Update so far

The test I mentioned previously for the ALK gene has come back negative so that means the new drug we had found out about cannot be used.

Another blow but it was back to work again and find something else.

We spoke with the consultant in Crumlin and he told us about a Protein blocker drug which we can try for 6-8 weeks which may hold the tumor and stop it from growing. It is called "Pazopanib".

Pazopanib is a type of treatment called a multi-kinase inhibitor. Kinases are important proteins in the body that regulate how the cells grow and divide.

Pazopanib works by blocking (inhibiting) signals within the cancer cells that make them grow and divide. Blocking the signals causes the cells to die. 

Pazopanib can also stop the cancer cells from developing new blood vessels. This reduces their supply of oxygen and nutrients, so that the tumour shrinks or stops growing. Drugs that interfere with blood vessel growth in this way are called angiogenesis inhibitors or anti-angiogenics.

Below we received a lovely gift from a friend in Rabodirect Sydney (signed Melbourne Rebels top)

At the weekend we were invited to Bergin Equine in Newcastle to there farm and for the kids to go horse riding. We all had such a great day and was brilliant to see Gavin, Conor and Lucy so happy and have loads of fun.

More bad news…One of these days we will post something good….

Well Gavin's MRI scan last Friday showed that the tumor has grown and now also a new lesion on his bladder. So 2 cycles of temozolomide and temsirolimus did nothing. 

After the scan last Friday I asked for a copy of the images on disk so I could send to the US Hospitals. When I got home I looked at the disk and report myself. To say we felt sick was an understatement. 

We didn't want to tell anyone what we had just read until we spoke with the consultant in Dublin. 

Our consultant rang on Tuesday morning and asked if we could come in and meet with him to discuss the results. I went in to meet with him on my own, as Jayne stayed at home with Gavin - it's too difficult to take stuff in when Gav is running around the room. We already knew…

He basically told me that he thinks there is nothing more they can do for Gavin. The tumor hasn't responded to the new chemo drugs and now had spread. I asked him what else we could try and he said, "I don't think there is anything left, you should enjoy your time together" to which I asked how long and he said "a few months".

Even still writing this it still doesn’t seem real the conversation I had. Anyone that has seen Gavin recently would know how well and strong he looks and is…He is very active and healthy but apart from that this bastards inside still grows.

So I asked the consultant about the possibility of surgery now the tumor had grown and he said, "nobody would be able to operate on Gavin". He told me to go home and relay this information to Jayne and then call him back during the week.

I sat in the car park in Crumlin for about 20mins before I could drive home. None of this seemed real…

I got home and was greeted by Gavin running down the hall to me with a big hug. I just switched off from what I just heard and tried to act as everything was normal. Conor and Lucy were home too so it was hard to try and speak with Jayne, but I did. I told her what he said and she cried, but we both agreed that’s just his opinion and not the final words..

Now our thoughts were we need to try something rather than doing nothing at all…so that afternoon we played with the kids as normal. As soon as they went to bed I started working on who and what I needed to do and contact ASAP.. 

We updated Sloane Kettering and Mount Senai in New York on the latest scans. They will be back to us next week.

Our consultant in Dublin said that since Gavin already had proton therapy and also brachytherapy that surgery without follow up radiotherapy to kill any microscopic cells would be of no benefit to Gavin. 

Well we don't think so….why would you leave something growing if it could be taken out...

We also have been in touch with Royal Marsden in London and some private clinic that have used a special radio surgery (Cyberknife) to treat other in operable tumors with success for their input.

I also spoke with another Rhabdo specialist in the US and showed him all Gavin’s history and he asked if the last tumor biopsy had been tested for ALK gene. I didn't even know what that was. After some more research and asking the lab in Dublin has this test been done and they said no...

"If ALK is positive, would be worth trying "crizotinib" since there is a trial by Novartis that allows treatment of patients of rhabdomyosarcoma who have ALK IHC positivity to be treated with the ALK inhibitor". (In English this means that there is a new drug available for children that have this gene mutation)

So that has given us some options, which we currently didn't have. We spoke with the research team in Dublin and they will test for this next week.

Then we asked about trial drugs so we are going to try Gavin on a course of "Pazopanib" to see if that will stop the tumor growth starting next Friday.

We are banging on doors now from all corners of the globe to get more people looking at Gavin's file to give us better options.

Sorry for the long post. Never Giving Up..

Gavin delighted with himself having some banana ice-cream in the car..

The 3 amigos playing in JungleMania this week.

MRI scans today

Back in Crumlin today for Gavin's MRI scan which will tell how the last 2 cycles of chemo have gone.

The usual fasting from 12pm last night was hard as Gavin woke at 5am looking for a bottle and wasn't happy and then we were all up at 6:15 am so we could drop Conor and Lucy to Jaynes a parents house for the school run.

Gavin was great all the way in, when we got here he was very thirsty (as anyone would be since it's so nice out today) so it was a hard few hours battle but he knew what the story was. Lots of silly games but anything to keep his mind occupied.

Showing the love below :)

Then off to MRI dept at 11:45. Gavin told the guys he loves the white medicine now which is the sleep drug..

Then he came back to is at 1:30pm. Hungry and very thirsty so loads of hospital toast with jam.

Gavin also got a lovely present which was sent to the hospital for him from a lady from Thurles who read Gavin's story in the daily mail. So very nice and a beautiful card and a big Easter egg which was a great surprise.

Thank you Mary Guinan.

And now we wait for results....hopefully sooner rather than later.7

Round 2 back in Crumlin today

We were back in today to start the 2nd cycle of Gavin's new treatment. This will be the last cycle before the MRI and CT reviews in May.

Gavin and Lucy in bed this Morning before we left. 

Gavin has put on a good bit of weight, he's actually the heaviest he has ever been which is great news. All the meatballs for breakfast and sausages (thanks Lynda) are really working and long may it last.

Gavin ran down the corridor today not a bother on him.

We received the new batch of chemotherapy on Saturday to bring with us.

So does this look toxic..

Gavin was great just watched some movie while getting his chemo. He wasn't sick thank god and we finished about 3pm which was great.

He is very tired this afternoon so he's just been sleeping on the couch since we got back. 

For the rest of this week we can give him his chemotherapy at home as they have made it up in a liquid format. We will just have to keep and eye on him and make sure he takes it all as none of it can be wasted and if spilt we will have to go back in to have it via IV.

Update so far this week

Well since last week Gavin has been getting on very well. His blood levels which usually drop from the chemotherapy have stayed up. He has been eating well also which is great. We know he needs to keep us his strength for the fight ahead..

The only side effect seems to be his sleeping or lack of. He becomes very restless at night-time. He is tired but keeps waking and a bit uncomfortable. He starts off in his own bed but at some stage will ends up with myself and Jayne which is fine. To be honest I can't sleep without him beside me now anyway (even if he kicks me all night long and wakes me for a drink or a bottle..)

So other news. Well we sent Gavin's sample last Friday to Foundation One in the US. I spoke with the team over there and the head researcher from Crumlin who has been a great help and fully supports what we are trying to do.

Unfortunately we received news last night that the sample was too small for them to conduct their testing...We knew that this might happen but hoped we had enough. On review of some articles about Genomic testing the below confirmed that using a sample from Gavin's first tumor wouldn't give us the desired results for what we are facing now.

(As more targeted agents become available, biopsy of the recurrent tumor may become an important intervention for selection of therapy since the mutations present at recurrence may differ from those present at initial diagnosis)

I had a conference call today with another oncologist in a hospital in NY. She was very helpful and gave me some good advise and also reviewed Gavin's file.

We are waiting for 2 other US hospitals to come back to us who we will have to paid to review Gavin's medical files and scans so we hope to have something next week.

We start back in Crumlin next Monday for the 2nd round of chemotherapy.

Other news we had a great surprise for Gavin on Tuesday. Jimmy Norman the founder of Aoibheann's Pink Tie who have always been a great support to us and all the families from St. Johns Ward asked if Gavin would like a mural on his bedroom wall. We didn't realise how amazing or what this was going to be like.
Well judge for yourselves but I think you can see from the smile on Gavin's face how much he and we all love it.
So big thanks to Jimmy and Conor and Cathal from Vinyl Murals (http://www.vinylmurals.ie/)

Update this week

All is good thank god so far this week. Gavin is in great form and has been very active which is brilliant. As below pictures show he also looks amazing.

 

We have been very busy this week contacting and collecting information form all different sources and compiling a list of specialists and hospitals to contact to get a 2nd opinion on Gavin's files.

 

We have had amazing support from people all over the world who have contacted us with names of people they know in different centres that may be able to help or know someone else who can so thank you everyone for your help and support.

 

I have also have been in contact with Focusoonrhabdoand another group called "Liddy Shriver Sarcoma Initiative" . Both groups have been amazing and have given me some direct contacts with Rhabdo oncologists. We also have had great contact from St. Baldricks in the US too which is amazing.

 

On Monday I met with the Consultant Paediatric Pathologist in Crumlin to discuss getting a sample of Gavin's tumor so I can get it tested.

One of the recommendations we have been given from another specialist is that we should get Gavin's biopsy sample tested for "Targeted Therapy". There is a company in the US who specialise in this testing procedure.

What they do is take a sample and test it in their labs and see what chemotherapy agents attack the cancer cells. This test is more specific for each different person and tailors treatment. We are unsure yet if we have enough sample from the last biopsy but we are going to send it to them anyway and hopefully they will be able to use it and give us a report of what agents work.

So tomorrow morning I have to go into Crumlin and send off the sample.

 

Link below is a video on what they do:

FoundationOne - Cancer Explained

 

So for now Gavin is well and in great form, we will monitor him now over the coming days and test his blood to see what his levels are like and continue to speak with as many oncologist's worldwide who specialise in Rhabdo to get their views.



 



 

Our Beautiful little Hero

 

 

 

SuperGavin - Man of Steel

 

 

Another day of chemo

Another day of chemo today. Gavin has put on some weight since last week which is great. In too form today even though we were in the hospital for about 6hours he was brilliant.

We got 2 pieces of good news today which is a great start to the week. 

1: we finally got Gavin's medical card renewed after a 6 mth battle with the HSE

2: Gavin's bone scan from 2 weeks ago is all clear thank god.

I have to admit I was getting worried today when our consultants nurse came to see us. She said he will call down later with the results. This is usually never a good sign. As the minutes and hours went on and Gavin still hadn't started his chemo I started to think they were delaying his treatment until we had seen the consultant but by 1:30 he stated chemo. Still no sign of the consultant by the time we left.

At 4:30 pm we got a call to say the scans were a clear...ahhh thank god 

Then tonight I recieved a message from another group in the US who 

have a website especially for information on soft tissue sarcomas. They gave me

Some great info and then invited me to a web video call. We chatted for a while and I got more info to look into.

Busy day tomorrow Dr. Glynn hat will be going on...

Below Gavin our little superman happy out today while getting his chemo. He really is amazing kid..

Day 5 week 1 over

Today went nice and smoothly thank god. Gavin had his usual anti sickness medicine and then 30 mins later has his chemo from the syringe. Like yesterday wanted to take it himself with no problems.

He was very active for the rest of the day and bit tired tonight so we will try rest him up over the weekend if possible 

Hopefully we will here more news back from some US hospitals next week about reviewing Gavin's file.

Cheeky but looking great doing some writing with his feather pen:)

Day 4

Gavin as always in top form today, he was chatting away to everyone and we had to show some of the nurses how amazing he is at taking his chemotherapy (Temozolomide) medicine.

We were told that some kids need to get a tube in as they cannot stomach the taste so we didn't know how Gavin would take it, but the below just shows how our little Superman handles it:)

Gavin getting "Freddie" (his hickman line) cleaned after he got some anti sickness medicine.

Day 3

Gavin had a bit of a restless night sleep and a dicky tummy but was ok by this morning.

He is still full of energy which is great and had no problem when I told him we had to go into hospital for his medicine.

Thumbs up from Gavin for today😊

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:)