”, arrived and is a great addition to his hospital room. He also got some lovely get well cards (one from his girlfriend Niamh which made him smile ) and 2 massive posters that a man called Joseph Mc Corvey dropped in.
He put all the get well wishes from his friends all over the world sent to Gavin on a poster…it’s really amazing to see where people are sending message from. Lots of love in the world for our SuperGavin we really appreciate it.
We are all looking forward to watching our friend Conor Mc Gregor win his fight tomorrow, that will put us all in good spirits

look who is up walking around..

Look who's up walking….Over the last few days Gavin has increased from 20 steps to 50 steps and then today walked all the way to the playroom and also most made it back again. He is still very sore but we need to push him a bit now to get up and moving. We knew he could do it, and he sure did.
They have started Gavin on IV Food now too which is getting pumped directly into his tummy and he is taking it very well so tomorrow we will try introduce some solid food in small pieces and see how that goes.
The medical team are very happy with his progress and recovery so far which is great news. They took off his dressings yesterday so we have seen the stitches down his chest. It is big but very clean and Gavin doesn't mind it.
Every day he is getting stronger and stronger and by next week he will be running down this corridor.

The last picture shows a bell in the Children's Cancer Ward, its just brilliant and cannot wait for Gavin to ring it.

Miracles do happen..

We are in ICU department now with Gavin. We are so happy to share some good news with everyone for a change.
The Amazing Surgeon Dr Hayes Jordan and her team were able to remove both tumors from Gavin's pelvis and also preform the HIPEC Treatment as planned.
We had been told that Gavin's bladder and Colon would have to be removed and he would have 2 permanent bags but when they went in they were able to get them out without touching the bladder and colon.
We really believe what has happened today is a miracle and it is down to everyone's prayers and positive thoughts being answered for Gavin and the medical team involved, for that we cannot thank everyone enough..
We still have a long road ahead in the coming days and weeks and months to make sure everything is gone for good but for now everyone should know how happy we are and it is all with your help, donations, support,
Prayers and positivity that our boy Gavin is with us today. Thank you to each and every person...sending you all our love and thanks John, Jayne and SuperGavin.

Just before going into Operating room

Resting in ICU after nearly 11hours operation

Our last night together for a few weeks

Well Gavin has just gone asleep, this will be our last night sleeping together for the coming weeks.

The last few days have been hard as Gavin has had some pain. We found out from the MRI scans that the tumor has grown since we were at home and is pressing against his bladder and nerve on his leg, so this has caused a lot of discomfort over the last few days.

Tomorrow we will be admitted to the hospital for 8am, and then Gavin will need to drink 2ltrs of a solution which will clear out his system in preparation for surgery on Tuesday morning.

We have been told that the surgery is now more complicated than we first thought and will take between 10-12 hours. Jayne and I will take turns staying with Gavin every night and both of us will be with him every day. He will be in ICU after the operation for at least 1 week.

We have some long hard and scary times ahead of us but we will be strong for our little Superhero Gavin. This is his and our biggest battle so far and we will win…

We know we have everyone behind us which gives us massive strength to battle the fight ahead.

We want to thank everyone your kind messages and support at home and in Houston everyone has been amazing to us.

Please keep Gavin in your prayers and thoughts over the coming days and we will update everyone once he returns from surgery.

Sending all our love, TeamGavinGlynn all the way… John.

Kisses from Gavin (after having a blue Candy Floss)

Not a good day today

Well today didn't go as planned…

We had arranged a day with the Sheriff Department with Gavin but when he woke this morning he wasn't feeling well. His stomach was very bloated and as the morning went on it just got worse and worse. He had serious pains and was screaming and crying which isn't like him at all. 
We ended up taking Gavin into the emergency room as it got so bad .
They kept us in for the day and took some X-rays and it seemed like a build up of gas, sounds crazy my god he was in so much pain we didn't know what was wrong with him. It could also be from all the new food, So we got some medicine now for the next 48 hrs which will hopefully get rid of it and the pains. 
Tomorrow we meet the Surgeon to discuss the plan for next week.

Jayne trying to keep Gavin's mind off the pain

Gavin fell straight asleep after his X-ray 

MRI and X-Ray today

We had a rough night last night before we even got up. Gavin woke about 3am looking for a bottle and a drink but we couldn’t give him anything as he had to fast from 12am. He wasn’t happy at all and it took a long while for him to settle back down again. We hate not being able to let him drink or eat especially when we are trying to build him up as much as possible for the coming weeks procedures.

Then we were up at 6 am, as we had to be in the hospital for 7am for our first appointment, then down to the MRI department for 8am.  We tried to entertain Gavin as much as possible to keep his mind off thinking about food or drink, very hard but we are used to it now.

Only one of us could bring him into the MRI room so we normally take it in turns so I went in today. Gavin was great and knows the “milky medicine” will make him go asleep, he doesn’t mind it, and actually he likes it, which is a bit scary.

He took out his Central Line himself and gave it to the anesthetist, and within 30 seconds he was asleep. I held him in my arms and just spoke to him until he was fully under then gave him a big kiss and told him I loved him.

Gavin was under for about 1:45mins then he was in recovery for another hour. He was very groggy when he woke and took a long while to come full around. He also had to have an x-ray on his chest. Then we got back to the hotel about 3pm.

Since he was so good after a really hard day we went and got him some presents.

2 more appointments tomorrow but we should be finished by 1pm which will be good as there is a surprise in store for Gavin tomorrow…. he is having a visit by some of Houston’s finest Police Force.

Bit of messing before Gavin's MRI

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Gavin in recovery

Gavin's present, a LAB kit..The next big Cancer Pathologist I think