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.

Friday, November 27, 2009

Clinic Day.

Super quick day, in at 9 out by 11! I think that is a record for us.

Her counts were fine so she got the IV Vincristine and Methotrexate.

WBC - 4.1
Hgb - 11.3
Platelets - 236
Neutrophil - 1300

Mimi will be going back to the clinic in 10 days (AS A FIVE YEAR OLD!) but this time Mimi will be getting the "sleepy medicine" Methotrexate (intrathecal administration, Spinal Tap) and Vincristine.

Thursday, November 26, 2009

Thankful.

Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance, chaos to order, confusion to clarity.
It can turn a meal into a feast, a house into a home, a stranger into a friend.
Gratitude makes sense of our past, brings peace for today,
and creates a vision for tomorrow.
- Melody Beattie

Tuesday, November 24, 2009

It's Tuesday and we are HOME.

This morning Miss Mimi pulled her needle out at some point between 5 and 6am, the nurse came in to give her her antibiotic (IV through her port) when she checked her port site she did not see the needle. She woke me up and asked if someone came in to de-access her, I did not hear anyone and Mimi was sleeping soundly right next to me. We looked all around and found the needle near her sleeve! She somehow pulled it out in her sleep. So 6:30 am we had to wake Sleeping Beauty up to re-access her, she was not overly thrilled about being woken up (but fine with getting a 3/4 inch needle LOL) thank goodness for the prize bucket!

Mimi looked good and her cutures were all still negative so we got the okay to go home before lunch, of course it takes a while to discharge so we did not leave until a bit after noon.

We left with a script for Benadryl due to the allergic reaction Mimi got to the tegaderm adhesive. Her chest looks awful, red and blistery, she is also complaining of it being itchy. The nurses did find tape today that will (hopefully) work for her and gave me an extra on incase we go somewhere and there is none avaiable.

Her counts looked good on Sunday but dropped significantly today, her Onc. gave her the okay to go home today since she is due at the clinic on Friday anyway. I am hoping for a UNeventful and ThankFUL Thanksgiving at HOME.

Counts - 11/22 - 11/24
WBC - 6.1 - 4.1
Hgb - 11.2 - 12.1
Platelets - 192 - 158
Neutrophil - 3500 - 1300

Night-Night with Sparkles at the hospital.


Drinking her tea and watching TV, I love the new yellow walls in the children's hospital rooms.

Monday, November 23, 2009

Monday Update.

We are still waiting for blood cultures to be back (they take 48 hours) so far everything looks good. Mimi does have a cough and a bit of a stuffy nose. She has not had a fever since she was admitted last night so that is good also. She is acting fine and also ate okay this morning.

Her only complaint is her itchy port, she has been getting a rash from the tape (tegadrem) they use to hold her port in place. One of the nurses last night changed her dressing and used a barrier between her tape and her skin and it seems to be better although her skin is irritated from yesterday.

As far as I know we will probably be staying another night unless the Docs decide otherwise.

I am home with Monkey Magi and Monkey Iza while Daddy and Mimi watch a movie at the hospital. I will head back over there in a bit.

Update 7:30PM
All is looking well, Mimi's cough is better, her counts look good... She does have to stay the night since they are keeping her 48 hours to "grow" the blood cultures. She is happy we got to do some fun crafts, read some books, she found a student nurse who let her play hair dresser on her hair, she got to listen to a song made JUST for her from Songs of Love. I will try uploading it here for all to hear. So if all continues as it is, we will be home tomorrow.

Sunday, November 22, 2009

Night at the Hospital.

Mimi has been acting a little off, no appetite, she did not sleep well last night which is why I also kept checking her temp all day but it went from being in 99s to 101.7 in a half hour. Mimi spiked a fever right before dinner time (4:30pm), I called the Clinic and at 4:45 there was a room ready and we were on our way to drop Iza and Magi off at Babcia and Dziadzu's and Mimi to the hospital. By 5:15 her port was accessed, blood drawn and we are just waiting to see the counts, I came home to just grab by eye solution (I have found that sleeping with my contacts is NOT fun)

I will update when I know more...

Monday, November 16, 2009

A Long Clinic Day...

This morning was a long busy day at the clinic. Thank you Mama Kate and Mama Jess for watching the monkeys! Because of the new H1N1 regulations Iza is not allowed to come to the clinic. Mimi was a little bummed to go today and miss out on the fun at home so I was glad too see a bunch of little girls that she got to be artsy with and to top it off have a pizza lunch party! Thanks to our fave life specialist who ordered the pizza. Lots of cute little girls hanging out at the forest of "IV Trees" crafting away while getting their chemo. I wish I had my camera! Mimi's little toes did not leave the clinic without getting a great foot rub from J the massage therapist, no worried mom got a back rub also. Once again it was hard to leave, she had to talk to every person that we passed on the way out including the valet "boy".

Counts were good:
WBC - 5.2
HGB - 12.4
HCT - 34.9
Platelets - 189
Neutrophil - 2000

When I got home with Mimi I left her at home and took Iza in for a rash on her hands that is for now being treated as eczema, since we were there she also got CBC (complete blood count) done. She was a rock star, and did not even flinch as her blood was taken!

Fast Forward to tonight... She took a two hour nap before dinner. Nausea kicked in for Mimi. Poor thing really wanted chicken quesadillas for dinner she has been asking for them since breakfast. She could not keep any food down. Zofran (Ondansetron) did not help, so I gave her Ativan (Lorazepam) and I think she felt a little better but she did go to bed with her bucket next to her.

We had a great Sunday spent outside running through leaves, throwing rocks in streams and enjoying Herrell's Ice Cream with Auntie Mina :)



Friday, November 6, 2009

Clinic Day.

Counts were great, the ANC doubled from last week. Finally we are back on schedule. Today Mimi started the Interim Maintenance. She got the IV Vincristine and Methotrexate, while playing on the Nintendo game box.

WBC - 4.7
HGB - 12.8
HCT - 36.2
Platelets - 205
Neutrophil - 1500


The girls were being super cute playing in Magi's room yesterday. I love normal days.

Wednesday, November 4, 2009

Mimi Make-A-Wish!

I wish to:


To Feed Giraffes...



then go eat Ravioli Dinner...



with Princesses...



of course at the Disney Castle!


This is a very Mimi wish.

Tuesday, November 3, 2009

Can I get a YEY!?

ANC 790!!!

We were prepared for a long day at the clinic today, packed lunch snacks, brought coloring books (as if they don't have enough there) but it ended up being a quick visit. Mimi's counts went up so she did NOT have to get a bone marrow aspiration procedure. We both did the happy dance at the clinic today. I was SO glad! She was also, I could tell she has been really worried about it all day yesterday and even today she was not her perky self. Her strange hip pain, "butt" pain as well as a morning neck pain don't seem to bother her anymore so for right now we will just watch and see. We will resume Chemo on Friday morning.

Mimi lost another front tooth last night! So now for Christmas she can ask for her two front teeth ;)

And a bonus, here is a picture of our brand new TWO year old aka MagiBoo, as she eats her birthday chocolate frosted halloween sprinkled doughnut that is bigger than her head.