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.

Saturday, September 26, 2009


Poor Mimi had her first case of nausea for most of Friday.

Everytime an alcohol wipe was near her (they use it to clean off her "tubie" to insert her fluids or meds), everytime anyone came in with freshly washed hands in antibacterial soap, and to kicker was the "sleepy medicine" going into her port. She always said she can taste it in her mouth right before she falls asleep but this time it made her vomit. (sorry for TMI!)

Her Spinal Tap went fine and it was pretty quick so we were home by noon. Some people asked why Mimi keeps getting Spinal Taps.
Here is why:
Intrathecal (Spinal Tap) chemotherapy, methotrexate, is also given into the spinal fluid for at least 4 doses, each separated by a week. This chemotherapy helps kill any lymphoma cells in the brain or spinal cord.
I found this site to be neat (Mimi likes to see why she gets things done) http://spinaltap.starlightprograms.org/003.swf

Thursday, September 24, 2009

We are home.

We got the okay to leave this morning and were home around lunchtime. Mimi did not have any fevers at all since Tuesday night and all her counts stayed pretty good.

Tomorrow is another Spinal Tap day, that she is not happy about, but hopefully Friday night movie night can cheer her up.

Wednesday, September 23, 2009

We spent the night at the Hospital...

Boo. Mimi had a slight fever (100.6, the protocol is to call as soon it is over 100.3) around lunchtime yesterday (Tuesday) I called the Clinic and they told me to bring her right in to the hospital.
She feels great and her blood work looks awesome but since she had a fever last night while she was here they will probably keep her here until tomorrow morning. She is watching movies and coloring up a storm, I am here with her coloring as well. Oh and she is determined to write Emilia in cursive right now she is able to do Mimi.

The biggest news of all her neutrophil count is "normal" is that she is able to have fruit - Real fruit! She has chosen an apple. I'll let you know how it was...
And it was YUMMMMO! She had two!

Saturday, September 19, 2009

Friday's Happenings (Updated)

This Friday went much smoother even with a major delay due to a malfunction of some oxygen machines... something you always want to hear that the oxygen "machine" is not working properly. We got to clinic for 10am but Mimi did not go into the procedure room for her Spinal Tap until around 1pm! She did awesome though she got lots of art done, played some video games and had some visitors even Sarah who talks with her hands and talks to Aladdin! ;)

She will be going for Spinal Taps every Friday for the next 3 weeks and started a new pill daily. I will update with the exact study she is on when I get back to the computer. MagiBoo just got into soap...

Title of the project/research study AALL0331
Standard Risk B-prosecutor ALL
Part II - Post Induction Intensification
She was chosen randomized into the standard treatment arm (SS-IV) which will last 4 weeks.

Mercaptopurine (daily pill for 28 days)
Vincristine (IV push one time on day 1)
Methotrexate (intrathecal administration, spinal tap days 1, 8 and 15)
She is also getting her antibiotic three times a week two times a day.

Thursday, September 17, 2009

Bring a buddy.

We had to go to clinic today for blood counts to see if Mimi is good to go for tomorrow's Spinal Tab. Iza got to go to clinic today also, they were both VERY happy to be there and Mimi did super today since her buddy was with her.

Tomorrow we will get the road map for the next few months. Mimi will also be getting another spinal tap tomorrow. She is not too happy since Iza can't come with her and also because she is getting the "sleepy medicine" that tastes like the poison apple... (I am not sure when she had one of those or if she had a talk with Snow White) Even though she gets the meds through her port kids get a taste in their mouth right before they go under and she remembers it everytime. She will be waking up to a chocolate chip cookie from Jess :)

Sunday, September 13, 2009

Breathing is good.

My heart did the pounding thing again as I took Iza to the pedi on Saturday morning, she had a strange "rash", normally I would not even call the pedi but now I question everything... The pedi called Mimi's Onc. since she did not want to send me home without knowing what this rash was.

We were sent to the hospital for a CBC.

This whole time I tried to just breathe. This was around 10 am. Right after noon I got a call from the pediatrician "Iza's blood is fine" I cried.

Since Mimi is off the steroids for a bit and her counts are pretty good we decided to spend the day in a park with some friends, saw some monkeys, bears, oh MY!, eat ice cream, jump in a bounce house, have a boat ride, eat some more ice cream and my little monkeys fell asleep while chattering with their Barbie night lights. Today felt normal...

Saturday, September 12, 2009

Blood counts and stuff.

We are still without internet at the new house so I am just now updating.

Yesterday was clinic day. Mimi did not have a good morning over there, she cried while she got accessed she said it hurt alot, she was starving, it was raining... The only people that got a smile out of her were her Dr. (who she LOVES!) and the lady who rubs her feet (massage therapist who comes into the clinic). She had a Spinal Tab and another Bone Marrow. We should have results early next week. The procedure went well and after waking up from her "sleepy medicine" she ate her Sun Chips and Butterscotch Oatmeal Cookies all the way from Nana and Pops from Florida! She thought it was very cool to get cookies in the mail.

Blood Counts from Friday:
WBC - 14.6
Hgb - 11.7
Hct - 33.1
Platlets - 220

Tuesday, September 8, 2009

Mail FROM Mimi

I called this blog MAIL FOR MIMI because of a simple request that Mimi had while at the hospital "Can I get mail here Mommy?" I mentioned it to a couple of amazing people and the word was spread - Mimi wanted Mail. The mail came and is still coming.

Now Mimi wants to write back.

We have gone through three sets of watercolor paints. Painting, drawing and coloring has become Mimi's therapy. She sets her self up on our new island right in the center of it all and creates. She has decided to respond to ALL the mail she has gotten so we are going down the list. Daddy has bought us stamps, although I think we might be sending him again soon. So we are creating art and stuffing envelopes.

Saturday, September 5, 2009

Silly Saturday.

So Steroids are suppose to make kids moody. I am still scared of the "bad" moods, although so far Mimi keeps having giggle fits. Along with her partner in crime Iza they say one word and laugh about it for 20 minutes or more. If you are near by you can't help but laugh along with them.

Today's word of the day was skunk and monkey. I am hoping this continues...

Another mood change she has shown recently is ignoring people and pretending she is shy, this is a VERY odd thing for any of our girls since shy is something they never did. The shy thing only lasts for a bit and them she starts with the giggles. The same giggle she had when she was tiny.

Friday, September 4, 2009

Friday is Clinic Day.

And today was a good day! Plus a bonus : We were driving by a tag sale and bought a M&D Puppet show theather with puppets for $5! All three girls were super psyched.

Today was a first day that Mimi did not have to be fasting before clinic, so she was quite happy to get there with an egg & cheese croissant and hash browns from Dunkin Dounuts (Yes if you are wondering she at it all.) Since it was kind of a rushed morning we forgot to put the magic cream on, we both realized it when we walked into clinic. No worries though the awesome nurses were able to put some on before Mimi's port (central line) got accessed, she amazes me as she just watches and does not even flinch as a huge needle goes into her port. Today she just got Vincristine (chemo) through her port which took all of 5 minutes she colored a picture we got the CBC (complete blood count) back and we were on our way home!

Her blood counts were pretty good today (well... for her anyway)
Hgb 12.4
Hct 35.0
Platelets 127
Abs. Neut 1.5 (1500)

This site has the abbreviations explained http://www.labtestsonline.org/understanding/analytes/cbc/test.html

Thursday, September 3, 2009


A local bar has approached us to set up a Bike/Poker Run in Mimi's name. We are very touched.



THE RUMBLESEAT 482 Springfield St – Chicopee MA 01013 (413) 592-9025

RIDE LEAVES AT 11am - party to start @3pm

$20 FOR RIDERS $10 PASSENGERS/Non-riders

Wednesday, September 2, 2009

08:15 AM

After a large bowl of cereal Mimi asked for a bowl of ravioli...

(I am thinking OMG!) "Daddy ATE the leftover ravioli last night!"
"It's Okay Mommy I will have some chicken noodle soup"
(OMG #2 That was finished last night too) "We don't have any left"
"Hmmm Can you make me more ravioli with sauce?"
"Anything you want" LOL

So yes I was making Ravioli at 8:15AM And my baby was happy :) Right after her breakfast she took her meds which she has become a Pro at, no issues at all, just a week ago we were both crying and sobbing as I begged and bribed so she takes her medicine.

And now she is asking for a snack it is 9:25 still AM