Day 2

Thinks went a bit smoother today in Crumlin. The nurses knew what time we would be in so they were quick in getting everything ready.

Gavin found a perfect spot to watch a DVD..

And a quick cheeky selfie with me

He was amazing taking his medicine today. They mixed the solution in with apple juice so he just needed to take about 20ml. I gave it to him and he was fine. We had to wait another 30 mins afterwards to make sure he didn't get sick but all was ok to leave.

We stopped on the way home to meet Jayne, Conor and his friend and as u can see Gavin was in great form.

Looking good not long after his chemo.

Not happy getting kisses from Conor either 

Day 1: Back in crumlin to start the 2 new drugs (Temsirolimus & Temozolomide)

Temsirolimus & Temozolomide. The new buzz words we will be using for the next few months.

What are they…

Temsirolimus -  is a type of biological therapy drug treatment called an mTOR inhibitor. 

Temsirolimus also stops the cancer from making blood vessels, which the cells need to be able to grow. It is called an anti angiogenesis treatment. So temsirolimus helps to stop the cancer growing or may slow the growth.

Temozolomide -  is a chemotherapy drug used to treat brain tumours. It is a type of drug known as an alkylating agent and works by stopping cancer cells from making new DNA. DNA stands for DeoxyriboNucleic Acid. It is the genetic material of a cell. If cancer cells can't make DNA, they can’t split into 2 new cells, so the cancer can't grow.

The above is the easiest explanation of what these drugs do. Over the past 2.5 years we have become very familiar with medical terminology so much that I am questioned sometimes on my background, but I feel this is the only way to know and understand what is going on and what the doctors and consultants are talking about. 

Gavin was in great form going in this morning which was great. Most of the nurses that we have become good friends with had all been told about Gavin and were gutted for us, they knew we were in today to start the fight again. 

We arrived in Crumlin at 9:30am and had a beautiful isolation room waiting for us. No TV or toilet so lucky we came prepared with the laptop and iPad. 

(Gavin wanted to see how big he is getting)

They had to test Gavin's blood levels first and then get the new chemo drugs made up. At 2:30 everything was ready. It was a very long day waiting around…watching the clock and thinking about what is going on. The nurse had to give Gavin some antihistamine first and wait 30 minutes as one of the drugs side effects is a rash.. 
One drug was able to be given orally in some apple juice and then the next was given over IV.
We watched Gavin carefully as the nurse told us if he has a reaction it will happen within first 20mins….
Gavin face went very red and he felt sick about 15mins into it but it soon calmed down so the rest of the time was ok thank God.

Gavin getting his chemo below. The purple bag contains the chemo. 

We left Crumlin at 5pm and then collected Conor and Lucy from Jaynes parent's house and back home together. They knew Gavin was back in today and were very good asking was everything ok.

So we are back in every day this week and hopefully it will not take as long.

Tonight I have a few hours to research and compile more information on Gavin's case to see can we get anymore information to help us going forward.

Full Body Bone Scan and meeting with Gavin consultant

On Thursday we were back in Crumlin with Gavin for a bone scan.

This involves injecting a radioactive dye into Gavin's blood and then waiting for a few hours until it goes all around his body and then a scan. Our consultant wanted to do this to make sure there was nothing in Gavin's bones before proceeding any further with treatment.

Gavin had to have a general anastethic for the scan so fasting again..

We arrived at the hospital at 9:30 and then Gavin had to have a cannula inserted in his arm. He was amazing the guy putting it in asked Gavin to look at us while he was putting the needle in his arm but he told him he wanted to watch..and didn't even flinch. The guy was amazed how brave he was.

Then we went back to the ward for a few hours and waited for the scans.

Our consultant then came up to meet with us to go through what was going to happen next. He had checked with 2 other consultants in the US and they both recommended 2 drugs which Gavin's body had not seen before. 1 is a chemotherapy drug and the other is a blocker.

Plan is to do 2 x 21 day cycle of these 2 drugs and do another MRI and CT scan and see what impact it has made on the new tumor.

Amsterdam have come back to say that surgery or more radiotherapy is not an option as they said Gavin has reached the maximum dosage in that area. Anymore could cause organ damage or bone damage...

So for now we have to see what these 2 new drugs will do. In the meantime we will still investigate and speak to other hospitals worldwide for input and advise on our options and then discuss more with our consultant in Crumlin.

(Gavin below being very careful with his arm.)

1 pm then we got the call everything was ready.

Below waiting outside the scanning room.

In we went and Gavin had the general anastethic. He had told us a few days before that the "white medicine" makes him feel all fuzzy..seconds later he was asleep. 

We both gave him a big kiss while he was on the scanning table then left the room. The nurse told us it will take 2 hrs so we went and grabbed a coffee or 10.

Waiting around for the call to say he is in recovery can go very very slow..it is really click watching all the way.

About 3:30 then we got a call to say he will be coming back to the ward. It took Gavin another 30 mins or so to wake up and look for a nice cold bottle:) after a while

Then he wanted some Toast and within another hr he was ready and ok to leave.

As soon as we got home

He was delighted and still hungry which was great so now he wanted sausages...anything to keep his weight up.

Not good news yet again. New tumor growing..

Today I got the call while at work we have been dreading to hear...Their is a new tumor growing in Gavin's Pevlis.. 

I had to leave work and drive home to tell Jayne. It was a very long drive home..

2 weeks ago we had a scheduled MRI scan to see how the last few months of chemo had gone. To be honest I was very confident that after all that had been done in Amsterdam we would finally get good clear scans. 

Before Gavin's MRI waiting to go in.

While Gavin was in being treated for his infection our consultant came down and told us they spotted something in the scans and was unsure what it was...but had an idea it was a tumor. I didn't and couldn't believe it so we asked to do another scan and see if a biopsy was possible.

This took about a week to arrange so we were sent home that day with this thought in our heads. What was happening....how after everything that has happened can something else grow..to say our heads were sent into meltdown was an understatement but like all of the previous times we just needed so time to soak this news in and make a plan. 

We got word that they wanted to do another scan and see if the biopsy was possible so last Tuesday we had a CT scan. The picture below is Gavin in the CT lying perfectly still..

The radiographer showed us the area after the scan. We could see the part which showed grey on the scan. It is about 2 inches away from the area that was treated in Amsterdam. He then told us he could do a micro needle biopsy on the area and hopefully get a good sample. The area in question is only 9mm..

Back into Crumlin last Thursday for the biopsy. 

Below picture just before biopsy.

And after biopsy wakes up and bright eyed looking for a drink. 

Then back to the ward for some toast and watch a movie.

So we got home Thursday afternoon and then more waiting for news. Would the biopsy show tumour cells or benign cells..??? 

To say that the last few week have been hard on Jayne and I..well I can't even put into words. Every day, every minute all I kept thinking that this time everything would be ok. We still had to try and put on a brave face for Conor and Lucy they don't need to know about this yet..

So now we know.

What happens next...well our consultant is waiting for the team in Amsterdam to see what the can suggest. Because Gavin has already had a lot of the drugs recommended for his type of tumor their is not many left. 

While he does that we will be doing our own research and contacting different people and hospitals worldwide to see what their input can be. We will go to the worlds end to get rid of this bastard once and for all..

Tonight while our baby sleeps one thing is for sure. Cancer will not take our baby away from us..ever. We will win this battle.

TeamGavinGlynn.

Day 2 in isolation

Can't say it was the most comfortable sleep last night but we got through the night ok.

I was in a pull down camp bed beside Gavin. He finally got asleep after 10 pm

Last night. It was very bright outside the room so he kept telling me it wasn't night time..

I woke about 2am as one of the nurses was in the room and we checked Gavin and his temp was up again..so I woke him and gave him some calpol.

I think I ended up in Gavin's bed more than my own as he wanted me to be beside him.

Jayne came in this morning after dropping Conor and Lucy to school.

Gavin didn't have any temps since last night so hopefully it stays that way.

The blood cultures still haven't come back yet so hopefully by lunchtime tomorrow we will know more.

He's been so good like always.. Happy out playing his IPad and watching Ben 10. We are in a isolation room so we can't even use the playroom.

Jayne is staying tonight so please god they get a bit more sleep..I'll be back on te morning.

Sleeping last night. 

Happy out painting some Ben 10 pictures 

Just been admitted..

Gavin has had high temps since we were in on Friday.

They took blood cultures on Friday from Gavin's Hickman line and from his hand. It takes normally 24 Hours to grow in the lab if any infection was present.

We got home Friday night and Gavin temp was upto 39..then again Saturday morning at 4am. We got a a call then last night at 10 pm to say something started to grow from thes test on Friday...and to call this morning at 9am

But Gavin had another temp at 5 this morning so we knew something wasn't right.

Into Crumlin we went for 10am and now they want us to stay in.

So for the first time in over a year we have been admitted. Good thinking by Jayne to pack an overnight bag for us...

So they are going to take more bloods and start Gavin on IV antibiotics. 

Lovely day yesterday

Yesterday we went to met with Father Mark and the other Benedictine monks from the Silverstream Priory.

It was great to finally meet as they have been praying for Gavin since I got in touch with Father Mark.

Below is a very special prayer for Gavin.

http://vultus.stblogs.org/index.php/2014/02/ask-her-intercession-now/

Back home and full of beans:)

Gavin and Jayne got home just before 8. He looks better already more colour in his face. He was full of energy too and hungry.

Jayne called me earlier and I asked what he wanted for dinner and he said "muscles for my muscles" so of course I went and got some for him..

They told Jayne we don't need to test his bloods again now until next week which is great. After getting a transfusion the new blood lasts for 3 days in your system then your own body takes over to naturally build the levels back up.

Polly happy that Gavin is home

Muscles for superman :)

Bloods lower again today..

Well hospital just called Gavin's bloods have dropped again so it's time for a blood transfusion...

They wil order the bloods now and they should be in by 2pm today.

Hopefully this will give Gavin a boost.

Bloods very low

I took Gavin's bloods into Crumlin today thinking they would be back up since last Wednesday but he has taken a dip even lower now...

I have to take them again tomorrow morning first thing as he may need a blood transfusion tomorrow or Wednesday if they don't crawl back up.

He is in great form a little pale but apart from that no major signs but with Gavin you can never tell until the bloods are tested.

All weekend he was very active. His hair went very bald in patches again so on Saturday we decided to shave it again.

He was great, first he shaved my head and then I did his. He laughed and said that the 2 of us are "baldies now"..

Video message from Conor McGregor to Gavin

Wow received this video this morning for Gavin from Conor. Just amazing... and shows how nice Conor is.

Can't wait to bring our superhero fighter to see Conor.

Bloods are low

Well that time of the week again and day 10 post chemo and bloods are low.

It's a lockdown house again for the next week..

I will do the bloods again on Friday to see what they are like before the weekend hopefully a few days watching more Ben10 (if their is any left to watch) and resting may bring them up a bit..

Great day meeting Conor McGregor.

I had the privilege of meeting the amazing MMA Irish fighter today Conor McGregor. 

He was such a nice guy and wanted to meet Gavin so hopefully this weekend we will be able to bring Gavin, Conor and Lucy to meet him. 

I gave him a SuperTeam Gavin Glynn top too..

Amazing fighter and positive person but most of all an absolute Gent.

We did a video with Gavin when I got home too and sent it to him,  as I brought a pair of gloves and Conor signed them to Gavin.

Day 4 daddy on duty..

Conor had to have a small procedure yesterday so I took him in. He is a bit site so needs to stay off school for a few days so I took some annual leave from my work.

Jayne stayed home with Conor and I'm now in with Gavin.

Haven't been in with him for his weekly chemo for a while so Gavin told me this morning that he would show me where to go:)

The traffic was crap this morning and then Gavin started to get sick in the car. Jayne had told me this happens nearly every morning on the way to the hospital. It happens from the chemo from the day before but super Gavin being so used to it asked for his sick bag and then threw up. 

It made me so angry to see him getting sick and being so able to handle it himself....but he was back to himself soon afterwards which made me calm

Down.

Anyway we got to the hospital and then Gavin wanted to use his scooter all the way in...amazing turnaround that just shows how brilliant he is.

So we all hooked up now in for the duration. Loads of movies of ben10 and playing sky landers on his iPad for the day.

Scooting down to the ward 

Hard level in sky landers:)

Day 2

More prepared today last nigh I loaded up my laptop with movies and Gavin's new favourite Ben 10 so he has a good few hours of videos to watch.

They didn't start till 10:40Am which means that they will not be back home until nearly 7pm tonight...

Long day for our little superman and Jayne..please god their will not be much more of this...

Happy out with his bottle and videos ☺️

Another round of chemo Monday 27th January

Well bloods back up again so still on schedule so Gavin started back in Crumlin today.

The normal isolation room that Gavin is in was already taken which meant that the only other place he could go for the day was a spare treatment room (no tv or toilet)....

Lucky Jayne had the IPad with her and then we got a lend of a DVD player for the day.

Bloods still very low

Gavin's bloods are still very low. He is due back in again on Monday for another week of chemo but they are atill low so we will have to test them again on Friday and then maybe Sunday to see how he is.

He is looking very pale too which is a combination of low bloods and platelets.

We have been resting him as much as you can for a 3 year old but Conor now also has tonsilits again so we've been trying to keep them apart so Gavin dosen't catch anything.

Good weekend for our little superman

Well after a long week on chemo in Crumlin Gavin was in great form all weekend. He has slept well and ate and kept his energy levels up. 

As pictures below himself and Lucy first thing Saturday morning playing and dressing up and of course first and only dress up for Gavin is his superman outfit and by god he really is super human:) 

Tough day for our little superman

The days in getting chemo are taking toll early this week poor ole Gavin is very tired..

Back in for another round of chemo

No sooner has the Christmas period finished and kids back in school Gavin started back in Crumlin yesterday for another 5 days of chemotherapy. 

We all had a nice Christmas and Gavin Conor and Lucy all enjoyed it which was brilliant. 

Can't say that Jayne and I were not sad to see the end of 2013 as that was a shit year for us all but I fell please god 2014 will be a great year :)

Picture below Gavin at the weekend and doing some artwork with Jayne in Crumlin this morning 

Christmas trip to Crumlin

Well I kind of guessed we wouldn't make it through Christmas without a trip to the hospital..

Gavin's cough was getting worse and he also start complaining of an ear ache so we headed into Crumlin yesterday to get checked out.

Lucy came too to keep Gavin company which was great. 

The doctor said Gavin sounded bunged up and noises around his lungs so she wanted to do an X-ray to make sure.

That came back ok so she said it was a chest/ lung/ ear viral infection so antibiotic for 7 days.

Conor also has a tonsillitis again...it's the time of year I think so a quiet few days ahead for the Glynn Family..

Bloods up Chemo week again

We did Gavin's bloods again yesterday and they were all up, actually a lot higher than expected so Jayne took him in this morning to see if everything was still ok to start chemo again. He is still coughing a lot and has a cold but they said he was good to go.

So day 1 done he was so tired Jayne said this afternoon and by 4pm he was asleep. He slept for another hour in the room and all the way home.

He woke and was in great form. I had to cook him a burger and also make chocolate rice crispy buns at 9pm...it's now 9:30pm and he wants creamy pasta ...it's gonna be a long night but delighted he is still hungry and eating.

3.30 pm all good and awake...

By 4 he crashed out..

And now :)

Crispy buns....

Time for a top up..

Got home about 6:30 after a long day waiting around but great news the X-ray showed lungs are clear so just bad chest infection. So on antibiotics for 7 days.

Jayne is now sick too and Conor sounds like he also has a chest infection ahhhhh..

Back in now this morning for a blood transfusion. Hopefully between the antibiotics and bloods it will help Gavin to build back up as he is due to start another round of chemotherapy next Monday. Feel so bad for him we will be in again before the end of the week for another checkup and then he will be here all nxt week too...

Having some choc dips while getting some blood he is just amazing..

Back in Crumlin

Had to bring Gavin into Crumlin this morning and still here. He was coughing and making him sick but no temps so wasn't taking any chances.

They keeping us in now to do a chest Xray as his cough seems very deep. Try took bloods too as he is very pale. Going to be a long day I think.....

Round 3 of chemo done

Since Gavin's blood levels were back up he has been back in Crumlin all this week.

It's a very tough week for Jayne too as after dropping Conor and Lucy to school it's straight into Crumlin and long days.

(6 hours approx once everything starts). Most nights they didn't get home till 6:30..

I've tried to be a good house husband and cleaned the house out washes on and made dinners homework all the normal mummy tasks but i don't think I'll ever do it as good as Jayne hahaaa.

Gavin is so used to it now which makes it a bit easier. He never complains but the job for Jayne is to keep Gavin entertained  while in the room. The bag of tricks and food gets bigger every time as Gavin's food taste changes but Jayne is amazing at organising all this. 

Gavin has been in great form all week but it looks like the small but of hair he had grown back is falling out so it's shave time again..

So his bloods so far are good so next bloods is Wednesday. 

Below Gavin on a chill out watching TV.

Happy out snack time with his fruit corner.

Swingathon for Team Gavin Glynn in Barefoot Fitness Kilcoole

 

Well what a day we had on Saturday with the 50,000 Kettle Bell swings in 2 hours for Team Gavin Glynn in Barefoot Fitness Kilcoole.

we had 30 people turn up to take part.

 Thanks so much to everyone especially Val Lawrence ; Andrew and Sharon Maher and all the guys from Anna Bootski Camp Bray.

 

Gavin got in for a few swings at the end to show us all how it was done. Sigita Playdon took all the amazing photos on the day. It really was amazing and so glad myself and Jayne took part too. Still recovering....

 

 

Presentation from Eileen Jackson for Going Gold for Gavin Day.

We would like to thank everyone who donated and raised money on Going Gold for Gavin Day in St Patricks National School. You all raised and amazing €8,150 for Gavin's Fund. Thank you all so much.

 

 

Also big thanks to all the people below for you contribution's also.

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