Day 3 getting closer...

Today we met with the head of the radiation team who specialises in Brachytherapy. He gave us a very detailed overview of the procedure and possible side effects. Not much we didn't already know from our research but it was still very good to hear it all from the expert. He advised again that after tomorrow review they will meet and decide what will happen.

We then checked Gavin into the ward for tomorrow's procedure. The ward is very nice and all the staff were very friendly. They said since we are staying so close he didn't have to stay in the hospital tonight which is great so we can all be together tonight.

Gavin will have to be fasting from 9am in the morning "last bottle of formula" then 12 am last drink of water and then the Procedure will be at 3pm. Please god all will be good and they will give us a decision tomorrow..or before we leave on Friday.

We also meet with Anna the play specialist who have us some useful information about how to keep Gavin entertained during the radiotherapy sessions. We will meet her again tomorrow to see the rooms where this treatment happens.

Waiting room for radiotherapy 

Gavin's hospital room (with his own name)

Gavin taking it easy tonight 

Day 2 all good so far

Today we had more meetings with some doctors from the muti - team.

Gavin was in great form and was chatting away to them. He was so good as we had to give the different doctors an overview from our perspective on what has happened to date.

Tomorrow will be a very busy day as we are meeting with the surgeon to discuss the overall surgery and his plans and also to discuss Thursdays procedure which is a "Cystoscopy", ( A cystoscopy is a medical procedure used to examine the inside of the bladder.

It's carried out using a cystoscope, a thin, fibreoptic tube that has a light and a camera at one end.)

This will be to check the tumour has not affected Gavin's bladder or urethra.

Gavin will need to stay in the hospital overnight to prepare for the cystoscopy.

Below Gavin enjoying playing in Ronald mc playroom 

 

And for the boy that loves pirates the below pirate ship was part of the children's oncology waiting room...amazing 

Day 1 AMC Amsterdam

We arrived safe and sound yesterday afternoon. We got a taxi from the airport to AMC which is just about 20mins drive from the airport and then checked into Ronald McDonald House which is located on the same grounds as the hospital 

We had out first meeting this morning with Dr.Reineke at 8.30am. She was so nice and friendly and showed us all around the hospital.

She took bloods and swabs from Gavin's skin as they need to test for MRSA from all international patients first before we are allowed to any of the oncology wards.

Dr. Reineke explained a small bit about the operation and treatment and what lies ahead but advised we will not know if everything is a go until Friday. 

They will use this whole week to build a picture of the treatment for Gavin and then all meet together first.

We had the afternoon of today so we took the train into Amsterdam city and went on a canal ride. 

Tomorrow we meet with the anaesthesiologist to discuss procedures.

Amsterdam here we come

Well off today to Amsterdam. 

We have appointments starting from 8am tomorrow morning till Friday with the Multidisciplinary teams from AMC (Emma children's  Hospital Amsterdam).

Very sad leaving Conor and Lucy but they're happy with their granny and grandad for a few days. 

We will update with some news and pictures from Amsterdam.

Great day today..

Well we had a great day today before we head off for Amsterdam hospital tomorrow. Gavin Conor and I went on a helicopter from Newcastle Air field which was all planned by one of our neighbours. It was amazing trip and Conor and gavin were so excited.

Jayne took Lucy to get their hairs done so nice girlie day for them too.

Me and the boys..

Great view of Wicklow coastline 

Our chopper:)

More MRI scans today

In crumlin at the moment waiting for Gavin's MRI scan. Today has been hard to keep Gavin's mind off food and drinks. Since he has been back on food he is loving Gavin pasta carbonara at about 10am and it killed us this morning to say sorry we have to goto hospital and you can't have pasta or drinks...I hate the fasting part. No food 8 hours and not drinks 6 hours before scans

Anyway below is Gavin doing some amazing painting of his favourite superhero. Hope you see this Henry.

Showing the Love :)

Love this Photo..it says it all really..

Update Tuesday 23rd July

Gavin is doing well now this week. He has picked up quicker this time round after his last round of chemo, last week he wasn't feeling too good very tired and off all his food so it’s great to see him bounce back quicker.

PET Scan we had 2 weeks ago showed the tumour in Gavin's Pelvic area. Their was some questions about something that showed on Gavin's lungs also but thank God that turned out to be nothing of concern.

We have another MRI scan this Friday which will see how the tumour looks now after 2 cycle's of the new chemo drugs.

We got the go ahead now to meet the team in AMC Amsterdam. We are flying out on Sunday for 5 days and will meet all the Oncology Team to discuss and investigate the treatment options for Gavin.

Gavin chilling out with Polly

Pictures of the last 2 weeks

Gavin having his chemo in John Ward playroom

Lucy and Gavin having fun on Gavin's chemo IV Drip

Lucy made a new friend in St. Johns Ward, 3yr old Roisin was recently diagnosed with leukemia.

Some Pictures below of a amazing family day in the Irish Army Camp which was arranged by our best mate Big Gavin (Sargent Gavin Coventry)

The 2 Gavin's

Starting another round of 8 days of chemotherapy

After PET scan yesterday  the plan was to give Gavin another 8 days of chemo. 

The results from the last MRI showed no change in the tumour size so see what another round does. 

Playing on IPad while getting his chemo

PET scan 10th July

Gavin had his PET scan today in Blackrock Clinic. This was to scan all his body for cancer cells. The team in Amsterdam wanted this done to make sure no other cells show up apart from the main tumour in his pelvis. Usual few days waiting for results now.

Pictures below Gavin getting ready and wasn't phased by anything that was going on, and next picture was just waiting for our little hero to wake from the sedation 

Waiting to wake up

MRI Scans today

Picture below Gavin and me waiting to go in for his MRI scans. He's in great form. Usual have to wait for a few days for the results and all the other hospitals now to see what they think. 

Time to shave Gavin's head.again...

Well Gavin's hair was coming out in big clumps yesterday and today..He actually said tonight "daddy you cut my hair"..so that was it time to go. And to make sure that Gavin didn't feel different Conor asked could we shave his too so he could look like Gavin. I was so proud of Conor he dosen't realise how much of an amazing brother he has been for gavin

Anyway meet the 3 baldies

:)

A day of SuperHereos

 

Well what a day we had yesterday. All up early as usual for a Saturday morning and Conor, Lucy and Gavin dressed up in their superhero's outfits my cousin Sinead had sent us from the US.

 

 Later on then we had a big surprise when our very good friend Rob Moran called me to say he had a special surprise for Gavin.

 

Rob called out in full Superman gear with a very special present for Gavin.

As below Rob arranged to get a signed poster from all the cast of the new Superman Movie and then also got it framed and attached his own 2 medals from Ironman Switzerland and Lanzarote too. 

 

We want to thank Rob , Ivan, and Henry for what you all have done. It so amazing thank you so much from Team Gavin Glynn xxx

 

 

 

Our super kids

Fuck you cancer..

Well looks like chemo has kicked in Gavin's hair started to fall out last night. We didn't want to shave it all off yet so Jayne took Gavin upto out friend Sarah and she did a great job. Sorry but very pissed off today we knew this would happen but still makes me feel so angry today.

Anyway here is our new big boy Gavin 

A week in pictures sums it all up...

Update today Thursday 13th

Update from this week so far.

Bone marrow biopsy from Monday all clear

CT scan of Gavin's chest all clear

Bone scan from today just heard all clear. Just in recovery now waiting for Gavin to wake up.

So more chemo tomorrow and Monday weekend off which will be great. Gavin a bit tired now so we will batten down the house for the weekend...

Picture below gavin wouldn't stay in his bed for his chemo so Jayne and I took turns pushing Gavin with the IV chemo stand. 

All dressed for theatre

Bone marrow biospy today

In the day ward in Crumlin now trying to keep Gavin entertained and his mind off food and drink. He has been fasting since 12 last night and hasn't had any drinks either. He's been great so far just hope they will bring him down soon.

Plan for today bone marrow biopsy then start on 2 types of chemo  irinotecan with vincristine.

Not good news

As you may have gathered by now since we didn't post about Gavin's scan results that we didn't get the good news we had hoped for.

Well the exact opposite.

We met with Michael our consultant on Tuesday 28th at 10.30am. He told us news wasn't good the scan showed the tumour is back...it is 2cm currently and in the original location. This is not good...not good at all.... So all the treatment for the last 1mths kept it away but didn't kill all the cells from re generating.

To hear the word "I'm sorry but you may loose Gavin" is something I will never ever forget....we know this is the worst outcome possible. 

Our consultant is checking with other groups to see what the recommend. This will take a week so until then we need to try and enjoy our time with gavin and Conor and Lucy and wait to see what the plan is please god....

Today is the big day on the way for CT and MRI

IV ALL DONE...WOOOOHOO

Well I have to admit that was a bit emotional.
Gavin as always just took it all in his stride. He was running around the ward for a while and in the playroom and then the shout came, Chemo was ready.
He just hopped up on his bed and wipped his Freddie (Hickman Line) out and off we go.

All the nurses in the day unit came over to see Gavin and take a picture. They are the most amazing people in the world for the job's that they do and we will always be indebted to them for everything they have done for Gavin and all the other kids. Thank you thank you thank you...You know who you are:)

anyway some picture of our Hero from this Morning.

Oh yes 1 other think I hope we will never ever hear the sounds of the IV Pump beeping again....:)

Pictures Below:

Yeh Yeh just put it in...

Gavin making sure everything is connected correctly..

me and my hero

Last time we will see that IV drip and Chemo Purple Bag

Last IV Chemotherpy today

Well I don't think nearly 18mths ago we would have thought we would seen this day, but today Gavin has his last session of IV Chemo.

His bloods have stayed up over the last few weeks so he has been able to keep up with his treatment sheudule.

He has been in such good form since my last update and has even started Montessori education 2 mornings a week.

This month we have a lot happening...Gavins scans are booked in for the 24th of May, then we have a meeting with his consultant on the 28th so hopefully he will have the scan results ready then the next day Gavin will be 3 years old. What a life he has had so far but I know everything will be good from here on in.

I have decided to take a small break from all my other childrens cancer work & campains for a few months so I can focus on Gavin, Conor and Lucy.
It will be very hard to step out of this since it has been our lives for the last 18months..what is normal life outside of this Cancer bubble..well I will have to wait and see.

Anyway please all keep Gavin in your thoughts and prayers especially over the coming weeks. Once we get over this month we can relax for a while until the next scans in 6months.

Gavin and Conor below helping Greystones Fire Service charity carwash

Now he wants a real motorbike:)

Just got the results...

I just got confirmation that Gavin's ultra sound and x ray are normal!...wooohooo thats my boy.

I knew it wouldnt be any other way but still when you get the all clear news it really makes you feel so much better...thank u god...

roll on MRI and CT now. The dates have changed to the 24th of May so that means 4 days for results which of course it great timing.. GAVIN'S 3rd BIRTHDAY....

Update 8th Feburary 2013

We were back in Crumlin Hospital yesterday with Gavin for a chest X-Ray and Ultrasound of his Pelvic area. Gavin's consultant is happy that these scans are OK while he is still on maintenance.

Gavin has been in great form and has been putting on loads of weight. He is now 15.6Klgs which is amazing.

He started in Montessori last week and is going 2 days a week for about 3 hours.

He also gave us dates for end of treatment.....

20th May will be Gavin's last chemotherapy (please god) and he has booked post chemo scans for 20th May (this will be a MRI and CT)..

Gavin 3rd birthday is 29th May....What a birthday present this will be....CLEAR SCANS AND CANCER FREE BECAUSE I'M 3...:)

Picture below is from Monday. Lucy Conor and Gavin.
Thanks to the guys from Matt Britton Flooring for donating this wonderful personalized carpet in Gavin's Room.