Treating sick children abroad
Sir, – Further to “Hopes for sick children who go abroad may be ‘unrealistic’” (Health, August 20th, 2014), as a parent who has battled neuroblastoma in the US for my daughter over the past 14 years, I found the article’s premise and conclusions misleading. I feel it’s vital that Irish parents afflicted by neuroblastoma know there is another potentially life-saving side of this story not being told here.
I am no champion for the US healthcare system. I take issue with its shortcomings; particularly the role money plays in advancing research and new clinical trials. However, my own journey completely contradicts the advice this article offers.
The quoted statement that “[neuroblastoma] relapse is invariably fatal . . . in the region of 4 per cent, possibly 8 per cent, but that is optimistic” is incorrect. According to the US National Cancer Institute, the overall survival in the entire relapse population for neuroblastoma was 20 per cent, not to mention my own daughter’s experience, married last year at the age of 26.
Regarding the quoted statement “I will not, as an individual, send any of my parents into that zone where it is purely experimental and is not within a clinical trial”, the most effective treatments my daughter received were outside the clinical trial zone, suggested by doctors working directly with her and in collaboration with colleagues.
The statement “I think it [fundraising] is exploiting the community goodwill” is simply wrong. Fundraising has been a very important part of the journey we undertook, only as a last resort.
The statement: “They are separated from their husband or wife, separated from grandparents . . . think of that position” is naive from this parent’s perspective. The worst thing a parent can feel is that they or the doctors they have working on their behalf didn’t do everything possible for them. I have never been naive about expectations but I also know I’ve done everything I could think of for my child including working with multiple doctors and centres simultaneously. It’s not easy, but it’s the right thing to do for someone like me. Suggesting otherwise is offensive.
The statement “it is part of a trend where parents believe they can be more in control of life and therefore they will fight everything” is patronising. The explosion of information combined with ever-advancing sophistication of research in treatment options necessitates more proactive roles by parents. This “trend” is happening for a reason, not because there’s something wrong with parents (or patients). My experience has taught me that aggressive, proactive engagement in cutting-edge clinical trials has the potential to help a child with recurrent neuroblastoma.
I have faced similar attitudes by regional doctors here in the US – “don’t travel across the US”, they’d say, “we have capable doctors right here”. I didn’t accept that advice then and I never will. Thankfully, my daughter is in her second year of marriage to her high school sweetheart after graduating from college. I don’t take anything for granted.
My book Steps to Hope is, in my opinion, the missing side of the story presented in your article.
The article seems to blame “the problem” being cited as due to “social media”. I honestly don’t know how anyone could suggest that we need less communication for a parent whose child has been given a neuroblastoma diagnosis.
I hope you will take this letter in the spirit with which it is intended – to help create a proper dialogue about horrific disease and what can be done to empower individuals to do what they can to pursue the best possible treatment available for their child. – Yours, etc,
San Luis Obispo, California.