“You Have To Go Through a Storm To get To a Rainbow”, Dainere Anthoney, Murdoch Books Pty Ltd, Australia, 2010. ISBN 9781742660448 (pbk.) Go to the website: http:///www.dainere.com for information about purchasing the book in Australia. Email the Anthoney family at santhone@bigpond.net.au about purchase arrangements for overseas orders. Dainere’s blog is at: www.dainere.blogspot.com
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Left
- Cover of book. Right
- Dainere, with IBTA Chair Denis Strangman (the one in the
coat) and Theodore (who features in the book).
The publication of Dainere Anthoney’s book about her journey with a brain tumour arose from a special wish granted to her by the Starlight Children’s Foundation in Sydney, Australia. It is based on her web blog www.dainere.blogspot.com which she commenced when diagnosed at eleven years of age with a medulloblastoma brain tumour - a tumour type which accounts for about 20% of brain tumours in the 0-14 age group.
Although living in Canberra, the national capital of Australia, her treatment has mostly taken place at Sydney Children’s Hospital which has involved frequent travel and lengthy hospital visits 300 kms away from home.
Now twelve years of age the book and her web blog display a maturity in Daniere beyond her years.
All paediatric oncologists, nurses and hospital staff, should be encouraged to read this book as part of their training, because the young author conveys a number of insights about patient experiences from which they could benefit.
For example, she suggests that patients first ask nurses what type of dressing they are comfortable with in applying, when given the task of changing a patient’s wound dressing. In that way they can inflict minimal discomfort. She also has views about the different types of finger prick machines for taking blood samples.
On one occasion a male nurse (who she derisively describes as a “boy nurse”) is given the task of changing her nappy – surely not the best arrangement. On another occasion, when suffering from severe diarrhoea she is eventually moved to a separate room away from a ward full of boy cancer patients.
But these are relatively minor irritations because she frequently gives praise to the many staff who have helped her along the way.
When originally diagnosed her father recoiled against the anticipated treatment she would receive, which is no doubt a common reaction. Her mother has become her staunchest supporter and is there for her every step she takes. She is very affectionate towards her older sister Nalani and brother Jarrett.
The specialists suggest she has experienced just about every adverse treatment reaction that can occur. Dainere is being treated under what is known as the St Jude MB03 protocol. “St Jude” refers to St Jude Children’s Research Hospital in Memphis, Tennessee, USA, and “MB” refers to medulloblastoma. It is a protocol being followed as a clinical trial in the USA, Canada and Australia.
The protocol includes: “High-dose
chemotherapy and autologous stem cell transplantation (SCT): Six weeks
after
the completion of radiotherapy, patients receive high-dose chemotherapy
comprising vincristine IV followed by cisplatin IV over 6 hours on day
-4 and
cyclophosphamide IVHigh-dose chemotherapy and autologous stem cell
transplantation (SCT):” (US National
Cancer Institute description).
Dainere also had 55.8 Gy radiotherapy to the
primary site and
then 36 Gy craniospinal axis. Her chemo doses were: 300mg/m2
of
Cisplatin, 15gm/m2 (25% dose reduction in cycle 4) of Cyclophosphamide
and
8mg/m2 of Vincristine. Her tumour was rated as a Grade IV
Metastatic
Medulloblastoma.
I recently took Dainere’s
book
with me while manning IBTA displays at a conference of the American
Society of
Clinical Oncology (ASCO) in Chicago and the International Symposium on
Paediatric Neuro-Oncology (ISPNO) in Vienna. I showed Dainere’s book to
various
neuro oncologists and mentioned the protocol. Many were amazed at her
book and
allowed me to take photos of them looking at it which were sent back to
Dainere.
Several of the doctors indicated that her treatment protocol could be
very
demanding.
One “advantage” that
paediatric
brain tumour patients have over adult patients is that virtually all
are
entered in a trial of some kind and with this comes a more diligent
observation
of any neuro cognitive deficits and the patient’s overall physical and
mental
status. Dainere has apparently incurred some significant side effects
due to
the protocol, particularly with the hearing in her right ear and
deteriorating
strength in her legs and knees and associated pain. This prompted her
to wonder
at the “cure being worse than the disease”.
Another subject that emerges
early in the book and which is referred to occasionally is her
puzzlement at to
why God has allowed this suffering to happen and how she should handle
it.
Initially she is angry with God. Her mother tells her that only special
people
are chosen to bear such suffering. Later, she wonders if her suffering
is part
of God’s plan to help others which she can seek to undertake by
attempts to
raise awareness and raising funds for support and research.
These are not easy questions
to
answer. While on my way to attending the ISPNO conference I met a young
married
European woman in her ‘twenties who had wondered why she in particular
had been
given so much misery in her life – her mother had died from breast
cancer and
now her newly married husband had been diagnosed with a malignant
primary brain
tumour.
Brain tumour patients and their loved ones can suffer mental anguish, together with physical pain because, like all cancer patients they can wonder why they have been singled out, particularly those who are young. Here is a quote from a Jewish Rabbi in partial answer to this question: "God never promised life would be fair. The promise was that when you inevitably have to confront the unfairness of life, He will be with you".
Other feelings which those working in the area need to be aware of is the yearning for normalcy, sadness at missing her friends, the importance of hopes and wishes, and the need to maintain her education. There are also many questions relating to treatment which Dainere accumulates at key stages of her journey, which she saves for a nurse friend on the Ward “Catherine” to answer.
In both the paediatric and adult brain tumour environments there is a growing need for people like “Catherine” to act as a “contact point” between the patient, their family, and the treatment team to answer non-life threatening questions. In one of the most advanced social welfare countries, Sweden, there is a dedicated paediatric brain tumour contact person in each of the six main cancer treatment centres in the country. They are financed by the Swedish Childhood Cancer Foundation. I understand there may be some similar nurses in centres in the USA and Denmark.
When diagnosed with cancer many patients want to know their prognosis and obviously this question has entered Dainere’s mind. Her response is summed up in this comment early in the book: “Each day when I wake up I know that I need to try to make the most of it because I don’t know how long I will be here, hopefully it is a long time but if it isn’t I want to feel like I have made a difference”.
Later, she meets a boy at her school who says that his sister also had a brain tumour, received treatment like Dainere has, but later died. This prompts her to appreciate her life even more. Twelve years of age is very young to be facing your own mortality but the young writer does it with grace and forthrightness.
When discussing Dainere’s book overseas with a leading paediatric neuro-oncologist who is both a practitioner and is involved with ground-breaking research we swapped ideas about what role the book might play. The Doctor was of the firm belief that despite the detailed and sometimes distressing chronicle of her experiences as a patient receiving a heavy-duty treatment regimen – involving pain and suffering – many patients, even young ones, do wish to know what is up ahead for them and she believed it suitable and useful for children of that age.
As Dainere states, this book is only the beginning but it is a remarkable beginning and, hopefully, will have the effect she intends of prompting greater awareness and making a difference.
D.S.