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.