Meet the Kids
As you read about the responsibilities of caring for a child with a life-limiting illness on The Need page, you understand a little more about the world that surrounds a child and their family. Below, we share real stories directly from a child, their brother or sister, parent, family member or close friend.
Students from St. Thomas created the following tribute video depicting Maryah’s battle. Special thanks to dear Maryah and her family for their ongoing support of Crescent Cove, and to BOME Productions for their amazing work!
Click on a child’s photo to read their story:
“I am living with (not dying from) cancer.”
Maryah lived watchful of the little things around her…for in doing so she lived life fully…finding love, grace, peace, comfort and joy in usual AND uncommon places. She lived to be 16 years, 8 days and 35 minutes old…though our memories of her will assuredly live on.
About a month prior to Maryah passing, we learned she couldn’t stay at the hospital for insurance reasons. Despite excellent care, the hospital’s protocol also didn’t allow her freedom to leave. So we as a family had a hard decision to make – where will we be together to live until she passes?
On one hand, Maryah knew she didn’t like being confined in the hospital – her spirits would dim once in a while because of her limited freedom. She needed the ability to get outside with family and friends, to be free, to go to church, for walks, to enjoy a drive, to simply go get ice cream, to shop…to do whatever she wanted in that moment!
On the other hand, Maryah didn’t like the thought of going home to live out her days where her family would eventually have to live on with memories of her passing at home…it was too much.
One way she was able to find comfort during this time was deciding on a hospice home. We as a family assumed there were many hospice homes for children available to us. We were puzzled to learn there are no hospice homes for children in Minnesota. After many discussions with an adult hospice home, they agreed to allow Maryah to come to them. After an emotional transition into a setting where there were no other young patients, we were eventually able to settle in, to enjoy precious time with Maryah, and to be free with the benefits of a hospice home.
In the hospice environment, Maryah was able to:
- Enjoy the comforts of home,
- Get out whenever she felt good enough, and
- Be where she could live and pass in peace.
Hospice was a gift to Maryah and her entire family and friends. Children with a life-limiting prognosis and their families deserve a place to “BE” during this sacred time – children and families need and deserve Crescent Cove.
Maryah fought Ewing’s Sarcoma, a type of bone cancer, for over six years. You might recognize her name; the city of St. Paul proudly declared May 7, 2009 “Maryah Tift day.”
The first and most important thing you should know about our son, Ellis: he loved life. Ellis brought light and love to all he met along his path – doctors, nurses, therapists, friends, family, kitty-cats and us. The second most important thing to know about Ellis: he had a difficult life. Ellis was born with a devastating heart defect in March of 2004 and spent almost 1/3 of his short 2 ½ years of life in the hospital, often in the most desperate of medical conditions. Ventilators, feeding tubes and powerful intravenous medications were part of his reality and part of ours, both in the hospital and in our home. The third most important thing to know about Ellis: he let go of this life in December of 2006. Ellis left an unfillable hole in our lives and in the thousands of lives he touched through his story and his spirit.
Ellis loved life. Ellis had a difficult life. Ellis let go of this life. These three statements can give you a succinct storyline, but can never come close to describing the awesome and awe-full privilege of being his mom and dad. Our CaringBridge journal details the weekly, daily, or sometimes even hourly changes in his prognosis, treatment plan and condition. From the moment of his birth until the moment his heart stopped, his medical needs were intense, overwhelming and draining. We were two music teachers thrust into the world of pediatric intensive care, exposed to the unimaginable vocabulary of pediatric hospice care, while navigating the stormy waters of bureaucracy, insurance, home-health-care, medical supplies, therapies, government assistance – it is almost too difficult now to look back. We can only wonder at the courage and depth of strength that the parental instinct inspires: we will do whatever it takes to help our son.
We often wished for a light to guide us through these toughest of times. We could not even imagine the possibilities for home-hospice, for home-health-care, for pain management and peace-giving therapies when we began this journey. We groped along in the dark discovering some support here, a bit there, piecing together a patchwork of support services and leaning heavily on friends, family and our community.
What excites us now is that there is hope out there: Crescent Cove can be that beacon, shining into families lives in the midst of unspeakable grief, pain, stress and fear. A resource for support services, a respite for caregivers, a place of peace and comfort – such an amazing gift for families like ours, for children like Ellis.
It was winter of 2007-2008 when Mary Jacqueline O’Keefe started getting sick frequently. My husband and I assumed that it was related to daycare and that she may have an insufficient immune system. As a mother, I had huge fears of something more ominous affecting Mary’s health. At the time Mary had just turned 2 years old. We were bringing her to various medical experts through winter/spring without a definitive diagnosis.
By mid-summer 2008 the cancer started to take hold. Mary became thin, weak, and in pain very quickly. It took 2 weeks to determine that Mary had Stage 4 Neuroblastoma. This particular cancer is very aggressive with a high mortality rate. Mary’s prognosis was 30-40% survival.
We brought Mary to the University of Minnesota’s Children’s Amplatz hospital for testing to diagnosis her ailment. The staff at Amplatz was wonderful and was quick to start treatment for the cancer. As a mother I was wondering if I should have pushed harder for more thorough testing complete earlier in the year. Mary’s oncologist stated that this particular cancer is hard to catch. Once the cancer starts, it metastasizes throughout the body versus other cancers that have a primary site and grows at that site first before it metastasizes. Looking back at photos of Mary, you could clearly see the quick deterioration of Mary’s health. Mary was a normal plump toddler, and then 2 weeks later she was frail and thin.
Mary bravely endured 6 rounds of chemo therapy, radiation therapy, 9 weeks on the Bone Marrow Transplant Unit, numerous surgeries, IV treatments, medications to combat the effects of the chemo, and multiple blood and platelet transfusions. Mary was officially diagnosed on July 30, 2008 and then passed away on July 30, 2009. It was the hardest thing to watch as a parent and as a nurse; I could not save or protect my little girl. I felt that I had failed as a parent.
I’m sharing this story to voice the importance of a children’s hospice and respite center in Minnesota. Even though the University did a fabulous job with the resources they had available to a child with a terminal illness, I feel there is a need for additional resources for both the dying child and their family.
Mary died on a Hematology/ Oncology floor at University of Minnesota. The rooms were small at the time of Mary’s treatments (prior to the new Amplatz hospital). A small pull out bed was available to the parents for rooming in with their sick child. There wasn’t hospice focus care for Mary till the end, granted Mary’s cancer came back with vengeance. Getting prepared for Mary’s departure was a whirlwind of activity. Again, this was to no fault of the staff’s efforts. They were doing their best with their resources.
It was hard to walk off the Unit with other pediatric patients playing on the floor. I felt envious of the parents who still had their child living in the physical world and I was leaving the hospital without my child; I was leaving empty handed. A one year battle against this ugly cancer and there was no reward for all the hard work. Cancer won the battle with my daughter and it happens every day to someone’s child. It’s a reality no one wants to face. I hope sharing my story about Mary helps to get the needed support and attention to pediatric end-of-life care.
To learn more about Mary and her life, please visit www.marymoonfoundation.org
“Can we have a party on Friday night?”
My son Michael’s life was cut short at the age of thirteen by a rare disease called Schimke Immnuo-osseous Dysplasia (SIOD), a rare genetic syndrome. Michael’s experiences inside and outside the medical community revealed it was not only a fight for Michael’s life but for the life of our whole family.
The road to Michael’s eventual diagnosis of SIOD was a complex journey of appointments, consultations, emergency rooms and hospitalizations. During those years, the medical environment became our home away from home. At one point, Michael was in the hospital at the same time as my husband, Michael recovering from a successful kidney transplant and my husband a mitral valve replacement. Only months later, I, myself, was hospitalized for a double mastectomy after an untimely breast cancer diagnosis. By this point in the winter of 2005, we felt like we had been through it all. In fact, we were wrong.
Further tests revealed that Michael needed a bone marrow transplant and during a minor pre-transplant procedure, Michael’s heart stopped, ultimately suffering a massive stroke. As a family we never left his bedside, holding on to the shreds of hope while doctors searched for answers. Two weeks later, the end-of-life transitional team was called in to what is now palliative care. Tearfully, we started saying good-bye to our hero.
Although the hospital provided everything we needed medically, the sterile environment lacked what we desperately needed to meet our emotional and spiritual needs. Our then 17-year-old daughter joined our night and day vigil at the hospital, so we asked the hospital where a family such as ours, grieving a traumatic turn of events, could stay to rest and mourn openly with extended family. All that was offered was a hotel blocks away with a discounted rate of $99 per night. We booked a room at that hotel, primarily for our daughter’s sake, but spent little time there. It was simply too far away from our dying son at a time when even steps away were too far.
10 days after the initial surgical crisis, Michael went to heaven on March 10, 2005. A pediatric hospice home like Crescent Cove would have provided a more conducive nurturing place for us with Michael in his last days, outside of a cold dreary hospital room. It would have fully supported our entire family’s human experience inside the critical medical experience.
I founded a campaign called Be The Change (BTC) as a result of our life with Michael. BTC represents the return of the patient family perspective in healthcare. Through presentations and blogs, BTC serves as a bridge between board rooms, waiting rooms and exam rooms encouraging dialogue, which forms new partnerships with healthcare providers outside of medical crisis.
I have taken volunteering to the next level by sharing our real life medical experiences and the impact it has had on our human experience. The Be The Change campaign does not only represent my family’s experiences, however, but the experiences of many others, which invites each one of us, in our own way, to Be The Change.
My family, continuing Michael’s legacy as the original change maker, gives a resounding “yes” to Crescent Cove’s campaign and fully supports this type of pediatric hospice facility. It will provide necessary well-rounded care for Minnesota’s ill children and their families when the unthinkable happens. We always stand in hope of a cure, but we must be ready when there isn’t one.
The long awaited moment when baby Shu emerged, our world changed forever – HE Was born without a heartbeat or breath, he did not move or cry. Our son, Levi, had been born with severe brain damage. We were told by the Pediatric Neurologist he would not have the reflexes to clear his airway (suck swallow, gag, choke, cough), his quality of life would be very poor and there was nothing they could do to improve his situation. No medical reason could be given for “why” this happened. It was an understatement to say that Levi’s prognosis was uncertain.
Miraculously, after three long weeks in the ICU we had the opportunity to go Home. As first time parents now facing ICU-level medical complexities, we were elated and fearful to be home. We relied on our faith that there would be a hopeful outcome for Levi: a life full of love and joy no matter how long or short his life might be.
At 22 months of age during a routine clinic visit for Levi, one of our Doctors said to me, “Dannell, I am amazed that we are all sitting in the room today, that Levi is with us, and he is doing as well as he is doing.” In hindsight, at 22 months of age, I would say this was the moment when we could have shifted from running a sprint to running a marathon. Instead, we continued to run at a sprint, providing 24/7 ICU level care at home, doing everything we could day and night to give our child the highest quality of life possible, knowing that at any moment -whether we were with them or not – whether we were awake or asleep- that Levi could die in a moment’s notice.
Our friends at Crescent Cove have taught us, through living out their mission today with generosity and love, that there are key things a family needs to keep going: Respite in both the small and big moments of life. Thanks to Crescent Cove we have had a massage therapist visit our home to give Levi, mom and dad massages, meals delivered, a special trip on a firetruck, and a long weekend get-away.
We as a family have peace of mind that when Levi reaches his end-of-life, we will have a place to go (that is not a hospital) where his medical needs will be supported and we can focus fully on being mom and dad and savoring his final moments together as a family. We are one of thousands of families in MN who TODAY are living with a child with a life limiting condition. It is our vision that every family would have access to quality respite and moments of pure joy to help strengthen and sustain them to run this marathon with perseverance, and peace of mind that when their child enters the end-of-life stage, there is a place they can go and be together as a family. Together we can build this house!
Steven was born on a beautiful day in July, in the island country of Fiji, after a long and problematic pregnancy. We knew something was wrong with our baby because in the first trimester, I had problems with bleeding and had to go on bed rest. By the 5th month of gestation the doctors thought he wasn’t growing properly. After an ultrasound, we found out that his femur bone was 5 weeks behind on development compared to the rest of his body. We had no idea what to expect and no specialist could help us with all of our questions.
The day finally arrived when we got our baby boy. Until then I had hopes that it was just a mistake, maybe he would be fine. But we could tell at once that he had chronic problems. Steven looked like an old man. He had yellow skin with a purple mouth and nose. He weighed about 3 pounds. His head wasn’t totally formed and he had a caved-in or sunken chest, which later we learned was called “pectus excavatum.” He had an extra finger that the doctor removed. His thumbs looked like fingers.
We were discharged from the hospital 4 days later and took our baby home. There were no clothes for premature babies in Fiji. Even the few we got as gifts from friends from Australia were too big.
Contrary to my hopes, Steven didn’t get better. Instead he got worse. He sucked on the bottle but didn’t pull anything out of it. He got anemic and dehydrated within the following two months. When we took him to the doctor, she basically said: “Let him go and have another one.” That’s when we realized we had to come back home and leave the mission work that we loved.
Steven was hospitalized the week before we left Fiji. I slept on a dirty floor beside his incubator, which still had blood and milk stains from the previous occupant. The doctor’s ego was hurt when we told him we would bring Steven back to the U.S. He didn’t want to give us the release to travel. When the day of our departure arrived, my husband went to the hospital, took Steven and me from the PICU, and we drove straight to the International airport.
There is so much I would like to say about returning to America. The care and concern we have felt from others has been so special. At the Los Angeles airport a stranger bought a balloon and sought us out to give it to our five year old son. Children’s Hospital is so much cleaner than the hospital in Fiji. It felt like a five star hotel. What a change, what a wonderful experience!
Our first stay at Children’s was for a little over two weeks. Besides the many tests to find out what kind of medical help he needed, we also tried to find where he fit in the world of syndromes. It was three months later when the geneticist finally broke the news to us that Steven was probably the 25th case known of the “De Barsy Syndrome.” This syndrome has many symptoms, including premature aging. He had cataract surgery at 6 months of age. He wears braces for his hands and feet and a body brace for his back because of scoliosis. He has a chronic case of acid reflux as well. But thanks to God and the wonderful team of doctors, nurses and care givers, Steven is doing well. He loves going to school. He is very playful. He loves playing with his older brother. He laughs at people sneezing. He is our little sunshine.
Every day children are born or diagnosed with life-limiting conditions. Balancing the fight for the life of a child with the responsibilities of the costs associated with medical care causes constant heartaches and emotional strain to the family. Families in this circumstance need community support as the 24-hour care cycle becomes their unrelenting focus. Crescent Cove intends to support these families – freeing up every day cares so that the family can take a needed and deserved emotional and physical break, to spend as they see fit: with their partner, other children, family, or simply to re-energize.