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, March 26, 2010

Disney Here We Come!!!

What a BIG day. Fist off since we were going just for counts I conveniently forgot to put the Emla Cream (numbing cream) on Mimi. When we got to the clinic she was asked if she would like to do a finger prick, flat out NO. She would rather the large needle in her chest... She thought about it remembered when Auntie Stacey showed her how she does finger pricks (to check her blood sugar) and right when the Emla cream was coming Mimi decided "Let's do the finger prick!" She cried for about 10 seconds more because of the popping noise I think than anything and told me later it didn't really hurt.

We went in the playroom for some play dough fun, massage and the best news! Mimi's counts were awesome which makes me feel so much better about going to Disney, a wish Mimi made back in November. We are all SO excited to go! We will be leaving this Sunday until ext Saturday. I am sure we will have about a million pictures from both cameras to share!

Today's Super Counts:
WBC - 4.90
Hgb - 12.0
Platelets - 243
Neutrophil - 2620!

Monday, March 22, 2010

So far... Today's Menu.

7:15am - Mama made Pizza Bagels (nausea kicked in so they were not finished)
7:25am - Oatmeal with Almonds
7:40am - Cream of Wheat (NO Cinnamon, ONLY Magi likes it)
8:00am - Three Mama Made Meatballs
9:45am - Three more Mama Made Meatballs

Love it!

Incase you are wondering that is all what just Mimi ate, her sisters chose to have cream of wheat from today's breakfast menu.

Friday, March 19, 2010

SUN is the best MEDICINE.

For everyone!

You might not even know that we are half way through steroid week for Mimi! This week could have been worse if we were stuck at home but since it is nice out I have ignored every household chore and enjoyed the weather and friends. Mimi has had a couple of meltdowns but we have been able to breathe through them. Yes breathing, she was in a 20 minute fit over something that set her off and I just kept calmly asking her to look me in the eyes, once she did we took some deep breaths. Once she was able to do that we talked through what set her off. It has worked every time so I am sticking to it! I tried it on the two year old tantrums and it was a NO GO, I have to find something else for that one...

So far other than some nausea in the mornings and getting tired late in the afternoon Mimi has been doing well. She takes her pills without issues, this week there is a lot of them. Good thing we have a calendar made by one of the nurses with all the meds and check boxes next to them. One of the pills Mimi takes daily has to be taken 2 hours after dinner so I have been staying up to wake her up and give it to her. I don't mind staying up I just feel bad waking her up from a deep sleep.

Maintenance cycle lasts 12 weeks (84 days) and it is repeated for two years from the start of Interim Maintenance. (I have to check when that was)

Vincristine - IV Push, Once every 4 weeks
Dexamethasone - Pill, twice a day for 5 days each month
Methotrexate - Pill, once a week
Mercaptopurine - Pill, every night 2 hours after eating.
Methotrexate - IT (through Spinal Tap) once every 12 weeks
Also Bactrim (antibiotic) on weekends.

Tuesday, March 16, 2010

Maintenance Here We Come!

Finally! Counts are up Up UP!
WBC - 3.98
Hgb - 12.0
Platelets - 205
Neutrophil - 1540!!!

Today's Chemo:
Vincristine (port)
Methotrexate (intrathecal Methotrexate, Spinal Tap)

Today's clinic visit was photographed. Mimi saw pictures on a little girls blog of her procedure day so she asked if I can do the same for her. So below are some pics of her clinic visit during a procedure day.

Around 9am Mimi gets accessed. Today's milestone, she sat by herself! Since she had her port she sat in my lap every time she got accessed but today she asked to sit on her own so I can take pics. She does not mind any part of being accessed except the smell of the alcohol wipe. She is also a big help with putting the tape on. Since she gets a reaction to Tegaderm we use this "fancy" tape (IV3000)

"My tubbies! Mr. Purple and Mr. Yellow" Mimi gets to fill these with her blood and the go down the hall to the lab where she got to even drop them off before.

10:45 am - While we wait a couple of minutes for the counts to be back Mimi hung out in the playroom coloring and getting a foot rub, somehow I forgot to get a pic of that. I might have been distracted by my back rub. 15 minutes later counts are back and we are good to go downstairs for the procedure! The Child Life Specialist comes with us with a fun project to do while we wait to go into the procedure room.

And here is one of Mimi's pictures, one of many she made today.

Around 11am - In the procedure room. The man in blue is one of the two anesthesiologist that was there today. Mimi gets a little anxious when she knows the "sleepy medicine" is coming but everyone there is pretty awesome doing their job and she is sleeping within seconds.

Here she is sleeping. The oxygen does not go over her face until she is asleep. So she was confused what it was when she saw this picture.

Around 11:45am Back in the recovery room. All went well. Mimi was a sleeper today she slept well over an hour after the procedure was over. She loves those warm blankets!

1pm - Our three minute drive home and yes the warm blanket came home with us and no it does not stay warm.

1:30pm - Having lunch, those long awaited red peppers with dip aka. Ranch Dressing. It was so nice out she sat outside in the sun with her sisters.

Tuesday, March 9, 2010

On Hold again...

ANC 600

Boo. That is how we feel about that.

As I said before it needs to be over 750 for chemo. So today was a quick day. A little game of Zingo, Scene It with S, of course a foot massage from J and we were back home for a beach party. I missed the party since I went to work for a bit but, according to daddy there were towels, bathing suits, not everyone always getting along and Cheerios everywhere...

Once again we will keep fingers crossed and hope for better counts next Tuesday.

We are all enjoying the weather it feels so good to be outside in the sun, hopefully it means Spring is just around the corner. Iza and Mimi got to use their Christmas presents outside finally!

Tuesday, March 2, 2010

On Hold.

Well ANC did go up but just a tiny bit to 360. It needs to be over 750 for chemo and to start the last longest phase of treatment, called *Maintenance. Which is just around the corner for Mimi.

It is really nice out today so we will head out to burn some of this triple monkey energy off outside.

WBC - 1.71
Hgb - 9.9
Platelets - 197
Neutrophil - 360

*Maintenance therapy: If a patient stays in remission after induction and consolidation therapy, maintenance therapy begins. The goal is to destroy any disease cells that remain so that the leukemia is completely gone. It may last two to three years.

Monday, March 1, 2010

Late night.

I let the girls stay up a little later today so Mimi could eat right before bed. She is scheduled for a Lumbar Puncture (Spinal Tap) tomorrow so no eating or drinking after midnight. And I have noticed she does better if she eats late and goes to bed. The procedure tomorrow is count dependent so we are hoping that her counts have gone UP.

This past week I was worried about her appetite she was not eating much of anything and taking forever to eat a small meal. Well all that worry and she started eating two days ago and today ate enough to make up for the week she was not eating. Appetite IS back!

We had a non eventful home-cation. I got to work a bit, it is good to be at the hospital NOT as a patient. I took Iza and Magi out and about for play dates and story times, while Mimi stayed home and got Daddy all to herself.