Welcome Friends!
Ila R. ^i^
New York
Biography
Ila was born by c-section on February 4, 2005. I was having alot of
discomfort and was given medication that sort of put me into another world and I
didn't know what was going on in the room around me. At one point I saw my
husband standing there and he turned to me and said something's wrong. When I
woke up in recovery the nurse came to me and told me that Ila have stopped
breathing twice and needed to be resuscitated and that the doctor was with her
in the nursery. I sent her off to find out what was happening. I was a wreck, I
hadn't even seen my new baby girl yet let alone held her in my arms. When the
nurse came back she told me they just had to resuscitate her a third time. My
heart dropped and I told her I needed to see her. They told me the doctor was
going to transfer Ila to the NICU at another hospital half an hour away. They
couldn't bring her to me and my bed could not get to where she was. Only 45
minutes after major surgery I stood up and got out of b
ed to sit in a rolling chair to go to the nursery where Ila was. I had 20
minutes with her. All I could do was put my hand through the hole in the side of
the incubator and hold her little fingers in mine. That was it for 20 minutes.
Then they came and took her away and I didn't know if I'd ever see her again. I
sat in my hospital for 5 days and she got better in the NICU. On that 5th day I
got released ad finally went to see her and held her for the first time. She
came home on day 7 and our family was complete.
She was a wonderful baby. The following summer she started walking at 15 months
which worried me a little as my other two walked at 11 months. I figured it
might be because the other two got everything for her so she didn't need to
walk. So I shrugged it off. I also noticed she had a very big baby belly. Over
the summer though I started thinking that it seemed alot bigger than Howie and
Monica's were at that age. But again, it was just a thought in the back of my
head. In mid August that summer she developed a low grade fever and got real
cranky and I saw she had teeth coming in. After 4 days I took her in to get
checked to be safe and the doctor thought it was most likely teething but did a
urine culture to be safe and it came back normal. Over the next week her
behavior got worse even though the fever went away. She got crankier and was
eating and drinking less. She would only let me hold her a certain way and she
would wake up screaming at night, tossing and turning. It wa
s the weekend by now and we decided to take her to the doctor first thing
Monday morning and demand to have some blood work done. Something wasn't right.
That Sunday morning a mysterious black eye appeared and that afternoon her temp
was 103.7 so I called the doctor. I decided to not take her to the ER after her
temp came down with tylenol and I took her in the next morning. The doctor
couldn't get a good exam in because Ila wouldn't stop crying but he thought her
tummy looked distended and he wanted more tests done. We went for blood work and
and abdominal ultrasound. I had a bad feeling during the ultrasound that
something wasn't right and by the time I got home, there were 10 messages on my
machine to call the doctor. I did and was told that she had a mass on her
kidney. My world fell apart in that instant.
By that night ila was admitted to the local childrens hospital and was diagnosed
with Stage IV Neuroblastoma the next morning. I was devastated. My baby girl had
cancer. Over the next 4 years she went through 23 rounds of chemo, 28 doses of
radiation, 6 rounds of antibody treatments, 3 surgeries, countless
hospitalizations, infections, blood transfusions and was scanned every 3 month
to check the status of her cancer. She was declared cancer free 17 months into
treatment even though she went through 4 years of treatment. Neuroblastoma is
very aggressive and has a 50% relapse rate which she experienced this year.
After 3 years and 4 months cancer free she relapsed on May 5, 2011 with a
localized tumor in her abdomen. She has had 3 more rounds of chemo after having
the tumor surgically removed. She had 14 doses of radiation and one round of
antibody. She is now waiting for her levels to come down in order to get more
antibody treatment. She is dealing with a harsh change in app
etite which has left her with a 30% loss in her total body weight. She is
fighting to overcome this issue so she can put some weight back on. She is in
school right now while we wait for the next treatment. This is where she is
right now. Enjoying life the best she can as a 1st grader.
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Birth Date - February 4, 2005
Main Diagnosis - Stage IV Neuroblastoma
THEME: Butterflies....fav colors Pink & Blue
