Chiara D. - Quilt Finished in 2005

Born: July 15, 2002

Illness: Juvenile Myelomonocytic Leukemia

A Special Thank You From Chiara's Family!

Written April 23, 2005

You ladies did such a wonderful, beautiful job!  Chiara and Giulia were extremely happy when they saw it, jumping up and down and giggling.  They wanted us to read them the names on every single block and kept laughing with joy with every explanation.  They also immediately wanted to spread it out on their bed and lay down on it, repeating constantly, "Mommy, it's so soft!," and taking turns snuggling up to their new pillow.  It's really gorgeous, more of a work of art than just a quilt.  We can see so much love in this quilt and we're thinking of hanging it on the wall so it lasts longer and so they can enjoy it every day.  Thank you all from the bottom of our hearts.  You really made for our family more than just a piece of cloth -- you made us one of the nicest, most positive memories we'll have of this period in our lives.

Love,

Mari, Fred, Giulia, and Chiara D.

Chiara D.'s Story

written by mom Mari

Chiara was born in San Diego, CA, on July 15th, 2002. When Fred and I were leaving the house after I went into labor, Federica, Chiara’s older sister, then 15, was jumping up and down, knowing that her baby sister was going to be born with her same birthday.

Even though Chiara was pretty “healthy,” she gave us many different health concerns that always seemed to turn out well. When she was 15 days old, her umbilicus didn’t heal after her stump fell off and we risked surgery to correct a possible defect. The problem, luckily, took care of itself. At about age one month and a half, she was covered all over with what they diagnosed as baby acne, and it took her a long time to get over that. We also spent a night in the emergency room with her when she contracted croup. But steroids helped her get over that quickly.

It was starting to seem to us that we might have just been overly nervous parents because these were relatively short-lived scares. So when I noticed that her belly seemed to be enlarged and some bumps (that later I knew been enlarged lymph nodes) appeared behind her ears and on her neck, I held back from rushing to the emergency room. I instead was planning to ask her doctor about them during our next well being appointment until I noticed some petechiae (tiny purple dots on her arm) that pushed me to schedule an immediate appointment. The doctor ordered some blood work and called us back at night to tell us we could exclude some serious blood illness; he still, however, wanted us to go to the clinic the next day for further tests to see why she had low platelets.

The next day we saw another doctor who looked at the blood work and touched her belly. From his expression, I knew immediately that something was wrong. He didn’t want to tell us at first and said that he needed to consult a hematologist. But after I insisted, he told us that she could have either a viral infection or leukemia. After he said that, there was a long noisy silence in the room. He asked us to tell him if someone was going to pass out because he was not feeling well himself. He had had a daughter born a few days after Chiara and could sympathize.

We were hospitalized right away for a bone marrow biopsy and a skin biopsy. When the bone marrow biopsy came out negative for ALL (Acute Lymphocytic Leukemia), the whole ward celebrated the good news with us.

Chiara then underwent many tests to find out what kind of infection she supposedly had, but they all came back negative. Her skin biopsy was not clear but it came out negative for Histiocytosis, another possible illness. The doctors were a little confused. So we decided to ask for a second opinion at Children’s Hospital but the doctor there focused on Histiocytosis as well. Finally, our doctor discussed Chiara’s case at a hematologist convention where a researcher suggested that he test Chiara for JMML (Juvenile Myelomonocytic Leukemia). Almost a month later, on the 9th of January 2001, Chiara was diagnosed with JMML.

JMML is a rare form of leukemia (about 2% of all childhood leukemias) that doesn’t respond well to chemo or radiation and for which there is no certain cure yet. We are always in contact with one of the doctors studying this disease and possible therapies; he suggested that we wait to go into therapy because Chiara’s blood counts were stable and not too extreme. We learned that Chiara’s only hope was a bone marrow transplant following a long and hard therapy made of many rounds of chemotherapy and radiation.

We waited two long years to start treatment, partly because of the doctor’s suggestions and partly because it took us almost one year to find her a match – no one in our family matches her. We finally found a 5 out of 6 match for her – that means not a perfect match. During this wait she had to be continuously monitored in fear that the cancer would get out of control.

We enrolled her in a protocol (a study) where an experimental drug called FTI is tested, and as I write this she is just finishing the second of two one-month cycles of it. After one week of rest she will start soon two rounds of chemotherapy before undergoing the conditioning regimen that will bring her to transplant.

Chiara is the joy of my life. I thank God every second for having her in my life. Our bond is stronger than any other in my life and even though I am aware of what is waiting in front of us, I wouldn’t want to be in any other place. I wouldn’t want to be in another family. And most of all, I wouldn’t want to be anyone other than Chiara’s mom.

Written by Chiara's mom Mari in November 2004