Out of 3 daughters Mimi is our middle child, older sister Iza by 3 minutes and a younger sister Magi by 3 years. Mimi was diagnosed with Acute Lymphoblastic Leukemia (ALL) on August 12, 2009. After 2 years, 2 months and 26 days on November 6th, 2011 she took her last chemo pill and is considered OFF Treatment! This is our story of our journey through childhood cancer.

Wednesday, March 30, 2011

Clinic Day.

A scheduled clinic day. Counts are good, not as high as last time which is good, we don't want them to bee to high. I voiced my concern about Mimi still not feeling 100%, still having headaches and random pains but we will continue to just watch her. I think her pains have been less frequent from two weeks ago. Hopefully this was just a side effect from Dapsone. Today was one of the first super nice days the girls ran around outside loving the weather, although mother nature has a trick up her sleeve this Friday we are suppose to get a snow storm! Hopefully it is just an April Fools Joke.
Happy Spring!

Saturday, March 26, 2011

Unscheduled Clinic Visit

Since about Sunday Mimi has not been feeling great. Headaches, random pains all over, cough, no appetite, trouble sleeping, pale... all things that have been keeping me up at night with an uneasy feeling. She was up most of Thursday night unable to sleep and was so exhausted in the morning that she asked if she can just rest and not go to school. She slept in and we went to clinic to get checked out. While she was getting ready in the bathroom she called me in and very calmly said "I think my hair might be falling out again" clumps of hair came out but she wasn't bothered my it at all. Kids amaze me daily.

The thought right now is that the newly added antibiotic caused all these issues. I think she got almost every side effect listed. Counts came back, higher than I ever remember, except her red count (Hgb) which went down due to the antibiotic. I have not heard back about her chest x-ray yet. Right now Dapsone has been withdrawn and she will start a monthly inhaled Pentamidine.

Magi went with us to clinic and made out like a bandit with stickers from the x-ray tech who was really nice and let the girls check out the "bones inside picture."

WBC - 6.7
Hgb - 10.5
Platelets - 254
Neutrophil - 5300

Tuesday, March 22, 2011


A local radio station WMAS 94.7 hosted the 10th annual Radiothon to benefit Children's Miracle Network, which our hospital is a part of. Many families were asked to share their stories about their experiences with the Children's Hospital. Some staff members also told inspirational stories. It was hard not to get emotional while listening to the radio station over the three days.

The girls were very excited to be on the radio and had all sorts of things they wanted to say until we were live on air... they were nodding their heads and smiling, not something you can see on the radio. The local news station was also interviewing patients and somehow Mimi and I got on TV. You can view the news clip.

The three day radiothon was a success! 201 thousand dollars was raised and all of it will stay locally.

Wednesday, March 16, 2011

Clinic Day 3-16-11

Mimi was not feeling great in the morning so I had her stay home until it was time to go clinic. She has been nauseous and constipated for the last three days, Zofran and Maalox seemed to take care of those issues. I think it is a combination of the time change, rainy weather and half of their class being sick.

Today was Vincristine day so her port was accessed, blood drawn and she got checked out by the Onc. All looks good. Last week her blood was sent out to check if she has a 6mp (Mercaptopurine) sensitivity, she has been on about 47% dose for a while now and her counts took a while to come up. The results came back normal. So next step is to take away Bactrim (weekend antibiotic) and use a daily antibiotic.

Today's Counts:
WBC - 5.8
Hgb - 11.6
Platelets - 214
Neutrophil - 4200

Clinic Day 3-1-11

Procedure Day for intrathecal chemotherapy (methotrexate). Everything went as scheduled, Mimi even got a foot massage right before we went down. She woke up shortly after the procedure, asked for a munchkin and off home we went. It is weird how routine these things have become, I still get knots in my stomach before she goes under, but it doesn't scare her she knows what the plan is and just goes with it.

Her counts were great ANC was 2200.

Oh and one more BIG thing. Mimi asked when will she be done taking chemo and the official date right now is November 6th, 2011. Seems surreal.

Saturday, March 12, 2011

Winter Wonderland at Camp Sunshine

On Tuesday (2/22) we made a quick trip to clinic for counts which were great so with giant smiles on every one's faces we filled the car up and off on our adventure we went. The whole time the girls thought we were going to visit Auntie Tracy for a couple of days. They were getting a bit suspicious asking why we need our pillows, towels and a bunch of outfits. Mimi and Iza were very confused as to why there were bathing suits packed, I was able to somehow make answers up. Wednesday we woke up ate and back in the car we went I told the girls to take a long nap, when they woke up Mimi read a sign that said we were in Maine. A couple miles later she saw a sign that said "CAMP SUNSHINE" with an arrow to turn left. All three were screaming "Turn LEFT Turn Left!!! Can we go there??? Can We stay!!! Pleaseeee" To which Tracy and I replied "Sure!"

Three Very Happy Campers

It was so great to be back! The girls ran around looking for counselors from the summer and were overjoyed to find some of their favorite people. I kept another secret, one of Mimi's friends from clinic was coming to camp as well the girls were all happy to see each other.

The five days were filled with winter activities; ice skating, snow shoeing, horse drawn slay rides, walks in the snow, sledding. Aside from outside fun the girls enjoyed games, arts and crafts and the indoor pool, Iza and Mimi got to go daily and loved it! The talent show was such a hit! Iza sang Baby by Justin Bieber she brought her J.B. pillow up on the stage with her. Mimi did three cart wheels. While Magi went right up and sang Three Little Monkeys, no fear of the audience at all. We were all equally tired at the end of each night.
The Gang

While the kids were off doing their activities with some wonderful counselors, adults got fun time also, as well as some time to be able to meet and talk to other parents who understand, relate and share their stories.
We had such an amazing summer session last year that I wondered how the winter session will be and it was so wonderful. It truly was a Winter Wonderland. We got about 16 inches of snow during one of the days, it was beautiful to just sit at the fire place in the dining hall and look out the window as the snowflakes were dancing.
Gorgeous View of frozen Sebago Lake.

Once Again Thank You Camp Sunshine and everyone who makes it possible we can't wait to go back!!!

we are counting down the days until March 18th when we go back for a special Twin with Cancer weekend.