My name is Ari Tamir, my wife’s name is Sharon.
We have two daughters, Ariel 3 and Hadar who is just 10 months old.

In January 2007 I took Hadar to a new pediatrician. She was 7 months old at the time.  The checkup was going fine until the doctor noticed that Hadar’s liver and spleen were enlarged. He sent us to the near-by hospital for a blood test.  Once we got home, I put Hadar down for a nap and headed down to the supermarket. On my way back home, my cell phone rang and it was the doctor. He received the results from the hospital and told me that Hadar’s white cell count was 60,000. Normally it should be 5,000-10,000.  He then said the word “Cancer” and told me that he had set up an appointment for us at Children Hospital Los Angeles for the next morning. 
This conversation changed our whole life.

The following morning, on January 15, 2007, Hadar was admitted to the hospital.  After an endless  week of  countless blood tests, x-rays and a bone marrow biopsy Hadar was diagnosed with JMML.

 Juvenile Myelomonocytic Leukemia (JMML) is a rare form of leukemia which affects young children, generally under the age of 5. JMML affects around 4 in every million children and the average age at diagnosis is around 2 years old. Funding available for medical research and information support is limited and rare diseases are often seen as lower priority because they directly benefit fewer people. There is still much unknown about JMML and there is no internationally accepted protocol for treatment.  Without treatment, the survival of children with JMML is approximately 5%, After Chemotherapy and bone marrow transplant
the survival rate is approximately 20%.

We have been at the hospital since mid January by Hadar’s bedside, day and night. On April 6, 2007, following three cycles of heavy chemotherapy, Hadar received a bone marrow transplant. We pray to God that everything goes well. As the sole provider for the household, I had to return to work in order to keep my job and our family’s health insurance.  We live one hour away from the hospital and had to rent a room at the Ronald McDonald House near the hospital for my wife, since we are not allowed to sleep in Hadar’s hospital room during the night. We expect Hadar to remain in the hospital for the next two months and then come back home.  She will need to be in strict quarantine for at least a year.  She will have weekly blood tests to determine her progress, and to make sure there is no graft vs. host disease, (when the new bone marrow fails). This disease has a lot of unknown complication. I will have to replace windows and floors in our home in preparation for Hadar’s return. Hadar will have to be in strict isolation, anything that may hold or carry any type of germ needs to be eliminated from her environment.  Any type of infection could be deadly.

Our Ariel

Ariel, our 3 year old daughter is Autistic, and requires special care.  Therefore Ariel and I moved in with my parents. A nanny helps my parents take care of Ariel during the day, and I take over when I come back from work.  When I go to the hospital I wait until Ariel falls asleep and only then Iam able to drive to the hospital. I drive to the hospital around 8:00pm and come back around 3:00am.  Although my parents are retired, they offered to pay for the nanny. It is hard for them, but unfortunately, there is no other choice.  I am not sure how much longer they can do it. 

Updates: August 1, 2007
We are now 4 months after transplant.  Hadar is doing well, however she is unable to keep food down, and remains in the hospital.  The majority of her food and medications comes through IV.  She will not be able to return home until she is able to eat normally and able to take all of her medications by month.  The doctors tell us it will just take time, and we can expect her to be in the hospital for at least the next month or two.  Hadar is now 14 months old.    She is able to sit, however does not crawl, stand or walk.  We began physical and occupational therapy and plan to continue the therapy when we come back home.  Hadar has been moved to a less strict room in the hospital and we are now at Hadar’s bedside 24/7.  My wife is with Hadar during the week, and I take over during the weekend in order to give Sharon a break and a little bit of time with Ariel.  Hopefully we can all be home soon.

Our family has a long road ahead of us and I don’t know what other obstacles will come along the way.  I don’t feel comfortable asking for financial support; however the Talbert Family Foundation is a wonderful way for those who want to help whether it is anonymously or not. 
We thank all of you for your help, support and prayers.