Friday, August 30, 2013

Day 5 CT and start of Brachytherapy(radiation).

Gavin was in ICU all last night and Jayne stayed with him. I came back in at 6am.
Jayne said he was very restless all night and didn't know what was happening or why their was so many wires everywhere.. We explained that their was something in his tummy that the doctors seen when the took a photo and the wires will help medicine get in a fix it..

We then had to be moved down for a CT scan at 8.30am. Gavin had to be awake for this scan so myself and Jayne could both stay with him. It was a very tricky to move him from his bed into the scanning bed with all the wires but we all did it.
They needed to do the CT scan to check the area all the internal cables were located so they could program the radiation to that area.
We then moved up to the brachytherapy ward. 
Gavin has his own room as you can see from the pictures below. We can stay in a room close by with a pull out bed just to try get some sleep in between.
Once all the planning was done and computers programmed then it was time to load the external wires into the tubes coming out of Gavin's tummy. There is 8 all together. They then are connected to the machine.
He also has a catheter and another tube into his bladder.

So the first round was coming up and we had 5 mins to prepare...We both selected Gavin and turned on a DVD. Jayne left first and then I left just saying "ill be back in a minute I am going to get you something", he didn't budge or say anything...The big Metal doors then were automatically closed and the radiation could start.....

We watched from CCTV outside his room. He didn't move or call for me or Jayne... We watched every movement he made and every box that was ticked on the computer was only 10mins but it seemed so much longer..
Once the time was up the doors open and we went back in and acted as normal..then Jayne gave Gavin a present to open and we explained that every time he heard the machine he will get a present..
He really has been so amazing so far. He know that we cannot or he cannot touch the wires. He hasn't moved from the lying position since last night. He has eaten a few small bits which is fine.
Gavin told us after the last round that he could hear the medicine going down the tubes into his sounded like a digger he said. 

Before the external wires were inserted. You can see the 8 tubes.
Brachytherapy machine 

Now with wires connected. The machine sends the radiation down these wires.

This is what we can see from the CCTV

And the countdown screen.

Thursday, August 29, 2013

Day 4 The operation

We had alarms all set for 5 am and woke Gavin to give him his last bottle before fasting. He woke about 9 starving looking for some food, it's so hard after the last few days stuffing him to say no but once we moved into the hospital he was fine. 
We then had the wait until we were called for our slot for the operating theatre.
About 12.30 we got the call and tool Gavin down. He was so good and he knew what was happening as their was so many people around. At 12.45 the team were ready and we wheeled Gavin down to theatre. Jayne gave Gavin a big kiss and a hug and I brought him in. With the help of the play specialist we keep him occupied while the team got ready and then he was sedated. I gave him a big kiss and told him how much I loved him and all will be ok then left the team to start.
We then had the very long wait....
5.5hrs later we were told Gavin was in ICU and we could goto see him. We knew from before what to expect with all the wires and connections to monitors. 
Gavin also had 8 wires coming out from his tummy where the radiotherapy will be used.
He woke a few times and was looking for food and his bottle then dozed off again. He isn't happy with all the wires so the next few days will be a huge challenge for us all.
Jayne is staying in ICU with Gavin tonight and I will be back for 6am then a CT scan at 8am to align the wires for brachytherapy. Then straight into the radiation room and the brachytherapy begins until Monday...every 2 hours for 15mins.
We couldn't have asked for a better result today. The surgeon was amazing and told us he got out everything he could see without impacting any organs which is a huge relief.
So for now we are very happy and tired but know what lies ahead is still really huge task and long days and nights.

Playing in his room before operation

Gown on..

Ready to go..

And in ICU

Wednesday, August 28, 2013

Day 3

So we spent most of the day today in the hospital. We checked into the surgical day ward and met with some
Doctors and nurses and the play specialist Anna. Everything was fine so since we are just right next door in Ronald mc Donald house they said we could stay here again to tonight and just come back in for 10am which was super news. Another night together which is amazing.
Gavin has to fast from 5am so alarms have been set. Then clear fluids until 11am. His theatre time is 1pm so we still have no idea how long the operation will take yet so tomorrow will be a very long and scary day for us all (with a lot of prayers being said). Once the operation is finished Gavin will be taken to ICU where one of us can stay with him overnight. 
So tonight we played in the playroom, had dinner (which you can see we stuffed Gavin as much as possible) and watched some DVD's. 
Please god everything will go smoothly tomorrow and our little superman will be ok.

Gavin like me just had to mess around with the computer in his room:)

Eating Salami in bed.. Delighted 

Tuesday, August 27, 2013

Day 2

We had a free day today so we brought Gavin into Amsterdam City again to go on a Pirate Ship.
He loved it as the pictures below will show.
We got a call to say Gavin will be admitted into the Surgical Day Unit tomorrow at 11am so tonight will be our last night sleep together. Only one of us will be allowed to stay in the hospital room with him tomorrow night in prep for Thursday.

So this is what the plan is:
Wednesday 28-08-13: Admittance to Paediatric Surgical
Thursday 29-08-13: Surgery 1 (- Gavin will have an operation to remove the tumour located in his pelvis. This will be a very large and lengthy operation as it is in a very difficult place. Once the tumour is removed then the radio oncologist will place a plate around where the tumour was located which will hold all the wires need for the Brachytherapy
Friday 30-08-13: CT scan and start Brachytherapy (Every 2 hours Gavin will receive 15 mins blast of radiation. He will have to be in a special room for this 72 hour period. We can be with Gavin all the time apart from when he is getting the radiation which will be every 2 hours)
Saturday 31-08-13: Brachytherapy
Sunday 01-09-13: Brachytherapy
Monday 02-09-13: End brachytherapy
Tuesday 03-09-13 -
Wednesday 03-09-13: Surgery 2 (another operation to remove all the wires and plates needed for the Brachytherapy)

Below is a description of Brachytherapy:
"Brachytherapy is an advanced cancer treatment. Radioactive seeds or sources are placed in or near the tumour itself, giving a high radiation dose to the tumour while reducing the radiation exposure in the surrounding healthy tissues. The term "brachy" is Greek for short distance. Brachytherapy is radiation therapy given at a short distance: localized, precise, and high-tech"
How Does HDR Brachytherapy Work?
With High-Dose Rate (HDR) Brachytherapy, thin catheters are first placed in the tumour. The catheters are then connected to an HDR afterloader. This machine contains a single highly radioactive iridium pellet at the end of a wire. The pellet is pushed into each of the catheters one by one under computer control.
The computer controls how long the pellet stays in each catheter (dwell time), and where along the catheter it should pause to release its radiation (dwell positions). With a few well-placed catheters in the tumour, HDR brachytherapy can provide a very precise treatment that takes only a few minutes. After a series of treatments, the catheters are removed, and there are no radioactive seeds left in the body.

As you can see the next 8 days are going to be very hard on Gavin, but we know he is strong as he has showed us so many times before.

Monday, August 26, 2013

Day 1 AMC Amsterdam

Today we just had an appointment in the hospital with Gavin for MRSA swabs. They do this in every hospital if anyone has been in a different country hospital. As always the staff were so efficient.
We then had the morning and afternoon off so we went into Amsterdam City for a look around. We spotted a Pirate Ship so I think that's where we will be going tomorrow.
Gavin is in great form loves having his mum and dad to himself...little messer 

Model of AMC hospital as you can see it is massive..

Gavin telling Jayne where to go:)

And filling Gavin up with as much carbs as possible before Thursday 

Sunday, August 25, 2013

And away we go..

Just at the airport now. It's been a hard few days but we all set now.
Very sad to say goodbye to Conor and Lucy (even though they laughed at mummy crying) but we know it will not be Long until we are all united again.
We will update more this week of what is to come. Thanks everyone for all your prayers and well wishes for us all, we really appreciate it.

Wednesday, August 21, 2013

Great day with guys from GO GYM

We went down to GO GYM in Greystones today to get some photos taken with the guys. Lynda Pegman and Sandra Horan have arranged a spinathon for Team Gavin Glynn on 7th September. 

Click below for Facebook link

Home now

Gavin's so well used to isolation now like us so we know how to keep him entertained..colouring on the floor gives him a great laugh because your not meant to do it there:)

All ready for the scans

And then we wait for our little man of steel to wake from sedation 

Tuesday, August 20, 2013

MRI today

In crumlin now with Gavin for his last MRI and CT scan before we leave for Amsterdam
We now have full details of the plan for the treatment in Amsterdam so I will post them tonight.
Gavin is in good form apart from looking for food and his bottle...hate this fasting lark it's so hard on him.
But once this afternoon is over we will make whatever he wants to eat.
Last night I was cooking sausages at 10.30 pm😊

Chilling out in isolation room again.

Tuesday, August 13, 2013

Day 8 last day of chemo

Just in Crumlin now for Gavin's last day of chemotherapy. Today's one is called "Vencristine". Out of all the chemo drugs this is the one I hate most using on Gavin. It can cause tingly legs and feet, pins and needles and also drop foot(looks like flat foot)
But we know it works and is part of his program.
Gavin has no more chemo planned so now next is another MRI scan nxt Tuesday and then we will hopefully have dates for Amsterdam.

Lucy the super sister came in today too she is the best big sister in the world..

Monday, August 12, 2013

Lovely message for Gavin from Sargent Gerry Duff

Got a lovely message tonight on Facebook from Sargent Gerry Duff and he said I could share it. Thought is would be nice for Gavin to see this in a few years .

Gerry works with our good mate Big Gavin Coventry and Little Gavin sent him a message of support on Sunday while he was doing the Wicklow Way.

Gerry Duff (Irish Defence Forces) completed the Kildare Marathon on (May 12th), Waterford (June 29th) and the entire Wicklow Way (132km) (August 1st) in under 24 hours and now has Longford marathon (Aug 25th) wearing full army kit weighing 45 lbs to raise funds for Aoibheann's Pink Tie a charity that has helped us and many families like us with children with Cancer.

Hi John. Many thanks for sending me the picture of Gavin on Sunday. Much appreciated. Could you pass on this message to him please?
"Hi Gavin. I just want to say thanks very much for sending me your picture wishing me well on my run over the weekend. My wife Tracy showed it to me when I was struggling with tired muscles and sore feet. Your smiling face gave me the boost that I needed to go on. I hear that you are a very brave and determined young man which is great because the Army is always looking for tough guys like you. Thanks again, stay strong and I hope to meet you soon. All the best. Gerry Duff"
If you get a chance check out Ger's page on Facebook, he has 1 marathon to go so if you are around please show your support or send him a message.

Saturday, August 10, 2013

Day 5 chemo Saturday 10th August

No weekend rest for the weekend another trip to Crumlin. 
Day 5 all good well so far Gavin is starting to get a bit tired but as always in good form.
In crumlin now for about 2.5hrs. Lucy came in also to keep Gavin company and help deliver the Lolly pops to the Day ward.

What a poser Lucy is:) this batch should keep the kids happy for another month or so

Lucy and Gavin having some donuts before getting hooked up for his chemo.

Best big sister..

Tuesday, August 6, 2013

Back in Crumlin Day 1 of chemo

Started back this morning on another 8 days of chemotherapy.
It's been crazy in here this morning, but we have a room on our own because Gavin is now in isolation since we were in a A different country we will be in isolation for a while.

Gavin taking his own temperature this morning 

Happy putting stickers on his face:😜

Monday, August 5, 2013

All systems are a GO

Just got a call from our consultant in Crumlin to confirm he has spoken with the head consultant of the Team in AMC Amsterdam to agree that the procedure will go ahead.
They still have concerns about Gavin's pelvic bone but they agree they don't have the time to investigate now without delaying the procedure.
So we are back in Crumlin tomorrow to start another 8 days of chemotherapy and then another MRI/CT scan and we should have dates confined by the end of this week.

We have had a great weekend at home with the kids, there was a festival in Kilcoole so Conor and Lucy went to a disco on Saturday and then yesterday we entered polly into a dog show and she won:)

We brought Gavin into jungle mania which is a playzone. He has never been able to go into one before (fear about his Hickman line and risk of infection) but since we knew his bloods were ok and what was going to happen this week we decided to let him in and thanks to our friend Lynda who owns jungle mania they all had an amazing time..very hard to get them to leave too...

Gavin waiting to get his face painted and helped Rebecca hold back her hair..such a gent:)

His 2 minders..

And our good mate Big Gavin popped into see little Gavin

Saturday, August 3, 2013

Day 4 1st August

Big day today. Gavin was fasting from 8am for his Cystoscopy booked in for 3 pm.
We had a meeting with the 2 surgeons who would be present today for the Cystoscopy and they would also be the 2 main surgeons for the operation to remove Gavin's tumour.

They explained a bit more about the planned surgery but like before told us that no decisions could be made until after the Cystoscopy today. They all needed to be sure that the tumour had no infected the bladder..

They told us that everyone involved in the proposed protocol of treatment would be present today for the Cystoscopy and they will have a decision for us straight after.
We don't expect many people to understand but today was one of the biggest days in Gavin's life to date. Since we found out that Gavin's tumour had returned on the 28th of May the first conversation we had with our consultant in Dublin was that he didn't know whether Gavin could be treated at all and in his words “you may lose Gavin, I don't think there is much we can do...”
I hadn't written this before because it has taken a long time to sink in and believe it...Gavin looks so well and is very active it just couldn't be true..anyway it is and that is where our new mission and journey begun and has taken us to now.

Anyway back to today, so after that meeting we waited in our room with Gavin until they were ready. My cousin Damian happened to be in town on business and called out to us for a few hours which was great because it kept our minds occupied on difference conversations.
Meantime Gavin was also busy with the play specialist called Anna. She was amazing with Gavin and they did some painting and also started to make a new necklace for Gavin. We had seen these special beads before they are called “beads of courage". Each bead represents a different procedure while Gavin is in hospital like bloods or chemo or MRI/CT scans. So at the end of treatment he will have keep sake of his journey.

At 4pm we got the call that the theatre and everyone was waiting for Gavin.
He was wheedled down in his bed, he knew something was happening but he was still very calm and smiling and wanted to hold out hands. He seems to know at this stage what's happening which is terrible but great that he doesn't freak out.
Jayne and I take turns to bring Gavin in for a general anaesthetic so it was my turn this time.
I put on a brave face but inside I was very nervous as this was a very important examination..
Gavin was so good, I transferred him from his bed into the operating table and just held his hand while the anaesthetist administered the GA.
We always talk to Gavin while this is happening and just tell him to have a nice sleep and when he wakes up he can have a nice big drink...small I know but that's all he wants. Within seconds he was asleep; I gave him a big kiss and told him I loved him. I eyeballed the surgeon so he could see the look on my face; he just nodded at me which gave me some comfort as he knew also how important this was.

Jayne and I went back up to Gavin's room and within 20 mins we got a call to rush down to the operating theatre as they have some news. To say we felt sick is an understatement....
We were brought into a meeting room and then all the team start coming in...It seemed like nobody would look at us in the eye so I started to panic but they when all of the team were in the room and they closed the door and then they told us the test looked all clear😊😊😊
Unbelievable we could breathe again...I stood up and shook all the hands and thanked them...I was a bit  emotional and shaky but they all knew how much this means to us...they said they still have a question about a small crack in Gavin's pelvic bone but they're happy that it has not been infected with the tumour cells but they still need the head of the sarcoma department to check on Monday but they all agree it looks fine.
We then left the room and went into the recovery ward where Gavin was, and stayed with him until he woke up.

About 8pm Gavin woke and looked for his drink...what a little superhero he is...
He was very sore in his Willy and found it very hard to go to the toilet, we felt so bad we never like seeing Gavin in any pain but after some Codeine and more drinks showers, baths by 11pm he went to the toilet and everything started to some back to normal.
We returned to our room in Ronald McDonald House and sat up in the bed for a while and then crashed out...what a day...

Gavin all dressed ready for theatre

Even teddy had to wear a hat

Gavin in recovery

The start of Gavin's "beads of courage"