Our Pal - Matty W
NB: this is a forwarding address, we do NOT disclose home addresses
- Parents/Guardians - Jackie and Andrew
- Interests - Swimming, flying his stunt kite, surfing, cycling, riding his quad bike, gym club, playing BTA and Battlefield on his laptop, skateboarding, football.
- Favourite Colour - Blue
- Able to read? - Yes
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - No
Siblings - aged 3 to 16 wishing to receive post
About - Matty W
Matty is on the “Moved On” page as he is doing really well, and his family are following their dream of moving abroad, and are now living in France.
Story written 2004
Matthew was diagnosed with AML in June 2003, he had a bone marrow transplant in September 2003,which was donated by his sister Emma.
We spent 5 months staying in Bristol Children’s hospital and were grateful of the support given by CLIC house. He also needed surgery after fungal infection damaged the palate of his mouth. This problem will be corrected at a later date.
Matt has now been diagnosed with the Bronchiolitis obliterans organizing pneumonia (BOOP), which relates to the graft-Versus-Host disease in the lungs. He’s doing well and still needs to go to the hospital for treatment and his reaction to the transplant is continually being monitored.
Update December 2005
Matty continues to do well, and is enjoying his life in France (as is the rest of his family), he his last scans were clear, his hormone tests show improvement so his Hydrocortisone might be reduced, best of all Matty and Emma are just enjoying being kids.
Update 15th February 2005
Matty’s surgery went well; he went home the same day.
It is hoped this is now the end of his very long journal in his battle against cancer. Matty and his family are moving to France this week so will no longer be receiving mail from Post Pals. We wish his family all the best, and a very happy life in France.
Update 1st February 2005
Matty is not due back to Clinic until MAY! Reaching 3 month clinic appointments is a huge milestone, which everyone is very happy about. They are confident his GVHD has been and gone! Matty needs to stay on a maintenance level of hydrocortisone as his Adrenal Gland tests show little production of national steroid-this is probably linked with the problems Matty had with his Sodium lever at the beginning of treatment.
Matty had his surgery to repair the hole in his mouth, it was hoped that this is the end of his long journal with his health, how ever it didn’t work so poor Matty is having more surgery on Friday, they will use stronger stitches- if it doesn’t work then he will still have to wear his plate and have it operated on in about a years time. We will keep our fingers crossed it works.
On a sadder note, Matty’s good friend Dave passed away, he is understandably upset at losing another friend.
Update 31st December 2004
Matty is still doing well, and had a good but quiet family Christmas. He is due to have CT scans this week. Sadly a friend he made while in hospital is very ill, Matty is understandably upset to be loosing another friend, so I’m sure a little tlc would be nice.
Update 8th December 2004
Matt is now back at school after his op and is doing well.
A lot has happened this week;
Tuesday – Meeting with the Endocrinologist from Bristol. Well, it seems that the test results showed that Matt’s Adrenal Gland is not producing ANY Cortisone! So now they are reducing the Hydrocortison, which they seem optimistic that will KICK start the gland again?
Wednesday – Clinic- As per usual Matt wouldn’t bleed! After three attempts and by this time Matt was Tackacardic and sweating! It was decided that we should come back to the ward on Friday for a re-try! The meeting went well, and the consultant is pleased with Matt’s progress.
Friday – Meeting with the Oral Surgeon, he is confident that he can fit Matt in for Corrective Surgery after Christmas! It will involve – wait for it… cutting the inside of the roof of Matt’s mouth and pull the tissue across and then… cutting a semi-circle around the roof and with a cut up the middle and pulling it across the hole!
Matt is fine about all this surgery talk and can’t wait to get rid of the mouth plate that he has had to wear for the last 16months!!! You know what they say “No Pain, No Gain”.
Update 16th November 2004
Matt had to go into hospital on Thursday to be circumcised, poor little chap, as if he hasn’t been through enough, but past treatment has caused it! He was let home the same day, although in pain is recovering well. He will be off school for 10 days.
Update 5th November 2004
ll, the meeting with the consultant went really well. Our appointment was at 1.30pm but as usual we didn’t see him until 3.20pm! This is normal though!
We were told that Matt’s cells have done the job they were meant to do.
They have conquered the BOOP (GVHD)! Also Dr Goulden was positive that the cells have also beaten the Leukaemia!! Matt was jumping with Joy!!
He has KICKED AML’S BUTT!!!!
As to the medication, he will stop taking the Cyclosporin (anti-rejection drug) on the 17th November. We have to watch Matt, we don’t want the BOOP to return.
The Voriconozole will be stopped soon after and the Aciclovir will be stopped in the New Year as there is a great risk that Matt will develop shingles! Plus he might need hospitalisation with I.V’s.
Matt had his Endocrinology Tests on Monday, after having to have a second canula inserted as the first blocked. The results showed that the Adrenal Gland (gland which produces the bodies own Corstisone) isn’t functioning properly. They found traces of Calcium in the Gland and this means that Matt will need to be on Hydrocortisone permanently. He said “it’s better to stay on it than to stop it”.
They are going to re-run the tests to confirm this information. The Consultant thinks this stems from when Matt was first diagnosed, he had SIADH (sodium deficiency).
Matt is now down to monthly blood tests when he goes to the Clinic and we see Dr N Goulden (Consultant from Bristol) early February.
Matt has so much energy he is certainly getting back to his former self. He is swimming every weekend and now he is joining his old Gym Club.
Matt is due to see the Oral Surgeon on the 3rd December. Matt has been seen by a specialist for the Phimosis (Balonitis). It may be that Matt needs surgery (down below) which will hopefully be done before Christmas.
Update 26th October 2004
Mat is still doing well. Endocrinology tests on 01/11/04 and seeing Consultant from Bristol on 03/11/04.
We are seeing Moved On Pal Jamie on Tuesday and Pal Nicole.
Also on Wednesday we are catching up with Dave from Plymouth who we met in Bristol. Dave has invited Matt to go to the Marines Base with him!
All that UNIFORM!
Matt has just received a letter from Make A Wish and they are granting him his second wish of Meeting Robbie Williams!!
His first wish was for a Tropical Family Holiday, but their insurance company declined Matt’s Application?
He was gutted but R.W is certainly his Favourite!
Update 8th October 2004
Some great news for Matty; he no longer has to go to the hospital for weekly blood tests!! They will now be done once every 2 weeks at home by a CLIC nurse.
September the 24th saw the 1 year anniversary of Matty’s transplant. The consultant had told them if Matty got to 6 months they would be happy, if Matty got to 1 year, they would be optimistic, so it’s a huge landmark for them. The family celebrated by going bowling and having a take-away from Asda as that’s what Matty and Emma wanted to do.
They are waiting for an appointment to find out when Matty will have an operation to repair the hole in his palate which was caused by the Aspergillus, and also to see an Endocrinologist to check his adrenal status.
Matty’s mum says he is living life to the full at the moment, and enjoying trying to get back to a “normal” way of life, he is currently enjoying school, playing football, and started Cubs.
A photo of his trip to RAF St Mawgan, organised by Post Pals in May.
Update September 2004
Matty has recovered well from his 2 and half hour surgery in France to remove his Hickman line (other wise known as Mr Wiggly). His CT scans showed no change (which is good), and the ENT department no longer need to see him as they feel the Aspegillus is no longer active in his sinuses but they are waiting to hear from the ENT surgeon as to when they are going to repair the hole in his mouth. His steroids are being reduced, and he will soon be having his childhood vaccinations.
The past 2 weeks they have had lovely weather in Cornwall, so Matty and his sister Emma enjoyed breakfast on the beach every day, and lots of time spent swimming and surfing in the sea every day.
This week Matty and Emma returned to school, they are both happy to be back, we wish Matty the best for a far better school year than last, also for his C2C ride with his family in aid of the Anthony Nolan Trust.
Update August 2004
Matt’s CT scan showed no different to the last!
Matt had his Lumen Line out in Limoges Hospital whilst on holiday!
We have a Consultants meeting on the 01 September, we should find out when they are planning to stop the dreaded Prednisolone and an ENT review on the 02 September, hopefully we will know when they will repair the hole in the Palate?
Matt is doing really well and is looking forward to going into Year 5 in September.
Thanks to all the team at PostPals and we hope that Kat is making an improvement.
Matty couldn’t even have a holiday away from hospital it seems. He and his family went to France, and he was admitted to Limoges Hospital on with a bad line infection which they then had to remove (it’s been in for 14 months).
And then the Post Pals team received this message:
Hi From Windy France!
Thanks for Matt and Emma’s cards we received them today.
Matt had his cannula out today and no more trips to Limoges Hospital as the antibiotics have stopped!
He is like a different boy now he doesn’t have the central line, but what a way to get it out!! 5 days in a foreign hospital.
The staff and Drs were brilliant.
Back home on Tuesday, then more hospital trips to fill them in on what Matt’s been up to!
Love to you all
Update July 2004
Another Friday night was spent in hospital! Matt was putting his bike away in the garage and went to shut the door, but he couldn’t reach so he pulled the side strut of the door which then scissored his left little finger! They had to put Matt under with a GA! On doing this they found that he had damaged the Tendon! So they had to cut down both sides of the finger and repair it. He was down in emergency surgery for two and half hours!!
He has now had the plaster and stitches removed and is getting on well with the splint, back at school and is doing his work on a computer as he is left handed!
Update June 2004
Matt’s CT scan showed some questionable areas, and he is back on the steroids as mentioned before. He has so much more energy!!!
Matt saw the ENT guy again Monday, he looked up his nose with a microscope eeeakkkk! But he was pleased with what he saw, as from the scan they thought Matt needed his sinuses flushed as he had sinusitis, which evolved having a General Anaesthetic. The consultant wasn’t sure if the guy who puts them under would do it, because of the steroids that he is on and also the GVHD in the lungs. But the nasal passage looks better than before so we don’t need to see him for 6 weeks!!!
His counts are good, a little high but that’s down to the steroids.
A trip was arranged to visit RAF St Mawgan at the beginning of June, we had a tour of the School of Combat, Tour of a Helicopter, lunch in the Officers Mess, and visited the Pilots of 203 Squadron. Matty and Emma had great fun using the camouflage paint.
The RAF trip was excellent and a BIG thanks to POST PALS for arranging it!
Update May 2004
Well the results of the scan showed a few suspect areas again! Nick the consultant that he wants Matt to go back on the Dreaded Steroids. As far as we can see the leukaemia is under control which is a good sign as Matt’s counts are stable.
Matt has managed 4 full days at school and is really enjoying it. He even managed to join in the P.E activities!
Update April 2004
We would like to thank all at Post Pals for all the support and post which Matt receives, it really does cheer him up.
Matt is doing really well, no-longer needing to go to Hospital daily. The CT scan showed an area at the bottom of the lung which they say is due scarring, hopefully it will correct itself but there could be permanent damage. The have been reduced and his weight is slowly moving down again, just blame the STEROIDS for his mood swings!!!
All the breathing results came back ok, but again the exchange value of the lungs weren’t as good as they should be but again they could get better, they said that Matt won’t be able to become an Astronaut or do deep sea diving!
Matt went to school for the first time last Monday after Easter and stayed all day, he had a great time catching up with all his school mates and he settled in with his new teacher fine! As he was in year 3 when he left and now he is year 4.