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Thursday, June 21, 2012

Oscar's 2 year anniversary

Today is the two year anniversary of Oscar's diagnosis. In the spirit of looking forward and sharing important knowledge gained along this journey I thought I would share with you my notes from HOPE (Hospital Oncology Parents Education) Day. They are just in dot form and I have not had time to elaborate on them but they give you an idea of what the day was about, highlight recent research and share some tips on surviving along the way. I hope they give you an idea, make you feel less alone or just encourage you in some way. We were very lucky to have Dr Scott Howard share his expertise and thank everyone involved in making it happen. So, here it is:

HOPE – Hospital Oncology Parents Education Day – notes

“State of the art treatment for leukaemia and the prevention & treatment of side-effects of therapy” address by Dr Scott Howard, MD, MS – St Jude Children’s Research Hospital

-       Explained the importance of attending these events and sharing stories because knowledge is power’

-          In his job as a children’s paediatric oncologist he tackles and subdues the most catastrophic illness children can face

-          Talked about Post Traumatic Stress resulting from expectations not being met. As parents, we had expectations that did not include the trauma and loss that cancer treatment entails for our children.

-          Also, when you finish treatment your expectations are not met because it is not over – the journey for a child with cancer and their parents is for life.

-          Highlighted recent research suggesting Post Traumatic Growth should be a goal to become stronger and to learn to live with uncertainty. This shifts the stress of not meeting your expectations towards a position of personal growth through acceptance of uncertainty and inner strength.

-          Mentioned a website that is a collaboration from parents and a tool for furthering parent education through shared stories and parent groups

Scott also gave us a list of ideas on how we can help out?

-          Support each other

-          Fundraising

-          Help with special projects

-          Reach out beyond borders to third world countries that have a much lower survival rate due to lack of medical facilities for children with cancer (third world countries survival rate for childhood cancer is 20% whilst in first world countries it is 80% for the more common cancers such as leukemia)

-          Support each other (definitely can’t say that enough)

His address was completed with this wonderful quote:

“Cancer is not contagious, love is.”

Questions/Discussion following Dr Scott’s presentation:

Q} What is being done to prevent cancer in children?

Answer: There is nothing you can do toward prevention. There is about a 2% genetic component. Parents want to know why their child got cancer but it is simply just a random lottery of bad luck.

“There is almost nothing you can do to give your child cancer or prevent your child from getting it”

Question: What about the last 20%

Answer: The breakthrough will be in treatment and improvement in medications. Individual mutations need their own research so it is extremely time consuming. The next breakthrough will be in getting faster research results.

Dr Scott Howard concluded with an open discussion about different ways parents found to cope. He suggested three steps that assist in recovery and encourage post traumatic growth:

1.                   Be honest – it is terrible/horrible etc

2.                   Share your stories with each other.

3.                   Be there for each other.

Thanks for checking in on us. Oscar's bone marrow aspiration and lumbar puncture are scheduled for next Thursday 28th June. I'll let you know how we go. Take care and much love, Cindy x