We are now outpatients wooohoo

Just to let you all know we got discharged from the hospital yesterday wooohoooo. They are happy to let us leave and for Gavin to start his recovery outside of the hospital. He still has a tear in ureter and bladder, so he has 3 drainage bags on until they heal. We have been trained up on how to manage them ourselves.

We have a job to do and build him back up now to his old chubby self again, but we can do this much better outside the hospital.

We have also just moved into a rented apartment, which is close to the medical center so we have a bigger space.
And the best news of all is that Conor and Lucy are coming over this Friday…WOOOOHOOO. Jayne’s sister Deborah is flying them over.

We miss them so much. It’s been nearly 6 weeks now, and even though we speak every night, it’s just not the same. We cannot wait to see them, my god they will be killed with love and hugs they will not know what hit them:)

So the plan for now is to have regular visits to the hospital for checkups and check how Gavin's bladder and ureter are healing. We cannot start his chemotherapy until they are healed better. We are unsure yet if he will require more surgery to fix them.

So at long last we are now on the road to recovery and, more importantly, back on the road home to Ireland.

We are missing everyone back home a lot especially all our friends and family, but we are being well looked after by our extended Houston Irish and Police families, they are amazing support to us.

Gavin when we told him we were leaving the hospital

Gavin and me chilling in our apartment  

Childhood Cancer

Childhood cancer

Our children are our angels,
A true gift from up above.
From the moment that we see them,
Our world is flooded by love.

In life now all that matters,
Is their safety and their health.
Not everything that came before,
Like sleep, nights out or wealth.

Then suddenly from out the blue,
A bolt falls from the sky.
Your family life just falls apart,
And you can't help wonder why?

An existence you knew nothing of,
Suddenly , becomes the norm.
You forget what life was like before,
You walked into this terrifying storm.

You sit beside your baby,
Feeling helpless as can be.
As nurses fight to help them,
And you pray a silent plea...

Why is this happening?
What can I do?
How do I take this pain
and suffering from You?

The truth is there's nothing,
We as parents can do.
But support and gain strength,
From the childhood cancer crew.

For many their battles,
are far too relentless and long,
As they pray that they will one day,
Be free from cancer's evil throng.

We are thankful for survivors,
Those children who've won the war.
But we remember those who fly high above,
through the skies they soar.

There's many that still believe,
that "this won't happen to me!"
But the day before my child was ill
I too had failed to see...

That childhood cancer happens.
It doesn't care, who it strikes next.
But please be aware of its poison,
And it's poisonous effects!

These children and their families,
Fight their battles hand in hand.
We will one day discover a cure,
And united we will stand!

Not an easy week for Gavin

So much can happen in a space of a few hours and days..
After our last update of Gavin walking in the hospital he became unwell.

His tummy became swollen again and we didn’t know why. The medical team checked Gavin and found that there was a problem with one of the tubes that was draining the urine from his bladder. This caused a build up of urine back into his urethra and then spilled out through a small tear into his stomach.
The pressure caused Gavin to not breath properly and this then caused fluid on his lung.
As you can imagine, we became very scared but the medical team dealt with it as soon as they could.
Gavin was then scheduled to have an operation on Monday to place a tube into his lung and also into his stomach to drain of the fluid and urine that had built up.
We were upgraded again into the ICU department so they could keep a constant eye on Gavin.
All week the new tubes have been removing fluid but the medical team thought it would be better to drain off the urine from the kidney which would give his tummy and urethra time to heal, so today Gavin had another procedure to insert a tube into his kidney called a “Nephrostomy”. This was done today at 4pm and Gavin is now comfortable. He will have a few tubes now until everything is back working as normal again.
It has been a huge rollercoaster week for us and not something we, or anyone thought would happen but it did. But we hope we are over the worst of it now so back to Gavin’s recovery and building him back up and walking again.

We have had lots of support this week from our Irish friends in Houston and the HPD (Houston Police Dept) who have been in to check on Gavin ever other day so that has really helped us.

And today we received some cards and presents form home which couldn’t have come at a better time.
Below Gavin’s new Fairy Door from (The Fairy Door Company in Ireland), which he named “Max”, arrived and is a great addition to his hospital room. He also got some lovely get well cards (one from his girlfriend Niamh which made him smile ) and 2 massive posters that a man called Joseph Mc Corvey dropped in.
He put all the get well wishes from his friends all over the world sent to Gavin on a poster…it’s really amazing to see where people are sending message from. Lots of love in the world for our SuperGavin we really appreciate it.
We are all looking forward to watching our friend Conor Mc Gregor win his fight tomorrow, that will put us all in good spirits

look who is up walking around..

Look who's up walking….Over the last few days Gavin has increased from 20 steps to 50 steps and then today walked all the way to the playroom and also most made it back again. He is still very sore but we need to push him a bit now to get up and moving. We knew he could do it, and he sure did.
They have started Gavin on IV Food now too which is getting pumped directly into his tummy and he is taking it very well so tomorrow we will try introduce some solid food in small pieces and see how that goes.
The medical team are very happy with his progress and recovery so far which is great news. They took off his dressings yesterday so we have seen the stitches down his chest. It is big but very clean and Gavin doesn't mind it.
Every day he is getting stronger and stronger and by next week he will be running down this corridor.

The last picture shows a bell in the Children's Cancer Ward, its just brilliant and cannot wait for Gavin to ring it.

Miracles do happen..

We are in ICU department now with Gavin. We are so happy to share some good news with everyone for a change.
The Amazing Surgeon Dr Hayes Jordan and her team were able to remove both tumors from Gavin's pelvis and also preform the HIPEC Treatment as planned.
We had been told that Gavin's bladder and Colon would have to be removed and he would have 2 permanent bags but when they went in they were able to get them out without touching the bladder and colon.
We really believe what has happened today is a miracle and it is down to everyone's prayers and positive thoughts being answered for Gavin and the medical team involved, for that we cannot thank everyone enough..
We still have a long road ahead in the coming days and weeks and months to make sure everything is gone for good but for now everyone should know how happy we are and it is all with your help, donations, support,
Prayers and positivity that our boy Gavin is with us today. Thank you to each and every person...sending you all our love and thanks John, Jayne and SuperGavin.

Just before going into Operating room

Resting in ICU after nearly 11hours operation

Our last night together for a few weeks

Well Gavin has just gone asleep, this will be our last night sleeping together for the coming weeks.

The last few days have been hard as Gavin has had some pain. We found out from the MRI scans that the tumor has grown since we were at home and is pressing against his bladder and nerve on his leg, so this has caused a lot of discomfort over the last few days.

Tomorrow we will be admitted to the hospital for 8am, and then Gavin will need to drink 2ltrs of a solution which will clear out his system in preparation for surgery on Tuesday morning.

We have been told that the surgery is now more complicated than we first thought and will take between 10-12 hours. Jayne and I will take turns staying with Gavin every night and both of us will be with him every day. He will be in ICU after the operation for at least 1 week.

We have some long hard and scary times ahead of us but we will be strong for our little Superhero Gavin. This is his and our biggest battle so far and we will win…

We know we have everyone behind us which gives us massive strength to battle the fight ahead.

We want to thank everyone your kind messages and support at home and in Houston everyone has been amazing to us.

Please keep Gavin in your prayers and thoughts over the coming days and we will update everyone once he returns from surgery.

Sending all our love, TeamGavinGlynn all the way… John.

Kisses from Gavin (after having a blue Candy Floss)

Not a good day today

Well today didn't go as planned…

We had arranged a day with the Sheriff Department with Gavin but when he woke this morning he wasn't feeling well. His stomach was very bloated and as the morning went on it just got worse and worse. He had serious pains and was screaming and crying which isn't like him at all. 
We ended up taking Gavin into the emergency room as it got so bad .
They kept us in for the day and took some X-rays and it seemed like a build up of gas, sounds crazy my god he was in so much pain we didn't know what was wrong with him. It could also be from all the new food, So we got some medicine now for the next 48 hrs which will hopefully get rid of it and the pains. 
Tomorrow we meet the Surgeon to discuss the plan for next week.

Jayne trying to keep Gavin's mind off the pain

Gavin fell straight asleep after his X-ray 

MRI and X-Ray today

We had a rough night last night before we even got up. Gavin woke about 3am looking for a bottle and a drink but we couldn’t give him anything as he had to fast from 12am. He wasn’t happy at all and it took a long while for him to settle back down again. We hate not being able to let him drink or eat especially when we are trying to build him up as much as possible for the coming weeks procedures.

Then we were up at 6 am, as we had to be in the hospital for 7am for our first appointment, then down to the MRI department for 8am.  We tried to entertain Gavin as much as possible to keep his mind off thinking about food or drink, very hard but we are used to it now.

Only one of us could bring him into the MRI room so we normally take it in turns so I went in today. Gavin was great and knows the “milky medicine” will make him go asleep, he doesn’t mind it, and actually he likes it, which is a bit scary.

He took out his Central Line himself and gave it to the anesthetist, and within 30 seconds he was asleep. I held him in my arms and just spoke to him until he was fully under then gave him a big kiss and told him I loved him.

Gavin was under for about 1:45mins then he was in recovery for another hour. He was very groggy when he woke and took a long while to come full around. He also had to have an x-ray on his chest. Then we got back to the hotel about 3pm.

Since he was so good after a really hard day we went and got him some presents.

2 more appointments tomorrow but we should be finished by 1pm which will be good as there is a surprise in store for Gavin tomorrow…. he is having a visit by some of Houston’s finest Police Force.

Bit of messing before Gavin's MRI

Add caption

Gavin in recovery

Gavin's present, a LAB kit..The next big Cancer Pathologist I think

Day 1 in MD Anderson

Hi All

Day 1 over. We were up about 7am this morning getting everything ready for our full day of appointments in MD Anderson.  Gavin had seen the hospital from our hotel room window and asked why we are going there and we told him “this is the place where they will get rid of the thing in your tummy (the black thing as he calls it..)

We went to the hospital and were met by a lady called Tiffany who we had been in contact with from home and who is a volunteer for Livestrong. We had to fill out lots of forms to register Gavin for the day ahead.

Everyone we met so far has been so nice and friendly even all the other people/patients in the hospital.

We met all the members of Dr Hayes Jordan's Team to discuss Gavin and what he has had to date and what their thoughts are.

At 4pm today then we met with Dr Hayes Jordan who is the surgeon that will preform the surgery and HIPEC treatment on Gavin. She was amazed by Gavin and they way he currently looks. Think all the nurses and doctors have took a shine to Gavin already. Dr Hayes Jordan was amazing and really explained everything in detail which was great. She really understands what and why we are here. Gavin told her about the “black thing in his tummy” and she said “well we are going to get rid of that Gavin”…and we are sure she will.

Tomorrow morning we have to be in the hospital for 7am as Gavin is booked in for his first MRI Scan, he will also have to fast from 12 tonight so no food or drinks past 12pm which is hard but we are used to it now. We have told him what’s going to happen and he is fine with it.

So far we are delighted and really impressed with the staff and hospital, they are all so professional but most of all make us feel very comfortable…

We received this card from the hotel staff after the met Gavin at dinner last night. They sent a present up to the room for him also. So nice..

Getting ready for the day ahead

Big high fives for a great 1st day

Houston TeamGavinGlynn have arrived

Well after a very long day we are here.

Just a quick update to say we arrived safe and sound. Minus 1 bag but it's coming in the morning.

Aer lingus made the long part of the journey so comfortable for us all they were amazing and so nice.

We were met at the airport from a friendly face who drove us to the hotel and had loads of goodies waiting which was amazing.

Gavin is wrecked god love him he only slept for 1 hr on the plane..

We have tomorrow to get our barings and then 1st appointment is 9am Wednesday morning.

Thanks everyone for your messages and support. Now for some sleep...

In the cockpit when we landed.