Story
This is something id hoped id never have to do, but as a family we seem to have hit a dead end. Please help with funding my 13 year old daughters cancer treatment. She has been through so much in the last 2 years she is surely due a break. Please read Shannon's Story.
Shannon became poorly late 2018, after continuous trips backwards and forwards to the doctors she was rushed to Birmingham Children's Hospital on the 28th of November with liver failure. Our entire world got turned upside down. Shannon was a healthy, active 11 year old child, looking forward to starting her new journey at secondary school.
We got told in no less than 24hrs of Shannon been in hospital that she would need a liver transplant and her life depended on it. Shannon's name got put onto the urgent transplant list and then the waiting began. We were backwards and forwards from hospital having test after test, complication after complication and still no phone call. January 2019 we received a phone call, a phone call that not only was going to change our life, but had also massively chanced the lives of another family. This is a feeling that can never be explained, the gratefulness that your child is possible going to get another chance at life, but yet the sorrow for the family whom have just lost a loved one. After high emotions and waiting for a couple of hours we got told the liver Shannon was offered wasn't suitable.
At this moment we didn't know if the end was near, we felt we were back to square one. We started the process to have a live organ donor for Shannon, as we felt this could be a better match and less complications with it been a genetic match. My brother Wayne turned out to be best suited with the same blood group and in shock to us all, the healthiest person the doctor had seen in a while :)
On the 22nd of May 2019 at approx. 8am in the morning Wayne went into theatre at Queen Elizabeth Hospital to donate half of his liver to save my daughter his niece. This has got to have been the most surreal day for us all, we had no idea how the day was going to pan out. At approx. 10.30am of the same day Shannon got the call they were ready for her in theatre, this was the first time since finding out she was poorly that Shannon broke down and cried. My little girl was scared and I felt helpless, the only way I could help was to hold her tight.
Shannon went down to theatre and after 14 long hours of pacing backwards and forwards, not eating and not sleeping we received the phone call to say she was out of theatre but there were complications with one of the arteries but she was doing well. I arrived at the hospital to be with her in the morning and she was unconscious with her body working extremely hard to repair after what it had just been through. At one point one of the PICU doctors did not leave her side for hours as they were extremely concerned. After been in intensive care for what felt like a life time, we were moved back to the ward but Shannon wasn't looking great, she looked better before she had the transplant, We could tell something wasn't right. Her bloods had gone off again, so they took Shannon for a biopsy. Before we had the biopsy results back we were told the artery they were having problems with in theatre had blocked and the liver was dying. How was I to tell my fragile little girl she was going to have to go through it all again, that this wasn't the end.?
To our surprise the following morning (5th June) we got told they had a possible donor for Shannon and she would be having another transplant that day. We honestly didn't have time to think, it all happened so quick. Shannon went down for her second transplant that morning. We were prepared for another long and harrowing day but again to our surprise 4 hours later we received the call to say she was out of theatre and everything went smoothly. We couldn't believe our ears. Within hours of surgery Shannon was sitting up asking for food (Which she couldn't have, much to her despair). We could tell this time she was in much better health.
So home time came, well for 4 weeks it did. Shannon was then admitted again with aggressive rejection. It seems like this is when all our other troubles began!
Shannon's rejection was treated with a 5 week admission in hospital been pumped once again with medication after medication, Once again we got discharged and started trying to get our home life back on track. Within a couple of weeks Shannon started losing weight, couldn't eat, and had continuous stomach pains she wasn't tolerating her NG feed and the weight was just dropping off of her. After another admission and another course of IV Antibiotics we were sent home with a diagnosis of CMV virus, and type 1 diabetes but Shannon seemed in high spirits and was tolerating her NG feed so we were happy to take her home.
Within a couple of days of Shannon been home her stomach pains had started again, she was becoming more sleepy and she wasn't tolerating her feed again. Not again, what could possible be wrong this time???
Shannon was once again admitted into BCH in January of this year, but this time we had the devastating news she was suffering with PTLD ( Post-Transplant lymphoproliferative disorder) this was the reason she was losing weight, this was the reason she was having stomach pains as all her colon was full of ulcers and irritation her poor stomach couldn't / wouldn't tolerate or absorb the nutrition she needed. After everything my daughter had been through (Like it wasn't enough) Life would like to throw Cancer at her. Unfortunately the Cytotoxic T Cells treatment the doctors want her to start isn't available on the NHS, and funding hasn't be authorised, hence me pleading with everyone to help us on our journey to fund the treatment for Shannon.
No one should have to go through any of this, never mind an innocent young child. Shannon has had battle after battle since November 2018, I don't know what else this cruel world is going to throw at her but please, please, please help her fight to get over this. She's proven to be a little fighter an she isn't going to let this get the better of her. Help my daughter beat this.
Every donation will be appreciated, however big or small it will all help towards the end target.