Hayden loved Legos. Hayden loved to hold thumbs. Hayden loved to laugh and even more, he loved to make everyone around him laugh. Hayden loved his brother and sister. Hayden loved to tell you what to do. Hayden loved dogs. Hayden loved skinny jeans. Hayden loved to love.
Hayden’s first two years were the same as any other child. He played like every other little toddler boy. Close to his third birthday, Hayden began to urinate a lot and had achey legs and arms. Eventually he was diagnosed with viral cystitis from and unknown origin and was noted to be slightly anemic. The viral cystitis eventually went away and the anemia and joint pain worsened. I can remember vividly taking him to his pediatrician and him having a melt down in the office and I insisted something was wrong. Labs were ordered and I was instructed to call in a few days for the results. The next day, my heart sank, the pediatrician was calling me. “Melissa, are you sitting down? You need to pack your bags and go straight to Children’s.” We packed our car and headed to Children’s National Medical Center in Washington, DC. Little did we know this would be the beginning of the life Hayden would know.
Hayden’s hemoglobin was extremely low, he received a red blood cell transfusion right away. After that, every test imaginable was completed on Hayden; x-rays, blood draws, EKGs, echocardiograms, bone marrow biopsies and no one could quite figure out why Hayden’s Hemoglobin continued to drop. We were sent home with a follow up in a few days. The pediatrician back home told me that my best bet would be for this to just go away, that it was just a virus that had affected his bone marrow and we would never have answers. I can remember telling him that I wasn’t ok with that, I needed answers, I needed to protect my son from this ever happening again. I didn’t know what he meant then… I do now.
On our follow up visit, Hayden’s hemoglobin had dropped again. After a few more weeks with multiple blood transfusions and still no answers, the hematologists decided to treat him for aplastic anemia, which he didn’t really have but we didn’t have any other answers. The treatment didn’t work. Eventually, Hayden got sicker. His liver and spleen were very sick, his bone marrow was becoming fibrotic and now not only was his hemoglobin low but so were his white cells and platelets. Even more test were run on him, he had a port and a PICC line, blood transfusions daily and he was inpatient more than not and most awful, he was in pain. Multiple diagnosis were being thrown around but Hayden didn’t fully fit any clear diagnosis. Eventually a full body x-ray was completed and lesions (tumors) were noted on a majority of his long bones, including his skull. In laments terms, his bones looked like swiss cheese. While his bone marrow began to mimic a disease called Hemophagacytic Lymphohistiocytosis (HLH), he didn’t really fit all the symptoms for that disease, but these lesions on his bones, mimicked another Histiocytic disorder known as Langerhans Cell Histiocytosis (LCH). The lesions were biopsied and there were no Langerhan Cells, thus excluding LCH. Still puzzled and a little boy who continued to decline, the doctors decided to combine the treatment protocols for HLH and LCH, leaving Hayden with a 40 week chemotherapy protocol.
Meanwhile, what is Histiocytosis? Not only did Google not know, but neither did the majority of nurses and doctors. This left us terrified. People would often say “Well, at least it isn’t cancer.” I would always reply, “I wish it were, there would be a treatment protocol and research for that. There are brochures in the lobby, non profits to help, government funding.” As a family we felt lost and Hayden was losing at a rapid pace. The chemotherapy began and Hayden lost his hair but not his spirt! He continued to play with the other kids in the hospital and complete craft upon craft. Around Thanksgiving 2010, with no improvement from the chemotherapy, Hayden became septic and was rushed to the PICU. He was yellow, had ascites, and was lifeless. Once in the PICU the methodical chaos began. Multiple lines running into multiple IV pumps, an arterial line was placed and his blood pressure just wouldn’t come up. What sepsis didn’t know, was that Hayden may have been rare, but he was strong and with the correct antibiotics, Hayden survived his first bout with sepsis. However, his hematologist realized that they chemotherapy wasn’t working. His doctor then approached us with a treatment, daily injection, that had only ever been used in adults to treat a type of Histiocytosis known as Erdheim Chester Disorder. It had actually only been tried in 5 adults with unknown success rates. This was our only chance, so we went for it. It was Hayden’s Magic Bullet! Within days he was himself again! Laughing, loving, playing and being a little boy. Throughout the next year, Hayden was able to go to preschool, play and live a fairly normal life, only requiring a handful of blood transfusions and his daily injection (which he HATED).
Unfortunately, after following his bone marrow pathology reports over that year, we realized that the injection was only a bandaid. Although he appeared to be healthy on the outside, his bone marrow continued to get sicker and the fibrosis was growing. This brought us back to the drawing board. Hayden’s case was even taken to Italy for the Histiocyte convention to get opinions from experts from around the world, the only treatment suggested was a bone marrow transplant. After many discussions, we opted to go for the transplant. Keep in mind Hayden and his disease were rare so we were not surprised when only one match in the entire bone marrow registry matched Hayden and then it turned out to not be a viable donor. Hayden’s only option left was a double umbilical cord transplant. We had a long meeting about the pros and cons of transplant. And November 2012, Hayden received the cells that were meant to save his life.
We were told that since we used umbilical cord cells, he was not likely to get graft vs host disease (GVHD) and that since he had fibrosis in his marrow it may be difficult to engraft, which is why we used two cords. Well, again, Hayden being rare, got GVHD in his skin and gut and was unable to engraft for many days after the average transplant patient. He was neutropenic for months, meaning he didn’t have any white cells to fight off infection. For months he was stuck in his room but he managed to make the best of it, of course with moments of anger and sadness. Eventually with the help of steroids, his GVHD was able to be controlled and eventually his new cells engrafted! Hayden was able to finally transition to the Ronald McDonald House! Months and then years past and Hayden would be home for a short bit and inpatient for a long while. He needed blood transfusions, IV antibiotics, IV steroids and Extracorporeal Photophoresis (ECP). The 3 day a week clinic visits or inpatient stays, just became normal for us, it was the life we knew. Hayden even knew his medical record number by heart, he knew how to tell the doctors and nurses how to manage his care, he knew how to keep his family moving along in a positive direction.
About a year and a half post transplant, Hayden’s next hurdle came along, he had 25million copies of the Adenovirus and until the end, he really couldn’t get rid of it. Trial drugs were approved to be used and multiple other treatments, nothing seemed to work. After multiple bouts of sepsis, Hayden was tired. He was tired of being in the hospital. The treatment team introduced us to the palliative care team, (aka the PANDA team) where so many resources and options were offered. One day they completed a book with Hayden, called “My Wish” and it was then that Hayden decided he was ready to “Go home” and no more hospital. It was then that the most terrifying word to hear regarding your child came up, “Hospice Care.” After many hours of planning and education, we decided to meet Hayden’s wishes and bring him home. He was discharged on a morphine IV drip, multiple IV medications to be given three times a day, a tube in his stomach for feeds and a long list of medications. On July 30, 2014 we brought Hayden home a day before his 7th birthday, I had never seen him so happy. With the help of our treatment team at Children’s and Hospice Team, Hayden was able to be home for about 6 months, we even were able to take him to Florida and go to LegoLand!!!
Like all good things, our time at home came to an end. Hayden began to loose a lot of weight, sleep a lot, fall and his speech became slurred, amongst other things. His whole body was bruised and he was frail. We took him to the neurologist and he suggested a short inpatient stay for a “tune up.” While Hayden wasn’t happy, it needed to be done. Well, that “tune up” ended up being the beginning of the end. Hayden was declining and there wasn’t anything left to do. We had a meeting and it was determined that Hayden would be living his final days. We decided that Children’s had been his home and the doctor’s and nurses were our family so we stayed there. Hayden was kept very comfortable and free of pain.
On March 29, 2015 around 8pm, Hayden took his last breath in my arms. A moment that will forever be in my mind.
Hayden taught us how to love, laugh, be fair and to fight hard. He never gave up and kept the rest of us strong.