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.

Tuesday, April 27, 2010

Touch of Comfort.

A while back I remember seeing a commercial for Downy Touch of Comfort and thought it was really neat. Well this past week when we were in the hospital one of the Child Life Specialists came in and gave Mimi a super cute quilt, that is so perfect for her! On the back of it is a tag with the makers name on it and the name of the quilt. We went online and registered her quilt and read some stories of other kids that got quilts also. Such a great program!

P.S. Check out the hair on Mimi's head!

Chemo on Hold.

Quick visit today. Finger prick and counts, we were in and out in a half hour!

Mimi's neutrophil count is low, she is neutropenic, so chemo is being held until next week when we go in for counts and hopefully they will go back up enough to continue. I am hoping for some SUN because being quarantined inside the house with three kids at home gets a bit nuts to say the least... I am lining up some indoor activities right now.

Today's Counts:
WBC -
Hgb - 10.6
Platelets - 177
Neutrophil - 290

Saturday, April 24, 2010

Happy.



Big Hugs. Yellow Sponge Bob Ice Cream. Horses and Horse rides!
Strawberry Ice Cream. Slimy Giant Tadpoles. Hungry Lamas!
Gumball Eye balls Sponge Bob Ice Cream. Ride on Daisy. Making Wishes!
Fantastic All-Girl Kind of a Day!

Friday, April 23, 2010

Waiting for Discharge Papers.

Yes!

So the bacteria is believed to be a contaminate. The second blood cultures that were taken (on Wed.) have not grown any bacteria which is reassuring. She will have a blood culture done at some point next week just to triple check but that will be done at the clinic. No extra meds for home and continuing with nightly chemo pill. Oh and we are also watching for any chicken pox spots in the next couple of days since Mimi might have been exposed on Monday while she was in the playroom, although she was wearing a mask, has had the vax, and was only there for a couple of minutes.

Mimi looks great, her ears look alot better. So I am waiting to sign my name on dotted line and take my Mimers home to see her fellow monkey sisters!

Request for tonight: Ravioli and Movie Night.

Thursday, April 22, 2010

We got a little plan.

So the plan is we are going to wait until tomorrow to see which gram-negative bacteria is growing, to make sure we have the correct antibiotic to treat it. Also to see if the blood culture from yesterday has grown anything, so far it has not, it might be because the original as contaminated or the antibiotics she is getting for the ear infection are helping. Infectious Diseases wants Mimi to stay overnight and more than likely discharged tomorrow.

The question came up, How serious is this infection? Reality is that if we know it is in fact in her blood, and once we know which one it is, the doctors will know which antibiotic will get rid of it and she will be fine. Another question if she does have this bacteria, how did she get it? She is a kid and could have gotten it anywhere, being immunosuppressed she has a higher chance of catching things.

She looks fine, she is eating, and had loads of energy, she has been having tricycle races all over the 4th floor, it is quite fun to keep up with her IV pole, come on down and try it.

Waiting for a plan.

Late this morning we found out from the doctors the bacteria on the blood culture is gram-negative, right now we are waiting for Infectious Disease (sounds scary) to go into the lab and I guess confirm that. If it is in fact that, I believe the plan is that Mimi will go home and a nurse will come to the house and teach us how to administer the antibiotics daily to Mimi through her port. But we are still waiting for a definite plan.

Mimi's counts have dropped since Monday, when we came in her Neutrophils were around 3500 right now they are around 700, which probably means her body is trying to fight this, all chemo is on hold so she can have something to fight this infection with.

Wednesday, April 21, 2010

Positive Blood Culture.

We were SO close on going home. But NO GO.

This morning Mimi's Blood Culture that was taken on Monday night turned out to be positive. It could be one of two things a bloodstream infection or false positive caused by skin contamination. We have to wait until tomorrow morning to see exactly what "grew" on that culture. Also another blood culture was taken this afternoon to see if it will have the same outcome but we are hoping it was just contamination. (If this is all confusing, check the link above, I just learned more than I probably needed to about blood cultures from the hospital and from Google)

Mimi was ready to go home and I think her sisters are ready to have her home but hopefully tomorrow. Iza and Magi came to visit for a while and got to play dress up and doctor on the hospital play deck with child life. She is running around the halls with her IV pole and chatting it up with the hospital staff, she looks so much better than yesterday.

So Far...

Mimi is looking good.

She was feeling good last night she got to hang out with Babcia all afternoon and last night, while I went home and hung out with Miss Magi Boo who was in need of mommy time. Iza got to have a sleepover with Hannah. Mimi played, colored, got magic bubbles, when I got back at around 9pm she was all smiles. She also ate! Some crackers, cookies, but does not want to drink. It was less of a stressful night.

So far this morning she woke up late, but has eaten two bowls of Toasty Os with the milk. So far it's good. We are waiting for counts and for the Onc. to come in. Hoping to go home!

Okay off to get coffee. For me.

Tuesday, April 20, 2010

ER Visit and Hospital Stay.

All was fine in our house with 4 bouncy girls, one extra for a very anticipated sleepover, until about 8pm when Mimi started to not feel well. She was complaining of a stomach ache, which followed with vomiting, headache... but no fever. Her Onc. had us bring her to the ER, where we got right in, we flew through triage into a closed room tucked away in the Pedi ER section. I was nervous since we have never gone through the ER with Mimi, I was not sure how the port access would go. The nurse was awesome though and no tears or issues from Mimi. After we got counts, which were good, and found out she had a double ear infection she was admitted to the floor for observation. She looked good this morning and we "thought" we might even go home until the vomiting started again, so we are staying the night.

She is quiet and tired right now, I know she does not feel well because there are crafts in front of her and she has not touched them.

I am mad, mad for her because she can't be at the marionette play today like we planned, I am mad for her sisters because they had to miss out on fun, and for their best buddy because her first sleepover was ruined... okay whining party over.

Wednesday, April 14, 2010

Clinic Day (Yesterday)

Quick visit. Mimi got accessed while Iza and Magi watched. One one hand I am glad they are not scared of the whole needle and blood thing but than I wonder if I should worry that they think it is really interesting... Later that day all the dolls were getting ports and "vis-crint-ines"

While we waited for counts to come back all three girls were treated to hand massages. Counts came back good enough to continue all our meds (Methotrexate and Mercaptopurine) plus start Dexamethasone (steroid) for 5 days as well. Yey! So far after 3 doses Mimi's Super Smell is back and she was not a fan of my "hospital" smell when I came back from work today.

Counts:
WBC - 2.2
Hgb - 10.6
Platelets - 177
Neutrophil - 1100

Saturday, April 10, 2010

Yey! We are all home.

Mimi was discharged around 7pm. I guess a kid that is bouncing off walls and using up every craft that is coming from child life needs to be home ;) Her fever never came back and we have a clinic visit on Tuesday so we were allowed to go home, with the knowledge that if fever comes back we will return.

Thank You "Movie guy in the Green shirt" ;) who brought LOADS of crafts in today and sent us home with glitter!

Mimi is now sleeping in her bed with a promise she can come to our bed after her nighty chemo pill.

Still here.

Mimi is doing well, no fevers. Right now we are waiting for blood counts to come back and as long as they have not dropped and we are still fever free we can go home today.

She is making pictures loaded with glitter for Iza and Magi, I like glitter that I don't have to clean up ;)


3pm
We are not going home. Counts dropped.
Yesterday WBC 7.5
Today WBC 4.7

Friday, April 9, 2010

Inpatient...

So four hours after the last post Mimi was in our bed talking in her sleep and grinding her teeth. Never a good sign. Her temp was 102, she was miserable with back and leg pain. We were admitted around 4:30am. Once we got her she got antibiotics and some fluids and we tried to get some sleep. She is fine now, in a good mood no fever just high heart rate. Her counts are great so it is probably a viral infection.

Cancer has a way of being a JERK...

Wednesday, April 7, 2010

Back to Massachusetts...

I have not been able to update for several reasons. Some of them are, 5 bags to unpack (we left with two) groceries, back to work, and the gorgeous weather that followed us back has been keeping us outside in the sun. 80s in April around here in not a regular temperature!

I don't know where to begin to start telling stories from our amazing trip. First of all we are so grateful to everyone who made this trip possible from Child Life that told us about it and helped fill out the paper work to the "Wish People" from Make A Wish who did all the arrangements. Dottie and a bunch of great friends and family members who contributed to the full princess makeovers. The most amazing place Give Kids the World, they truly did give our kids the world and added a cherry on top!


This week I realized how much our family had suffered the past couple of months, we were able to reconnect and have carefree fun at the Give Kids the World Village and all the fun places they had to offer. We came home refreshed, although Dan might still be recovering from the Disney crowds. We are back in Massachusetts, as Magi told everyone that would listen, and our batteries have been recharged to keep on going!


Without further delay here is our story in pictures of course. Get your popcorn and enjoy!


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