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

Add caption

Gavin in recovery

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

Day 1 in MD Anderson

Hi All

Day 1 over. We were up about 7am this morning getting everything ready for our full day of appointments in MD Anderson.  Gavin had seen the hospital from our hotel room window and asked why we are going there and we told him “this is the place where they will get rid of the thing in your tummy (the black thing as he calls it..)

We went to the hospital and were met by a lady called Tiffany who we had been in contact with from home and who is a volunteer for Livestrong. We had to fill out lots of forms to register Gavin for the day ahead.

Everyone we met so far has been so nice and friendly even all the other people/patients in the hospital.

We met all the members of Dr Hayes Jordan's Team to discuss Gavin and what he has had to date and what their thoughts are.

At 4pm today then we met with Dr Hayes Jordan who is the surgeon that will preform the surgery and HIPEC treatment on Gavin. She was amazed by Gavin and they way he currently looks. Think all the nurses and doctors have took a shine to Gavin already. Dr Hayes Jordan was amazing and really explained everything in detail which was great. She really understands what and why we are here. Gavin told her about the “black thing in his tummy” and she said “well we are going to get rid of that Gavin”…and we are sure she will.

Tomorrow morning we have to be in the hospital for 7am as Gavin is booked in for his first MRI Scan, he will also have to fast from 12 tonight so no food or drinks past 12pm which is hard but we are used to it now. We have told him what’s going to happen and he is fine with it.

So far we are delighted and really impressed with the staff and hospital, they are all so professional but most of all make us feel very comfortable…

We received this card from the hotel staff after the met Gavin at dinner last night. They sent a present up to the room for him also. So nice..

Getting ready for the day ahead

Big high fives for a great 1st day

Houston TeamGavinGlynn have arrived

Well after a very long day we are here.

Just a quick update to say we arrived safe and sound. Minus 1 bag but it's coming in the morning.

Aer lingus made the long part of the journey so comfortable for us all they were amazing and so nice.

We were met at the airport from a friendly face who drove us to the hotel and had loads of goodies waiting which was amazing.

Gavin is wrecked god love him he only slept for 1 hr on the plane..

We have tomorrow to get our barings and then 1st appointment is 9am Wednesday morning.

Thanks everyone for your messages and support. Now for some sleep...

In the cockpit when we landed.

MYBOY

Please watch and share the below video with everyone you know and txt GAVIN to 50300 to donate €4

This number will just work within Ireland but if you would still like to donate please click on the donate button on the main page.

Also take a selfie of you and your favourite little people and use #myboy. 

http://youtu.be/1MS9F0rWGCQ

100% of text cost goes to Team Gavin Glynn across most network providers. Some providers apply VAT which means a minimum of €3.26 will go to Team Gavin Glynn. Service Provider LIKECHARITY 014433890

Some information on the treatment for Gavin in MD Anderson Houston Texas

We have more news back from MD Anderson. We have spoken at length with the team and they want to see us on the 25th June with Gavin, so we are flying out to Houston on the 23rd.

They have advised that we will need to be there for 6-8 weeks which is a scary thought but we have done this time away before so now we will just get on with it.

MD Anderson Cancer Center is the only hospital in the world that has the expertise and experience to preform this HIPEC treatment on children so we are going to the best place.

The treatment involves open surgery to remove all the tumors in Gavin and then insert heated chemotherapy (42 degrees) into his abdominal region. This will kill any microscopic cells that remain.
the surgery can take unto 12 hours to complete so this is very scary…

Below link explains and shows a animated video on the treatment:

http://www.hipectreatment.com/about-the-hipec-procedure/

As most people already know the cost of medical care in the US is massive. The HIPEC treatment alone will cost $400,000…We also will have to pay $25,000 on the 25th for some initial tests before the procedure.

When we seen these figures I thought they had put an extra 0 in my accident but this was not the case.

It is scary to think we need this amount and I know with all the support of everyone fundraising and donations that we will get it, but for now our main focus is Gavin and this treatment will work. If I have to sell my own organs to pay for it i will..

It is going to be very hard to leave Conor and Lucy again, we have told them we need to go away with Gavin for treatment, even though they are still very young they really understand what has to happen.

Hopefully we will be able to fly them out once Gavin is over the heavy treatment part so we can all be together.

This is our only hope of saving Gavin's life now so please god this works...

Updates so far

Gavin has been taking his tablets every morning without any problems. We have to check his bloods and kidney functions every week.

Below is some pictures of what we need to do every week. Gavin is so used to this routine now he just lies back and then gives me instructions on what to do…e.g.: "you need to use another wipe" or "time to clean this part" he is so funny but knows exactly what needs to be done.

Most people don't realise when they see him running around that this line has now been connected into his chest for nearly 3 years now..so it is a real part of him and he is very protective of it.

Our next steps this week is to speak with some more consultants overseas about what our next steps are.

We have had responses back from the 2 New York Hospitals to say that they cannot offer any treatment for Gavin which came at a big stock to us.. But we have had some information back from MD Anderson in Texas about a specific treatment protocol they have for cases like Gavin's so we have a lot of work to do with them on this first.

We will hopefully know more by the end of this week.

Cleaning Freddie (hickman line)

Great Weekend

We had a super weekend thank God after a very stressful time last week.  We had a lot of contact back and forward last week between hospitals in the US so we really needed some time to re group and clear our heads to make a plan.

On Friday night we were all VIP guest to the Circus Gerbola in Greystones. It was a brilliant show and they really pulled out all the stops for Gavin, Conor and Lucy which was amazing. Then on Saturday night Paul Byrne form Greystones arranged a few bands to play in the circus tent and all donations went to Gavin.

On Saturday morning we went to Galway.

Last year a man called John Killilea made Gavin's Superman bed and had been in touch with us lately about doing a fundraiser for Gavin.

He had planned a charity cycle with his club Tri Lakes Triathlon Club in Galway to do a 50klm and 100Klm cycle and raise money for Gavin.

We decided to go down and support John and all the other cyclist at the weekend.

John had arranged for the kids to go on a beach buggy in a field near their house, as you can see from the pictures below they loved it. John and his wife Edel and their kids and extended family and friends really pulled out all the stops for us while we were down and we are very grateful to them all and everyone who helped and participated in the cycle on Sunday.

SuperMan Gavin 

John & Edel Killilea 

Thanks to all the ladies doing MiniMarathon for Gavin

Big thanks to all the ladies who ran and raised money in the mini marathon on Minday for Gavin too we really appreciate your support .

Sean McShane Memorial Golf Classic

On Sunday we were invited up to the Sean McShane Memorial Golf Classic in Druids Glen Golf club to meet with John and Paul Mc Shane and some other footballers.
We had a great time with all the lads as we were presented with a very kind donation to Gavin's Fund from Paul which is really appreciated.

Amazing few day celebrating Gavin's 4th Birthday.

We have had the most amazing few days celebrating Gavin's 4th birthday.
He was made to feel like the most important person in the world today and he loved every minute of it. From the moment he got up, to the moment he flaked out in bed, he had the biggest smile on ...his face.
Sincere thanks to everyone who made this day so special for Gavin and all the Glynn family. 
Thanks to Rachel Flynn, Suzie Golby, Greystones Gardai, Denise Kane of Dundrum, to the guys in Hamleys and Jamie's restaurant and to Helena in Giddy Studios, and to Grainne (Cup Cakes by G) & Bake My Cake.
And big thanks to Graham and Ruth Spurling for the awesome cinema experience!! We will remember today for ever.

SuperGavin on the big Screen

Giddy Studios Dundrum

The Super Rachel Flynn

In Jamie Oliver with super cake


 

 

Then on Saturday we had a huge Superhero's Party planned in Jungle Mania Kilcoole. We asked everyone to dress up including all the adults and everyone made a huge effort for Gavin's Party. It really was a brilliant party.
Gavin arrived into the party in his new police car. He was beaming smiling to see all the superheros at his party.