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, February 24, 2010

Clinic Day.

Just a quick blood draw for counts today. Numbers are not looking so great though, Mimi is still neutropenic. So we will be hanging out at home watching movies which is okay since the weather outside is gross - wet, slushy and cold. Dan is home this week too so we are having a family home-cation!

WBC - 1.44
Hgb - 8.7
Platelets - 139
Neutrophil - 210

Monday, February 22, 2010

Reporting from Tantrum Central...

You would never know it looking at the above picture that Mimi screamed, cried and pouted for 45 minutes or more all while getting dressed to go outside, during the car ride, and in the middle of the park. And yes she has lots of reasons to scream. But today it was because first NONE of her shirts felt right they were all "bugging" her, then the straps of her car seat were "not normal" and after all that she no longer wanted to be outside she wanted to be home. There is probably a book out there that tells you how to deal with a cancer child who is throwing a fit, but I have not had time to find it or read it so today I was just winging it. That is what I do I wing it. I let her scream and yell, I think she needed to get it out and she was not harming anything or anyone, although I think all the animals who were hibernating have left the park today. I simply told her why she needed to get dressed, why the car seat straps had to be there, and we were at the park to have fun. I did that as calm as a parent who might also loose it could. She did not have to have fun she could sit in the stroller and wait for her sisters to be done and we would go home. She did realize she wanted to have fun when she saw Iza and Magi on the see-saw and we ended up having a great time at the park. With a picture and a new rock collection to prove it.

I think part of why she is feeling like this (aside from the obvious) is adjusting to being at home after the week hospital stay. At the hospital she presses the magic red button and wishes are her commands, she gets mommy all to herself. She comes home to rules and sisters. Not that she minds her sisters or even the rules but it is an adjustment.

Since we are living in a bubble right now hoping for higher counts on Wednesday, we have been crafting maniacs. Auntie Stacey brought us HUGE paper rolls that we have made life size paper dolls out of, we have also colored them and labeled body parts, so our art class turned into science class and then turned into reading class... I will do anything to avoid tantrums from the five year olds the two year old I guess has to be TWO.

Friday, February 19, 2010

Day 7. And we can go HOME!

Yey. Mimi is going home with an Levaquin (antibiotic) for five days. She has a really hard time with liquid meds staying down but the docs were able to do a pill she will just take it twice a day, instead of the liquid once a day. We are do at the clinic Wednsday. I just really hope and pray that there will be no fevers and counts will go up while we are at home.

I realized that it was exactly six months ago that we were here for 10 days during induction...

Thursday, February 18, 2010

Day # 6

I waited to post until I talked to Mimi's Onc.

Last night Mimi had a random "throw-up" incident. She didn't feel sick or anything just asked for her bucket, got sick and went to sleep. A doc checked her out and she looked and sounded fine. She slept all night and slept in this morning.

We might go home depending on a couple of things.
Since Mimi's heart rate has been high off and on they might do an EKG, just to check if there is anything off. The other thing is if she is sent home today she will go home on a 5 day antibiotic since her ANC is low, it is just up to me if I want her on that antibiotic. Our other option is to stay the night wait and hope for the counts to go up on their own and go home without antibiotics... oh the decisions.

4:30 Update
We are staying at the hospital tonight. The plan is to watch the counts and hope they go up. She came in they were zero, they are at 200 we are hoping they get to 500 but she will probably be able to go home if they get to 300, that way we know they are going up. The antibiotic that Mimi might go home on is Levaquin but we will address that tomorrow. The EKG and heart ultrasound results will be in later today. Mimi liked watching the ultrasound of her heart but she said it would be better if it was in color LOL.

Wednesday, February 17, 2010

Day # 5...

We have been moved into a new room last night while Meg was here to hang out with Miss Mimi. We redecorated with the hearts and had some new ones to add! She is in a room with a view, good thing since she will be here another night. ANC is still low (300) and Dr. L would like to see it a little higher before she goes home. Tomorrow sounds more promising.

Mimi really likes to know about how things work and why, she wanted t know all about platelets so we did a bunch of research and she got to see some pictures. One of the best books I have found that you can read online is Chemo To The Rescue. It explains Chemo and Leukemia to kids in kid terms.

Iza was overjoyed to see Mimi yesterday. They got to be goofballs together while Mimi was getting her platelets. Iza was psyched to have the hospital snacks, saltine crackers, graham crackers, and a cherry popsicle.

Thank you Miss Shelley's Pre-K Class from West Chester, PA for the hearts in the mail and prayers!

Tuesday, February 16, 2010

Inatient Day 4

We just got word that there will be day #5 also. Mimi's counts dropped from yesterday, which could be partly to the fact she got a double dose of Thioguanine (pill). Since her platelets dropped to 18 from 26 yesterday she will be getting a transfusion this afternoon. Her liver enzymes were also elevated, which does happen with Thioguanine, but she will be monitored today.

She is doing okay being stuck here, keeping busy crafting, playing games and watching way too much TV. Iza on the other hand is really missing her sister she was so sad this morning, I went to the "stash" of toys to cheer her up a bit.

Hospital School.
Mimi has been doing really well sounding out and writing words she decided to practice below, soon she will be writing her own posts!
find book in book store x-ray dog book milk lisa pops nana lily ella hannah magi mommy love kat kate princess box fox cup izabella

Monday, February 15, 2010

Inpatient Day 3

We are still here... Mimi's counts are a bit better she looks great. She is getting silly which means she is ready for home. She spent most of the morning with Toto and Eryn while I went home to take care of Iza who was resting from a 12 hour stomach bug and MagiBoo who needed mama snuggles.

We will probably go home tomorrow as long as counts keep going up. Her platelets went from 22 yesterday to 26 today so no platelet transfusion needed today.

Okay I am off to find a flashlight for the fort on Mimi's bed.

Sunday, February 14, 2010

Inpatient Day 2 - HAPPY VALENTINES DAY!!!

And a Happy day it is. Mimi had a good night. She woke up this morning her bouncy self and looking "pinker" her heart rate also went down. She is getting IV Antibiotics and fluids right now. I am not sure what the plan is for today but we will find out soon when her Onc. comes in.

Mimi is blowing a Valentine's Day kiss.

The other day Mimi got mail from some pretty cool kids at Hoover Elementary School in New Berlin, WI they all colored her hearts that you see in the pic so this morning when she was still sleeping I decorated her hospital bedside, she was happy to see all the hearts when she woke up.

She would like to say thank you for all the mail, hearts and hugs this week as well as tell Auntie Tracy that she got to the 6th level of the Musketeers game and got the red dress and hat.

Saturday, February 13, 2010


Mimi woke up this morning not herself, nauseous, really tired and by 10am she was falling asleep, and sure enough all that was followed by a fever. Poor thing she was already bummed she could not go to Ella and Lily birthday party and now she was going to the hospital... We got here at about 11:30 am. She was accessed, blood was taken we are waiting for her counts right now. She did not have a fever when we got here but I think it just spiked back up because she feels really hot. Blood pressure and lungs all sound fine, but her heart rate is high, 155. She is sound asleep right now not for too long since she will also be getting blood taken from her arm. I already know this will be NO fun.

Getting the blood from the vain was not that bad, Mimi said it didn't hurt as bad as before. Before meaning when she was first diagnosed, she HATED getting the IVs in her arm. Counts came back and they are "in the gutter" Mimi is sound asleep waiting for her blood to get here. She will be getting red blood cells today and a possibly platelets tomorrow since her platelets were at 29.

Since I last updated Mimi spiked a fever of 103.5 and her heart rate was in the 180s. Not good. But it came down with Tylenol and she was able to get her blood. She has gotten lots of IV fluids, eaten some dinner and is now watching a Disney movie.

Tuesday, February 9, 2010

Clinic Day.

Back in clinic today for some Ara-C (Cytarabine). Mimi's counts are low, as expected during this phase of treatment. We were "warned" that there might be a fever with these low counts. Although you would never know that her counts are low the way she is bouncing off the walls with her sisters, although it might have something to do with Cabin Fever.

We are hoping to stay away from the hospital this weekend since it is Valentine's day, but of course if it happens we will make the best of it...

Counts: (I did not grab the paper I will get it tomorrow)
Hgb - 8.7
Platelets - 127
Neutrophil - Low

Friday, February 5, 2010


Mimi gets a little break from clinic until Tuesday. This week has been quite busy, clinic every morning, still trying to catch up on housework piled up since we were in the hospital, a visit from our uncle Wiesiek from Poland, Magi getting over her sickies and missing mommy... the list goes on. Most important though - we are all at home and it's loud which is a sign of happy!

Mimi and her sisters have also gotten some fun mail! They say Thank you!!!

She has been loving this hat from Sarah Julia and Olivia and has gotten many compliments on it.

A little friend Kieran has also sent some fun mail including these super cute bracelets for all the girls but getting Magi to stay still for a pic is a task...

Tuesday, February 2, 2010

Clinic Day.

One LONG day of chemo and one very hungry 5 year old.
Counts were good enough for chemo so off for a spinal tap she went.

We will be at the clinic daily this week as well as next week for Cytarabine. It will ba a LONG two weeks. ALL the craft buckets and movies will be sure to come out.

Todays Chemo
Methotrexate (intrathecal Methotrexate, Spinal Tap)
Cyclophosphamide (port)
Cytarabine (port)
Thioguanine (pill)

Todays Counts (MUCH better than Sunday)
WBC - 5.87
Hgb - 10.6
Platelets - 264
Neutrophil - 91o

Thank you Tracy for spoiling us rotten today - Smoooch!!!