Re-blogging  from the Courageous Parents Network.

http://courageousparentsnetwork.org/post-4-this-is-not-a-choice-we-need-to-fund-medical-research-and-palliative-care/

By Blyth and Kerri

 We are both moms who have parented and loved children who have died from pediatric illness. One child died from a brain tumor that did not respond to multiple therapies and one child died from a genetic illness for which there was no treatment or cure.

 Two entirely different diagnoses and two entirely different treatment plans and trajectories.

 Both of us care deeply about research, of course, so that the children that follow ours can live and thrive and so that their parents can be spared such grief.

But just as equally, we care about palliative care. Here, we each explain:

From Kerri:

Research, statistics, scans, and labs relentlessly occupied a large amount of my brain while my son was fighting for his.  I relied heavily on the data presented in the most recent and innovative clinical trials.  He was seen at one of the leading cancer institutes where he was treated by one of the most influential pediatric brain tumor researchers in the world. I collected journal articles and learned to decipher radiology scans. We rallied and relayed and walked and ran all through his life, hoping our efforts –this research, would catch up while we still had a chance.

We live in a time where cure for many is within our grasp.  Scientific advances made within my son’s two short years of life are now changing protocols, and will hopefully one day lead to saving more lives. It is an exciting and hopeful time in medicine and it goes without saying that research is the path to discovering less toxic, more affective treatments. But improving the experience of families who are currently in the NOW is pressing and it is something that does not take decades of research.

Despite continued medical advances, treatment for pediatric cancer is far from precise.  Research, statistics and scan results can be complicated and sometimes misleading, leaving families under-prepared and increasing their risk of fear and regret concerning treatment choices and outcomes.  At diagnosis, my son was slated to be a long-term survivor.  He was lucky to have had a low-grade, non-malignant tumor that children often live with for 20 years or more.  These were our statistics.  This is what the research has shown.  This was our hope.

Our reality, however, was that his tumor was large, he was diagnosed at a very young age and his quality of life was diminishing before my eyes.  I did not allow myself to be seduced by the promising statistics that filled my son’s prognosis because I knew he was only one person.  It did not matter to me that 80% of children with his type of tumor survive.  If I considered the 80% who survive long-term, I had to give equal consideration to the 20% who do not.

Research is amazing, necessary, and quantifiable.  But we also need to recognize, name and support the immeasurable that is also so necessary—the home visits, loving phone calls, peer-support groups, and the every present goal of quality of life.  In the midst of the numerous treatment protocols, scans and studies—all focused on his survival—it was the peripheral support teams, early intervention, peer-groups and palliative care professionals that proved to be the sounding board to whom I was able to surrender my fears and who helped me fulfill my goals for my son’s life.  Having a team that embraced my attention to quality of life allowed me to accept the research in it’s entirety, instilling confidence in the decisions I made each step of the way, no matter the outcome.

After my son’s death I have developed an even greater appreciation for the influence these support services had on my ability to cope. Having a strong understanding of all of our options during treatment made for clearer decision making when we found ourselves shifting focus to end of life care.

Palliative care is a vital part of every treatment protocol, no matter the projected outcome.  Even with a positive prognosis, most often parents are considering the potential of their child’s death and suffering right from diagnosis.  While promising statistics and an optimistic outlook from the medical team can go a long way to fostering a manageable experience for families, I believe that it is through the palliative care model that families are able to take an educated and empowered role in their child’s care, enhancing whole family wellness by minimizing regret and suffering throughout treatment, and for some, through to the end of life and beyond.

From Blyth:

My daughter Cameron and my nephew Hayden were diagnosed with infantile Tay-Sachs disease and both died at the age of two. During their lives, there was no treatment or cure for Tay-Sachs. Sadly, 13 years later, this is still the case. However, thanks to ongoing fundraising efforts of families like ours and tireless research efforts of scientists in academia, exciting breakthroughs have been made in the years since their deaths and hope is definitely on the horizon. Our family and friends alone have raised and given away more than half a million dollars to fund research for a treatment and we will continue to do so until a treatment is found.

But here is what we ALSO fund every year: pediatric palliative care—both programming and research—to provide better care for affected families. In the best-case scenario, given all that needs to happen to bring a treatment to these children—finding a promising treatment in non-human animal models, going to clinical trials in humans, receiving FDA approval, manufacturing etc etc—a treatment is at least several years away and possibly more. During this time, too many children will be newly diagnosed and families will be freshly devastated. Parents will suffer the anguish of hearing the diagnosis, of accepting the prognosis, of making difficult care choices for their child, of caring for the rest of their family, of providing a quality of life for their affected child, and then of watching their child die and healing the deep sadness that follows. Forthese families’ Here-and-Now, the support of an interdisciplinary team of pediatric palliative care providers—doctors, nurses, social workers, child-life specialists, chaplains, psychologists, arts therapists—is their greatest hope for the best care for their child and the well-being of their family.

***Also glitches have been fixed on the CPN website and ALL parent videos (including mine!) are now fully available for viewing @ http://courageousparentsnetwork.org/videos-by-theme/ 

click on a ‘theme’ in the tree

                                                 ex: DECISION MAKING AND PALLIATIVE CARE

 each question to the left is a DIFFERENT video

ex: 1.Decisions start from Day One

      2. Preserving his quality of life 

                      3. We weren’t going back to the hospital.