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!

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.

Sister Letters.

Mimi has been writing letters. She does them all on her own, I love the funny miss-spellings like "Ee-Chther" meaning each other. Iza has been learning alot also it is so cute seeing them read together, not just eat the books anymore.

This morning Mimi had a tough time going to school, lots of tears in the morning, her ponytails were in the wrong spots. She was not happy going into her classroom but I was told after some TLC from her awesome teacher she ended up having a great day! I think this month of steroids has wore off...

Steroids.

I should have knocked on wood last week when I said steroids are not too bad for Mimi. For the most part she has been okay or maybe I just got better at knowing what might make Mimi explode. This weekend she wasn't really herself... Friday she took a three hour nap after some screaming over little things, Magi was touching her. Saturday was okay while at Six Flags other than being upset she is two inches too short to go on the bigger rides. Sunday we were home all day so she was able to chill but did not want to go Trick-or-Treating with her sisters, instead she wanted to give candy out. This morning she woke up and was so sad, she just laid in our bed. She cried when I told her it's time to go to school. We let her stay figuring she might go in late but she chose to stay home all day. She always wants to go to school so I know she wasn't being herself hopefully she will have a good day tomorrow. She is good at telling us how she feels and explaining her pain but for some reason she was having a hard time telling us what was wrong. She would just break out in tears. It is hard to figure out weather this is a regular 5 year old thing or is it a 5 year old on chemo thing...

Clinic Day (Yesterday)

I took Mimi out of school to take her to clinic in the morning. All went well. Blood counts look good so dosage will ramain the same. We brought munchkins with us and she ate more than she needed to but then again it is day one of steroids so who can blame her. It is funny how the day she takes her steroid pills (dexamethasone) she is in our bed that night and for the remainder of the five nights and then she goes right back to sleeping in her own bed. I don't mind the once a month snuggles.

Counts:
WBC -
Hgb -
Platelets -
Neutrophil - 1300

Neutrophil Dance Worked!

A quick finger prick and counts were in and surprised all of us! The Onc On-call was surprised he did not get a call from us on Tuesday night after seeing her in the morning. Mimi was miserable all day Tuesday and most of Wednesday after the spinal tap. For the most part she has been doing really well while on steroids this summer, but that is not the case this week! She has been getting really upset and hiding in the closet crying. For some reason chose Magi to lash out on, she has been really mean to her an and poor Magi doesn't know what to think of it. Mimi does get in trouble for it just like anyone would but I just try being proactive about it and keep them both happy and away from each other. Hopefully just until Sunday!

Today was the Kindergarten Welcoming Party at school. Since Mimi's counts were way better than Tuesday we were able to go. I won't lie it was a bit emotional seeing Iza and Mimi at their desks with their names. They are so ready and so excited! Now they keep asking how many more days until the 7th.

Counts:
WBC - 1.89
Hgb - 13.6
Platelets - 218
Neutrophil - 1000!

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

Day 3 of Steroids.

Not too bad as far as emotions go but food is very random. I have decided there is no real meal times during "steroid week" for anyone. Mimi just asks for random food at random times. Iza and Magi and all the other little munchkins that happen to be at my house also want random foods. So I go with it. Yesterday I cut up and/or served three apples, 2 cucumbers, everything bagel, a whole cantaloupe, 1/2 gallon of milk, pear, celery, eggs, raisins... I am sure there were other things that I can't recall but all this was between 9:30am and about noon!

On a side note I took Mimi to see our regular pedi to check her foot. She has been walking "funny" on it for over a year now sometimes more than other times but recently she has gotten blisters and tripped on over that foot also. I don't know if it is chemo related issue or just a kid thing but I wanted it looked at. We got a referral of a children's orthopedic so hopefully we will have some answers and/or solutions.

Clinic Day.

It is a million degrees outside, okay so maybe just 103 according to my car, but it is HOT! So other than the clinic we will be staying home for the most part. Mimi got her port accessed, while getting her feet rubbed, got her chemo (Vincristine)and we waited for counts. Which were not so great, but we will continue all chemo and check counts next week to make sure they are going up. Which I really hope they do because she is very excited to go to Six Flags next Friday with everyone from clinic, thank you to Griffin's Friends! Next weekend we are planning to drive to Camp Sunshine in Casco, Maine. So we need good counts! Today is also a start to a five day steroid pulse.

Today's Counts:
WBC - 1.26
Hgb - 11.2
Platelets - 173
Neutrophil - 580

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 :)

Day Three of Steroids.

Not bad. Maybe because we live with a two year old who is a professional at throwing wicked awesome fits. So when Mimi has a steroid induced moment it doesn't seem so bad or maybe I can't really hear it over the two year old. Mimi does have her moments but has done really well being able to control her emotions and being able to talk things over, I am so proud of her.

Another thing, during the 5 day steroid pulse Mimi usually can't sleep too well so at some point during the night ends up in our bed. Normally not big deal but she has been grinding her teeth while she sleeps, the sound of it hurts my teeth! Last night even Magi said "What's that noise??" (Oh yes she somehow made her way to our bed also.)

Clinic Day.

All is well. Counts are good Mimi feels and looks good. Today she also started steroids, hopefully this week will be uneventful. I am crossing my fingers whatever Iza has going on, with random sneezing and coughing, she will keep to herself.

Today's Counts:
WBC - 3.4
Hgb - 11.9
Platelets - 217
Neutrophil - 2400


Random Magi Funny:

Me - "Magi eat your carrots they are good for your eyes."
Her - "MY eyes are BLUE and I like them like that, So I am not eating carrots"

Who am I to argue with this broccoli eating child... LOL

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.

Is this what teenage years will be like?

Poor Mimi is a puddle today.

Nothing is like she wants it to be. Nothing is making her happy. Iza is trying everything to cheer her up but they end up crying together. They were laying in bed this morning talking about old toys and Mimi AND Iza burst out in tears because they miss a stuffed pig. The steroids definitely make Mimi more emotional but one other odd thing I have been noticing is how she remembers the craziest things. She will talk about her past birthdays in detail, things she wore when we went random places and she talks and talks and talks... just don't mention the random stuffed animal! or there will be tears flowing.

I think I will be taking out finger paints after lunch today.

Not so fun morning...

Poor Mimi. I think we have all been spoiled by the normal phase last month. That ended, we will be looking to find another new normal during the next 8 weeks.

This morning I heard Mimi's little feet running to me trying to find a bucket, and again after her self made yellow scrambled EGGIEZ breakfast. She asked for a bath and was a little better for the rest of the day, but definetly very emotional. The steroids are kicking in.

Silly Saturday.

So Steroids are suppose to make kids moody. I am still scared of the "bad" moods, although so far Mimi keeps having giggle fits. Along with her partner in crime Iza they say one word and laugh about it for 20 minutes or more. If you are near by you can't help but laugh along with them.

Today's word of the day was skunk and monkey. I am hoping this continues...

Another mood change she has shown recently is ignoring people and pretending she is shy, this is a VERY odd thing for any of our girls since shy is something they never did. The shy thing only lasts for a bit and them she starts with the giggles. The same giggle she had when she was tiny.

08:15 AM

After a large bowl of cereal Mimi asked for a bowl of ravioli...

(I am thinking OMG!) "Daddy ATE the leftover ravioli last night!"
"It's Okay Mommy I will have some chicken noodle soup"
(OMG #2 That was finished last night too) "We don't have any left"
"Hmmm Can you make me more ravioli with sauce?"
"Anything you want" LOL

So yes I was making Ravioli at 8:15AM And my baby was happy :) Right after her breakfast she took her meds which she has become a Pro at, no issues at all, just a week ago we were both crying and sobbing as I begged and bribed so she takes her medicine.

And now she is asking for a snack it is 9:25 still AM