A Chance For Alice – TheLiberal.ie – Our News, Your Views

A Chance For Alice




A chance for baby Alice Turner –

Aggressive Neuroblastoma Cancer Patient

from Drogheda, Co. Louth 

Voices-for-Alice-Album-cover

Contact Campaign Chair Cormac Bohan on 087-7909975

or the “A Chance for Alice” line 086 4445353

achanceforalice@gmail.com

At just 15 months old In December 2013, baby Alice Turner from Drogheda was admitted to Our Lady of Lourdes Hospital for some tests after a routine check-up raised some concerns. An ultrasound showed she had a tumour on her kidney. Alice’s parents, Lyndsey and Paul Turner, went from having a perfectly healthy and active child to being faced with a potential diagnosis of cancer. As Alice’s Mum Lyndsey put it, “Nothing can prepare you for this and no words can describe how you feel, but denial and shock are probably the closest”.

Alice was quickly transferred to Our Lady’s Hospital for Sick Children in Crumlin and a CT scan confirmed that there was a tumour the size of a grapefruit on Alice’s left adrenal gland above her kidney. She had surgery two days later to remove the tumour. While the surgeon was confident that he had removed the entire tumour, Alice’s parents would need to wait an anxious few days for the results of a biopsy to be returned. On the 30th of December Lyndsey and Paul received the awful news that Alice had been diagnosed with High Risk Neuroblastoma .

Alice started 18 months of intensive treatment in early January 2014. The treatment includes 8 rounds of rapid induction chemotherapy every ten days, followed by high dose chemotherapy and a stem cell transplant, radiotherapy, differentiation treatment and immunotherapy. This treatment will likely make Alice very ill and comes with potential serious long term side effects. Although the cancer had not spread past the tumour site the tumour cells show a genetic abnormality called N-MYC Amplification which means her disease is very aggressive and very likely to spread and be terminal if left untreated and the chance of relapse is high.

Neuroblastoma is a rare cancer that affects the sympathetic nervous system. Children diagnosed with Neuroblastoma are usually younger than 5 years old and only about 10 cases are diagnosed in Ireland every year. High-risk Neuroblastoma is even harder to cure and is more likely to become resistant to standard therapies or to come back after seemingly initial successful treatment.

Lyndsey and Paul have already been in touch with Oncologist Giselle Sholler, MD  MSc. in Helen de Vos Children’s Hospital in Grand Rapids Michigan, who is chair of the  NMTRC group, who in collaboration with 18 universities and children’s hospitals  across America, run clinical trials to treat Neuroblastoma and this is the particular  trial they hope to enrol Alice on once she is finished her 18 months of treatment in Our  Lady’s in Crumlin.

The trial which is running since June 2012 and uses a drug called DFMO, has been  100% successful in preventing relapse in the participants who are all in remission  from High Risk Neuroblastoma. Statistically up to 70% of the 34 participants could  have relapsed and relapse is more common in the first 12 months since finishing  treatment. This is very promising and by the time Alice is ready to go there will be  twice as many participants who have completed the trial so the results profile will be  even clearer.

Alice’s families and friends have launched the “A Chance for Alice Campaign” to raise funds for the initial two year treatment programme. Headed by Paul’s Dad, Dave Turner, a well know charity activist in Drogheda, and Lyndsey’s brother Cormac Bohan, the campaign has already captured the public imagination and is off to an encouraging start but needs all the support it can get. The public responded en masse to the hugely successful campaign for funding and awareness undertaken for Lily Mae Morrison from Galway last year who has now started on the U.S. programme and whose campaign featured the single “Tiny Dancer – A Song for Lily Mae”. Now Alice Turner and the other families affected by the condition are attempting to emulate that success so that they can access treatment in U.S. and have set up similar fundraising campaigns.

The Turner and Bohan families have already had the issue of the lack of public funding for such trials on behalf of all of the children hoping to access them raised in Dail Eireann by their local TD Gerald Nash (see link below), the first time the issue has been raised on behalf of all of the children as a group by a member of the Oireachtas. But until such time as the issue gains political traction they must operate on the assumption that extensive fundraising from the public will be necessary.

In addition to Alice Turner from Drogheda and Lily Mae Morrison from Galway, the other children currently fundraising to access this and related Neurobalstoma programmes are Clodagh Daly, Portlaoise; Robyn Smyth, Whitehall, Dublin; Merryn Lacy, Donabate, Co. Dublin; Donal Parsons, Strandhill, Co. Sligo and Molly MacNally, Balbriggan, Co. Dublin whose campaign launch is imminent. Chairman of the “A Chance for Alice” campaign, Cormac Bohan, is making contact with the families to determine the appetite for an umbrella group for children with Neuroblastoma which could lobby on the children’s behalf and potentially attract corporate funding which could subsidise travel and subsistence expenses during treatment in the U.S. and so alleviate potential hardship for the families.

According to Alice’s Mum and Dad, “Alice is a very social and active toddler and loves life. She loves going to the playground, looking after her dolly and playing peekaboo. She loves the characters Peppa Pig, Doc McStuffins, Mickey Mouse and absolutely anything to do with horses. She is horsey mad! Just like every little girl her age Alice just wants to play, laugh and have fun as she discovers the world around her. She deserves a chance”.

If you would like to help the “A Chance for Alice” campaign you can make a donation on www.idonate.ie/achanceforalice. Bank payments to “A Chance for Alice”, AIB, Drogheda; IBAN: IE07AIBK93209465235070 Bank Identifier (BIC): AIBKIE2DXXX.

You can also follow Alice’s journey by liking and sharing Alice’s hugely popular Facebook page, www.facebook.com/achanceforalice and Lyndsey’s blog http://achanceforalice.wordpress.com

 [youtube url=”https://www.youtube.com/watch?v=tkWf-0pWYJM” width=”560″ height=”315″]

 

Related links

http://oireachtasdebates.oireachtas.ie/debates%20authoring/debateswebpack.nsf/takes/dail2014030600048?opendocument#VV00400

https://nmtrc.org/about/

http://clinicaltrials.gov/sho http://www.icr.ac.uk/press/recent_featured_articles/childhood_cancer_barriers/index.shtmlw/NCT01586260

http://clinicaltrials.gov/show/NCT01586260

 

Contact Campaign Chair Cormac Bohan on 087-7909975

or the “A Chance for Alice” line 086 4445353

achanceforalice@gmail.com

Share this story with a friend

Share this story

Tell us what you think on our Facebook page