News & Events

Happy 17th Birthday Catie!

Sweet Catie,

How anticipated was your arrival! How overjoyed we all were to hold you and kiss you. How delighted to have you join our little family. From your first yawn, first stretch, first deep breath you became our hope and filled the hole left by your sister Gianna. Today, seventeen years later you are still our hope. As the calendar page turned to April, we saw the 23rd colored in purple just like you asked. April 23rd is even purple on all of our devices and that took some doing. We ask all of those that support us to color their calendars purple too!

Even though it has been nine years since your last breath, since we last held you and counted your freckles, you continue to inspire us to be more than we would have ever been without you. Looking back on the days when you were sick, the clearest memories are of your selfless concern for others. Looking back through the photos of you at St. Jude and back home in your last days, what is most noticeable is your smile. Thinking back to those days, the most poignant memories are of how you handled your dying with such acceptance and grace. How did you know what to do? You simply prayed and asked us all to join you.

Today, nine years later, the foundation that bears your vision continues to pray. The children from St. Columbkill Parish, where you attended Pre-School, are again praying for the kids at St. Jude as they color cards to let them know “they are being thought of in a special way on April 23rd.” This year’s happy packages are given to us from Crazy Aaron’s who is supplying his “Thinking Putty” in purple. For the past eight years Candee has arranged a happy package for every St. Jude patient on your birthday. You inspire others beyond our family! You inspire Mr. Jim to continue his light show for the seventh year. You inspire Becky to continue to organize a dance-a-thon at St. Joseph’s. You inspire Liza and her work out event for Catie’s Wish and St. Jude. In this her 9th year of supporting us, she arranged for CBS21 to interview us in a special Making a Difference segment of the news. You would be so proud as both Mia and M.E. were interviewed and Molly was in the video as well blocking Mia’s shot as they played basketball together on camera.

http://local21news.com/news/making-a-difference/honoring-caties-wish

Your sisters have missed you more than ever this year, and have been very vocal about it. Perhaps your absence is more evident to them with both Maggie and Max away at college. M.E. asked us to go back to St. Jude for Remembrance Weekend. We had attended in 2010 and 2011 as a family, but the girls were so young that they wanted to go again. And so, we went back and did most of your favorite things; Mud Island, the Peabody for brunch, and Huey’s. While we were there the girls even did a video spot for St. Jude.

It is hard sometimes to imagine that they are growing up without you, though you still remain present to them with all of the ladybugs we all see. Mia continues to do so well in high school. She is studying hard, binge watches shows on Netflix, and continues playing basketball, swimming and running track. She will be learning to drive this summer! Molly just received her Confirmation. She placed second in the Science Fair and has been asked to compete in the National History Bee. She continues to play basketball and run track. M.E. misses you the most and yearns to know you. While she can see the photos and videos of you loving and holding her as a 2 year old, she wants to actually remember you. Being down at St. Jude was good for her, but she has memory blanks that may never be filled in until she is with you again. In the meantime we will love and support her. She has adjusted to Middle School. She is a good student and enjoys playing basketball and running track like her sisters. She also enjoys singing in the choir and this year she added being a SPOON in the high school production of Beauty and the Beast to her activities. She was wonderful.

Max has adjusted to life at Pitt and to the rigors of NROTC. He seems very happy. He will be home at the end of April. Your example of putting others first has clearly impacted Max and Maggie. Max will serve on a US Navy ship this summer, and Maggie has begun her clinical rotations as a nursing student. Maggie loves to share with all of us all that she is learning. She decided to study nursing after thinking back on the time she spent with you at St. Jude. The impact of your nurses, like Jenn, Sarah, Franja and so many others, who made each day better for you and for us, inspired Maggie to follow in their footsteps.

We continue our work both with your Foundation and volunteering for St. Jude on the Quality of Life Steering Council. This year marks our fifth year of service. We serve as Parent Educators for nurses, teaching them from our experience with you about what really matters at the end of life. We also share our experience with the Fellows; teaching the next generation of doctors how to compassionately share difficult news. We can even add to our resumes that we have taught at Harvard Medical School as we taught a session with Fellows at Dana-Farber and then spoke at a medical conference on the impact of involving bereaved parents in hospitals.

This past June, St. Jude hosted the first Pediatric Palliative Oncology Symposium.   Drawing from the experience we had with you and the Quality of Life team, dad spoke to over 400 doctors and clinicians about your journey. We will again host the 2nd annual Symposium in September 2018. Dr. Baker continues to share your story around the world and also presented a TedTalk this past year and spoke of you and dad.

 

Remember Marit? She was in treatment with you. She is coming up on her 10th anniversary as a survivor! Her mom, two other St. Jude moms and I filmed a video this past year. The video, called the Soul Sisters, won a Telly award. This video has been shown at two St. Jude events and raised much needed awareness and funds for the hospital in your memory and honor and in the memory and honor of Keeley, Brogan and the other kids who lost their fight to cancer.

https://vimeo.com/joebrandmeier/review/218864688/8f1661fe87

We carry on with the mission you entrusted to us. How did you know that we would need something to focus on to help us heal and rise above our pain? All those prayers you offered must have given you insights. Thank you for inspiring us and leading us until we join you in our eternal home. While we miss you every day, we are ever grateful to you for all you taught us through your own life about acceptance, inspiration and prayer. We hope our actions make you proud.

 

Videos from Catie’s Annual Letter

St. Jude Soul Sisters-

https://vimeo.com/joebrandmeier/review/218864688/8f1661fe87

Dr. Baker TEDTalk-

Making a Difference-

http://local21news.com/news/making-a-difference/honoring-caties-wish

 

 

The Circle of Life

M.E. in front of the    St. Jude C.R. Hospital

Catie Team,

 

               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.    

M.E., Mia, and Molly in Memorial garden

                        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.htmlMax 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 8th 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 6th 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 80th birthday because I may not make it to my 8th.”  We did celebrate his 80th in 2008, with Catie, and now, just short of his 89th, 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!       

 

M.E., Molly, and Mia at Catie’s favorite piano at the Peabody

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