BIG day tomorrow!

Mimi's PORT is coming out!

She has known that once she no longer needs chemo the port will come out. She also always said she wanted it out before her 7th birthday. We met with the pediatric surgeon and although he wanted to wait until after her birthday, so she won't be sore for her birthday, she insisted she wanted it before.

Tomorrow, December 1st, Mimi is scheduled in the operating room at 11:30am. She will go under general anesthesia and the surgeon will try to use the same incision they used to insert the port, for minimal scars. The surgery itself should not take more than an hour. Mimi is hoping to keep her port read below to find out why...

"My Port" by Mimi, almost 7

"What is a SuperSib" by Iza

We like to Dance, UDance?

November 20th we attended the UMass UDance a dance marathon fundraiser to benefit Children's Miracle Network (for Baystate Children's Hospital). Last year the girls had so much fun and they were very excited to go again this year. Once they heard the music they were out on the dance floor along with the many college students who were there supporting Children's Miracle Network. The girls got their faces painted, balloon princesses made, ate a whole lot of popcorn but most of all Danced with their new found friends at UMass. All three of them begged to stay "at college" and wanted to do "college homework" I hope that sticks with them until they go!




Thank you UMass students for a great fundraiser and letting us be a part of it and have so much fun doing it!

Iza Mimi and Magi in front of all the students dancing to Wii Just Dance 3.

There is Art in our Hearts.

I truly believe Art was a big tool in for all of us through the last two years, especially for Iza and Mimi. It is a way for them to escape, express, and communicate their feelings. At every hospital stay, clinic visit there was some sort of art being created. Child Life was sure to keep Mimi, along with Iza and Magi when they were visiting, busy with all sorts of activities but I would say the number one request was paint. For the second year in the row the girls participated in the Annual Baystate Children's Hospital Art Show. Betsy (Child Life Specialist) was not kidding when she told us this year it would be bigger and better! It was red carpet treatment, music, lots of smiling kids, amazing art work by artists of various ages. The girls had a great time making some more art while at the show and playing with their hospital friends. We always love to see the hospital staff while NOT inpatient.

Mimi with her artwork "Mimi Healthy" a self portrait in which she is holding a large glass of milk and has fancy earrings on.

Iza's piece titles "Super Sib Iza" It is a picture of her with a mask and a SuperSib cape on, and every super hero needs a palm tree!

The girls with Betsy.

Thank you for such a great Art Show for all the artists, and for healing with art every day.

First OFF Treatment Clinic Visit.

We had so many lasts but today was a first post treatment visit. Just a quick finger prick, some chatting, hugs and smiles from our favorite clinic friends while we waited for counts to come back. I mentioned Mimi's day of nausea last Tuesday although it was all better the following day. It might have been just something random that resolved on its own.

After clinic the girls ran around with some friends and enjoyed the really nice weather at a park. Alot of parks around here are closed due to all the trees that are down after the Halloween Snowstorm. Mimi was complaining of a headache while playing, it must have been pretty bad because when we got home she skipped her favorite dinner and fell asleep before 6pm, I am really hoping she is just tired and this is not a start of something...

Today's Counts:
WBC 2.34
HGB 11.0
Platelets 187
Neutrophils 1250

Officially OFF Treatment.

2 years, 2 months, 26 days

over 40 days inpatient

over 75 Clinic visits

Bone Marrow biopsies and aspirations

Lumbar Punctures

Blood and Platelet transfusions

Numerous Xrays

Multiple CT scans

MRIs

Just one Nuclear Bone Scan

One portacath

A very long List of Medications

She did it! We did it! I remember over two years ago looking at 4 and a half year old Mimi laying in a huge hospital bed as she was sleeping and crying thinking that she will have to fight until she is almost 7! It seemed like a life time away. There were definitely scary days that felt like the clock never moved and daylight was not coming fast enough. We enjoyed every good day, and made a bad day better. The second counts were just over the "good enough" mark we were out the door doing something and making every moment count. We are done with treatment but we are a part of a club, a club we didn't ask to join. It changed our lives not for good or bad, just changed.

Tonight I was putting the girls to bed and Mimi asked

"Is tonight is really the last night I will give her a pill?"

I said "Yes."

"So that means tomorrow I can have a LARGE glass of milk RIGHT before I go to bed?!"

She has been unable to have milk at least 2-3 hours before she has her nightly chemo and that has been the hardest thing for her. Not the giant needles in her chest or the crazy steroid days... go figure! As I was walking out the room Iza looked at me with sad eyes and said "Does that mean tonight I am done being a SuperSib?" I assured her She will ALWAYS be a SuperSib! Everyone went to bed happy.

Q&A

Is Mimi's cancer gone? Short answer YES, It has been gone and the last two years we have been doing a lot to keep it from coming back! Mimi went in to remission, meaning there was no longer evidence of cancer cells in her body, soon after we started treatment. To keep it that way she continued with a long maintenance treatment to keep the cancer from returning. This included, daily chemo at home, monthly IV chemo, and chemo administered into her spinal fluid to decrease the chance that leukemia invades her central nervous system.

What now? Starting November 9th Mimi will be going for monthly blood draws to make sure her blood counts are what they should be and that there is no evidence of cancer cells. Later on they will be bi-monthly until eventually once a year for the rest of her life. Along with other routine check ups such as Echo cardiograms, to check her her heart for possible damage caused by chemo.

Sometime soon we will also have a date to remove her portacath which will be another huge milestone!

Also she will be closely watched for any late effects due to the intensive chemotherapy she received over the last two years.

Thank you for being part of our little army whether it was for 5 minutes of the last 2 years, 2 months, 26 days or the whole ride. Thank you for all the shoulders I got to cry on, for taking the Iza and Magi for fun days restoring "normal", for the coffee and tea deliveries to the hospital, for dropping what you were doing because it was a good count day and friends needed to play, for understanding things needed to get cancelled due to low counts, for understanding and for trying to understand... I can go on forever. I am blessed to have met so many people and I hope to continue keeping our little army going as we keep Leukemia AWAY...