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 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

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 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

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 15th February 2017

Jude remains on the transplant list. He has been home from hospital for 3 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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