Officially OFF Treatment.

2 years, 2 months, 26 days

over 40 days inpatient

over 75 Clinic visits

Bone Marrow biopsies and aspirations

Lumbar Punctures

Blood and Platelet transfusions

Numerous Xrays

Multiple CT scans

MRIs

Just one Nuclear Bone Scan

One portacath

A very long List of Medications

She did it! We did it! I remember over two years ago looking at 4 and a half year old Mimi laying in a huge hospital bed as she was sleeping and crying thinking that she will have to fight until she is almost 7! It seemed like a life time away. There were definitely scary days that felt like the clock never moved and daylight was not coming fast enough. We enjoyed every good day, and made a bad day better. The second counts were just over the "good enough" mark we were out the door doing something and making every moment count. We are done with treatment but we are a part of a club, a club we didn't ask to join. It changed our lives not for good or bad, just changed.

Tonight I was putting the girls to bed and Mimi asked

"Is tonight is really the last night I will give her a pill?"

I said "Yes."

"So that means tomorrow I can have a LARGE glass of milk RIGHT before I go to bed?!"

She has been unable to have milk at least 2-3 hours before she has her nightly chemo and that has been the hardest thing for her. Not the giant needles in her chest or the crazy steroid days... go figure! As I was walking out the room Iza looked at me with sad eyes and said "Does that mean tonight I am done being a SuperSib?" I assured her She will ALWAYS be a SuperSib! Everyone went to bed happy.

Q&A

Is Mimi's cancer gone? Short answer YES, It has been gone and the last two years we have been doing a lot to keep it from coming back! Mimi went in to remission, meaning there was no longer evidence of cancer cells in her body, soon after we started treatment. To keep it that way she continued with a long maintenance treatment to keep the cancer from returning. This included, daily chemo at home, monthly IV chemo, and chemo administered into her spinal fluid to decrease the chance that leukemia invades her central nervous system.

What now? Starting November 9th Mimi will be going for monthly blood draws to make sure her blood counts are what they should be and that there is no evidence of cancer cells. Later on they will be bi-monthly until eventually once a year for the rest of her life. Along with other routine check ups such as Echo cardiograms, to check her her heart for possible damage caused by chemo.

Sometime soon we will also have a date to remove her portacath which will be another huge milestone!

Also she will be closely watched for any late effects due to the intensive chemotherapy she received over the last two years.

Thank you for being part of our little army whether it was for 5 minutes of the last 2 years, 2 months, 26 days or the whole ride. Thank you for all the shoulders I got to cry on, for taking the Iza and Magi for fun days restoring "normal", for the coffee and tea deliveries to the hospital, for dropping what you were doing because it was a good count day and friends needed to play, for understanding things needed to get cancelled due to low counts, for understanding and for trying to understand... I can go on forever. I am blessed to have met so many people and I hope to continue keeping our little army going as we keep Leukemia AWAY...

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!

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.