The Circle of Life

 

               It is our hope that this note finds you well.  We wanted to update you all on some of the exciting progress that continues to be made in our mission to eradicate pediatric cancer through prayer and research.  Our founder has been very busy working through researchers, clinicians, and others and while we still have a long way to go, progress is measured one child at a time.  One of the most important aspects of what we do to honor Catie’s Wish is heighten awareness of pediatric cancer in general and St. Jude in particular.  To that end, Christine and I were honored to be a part of the first Pediatric Palliative Oncology Symposium held this summer at St. Jude Children’s Research Hospital for more than 350 of the top doctors, nurses, and care teams from pediatric hospitals across the country.  As a leader in family centered care and integrated quality of life and palliative care, St. Jude was in a position to begin spreading this holistic treatment plan to others.  Embedded in this approach to treatment for these kids and their families is a recognition that despite the advances of the past 50 years, 20% of these children that receive a cancer diagnosis will die from their disease.  As a result, having bereaved parents like ourselves on the care teams to assist not only the families as their children approach and go beyond the end of their life, but also to support the staff on how best to care for those families and care for themselves as well.  Christine and I have been blessed to be a part of this effort at St. Jude and now will be part of the effort to duplicate the model at other hospitals across the U.S. 

               Part of what we do for these families is called Day of Remembrance.  It is St. Jude’s way of acknowledging and honoring the children that still succumb to their cancer as well as a chance for families to recognize that they are still St. Jude families even after the death of their child.  We attended as a family in 2010 and 2011, and Christine and I have been back as part of the parent panel twice since then.  Last year, M.E. who was only 2 when Catie was a patient expressed that she remembers very little about St. Jude and that her memories were from stories rather than her own experiences.  Christine listened to our now 11 year old and with a mother’s brilliance suggested this year’s Day of Remembrance as a perfect opportunity for M.E. to create some new memories and assist siblings whose loss was more recent.  So the five of us, Christine and myself, M.E., Molly, now 13, and Mia, now 15 went to St. Jude last week along with 140 other families whose children had passed away as St. Jude patients.  Our 3 girls spent some of the time reliving Catie’s journey and some of it ministering to other kids their age.  In addition, they spent some time in a studio being filmed talking about Catie and about what it is like to be a sibling of a kid who has cancer and to be a surviving sibling of a brother or sister who has died.  The footage will be used to help siblings and parents of siblings navigate their own bereavement and grief journey.  Christine and I were amazed at the answers that each of the 3 girls expressed during the interviews and at the depth of their introspection.  I’m sure that their big sister Catie was proud of them as well.  Earlier that day Christine and I were honored to be on a parent panel for 400 members of the clinical staff and the administration at the hospital talking about the decision and choice to continue to support and volunteer for St. Jude after the death of our child.  All in all, the time we spent in Memphis reminded us that listening to our kids and their wishes and desires is just as important now as it was when we learned that lesson 9 years ago with Catie.    

                        Other updates from team O’Brien.  Maggie is in her second year at DeSales and her passion for nursing is matched by her success thus far in the curriculum.  She was quoted recently in an article for the Philadelphia Inquirer about her decision to be a nurse.  The link for the article is http://www.philly.com/philly/health/kids-families/after-losing-their-daughter-to-cancer-pa-family-teaches-st-jude-staff-how-to-communicate-with-bereaved-parents-20171020.html .  Max is in his first year at the University of Pittsburgh studying Chemical Engineering and doing so as a Marine Option ROTC candidate.  Other than the sore arms from the 5,000 pushups he has done since arriving in Pittsburgh, he is doing very well.  Mia is in her Sophomore year at Trinity and is already taking AP courses and a demanding course load and seems to be handling it all very well.  She rises at 5am each day and swims 50 laps in the pool before school to get the blood flowing. She is swimming for Trinity and playing CYO basketball for our parish team. Molly is in 8^th grade and in addition to being a very good student and a blossoming basketball player (the 7 inch growth spurt in the last year has helped), she is preparing for Confirmation this March.  M.E. , whose suggestion for going back to St. Jude provided us all with some great memories is in 6^th grade and doing very well.  She is also playing basketball for her school team.  As we write all of this, we realize anew how very blessed we are with the 7 children that God has blessed us with and what joy has come to our lives because of them. 

                   As for Christine and myself, things are really good although we have spent the last few months working on different “projects”.  In addition to our normal careers and responsibilities and our work with St. Jude and Catie’s Wish.  Christine has taken on the task of vetting more than 200 on-line and print resources for grief, bereavement, and end of life care.  She has even become bi-lingual on words like “loss”, “death”, and “pain” as many of the resources are needed for Spanish speaking families as well.  The database she has created will be available to any St. Jude family that has had a child who has died or are approaching end of life.  Eventually, as we share the knowledge and the recipe that we have created at St. Jude with other institutions, this database will also be opened to them.  All of the work Christine has done reading these books and approving them for distribution became very real last week as a family was referred to her by the hospital and through a quick sort on the database, she found the two most appropriate publications for that family and we were able to get them the assistance they needed.  Meanwhile, I have tried to make use of all that Christine has learned as I did my best to care for my father as he spent what turned out to be his last five months here in Pennsylvania.  For those that have followed Catie’s journey, you may remember that when we learned that Catie’s tumor had returned she called my father, her Poppy and said, “Poppy, is it ok if I come to visit you to celebrate your 80^th birthday because I may not make it to my 8^th.”  We did celebrate his 80^th in 2008, with Catie, and now, just short of his 89^th, he is in heaven with Catie, his two wives of 30+ years, 9 of his children, and 2 other granddaughters.  What a homecoming it must have been!       

 

So that’s it from all of us.  We continue to be humbled by all that has happened through Catie’s journey, not only when she was here with us but also in the time since God called her home.  We are humbled most of all by all of you who have journeyed with us and have supported who we are and what we do.  We ask God’s blessings on each of you and as always we are,

 Christine, Kevin, Maggie, Max, Mia, Molly, M.E., and always Catie

 

Posted by Kevin O'Brien Monday, October 23rd, 2017 @ 12:28 pm

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