Amazing Addy and her Family’s Journey
January 18, 2017 is the day our world turned upside down. Our 4-year-old daughter Adalyn, or “Addy” as she preferred, was diagnosed with cancer– Diffuse Intrinsic Pontine Glioma (DIPG) — an inoperable brainstem tumor with a survival rate of less than 1% and 7-9 months being the average life expectancy after diagnosis. The treatment options for DIPG are still the same as they were 40 years ago with virtually nothing that will make it go away. The location makes it impossible to remove. It rarely responds to chemotherapy. Aside from various clinical trials, radiation is the only treatment option which usually results in just a “honeymoon” phase before it returns more aggressively.
We spent the first month after diagnosis very busy while taking it all in. Our desire for Addy from day one was for quality over quantity. With the odds already against us, we did not want to spend the remainder of her days in hospitals or traveling great distances for clinical trials that would cause unwanted side effects and probably not help. On January 24th, we met locally with a radiation oncologist at Hampton University Proton Therapy Institute (HUPTI) and decided that we would proceed with proton radiation as our one and only shot. On February 8th, Addy had a port surgically placed for future treatments. Soon after her first day of proton radiation therapy, Addy celebrated her 5th birthday on March 2nd. A little over halfway into proton therapy, we were extremely encouraged with the news that the tumor had decreased in size by 30-40%. After a grand total of 30 treatments, she got to ring the completion bell at HUPTI on April 7th.
Addy was admitted to Edmarc in mid-March when Alicia (the nurse) and Abbey (the social worker) came to our home. I was nervous, but it went so well. The fact alone that your child is being admitted to “hospice” care is scary. But, I found out quickly that they are so much more than hospice. At this point, the home health goal was to keep Addy out of the hospital if possible. They gave me all of the information I needed and answered any questions I had. We decided on monthly home visits because she was stable and not in need of too much additional care.
In April we lived it up on a daily basis. We spent a lot of time having fun, enjoying each other, and just letting her be a kid. We went to Disney World thanks to Toby’s Dream Foundation. We spent time at the beach. We watched caterpillars turn into butterflies, and Addy released them outside with her sister when they were ready. In late April, another MRI revealed “continued further reduction in size” of her tumor. We were thrilled! Our second monthly Edmarc visit with Alicia went well as she tried to get grumpy Addy to smile. Big steroids got the best of that little girl most days!
The end of May brought preschool graduation for Addy – a day we weren’t sure she would even live to see. It was so bittersweet: she was happy but we were sad to close that chapter. A couple of days later Alicia visited and I shared concerns about Addy’s symptoms. Less than 10 minutes after Alicia left, Addy’s doctor called me to review the symptoms and to come up with a new plan. It was such a relief to see how closely (and quickly!) the nurses and physicians work together for these patients.
Summer got off to a rough start when we attempted to go on a family beach vacation the first week of June. After trips to the emergency room and the oncology clinic for vomiting that wouldn’t stop … we cut our vacation short. Addy ended up hospitalized and another MRI looked mostly ok with the primary tumor stable and unchanged from the last. We were discharged, and Rob, the on-call nurse for Edmarc that night, came to our home at 9:30 p.m. to review the orders, medications, and supplies with me and give her the first doses. Several days later, Addy sadly started having seizures. She ended up going to Children’s Hospital of the King’s Daughters (CHKD) via ambulance and having a shunt placed surgically in her brain to save her life. While we were in the emergency room before surgery, a nurse came to me and introduced herself – another Edmarc nurse we hadn’t yet met. I was so happy to meet her and to know that she was able to update our primary nurse. It gave me a sense of peace in the midst of utter chaos.
Dr. Pegram was the in-patient doctor the week of the surgery for the shunt, and we spent time getting to know her and she got to know us. Addy really warmed up to her, and they had a sweet little relationship! In mid-July when Addy’s primary oncologist left, Dr. Pegram took over her primary oncology care. She had a great month or so with very little symptoms, and again … we lived it up day to day. We went to the movies, the Virginia Living Museum, the beach, out to eat, played at the park.
August 2nd brought another MRI, and this time the news was devastating and the prognosis was very grim. Following that MRI, we learned that Addy would likely only be with us here on earth and in our arms for up to a few more weeks. Her cancer had spread to numerous other areas of her brain and there was literally nothing they could do to help her. We transitioned to palliative/hospice care and went to three visits a week. Dr. Pegram herself came out for one of those visits with both Alicia and Teresa. Abbey was so incredibly helpful talking with Addy’s sister a little about what was going on and always bringing arts and crafts. Edmarc was so wonderful those last few weeks: bringing us art projects to do as a family, meals, offering any help we needed around the house, and always thinking of the family.
We went on one last beach vacation the last week of August. It abruptly ended on August 29th when we brought Addy home as she began to deteriorate very quickly. Alicia met us at home to assess Addy not long after we arrived. She stayed until Teresa came and spent a few more hours into the night with us, staying by our side as our sweet Addy peacefully passed from this life to her heavenly home. Teresa helped me wash Addy’s hair as one of the last things I did for her on this earth because it was important to me, and she helped me get Addy’s fingerprints for the beautiful necklace charms that were gifted to us. Both Alicia and Teresa arranged for the funeral home to come. We had a beautiful celebration of life service for Addy, and I was so touched to see Dr. Pegram, Alicia and Teresa there to support us.
Next we transitioned to bereavement services with social worker Sara visiting our home and working with Addy’s sister once a week. She always looks forward to her time with Sara, just as she did her time with Abbey. We have gotten involved with Peace by Piece, Edmarc’s grief support group for children and their caregivers. So far it has been a great thing.
Throughout Addy’s journey (and now beyond), Edmarc was always there…and is very much still here 6 months later. They provided wonderful medical care. They were always willing to listen and work with us and brought meals on more than one occasion. They still offer help in any way we need it and have always spoiled our girls. (But I do know a couple of ladies who have left our home with a fancy manicure more than once!) Edmarc supported every decision we made, answered every question, and were very much available to us whenever we needed them. Addy’s journey was so short, so I thought ours with Edmarc would be too. Sara continues to prove that Edmarc didn’t go away with Addy’s passing. The bereavement services will continue as long as we need them as we try to get on our feet and navigate this new life without her.
Words are simply not enough to thank the staff of Edmarc for the care, support, and love shared with Addy and our family in so many ways this past year. This beautiful organization, with an army of volunteers and donors, blesses families like mine in many ways every single day. They continue to give us hope for our journey and have brought us joy on some of our darkest days. In serving our family, they have become like family… and we are so grateful for the continued kindness and dedication to us. For all of the families served – past, present, and future – we love Edmarc!