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.

Tuesday, August 31, 2010

Not so Happy. Clinic Day.

Mimi woke up this morning very tired, sad, just "blah" it didn't really get any better while we were at the clinic she looked like she might be getting a fever. Her heart rate was fast, which usually indicates a fever coming. Counts came back and her ANC is pretty low. Nightly chemo pill (mercaptopurine) on hold until further notice. Five day steroid (dexamethasone) pulse is still happening starting today. She had blood cultures taken at the clinic just in case we end up admitted for fever. Since todays Spinal Tap is not count dependant she still got it, everything went fine.

We packed up the and came home for lunch. Mimi ate and drank a bit and has been on the couch watching the food network. I am crossing my fingers that ONE we all sleep a home tonight instead of the hospital and TWO when we go for counts on Friday they are well enough to start school on the 7th, they need to be over 500.

Mail came today! Mimi's backpack came in, Iza's came last week. Also some fun school accessories for all three girls from Auntie Sherri and Uncle Joe :) Thank you!

Counts:
WBC - 3.17
Hgb - 12.5
Platelets - 212
Neutrophil - 200

The Happy.

This whole weekend was filled with fun! I have said it before and I will say it again we are making up for last August that we spent in the hospital.

Friday night we got treated to a Rock Cats Baseball game by Griffin's Friends. We took Auntie Mary and Auntie Meghan with us. We ate LOADS of food and every ice cream they had to offer, watched the game and the fireworks afterwards. It was a late night but we all had a blast!

Sunday we were all over the place one of the highlights was a ballet show at the Eric Carle Museum, the girls really enjoyed it. Amherst Ballet presented Hansel and Gretel. We stayed after the show made some watercolor paintings and also went to story time.

The Hungry Caterpillar Bug!

"Bad Girls" photo by Toto

The girls were playing with water balloons outside
and decided to draw faces on them and pretend they were babies. It was pretty funny!









Thursday, August 26, 2010

We HEART Art!

I love everything about art. I always have. Seeing my girls take a true interest in art makes me so happy. Art has always been therapeutic to me. I have also seen the positive impact painting and creating has for Iza and Mimi. They would draw stacks of pictures for each other when Mimi spent a lot of time in the hospital. They draw pictures for anyone that is sad, happy, getting married, having a baby, you name it! Basically if you know Iza and Mimi you have gotten a picture of some sort from them. Magi is not too far behind on that.



Today was the Children's Hospitals 1st Annual Art Show. All the girls got dressed I did four heads of ponies and braids and off we went to the show. Lots of creative artwork was all over the room, the girls ran around looking at them, ate some light snacks and were off running around and giggling with friends from the clinic. It is easier to run around when no one has any IV poles attached to them! It was great to see them all have so much fun. All the little artists were awarded with a certificate and a medal. Mimi donated her artwork to be displayed at the hospital, Iza chose to take hers home. Thank you to everyone who put this together, most of all Betsy from Child Life. We hope there will be many more art shows to come!

click for larger image

"Happy Rainbow Family" by Mimi & "Sunflowers" by Iza

Wednesday, August 25, 2010

Clinic Day.

We went in to check counts to see if Mimi can resume chemo. Counts went up so she is back on 50% of her dose. This was her second drop and according to her protocol she goes back at 50% and it will be gradually increased to a 100% dose.

Next week starts her 3rd cycle of Maintenance which starts with a Spinal Tap.

Counts:
WBC - 2.23
Hgb - 12.1
Platelets - 130
Neutrophil - 850

Tomorrow is an exciting day both Iza and Mimi have entered paintings in the Children's Hospital 1st Annual Art Show. They are going to dress fancy and we will all go to the art show tomorrow night. I am one proud Mommy!

Summer is ending.

The weather is changing, there is a nice chill in the air in the morning. That always reminds me of the bus stop when I was a kid. All the kids are excited for school to start, as are parents. Iza and Mimi will be starting school September 7th! So crazy. We have been filling the days with lots of play and small outings here and there.

This weekend Dan played in a charity soccer tournament and we all spent the day outside cheering his team on. Daddy did not with the "Realllly Giant" Trophy but we had a great day outside seeing friends. Mimi grabbed my camera and took some pictures and I just realized there was not a picture of her from that day.

Iza, the soccer player and Magi striking a pose for Mimi.

Wednesday, August 18, 2010

Busy, Busy and Clinic Day.

We had a jam packed couple of days. Nana and Pops were visiting so the girls got to hang out with them. We celebrated another wedding. Congrats A & R!!! We made our annual summer trip to Roger Williams Park Zoo in RI, and visited with friends near by. We have been keeping busy and Mimi has been keeping up but the last couple of days I have noticed she was easily irritated and quite moody which made me bring out the thermometer more often. Today we had clinic and I wonder if she was acting a bit off because of her counts. Since the ANC is below 500 all chemo pills are on hold until next week when we go in to check counts again.

Counts:
WBC - 1.31
Hgb - 11.5
Platelets - 188
Neutrophil - 410


Roger Williams Park Zoo 2010

One Very Lucky Boy & Six Lovely Little Ladies.

Tuesday, August 10, 2010

A year ago today...

I was in the hospital unable to breathe and unable to stop the from tears coming. I was scared. I remember every detail like it just happened down to every nurse and doctor I spoke with and what Mimi was wearing her heart tee and 3T shorts that matched one of the hearts. I remember crying in the hallway and one of the sweetest nurses came up to me and said "We are going to kick this thing right in the ass!" Over the past year that is what we have been doing. We have all changed, Mimi has become a mature five year old that maybe I would not notice as much if she did not have a twin. Iza has shown more emotions some good and some not so much. Magi has grown alot too, I often feel bad she missed out on mommy time during the first six months of Mimi's treatment but instead of dwelling on it I am trying to make it up to her even if it means watching the Barney Zoo DVD and singing the songs with her, over and over.

All summer I have been dreading August. I am not sure why it was just a strange feeling of anxiety and lots of undefined emotions. Well the day happened and it was good, we did our regular things.

Today, Mimi and Iza won summer reading prizes at the library. Iza picked out a really neat book on Oceans and all it's creatures that came with a stuffed whale. Mimi picked out a Sponge Bob collection (yey, I am rolling my eyes) she read the book on the way home, since I won't read it she said she can read it herself now, goober. Magi was not too happy leaving the library empty handed this time but both girls quickly shared some of their prizes which stopped the possible tantrum in the large echoing library entrance.

Teamwork at Skinner Mountain Park a couple of weekends ago.

Friday, August 6, 2010

Day 3 of Steroids.

Not too bad as far as emotions go but food is very random. I have decided there is no real meal times during "steroid week" for anyone. Mimi just asks for random food at random times. Iza and Magi and all the other little munchkins that happen to be at my house also want random foods. So I go with it. Yesterday I cut up and/or served three apples, 2 cucumbers, everything bagel, a whole cantaloupe, 1/2 gallon of milk, pear, celery, eggs, raisins... I am sure there were other things that I can't recall but all this was between 9:30am and about noon!

On a side note I took Mimi to see our regular pedi to check her foot. She has been walking "funny" on it for over a year now sometimes more than other times but recently she has gotten blisters and tripped on over that foot also. I don't know if it is chemo related issue or just a kid thing but I wanted it looked at. We got a referral of a children's orthopedic so hopefully we will have some answers and/or solutions.

Wednesday, August 4, 2010

Clinic Day.

Mimi got Vincristine, while getting her toes rubbed. Iza came along to clinic and they both got to do some painting crafts with the new child life specialist. They made frames for Nana and Pops who are visiting from Florida this week!

Counts:
WBC - 1.35
Hgb - 11.4
Platelets - 134
Neutrophil - 630

Tuesday, August 3, 2010

Danced ALL night!

Super cute flower girls getting the party started!
Mimi made up for not dancing at the wedding in January. When the DJ started playing songs she did not come off the dance floor until he was putting his equipment away!


We finally got a family pic!
(it only took 500 shots...)

Happy Wedding and Honeymoon M & B, you did it!!!