Solving Kids' Cancer

The NCCA UK Joshua Deller Appeal

Fundraising for The 2Simple Trust - Joshua Deller Appeal
£361,011
raised
by 821 supporters
Donations cannot currently be made to this page
The 2Simple Trust's fundraising, 20 August 2009

Story

Welcome to Joshua's new Justgiving page. We have raised £18,725 (+£4,223.39 in GiftAid) online so far for Joshua - to read all previous messages from people supporting/donated to Joshua’s appeal, please go to: www.justgiving.com/joshua-appeal2.

We'd like to thank you all so very much for you continuous support!

 

Joshua's Story

www.childrenscancer.org.uk/our-appeals/joshua.php

When Joshua was born on 29th May 2008, we held him in our arms and our world was complete. He was the most beautiful baby we had ever seen, our first child, with the bluest eyes and a smile to make your heart turn over.

At Christmas, when Joshua wasn’t even seven months old, it was discovered that Joshua had a tumour. It was neuroblastoma – a rare and often fatal childhood cancer. Further tests showed that it had spread around his little body and Joshua’s doctors told us it was stage 4, high risk – the very worst case scenario.

With Joshua’s prognosis described as unfavourable, he began treatment at Great Ormond Street Hospital in January 2009. Joshua endured 70 days of induction chemotherapy which had a dramatic effect on the cancer – removing all eleven areas of bone disease and shrinking the primary tumour by 5cm. Joshua then had surgery to remove the tumour in his adrenal gland where the doctors examined his liver and intestines but found no further evidence of the neuroblastoma.

Before Joshua could continue with treatment and receive the high dose chemotherapy so essential in preventing relapse, doctors needed to harvest a minimum of 3 million stem cells. These cells would be used to repopulate the bone marrow so Joshua’s body could produce healthy blood products. After two unsuccessful attempts, and with time running out to begin the high dose chemotherapy, stem cells were collected directly from Joshua’s bone marrow under general anaesthetic. Joshua began the next phase of treatment in June 2009 with three weeks of radiotherapy at University College Hospital. The list of procedures Joshua endured is too long, but throughout all this our brave little boy managed to smile, play, and even laugh.

Before Joshua could continue with treatment and receive the high dose chemotherapy so essential in preventing relapse, doctors needed to harvest a minimum of 3 million stem cells. These cells would be used to repopulate the bone marrow so Joshua’s body could produce healthy blood products. After two unsuccessful attempts, and with time running out to begin the high dose chemotherapy, stem cells were collected directly from Joshua’s bone marrow under general anaesthetic. Joshua began the next phase of treatment in June 2009 with three weeks of radiotherapy at University College Hospital.

Despite the best efforts of Great Ormond Street Hospital, the likelihood of Joshua suffering a relapse was still as high as 80%. With no cure for relapsed neuroblastoma in the UK, the best chance of beating Joshua’s neuroblastoma was an antibody treatment available in America at a cost of over than USD$500,000. This antibody treatment is most effective when given alongside maintenance therapy.

Thanks to the amazing support of their local community who donated and raised over £200,000 to help Joshua, the family flew to New York’s Memorial Sloan-Kettering Cancer Center in October 2009. Joshua began the monoclonal 3F8 antibody therapy after being given GM-CSF to stimulate the production of white blood cells.

For the best possible chance of beating neuroblastoma, Joshua would need at least 6-8 cycles of the antibody treatment. However, after only two rounds of the antibody treatment Joshua developed a reaction to the antibody called the HAMA response which decreases the effectiveness of the treatment. At this time, the immunotherapy was put on hold until Joshua stopped reacting.

In November of 2009, Joshua started six months of oral chemotherapy which is to mop up any microscopic cells left in his body. Joshua is continuing with treatment, has put on weight, and took his first steps in January 2010.  

 At the beginning of 2011, Joshua started having immunotherapy treatment in Greifswald, Germany. Now this is complete, Amy and Steve are back at home with Joshua.

Joshua will be tested for neuroblastoma regularly. Joshua, and other  children like him, may need your help in the future. To keep up to date with Joshua's progress and to find out more about our work, please see our website.

 The work of the 2Simple Trust will be moving over to the Neuroblastoma Children's Cancer Alliance UK. The new charity is focussed exclusively on helping children with neuroblastoma and will drive the 2Simple Trust’s mission to improve the outcome for all children with neuroblastoma.  We are an alliance of parents and communities who want to beat childhood cancer.

All donations are paid into NCCA UK’s general funds to further its general charitable purposes.  The funds raised by this Journey are not restricted for Josuha’s use.  However, the trustees of NCCA UK have agreed to designate funds raised by this Journey to help Joshua and his family pay for potential future treatment costs and all other associated costs including travel and accommodation.  If Joshua no longer needs the funds, or if the trustees decide, at their absolute discretion, that the funds should be used for a different purpose, they may redesignate all or part of the funds for NCCA UK’s general charitable purposes.  We are very grateful for your charitable donation.  For further information about NCCA UK and how we spend donations, please see our FAQs http://www.ncca-uk.org/faqs

 

 

About the charity

The 2Simple Trust helps families of children suffering from neuroblastoma. Help is given by the provision of financial assistance for treatment and other needs as well as the funding of research into the disease. This work will shortly be transferred to a new charity set up specifically for the purpose and called The Neuroblastoma Children’s Cancer Alliance.

Donation summary

Total raised
£361,010.45
+ £17,452.31 Gift Aid
Online donations
£76,417.10
Offline donations
£284,593.35

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