Grace M

13 October 2016

Story written 2016

Grace was diagnosed with acute lymphoblastic leukaemia in June 2016. She had been suffering from breathlessness, pains in her legs, a rash on her legs and high temperatures. Grace went for blood tests one morning and at quarter to three that night the out of hours doctor knocked on the door with the findings that said we had to go to A&E, as the bloods were wrong.

Grace will have two and a half years of chemotherapy and treatment. She is currently spending lots of time in hospital as she is in the intensive part of the treatment.

Update 2nd September 2018

Grace had her LP and bone marrow check on the 22nd of August and it’s all come back clear and final chemo was the 26th and we had the biggest party ever!

We would like to thank post pals from the bottom of our hearts for all the help and support throughout our tough times.

Grace starts Secondary school on Tuesday and rings the bell tomorrow! (Monday) We would like someone else to become a pal now and in time we would like to be the one sending the well wishes. Take care and see you soon.

Update 10th October 2017

Grace is in maintenance and is doing well, currently. Grace still needs phosphate as a supplement which is nasty to take and still takes posaconazole as a precaution, because of a fungal infection early stage treatment, but which allows her to see her pony. We have had two visits to hospital this week as Grace has had a racing heart rate and pain in her legs. All okay now, although Grace does have a cold, but has also been on 100 percent chemo for many weeks. Hopefully this will be reduced to 50 per cent tomorrow.

Grace has just got a new pony as she has outgrown her other pony, so we have put her on loan.

Update 15th February 2017

Grace is now in maintenance and hopefully can have her Hickman line out in the next few weeks. Unfortunately when Grace had her lines removed previously the surgeon found a blood clot when putting the new ones back in and so now twice daily Grace has an injection of enoxaparin which has been bruising her leg quite badly. Presently the NG tube is out and Grace is trying her best to keep eating and so avoid having another one put back in. Fingers crossed Grace keeps well and continues to get stronger and keeps going on the tablet chemo.


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James W

13 October 2016

Story written 2016

**Please do not send James flowers, latex balloons, food or unsealed sweets**

James was diagnosed with Fanconi anaemia the same time as his sister in 2011. Fanconi anaemia is a life limiting blood disorder. This causes bone marrow failure and a higher chance of head and neck cancers.

Fanconi anaemia has caused James’ bone marrow to fail and he has been transfusion dependent for the last six months. He has an admission date for a bone marrow transplant on 21st November.

Update 22nd July 2017

I think it is time for James to move on from Post Pals. There are so many children that need the smiles put back in their hearts.

Thank you for all you and your team have done for my children during treatment and recovery.

We will still support you anyway we can.

Update 28th April 2017

Day +23 and 5 weeks after admission I need to share that we were told today that James has 100% engraftment (donor cells)…..Not only that, his counts are going up steady enough for us to go home next week!
It feels too soon, too quick to be leaving the amazing nursing team and doctors here looking after James, but I guess its normal to worry. He has managed to get here with no signs of stress on his pelvic kidney or liver. One scary reaction to a medication dealt with promptly, and has not needed a transfusion this week. Just wow!

He still has a long way to go. We will be coming home with a rather large variety of daily medication and a feeding pump to ensure he gets the nutrition and hydration he needs. He is still in isolation at home for a few more months yet. We have weekly visits to GOSH to keep a close eye on him.

So proud of his courage and ability to stay cheerful and make us all smile.

Update 17th January 2017

We had a lovely quiet Christmas. The children were amazed at the lovely gifts and cards sent to them, thank you to everyone. The handmade activity book Emma just adored and spent a long time playing with it. Crafts were a great thing being stuck indoors most days in the cold weather especially when immunity is low.
We managed to stay out of hospital over Christmas but James went in on 2nd January with a high fever. We were there just a few days getting blood transfusions and IV antibiotics. Back to Great Ormond Street tomorrow to find out when his transplant will be. Emma is still suffering postherapetic neuralgia from shingles, her skin has almost healed but the sensation of pain and itching is still there. Her hair is growing back well now and she loves putting clips in her hair to show off her new earrings.

Update 1st December 2016

Sadly James’s donor was not able to donate for medical reasons which has meant his transplant has been delayed. We have just heard that two 10/10 matches have been found in the UK and we are waiting to hear if the donors are well and willing to donate.
James has been off school most of October and November due to illness at school. His sister Emma has also had to deal with a bad case of shingles from stopping antiviral medication. She now has postherpetic neuralgia pain but is recovering.
We are looking forward to Christmas together.

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Jude A

02 October 2016

**Please don’t send food or drink**

Story written 2016

Jude was born at 28 weeks’ gestation with severe lung complications. Sadly, shortly after he started to feed he developed problems with feeding and failed to thrive. He fed via jejunostomy for 2 years until he could no longer be maintained nutritionally this way and he started TPN. It soon became clear that fluid volume and electrolytes were an issue and Jude requires huge amounts of both to remain stable. He has to be on TPN 24 hours as he becomes hypo very quickly and cannot grow. Sadly, he has developed portal hypertension and his liver is affected. 9 months ago he listed for transplant after many bouts of line sepsis. He has had an ileostomy formed which has caused many problems as he instersucepts through it requiring a general anaesthetic to reduce. He has had total colectomy which has helped enormously but unfortunately not enough to prevent him from needing a transplant.

Jude is an active little boy who enjoys urban dance and has even won a few competitions! He is very bright and excels at school despite his lack of attendance. He is always happy and takes everything in his stride!

Update 7th January 2024

After a rough couple of months in and out of hospital with sepsis. On the 28th of December Jude received his new organs. He is doing well at the moment but struggling with the severe pain.  

2nd June 2023

Jude is still in hospital and is being assessed for another transplant. It has been a very difficult time but he is hoping to go home soon, please could his post go to his normal Post Pals address. 

Update 30th April 2023

Jude is unwell in the hospital. He had his small bowel resected two weeks ago as it was necrotic and it literally fell apart in their hands. His abdo is still open and he has 3 stomas at the moment. He had a contrast study on the remaining bowel and sadly none passed through, so he needs to go back to theatre to unpick the rest. It’s really sad as we have to go all the way back to PICU again.

Jude still loves Liverpool FC and his favourite thing is anything relating to musical theatre! Puzzles and card games keep him occupied at the moment.


Update 6th August 2022

Jude has just completed his first year of secondary school where he excelled in his true passion of sport. He pushes himself to the limit to enjoy every moment he can!

Unfortunately, this year has brought Jude other challenges with his health including infection that lead to organ rejection. Jude has been horse riding and is participating in his first competition show. He loves all things football, especially Liverpool! He is a social butterfly and really loves to be busy with friends. His brother Oscar is very busy with his boxing and competes at every opportunity (yes I close my eyes) Jude loves it!!!!

Update 7th July 2020

Jude had 6 months without an admission but sadly became unwell last week and had to go into hospital and we have been coming and out since. His day to day is still tough with ongoing dumping syndrome which we manage we IV fluids. He suffers with hypoglycaemia.

Lockdown has been good for Jude as he has been safe from viruses in the community and I think this is why we have had such a great period out of hospital!


Update 7th November 2019

Jude’s been getting back into going to school for the first time in almost 3 years. Getting funding for the right care at school has been extremely tricky. 

Jude continues to benefit from his transplant although is currently in hospital before surgery as he has what appears to be a hernia. He will finally get a gastrostomy and be able to remove the big NG tube. 

Update 3rd April 2019

Unfortunately Jude is in hospital at the moment and rarely has even a few weeks at home. Jude continues to be septic regularly and is difficult to manage.

Obviously he received his transplant June 1st and his life has changed as he can now eat tiny amounts but developed dumping syndrome which makes life very hard as his blood sugar levels are affected. Jude has developed adrenal insufficiency. Life is very complicated and it’s a very difficult road post transplant.

Update 15th November 2017

Jude is currently in hospital at Great Ormond Street with a fungal sepsis and has been very unwell again. He is still unable to attend school so is really missing his friends. Today is day 677 on the transplant waiting list x

Update 15th October 2017

Day 646 on the waiting list. Jude is now on an an IV regime which is quite hard for Jude as he has to sit still! Not an easy task for him. He is cycling IV antibiotics and antifungals now to try and keep him well for transplant. He has been septic so many times this year and it’s just not safe. He is desperate to get to school but this is so complicated on this IV regime that he continues to be home tutored (he desperately misses his friends).

Update 5th June 2017

Jude has been extremely unwell with septic shock. He is still awaiting transplant day 513! He is unable to attend school full time as we currently don’t have enough nursing. He attends once a week so is desperately missing his friends.

Update 15th February 2017

Jude remains on the transplant list. He has been home from hospital for three weeks after a long admission which kept him in over Christmas.
Sadly Jude is unable to attend school at the moment as he has no nurse to take him and education have yet to put a tutor in place so he is quite bored!

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