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...

Procedure Day. Countdown is on.

So it was a big day. LAST Lumbar puncture, LAST time that Methotrexate was delivered into Mimi's spinal fluid.

She did not think of it as a monumental day, which I guess is how she has gone through most of the treatment she does everything that is asked of her and does it most of the time with a smile on her face. We waited quite a while for our turn to go to the procedure room but she kept busy coloring and reading.

Once we got into the procedure room, she got comfy with her purple blanket, stuck her finger up in the air for the O2 monitor, asked not to be surprised with the "white sleepy medicine" (propofol, she likes to know when it is coming) and she was out. I gave her a kiss and let the Dr. do his thing. Everything went well, I was called back to the recovery room to wait for her to wake up. She took one very long nap, over an hour after the procedure, we could not get her to wake up. Magi and Iza came with Daddy, when Magi leaned over to kiss her she woke up is was super sweet! Sisterly Love :)

We went to get some lunch since Mimi was pretty hungry at that point, pancakes were requested! And that is how we started out LAST 5 day steroid pulse (Dexamethasone)

Best Part of the day??? This script Below!

Mimi may have her port removed after 11/6/11!!! This one she is excited about! She really wants to have it out before her 7th birthday we hope we can make that happen!

Tomorrow Last Lumbar Puncture.

Mimi's Last Lumbar Puncture is scheduled for tomorrow morning. She has had many of them but knowing that your child is going to be sedated and a giant needle is going into her back delivering chemo into her spinal fluid never gets easier. She ate all her dinner and breakfast food tonight since she will be unable to eat in the morning. Iza (the SUPER Sib!) asked if she can stay home from school tomorrow so she can be with Mimi.

Routine Clinic Day.

We have been keeping quite busy the last two weeks. The fall season started with some summer heat and we made sure soak in all the sun before it gets too cold! The girls have been playing and loving soccer, it is so great watching them run around and enjoy being on the team. Miss Magi has started a mini pre-school just one day a week for a couple of hours but so far she loves it, her and her buddy Norah are now Big Girls!

Mimi was due for her monthly Vincristine today so she got her port accessed, blood drawn, chemo given. Mimi was seen by the PA, everything looked good, no complaints. She also mentioned we only have one more Spinal Tap before is off treatment! This is scary and exciting all at the same time...

Counts:
RBC 10.4
ANC 1800

Since I had all three very giggly girls with me I don't remember all the counts because I ran out of there pretty quickly. I did receive a phone call later on that day to increase one of her chemo doses to 100%. Mimi also started her Steroid week. She was an emotional a mess tonight, she was just sobbing over everything but decided on her own to go to bed early, she is currently sleeping in my bed.

Busy day ending with Discharge!!!

Mimi went to bed with no fever and almost no headache, around 4am I felt her hand on my cheek it was on fire, I wanted to cry. Sure enough 102.5. Although this time around Tylenol kicked in pretty quick and she went back to sleep until 10am. And that s when Dr. R came with a plan for the day. First chest x-ray, which showed some/possible pneumonia. Next Spinal Tap to check if these fevers and headaches are bring caused by viral meningitis, or not likely but leukemia cells in her spinal fluid. Since Mimi had not eaten anything this morning we were able to do it around lunchtime. She was not happy about and proceeded to ignore everyone that tried to talk to her. The spinal tap went well, she came back to her room where a giant purple monkey balloon was awaiting her, she found it quite funny, Thank you Momo!!! She also had a note from Auntie Meg and Chris. So we watched some Disney and waited for some news. And....

WE ARE GOING HOME!!!

Her spinal fluid showed no signs of meningitis. So the headaches were probably caused some other virus or the high fevers. She is going home with two different antibiotics for the pneumonia and something for the headaches in case they come back. We will find out about any other tests done on the spinal fluid during the week.

I can't wait to go home to all the Monkeys, Mountain Laundry, City of Dishes, Land of Toys and Adventures of Grocery Shopping. Home Sweet Home!

Her shirt says SEA YOU LATER!

Thank you for all the sweet messages, prayers and love <3

Be Monkey!

Clinic and Procedure Day

Mimi got her port accessed, blood drawn, and monthly Vincristine administered. She got examined my a med student and Dr. L, other than this lingering junky cough and random knee pain (I think six year old random) she looks and sounds good.

Phone pic: Mimi and Bailey right before sleepy medicine...

Then we waited to be called down for the procedure, lumbar puncture with inrathecal chemotherapy. We waited quite a while before another little kiddo went before Mimi, she got a bit nervous (so did I.) No matter how many times you do this it is always scary when you think about it, your child laying asleep while a giant needle goes into their spine... She did go in around noon, poor thing was starving, everything went fine. She was awake ready to come home, yes with a stop for a dounut. Although she is so wiped out that she wants to cuddle and is sitting on the couch with her sisters looking at her long awaited treat... We will just chill out at home and take it easy today.

Counts:
WBC - 2.3
Hgb 10.9
ANC 1300

Please keep our friend's daughter in your prayers as she starts her battle with leukemia with a huge army behind her! Mimi made sure she had something purple with her today :)

Clinic Day

Counts have gone up since the weekend ANC went back up to 1300 so of to procedure (spinal tap, intrathecal chemotherapy) we went. Mimi was not overly happy about the sleepy medicine but handled everything like a champ. As always took her a while to wake up, but once she did she wanted food, a warm blanket and to go home.

Clinic Day.

It was a quiet day at the clinic, I think most of the world was shopping or sleeping in after big dinners the night before. Magi and Iza slept over my parents house so this morning after Daddy went to work Mimi and I slept in until 8:40, clinic was at 9. She was not happy about getting the sleepy medicine today so I figured the longer she sleeps the less we need to think about it. She woke up and asked for breakfast and quickly realized she can't have any. I quickly made her think of something else, I told her she can bring the camera to clinic and we can make a book about procedure day. She was very excited, I will be sure to post it when our book is done.

Counts were on the lower side, so 6MP (Mercaptopurine) dose is reduced to 50%, Bactrim (antibiotic) on hold and going back for counts on Wednesday. This past Tuesday during gym Mimi told me she was running around and her chest hurt, once she rested it was better. Since this is the second time this has happened on Wednesday she is scheduled for an echocardiogram and a EKG (electrocardiogram.)

Everything went well with the procedure (Intrathecal chemotherapy) the two anesthesiologists were really good with Mimi they took time to talk to her and showed her what all the machines in the procedure room do. Today she chose to watch as the white sleepy medicine (Propofol) was injected into the IV but got upset that it was gross. Sleepy head woke up when I told her it is time for lunch, her choice Subway!

Today's Counts:
WBC - 1.65
Hgb - 12.4
Platelets - 193
Neutrophil - 550

Not so Happy. Clinic Day.

Mimi woke up this morning very tired, sad, just "blah" it didn't really get any better while we were at the clinic she looked like she might be getting a fever. Her heart rate was fast, which usually indicates a fever coming. Counts came back and her ANC is pretty low. Nightly chemo pill (mercaptopurine) on hold until further notice. Five day steroid (dexamethasone) pulse is still happening starting today. She had blood cultures taken at the clinic just in case we end up admitted for fever. Since todays Spinal Tap is not count dependant she still got it, everything went fine.

We packed up the and came home for lunch. Mimi ate and drank a bit and has been on the couch watching the food network. I am crossing my fingers that ONE we all sleep a home tonight instead of the hospital and TWO when we go for counts on Friday they are well enough to start school on the 7th, they need to be over 500.

Mail came today! Mimi's backpack came in, Iza's came last week. Also some fun school accessories for all three girls from Auntie Sherri and Uncle Joe :) Thank you!

Counts:
WBC - 3.17
Hgb - 12.5
Platelets - 212
Neutrophil - 200

Clinic Day.

Long day at the clinic, but with some friends who are also waiting time went by fast. On procedure days the youngest kiddos go first, since Mimi was the oldest today she went last. She was a little anxious about getting anaesthesia but between making pictures and getting a "spa" massage along with her friend A she didn't have much time to think about it.

All went well during the lumbar puncture although she got upset right before she fell asleep, the anaesthesiologist thought he could just get the meds in her IV without her noticing but she got pretty mad. Not to self: Let her know it is coming...

It took Mimi forever to wake up, I always get so worried, finally I just sat her up and we talked about food and that got her eyes to open up. We got home right before 2pm and she slept until about 6pm. When she woke up she was mellow and complained of back pain and nausea. It is 9:30pm right now and she is just hanging out in my bed, I suspect she will be sleeping shortly.

Today's Counts:
WBC - 2.02
Hgb - 11.9
Platelets - 192
Neutrophil - 960

Today started Round 2 of Maintenance therapy (84 day cycles.) Same meds just increased doses, I am hoping for no count crashing or fevers, hope with me!

I just found this on my camera. A couple of days ago is was taken by a couple of cute five year olds :)

Kindergarten will start...

September 7th!

Today Iza and Mimi got to meet their soon to be Kindergarten teacher. Iza has met her before during open house, and has been telling Mimi all about her, today they both got to chat with her. They did some flash cards with numbers and letters, colors, shapes, wrote their names and of course colored. Mimi was funny when we were walking home she said the teacher only asked her to count to 20 but she could count to 400!

I am nervous and excited all at the same time for many reasons. We will take things one day at a time and for now just fully enjoy the summer before I have to see my big girls put on uniforms and go off to school!


Tomorrow is Clinic day, no food or drink after midnight, since it is procedure day (Spinal Tap). Thankfully we are going in for 9am so Mimi should not be too hungry in the morning. She has been a bit anxious about the "sleepy medicine" but I think everyone has done a great job this weekend to keep her mind occupied with other things.

Yuckies...

Poor Mimi had her first case of nausea for most of Friday.

Everytime an alcohol wipe was near her (they use it to clean off her "tubie" to insert her fluids or meds), everytime anyone came in with freshly washed hands in antibacterial soap, and to kicker was the "sleepy medicine" going into her port. She always said she can taste it in her mouth right before she falls asleep but this time it made her vomit. (sorry for TMI!)

Her Spinal Tap went fine and it was pretty quick so we were home by noon. Some people asked why Mimi keeps getting Spinal Taps.
Here is why:
Intrathecal (Spinal Tap) chemotherapy, methotrexate, is also given into the spinal fluid for at least 4 doses, each separated by a week. This chemotherapy helps kill any lymphoma cells in the brain or spinal cord.
I found this site to be neat (Mimi likes to see why she gets things done) http://spinaltap.starlightprograms.org/003.swf

Friday's Happenings (Updated)

This Friday went much smoother even with a major delay due to a malfunction of some oxygen machines... something you always want to hear that the oxygen "machine" is not working properly. We got to clinic for 10am but Mimi did not go into the procedure room for her Spinal Tap until around 1pm! She did awesome though she got lots of art done, played some video games and had some visitors even Sarah who talks with her hands and talks to Aladdin! ;)

She will be going for Spinal Taps every Friday for the next 3 weeks and started a new pill daily. I will update with the exact study she is on when I get back to the computer. MagiBoo just got into soap...

Title of the project/research study AALL0331
Standard Risk B-prosecutor ALL
Part II - Post Induction Intensification
She was chosen randomized into the standard treatment arm (SS-IV) which will last 4 weeks.

Drugs:
Mercaptopurine (daily pill for 28 days)
Vincristine (IV push one time on day 1)
Methotrexate (intrathecal administration, spinal tap days 1, 8 and 15)
She is also getting her antibiotic three times a week two times a day.

Blood counts and stuff.

We are still without internet at the new house so I am just now updating.

Yesterday was clinic day. Mimi did not have a good morning over there, she cried while she got accessed she said it hurt alot, she was starving, it was raining... The only people that got a smile out of her were her Dr. (who she LOVES!) and the lady who rubs her feet (massage therapist who comes into the clinic). She had a Spinal Tab and another Bone Marrow. We should have results early next week. The procedure went well and after waking up from her "sleepy medicine" she ate her Sun Chips and Butterscotch Oatmeal Cookies all the way from Nana and Pops from Florida! She thought it was very cool to get cookies in the mail.

Blood Counts from Friday:
WBC - 14.6
Hgb - 11.7
Hct - 33.1
Platlets - 220