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.

Sunday, January 31, 2010


Back to our beds tonight. Not that I minded snuggling with Mimster on the hospital bed but getting uninterrupted sleep tonight is much needed.

Oh and we did make the Italian Wedding Soup. Sooooo Good! I am going to post the recipe for the soup because it was so YUM! We also made brownies with walnuts but those just came out of a Ghiredelli box.

Magi is doing MUCH better she just needed her mama and some antibiotics.

Inpatient Day #5



Counts did not change too much but Mimi looks great, she is acting "bouncy" and she is due at the clinic on Tuesday. Discharge papers are being donr right now and we are being sent home with the knowledge that if ANYTHING looks odd to call ASAP.

Saturday, January 30, 2010

Inpatient Day #4

And guess what is up?

Dr. R. came in bright and early this morning to let us know the good news. We can go home today. We will probably take our time doing that since it is 2 degrees outside, yes TWO.

As of right now she will get her scheduled daily chemo next week (Tuesday through Friday.)

At home MagiBoo seems to be doing better, no fever, no stuffies and her mood has improved.

Okay, off to eat some hospital breakfast! Mmmm...

Scratch that, all the above...
We are still here waiting. She is finishing up some of the IV antibiotics.
I have also ran out and brought MagiBoo to the Dr. since her fever came back and she was not looking so great. She has a slight ear infection, new to me none of the girls ever had one. So her and Mimi will be on the same antibiotics while home.

We are staying another night. The ANC is still 100. I guess all the other counts are slowly going up but the ANC (absolute neutrophil count) is still the same. If we go home we might just end up right back here with a fever, so will just stay the night and cross our fingers for a better number than a 100. Mimi is not overly upset about staying here as long as she can make THE soup with me tomorrow. We found a really yummy recipe.

Friday, January 29, 2010

INpatient Day #3

Still here...

No fevers since yesterday afternoon. Leg pain has been back on and off, still being treated with Tylenol. She is on two antibiotics Vancomicin and one that starts with a C. New is mouth sores, no fun, that is being treated also. The mouth sores are chemo and/or count related, her WBC is still low.

Counts this morning were
WBC 2.1
Hgb 11.7
Platelets 68
Neutrophil 100

So right now we don't go home until fever stays away and counts go up. Mimi is doing okay being here but I can tell she is starting to get home sick since she is thinking of things to cook when we get home. Italian Wedding Soup is #1 on her list we have looked up some recipes a little while ago. I can't wait to have all the monkeys together...

Here is a pic of Mimi's tattoos on her head, cutest head ever!


It might be a late night. Miss Mimi took a 4 hour nap, woke up around 8pm.

Vancomicin has been added to Mimi's IV Pole that is starting to look like a Christmas tree. She also started Tamiflu (just in case this is a flu-ish thing.) She got her mouth sore swabbed and her nostril swabbed also, as always she was a super star. Poor Magi Boo has a fever at home hopefully hers will go down. We are hoping for no fevers anywhere tonight!

Thursday, January 28, 2010

Inpatient Day #2

Quick update. Mimi said I have only 5 minutes ;) to be back in the room.

Her fever came back yesterday late afternoon. The sinus x-ray showed there is a possible sinusitis. The leg pain has also come back yesterday and during the night not as bad as when we came in but enough that she asked for medicine. Hopefully today there will be a plan on how to figure out that pain, possible imaging.

We are coloring up the storm with scented markers and stuffing some envelopes Mimi wants to send out mail.

Iza and Magi are spending the day with their buddies Hannah and Norah and were all smiles when I dropped them off there this morning.

Okay so again quick update. Leg x-ray was fine, no fracture, nothing odd on it. There was a blood test done (a three letter one ERS maybe?) anyway that was okay as well. So right now she is on two different antibiotics and Tylenol as needed when she complains of leg pain. She also got another chest x-ray to make sure nothing started there since we checked last. She loves seeing the x-rays and people are prety nice around here to show them to her.

Iza and Magi are having a sleepover at Ela and Lily's which is keeping them entertained and Iza's mind off of Mimi being in the hospital, she was a little bummed that she can't see her but they have been calling each other through out the day it is quite funny to hear their little conversations.

Wednesday, January 27, 2010


Mimi was admitted to the hospital in the middle of the night after she woke up screaming in pain. We got to the hospital 15 minutes after she woke up in pain, the pain still remains a mystery, it was lower back pain and lower left pain. She also spiked a fever of 101.8.

She got blood draws, chest x-ray and urine sample taken.

After some pain meds she got some sleep and is fine this morning.

Besides the Hgb they are all pretty low.

WBC - 2.7
Hgb - 13.7
Platelets - 97
Neutrophil - 200

I will keep updating as I know more. The Hair Fairy DID come and Toto (aka Uncle Victor) brought the bag of goodies she has left behind.

I just swapped with Dan he is with Mimi while I am here to shower and play with the girls for a bit before I go back.

Mimi's chest x-ray came back and it is negative for pneumonia and bronchitis. She has been fever free since she got the Tylenol at around 1am this morning. She is not complaining of any pain and the pain in her back and leg has not been back, still a mystery... Next up is x-ray of her sinuses to check for any infection there (sinusitis.) Other than just being tired she is acting okay, watching Wizard of Oz AND sporting a Hungry Caterpillar Tattoo on her head! Of course there will be a picture coming, she has already asked me to bring the camera to the hospital.

Thank you everyone for the email and phone hugs :)

Tuesday, January 26, 2010

The Hair Fairy will be visiting tonight!

Mimi woke up from her morning nap just before 10:45am and asked if I can do her hair. I have been putting it up in a pony tail so it is not all over the place. As I was taking it out most of the hair fell out. I think I panicked a little not knowing what to say...

"You know how you loose your teeth and the tooth fairy comes... Well when you loose your hair the Hair fairy comes!"

"Nooo Way! Get it all off so I can put it in a bag and put it in under my pillow!"

So we brushed and brushed with the help of Iza and Magi and put it in a baggie and the hair is waiting for the hair fairy. The hair that is still there we styled it and she got a cute bob for today but when daddy comes home he will finish cutting all the hair off. Daddy also said he will cut all his hair off but Mimi said she wants the Hair Fairy to come only to her. LOL Mimi wants to hair for bed tonight.

I have been worried about this not really knowing how she will take it or how the girls will react but they blew me away. There were no tears, no one was sad, just a bathroom filled with girls, smiles and laughter. So there Cancer Take that!

I have the BEST kids ever!

Sunday, January 24, 2010

Mad at Cancer.

I usually try to make the best of any situation. Things get rough but there is always a positive when you look hard enough.

Yesterday it was very hard to find it.

It was a great sunny January Saturday all three girls had the most exciting job of being flower girls for my brother and my new sister-in-law (yey I got a sister!!!) Iza, Mimi and Magi DID walk down the very long aisle. So all that was happy. But I know that Mimi used every ounce of her energy for this because she pretty much slept through the rest of the beautiful ceremony. We did get the okay from Mimi's clinic to take her to the reception as long as she was feeling up to it, had a mask and lots of hand washing. She wanted to dance and party so badly. Poor thing she was so tired that she ran out on the dance floor once and then just stayed in my arms for the remainder of the night.

So I was mad because I wanted more than anything for her to be running and being wild just like her sisters, I know she wanted that too, she was so weak and sad it was breaking my heart to watch her. I wished I could just swap and take her pain if she just got to be a crazy monkey on the dance floor. She asked to go home but first she wanted to taste the cake, when the cake came she fell asleep and did not get to taste it. No worries, the speedy server got a to-go container of the yummy cake. Since Iza was having a blast we left her there to spend the night at the hotel with my parents.

I cried all the way home. Mad. Upset. That my five year old is having her childhood disturbed by this monster. That her hair is falling out even though I knew very well it would happen. She is mad that her eggies have hair in them.

Iza was such a sweetheart she gathered things at the hotel as gifts for Mimi to make her feel better. Things such as a water bottle, red twizzlers, hotel chocolates, popcorn, and all the flowers left over in the hotel rooms.

Today I woke up still mad but got over it quickly when Mimi woke up, smiled and asked if I can make a "lasagna like Garfield" for lunch and/or dinner. I can't stay mad it won't solve anything. So I am better now and off to make a Lasagna!

Thursday, January 21, 2010

A message from Mimi.

A joke for my friends:

Why does a cherry wear pants???

DUH! Because she does not have underwear!

That is it.

Hi am am feeling okay.

mimi rainbow! emilia t.omimi

Is this what teenage years will be like?

Poor Mimi is a puddle today.

Nothing is like she wants it to be. Nothing is making her happy. Iza is trying everything to cheer her up but they end up crying together. They were laying in bed this morning talking about old toys and Mimi AND Iza burst out in tears because they miss a stuffed pig. The steroids definitely make Mimi more emotional but one other odd thing I have been noticing is how she remembers the craziest things. She will talk about her past birthdays in detail, things she wore when we went random places and she talks and talks and talks... just don't mention the random stuffed animal! or there will be tears flowing.

I think I will be taking out finger paints after lunch today.

Tuesday, January 19, 2010

Clinic Day.

Most counts are okay but her ANC (*Neutrophil) is 660, not great. Mimi did get her scheduled chemo same as last week and did okay with it. Cough is still lingering but not getting worse.
Today is also Day 1 of 7 of steroids.

In other news... Iza lost a tooth #2 RIGHT before she fell asleep tonight, she really wanted a visit from the tooth fairy tonight.

*Neutrophils fight against infection and represent a subset of the white blood count. Neutropenia by definition is an ANC below 1800 (some sources use a lower value).
- Absolute neutrophil count (ANC) of 1000-1800:
Most patients will be given chemotherapy in this range.
Risk of infection is considered low.
- Mild neutropenia - Absolute neutrophil count (ANC) of 500-1000:
Carries with it a moderate risk of infection.
- Absolute neutrophil count (ANC) of less than 500:
Severe neutropenia - high risk of infection.

Friday, January 15, 2010

Hoping for no Fever...

Mimi has been really "off" today. Just tired and Ninety-nine-ing it, her temp has been in the high 99s. We will just lay low, color and watch movies and hope it passes.

Tuesday, January 12, 2010

Clinic Day.

Counts are good, although I forgot to grab the paper so I don't know what they were exactly. Mimi got her scheduled chemo and got checked out by a bunch of visiting medical students, she didn't mind. She does not have a fever but has been in the 99 area, her cough is still here and it seemed to get worse in the last two days but her lungs still sound clear.

On the three minute drive home she always looks so sad but the second she sees two familiar vans in our driveway and hears six little girls she is all smiles and goes to play and be loud like nothing ever happened. I love that it makes my heart happy.

Today's Chemo

Friday, January 8, 2010

My kid is a Rock and a Star :)

Her tiny legs got two gigantic shots, one in each leg, at the same time.
PEG-L-asparaginase is the chemo she received.

She cried when she saw the needle and a minute or two after but bounced right back and asked to go in the "playroom" and get a massage. We hung out a bit to make sure there was no reaction. The clinic had given us tickets to go to a hockey game tonight, she was super psyched to go but got really tired around dinner time and asked if we could just stay home.

So Movie, Popcorn and Strawberry Milk on the couch it was!

Wednesday, January 6, 2010

Not so fun morning...

Poor Mimi. I think we have all been spoiled by the normal phase last month. That ended, we will be looking to find another new normal during the next 8 weeks.

This morning I heard Mimi's little feet running to me trying to find a bucket, and again after her self made yellow scrambled EGGIEZ breakfast. She asked for a bath and was a little better for the rest of the day, but definetly very emotional. The steroids are kicking in.

Tuesday, January 5, 2010

Long Day at the Clinic.

Not Bad. Just LONG.Today was Day 1 of 57 of Standard Delayed Intensification

First off I forgot to put on the Emla (numbing cream) I let Mimi sleep in so she would not have to be awake and hungry for too long. No worries that got taken care of when we got there. Next were counts, they were good. But since Mimi still has a cough and the Onc. thought he heard a "crackle" she was sent for a chest X-ray which came back quickly and negative Yey! So off to the procedure room we went (with a visitor - Kate :) Mimi perked up a bit for that) She was a bit nervous before the anaesthesia but went to sleep calmly. She got Inrathecal Methotrexate. I was nothing BUT calm, I hate sitting waiting in the waiting room, I watch the door and anxiously await the nurses to come get me when she is in the recovery room. She woke up pretty quickly today abut was very out of it for a while since she got Morphine today during her procedure, which is now making her funny, literally funny she is sitting next to me while I write this and is making up jokes that I need to type so Nana can read them :) After the Spinal, we went back upstairs to the clinic for the rest of the chemo (Doxorubicin). She is pretty tired now. We will just hang out watching movies tonight. Tonight we also start Dexamethasone (steroid) for 7 days.

A Joke from Mimi:
Knock Knock.
Who is there?
There is an orange on your head.
There is a plant growing on your head.
And that is it.

Thanks Meg and Eryn for a fun Sleep Over!!! G-Force! love, MIMI IZA

Today's Counts
WBC - 5.5
Hgb - 13.3
Platelets - 246
Neutrophil - 2300

Saturday, January 2, 2010

Happy 2010!

This was the first year that Iza and Mimi got to stay up and "party" as well as watch the ball drop in NYC (on TV) we had a great time at home with Friends and Family. Magi partied until about 11 :)

Mimi did not have any chemo on the 31st... We went in but only to be sent home sine we somehow had the wrong date OOPS! So Mimi got to spend New Years without feeling yucky. We go back on the 5th first thing in the morning for a spinal tap with chemo.