…AND SOMETIMES, A MIRACLE IN THE FACEOF HOPELESSNESS
By Abby’s Mom
Our journey with Edmarc has been one of fight and survival. I cannot imagine the past seven years without having Edmarc involved in our lives. They have been there the whole way through, both for home health care and hospice. We are so thankful.
Our now-11-year-old daughter, Abby, started with Edmarc in 2011 at the age of four and a half when she was diagnosed with leukemia, specifically PH+ALL, with a 20% survival rate. As with any cancer diagnosis, we were wading through unknown waters and terrified. Once she was able to be discharged to home, we met our first Edmarc nurse, who made everything seem conquerable. I knew Edmarc’s nurses were always a phone call away for a question or a need for a visit. As time went on, anytime the doctors wanted to keep her in the hospital, I reminded them that we always had Edmarc available. What a blessing. We could do labs at home, access/de-access at home, give Abby IV medications and nutrition and do vials checks at home. So many things that allowed us to avoid a trip to the hospital, saving both time and keeping Abby free from the exposure to all the germs hospitals have to offer.
Throughout these years, the Edmarc nurses and staff have taught me so many things. Not just the hundreds of medical things I’ve picked up long the way, but that it’s all about communication, being an advocate for Abby, and the confidence they have given me that allows me to do so many things at home. Looking back at our journey, I have learned to do so very much. Between teaching us, being there and spoiling! Those things like the incredible Edmarc holidays that make life feel so good. My girls look back at the Santa visits with such great joy.
Abby’s medical journey has been a long one, with her initial diagnosis in February 2011, traveling in March for a potential bone marrow transplant, and the return home in June to continue treatment here because a trial drug worked, spending three weeks of every month in the hospital—some planned, many unplanned—for 18 months after the diagnosis, including many stays in the PICU, frequently being discharged on IV medications.
Abby reached remission, but treatment is long. After the first 18 months, Abby had one year of maintenance chemo, then that golden year …school year 2013-14. Abby ran, played and attended school full time. She had sleepovers, played soccer and she was on the swim team…all those things that a seven-year-old should be doing. We look back at that year with so much joy. Unfortunately it all came to a screeching halt when Abby relapsed seven days into the next school year. Abby’s cancer was back.
Our journey became so very hard that day, September 17, 2014. Abby was in PICU care for two months straight before boarding a life flight to the bone marrow hospital, close to our family. While prepping for transplant, it was discovered that Abby was in heart failure. Just one more thing to add to the long list of issues she already had due to prolonged chemo with the 30 months of prior treatment. But with the prior concoction of meds, we were able to bring her out of heart failure and prepare her for more chemo and radiation, and for the ultimate gift of a day, January29, 2015, the day of her bone marrow transplant. Abby received donated bone marrow from an unrelated 10/10 match from a young man in Germany. We are forever grateful for this gentleman. The bone marrow transplant was the means to the end of Abby’s cancer. The hope that she would remain cancer free forever. But transplants come wit their own side effects and issues, issues that tried to take Abby’s life last summer in July of 2016.
In 2015, Abby remained an inpatient at the transplant hospital for over three months after the transplant, battling Graft Vs Host Disease (GVHD) and infection. Once she was discharged, it was a constant back and forth to the hospital. Finally, in August of 2015, we were cleared to come home. In transitioning home, Abby’s GVHD began to take over; she was in the local PICU and again flown to her new, local transplant hospital that was taking over her continued care. I cannot keep track of all the times and days; it’s exhausting to recount it all. We were able to get Abby stable again, doing IV meds, IV nutrition and pain control every day, along with around 15 other medications to support other things It was a lot. We eventually got Abby home. Of course it came with many trips weekly to the hospital and visits from Edmarc nurses. But home.
Spring 2016 brought great issues. As Abby’s body was tired of fighting and had so many medicines on board, it gave up. Abby was in complete kidney failure and other systems were giving up as well. We tried everything we could, but she ended up on continuous dialysis for five weeks. Then we had “the meeting.” That meeting with her transplant hospital and PICU doctors when they told us there wasn’t any more they could do It was time to start thinking about when to take her off the dialysis and let her go. A conversation no parent ever wants to have with anyone, a conversation that many of our fellow Edmarc families I know have had; I so wish for a reversal of circumstances for each of them.
We brought Abby back tour home hospital. They agreed with the prognosis and said their best guess was that Abby would live from four to 48 hours. I remember our Edmarc nurses coming to the hospital to help coordinate her care at home. We had numerous IV’s running that would continue to keep her comfy. Abby survived the ambulance trip home on July 15, 2016. I remember sitting at our dining room table picking out a funeral home with Nurse Laurie. My husband even started writing her eulogy. Edmarc nurses came every day along with family and friends who gathered to say goodbye.
As I am writing this today, Abby is here with us!! She is in the other room doing schoolwork. Doctors and nurses do not know why or how is with us, but she is. It has been so many long months since last summer, filled with obstacles and a lot of hard work, but her kidneys are fully functioning, her marrow works properly, she is walking independently…and she is supported by just about 10 medications a day. A huge change from before. Truly a miracle. We are so blessed! Am I scared about Abby’s future? Of course I am terrified. But we can continue to just take it day by day, and I know Edmarc will always be there by our side.
Among our favorite Edmarc memories: Abby screaming through a dressing change while sitting and watching the Super Bowl with Mimi; countless visits over the past two years from Nurse Kim, Santa, Mrs. Claus, and holiday carolers coming to our house; Abby getting her first bike; the wonderful Thanksgiving meals provided; Easter baskets and so much more. For everything beyond medical care that Edmarc has done for us, supporting our family both medically and emotionally – we are forever grateful.
If you are a donor, sponsor or volunteer, thank you very much! Your money and time do great things—it is a life saving gift to us. Fellow Edmarc families of past and present, our hearts go out to you. To the Edmarc staff, thank you from the bottom of our hearts for helping us through Abby’s journey. Your work is that of saints and angels.
Patty, Joe, Abby, Maggie and Emily