News & Events

Happy 22nd Birthday, Catie!

March 2023

My sweet Catie,

Happy Birthday!  Each year we share with you all the efforts taken during the past year to further your last words, “Do all you can so that the next family’s journey is better.”  It was an ambitious request to give to us as we were trying so desperately to hold onto you rather than let go of you.  For my part I wanted to stop the world and take up the task of being your personal historian.  Even in the seven years we were blessed to have with you it would have taken me a lifetime to complete the work “The Catie O’Brien Story – lessons for a life well lived.”  We do our best to hold onto all our memories and share them with others; donors, grieving parents, medical staff; all those who will listen.

This past year we continued our work supporting the efforts of Penn State Health, THON as well as St. Jude Children’s Research Hospital, by teaching communication skills to Fellows, Child Life Specialists, and Pediatric Oncologists at the Global Academy.  We continue to listen to the tears and memories of grieving parents; we understand their loss and truly feel no one should be alone in their grief.  We participated in the creation of a podcast for grieving parents based on all of the research we have done.  We continue to speak at events and share the lessons you taught us with donors hoping they, like you, will fall in love with St. Jude and join their mission and yours.

We are not alone doing this work. Your brother and sisters are doing their part as well. Maggie has finished her Nursing Residency at Penn State Hershey, where you had your surgery. She is now working at Penn State’s Hampden campus caring for patients and making an impact just as your nurses made on you and her. Max is serving in the Navy. We felt his commitment when he missed both Thanksgiving and Christmas to be on watch; knowing we were free to celebrate because in some way he was keeping us safe. Your biggest influence was on Mia. She changed her career path after reading your patient files and doing research on your tumor.  She now wants to be in the lab finding cures for kids like you!  After she graduates early this coming December she plans to continue studying Biology and hopes to go into cancer research.  Molly graduated from high school in May and is away at college studying English.  She is another one who seems to love research.  That leaves M.E.; she is driving now, can you believe that!  She is finishing basketball, getting ready for lacrosse season and looking for the right college for her.  This year she put up a THON fundraising page for you.  They all make us proud, just like you do.  Yes, you still do make us proud as we remember how hard you fought, how big you smiled and how much you laughed.

Remembering you is most difficult in January, the anniversary of your death. It is still heartbreaking, and we imagine it always will be.  It is softened, lessened if you will, whenever we share you with others.  Valentine’s Day is the anniversary of GP’s death.  On anyone’s calendar there are days of both celebration and sorrow; both are important and in my opinion, both should be marked in a special way.  I remember GP and as I ponder his life and his impact on my life, I see another lesson to be learned.  Do you remember that GP stands for Grand Pop?  As we got older it seemed appropriate to change his name as we were not too old to have a grandfather but he was too cool and involved in our lives to still be Grand Pop and so he became known to many as GP.

GP lived into his nineties. He lived beyond his parents, wife, sisters, friends, and his son, Billy. GP died the year before you were diagnosed.  I think if he had had to watch me go through what he and Mom-Mom went through it would have crushed him.  His Billy died from leukemia before the doors of St. Jude opened.  There were no treatments.  Families whose children had cancer didn’t have the hope that Penn State and St. Jude offer families today.  Children died and families mourned together and grieved alone.  Yet when I think of GP, I think of a loving, storytelling, avid reader who loved crossword puzzles and was a wonderful grandfather who joined us for vacations, played with us as kids and played those same games with you as your Great Grandfather.  He wrote great cards filled with insights and memories. He wrote to you before you could even read, signing his cards GGP.

I never spoke to GP about his son Billy. I loved him enough to know he was happy talking about what he wanted to talk about and even though he loved history he shied away from discussing his own. I was born about ten years after Billy died, and GP lived for more than fifty years without Billy.  We have been without you, Sweet Catie, for fourteen years now.  We have learned that time does not heal all wounds but allows us to find a way to continue living and loving those no longer physically present. GP’s life and his willingness to continue living after so much loss taught us that how you live your life honors those like you who have gone before us. What people remember most about GP is not his losses but his stories and his love for his family.

As we were writing this letter the image of the red doors at St. Jude were off in the distance. They are revolving doors, the doors to the Children’s Hospital at Penn State are also revolving doors. It is always the hope that the sick child enters those doors and the healthy child exits. How perfect would that be!  We know that there is more work to be done “so that the next family’s journey is better” — do you remember saying that to us? We remember and we continue doing our part in your memory to care for that next family.

Each of us fill our lives with many things.  Some stay with us for a long time and others, like fireworks are impactful but don’t last.  You, my Sweet Catie, were an amazing fireworks display; just like the ones you so loved at Longwood Gardens!  We wish you a Happy Birthday!  We wish you a cake filled with candles to blow out and that all your wishes come true.

For all those reading this, our wish for you is that you have and take advantage of the opportunity to love those who are present in your lives. Moments are fleeting and precious but love is a lasting gift.  We wish you wonderful memories of those who are no longer present and peace; knowing that your love remains.  We want to thank you for supporting the foundation that bears Catie’s name.  Your support allows her wish to come true in so many ways for families impacted by pediatric cancer.

God is good, all the time,

Mom and Dad

 

Happy 21st Birthday Catie!

March 2022

Happy 21st Birthday Catie,

Each year as we write this letter to you and share it with so many who love you, miss you, and support your mission, we pray and talk about the past year and what we want to say to you. This year, I am filled with missing you. As we mark this milestone birthday when you should be celebrating rites of passage into a new stage of adulthood, I am struck by the reality that we have now celebrated twice as many birthdays without you here than we did when you were here with us. Just thinking of that causes me to sob for I long more than ever to take my little girl into my arms and hold her. Perhaps it is the on-going pandemic and the suffering of the people of Ukraine, but I find myself missing you more than ever this year.

And then I stop and I take a moment and I allow your example to guide me. You lost more than any of us who mourn your absence and yet courage and joy were the faces you showed the world during your battle and especially as you approached the end of your life on earth. The last Thursday with us, just three days before you died, you simply sat and watched the rest of us with a look of peace and contentment on your face as if you were making sure that when you left us we would all be okay. This is just one more way that I can honor your life; to follow your example of battling with every ounce of my being and then accepting peacefully the realities of this life. Your grandfathers, one with you in heaven and one blessedly still here with us, embrace and understand both the battle and the acceptance, in part because they, like us have you as a role model.

We have other role models as well who continue to fight battles similar to yours. This year as we mark thirteen years since you left us, St. Jude marked their sixtieth anniversary since the doors of the hospital opened to all of the word’s children regardless of their race, beliefs, or ability to pay. Thousands of kids like you fight their battle each day, and although more of them than ever win their battle, so many still succumb to their disease and we feel their loss. In those moments, we remember the mission you left us to eradicate pediatric cancer through prayer and research and we forge ahead.

Your mom, more than anyone, stands and honors your journey. The countless hours she spends thinking about and actively supporting families who have lost a child take a toll. You know how empathetic she is and as she listens to hundreds of grieving families, I am sure you are with her, for without you holding her hand, I do not see how she could do all that she does. Thank you for taking care of the love of my life! As for your sisters and brother, thank you for taking care of them as well. Maggie is amazing; as she leaves each evening to start her twelve hour shift as a Neuro-ICU nurse, I am filled with peace to know that the patients she cares for are blessed to have her as their nurse. Max is an Ensign assigned to the Bataan and is at sea. Please watch over him and keep him safe. Mia has come so far since our last letter to you. She is a Sophomore studying to be a Physician’s Assistant. Last year she came to visit your grave on your birthday and was struggling. Since then, she has cared for herself so beautifully and to see the joy on her face or hear the pride in her voice fills me with gratitude. Thank you for looking out for your little sister. Molly will graduate this spring and will be off to college next year to study and become an English teacher. She is such a hard worker and in many ways reminds me the most of you as she quietly and without fanfare cares for so many in her life. M.E. is wonderful. She does so much, from being a fantastic student to playing basketball and lacrosse and yet she is so hard on herself. Instead of celebrating a great score on a test, she beats herself up for the one question she missed or instead of celebrating a great game, she thinks about mistakes she made. Sound like anyone you know? You were just like that! Please help her to go easy on herself. As for me, I am so blessed. I get to be a husband to the most wonderful person I have ever known and a dad to seven children who provide me with more pride and joy than any father could hope for. I have been able to share your story with more people this past year than ever before and watching their faces as I talk about you, I know that you continue to make such a difference.

One of the fears you shared with your mom and me was that you would be forgotten. You are not. I get to see the difference you continue to make in those that knew you and those that have come to know you. You continue to change lives for the better; whether it is through the power and courage of your example or through the influence you have on those of us who look to you for your intercession. I met a family with a seven year old son at the Bronx Zoo this year and he was fighting a brain tumor. The treatment plan he was on was the same one you were on with two differences. He was able to be treated at his local hospital and stay home with his family and friends, and his treatment called for thirty-one radiation treatments. Do you remember that you were the first kid ever to get thirty-one radiation treatments? In part, because you blazed that trail, the treatment plan changed and that seven year old and many more like him are alive. Your legacy continues in so many ways and I am so proud of you.

And so I end this letter to you the same way I began it, with tears in my eyes and a deep desire to hold you in my arms and tell you I love you. You are amazing, Catie, and I am honored to be your dad and your voice to so many. Please keep us all safe, please help us through all of the challenges we face in the world today and until we meet again, hold us all in your beautiful heart.

Love always,
The Fab 5

 

Happy 20th Birthday Catie!

March 2021

Happy Birthday Doll Baby,

Do you remember when I use to call you Doll Baby?  It is a term of endearment I learned from Mom-Mom (my mom) and GP (my mom’s dad).  You will always be my Doll Baby.  I love you.  I miss you so much and yet somedays it feels like yesterday was the last day I saw you, buried my face in your neck and counted your freckles.  Oh, how I loved kneeling bedside your bed and watching you sleep when it was just you and me living in Memphis.  I would sit there watching you, being with you and willing you to fight and live and begging God to allow the same.

Catie in protective mask, hair covering, gown, and glovesThese past twelve months more people than ever understand how we both felt when we were “just us” in Memphis.  I did not realize as we wrote to you last year how long COVID would last or how many would be impacted.  COVID bought many to their knees as they prayed for their health and safety as well as the health and safety of their loved ones.  COVID had everyone wearing masks like you did after a round of chemo.  Like in the days with your counts being zero, masks were once again stored in Ziploc bags in the car in case someone forgot to bring a mask.  How often did you “forget” because you knew I would always remember?  I think Molly does the same thing because she like you knows I always have masks to spare.

Something else COVID has done, is isolate many friends and families from one another. You had Skype to keep you in contact with your siblings and classmates.  When you came home for your break between Radiation and Chemo, you would use it to “see” Molly and M.E. in the laptop screen and then would walk downstairs or into the next room and see them for real.  Remember how it was not the same once we returned to Memphis?  Many people have felt that isolation this past year, even when they had Zoom.

We are still grateful that Zoom, Google Classroom, WebEx, FaceTime and other such platforms exist.  It was through these that everyone here was able to finish school last year and begin again this year.  Dad’s new job went on-line and having him work from home was a blessing.  Maggie came home and continued working in the ICU at Holy Spirit (she is so brave, and we are so proud). She will graduate in a few short weeks and is applying for an ICU Residency.  Max came home, finished his semester and was a TA on-line.  He is back at Pitt and will also graduate and be commissioned as an Officer in the US Navy in May.  Mia graduated from high school and began college on-line.  Mia also began accruing patient care hours required for Physician Assistant majors as she worked at an assisted living facility caring for those with memory issues (she is amazing).  Molly finished her sophomore year and started her junior year on-line.  Can you believe she will be applying to colleges?  She is also learning to drive and will have her license soon.  M.E. graduated from 8th grade and now is at Trinity with Molly.  She made the JV Basketball and Lacrosse teams.  As for me, my work at both Penn State and St. Jude continued.

See even though many things in the world changed with COVID, kids still were diagnosed, went through treatment and still 1 out of 5 of them died; leaving behind parents and siblings, friends and communities all grieving and in need of support.  My work in helping the grieving find resources did not pause.  The need for parents to be listened to, heard, and understood was greater than ever this year due to the increased isolation.  So more than ever the number of programs needed to support these grieving families increased and many had to be created or modified using virtual platforms.  Every day while Dad is working for St. Jude connecting with donors, I am listening to mothers as I remember and honor all of those who were there for me.

You will never believe this; Da is out there pulling grapevines out of the trees in his backyard and creating wreaths.  He talks Mom-Mom into making bows to decorate his creations.  Then he loads up his car like Santa and like a good salesman he goes to all the businesses, offices, and stores in and around Basking Ridge telling anyone who will listen about you and how brave you were as you fought your fight.  You have a very special grandfather.  He singlehandedly raised so much money for Catie’s Wish this past year; a year with a global pandemic!  To all our new donors who learned of us from Bob Closkey, thank you for your support!

I don’t even know how to tell you this.  I know you know.  Telling you makes it more real.  My fingers won’t even type a sentence.  I keep typing and backspacing.  This fall I felt the agonizing pain that your siblings, the Fab 5, have lived with since you died.  This September your Uncle Bobby died of cancer and I am still reeling.  The hole in my heart has a Band-Aid over it for sure.  I never quite understood how the Fab 5 felt, now I do.  Siblings, love them, hate them, be friends with them or ignore them they are still there; part of your past, part of you and when they are gone the hole is overwhelming.  Aunt MaryBeth, Brian and Catherine decided that for those who wished to give in honor and memory of Bob they should give to Catie’s Wish.  Your foundation was blessed by so many who in one way or another were blessed by knowing Uncle Bobby.  To all our new donors who came to know us through Dr. Bob Closkey, Jr. we are so grateful for your support.

Journal cover that reads "Just Mom and Me"I must confess I did a crazy thing in response to losing my brother.  We rescued kittens.  This Christmas when I was going through a few of your things, I still can only handle about one inch of one box of your things each year, I found a journal of yours (pictured here) and you wrote that if you could have any pet it would be a kitten.  It seems like all the good things I do bring me always closer to you.  Are you whispering in my ear?  If so, keep whispering.  Molly has named her kitten Biscuit and M.E. has named hers Boots.  They are so fun, so sweet and they make me laugh and remember Bob and help me feel close to you.

The pendulum keeps swinging.  Life begins and life ends but this year as with every day since you died it is the time that is spent in between the two that really matters.  Thank you for being my Doll Baby.  Thank you for loving me and for the honor of being your mom.  Thank you for allowing me to take care of you when you were sick; you were so brave, and I am so proud.  In many ways it was through your death that I found the purpose and meaning for my life, outside of loving your dad and the Fab 5.  You opened a door in my heart for being there for others and I thank you for that!

I love you, my darling girl.  Happy 20th Birthday!  Continue guiding us as we live to make you proud.

God is good, all the time,
Mom

 

Ten Years of the Catie’s Wish Foundation

 

March 2020

Our Darling Catie,

As I sit and write this letter to you, I am blessed to be in one of your favorite places in the world, the Memorial Garden in the Pavilion at St. Jude.  The fact that you came to love this place is not only a reminder of your battle, but more importantly, a reminder of how you fought that battle and passed it on to all of us that continue to live the legacy you left behind.  It has been a full and meaningful year, and an amazing TEN YEARS since the foundation bearing your name began.  There are times when your battle and passing in 2009 seems like just yesterday, and other times, when your absence is still so tangible that it seems like forever since we have seen you and held you in our arms.  The stark reality is that even after eleven years, we miss you and only the wisdom that you provided in leaving behind your mission keeps us going.  It really is that simple, had you not challenged us and provided us with your wish to eradicate pediatric cancer through prayer and research, we would not be in the good places we are.  You saved us by directing us to make your life have meaning beyond your seven years; thank you!

The Fab 5 – 2011

When we say that it has been an amazing ten years, we are not kidding.  Through your foundation and the supporters who respond so generously to each of these letters as well as our on-going relationship with St. Jude, more than five million dollars and six million prayers have been dedicated to your mission.  In addition, we have been able to help so many families at both St. Jude and Penn State Hershey whose children did not survive their battle with cancer.  Your mom was instrumental in creating the first ever bereaved family Open House at Penn State modeled after what we have done at St. Jude for years.  We continue to educate doctors and nurses to provide better care for patients and families.  We have gifted St. Jude patients with ten years’ worth of “happys” thanks to Candee’s great work.  And we continue to raise awareness and ask for prayers for kids currently in treatment at schools throughout the country.

Yet with all of that, the amazing part is that others continue to be inspired by your story and then choose to help us do the work you left us, (perhaps they are inspired by more than just your story, perhaps you are gently pushing them from heaven!)  Ames contacted us and asked if they could support your mission, Penn State approached us and asked that we help them build their bereavement program.  Your grandfather, (Da), has used his salesmanship gifts to market grapevine wreaths that he makes to raise funds and awareness.  Patient families and their supporters reach out to us as well looking for guidance, support, a compassionate ear, and your intercession.  We know of three cases where people prayed to you and either they or their loved one was healed.  I’m confident there are more cases that we may never know about, and that’s okay.  It’s not about you, it’s about your journey inspiring them to turn to God; that’s the gift you continue to give to us.  The battle continues.  Kids still get cancer every day, it still touches every community, including ours where two local families are in the fight of their lives; and even worse, kids still die.

The Fab 5 Today

The other news that we want to share with you is your impact on each one of us.  Maggie continues to be inspired by the nurses that cared for you and will be graduating nursing school next year.  She also led the Fab 5 on a project to create a grief journal.  It was printed this summer and distributed at St. Jude’s Day of Remembrance.  All of the Fab 5 contributed, with your sisters sharing their memories and thoughts and with Max providing the artwork. It is hard to believe that the Fab 5 were ages two through eleven when you died and are now thirteen through twenty-two.  Max will be graduating next year and will be commissioned in the Navy.  Your three “little” sisters are having a great year.  Mia graduates this year and will head off to college in the fall to study to be a Physician’s Assistant.  Molly will be a junior next year, and M. E. will join her in high school.  The three of them went to the St. Jude walk this September and Mia got up and spoke because mom and I were stuck in Atlanta coming back from St. Jude.  And then the three of them all appeared on the St. Jude radiothon and talked about you and St. Jude.  You really have inspired all five of them and we are so proud of who they are and are becoming.  Your mom is equally amazing and has been honored two years in a row for her volunteer efforts as a fund-raiser and for her educational and bereavement efforts at the hospital.  You changed our lives on April 23rd 2001, and you changed them again on January 25th 2009; and in both cases, our lives have been enriched.  You left us with the words, “continue to do all you can for St. Jude so that the next kid and the next family have a better journey than we did”.  We try our best to do that each day in how we live and what we do.  I have even been blessed with the opportunity to work directly for St. Jude and ALSAC so that I can fight for kids and their families every day, just like you asked me.

We do what we do and we do it to the best of our ability.  We do it with your heavenly support and with the support of many who hear your story and respond.  One of the doctors we have been blessed to work with just published a paper about hope.  We hoped that you would beat your cancer and live and be fully healed and while that particular hope was not realized, a greater hope has been.  Your life and your story has inspired and impacted millions; millions of dollars, millions of prayers, millions of people.  Your journey and the legacy you left behind has and will continue to offer hope well beyond your seven years.  Your legacy, now celebrating its tenth year allows you to live on and to fulfill your mission and the mission of St. Jude; to save the lives of children.

Thank you for your wish, thank you for your life, and thank you for all the times you lift us up.

Love always,

 

 

Mom, Dad, Maggie, Max, Mia, Molly, and M.E.

 

As you receive this, the world is in turmoil and there are more questions than answers and the only certainty for many of us is uncertainty.  We know the feeling.  We reflected on the time that Catie was in treatment and the unsettled feeling that accompanied each test, each treatment and not knowing what either today or tomorrow would bring.  The only way we were able to get through that season was with your support.  As each of us navigate the unfamiliar waters of this season of uncertainty, please know of our prayers for each of you and lean on Catie as a source of strength, of peace, and of support.

God is good, all the time,

 

 

Happy 18th Birthday Catie!

My sweet little girl,

Catie O'Brien with her birthday cake

7th birthday

As another April 23rd approaches, my thoughts, while never far from you, turn in earnest to you and to the legacy you have built even in your absence. It is both a hard time and a wonderful time. Hard, because I never feel the physical void as poignantly as I do at this time of year, and wonderful, because into that void, you have inspired and directed so much goodness. The truth is, I miss you; yet when I balance that against all that has and will be achieved in your name for so many, the sacrifice seems (almost) worthwhile.

The reality is my dear Catie that I have spent a great deal of time thinking about you in what would have been your senior year in High School. Your class, the class of 2019, is a wonderful group of young men and women and as they reach milestones and complete their high school years I wonder what you would be doing if you were still with us this April 23rd. For sure, we would be having a major party. Later that week, I would watch in awe as you got ready for the prom and I would give some young man a handshake and a look that said, please take care of my daughter. By April, you would have already decided on where you would be going to college next year and we would be so proud of you! You would be in the middle of Track season and getting ready for Senior day for yet another sport after Cross Country and Basketball. Do I know for sure that this is how April 23rd would have been? No, I do not, all I know is that it is not how it really is.

So how is it? How has the void been filled? It has been filled in so many wonderful ways, ways that honor your wish and the mission you left us, to eradicate pediatric cancer through prayer and research. We are approaching two million individual prayers logged onto your website. Two million times that people have not only prayed for children like you, but have taken the time to log onto the website and let us know. In addition, the children of St. Columbkill and others will again be coloring cards and praying for the patients in treatment at St. Jude on your birthday and sending them a purple pinwheel.

The void has been filled with more than just prayers. It has been filled with people who continue to support the research that occurs at St. Jude. Individuals who pledge their monthly support. Corporations who match funds. People who sponsor events and people who attend them. All of them honoring the battle you fought by doing what they can to help the next child and the next family have a better journey and a better outcome than you did. Why do they do it? They do it because we tell them your story, we let them see a glimpse of who you were and are, and they are moved to open their hearts and celebrate you and the legacy you left behind.

Between the prayers and the sacrifices of time and treasure that people make to support you, your mission, and St. Jude, no one does more to keep it all working than your mom. You must be so proud of her and all she does in your name. Every time she picks up her phone and talks to a mom whose child has died, every time she texts a mom who has just received a bad report from their child’s doctor, every time she sends a recommendation for one of the hundreds of books she has read to a grieving parent, she keeps your memory alive. When she heads to St. Jude and teaches doctors and nurses the best way to deliver life-altering news, she tells them about you and they become better clinicians. When she listens to parents who are mired in the midst of their grief and offers them the hope that they can and will survive, she honors you and your battle. And when she turns from the hundreds of hours of volunteering and hugs your brother and your sisters, they feel not only her love, but yours as well.

The Sensational Six in 2008

2008

Your brother and sisters are also amazing. They each have their moments of grief that show up at unexpected times and in unexpected ways. They were so young when you started your battle, and in the intervening ten years they have gone through so much of the normal growing up process and then have the extra layer that your battle and loss meant to each of them. Maggie continues in Nursing school and has added a Psychology minor so that she can best help her patients. I am confident that she will be a great bedside nurse and also may end up teaching Nursing to others. Max is thriving at Pitt as a Computer Engineer and will spend this summer with the Navy and Marines sharpening his skills and focusing in on where he might fit when he graduates as an officer, (and hopefully a gentleman!). Mia has grown into a wonderful young lady and a leader in her class. She is so talented and as long as she believes in herself as much as I do, she will accomplish so much. This summer will be a big one for her as she picks a college that she can call home and starts to understand what her major might be.

The Fab Five in 2018

2018

Molly joined Mia in high school this year and her freshman year has been wonderful. She has emerged as a leader for her class, has done well with both her schoolwork and athletics, and has settled in with a good group of friends. M.E. is the last of the O’Briens at St. Joes, and her seventh grade year has been wonderful. She has great grades, great relationships with teachers and her fellow students, and has enjoyed basketball season and is just starting track and lacrosse season and was in the play at Trinity. In all, we are so blessed that the Fab 5 are generally healthy, good kids who challenge us to be the parents we are supposed to be. They think of you often, talk about you when they think it is appropriate, and do their best to forge their own paths.

One of the events that has been hard on each of them is when their schools have mini-thons or dance-a-thons to support childhood cancer. There is usually a local family that comes and thanks the students for the event and the stories hit them pretty hard. This year, your mom and I asked to be the local family for the Trinity Mini-Thon as we were both a St. Jude family and a Four Diamonds family. Four Diamonds is the fund raising arm for Penn State Hershey where you were operated on before you and mom went to St. Jude. The event went very well and the school, led by your class, raised a record amount of funds to support families. You continue to inspire. We also have begun to work with Penn State Hershey on a Quality of Life and Bereavement program. The one we have worked on and refined at St. Jude is ready to be duplicated and what better place to do that than at your other hospital where you began your journey.

Happy birthday little girl. Please know that I love you and I miss you, but that I know that you are right where you are supposed to be, home with your Heavenly Father. Keep blessing all of us who strive to do the work you left for us; keep showering your love upon your mom and your siblings, and keep that beautiful smile so that every time I close my eyes, my heart is filled with the sight of your smiling face. We will keep your mission alive and will continue to ask all that we know and meet to color their calendars purple on April 23rd and to pray for an end to childhood cancer so that the words of your final interview resonate and come true. “Pack up your bags, get out the door, you don’t need chemo anymore!”

God is good, all the time,

Family signatures
Mom, Dad, Maggie, Max, Mia, Molly, and M.E.

 

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