Maggie and I would like to share something very personal with you.

Our beautiful 13 year old grandson, Clayton, was born with heart defects that have deteriorated as he has gotten older.

He has spent a lot of time in and out of hospital and now things are so bad that the only way forward for the little guy is a new heart.

Yesterday morning he was flown by medical transport from Brisbane to Melbourne to be assessed for a heart transplant.

Not long after arrival clay had two significant Ventricular tachycardia episodes and is now in the ICU at Melbourne Childrens Hospital

Sadly for all of us the coronavirus has separated us from him at this time.  Bek and Clay are down there on their own and Mat and their other two young boys are still in Brisbane.

His Mum, Bek, has set up a personal blog on Facebook to keep family and friends updated on how he is going and the link is below.

The page also has a link to a Go Fund Me page that Bek has set up to raise funds so the family are able to be together as much as possible.

We are told he could be down there for anything up to six month.

Please join with us all in wishing Clay a safe journey towards getting his new heart and a very positive outcome from all of this.

As soon as COVID permits Maggie and I will be driving down in the Motorhome to be close to them so we can visit.

Thanks.

https://www.facebook.com/The-road-to-a-new-heart-631680990800542

Derek sorry to hear this know the pain of hurt and love for the grandkids. Our best wishes are with you for the family.

Robert and Molly

Sorry to hear Derek but he is in the right place now it seems. Our Thoughts and prayers go out to Clay and all the family during this difficult time.

Jeff & Jude

Hi Derek
Very sad to hear that news. I really hope everything goes well for him. I know he will have loving support from you, Maggie and his extended family.
regards Kev

We wish Clay and his family all the best.

Done.
 
Prayers for A good outcome.

Very tough times for everyone not only Clay; our thoughts are with you and we send our love to all.
Murray and Judy

What a shitty week.

On a positive side Clay is getting good treatment at the Melbourne Children’s Hospital

On Wednesday my daughters Grandmother (my first wife’s mother) passed away.  She naturally was also Clay’s Great Grandmother.

Bek is stuck in Melbourne and due to COVID is unable to return to Queensland for a funeral and has no family down there to support her during this horrible time and we cannot get into Melbourne until COVID restrictions are eased.

Have seen many similar stories in the press regarding separation of families due to the COVID rules and border closures but never ever thought it would hit us like this.

Not a good time for the family Derek; we hope things improve on the Covid front rather quickly.

An update on our Clayton.

He is still in Melbourne however left hospital yesterday to move into hospital accommodation.  This is just over the road from Melbourne Children’s Hospital.  With his Mum being a nurse they have allowed this but she does have everything she needs including a defibrillator if needed.

The sad thing is things are not going too well for the little bloke.  All of the testing has shown that his lungs have deteriorated to the stage where they would not cope with a new heart.

This means that he now needs a heart/lung transplant.  In Australia these are rarely done and they only do 1 or 2 a year in Melbourne.  In fact globally there are around 10 done a year.

For us all as a family it is currently just a waiting time until they can get everything in place and then they need the donor heart and lungs.

Border closures and Victorian lockdowns mean we cannot even get down there to see him.  That is one of the hardest parts.

Maggie and I are ready to go as soon as something changes on the borders.  We have Maggie’s daughter due with her baby (our 14th grandchild) in early December and don’t want to get down to Victoria and find we cannot get back for that either.

2020 has created hard times for many and now us as a family.

Sad news indeed Derek, hope all goes as well as it can, will be thinking of you and family.
Rory.

Hello Derek
All the very best Clayton and his extended family
regards  Kev

Thinking of Clayton and all his family.

Our thought are with you and your family.

Sorry to hear Derek. Hope it all works out for Clay

Our thoughts and prayers for Clayton and all the family.

Prayers for Clayton from our family.
Keep your chin up, Derek and Maggie!

Great news today.  The powers to be have finally agreed for Clayton to undergo the heart/lung transplant.

He is now on the waiting list for the operation and waiting for a donor.

Grim for sure but also exciting for the family.

Just need these bloody Premiers to agree on the borders so we can get to see them.

The borders are such that we could go down there but still cannot return to Queensland without going into hotel quarantine.

We also have our latest grandchild due in a few weeks here in Brisbane.

Hi Derek
That is great news for Clayton. I hope it happens very soon for him. And all goes well for the new bub.
It is a shame they cannot make an exception  for a visit.
regards Kev. ;)

Now that the borders are open and restrictions have eased Maggie and I are currently organising to get away Monday driving to Melbourne in the motorhome.

Have booked into a caravan park at Braybrook which is only 8.5 kilometres from the hospital. Going to wing it going down so might just camp on the side of the road  :D

Only got 17 days before we have to be back home for medical appointments that cannot be cancelled so going to be a bit of driving but expect we can spend at least 7 days with them down there.

Hi Derek
Yes great news mate. I bet Clayton and his family are excited
about you and Maggie are coming to see them
Have a great trip and stay safe
All the very best
regards Kev

Have a safe trip Derek.

Take care mate and safe driving cheers Robert

We are free camping tonight in the car park of Brown Brothers Winery at Milawa, Victoria.

Three hours travel tomorrow to get to Melbourne.

We travelled through the heat wave. The car outside temp gauge showed 44 on Monday and 42 yesterday.

The water in the motorhome tank was too hot to shower at night.

Much cooler here in Victoria, only 24 degrees today.

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Hi Derek
Thanks for your travel report. Sounds like a good spot to camp. No good about the heat, Not long now before you see Clayton.
Good luck with the rest of your trip.
regards  Kev. ;)

Take care mate the heat is no good, glad to r3ceive reports and photos of your stop overs. Cheers Robert

Glad all has gone well and you will soon meet up with family.

This has been home for the last week.  Been an amazing time with Bek and Clay however our own medical appointments in Brisbane dictate a return.  Car is back on the trailer and we are heading off in the morning.

The young fella is still going backwards however in good spirits.  Terrible time for all the family.  We were able to take him out during the week and that was fantastic.

Planning to return as soon as we can after Christmas

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Hi Derek
Thanks for the up date. Appreciate the photos.
Take care on your return home.
regards Kev. ;)

Stay strong Clay and family. Have a safe trip back Derek.

I haven’t posted here for a while but I think a lot of you would be aware that we are down here in Melbourne supporting the family.

Sadly Clay’s condition is still deteriorating to a critical stage and unless he gets the heart/lung transplant soon we may not have home with us.

Here is what our daughter wrote on the little Facebook Group for family and friends today.


Quote:

As I have written before Clays type of condition means he can't go on any external machine (such as the Berlin heart) and he is deteriorating rapidly.  The last 10 months I've sat here basically watching my child die. I knew in my guts he was getting really bad the last 4-6 weeks and have mentioned this to family and the drs. Friday we were called in after the heart failure team received his latest Holter monitor results. It was bad news. He is constantly in and out of ventricular tachycardia and atrial fibrillation with rarely a break. He is having over 20 episodes a day with heart rate ranging from 40 to 200. He sleeps 15 -20 hours a day. Each episode leaves him with numb hands and feet, pain in his head, he goes a purple ashy colour, feels faint and at times severe chest pain.  It is scary for him and exhausting. He cannot walk from the toilet to bed without having to stop and get his breath. He is really struggling. Previously a pacemaker was not an option as it was way too risky. They have now given us this as an option as they are getting desperate trying to keep him alive for transplant.  The options are doing nothing with a high risk of death and very quickly not be suitable for transplant or doing the pacemaker with a high risk he will not recover making his deterioration faster and once again not suitable for transplant. If he makes it, the pacemaker could give him more time or it could decrease his quality of life. Because of his condition it cannot be done with a general anesthesia,  it would have to be a local. Its not good odds either way and we question if we want to put him through that trauma to not make it to anyway. The amazing consultants and their team, who have become almost family members, can't even push us in a certain direction like they usually do because they simply do not know which way to go.  We have till Tuesday to make the decision.  We wait any longer and he could deteriorate to a point he will not be suitable for a pacemaker.  Although the risk is high we are leaning towards the pacemaker. If there is a slither of hope it will give him more time we feel we should take it but the fear of the unknown keeps us flipping between decisions. If we decide to go ahead, the consultants want things to move quickly.  I can honestly say I have never been this terrified in my life.

If you are a praying person we ask that you say a prayer for the young bloke.  This is going to be a hard week for us all.

Hi Derek
Sad news mate. Our prayers are with you and your family
at this time
regards Kev ;)

Derek we are sorry to hear that news, all Bonnie and I can say is like everyone, we are thinking of you and your family.

Derek our thoughts are with you,Maggie,Clay, Bec and all the family. Brian and Sharon.

Sorry to hear Derek. My thoughts are with you and your family.

Derek our thoughts to are with you and your family and hope that help is not far away Robert and Molly

Derek our thoughts and prayers are with you, Maggie, Clay, Bec and all the family at this most difficult time.

Jeff & Jude

For those of you following our Grandsons story over nearly a year now, yesterday was an amazing day for all of us here.

Clay finally got the heart and lungs he needed to survive.

Here is my daughters post on the Facebook Page that was set up to follow his progress.

On Tuesday the 27th at 8.30pm we finally got the call that they have a heart and Lungs for Clay. We had to come to the hospital at 5am to prepare for surgery. Naturally I didn't get a wink of sleep, Matt got an hour. Unfortunately due to Covid restrictions Mat couldn't be there. By 10.30 I was doing the hardest thing I have ever done. I kissed my boy for the last time and walked out of that theatre leaving his life in their hands. The first few hours were easy. I think we were still in shock it was actually happening. After that it was a mixture of fear, excitement then fear again. His surgery went longer then expected which had me sick to the stomach with anxiety but when the surgeon finally called it was great news, Clay went absolutely brilliantly with only 1 problem. When they closed him up the lung pressures were too high due to them being a little too big. They had to re open him and resect them to fit. He went straight to ICU and is in an induced coma. By the time Mat got up to ICU to see him the lung pressures had already settled and his new heart was starting to beat its own rythym by itself. We just got an update this morning from his nurse that his new heart is already beating by itself with no assistance. In typical Clay style he is kicking goals and amazing the staff with his strength. Mat and I are so thankful for all the support and prayers. He is not out of the 24 hour danger period yet but I have alot of confidence in him. To say we are proud of him is an understatement. Jake and Sam are just heading off to school then we are heading up to the hospital to hear what the plan is for him today.

Hi Derek
What great news.
All the very best to Clay for the  near future.
A very special thankyou to his medical and nursing team.
regards Kev ;)

Now the road to recovery then the road home.
Safe travels Clay.

Certainly great news mate speedy recovery for the lad. Robert

Good news indeed.

That is good news. But sad in another way.

Yes John, we will always be mindful that for Clay to have a life someone else lost a life.  While we rejoice another family grieves.

We saw the good news on Facebook this morning Derek. Wonderful news and we pray for a trouble free recovery for Clay.

We are mindful of another family's loss too.

Jeff

My daughter ended this today.  As a family we are all so grateful and relieved.  While we have been unable to talk to him Bek did send us a short video.

3 weeks ago to the day they put him to sleep but today we finally got our boy back. It's still early days but he is having conversations with us, eating and already bossing daddy around with what the watch on the tablet (Eddie Betts greatest moments). It's surreal having normal conversations after the weeks of hullucinations and confusion. Fingers crossed we have seen the last of the ventilators and sedation.

Yes great news indeed!!!

Jeff

Happy news!
Thankful for those who give...

Real good news
Kev

that is good news. :)

Clayton is finally out of hospital and recovering quite well.

The family are currently living in the Fitzroy Ronald McDonald House in Melbourne.

Around 12 weeks from the initial operation they will conduct a series of tests to determine if he can return back to Brisbane to be managed by a local team of doctors.

Hopefully we will have them back home as a family by Christmas.

We saw the great news on FB Derek. That would make a wonderful Christmas present having them home for Christmas.

Jeff

What champions Clay and his family are.
Hopefully they are all home for Xmas.

Real great news
regards Kev

Answer to prayer

Great news Derek, glad to hear

Just an update.

Clay is doing really well.  He has been cleared to fly and all preparations are falling in place for the family to return to Queensland where his progress will be managed by a medical team in Brisbane.

He was returned to hospital following a seizure however they believe that was a one off with no long term issues.  As a result of that the whole family are currently in hotel quarantine as someone on the ward at the Children’s Hospital had COVID.

Our biggest issues are the current border restrictions as the whole family are not receiving any special exemptions by the Qld Govt to come home.

Fingers crossed that they will be back before too long.

Good news Derek hope they can be home soon Cheers Robert.

Hi Derek
That is Good News. We will keep everything crossed.
Kev

If everything comes together as it should we have the date of 5 Nov for the family to return.

They will be in quarantine for two weeks from then when they get here unfortunately.

Looking good.

Great news!!!

Jeff

Hi Derek
That is good news mate.
regards Kev

Good news mate time will fly at lest they will be home for Christmas Robert

It's been a long journey.
Great news for Clay and all the family.

All approvals have been received and our family will be home in Brisbane next Saturday.

Won’t be able to see them for 14 days after that as they will be in home quarantine.

That is good news.

Excellent news!!!

Jeff

Hi Derek
That is pretty good news.
regards Kev

Haven’t posted here for a while however Clay is going along great.  A few minor setbacks but a overall he’s pretty good.

Last weekend the Adelaide Football Club (Clay is a huge fan) hosted the family on the Gold Coast.

Here is an article about it.

https://www.afc.com.au/news/1153652/double-lung-and-heart-transplant-won-t-stop-crows-super-fan-clayton

I bet everyone enjoyed that.

Great read.
We are so pleased he is doing as well as he is.

Would like to share with you all something personal.

What a proud, exciting and emotional day it was today to see Clayton graduate from High School.

From the moment we walked in the door to see his name on the Honour Board as the 2025 Indigenous School Captain.

To the receiving of his Graduation Certificate and to witness in amazement as the School Principal awarded him the “Spirit Of Pines Award for Bravery & Overcoming Major Hurdles to Graduate”. 

To see his acknowledgement as a First Nations Graduating Student.

I know I had tears in my eyes as did many others.

I think you may all be aware of Clay’s Journey.  It has been a hard struggle not just for him but for all of us as family.  His struggles are far from over and today his Mum (my daughter) Bek penned this about his journey.

“At 2 they told us he wouldn't make his 5th birthday. At 13 they told us he's dilated cardiomyopathy had become restrictive and he was in end stage heart failure. They told us he would be lucky to make it till his transplants. He couldn't have a VLAD and was in almost constant VT. A year and a half later he got his heart and double lung transplant. It didnt go as planned. He lives with many complications that make life harder. Last month we were told he was in chronic rejection, they can't stop it anymore. Today was his high-school graduation. He won the spirit of pines award for bravery and overcoming major hurdles to graduate. Don't accept when they tell you it won't happen. He beat all the odds. Even though his time on earth will not be long, he will never be forgotten. Hes attitude is the big reason for that.There were not many dry eyes today from school staff and family. We are so proud and blessed to be his parents. Thank-you to Cath, Tanya, ARTIE, indigenous support and every pine river staff member that helped get him here. From the bottom of our heart, thank you”

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Wow. Congratulations Clayton.
I have been following Clayton's journey through your posts Derek.
I wish him well for his future.

Well done Clayton
I hope his most difficult years are behind him.

He sure has grown.  Looking good at his end of year formal tonight.

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Thanks, Derek, for your update a great achievement
Muzz and Judy

A great achievement, he and his parents must be proud.
Bonnie and John

For those who followed the journey, yesterday marked five years since Clay received his new heart and lungs.

He is still soldiering on.