Juvenile Myelomonocytic Leukemia
One morning, in November of 2006, Teagan (3.5 years old) woke up complaining that the bottoms of her feet were hurting. I took one look and I gasped. Both soles were lumpy, bruised and tender. I took her to the pediatrician, and to my surprise, the pediatrician didn’t seem too concerned at the bruising. She even went on to say that at this age kids are pretty active and that bumps and bruises are just part of this stage. I told her that I didn’t think that was the case with Teagan because she had been sick with a cold and her energy level had been pretty low. I will never forget what she said after “Well, it is not leukemia if that’s what you think”. I assure you that the word “Leukemia” never entered my mind. After a couple other questions and getting no where, I then insisted to figure out what it was. A very reluctant pediatrician finally gave me an order for a blood test. The next day my husband took Teagan for the blood test. It was the next morning, Saturday November 11th that we received a phone call from a very apologetic pediatrician. She said that Teagan showed an elevated white cell count and that we should immediately go to Stanford ER where they were expecting us. After that moment, life as we knew it was no longer the same.
After eight long hours in the ER, Teagan was admitted to Lucile Packard Children’s Hospital (LPCH), in Palo Alto, CA. She had a high white blood cell count, bruising, and an enlarged Spleen and Liver, all of which are typical signs of leukemia. But what kind? Ten days later, after countless blood tests, x-rays and a bone marrow biopsy Teagan was diagnosed with Juvenile Myelomonocytic Leukemia (JMML).
JMML is a virulent type of blood cancer that accounts for 1% of all childhood leukemia’s. The only treatment resulting in a cure for JMML is a Bone Marrow Transplant (BMT), with about a 50% survival rate. Risk of relapsing after a transplant is about 50%.
Teagan underwent a BMT at LPCH in May 2007 and endured many complications, two of them being life threatening, and spent a total of 7 months in the hospital. In November 2007, while still hospitalized, doctors informed us that her transplant had failed and the Leukemia was back. Teagan was also dealing with her liver and kidneys functioning at 50% of normal due to the preconditioning chemotherapy in preparation for her BMT, as well as stage II Graft vs. Host disease of her GI tract, a common complication following a BMT. At this point we had very few treatment options all of which she was not likely to survive. It was a difficult decision but we chose quality of life for Teagan vs. putting her through additional treatments that she was unlikely to pull through.
We were discharged in December of 2007 with arranged home nursing/hospice care and biweekly transfusion at LPCH. In March of 2008, her leukemic cells began to proliferate at an alarming rate and doctors told us that we would not have much more time with Teagan. She was then introduced to a new oral drug that amazingly dropped her leukemic cells within days and she remained stable for the rest of the Spring and early Summer. We began to see Teagan’s decline by the end of the Summer when her cells began to steadily climb once again, but unfortunately this time the drug that we introduced back in March was not making a difference.
In the midst of all these changes in her body, Teagan reached a very important milestone, starting Kindergarten. Teagan had the wonderful opportunity to attend for two weeks, as it was all her little body could endure. Teagan passed away on the afternoon of September 19, 2008. She was and still is our inspiration for all that we do and feel in this world. A beautiful child that taught all she came into contact with to truly live and love. We love you and we miss you Teagan.