|Diagnosed: August 17, 2005 Age:
Acute Lymphoblastic Leukemia
Treatments are continuous until: November 2007
Things you should know:
|One child lost is too many,
One child saved...
Can change the World.
Rachel has always been my active child. She has always needed something to
DO. So, in the summer of 2005, when she was 6 years old, I enrolled her in
several park district programs: swimming, tennis, ballet and Irish dance. In the
beginning of the summer, she was in seventh heaven.
By late July, she had developed a cold with a little cough. She started feeling
tired more often, more easily. Her legs hurt after Irish dance, which I didn't think
was so unusual because it was a new class to her. She didn't want to do the
tambourine dance in ballet, usually the highlight of the class. When we went to a
museum, she was angry at us for walking too fast, and kept asking us to slow
down. I carried her on my back to the parking lot at the end of the day. She
started taking naps again, which was something she hadn't done since she was
2 years old. She didn't want to go to the pool, or to the park; she wanted to lay
on the couch and watch videos all day.
Little by little, she became more and more pale. I took her temperature
frequently, but it never rose above 99.2 or 99.4'. On August 17, 2005, I finally
called the nurse at our pediatricians' office. She said, "Moms often have a
second sense about these things. Bring her in. If it's nothing, at least you'll
have peace of mind." So we went to the pediatricians' office.
The pediatrician looked Rachel over, and asked me if I could see how pale she
was. I knew she was pale, and that her coloring had always been fairer than her
sister's. He was concerned over how extremely pale she was. He wrote out a
form for me to take her to the nearby hospital lab for a blood test and a
urinalysis. He said, "It could be mono, it could be a blood virus, let's run
everything and find out." He wrote "STAT" on the top of the orders, and told me
he would call me that afternoon. We went to the lab, had blood drawn, and went
to a local hot dog stand for a late lunch.
At 1:30 pm, the nurse called me. How soon could I get back to the doctor's office
with my husband? She made it clear that they would not talk to me without Steve
present. (Hint #1: Something is big wrong!) I called Steve, and met him at the
doctor's office with the kids in tow. They brought us straight into an exam room,
where 2 doctors came in to speak to us. (Hint #2: something is really big
wrong!) The doctor started talking about a disease that started with the letter L
(he wouldn't use the name in front of the kids, so as not to scare them). He said
that it affected the blood, and that the success rate in treating this disease had
gone up significantly in the last 20 years. Even so, we needed to take Rachel
downtown to Children's Memorial Hospital immediately. He had talked to Dr. W
there, and we were to meet her in the emergency room as quickly as possible.
We drove home long enough to throw a few snacks and toys in a bag, then I
drove Rachel to Children's while Steve took our older daughter to my mom's
house. I was so stunned, and so distraught, I cried the entire way to the
hospital. Rachel made a little note for me that said, "It's ok Mom. I love you." I
still have that note.
We met about 9 different doctors in the emergency room, ranging from residents
to full doctors, ER specialists to oncologists. Every one made me repeat
Rachel's symptoms and medical history, and every one pushed on her abdomen
and felt her neck and under her arms. She had a chest xray. They took more
blood. Finally, we met with 2 Dr. Ws, one an oncologist and one an oncology
fellow. They explained that Rachel most likely had leukemia (finally, the L
word!), but that they would have to perform a bone marrow aspiration and a
spinal tap to be sure. However, Rachel's hemoglobin was only at 3.4. She
would need a blood transfusion or 3 before they could perform either procedure.
We were admitted to the PICU, where Steve finally met up with us.
Rachel was put on oxygen, had 2 IV's put in her arms, and was hooked up to a
pulse/oxygen monitor. She started receiving blood, very slowly at first to protect
her heart. Between the IVs, the oxygen mask and the newness of the hospital
scene, Rachel and I hardly slept that whole night. We read stories, and drew
pictures, and told fantastical stories about how the bunnies were getting into our
tomato plants (parachuting bunnies that wear rocket backpacks and roller
skates). We sang songs, as much as I could. When she did sleep, I cried and
The next day, she was NPO (no food, no drink) until the BMA and LP could be
performed. We waited until 7 pm with a hungry, cranky child before we were
given the option of finally doing the procedures then or feeding her and waiting
until morning to try again. We chose to do it then. To add insult to injury, the
nurse on the oncology floor gave away Rachel's dinner while we were having the
procedures done. She wound up eating part of a disgusting TV dinner.
Finally, the next morning, both Dr. Ws and a second onc fellow met with us. We
finally had a diagnosis. Rachel had pre-B cell acute lymphocytic leukemia. We
learned then that the treatment would take about 2 1/2 years.
Rachel spent 5 days in the hospital, receiving the first doses of chemotherapy
and a total of 5 units of blood. She came home on Monday, August 22, 2005,
and started school with her classmates on Wednesday, August 24. That Friday,
we started the clinic routine that would be part of our lives for the next 2 years.
Rachel is now 8 years old, and in the 3rd grade. She has 2 more months of
treatment to go. She has only been hospitalized once more during treatment, at
a point called Delayed Intensification, for 3 days due to a severe reaction to
chemo. For the most part, Rachel is a normal 8 year old girl, who takes ballet
classes and piano lessons. We have tried to maintain as normal a life as
possible for her over the last 2 years. We hope that we have kicked those nasty
cancer cells for good; she won't be considered "cured" until she has reached 5
years off-treatment with no recurrence of leukemia. That is our goal.
Dino Putt at Give Kids the World
Make-A-Wish Trip - April 2007