Inspiration

This week three years ago, I was training with Team in Training to run my first marathon and I became connected to the cause in a way that will forever be with me. It went something like this.

I knew that Leukemia was the kind of cancer kids can get. That was pretty concerning to me and I thought anything I could do to change that was necessary. Up to this point I hadn't known any children with Leukemia, but knowing it could happen was enough. Joining the team gave me a new perspective. I met many honorees that were all different. Some were children, some were not, and they all had different stories and each one touched me. But over a year since I had first joined the team a few weeks before my first marathon Leukemia touched me in a different way. A child that I knew, and who was part of my life as a healthy two year old became someone with cancer.


On May 7, 2005 Dayssi was diagnosed with leukemia. Six hours earlier she was a healthy happy little girl with what everyone assumed was a sprained ankle. She had Acute Lymphocytic Leukemia (ALL) B-precursor. This is the most common - and most treatable form of the disease in children. She was in the lower risk subgroup (Children 1-10 years of age). In addition, her white cell count at initial diagnosis was 35,000 - below the 50,000 marker for higher risk. Finally, tests on her cerebral spinal fluid (CSF) from a lumbar puncture show no evidence of lymphoblasts (leukemia cells) in her spinal cord fluid - another good indicator. So, in sum, the prognosis was very good. 80% of patients with her profile are-- in effect-cured.

The bad news is that the treatment is both lengthy and unpleasant. She underwent 1 month of induction (intensive chemotherapy) designed to knock out the diseased cells, 5 additional months of intensification, designed to consolidate remission achieved during induction, and 2 years of maintenance, designed to ensure the elimination of any traces of the leukemia cells.

To start things off her treatment on day 1 Dayssi had a bone marrow aspiration and biopsy. This reconfirmed the diagnosis and provided samples necessary for identifying the subtype of leukemia. On day 2 she had a spinal tap - or lumbar puncture (LP) to obtain fluid to test for the presence of the cancer cells in the CSF and to give her the initial dose of chemotherapy (intrathecal) just in case. On day 3 and 4 chemo continued with a variety of medications. On day 5 she had her central line (a PICC) inserted to provide easier access for blood draws and administration of her intravenous medications.

In July of 06 Dayssi had her first day of maintenance. This included a push of vincristine (this is the drug that makes her jaw hurt, and her tummy hurt, for a few days after getting it, and it also makes her walk and run kind of funny). After returning home, she started a five-day course of steroids (dexamethasone, the original and still worst "yucky" medicine), plus the minty Zantac that goes with it (another contender for most yucky), and a new oral methotrexate, which Dayssi will take one night per week for the next two years. The methotrexate dose consists of 5 small pills, and also requires an empty stomach. So, after returning from the hospital, Dayssi had a drink with extra poo poo medicine (to stave off another undesirable effect of vincristine), dinner (Tacos!), some yogurt with steroids (dexamethasone), Zantac and grenadine. An hour later she had the 5 methotrexate pills, which she took by carefully placing each inside its own raspberry, popping into her mouth, chewing and, on occasion, swallowing without even feeling the pill! Piece of cake. An hour later, she had her regular 6MP pill, which she'll continue to take every night at bedtime for the next 2 years. This is the one that makes her throw up every morning but she doesn't know that, and doesn't mind taking it.

Throughout this whole process there were many days when Dayssi was not healthy enough to come to school, when her counts were not high enough to fight of the germs that most two and three year olds deal with on a daily basis, but there were even more days when Dayssi showed up and smiled. Each day I looked at that smile I felt inspired. She is so brave and so small, and she deals with things I hope I never have to. So I work hard and raise money and hope to be a part of changes that make it so no one ever will.



If you want to know more about Dayssi you can read her blog, "Saving Miss Dayssi" (faithfully updated by her mom, Deb) at http://dayssi.blogspot.com.

Finally a quote from Deb. "What right do I have, I reasoned, to refuse to do something that scares me, when I ask my 2 1/2 year old every week to come with me to the hospital and cooperate while strangers (now mostly friends) poke and prod her, give her poisons, make her wear masks and breathe sleepy air, and draw blood from her chest while she is watching?" I think she means I need to "Get in the water!," even if there is a seal, climb Tunitas Creek, even if it is the third major climb of the day, do a triple brick, even when a single brick sounds scary enough, and be an Ironman again, even if I never thought I could.

The great news is that three years later Dayssi is in remission and off chemotherapy. She had her last chemo treatment July 19, 2008. This was the first time since she was 2 years old that she went off chemo. Her checkups have been so great that they will no longer be doing routine lumbar punctures, and will reserve those for if there are signs that something is going wrong.

Dayssi is in Kindergarten now. She also loves playing soccer and doing Hap Ki Do. She just earned an orange belt this February. :)