Friday, September 27, 2013

What an amazing day today "Go Gold For Gavin"

What an end to Gavin's first week back on chemotherapy in Crumlin...
Jayne's sister Deborah who's is a teacher in Loreto Secondary School came up with an idea and approached some schools and Montessori around the local area to see would they like to take part in a "Going Gold Day for Gavin".
The response she received was amazing and it spread wings very quickly to all the below.
All the kids were asked to wear something yellow/gold today.
Most people know that the Pink Ribbon signifies breast cancer which is amazing but so many people do not know that the Gold Ribbon is for Childhood Cancer..
But after today I think a lot of people will now know what it means..
Ms Eileen Jackson who is the Principal of St Patrick's NS (where Conor and Lucy attend) took it one step further and asked everyone to vote and donate €2 per vote for a choice of hair colours. Then she would dye her hair that colour and keep it for one week.
And as you can see from the below picture the winning vote was Pink:)
The support we have received from our local community and afar has been amazing and most of all the kids really got on board and seemed to all really enjoy and have a great day.
Gavin popped down with Jayne before going to Crumlin this morning to get a photo with Eileen too.
We will remember this day for as long as we live. Thank you thank you thank you everyone from all of us...TEAM GAVIN GLYNN xxxx
List of all who took part today:
St Patrick's NS
St Kevin's NS
Delgany NS
Powerscourt NS
Loreto Secondary School
Colaiste Chraobh Abhann
Knockeevin Montessori
Flynnstones Montessori
Puroga Childcare
Woodlands Montessori
Lir playschool, Delgany
Sunflower Montessori
Home from Home Creche
Naionra Montessori, St. Patricks
Naionra na gClocha Liatha
Footprints Montessori
Charlesland Grove Montessori
Charlesland Park Montessori
Orahova Montessori
Little Poppets Crèche
Treetops Crèche
Scallywags Montessori
Absolute Beginners Montessori

Greystones Fire Station
Permanent TSB
Stephen Donnelly Office TD
Horse and Hound, Delgany
Greystones Baton Twirlers
Wolfe Tone Baton Twirlers
Glen of the Downs Golf Club
Jayne's Super sister Deborah who arranged everything for today. Thanks Deb
Brilliant picture this morning with Ms Eileen Jackson and her new hairstyle:)
Greystones Fire Brigade

Wolfe Tone Baton Twirlers
for more pictures from today please click below link

Tuesday, September 24, 2013

Superman Gavin does it again

This is a video of our little superman yesterday waiting for his scan with Jayne. And they sent me this video while I was at work....

The reason why I'm posting this is that before we went to Amsterdam we were told that Gavin had some spots on his lu
ngs and our consultant told us he thought the cancer had spread..this as you can imagine was not good but we decided to try forget about it until after Amsterdam.

Jayne was told today by our consultant that he checked the CT scans of Gavin's lungs from yesterday is all clear....

 Miracles do spots on lungs...thank u god xxx and our little hero surprises us yet again...

So this means the re-occurrence of the tumour is in the primary site only and has not spread. This is such amazing news...We are all still in shock and over joyed.

As Jayne said to me earlier " I don't know how to handle good news only bad" well we can get used to this feeling:) 

Monday, September 23, 2013

Back in to start more chemotherapy today

We met with Gavin's consultant on Friday to discuss the new plan.
Gavin will be on 2 different type of chemo called Topotecan & Cyclophosphamide both delivered via IV Drip over 5.5hrs...
He advised us that their is no time limit on this schedule so we will just have to see how it will goes every few months with scans.

We had a great weekend before getting back into Crumlin life again.
On Saturday we had some friends over for a bit of cake to celebrate Gavin return home..better late than never
Thanks to Lisa from Fancy Cakes & Treats for making the below amazing Superman cake it was beautiful.

On Sunday The Gemma Appeal which is a local charity arranged a sponsored walk yesterday for Team Gavin Glynn. It was a beautiful day and lots of people came out and showed support for Gavin.
Click on the below link for some pictures

Jayne started back Crumlin with Gavin this morning. After dropping Conor and Lucy to school they went straight in.

Gavin had a CT Scan of his chest and lungs about 11.30am and then they had to go down to St. John's Ward to start chemo.

Below Gavin taking it easy while getting his chemo. He is back in an isolation room where we will always be going forward. He was tired as was Jayne when they arrived home at 6:30pm this evening, it was a very long day for them both and this week will be tough..

Wednesday, September 18, 2013

"Lets Go Gold for Gavin"

"Lets Go Gold for Gavin"

Jayne's Sister Deborah who is a teacher in Loreto Secondary School in Bray came up fundraising/awareness idea for Gavin.
September is worldwide childhood Cancer Awareness month and Gold is the colour for childhood cancer.
A number of schools and Montessori's in the area have agreed to "Go Gold for Gavin" on Friday 27th Sept. They are having a non-uniform day and asking the children to wear something gold or yellow. We have chosen this colour to try to raise awareness for Childhood Cancer. It can be anything from a yellow t-shirt to a hairband/shoelaces etc!! We are asking for a donation of €2 per child.

The following schools are currently joining in:
St. Kevin's NS Greystones
St. Patrick's NS Greystones
Delgany NS
Greystones Educate Together
Loreto Secondary School, Bray
Colaiste Chraobh Abhann, Kilcoole
Puroga Creche and Childcare
Knockeevin Montessori
Flynnstones Montessori
Greystones Fire Brigade
We are providing all schools with the above posters to help promote the event.

And Eileen Jackson who is the principal of St. Patrick's National School in Greystones has gone a step further and will Dye her hair depending on the highest amount of votes and donations either Silver Stands, True Blue, Nordie Blonde, Hot Pink, Deep Purple or Cherry Red...
If you would like to sponsor Eileen or would like a sponsor card please contact St. Patrick's School

Tuesday, September 17, 2013

Home 1 week tomorrow

It has been so good to be back home again..
Lucy and Conor got such a surprise once the opened the door and seen us standing there..The excitement lasted a good 30mins and then the questions start coming "so are we not going to Amsterdam now" .....Jayne and I knew they would ask this haahaa
We said we will take them away for a day or two in a few weeks to make up for not coming over.
Gavin was a bit cagey to see them at first but once we left Jayne parents house he was chatting and playing with Conor and Lucy again which was so great to see.
We explained and showed Conor and Lucy Gavin's belly and where all the scars are and to be very careful with him for the next few weeks...they are both amazing kids and completed understood and were not shocked by what they saw.

We have just been taking it easy since we came home. We have caught up with most of all out friends and family now also.

On Sunday we noticed some blood in Gavin's urine which didn't look right. He said he didn't have any pain so we waited and checked and by the next 2 it had gone..

Then on Monday morning it was the same again so I took a sample and called our nurse liaison in Crumlin and she advised me to take Gavin straight in.
He didn't have any temperature which would notmally mean an infection but we couldn't be certain.
So in the ward we were back in isolation again since we were outside the country.
They took blood samples and 2 more urine samples. The urine seems to clear in the afternoon which is strange..
Gavin still has a stent inside him called a "double J" -( A thin, hollow tube placed inside the ureter during surgery to ensure drainage of urine from the kidney into the bladder. J shaped curls are present at both ends to hold the tube in place and prevent migration, hence the description "Double J stent".)
So we needed to wait 24hrs to see if anything has grown in the samples, so I called this afternoon and nothing has grown...which means no infection but blood is still there.
They think it may be from the double J tube or post radiation side effects.
It doesn't seem to bother Gavin so we will monitor this over the next few days and hope it improves.
We also have to meet with our consultant on Friday to discuss starting Gavin on a new regiment chemotherapy which looks like it may start next back at it again...

Gavin received the below superman outfit this morning and he was delighted. This came from Aoibheanns pink tie who are amazing charity and support.

Tuesday, September 10, 2013

Day 16/17 and oh yes one small thing were going home...

Tuesday - September 10th 
It was very hard not to post straight away the most amazing news we got this morning..
We had a meeting this morning with Dr de Wilde (surgeon responsible the team while we were here) to discuss Gavin's progress and procedures to date.
He told us that he is very happy how everything has gone so far and is amazed at how quickly Gavin is recovering from the surgeries and brachytherapy.  He then told us that their is no need to stay any longer and Gavin could do the rest of his recovery at home...we couldn't believe it we were so happy and so was Gavin... 
Gavin whispered in my ear "can I give the doctor a hug...I nearly broke down crying..." So I helped him over to Dr de Wilde..I could see he was touched also by Gavin..
We spoke about all that has happen and follow ups to come and a handover back to our consultant in Crumlin. 
Gavin is still very unsteady on his legs and can't walk unaided so hopefully a few more weeks rest at home and he will be back to normal. 

We then came back to Ronald mc Donald house and changed our flights to Wednesday...
Conor and Lucy don't know we are coming back so we can't wait to see their faces.
Jaynes good friend Sharon was over in Amsterdam on business so she popped in for a while to see us too. It was really great so see a familar face again..
In the afternoon weball fell asleep for 3 hrs after the news.
I think all the lack of sleep and adrenaline used to get through the last few weeks is hitting us now..
Just can't wait to get back home now...

Monday, September 9, 2013

Day 15

Another great day today thank god. Gavin finally got the supra pubic tube removed. Woohoo..
Now in saying that it wasn't the nicest experience for Gavin or us as they took it out while he was awake. It tool a few pulls and holding Gavin down...but we had the help of Anna the play specialist too and we would be really lost without her help at this stage. She always shows up at the perfect time and Gabin is really fond of her. From the moment she met Gavin she took the time to see how he reacts to situations and what he likes eg pirates, trucks, arts & crafts etc.
So today she brought some supplies to make a digger and also the Beads of Courage as Gavin had more things done.

We were allowed to leave once Gavin had urinated (they needed to make sure yet again the bladder was working ok)

By 4pm everything was working and we could go and then even better news...we could go and stay in Ronald McDonald house all together once we are back in the hospital for 8am...
Well they didn't even get a chance to finish that sentence and we were in the lift... 

So happy that we can all stay in the same bed/room again together...

Gavin is so happy right now it's just brilliant. He understands about what was happening today and knows its another step closer to getting home..

Gavin and Anna putting on more beads of courage. 

Captain of his ship:)

One happy little man today:)

Day 14 - 2 weeks here today

All good today. Gavin was in great form from the minute he woke but he didn't let Jayne sleep much last night. Seems like a night times now he just isn't settling. He has a nap during the morning or afternoon fine, we just have to go with it for now.
We went for a few walks up and down the ward today. Gavin's legs are very weak but he can hold himself up and walk once we hold his hands. It looks like his legs are drunk so please god we will build him back up to full strenght soon.
Their was no doctor around today so we have to wait until tomorrow to see if they can remove the catheter from his belly.
Today felt like the longest day so far because Gavin was not connected to any drips or medication so their was not too many visit by the nurses either so the day seemed to drag along but to see Gavin in good form was enough.
Hopefully tomorrow tube comes out..

Gavin sitting up too all by himself..

Enjoying the view from the ward.

Saturday, September 7, 2013

Day 13 What an amazing day all round..

The plan in the hospital today was to stop Gavin's Supra Pubic Catheter to see if he could urinate on his own.

Last night he wasn't good, he was in a lot of pain in his groin area and got very stressed out so he had to have a lot of medication to ease the pain.

By 8am he fell asleep for a few hours.

At 11 am the nurse stopped the catheter and increased the fluids to try and see if Gavin could go himself.,

By 1 pm his bladder was full but the pain and fear of trying to pee was kicking in. (Gavin remembered the last time we were in Amsterdam he also had a catheter inserted and when removed was very painful to urinate for the first few times.)

Jayne and I were more prepared today to cope with the hours ahead, as we also tried yesterday but asked to put the catheter back in because it was too much for Gavin. He got very stressed and upset. Something we never want him to go through.

Anyway a lot of praying by 3pm we had lift off...woooohooo

We were so happy and so was Gavin...he knew himself that it was working again and all would be ok..ahhh what a relief.

After having 2 surgeries especially in the stomach area and 2 catheters’ inserted for nearly 2 weeks you can imagine the body just doesn’t know what’s happening.

So we called the nurse in and told her the great news, then we asked could we go out for a walk..and Gavin asked to disconnect his tubes...and then helped as below

Leaving the hospital for the first time.... 

Feeding some ducks

Also at home today was a fundraiser for us Team Gavin Glynn. 2 Friends of ours back home (Lynda Pegman and Sandra Horan) came up with an idea to hold a 2 hr Spinathon in the local gym called GO GYM.

They had about 45 people signed up and we arranged to get t-shirts printed for the day with Team Gavin Glynn Spinathon 2013 @ GOGYM on them

We were able to Skype into the gym to watch it all happening...Well as you can see from the pictures below the energy in that room was electric.

It was very emotional and amazing for us to see everyone that had come down and support and partake in the event. It really shows how amazing people are in times like this..Greystones and Kilcoole especially people have just all pulled together to see how they can help us while Gavin battle is on.
We cannot thank everyone enough for all the really gives us great strength to carry on.

Thank you from the bottom of our hearts.
The below picture summaries today..
Today was a brilliant day for us all...
Everything has been good and will continue to be..



Thursday, September 5, 2013

Day 11

Gavin had the best sleep so far last night. He still woke every other hour but only to see if I was still there and then went back again.
Jayne stayed in Ronald McDonald house so she also got a good few more hours sleep than previous nights.

The Team met this morning to make a plan for Gavin over the coming days.
Today they wanted to remove all the IV cables that were connected into his left hand and also remove one catheter.
The supra pubic catheter will stay in place (that's the one in his belly into his bladder) until tomorrow as the epidural is still connected so Gavin will not feel that he needs to pee.
Also to try Gavin sitting up. This would be hard as he has just been on his back for a week now.
Then extend the time and reduce the pain meds over the coming days and monitor his progress.

Anyway once some wires were disconnected we tried Gavin first sitting on Jayne's knee for about 20mins.
He was very sore and scared to move at the start as the tubes in his belly and also since he was only 24hrs post operation but he did it..

And then this afternoon we tried him again this time for 30mins and all good.

Wednesday, September 4, 2013

More information on todays Operation (The medical Bit)

Today’s operation on Gavin has me in a biological overload all day of how amazing the human body is and also the surgical team...

To give you the background this is what happened in today’s procedure.
1: Removal of the mould and wires need for the Brachytherapy

2: Fill the hole left from the removal of the tumour last week with good fatty tissue.

Now number 2 is what has fascinated me...and especially after how excited the surgeon was to educate me on this tissue they used.

The tissue they used is called Omentum. This is fatty tissue around the belly and can be good and bad. Thankfully in Gavin’s case it was good. They took some of the tissue and placed it next to the area that has been radiated and where tumour was...This will naturally help heal and repair..

“The advantages of the omentum flap are numerous and significant:
It is extremely malleable, adapts easily to irregular surfaces, and has a long and reliable vascular pedicle.
The omentum is composed of highly vascularized fatty connective tissue and is attached to the greater curvature of the stomach”.
The omentum also has collections of milky spots for immune system contribution. During infection or trauma in the abdomen, the omentum can also physically move to cover the wound and limit infection. Surgeons have reported omentum following their hands during an abdominal procedure...


Gavin has been doing great all day and is in very good form considering all that has happened. Long may this continue..


Day 10 2nd surgery and now in recovery all done

Gavin was amazing this morning in great form.
The play specialist Anna was with us the minute Gavin was up and we kept Gavin busy and mind occupied which was the best thing possible.
Down and into surgery for 9.15.
The procedure just took about 1 hr
Then the surgeon called to say everything  went very well and he was happy and Gavin would be taken to recovery now...

So relieved now.. Thank god everything has gone well and our baby is back with us now.


In theatre ready for the op

In recovery post Op

Tuesday, September 3, 2013

Day 9

Gavin didn't sleep very well last night. He just couldn't get comfortable with his leg again. We raised it up but the only thing that seemed to help was by rubbing it.
Jayne stayed in the Ronald Mc Donald room and I stayed with Gavin. 
After nearly 8 hours of rubbing I was mentally and physically shattered but Gavin then managed to go asleep about 8am This morning.
This afternoon he has been so much better and his leg is good too which is great to see.
He is booked in for the first slot for surgery tomorrow morning at 9.30am.
The doctors and surgeons spoke with us this afternoon. The plan apart from removing the plate and wires is to take some good fatty tissue that is around Gavin's bladder and use this to pack the hole where the tumour was removed. They explained that by putting good live tissue next to radiated tissue will increase the oxygen flow and hopefully aid recovery of the damaged tissue..amazing really.
Gavin has eaten a bit more today also which is great to see.
Please keep Gavin in your thought and prayers tomorrow morning that all will be good..

Painting in bed..

Masterpiece will be coming home with us
The happy Pirate 

Monday, September 2, 2013

Day 8 and no more brachytherapy for Gavin

Woohoo we finished 72 hours...32 session of brachytherapy done. No more closing doors and leaving Gavin for 14 minutes...
Main wires now disconnected and green ones cut down a bit.
Gavin helped the nurse disconnect the wires unbelievable..
So now we move to another ward for a few days...what a great day this is. And what a superhero Gavin had been 

Gavin got a superhero outfit from the play specialist for finished treatment 

Wires out and cut Down

Sunday, September 1, 2013

Day 7 - nearly finished Brachytherapy 12 hours left.

Getting closer now. All those seconds and minutes added up are bringing us closer to the end time for the Brachytherpy. 9.40am tomorrow morning 2nd September ..can't wait.
It was meant to be 7.40 but one of the wires wasn't working earlier so it had to be replaced. Then the computer hung that runs the radiotherapy program that controls the machine so what did they do....Shutdown and Restart the PC... 
 I laughed....the amount of time I've told people to do that...haahaaa

Gavin slept a bit more this morning and afternoon which was great. His left leg is causing discomfort but we got the pain specialist to check his med's again and the epidural so they gave him a little bit extra.
The nurse also changed all his dressings from the surgery this morning, she was really so gentle with Gavin it was and the wound is healed over already and the scaring is so clean...the surgeon and his team did an amazing job so far.

We still have his leg raised too which is also helping.
He ate some tomato soup and we have some peppa pig hoops from home with us so hopefully he will eat those later.
We will move tomorrow morning about 11.30 to the surgical ward where we will stay until Wednesday.
It's 9.30pm now so 12 hrs to go...

Below picture of Jayne waiting outside Gavin's room. Says it all really..

Day 6 - 16 sessions done half way..

At 10pm last night we reached half way thought the brachytherapy procedure.

It has got a bit easier now we know what to expect. Leaving Gavin still is very hard every 2 hours and closing the big metal doors but we know it has to be done.
14 minutes....that time will be stuck in my head for the rest of my life. 840 seconds. 
It does not seem long but when you are watching every second on a monitor screen and also watching your child every movement it is a very very long time... Gavin has got upset a few times and is very hard to watch but seems to settle after about 1 minute, it hard to watch knowing you can't just hold him tight ..but we don't want to stop the procedure once started.

Gavin still hasn't slept much so far just blocks of 1-2 hours and he isn't very comfortable. As for Jayne and I well 3-4 hours max so far but its ok, we have a job to do so sleep will have to wait. Our good mate Sargent Coventry (big gavin) told me before we came that 4 hours is enough and what the cadets in the army can live on..well it's working thanks mate:)
Gavin's Left leg has been giving him discomfort since the operation. We now know that the plate/mould used to hold the wires is close to his sciatic nerve so whatever way we can get him comfortable is a challenge.
Gavin has eaten small pieces of food, he can't decide on what he wants to eat so we are trying everything from pancakes to salami..
He is still in good form in between all the other stuff, watching movies and enjoying  opening the present we brought from family and friends. 
Please god the next 16 sessions go smoothly and Gavin can sleep more.
- Note to Gavin for when you read this in years to come "You are the bravest and strongest little man in the whole world, we all love you Gavin stay strong buddy. We will beat this together xxx"