Clinic Day

I picked the girls up from school and informed Mimi she has a clinic appointment right after. She replied with a loud "Why?! I am done my port is out!" I told her we are just going for a finger prick to check her counts, again "Why?" To make sure your blood is doing what it is suppose to, we will got every month for a while. She seemed okay with that answer but then said "If it doesn't look okay then I have to get a port again? and the hospital?" Iza jumped into the conversation and said "We will just pray and wish your blood is always good!" Yes! Yes, We will!

Mimi has developed a rash sometimes hive looking the day after surgery which seemed to get worse over the weekend but after a visit to the pediatrician's office and a script for Hydroxyzine it seems to be under control. Her stitches look great, they are dis solvable do we don't have to go to get them removed. Everything checked out well so we are good until early January!

Counts:
WBC - 8.
HGB - 12.8
Platelets - 223
ANC - 3700

7!

We have two brand spanking new Seven year olds in the house! We enjoyed a weekend filled with friends, aunties, uncles, cakes, art, music, dancing, hugs and kisses. Thank you for Celebrating with us! oxo

It's OUT!

Mimi was so excited to go into the Operating room, I took a picture of her because it was funny to see a kid so excited. At one point a nurse asked me if she will need anything to keep calm, she looked at her and said "Never mind..." We borrowed Dziadziu's IPad to play with and she got spoiled not with one but two Child Life specialists! It was so great to have them there, Betsy has been with us for a big chunk of this journey it was so nice to have her at the De-PORT-ation. Mimi went in smiling at about 11am and around noon I was called in to post-op to wait for her to wake up. She woke up a bit groggy and with a rash, a reaction to either tape or cleaner they used in the OR but it seemed to clear up. Once she was able to drink and sit up off we went to meet her sisters and daddy who brought what she asked for: munchkins and Big Giant Marshmallows. We asked her if it is weird having the port out an she said no.

Later that night Mimi left a letter to the Port Fairy who also left her a note and a treat for all the girls. Apparently the Fairy got spooked by our dog and since she was flying with the tooth fairy that night anyway she left the treats on the bathroom window where Mimi found them. The girls all got some fancy chap stick, nail polish and what is a fairy treat with out some green money!

BIG day tomorrow!

Mimi's PORT is coming out!

She has known that once she no longer needs chemo the port will come out. She also always said she wanted it out before her 7th birthday. We met with the pediatric surgeon and although he wanted to wait until after her birthday, so she won't be sore for her birthday, she insisted she wanted it before.

Tomorrow, December 1st, Mimi is scheduled in the operating room at 11:30am. She will go under general anesthesia and the surgeon will try to use the same incision they used to insert the port, for minimal scars. The surgery itself should not take more than an hour. Mimi is hoping to keep her port read below to find out why...

"My Port" by Mimi, almost 7

"What is a SuperSib" by Iza

We like to Dance, UDance?

November 20th we attended the UMass UDance a dance marathon fundraiser to benefit Children's Miracle Network (for Baystate Children's Hospital). Last year the girls had so much fun and they were very excited to go again this year. Once they heard the music they were out on the dance floor along with the many college students who were there supporting Children's Miracle Network. The girls got their faces painted, balloon princesses made, ate a whole lot of popcorn but most of all Danced with their new found friends at UMass. All three of them begged to stay "at college" and wanted to do "college homework" I hope that sticks with them until they go!




Thank you UMass students for a great fundraiser and letting us be a part of it and have so much fun doing it!

Iza Mimi and Magi in front of all the students dancing to Wii Just Dance 3.

There is Art in our Hearts.

I truly believe Art was a big tool in for all of us through the last two years, especially for Iza and Mimi. It is a way for them to escape, express, and communicate their feelings. At every hospital stay, clinic visit there was some sort of art being created. Child Life was sure to keep Mimi, along with Iza and Magi when they were visiting, busy with all sorts of activities but I would say the number one request was paint. For the second year in the row the girls participated in the Annual Baystate Children's Hospital Art Show. Betsy (Child Life Specialist) was not kidding when she told us this year it would be bigger and better! It was red carpet treatment, music, lots of smiling kids, amazing art work by artists of various ages. The girls had a great time making some more art while at the show and playing with their hospital friends. We always love to see the hospital staff while NOT inpatient.

Mimi with her artwork "Mimi Healthy" a self portrait in which she is holding a large glass of milk and has fancy earrings on.

Iza's piece titles "Super Sib Iza" It is a picture of her with a mask and a SuperSib cape on, and every super hero needs a palm tree!

The girls with Betsy.

Thank you for such a great Art Show for all the artists, and for healing with art every day.

First OFF Treatment Clinic Visit.

We had so many lasts but today was a first post treatment visit. Just a quick finger prick, some chatting, hugs and smiles from our favorite clinic friends while we waited for counts to come back. I mentioned Mimi's day of nausea last Tuesday although it was all better the following day. It might have been just something random that resolved on its own.

After clinic the girls ran around with some friends and enjoyed the really nice weather at a park. Alot of parks around here are closed due to all the trees that are down after the Halloween Snowstorm. Mimi was complaining of a headache while playing, it must have been pretty bad because when we got home she skipped her favorite dinner and fell asleep before 6pm, I am really hoping she is just tired and this is not a start of something...

Today's Counts:
WBC 2.34
HGB 11.0
Platelets 187
Neutrophils 1250

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...

White Halloween!

On Saturday the three Princesses and I were at the annual Costume Bowl held by Griffin's Friends. Thank you Griffin's Friends and volunteers! The girls always look forward to bowling with our clinic friends every year! This year Iza has shown a hidden talent, she seems to magically make the ball do whatever she needs it to do. She won twice!

At some point while we were bowling big giant white fluffy snowflakes started coming and covering the ground, turning the outdoors into winter wonderland. It was really pretty but also very strange seeing the fall colored leaves covered by snow. Due to the cold and snow the last soccer game of the season was cancelled and so was their schools Pumpkin Festival. Good thing though because winter wonderland turned a little scary, all the heavy snow was too much for the trees that still had leaves, all night we kept hearing branches snapping and trees falling. There were a lot of power outages and power lines down on the streets. We stayed home and when it got too chilly we went to my parents who somehow did not lose their power. Everyone was safe. Monday school got cancelled, Halloween was a day off. Miss MagiBoo got to spend the day with her family and friends, we will always remember her 4th birthday as the Snowy Halloween complete with a SNOWkin made by Toto.

Happy 4th Birthday Magi!!! You are our little Treat :)

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.

Boo at the Bronx Zoo

First we were in MA, then we drove through CT and finally in NY!!! and that is how you get to Bronx Zoo. (a little Dora for you)


Miss Magi wished to go to Bronx Zoo for her birthday (which is coming up on Halloween!) and that is what we did this past Sunday. It was a great trip with Babcia and Dziadziu, we all enjoyed a gorgeous fall day outside. Tigers were on top of the list for a favorite animal, Prairie dogs were most fun, and the skunk got the most reaction out of them, go figure! The Bronx Zoo is enormous, we were there for about 6 hours and did not see everything but not to worry we are now members of the Zoo so we will sure be back to see the rest of the zoo!

Clinic Day.

Mimi and Iza left school a little early today and we headed over to clinic to check counts. Two weeks ago the three of them were a bit "monkey" so I left Magi at home to enjoy some Daddy time. At clinic everything checked out just fine, Mimi has a cough, which matches Iza's, but her lungs sound clear and she is not complaining of anything. Since her ANC is 2000 her weekly Methotrexate dose was increased to 100%.

I have noticed Sundays and Mondays have been a bit tough on her. She takes her weekly chemo on Wednesday, plus Wednesday through Friday takes a bigger dose of her nightly chemo. It catches up with her but she is one tough cookie Monday nights she runs laps around the soccer field during practice. She truly is an inspiration!

We celebrated today with a spontaneous Wednesday movie trip to see Dolphin Tale, now the girls want a dolphin as a pet...

Counts:
HGB - 11.5
Platelets - 222
ANC - 2000

Pumpkins and Apples in the Sun

That about sums up our weekend. The amazing weather had us outside all weekend.

Saturday we enjoyed a big pumpkin carving bash in for Uncle Chris' Birthday. The girls really got into carving!

Some of the masterpieces of the night.

Sunday we drove to an Apple Farm, where we met up with some great friends (Aunties!) The girls bounced around, played on the playground, visited some animals, ran around tasting and of course picking apples. When we had enough we headed over to have a lovely dinner party complete with yummy Apple crisp!

Striking a pose while taking a rest in the shade.

Monday was another nice day we spent with friends at Forest Park feeding ducks and running around. The running continued at soccer practice. All three girls were sound asleep by 7:03 pm, I say it was a GREAT weekend!

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.

Clinic Day.

Mimi had a quick clinic visit today just to check counts and adjust chemo dose. Her nightly 6-MP chemo is remaining at 75% and her weekly Methotrexate is at 75%

She is looking and feeling good.

WBC - 2.56
HGB - 10.3
PLT - 270
ANC - 1190

GOLD Ribbon.

The Littlest Soldiers

The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward

~author unknown

Back to School and Fun!

Iza and Mimi are officially 1st graders! Above are pictures from their 3rd day of school. It rained the first two days and we were all still getting used to getting up early. So far they are loving school and I have not heard any complaints. Mimi was scared to go back to school, she was nervous about getting sick. She understands more than she ever did before, she knows getting sick lands her in the hospital.


The weather turned out beautiful on Friday so we set out on a spontaneous art filled adventure with some friends from school. A local college was holding a Family Art Night, the girls created abstract art from cardboard, it was really fun! Above the streets we saw a couple of hot air balloons that took of from a park near by. We walked around the galleries and searched around for some amazing sidewalk chalk art. Below are some of our favorites.




Later at night on the way home we drove to Look Park to see if the hot air balloons were still there. We drove in to the dark park and out in the field balloons were lighting up one after the other. It was amazing to watch. It was a great night!

Clinic Day.

Just a quick finger prick blood draw today. To check Mimi's counts since she has restarted chemo, since counts came back okay her dose of her nightly chemo (Mercaptopurine) was increased to 100%. Her weekly Methotrexate chemo is still at 50% for now. She is feeling pretty good and bouncing back to herself, whatever this "thing" was it really tired her out.

Good counts + NO Fever = School!

ANC 1900

Mimi DOESN'T have Malaria.

In case anyone was wondering...

Hoping I am not jinxing myself here but fevers have not come back since Wednesday night. I even replaced the batteries in the thermometer to make sure it is working and that the 98.0 reading was correct.

Results from Wednesday's echo cardiogram came back normal. Her heart looks great.

Thursday was another busy day. We started of the day in the Nuclear Radiology department where Mimi received a nuclear injection and about three hours later we were to come back for a nuclear bone density scan. I had all the girls with me, which made Mimi happy to have her sisters with her. They were full of questions to the technician who was really good at answering them all. The scan itself took about 20 minutes, Mimi had to be very still. She did an awesome Job! We looked at the images after and thought it would have been great to get a print out of Mimi's skeleton for Halloween but unfortunately they don't do that. During the three hour wait we went for an appointment with the Infectious Diseases doctor (which really sounds worse than it is) she went over the last two weeks with me, and told me about all the tests that were done on Mimi all of which came back negative. She decided to test for some more one of them was Malaria, highly unlikely but at this point why not just check for everything. I just hope they are GONE. Her counts took a slight dip, probably due to chemo. Her CRP (C-Reactive Protein) is 4 down from 5, so it is going in the right direction.

We might not ever know what caused these high fevers for so long. Hopefully all the WORSE case scenarios were ruled out and this does NOT happen again.

Clinic Day.

Also Day 16 of fevers. Crazy. Still no known source either. I haven't really updated since there has not been much change. I know everyone is trying to do everything to figure this Mimi mystery out and I am very thankful to have such a wonderful team of Doctors, Nurses and everyone else involved in her care.

I joked today and said "Maybe she is just teething!" That used to be my answer to everything from the time the girls were 3 months old until they were 2 years old. I have to joke otherwise I think I would likely just lose my mind.

Her counts are okay, Chemo has been restarted back after being on hold for the last two weeks. Which was also making me nervous. She received her monthly Vincristine through her port and will start on about 50% doses of chemo (Mercaptopurine and Methotrexate) We will see how she handles that. No steroids this month. She is feeling okay but her energy level and appetite is definitely lower. Although having two energetic sisters is like a little energy pill for her she keeps up with them for a bit but knows when to go and take a nap.

This afternoon she had an echo cardiogram done to see if anything might be found. She fell asleep during it so the technician was able to get some really good images. She falls asleep during every ultrasound I think it is the low light and the noise of the computer. We should get some results tomorrow. There are a couple of tests that were done for things like cat scratch disease, salmonella and a ton of others, some have come back and are negative others we are waiting on results. I have learned about a whole lot of viruses the past couple of days.

Counts 8/31/11

WBC 4.03

HGB 9.5

PLT 250

Neutrophil 2170

Good News all around...

Does this look like a kid who has a 103+ fever to you?

Mimi left the hospital Friday with no fever, two hours later she got a fever. I called the clinic thankfully Tylenol was okayed and we were able to stay home unless things got worse. She was running between 99 and 101 all Saturday but acting totally normal. Sunday (today) she was just hanging out but looked flushed sure enough 102. Instead of getting admitted we went to the ER to get counts checked and if they were low we would stay overnight if not we go go home. Her fever got higher (103.4) but came down with some Motrin and Tylenol. Counts came back and they were good! Mimi colored some pictures while she got Ceftriaxone the IV antibiotic and then we were off on our way home. This was a super fast ER visit, 4 hours!

Counts:


WBC - 4.9
Hgb - 10
Neutrophil - 1540!!!

On Friday Mimi's CRP was 8 today it was 4.
CRP (C-Reactive Protein) A high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. If the CRP level in your blood drops, it means that you are getting better and inflammation is being reduced.

We were suppose to get a hurricane today, it was kind off eerie being at home waiting for something bad to happen. The girls are learning about all these different weather conditions and are obsessed with the weather channel. Thankfully all we got was some rain and wind. I hope everyone else is okay.

Important phone calls.

First phone call. Preliminary Bone Marrow results from Tuesday showed NO leukemia!!! It feels like GIANT load of bricks has been lifted.

Pretty much most of Wednesday Mimi's temp was between 100 and 101, ANC is near zero, meaning nothing to fight infection with. I made the call and we were admitted. It is not safe for her to be at home since things can go bad fast and it is still unknown what is causing these fevers. In the hospital she is able to receive stronger IV antibiotics. We got admitted right before 7pm. With the plan to start investigating first thing in the morning. CT scans were ordered for her sinuses, chest and abdomen. The CT scan was to be done with contrast dye, but to get a better picture the dye needed to be injected in her vein rather than her port. So she had to get an IV in her arm, she didn't like it but was a pro! She also drank a "poison" tasting drink before the scan and received another Neuprogen shot. She kind of went through a lot today. We have not gotten any results back yet. But I do know some of her counts have started to come up.

If we were NOT at the hospital tonight we WOULD have been singing our hearts out at the Selena Gomez concert in Boston with Auntie Meg and Eryn. But that was not the case. Some of the awesome doctors, nurses, and child life heard she was going to miss the concert and made some magic happen... Before lunchtime the phone rang, it was a call for Mimi. She was confused at first then just speechless when she realized Selena Gomez was on the other line. It was so awesome of her to call it made her smile. they chatted for a couple minutes and she was so excited to call her sisters to tell them all about it. Iza immediately asked if Justin Bieber was with her also. We were already big fans of Selena but now we HEART her even more! We will be sure to go to one of her concerts next time she is around and I am sure Auntie Meg and Eryn will join us!

Home with Fevers and Neutropenic.

We have been home but Mimi definitely has been tired from whatever has her getting fevers. Sunday she had a fever off and on but was able to sleep.

Monday 8/22 morning we went to clinic in the morning, she seemed okay but a thermometer showed otherwise... 101.3. Her counts also dropped Her ANC 60, not a typo sixty. Platelets and Hgb were pretty normal for her. It was decided to plan on bone marrow aspitation for the next day, to make sure nothing is being missed. Since it was a gorgeous day I drove to the girls' favorite park instead of letting my thoughts get to me. Watching them have blast with friends while feeding ducks was quite therapeutic. No eating after midnight and no breakfast the next day meant large cheese pizza was ordered from the girls' favorite place. They also got to stay up late reading books with Auntie Meghan.

Tuesday 8/23 We waited to last minute to wake Mimi up, that way she doesn't have to think about the sleepy medicine. No fever at clinic, it was so nice to see 98.8. But her counts did not look so great WBC was only 0.99. I am pretty sure that is the lowest it has been. The bone marrow aspiration procedure went as planned, we should hopefully know preliminary results on Wednesday. When she woke up from anasthesia, she received an injection in her arm of Neupogen which stimulates white blood cell production. I hated seeing her cry. When we got home she was a bit sore from the procedure but played some games and read with her sisters. Later at night she spiked another fever, I called the Onc. on call and gave her Tylenol with the instructions that if it gets worse or fever doesn't go away to call back. That was a couple of hours ago, so far Mimi is sleeping fever free.

I will try to get some sleep and stop thinking. I am going to bed hoping and praying her counts bounce back and fevers go away.

• Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
• Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
• Severe neutropenia (ANC < 500) — severe risk of infection.

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!

Rough Night but Lucky Charm kind of a morning!

Mimi did not have a good day or night yesterday. Around 3pm she started complaining of a headache, her temp was in the 99s she fell asleep shortly after. Her temp kept creeping up while she slept despite the Tylenol. My parents were here while she slept I took Iza and Magi out since they needed "normal". They have been doing really good but yesterday Magi had enough I think she showed everyone that with a loud three year old kind of a tantrum on the way out of the hospital, she got a little better with some mommy time. I came back to the hospital around 9pm and Mimi's headache got really bad she looked miserable, I watched the thermometer as the nurse was checking it 102... 103... 104.1! This was after Tylenol and at that point Motrin was given too. Usually Motrin is not given since it may cause platelets to drop, but it was okayed as a one time last night. I was rubbing her forehead since that helped her headache and was putting wet wash cloths on her. Finally at 3am, twelve hours later, her fever went down It was nice to her a number less than 99.

This morning at 8am it was SO nice to see her smiling face asking for her Lucky Charms, a rare treat. Uncle Victor just came to drop the girls off and they are all chatting away. Love these monkeys!

Not sure of the plan today but soon we will find out... I will update when I know. I am pretty sure we will be here tonight since these fevers keep coming every afternoon. Thank you for all the love & prayers!

Counts
8/18 - WBC 1.6
ANC 1300

8/19 - WBC - 2.6
ANC - 2300

Update

1pm. During a craft before lunch she spiked a fever of 103.2 with a headache and a blotchy rash on her neck. She got a dose of Tylenol with Codeine, once that kicked in she is feeling much better.

5pm Fever still here, headache came back, she vomited (probably due to Tylenol/Codeine) so the "big guns" came out Morphine along with Zofran and Tylenol. She is resting comfortably and said her head doesn't hurt as much.

One more night.

Darn fever came back again around 5pm, 102 point something... Still no known cause. All tests and ultrasound came back fine.

All the girls were here playing this afternoon, doing some painting and playing out on the playdeck. We were also keeping child life hostage in our room, Thanks Betsy! Magi left with Daddy while Iza and Mimi had some quality time snuggling and watching Pippy Longstocking.

6:15pm Fever still here. Tylenol is not doing what it is suppose to...

Chips and Salsa Cart Needed...

So we were kind of bored this morning, and decided the hospital needs a chips and salsa cart, and guacamole, along with IPads for everyone and a RedBox :) oh and also kittens.

Miss Mimi had a fever during the night of 102.7. Another set of blood cultures was taken. The blood and urine culture taken when we came in Monday night came back negative so still no known cause for the fevers. She was NPO, (meaning nil per os Latin for nothing by mouth, a little trivia for you today) she had an ultrasound of her abdomen, the gallbladder area, since she had some pain in that area when we initially got admitted. So now we are just waiting around to hear the results from that and what the plan is for the day.

Counts:

8/15 - WBC 2.0

ANC 1300

8/17 - WBS 1.8

ANC 1000

Monkeys hanging out...

Hey where is Perry!

Intrerrupted by a Fever.

Last night out of nowhere Mimi got a fever, of 102.7. She did complain of a random stomach pain through out the day but no other issues. With the fever came shoulder pain and leg pain. We got admitted around 10pm last night. She was NOT happy about missing a movie with her sisters but knew she was going to the hospital. We got here her fever kept creeping up, half hour later the Tylenol kicked in pain went away and we both fell asleep and slept through all the vitals.

This morning she woke up and was quick to request Fruit Loops and pancakes. So she is feeling much better but we are here for another night. Random fever means waiting 24 hours for blood cultures to come back. Her liver enzymes are also elevated so that is being checked out.

Iza and Magi are playing with their friends, Thank you Jess for taking the monkeys. They will probably come by later tonight. Mimi has painted pictures for them, now she is watching Soul Surfer the movie she missed last night.

We had a wonderful time at Camp Sunshine last week I will update out vacation with pictures later this week.

I say SUN you say SHINE!

Sunshine!

CAMP

SUNSHINE!!!

On August 7th for the fourth time in the last 12 months we made a trip to Maine. Auntie Tracy The weather forecast did not look promising at all, our drive was gray and rainy. But like magic the clouds started disappearing the closer we were getting to our destination and when we parked to check in the sun was out! Magic of Maine!

The girls made friends instantly with other kids and counselors, we also saw some friend from our previous visits. As always the week was filled with activities and adventures. Iza and Mimi's highlight of the week was probably fishing on a boat with Master Bass Fisherman, they both caught fish! They loved it! Lots of swimming, crafts, playing on the lake, just being kids and having fun.

While the kids were enjoying their activities adults had a fun schedule too. It is always fun to play really silly games and just relax. Sessions are always filled with knowledge, inspiration and hope. As we get closer to our off treatment date I always wonder about long term effects. I met a wonderful girl many years off treatment who gave me so much hope, she has survived cancer and never let it stop her from achieving her goals in life. Naturally Iza and Mimi glued themselves to her and talk about her often, I am sure her phone is alerting her with texts from the girls. I try not to dwell on the effects of chemo but knowledge is power and it is always better to be prepared. I met parents who have kids in various stages of treatment as well as years off treatment, all of us in a club we don't want to join but so glad a place like Camp exists and we can come year after year until one day there won't be a need for this "club".

The girls out on the porch enjoying the fresh Maine air.

Tracy acting, while Mimi reads the poem Sick by Shel Silverstein. During the Talent Show. Magi slept through it and Iza was not feeling to well and missed it also.

Magi during the masquerade ball, I think she went through about ten different costumes.

This was Ballerina turned Unicorn.


Wish boats. A special night at Camp.

All the kids make a wooden wish boat and while a song plays

they release them out in the water and make a wish.

The door Picture.

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 :)

Raw Emotions

It is August. I am not sure when I will NOT think back to August 2009. I find myself going back and remembering everything in detail from mid July when Mimi was complaining of random arm pain, not wanting to walk while we were at the zoo, looking pale, all these things... Once thought What if I got it checked earlier? Why did I ignore it? But now I know that this disease just comes camouflaged under regular kid things that I would not normally call a pediatrician about. But every time Iza or Magi get a random sickness I go there... What if? That is what this journey did to me I no longer look at regular kid things regularly.

This past weekend when all the girls got sick I was glad all of them were the same kind of sick, but I flash-backed to two years ago when they were all sick the same way but Mimi was just worse off. I guess the good thing is Mimi doesn't really remember much about the worst of it. I hear Iza and her talk sometimes about the first inpatient stay when we got her diagnosis: "remember when your butt hurt and you went to the hospital", "we got to cut our hair" and about "all the mail that came to the hospital" they don't remember Mimi's screams from pain that required morphine to be administered around the clock, or me crying all night every night not knowing what the future held. They can have the pink and fluffy memories, I will take all the bad ones!

Alot of these thoughts came tonight as today we found out our friends' daughter is in the hospital awaiting further results to find out what type of leukemia she has. My heart breaks for them as they start this fight but I know that little girl will fight and kick this thing in the butt! Please keep this little girls in your prayers tonight.

Neuropsychology Testing

Long day for Mimi today. At 8am this morning we met with a Pediatric Neuropsychologist, while Mimi went off to do some tests I spoke with the Dr. about her medical history, which was pretty clean until two years ago. Mimi worked hard until about 2pm with a couple breaks in between. She said she listened to stories and had to remember what they were, couple math problems, and some pattern making. She really enjoyed it and said she could have stayed longer. I will meet with the Dr. later on this month to discuss the results from today.

Why the Neuropsych testing? To assess the effects of treatment, mainly the Methotrexate (chemo delivered to spinal fluid) on the child's cognitive functioning. Children who have gone through treatment suffer from late cognitive effects from the chemo, having a baseline test done now will give us something to look at later on if any problems should arise.

Tomorrow will be another full day as Mimi goes in for a spinal tap in the morning. She was not very happy so she requested a great dinner favorite take out pizza from Italy's Best plus some friends and felt a little better about having to be hungry tomorrow. She also requested doughnuts after she wakes up from her sleepy medicine, we will see about that maybe I will surprise her.


Below are some articles that go more in depth about the testing in pediatric patients.

• Neuropsychological testing

• Intellectual, Neuropsychological, and Academic Functioning in Long-Term Survivors of Leukemia

• Feasibility of neuropsychological assessment in leukaemia
  patients shortly after diagnosis: directions for future
  prospective research
  

One puke... Two puke... Three puke...

That was our night last night. Iza started the night not feeling well, Mimi advised her on what to do when she is feeling nauseous. Poor thing was running to and from the bathroom with a bowl. Shortly after midnight Magi woke up came out of her room and said she needs a new place to sleep since she has puke on her bed, and apologized for not knowing she was going to get sick. So far at 2 am I was hoping this will all magically skip Mimi. Not so much, 3 am she was right in the bathroom with her sister by her side accompanied by a fever... I made the phone call to the PA on-call. I was VERY thankful for not having to go into the hospital in the middle of the night, while two other kiddos are sick at home and needed me.

So no one has really slept last night, everyone is camping out on the living room floor in of the TV. Mimi and I will head over to clinic in a minute so she can get her counts checked, blood culture done and receive some antibiotics.

Update: Back from Clinic. Mimi got an antibiotic (Ceftriaxone) Her counts came back really good so we got to go home and relax. She still had a slight fever while at the clinic but since everyone has it here we know the cause of the fever. It is an over cast day so we will all just relax at home and re-cooperate after not sleeping all night.

Counts:
WBC 4.8
Neutrophil 3800

We HEART Child Life Specialists

Today's paper had a great article about Child Life Specialists and how much they help not just the patient but also the siblings. All three girls were photographed along with Betsy and the portacath doll. I know all three girls benefited from being able to play in the hospital, whether it was singing, painting, coloring, movies galore, computer games, Kyle's magic bubbles, bead making... gosh I can go on an on. I know as a parent I benefited also I was so happy that someone was there to have fun with the kids while I was able to "recharged my batteries".

Please read the Article below:
Childlife specialists ease the trauma and pain of a sibling in the hospital

Clinic Day (yesterday)

I had to carry Mimi into clinic yesterday she said her stomach hurt again. No temp, counts were okay, although ANC was a little on the lower side for her. She has had a lingering caugh for over a week not it has gotten junky in the last two days, as a precaution Mimi got a chest Xray, I have not heard anything back from that yet but usually no news is good news. Later that afternoon she was acting like her regular bouncy six year old self.

Counts:
ANC - 1000

Six Flags... More Fun!

We were all very exited to visit Six Flags for the annual Griffin's Friends Picnic. We started the day with lunch with some of our clinic friends and off to the park we went! The girls grew a lot since last year and were able to go on most roller coasters, they were SO happy! So was I since I get to enjoy the speedy, twisty, and thrilling rides with them now! The only unhappy kiddo was Magi she tried so hard to stand on her tippy-toes to get on the big rides, to keep her happy she got to go on her sized rides and got some extra treats from daddy. It was a fun long eight hour day at the park! Thank You Griffin's Friends for keeping us happy!

A Rather Lengthy Update.

We have been quite busy with fun summer happenings, work, plus our computer at home is being invaded by viruses so it has been hard to get around to update.

Since the last update Mimi was having a lot of stomach issues with every meal, so mid June she started Famotidine (acid reducer) daily and it seemed to help significantly. She is able to finish meals rather than before she would take a bite or two and not be able to eat complaining of stomach pain. She is also still staying away from milk and using Lactose free products.

June 22 Clinic Day. Counts came back pretty good and there were no issues to report or changes made to does of chemo.

July 1st Mimi helped out Dr. G with teaching new residents. She was "modeling" for a "fake" spinal tap (her words.) On a hospital bed and was positioned and prepped for a Spinal puncture, minus the needle and the anesthesia, after Dr. G did his part of explaining, each resident felt Mimi's spine and prepped for the procedure. The were all very nice and thanked her for letting them move her around. She really enjoyed it and later told me she though it was neat that now she knows what happens while she is sleeping.

July 6th Clinic Day. Counts were good, she received her Vincristine through the port and that night started the steroid pulse. It was a rough couple of days, she was very moody, there was a lot of book reading in separate corners but we made it.

July 12th Unscheduled Clinic Visit... Over the weekend Mimi was compaining of stomach pain, which usually comes with steroids but on Monday night through Tuesday morning she did not sleep and was getting progressively worse, around 7am I called the clinic. Never any fever at that point. In the morning I took her and her sisters to clinic to get her checked out, she was miserable. She was sleeping and not amused by anyone which is NOT like her, I knew she was not well. Dr. R thought 1-appendicitis 2-constipation 3-UTI. We stayed at clinic for about 3 hours she got fluids and we waited for blood and urine results, I was so proud of Iza and Magi they were so good sitting and quietly entertaining themselves while Mimi slept. At noon we went over to the main hospital for an ultrasound to check out the appendix, at that point Dan came and took the girls to get them a snack in the cafeteria. Mimi slept through most of the ultrasound which was reasuring that the pain went away and her appendix was just fine. Later we got a script for 10 days of Ciprofloxacin and and her symptoms went away within 24 hours. She was well enough on Friday to be a dare devil with Iza at Six Flags!

We Walked the Walk :)

What a great turn out!

50 + members joined our team and helped to raise money while having fun at the park.

We got up bright and early got on our purple sock monkey tees, socks, bandanas and whatever else purple we had. Purple umbrellas were also packed since the weather was a bit iffy. We got to the park and joined our team members, it was so great to see everyone! I wish I was able to talk to everyone more and thank them for coming to support The Purple Sock Monkeys. The miracle children were given giant red buttons so everyone could identify them as a miracle child and at the end of the walk they were given a medals of honor. Check you the Video Six Flags posted on their Facebook page, you can spot some of us!

This year as a team we raised $4,453.00, although that number will be higher since Mimi received donations from school that still need to be added to the total. All contributions will benefit our local Baystate Children's Hospital a part of the Children's Miracle Network and go to help save and improve the lives of as many children as possible!

A special Thanks to the following companies who contributed to The Purple Sock Monkeys

Callaway Employees
Frito Lay Northeast Region Employees Fundraiser
Phonon Corporation Employees
Balise Lexus Employees

Below are registered walkers, Thank You for getting up early in the morning and supporting a great cause. We hope you had fun!!!

Janet Beauvais

Adrianna Carabetta

Audrey Carabetta

Bill Carabetta

Jessie Carabetta

Andre Chapdelaine

Marcella Chapdelaine

Megan Chapdelaine

Hannah Fields

Jessica Fields

Steven Fields

Carol Fields-Scott

Katie Fike

Clover Fortier

Andrew Hanson

Nichole Hanson

Erica Iorillo

Shannon Jackson

Jozef Janczar

Meg Janczar

Victor Janczar

Zyta Janczar

Janina Jarmuzewski

Mario Jarmuzewski

Elena Langdon

David Lapierre

Emilia Lapierre

Eugene Lapierre

Izabella Lapierre

Linda Lapierre
Linda M Lapierre
FRITO LAY
Eryn Mathews
James Mathews
Pat Mathews
Jordan Nagy
Ela Osowiecki and family
Tracy Paulo
Isabel Puppolo
Julia Puppolo
Olivia Puppolo
Mary Romano
Kendal Sowa
Paul Sowa
Chris Streeter
Margaret Streeter
Owen Streeter
Megan Teser
Mina Valego

Respiratory Therapy.

May 1st, while inpatient, Mimi got her first Pentamidine isethionate, it is used to prevent and treat Pneumocystis carinii pneumonia, a very serious type of pneumonia. This medication is inhaled through a special breathing unit called a nebulizer, which helps the drug travel deep into the lungs.This is something she will do monthly instead of Bactrim, Dapsone or Mepron since she seemed to have side effects/sensitivities to all of these antibiotics.

Today (6/10) Mimi stayed home in the morning and we met with a respiratory therapist RN . Mimi was a bit anxious and not looking forward to her treatment but all that anxiety pretty much dissapeared about five minutes after she met Respitory Rick, she was chatting up the storm asking a million questions. We went through all the necessary paperwork, her vitals were checked. He explained to her what he will do she listened to instructions and followed them like a pro! First she used the albuterol inhaler, it works by relaxing and opening the air passages to the lungs. Then an oxymeter was hooked up to her earlobe to check her oxygen level and pulse, Pentamidine can drop oxygen stats. She used the nebulizer to breathe in the Pentamidine for about 25 minutes. Since the medicine is a mist she is breathing in and it is also going into the air in the house we wore mask but Magi spent some time upstairs so she was not exposed to the medicine. Her treatment went smooth we said bye to our new friend until next month and back to school she went!

Here is Mimi with her glowing ear, the white mist is the medicine. She is sitting next to the window with the fan blowing out so most of the medicine goes outside instead of the house. She sat very patiently for almost a half hour, just listening to stories since she couldn't talk.

Clinic Day and Summer Concert.

The girls' school had a summer concert scheduled for this afternoon, a couple of days ago I overheard Mimi talking to Iza about giving her part away to someone else since she won't be around because it is clinic day. I explained to her we can always try to work around to make sure she can do fun things. We called clinic and they switched her appointment to the morning, Thank you!!! She was very happy that she could do her "snort" part with Iza during the concert.

Clinic went well, today was Vincristine day so Mimi got her port accessed blood drawn and chemo administered. We discussed her recent headache (Tuesday morning) She seems to have random headaches that do go away when she rests. All her counts came back good, she looks and feels fine. Today we start steroids, so I will be keeping Magi and Mimi away from each other...

Counts:
WBC - 2.4
Hgb - 11.0
Platelets - 203
Neutrophil - 1400

Doing their part in the concert.

6 1/2

Happy half birthday! In 6 months I will have a set of 7 year olds! Seems crazy, a good crazy. The girls celebrated by bringing muffins and cookies to school.

Crazy is also one of the words to describe yesterday's weather happenings. It was hot, humid and unbearable, with warnings and alerts of tornadoes, that I am sure a lot of people dismissed at first. Tornadoes is not something we worry about here, snow storms are more our thing. When I came home around 4:20 everyone was cranky due to the heat. We decided to go out for dinner to support “Allie’s 5 O’Clock Fund” Right before we were to leave My mom called to put the TV on, I could not believe what I was seeing, live coverage of a tornado going through the highway and crossing over to downtown Springfield which is just miles from our house. We made sure everyone we knew in that area was okay. It looked like the weather seemed to calm down, so we did go out to dinner, sounds silly now. The weather got bad again we waited it out while eating dinner, the kids were distracted enough in the loud restaurant that they did not seem too scared at the time. When we returned home and everyone had a hard time falling asleep, including me thinking of our friends who were effected by the tornado.

SUN is here! Clinic Day

It was so nice to be out in the hot sun today! I hope this weather is here to stay a while.

Mimi had a clinic visit today, Iza was very excited to accompany her sister. Everything checked out pretty good. I am pretty sure that she in fact is lactose intolerant, I am blaming it on chemo. Since she stopped having milk she has not once complained of feeling pukey or having any other GI issues. It is so nice to have a happy kiddo back!

Counts came back fine, neutrophil count was on the higher side so her MP6 (Mercaptopurine) nightly chemo pill dose was increased. It has been long since she has been on 100% of her chemo dose, I just hope her counts don't go crashing down. Think Positive!

Counts:
WBC - 5.5
Hgb - 11.9
Platelets - 218
Neutrophil - 3700

To Go or Not To Go...

We chose TO GO.

Mimi has had a "blah" week... A whole lot of nausea, belly aches, and just being tired. All week she has been taking anti-nausea Zofran pretty much around the clock. On Friday I got a call from school that she was not well, when I saw her I thought "Here goes the weekend!" But the sun came out shining and Mimi woke up Saturday morning totally fine and ready for fun! We headed East on the Mass Pike to visit Auntie Tracy. Yummy lunch in the sun, feeding ducks, geese and seagulls, movies and a sleepover. Sunday we went to the Museum of Science in Boston, we can't wait to go back and see the rest of the museum. A visit to see our favorite people in Boston was a perfect way to end a great weekend. Happy Birthday Eryn!

On a side note, I am not sure if Mimi has some kind of a milk sensitivity/intolerance. I have been noticing she doesn't feel good shortly after she has milk and this weekend she did not have any and did not have any stomach related issues. I am not sure if it is just a coincidence... I will see how this week goes.

The birds like left over burritos...

Iza and her "pasghetti" made from chains that stuck to the large magnet.

Mimi and Cake

Magi keeping her teeth clean!

Dino!!!