James' story

As told by his mother, Jennifer Bartz

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"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."

- Christopher Reeve

Maybe no one's life is easy.  But certainly when we look at our babies and children, we want them to be.  There's this driving force to protect and prosper our children.  As infants, we do everything we can to make sure every need is met.  As children grow, we start to let them explore and they get a few bumps and bruises as they learn to walk and then run.  And we can accept that for our children because a certain amount of pain in life is expected and we need to develop ways of moving through those life lessons.

 

My son James is my hero.  From an infant, he struggled to breathe, yet he still found a way to develop and grow.  Surprising his medical team, he survived to his first birthday!  His nickname is Little Fighter.  I watched him fight for every breath until he got his tracheostomy when he was 18 months old.  When he no longer had to fight to breathe, he fought to regain the time he lost.  He developed so many skills and continued to make those around him stand in wonder of his feats of strength. He always had a smile, giggle, or warm hug for those around him.  He inspires his nurses and therapists like no other kid they had met.  He has a magnetic, golden personality.  He still had many many complex health issues that kept him returning to the hospital and clinics frequently, but he didn't let that stunt his progress.  When he was three, he could walk up and down the stairs with no assistance.  He could use sign language to communicate conversationally.  He seemed like nothing would ever be too much of a challenge for him.

When he was just over three years old, he got parainfluenza.  I assumed that although he needed a ventilator like all the other times he got sick, he would quickly recover.  But James struggled immensely to wean off the vent this time.  Many new, strange symptoms started to appear.  And then he started having what appeared to be TIA's.  He needed more vent support, had more grand mal seizures, and his heart rate kept going too low.  His specialists could not agree on what was causing these symptoms, and we were referred to hospice.  I did not want to even talk to the hospice team, but I was assured that we could still fight for answers for James and that this would give us better support in doing so.  James's health continued to decline.  He was no longer able to use his rich sign language skills, and struggled to take just a few steps.  Some days he could only lay down.  He was in a great deal of pain, but we weren't able to determine a cause or find medications that helped adequately.  Very few tests were run as specialists continued to disagree about a treatment or management plan.  He soon was unable to tolerate his g-tube feeds.  We were going to attempt to switch to a different formula, but had to switch to pedialyte instead.  Within a few days, he wasn't digesting the pedialyte, either.  One morning, he was unresponsive.  We disagreed with the hospice doctor (who had only met James once) about what to do.  We ended up admitting him to the hospital and had a very difficult time there.  In the end, James seemed to improve and we were able to go home, but the hospice team said he was no longer hospice qualified.

 

James continued to have very serious symptoms.  Nothing was progressing with the New Mexico team, so we were med-flighted to Denver where he had several specialists as well.  In the PICU there, the hospice and palliative care team was immediately called.  We were told he should be on hospice services and they started talking about an appropriate plan for him.  The hospice/palliative care team in Denver (the REACH team) helped manage James' care in a wonderful way we had not experienced before!  The specialists communicated well with each other and quickly began running tests and trying medications.  Several things helped immensely and James started to regain some lost skills.  I believed that he was going to recover, although we were told that he may not. 

 

In November 2018, James started having severe gastro-intestinal issues again.  Scopes revealed that his GI tract was bleeding and he was no longer able to tolerate his g-tube feeds again.  We rushed to Denver and the REACH team helped us navigate what was happening.  We learned that James was actively dying and needed to be in a facility.  The Denver Hospice (an adult hospice facility) opened a room for James, even though he was a kid.  They cared so well for all of us that last week of his life.  He was a hero as he showed great love and care to his siblings, his parents, and best friend.  He selflessly lived those last few days, giving us meaningful last memories together.  I was so thankful for the extra medical support in a beautiful, peaceful setting.  My kids got extra support through art therapy and counseling.  We had people navigate the planning and decisions we had to make in a compassionate, professional way.

 

These experiences have motivated us to provide the same kind of compassionate, professional medical help to families like ours.  There's only three pediatric facilities in the US that handle end of life in-facility hospice care.  Many adult hospice facilities do not offer their services to children because there are so many differences between adult and pediatric end of life processes.  Looking into these issues helped our board understand the need for supportive services as well, not just at end of life, like community-based palliative care and respite services.

 

James' strength, perseverance, and endurance motivates us to live the same way.  We desire to continue his legacy through offering these services to others, compassionately.

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Cariana's story

As told by her mother, Janis Gonzales

When our daughter Cariana was born with Down Syndrome, all I could think about was the long list of things I would need to teach her.  I was surprised to discover as time went on that she was actually the teacher, and I had much to learn from her.  I had worked hard all my life and measured myself by what I achieved.  But Cariana was at completely peace with herself and didn’t seem to mind at all if her “achievements” such as speaking, standing, and walking were delayed by the world’s standards. She refused to be rushed.  No matter how much we tried to work with her on a certain skill, she would wait until one day when she suddenly felt ready and then show us that she could do it perfectly, as if she had been secretly practicing all along while the rest of us were sleeping.

We were blessed with a great support system, including a loving family, wonderful home health nursing care, and Cariana’s oncology team at UNM who were unfailingly kind and caring, even when I called them with crazy questions at all hours.  But nothing they gave her worked for long.  Each round of chemo would suppress her bone marrow for a while, but then the leukemic cells would come right back.  She also lost weight (which scared me almost as much as the chemo did). Meanwhile she suffered painful bone marrow procedures and line insertions.  She was amazingly tolerant of it all, but I was not.  I cried in frustration and felt her pain every time she had to get poked.

In fact, we were so in tune with each other that when she started crying daily (a rare thing for this cheerful, loving little girl) I began to have stabbing headaches at the same time.  I just knew I must be feeling what she was feeling.  And it turned out to be true, because when she was readmitted to UNM once again, they discovered the leukemia had formed a mass in her brain that was causing her terrible pain.  And off we went, Cariana sitting in her little red wagon, waving to her nurses on her way to the radiation treatments which we were hoping would shrink the tumor.

We were trying to get her into remission so she could get a bone marrow transplant, since the recommended chemo regimens had all been tried and had failed.  If she had gone into remission, we wanted to go to Chicago for the transplant, where I had family who could help us.  But her counts never got low enough for that to happen.

When it became clear that her treatment was not going to be successful, we wanted to take her home, but she was still in a lot of distress and required morphine for pain control. The adult hospices in Santa Fe, where we lived, were not comfortable providing hospice for a two-year-old.  With no pediatric hospice available, we ended up spending the last two weeks of Cariana’s life in a hospital room, away from her two slightly older siblings (Placido and Liesl). This was one of my biggest regrets and disappointments because we didn’t get to be together as a family at the end of Cariana’s life.

After her death, I talked to the UNM oncology team and found out they had been thinking of starting a pediatric hospice.  I jumped in and helped in any way I could, and after about a year of preparation, Mariposa Pediatric Hospice was born. While I am thrilled that Mariposa continues to this day, I know there is still a gap between what services are needed by children and families and what is being provided.  Specifically, in-home palliative care services seem to be much needed, especially for those children who need community-based palliative care, respite care, and supports but are perhaps not at the end of life yet and do not qualify for hospice. After helping to launch Mariposa, I became Board certified in palliative care, and thought about working in hospice.  But instead I used my pediatric and public health training to go to work at the Family Health Bureau in the NM Department of Health.  The first program I worked with there was Children’s Medical Services, the state program for children with special healthcare needs, which seemed like a perfect fit.

When I heard about Hero’s Path and met Jen, I knew this was something I was meant to be involved in.  It seems like a natural extension of everything else I have done since Cariana’s death.  Everything I do is in some way an effort to honor her legacy.  It’s as if I can hear her saying “Take the love you have for me and use it to help other children.”  And so I try to do that, every day.

Sebastian's Story

As told by his Mamí, Lourdes

There were 14 years between my first born and my second born, Sebastian. I had waited and anticipated Sebastian’s arrival for years. And I must say that I have never felt more beautiful, than I did during my pregnancies.

He stopped growing towards the end of my pregnancy. Events lead to a caesarian-section and the birth of my beautiful 5 lbs. 1 oz. baby boy. Within 24 hours of life, he was noted to have a heart murmur, which lead to a diagnoses of Congenital Heart Disease and the need for an open-heart surgery.

He grew ever so slowly. It took many months for him to gain enough weight to improve his chance of survival from the need to be hooked up to a heart-lung machine during his open-heart surgery. With his heart now repaired, it became apparent that the assumption that all the other signs/symptoms present were due to his heart condition, was incorrect.

 

Before he turned one year old, Sebastian was diagnosed with not only the Congenital Heart Disease, but with Cortical Visual Impairment, Developmental delays, Failure to Thrive, Low muscle tone, Plagiocephaly and the list grew with each year to include Seizures, Scoliosis, Contractures, Chronic constipation, Cerebral Palsy and Developmental Delays became Intellectual/Developmental Disabilities, etc. His list of medications and list of specialists/medical team also grew as well as his list of medical equipment. He had a g-tube placed before the age of two years and then a major back surgery nine years later. His developmental age was that of a three- to five-month-old and was medically fragile.

 

My initial introduction into the world of “Developmental Delays/Disabilities” and “Special Needs” resulted with the NM School for the Blind and Visually Impaired (NMSBVI) coming into our home followed by Early Intervention (EI) services. And so many amazing people came into our lives and became part of our family. Sebastian become surrounded by a team who quickly fell in love with him and who became his champions in providing family centered care interdisciplinary services. The Medically Fragile Waiver introduced us to wonderful nurses and our extended family grew even more. His Special Education teams at APS were clearly dedicated to him.

 

The last few days of Sebastian’s life are still a blur. He went from being fine to needing oxygen. In last hours of his life, he went from IV sedation and BiPAP, to being intubated, to dying and undergoing Advanced Cardiac Life Support -from which he did not come back. As I had watched him deteriorate, it was obvious that these sudden acute changes would have resulted in long term changes, greatly affecting his quality of life.

 

Sebastian choosing me to be his Mamí has been a great honor and privilege. My worst nightmare came true when he died. He is my greatest mentor, and his life and death are still guiding me.

 

I will say that my being a physician in no way made me a better mother, if anything, it was being Sebastian’s Mamí that made me a better physician.

 

Getting involved with Hero’s Path Palliative Care has become a part of Sebastian’s legacy. And my desire to make a difference with all that he has taught me, to make the world a better place for all the Sebastians’ continues to grow.