Mimi. Kicked Cancer.

Kids Helping Kids.

2012-01-25T20:17:00.009-05:00

This year Iza, Mimi and Magi have signed up to be Change Heros to collect change in their jars to help out Baystate Children's Hospital which is part of The Children's Miracle Network. The girls are very excited to be collecting change and helping kids! So if your purse is getting heavy with change, the car is getting cluttered with change, you have no idea what to do with your change... The girls will take care of it for you and donate it to a great cause!!! You may also Join our team and become a Change Hero yourself!

Fundraising Page:
Team Purple Sock Monkeys

MARK YOUR CALENDARS TO SUPPORT LOCAL KIDS!
Thursday, Feb. 16...6AM-7PM (We will be on air around 12:30)
Friday, Feb. 17...6AM-7PM (Our cancer fighting buddy Momo will be on!)
Saturday, Feb. 18...8AM-4PM

We hope you'll join us and the 94.7 WMAS crew for these three incredible days when children and families share their stories, laughter and tears. Since its inception in 2002, the Radiothon has raised over $1.7 million for pediatric and adolescent care in western Massachusetts. With your help, we can reach our goal of raising $200,000 this year! A BIG THANKS once again to the whole crew at 94.7 WMAS for their continued support of this event and Baystate Children's Hospital! And, thank YOU for YOUR support!

Good Counts = Earrings!

2012-01-04T21:00:00.005-05:00

After school today Mimi had her monthly clinic visit. It was funny on the way there she asked me if she could just do a finger blood draw... until she realized that her port is not there anymore. Over the last month she had random headaches, some achy legs in the morning and sometimes I might have a mini panic attack but I realize she is just more aware of her body than an average seven year old. I can also relax by tracking back the leg aches to playing Just Dance on the Wii. One issue she has been having since her port has been out is rashes, very itchy all over her neck and upper torso. I guess according to some cancer moms it is not uncommon to have rashes off treatment. Her pediatrician decided to treat her for scabies, although it didn't really look like it, but it seemed to calm down. Now she has eczema all over her hands and arms, Iza has had it before also I am pretty sure if it wasn't for the steroids that Mimi has been on for the last 2+ years she would have had eczema sooner. We can deal with eczema.

So... never boring around here!

Counts came back GREAT! Mimi was quick to ask "So NOW can I get my ears pierced???" Answer was yes so we headed over to the mall to do just that. The woman doing the piercing was really nice explaining to her that it will be a needle going through her ear and it might hurt a little, to which she replied she isn't afraid needles. This was a "fun" poke for her! She picked out super cute magenta flower earrings.

WBC - 7.2
Hgb - 13.1
Platelet - 204
ANC - 2900

A Thanksgiving Hike

Clinic Day

2011-12-07T22:11:00.005-05:00

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!

2011-12-03T21:57:00.000-05:00

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!

2011-12-02T22:00:00.003-05:00

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!

2011-11-30T22:00:00.002-05:00

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?

2011-11-22T22:00:00.001-05:00

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.

2011-11-18T22:30:00.002-05:00

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.

2011-11-09T21:57:00.003-05:00

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.

2011-11-06T22:00:00.002-05:00

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!

2011-10-31T22:00:00.004-04:00

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.

2011-10-25T22:00:00.000-04:00

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.

2011-10-24T21:33:00.005-04:00

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

2011-10-24T21:06:00.008-04:00

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.

2011-10-12T22:46:00.004-04:00

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

2011-10-10T22:00:00.001-04:00

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.

2011-09-29T22:00:00.002-04:00

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.

2011-09-14T16:00:00.005-04:00

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.

2011-09-10T22:43:00.003-04:00

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!

2011-09-09T22:00:00.000-04:00

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.

2011-09-07T01:02:00.003-04:00

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.

2011-09-02T18:00:00.005-04:00

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.

2011-08-31T21:00:00.002-04:00

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...

2011-08-28T17:30:00.006-04:00

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.

2011-08-25T18:07:00.013-04:00

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.

2011-08-23T22:41:00.009-04:00

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!!!

2011-08-20T14:50:00.006-04:00

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!

2011-08-19T09:12:00.007-04:00

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.

2011-08-17T18:03:00.003-04:00

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...

2011-08-17T10:21:00.005-04:00

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.

2011-08-16T15:32:00.003-04:00

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!

2011-08-14T14:26:00.002-04:00

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

2011-08-02T14:12:00.008-04:00

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

2011-08-01T23:59:00.002-04:00

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

2011-08-01T23:22:00.010-04:00

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.

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

2011-07-29T09:04:00.003-04:00

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

2011-07-25T22:00:00.006-04:00

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)

2011-07-21T09:01:00.005-04:00

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!

2011-07-16T21:52:00.000-04:00

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.

2011-07-15T21:30:00.000-04:00

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 :)

2011-06-12T22:00:00.009-04:00

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.

2011-06-10T23:20:00.013-04:00

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.

2011-06-08T19:00:00.004-04:00

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

2011-06-02T22:00:00.005-04:00

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

2011-05-25T22:58:00.006-04:00

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...

2011-05-22T21:52:00.008-04:00

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!!!

Walk with a Monkey!

2011-05-20T22:55:00.005-04:00

This year Mimi was chosen to be the ambassador for the Six Flags "A Walk in the Park" Fundraiser.

All proceeds from the walk will benefit Children's Miracle Network Hospitals which Baystate Children's Hospital is a part of. Every dollar donated will go directly to your local Children’s Miracle Network hospital to support research and training, purchase equipment, pay for uncompensated care and more; all in support of our mission to save and improve the lives of as many children as possible. Fundraising will help support things like research, pediatric education training programs, cutting-edge equipment, and uncompensated care for families right in your backyard.

We will be walking in support of Mimi who has been a brave little monkey just going with the flow of whatever she is asked to do as far as treatments and medicines go, never asking why. Iza and Magi who are Super Sibs and help out when Mimi is not feeling great or is in the hospital. This year the girls' friend Adrianna will be walking with us, we will celebrate her bravery and recovery.

Come have some fun for a good cause and Join our team!

Headaches are no fun.

2011-05-13T17:16:00.002-04:00

Poor Mimi went to bed with a slight headache but woke up crying that her head really hurt which was followed by her getting sick. She knows her body pretty good though and got a bucket early in the morning. So Iza went off to school while Mimi headed to bed where she stayed for most of the morning, when she woke up we got the okay for Tylenol which helped her headache a little and Zofran helped her nausea. She spent most of the day in her bed. I think her body might just be tired from her last five days of steroids. NO fever though so we got to stay home, I think tonight will just be a quite movie night at home and an early bed time.

Clinic Day

2011-05-06T23:17:00.002-04:00

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.

Weekend of Changed Plans.

2011-05-02T11:16:00.000-04:00

Friday (4/29) night Iza and Mimi were having a sleepover at the neighbors upstairs. Mimi enjoyed the sleepover until about 5am, I heard her footsteps coming down, she said she missed me and puked at my feet... which usually means fever. Sure enough 102.5, I made the necessary phone call, I packed her in the car and she was admitted around 6am.

It might say Miss Giggles on her pajamas but she was NOT Giggly at 6am.

Counts came back okay I thing ANC was around 750. By noon she was feeling much better just a junky cough but since she had a fever we were in there for at least 24 hours from last fever. Babcia came to visit while I took the other girls to a First Communion and made sure to take plenty of pictures for Mimi. I came back we swapped places and the girls went to have a sleepover at Babcia and Dziadziu's. Since we were inpatient we decided to do the Pentamidine inhalation treatment. The inhalation treatment will replace the daily antibiotic, we will do this once a month instead. I am hoping for no crazy side effects since this is antibiotic number 4. I was not there for the beginning of the treatment but got there right at the end and the minute Mimi saw me she just broke into tears. Poor thing, I think it was mostly that I wasn't there (my mom was) and this was all new to her. After some hugs she was back to herself and excited about having a hospital movie night with Auntie Tracy.

Magi was just going with the flow for most of the weekend but poor Iza was an emotional wreck. She missed me and Mimi, didn't really know what she wanted. Since I knew Mimi was fine at the hospital and some one was there to be with her, I had to take care of Iza. She is a sensitive little girl and is not always able to express her feelings. Sunday was special for her we spent it at a Pancake Breakfast Fundraiser for Cancer Free Kids. Iza and Magi had a great time eating loads of pancakes, on the wagon ride, and watching the trains.

Magi and Iza enjoying some pancakes and milk in the sun.

All in all we got to do the things we were suppose to just minus a kid, but thanks to the wonderful nurses and child life she did not even thing she was missing out on anything. She was discharged in time to come home and enjoy dinner and cake for Daddy's Birthday!

Christmas In July - The Blanket Fairy

2011-04-29T21:07:00.003-04:00

There is a wonderful woman who Calls her self The Blanket Fairy and below is her mission:

The Blanket Fairy's Mission is to make and donate as many blankets as she can to children with pediatric cancer. The Blanket Fairy follows many blogs & websites and when she sees a child that needs a lift in spirits while going thru treatment she will contact their parents to have their child go into her Sprinkle Dust Treasure Chest to pick out a blanket or any other item that may be available in there...

If you know a child that is going through cancer please spread the word.

Clinic Day.

2011-04-27T15:55:00.004-04:00

Mimi is a bit crabby lately due to her late nights and since she is keeping Iza up, Iza is also not in her best moods... it has been a flood of tears over nothing around here. Come to find out the antibiotic that she is on has "insomnia" listed as a possible side effect. Yepiee...

Counts are good. So up went her Methotrexate dosage., everything stayed the same.

Neutrophil- 1300

Happy Easter and a Quick Update

2011-04-23T21:33:00.005-04:00

The new antibiotic (Atovaquone) seems to be okay... I think. Mimi is able to keep it down and has not had any issues with it. I say I think because she has been somewhat more tired since she has been on it and on Thursday right before lunchtime I noticed a rash allover her neck, chest and some on her arms. So to clinic we went all of us, all three monkeys, the girls got STRICT instructions on not acting nutty and thankfully followed for the most part. Oh as far as the rash we don't know what it was, just another weird Mimi thing. The concern was chicken pox, but her rash/spots went away by Friday night, and hopefully will just stay away.

This week was school vacation week and although I had to work most of it we were able to squeeze lots of fun in and see some friends we haven't seen in a while. It has been a rainy and chilly week but perfect for plays, movies, mall and lots of crafts. The girls did lots of egg painting and coloring as well as eating...

Happy Easter!
Szczesliwych Swiat Wielkanocnych!!!

Clinic Day.

2011-04-13T20:44:00.004-04:00

Well finally Mimi's counts are not crazy, last week at the ER her WBC was something in the 8's. Today it was much less. She is back to her old self goofing off and running around like a monkey with her sisters. Speaking of MONKEYS we will be walking for the Children's Miracle Network once again this year on June 12th at Six Flags. For those that walked with us last year we hope you can make it out again and we also hope to see some new faces too!!! More details to come soon.

Counts:
WBC - 2.8
Hgb - 11.6
Platelets - 249
Neutrophil - 1100

Oh and we are starting yet another antibiotic (Atovaquone 4mL daily), which only comes in liquid a very yellow liquid, amazingly she was able to keep it down! She has had a lot of issues taking liquid meds I was ready with a bucket but there was no need for it. Hopefully we won't have any issues with it.If we do there is another plan.

Night at the ER

2011-04-07T10:24:00.012-04:00

At midnight I heard some whimpering followed by screams coming from Mimi. She was holding on to her right side saying she was in a lot of pain. So speed dial to the Onc on call and 20 minutes later we are in the ER. With loads of puking people around us... Fun times. Luckily the triage nurses got us through super fast in a back room with a door. At that point, around 2am, Mimi had no fever still so pain but not as bad as it was initially. Blood work and a urine sample was taken and we waited... and waited... played Cooking Mama on the DS but it was making us hungry so we switched over to word search and puzzles. At some point I was told maybe appendix, maybe kidney stones, maybe a UTI (the urine sample was inconclusive/contaminated.) So no real answers I will be watching her and hope this was just a weird Mimi thing. We were sent home at 7:30 am, just in time for me to get Iza off to school and Mimi back to bed. She was wiped out and slept for a long time right now she is washing the ER smell off. I will be drinking lots of coffee today. Update: Okay so it is a UTI Mimi will start an antibiotic for 5 days. She has been fine all day. She had a nice long nap. I will catch up on my sleep one day or decade.

Clinic Day.

2011-03-30T19:13:00.007-04:00

A scheduled clinic day. Counts are good, not as high as last time which is good, we don't want them to bee to high. I voiced my concern about Mimi still not feeling 100%, still having headaches and random pains but we will continue to just watch her. I think her pains have been less frequent from two weeks ago. Hopefully this was just a side effect from Dapsone. Today was one of the first super nice days the girls ran around outside loving the weather, although mother nature has a trick up her sleeve this Friday we are suppose to get a snow storm! Hopefully it is just an April Fools Joke.

Happy Spring!

Unscheduled Clinic Visit

2011-03-26T22:07:00.005-04:00

Since about Sunday Mimi has not been feeling great. Headaches, random pains all over, cough, no appetite, trouble sleeping, pale... all things that have been keeping me up at night with an uneasy feeling. She was up most of Thursday night unable to sleep and was so exhausted in the morning that she asked if she can just rest and not go to school. She slept in and we went to clinic to get checked out. While she was getting ready in the bathroom she called me in and very calmly said "I think my hair might be falling out again" clumps of hair came out but she wasn't bothered my it at all. Kids amaze me daily.

The thought right now is that the newly added antibiotic caused all these issues. I think she got almost every side effect listed. Counts came back, higher than I ever remember, except her red count (Hgb) which went down due to the antibiotic. I have not heard back about her chest x-ray yet. Right now Dapsone has been withdrawn and she will start a monthly inhaled Pentamidine.

Magi went with us to clinic and made out like a bandit with stickers from the x-ray tech who was really nice and let the girls check out the "bones inside picture."

Counts:
WBC - 6.7
Hgb - 10.5
Platelets - 254
Neutrophil - 5300

Radiothon

2011-03-22T16:20:00.003-04:00

A local radio station WMAS 94.7 hosted the 10th annual Radiothon to benefit Children's Miracle Network, which our hospital is a part of. Many families were asked to share their stories about their experiences with the Children's Hospital. Some staff members also told inspirational stories. It was hard not to get emotional while listening to the radio station over the three days.

The girls were very excited to be on the radio and had all sorts of things they wanted to say until we were live on air... they were nodding their heads and smiling, not something you can see on the radio. The local news station was also interviewing patients and somehow Mimi and I got on TV. You can view the news clip.

The three day radiothon was a success! 201 thousand dollars was raised and all of it will stay locally.

Clinic Day 3-16-11

2011-03-16T15:26:00.005-04:00

Mimi was not feeling great in the morning so I had her stay home until it was time to go clinic. She has been nauseous and constipated for the last three days, Zofran and Maalox seemed to take care of those issues. I think it is a combination of the time change, rainy weather and half of their class being sick.

Today was Vincristine day so her port was accessed, blood drawn and she got checked out by the Onc. All looks good. Last week her blood was sent out to check if she has a 6mp (Mercaptopurine) sensitivity, she has been on about 47% dose for a while now and her counts took a while to come up. The results came back normal. So next step is to take away Bactrim (weekend antibiotic) and use a daily antibiotic.

Today's Counts:
WBC - 5.8
Hgb - 11.6
Platelets - 214
Neutrophil - 4200

Clinic Day 3-1-11

2011-03-16T15:16:00.003-04:00

Procedure Day for intrathecal chemotherapy (methotrexate). Everything went as scheduled, Mimi even got a foot massage right before we went down. She woke up shortly after the procedure, asked for a munchkin and off home we went. It is weird how routine these things have become, I still get knots in my stomach before she goes under, but it doesn't scare her she knows what the plan is and just goes with it.

Her counts were great ANC was 2200.

Oh and one more BIG thing. Mimi asked when will she be done taking chemo and the official date right now is November 6th, 2011. Seems surreal.

Winter Wonderland at Camp Sunshine

2011-03-12T20:48:00.009-05:00

On Tuesday (2/22) we made a quick trip to clinic for counts which were great so with giant smiles on every one's faces we filled the car up and off on our adventure we went. The whole time the girls thought we were going to visit Auntie Tracy for a couple of days. They were getting a bit suspicious asking why we need our pillows, towels and a bunch of outfits. Mimi and Iza were very confused as to why there were bathing suits packed, I was able to somehow make answers up. Wednesday we woke up ate and back in the car we went I told the girls to take a long nap, when they woke up Mimi read a sign that said we were in Maine. A couple miles later she saw a sign that said "CAMP SUNSHINE" with an arrow to turn left. All three were screaming "Turn LEFT Turn Left!!! Can we go there??? Can We stay!!! Pleaseeee" To which Tracy and I replied "Sure!"

Three Very Happy Campers

It was so great to be back! The girls ran around looking for counselors from the summer and were overjoyed to find some of their favorite people. I kept another secret, one of Mimi's friends from clinic was coming to camp as well the girls were all happy to see each other.

The five days were filled with winter activities; ice skating, snow shoeing, horse drawn slay rides, walks in the snow, sledding. Aside from outside fun the girls enjoyed games, arts and crafts and the indoor pool, Iza and Mimi got to go daily and loved it! The talent show was such a hit! Iza sang Baby by Justin Bieber she brought her J.B. pillow up on the stage with her. Mimi did three cart wheels. While Magi went right up and sang Three Little Monkeys, no fear of the audience at all. We were all equally tired at the end of each night.

The Gang

While the kids were off doing their activities with some wonderful counselors, adults got fun time also, as well as some time to be able to meet and talk to other parents who understand, relate and share their stories.

We had such an amazing summer session last year that I wondered how the winter session will be and it was so wonderful. It truly was a Winter Wonderland. We got about 16 inches of snow during one of the days, it was beautiful to just sit at the fire place in the dining hall and look out the window as the snowflakes were dancing.

Gorgeous View of frozen Sebago Lake.

Once Again Thank You Camp Sunshine and everyone who makes it possible we can't wait to go back!!!

we are counting down the days until March 18th when we go back for a special Twin with Cancer weekend.

Colors.

2011-02-22T16:09:00.003-05:00

A new found love for finger painting.

All girls at Home.

2011-02-16T09:34:00.004-05:00

I did not have to explain to Iza why she had to go to school and Mimi did not because Iza ended up with a fever Monday night so all the girls have been home. Iza has been really funny at night the fevers are causing her to have full our conversations while she is sleeping. Tuesday night she was chasing someone in the hallway, she got me out of bed to help her, it was more of a nightmare but she laughed about it in the morning. Last night she kept talking about taking pictures at Sea World, Disney and something about ketchup.

They are not too miserable but since Iza's fever has been coming and going Since Monday night I have kept her home, Magi is stuffy and sneezy, Mimi on the other hand has been the healthiest of them all. She has been reading books to Iza and Magi, playing Uno, Go Fish, writing notes. So learning is still happening even though they are not in school.

They are getting a vacation before their school vacation.

Fever.

2011-02-14T20:09:00.003-05:00

Yes. It has been a while, almost a year. But it decided to creep up on us Sunday night. Mimi went from fine to all sorts of pain and fever in about an hour. Her biggest complaint was her leg she could not walk on it, I remember this happened last year during fevers also. It took me a minute to find my thermometer which read 100.7, while I was dialing the on-call Onc. it kept going up higher. She was miserable at home and the drive there but perked right up with Tylenol and Kyle "the man with the crafts and movies." She had a pretty good night we both slept through all the vitals, I made sure they actually came in because I did not remember and neither did Mimi.

In the morning she seemed fine and then fever came back again, 102.9, came down with Tylenol but as soon it was wearing off fever was back. She spent the day taking cat naps, seeing some friends, making crafts. Her blood counts were not terribly low so that was not a concern. At some point in the morning she had a flu swab, a tiny q-tip in the nose, she was not a fan. Results showed she in face did have the flu so we had the option to stay another night or go home with a box of Tamiflu. Mimi chose home sweet home!

Her chemo is on hold, so for now we will just do the Tamiflu and Tylenol as needed for fever. Spinal Tap has been rescheduled. Also no school, which is really hard for Iza because "that is NOT fair!"

Magi had a lovely date day with Daddy she keeps telling me she wants to go on dates all the time, I am not sure if Dan knows what he started... She went to the mall, got her hair trimmed, picked out valentine gifts for everyone and also had lunch.

Wish List for Camp Sunshine.

2011-02-13T12:28:00.003-05:00

In the mail this week we got a newsletter from Camp Sunshine. The girls were interested in the stories most of them were about all the donations the camp receives. On the back of the newsletter was the camp's wish list. Both girls decided they want to use their money and buy some things on the list and drive it to camp.

We will be shopping this week and filling a box of arts and crafts supplies, birthday candles, stickers and whatever else the girls think of. If anyone else would like to contribute to our Wish List box for Camp Sunshine let us know :)

What the girls DON'T know yet is that the week of Winter Vacation they WILL be going to Camp Sunshine for the winter session. I have not told them yet so far I have been able to keep it a secret. I can't wait to see their faces when they find out. They have been asking to go back almost daily, they wished it while they blew out their birthday candles and even asked Santa!

Snow Happenings.

2011-02-07T21:09:00.010-05:00

Since Christmas there has not been a full week of school. I am hoping that this week will be a full week, that the letter of the week "D" gets a full five days, and that we can return to our regular scheduled chaos.

We have been quite busy, reason why had no time to update. We have all enjoyed the snow, yes I said WE ALL. I think I like it more this year because I am not watching it from the hospital windows like we were last year. So fat this year we took full advantage of the cold New England outdoors as well as the the craft closet indoors.

Last week Mimi has a clinic visit for counts, on the worst snow day, we figured if the awesome nurses can get there so can we! Clinic went well Mimi's counts did not change much since last time ANC was 1400. She is still on 50% of her dosage of her daily Mercaptopurine. We go back on the 15th for a spinal tap, I did not tell Mimi yet since last time she spent two weeks looking at the calendar being upset about it. We will just focus on Valentine's Day for now!

Our Snow Happenings in Pictures...

We melted crayons into hearts.

Nice to keep little hands busy peeling wrapping off the crayons.

The girls made a three layer cake for Chris & Meg's 1st wedding anniversary.

The were very excited to play Cake Boss.

Newspapers in the making. This one they came up on their own to stall bedtime before yet another snow day they stayed up making newspapers out of newspapers.

Sledding!!! Magi's first time and she loved every second, she is a dare devil just like her sisters.

Iza and I walked out to the fresh deep snow and made a giant heart path.

This is a hawk. Something we usually don't see outside of out kitchen window. We watched him have his lunch this day it was pretty amazing, although it was "just a bird eating a bird" to the three year olds.

Snow Snow and more Snow...

2011-01-25T21:17:00.006-05:00

A whole lot of snow has been piling up around here, every time it snowed the girls had a snow day or a delay. Today was the first day with snow that they had school and it was really hard to get them moving in the morning they did not believe me they really had to go. On the way home today they never made it in the house they just played outside until their noses were red.

Iza thought long and hard how to spend her Birthday Toys r Us gift card and chose a Barbie pool. While outside it is cold and snowy, all the Barbies have been having pool parties complete with slides and drinks! Mimi got a Barbie (Fake) IPod.

Clinic Day.

2011-01-19T22:53:00.003-05:00

Due to the two hour snow delay we all got to sleep in today. That is always nice.

Iza went to school, Magi and I went to clinic with Mimi. Seemed like everyone had a late start, there were more people than usual in the waiting room. We didn't mind reading some books.

Her counts went down a bit her ANC was 1500 so down quite a bit from two weeks ago. No change in her medications this week. Mimi got her monthly Vincristine which made her feel "pukey" in her words, she asked to stay home and not to go back to school. It was nice to see her and Magi play nicely. They dressed up like squirrels by using blankets as tails, they drew nuts cut them out and spread them all over the house after that they were finding their nuts so they can store food for the winter. Mimi and Iza recently had lessons on hibernation, so Magi is now getting the lessons also.

Clinic Day (January 5th)

2011-01-09T20:37:00.004-05:00

Strange. I forgot to post.

All was well. Counts are continuing to be good so her weekly Methotrexate was increased. Mimi fell asleep while I had a conversation with her Onc. she woke up just in time to pick out stickers for herself and her sisters and go back to school for lunch.

Today's Counts:
WBC - 4.2
Hgb - 13.3
Platelets - 226
Neutrophil - 2500

Christmas Break

2011-01-04T16:08:00.015-05:00

On Christmas Eve we celebrated by having a traditional Polish Wigilia. Many dishes of amazing food made by my mom. Magi's favorite part was the breaking of the Oplatek, she figured out how it works this year and was eager to break pieces so she can eat some herself. I remember doing this since I was a little girl and it is nice to see the girls doing the same thing. We all ate until we could eat no more and then opened presents. The next morning Iza was the first one awake around 7:30 but climbed into our bed and waited until Magi and Mimi were awake so they can open presents together. This year Iza and Mimi bought presents at the St. Nick Shop at school, it was cute to see what they got each other and us, they put alot of thought into their little gifts.

This is the best I could get with the three of them...

Making Gingerbread House, it caved in due to the large amounts of icing and candy.

The girls had a New Year's celebration at school during the break. They enjoyed a balloon man/Magician, arts and crafts and music. They counted down and had a balloon drop at 3pm, it was loud! Most of all I think they were happy to run around with their friends and talk about what they have been up to. For the real New Year's Eve we rented movies, ate pop corn, and one by one everyone but me fell asleep before midnight. Mimi requested I wake her up so she can see the ball drop but she refused to open her eyes when I did she just stuck her tongue out so I can give her her chemo pill and she fell back to sleep.

Balloon Drop at 3pm :)

Mimi has been doing okay for the most part, for some reason this round of steroids really did a number on her. She would get very upset about silly things to the point of crying for hours and unable to catch her breath, it was so hard to watch. The thing that would set her off was/is clothes, she hates the feeling of most clothing and has only one outfit she will wear. I have picked my battles and just keep rewashing the same outfit for her. Good thing she wears a uniform to school and it does not seem to bother her. The good thing is she knows it is the pills doing it, she has learned to eventually calm down and take a rest. Thankfully Dan has been home so he was able to stay home with her so she can calm down while I took Iza and Magi to do things. I do feel bad when she misses things but the reality is she needs her chill time, we all do.

The girl and her pizza, all she wanted was pizza delivered and everything would be okay.

It was delivered and she was all smiles.

In a nutshell: It was a roller coaster week, emotions ranging from full out excitement and joy to some tantrums and tears and some lazy chill days in between. But I would not change anything for the five of us being together!

Merry Christmas.

2010-12-25T01:13:00.002-05:00

Clinic Day.

2010-12-22T20:54:00.003-05:00

This morning Mimi had her monthly Vincristine chemo (through her port) her counts look great, I don't remember them being that high in a long time! She is feeling good and has not been having any real issues. Some dry skin/rash on her face which for now we will just try to keep putting moisturizer on and see if that helps.

Today starts her 5 days of steroids, bummer that it is through Christmas break but there should be enough distraction that we will have it under control.

Today's Counts:
WBC - 5.1
Hgb - 12.4
Platelets - 222
Neutrophil - 3500

"Mommy, I need a haircut!"

2010-12-14T15:27:00.004-05:00

Normally those words would not make a mom tear up. I did. I hugged Mimi trying to hold tears back. She thinks I am being "goofy". I love it!

Missing Teeth Buddies...

Clinic Day (Yesterday)

2010-12-09T20:04:00.003-05:00

We started the morning with Magi getting lots of shots and routine blood draws for three year old well child visit. She was a super star and had Mimi cheering her on. They switched roles when Mimi was getting her blood draw at the clinic. It was nice to see the two of them getting along. So all is well.

Counts:
WBC - 2.50
Neutrophils - 950ish

Special Guests at School.

2010-12-08T20:24:00.012-05:00

December 3rd Iza and Mimi introduced some very special people to their whole kindergarten class. Annalise and Betsy, child life specialists from the hospital came to do a presentation about Leukemia. I have mentioned before Mimi wanted her friends to know what her port is and does. I contacted Child Life, first they spoke to Iza and Mimi asking them what they want to share, also how much I wanted to share. A letter was sent to the parents of their classmates letting them know who was coming and what they will be discussing.

After introductions and some background on what is Leukemia, in kindergarten terms, the kids asked lots of questions. Probably the most exiting part for everyone was Sam. He is a doll with a port, he was quite helpful way back when Mimi got diagnosed both to her and us. He has layers of "skin" as you peel the first layer off you can see a heart with a port that is removable. It shows the what the port looks like under the skin. The girls took him around to all the students and everyone got to feel the squishy part of the port where the needles go. After some more questions from all the kids they were separated into two groups. One group did some medical play by examining Sam, checking his blood pressure, giving him shots, giving him a name tag and so on. All the kids got to wear a mask and pretend they were doctors. The other group made art with things you might find at the hospital, such as band aids, gauze, medical tape and wooden tongue depressors. The kids were very creative with their artwork they just dove right into it and crated some great pieces.

I think everyone benefited form the presentation, all the questions were answered. Mimi is happy that everyone knows now what her port does and why she has it. Iza was a big helper showing Sam, I loved that Betsy and Annalise also mentioned how she is a great sister helping Mimi. I am happy the school was very open about having someone come in and talk. I am so thankful for such a great team of Child Life Specialists at Baystate, they have made some gloomy days a lot brighter, they will all hold a very special place in our hearts forever.

Playing with Sam the doll with the port.

Betsy's group doing some medical play with Sam, the kids were excited about keeping the masks and the name tags they got.

Annalise's group making some great art.

Clinic Day (12-01-10)

2010-12-06T20:04:00.007-05:00

Last Wednesday Mimi saw how an EKG measures her heart's electrical activity, she also saw the chambers of her heart and the blood flowing in and out during an ECHO. Since she is still having random unexplained chest pains both tests were scheduled to make sure there is nothing abnormal with her heart. After the tests we headed over to clinic to recheck counts which did go up since the previous week. Then we went in for a chest x-ray to check if maybe it is the port causing pain or the cough. So miss Mimi was happy to see her chest x-ray and made sure her port is right on her ribs. So even though she did not go to school she sure got lots of knowledge that day. After a long day of tests we headed out for a fun afternoon at Kidcity and finding outfits for Birthday Free Dress day for school.

We got the results from the EKG and X-ray and both look fine. So I guess we will just watch it.

Counts:
WBC - 2.27
Hgb - 12.3
Platelets - 219
Neutrophil - 1030

Attention... We have two 6 year olds!

2010-12-05T20:56:00.005-05:00

I found 12 pictures of Iza and Mimi from January 2010 until December 2010. More often than not Iza is still on the left, it cracks me up because when they were babies and people could not tell them apart I always put Iza on the left in pictures, I think that stuck with them. Mimi went from having bangs in January to not having hair and having bangs again in December! Iza in each picture seems to have less teeth, the tooth fairy works overtime around here. I think this year they have changed so much more than previous years. They are doing alot on their own, they ask bigger questions, they have deep conversations. They went from recognizing letter sounds to full out reading books, as well as adding and subtracting numbers. It is amazing. They are amazing! Happy Sixth Birthday Iza and Mimi!!!

Clinic Day.

2010-11-26T22:41:00.008-05:00

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

UDance at UMass

2010-11-22T20:11:00.009-05:00

Saturday (Nov. 20th) we spent a good portion of the day at the University of Massachusetts. The UMass Fraternity and Sorority Council held its fifth annual Dance Marathon to benefit the Children's Miracle, 100% of the proceeds go to Baystate Childrens Hospital.

This was our first year going so I was not sure what to expect but I was amazed by all the college students that were there for one great cause. The kids and families walked into the hall on a red carpet while being cheered by the crowd, at the end of the carpet everyone was awarded with a medal. The music and dancing started right away. When we needed to step away from the loud fun we were able to go in another room where lots of fun activities were set out for the kids. Face painting, balloon clown man, twister, arts and crafts and more!

The girls loved watching the various dance clubs. Magi got to do Zumba, I was impressed she was keeping up! Needless to say it was NOT easy getting the girls out of there, after many goodbye hugs to their new friends we finally got on the road and the three little dance monkeys fell fast asleep.

Here is a link to the news you can see the girls getting their medals.

Fun Times.

2010-11-21T20:15:00.007-05:00

It has been so busy I have been unable to update. Last weekend we has a jam packed schedule of fun. We started of Saturday with a very fun birthday party for an adorable set of sisters, Happy 7 & 3 A & A!!!. It was at a Clay crafty place, they girls enjoyed painting ceramic creatures, we will be going back for sure! Straight from there we drove on the sleepy Mass Pike and when the girls woke up we were at Auntie Tracy's where they spent the night while I got to have an amazing dinner with some great moms in Boston.

The next day we headed back into into Boston to the New England Aquarium, Three little girls and three big girls as Iza said, Tracy and Ela came with us. Mimi wanted to see eels so bad, she did get to see them although they were being a bit shy, no matter how much she told them to move. Magi was quite exited with the sea horses she was showing them to everyone that walked by. Iza wanted to see sharks but was happy with the giant fish and getting to play with the star fish. The girls did pretty awesome walking all over the place in and out of the T and buses. Although Magi did have one major head turning tantrum which was quite comical... She was screaming (very loudly) that she wanted ready for this... EAR WAX, yes she wanted EAR WAX. I was trying to reason with her at first but she was having none of it. Finally I told her she can have my ear wax if she stops screaming. Eventually we figured out that she wanted Ear Muffs all along. Guess what is going on her Santa list?

This week school has been going good. Mimi has been a bit nauseous lately and I think something else is bothering her because she seems easily irritable. Again this is one of those things that I wonder "Hey is it the chemo making you feel like crap? and you just need to scream" or "You are 5 and are good at this game" Some mornings I have been letting her "no-throw-up-pill" kick in and she goes to school a little later.

Friday night the school held a pajama movie night event. The kids came dressed in comfy PJ's laid out their blankets and ate popcorn while watching a winter movie. It made me so happy to see all the girls enjoy their friends. I got teary seeing them so happy.

Clinic Day (Yesterday)

2010-11-11T17:29:00.006-05:00

Quite the bust Wednesday we had between school, parent-teacher conference, clinic and work. We did it! So starting with the first Iza and Mimi are doing great at school their teacher had nothing but good things to say. They made us proud! Clinic was quick counts are good, we go back in two weeks for a Spinal Tap. Mimi is not happy at all to have to miss a whole day of school. ** Just got a call and Mimi's procedure has been rescheduled until Friday after Thanksgiving, she is happier that she no longer has to miss school.

At clinic both of the girls talked to the child life specialist about her coming to their class and explaining to everyone what a port is and all the things Mimi does while at clinic. I always left it up to Mimi weather she wanted that and at first she did not seem to care, but lately she has been asking me if someone can come to school and explain what her port does. Iza also wants to bring her SuperSib trophy.

Counts:
WBC - 2.37
Hgb - 12.1
Platelets - 268
Neutrophil - 770

Sister Letters.

2010-11-03T19:41:00.004-04:00

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.

2010-11-01T20:12:00.005-04:00

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...

Happy Birthday to the youngest!

2010-10-31T22:10:00.005-04:00

Little Miss Magi spent her first day being three today with her big sisters, buddies, aunties, uncles, Babcia & Dziadziu. Of course there was way too much food but it was all yummy!

When Magi was born one of the nurses told me Magi will be a wonderer, a traveler. For a while I thought she got her all wrong. She was not into walking until much later, she didn't really talk early. Well All that changed and she has grown so much this past year and not just in shoe size. She talks like she is much older than she is, sometimes I forget how old she really is. She is very independent, although she pretends she is not and likes things done for her. She is our little fire cracker our little BOO!

Happy Third Birthday my tiny monkey!

Magi and her Giant Birthday Doughnut.

Asleep on the couch with some of her favorite things bunny she called bear forever and her night-night

Clinic Day (Yesterday)

2010-10-28T22:16:00.003-04:00

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

Halloween Festivities

2010-10-26T20:17:00.008-04:00

I really enjoy Halloween and all the fun that comes with it. Last weekend we had a jam packed fun weekend that started at a Halloween Party by Griffin's Friends. We had such a great time with clinic friends and made some new friends as well. Each girl found a high school volunteer who helped them make some very creative cookies, loaded with several layers of colorful icing and topped off with all sorts of candy. Good thing all those cookies did not come home with us. Mimi asked if some of the volunteers can come home with us. (Hi Sam!)

Right after the Bowling Alley we headed over to the schools Pumpkin Festival. Although it was chilly the kids did not seem to mind they ran around played games, jumped in hay and got their faces painted. Trunk-or-Treating was the girls' favorite part, it is the first time they have ever done it and really enjoyed it. We finished the night off with a haunted house and headed home for a good night of sleep!

Clinic Day (Yesterday)

2010-10-14T12:13:00.004-04:00

I took all the monkeys to clinic with me yesterday afternoon which is always fun when you are trying to get out of there. But we managed. Mimi's counts were good, she looks fine so after making some art and chatting with the staff we were on our way home... that was until Mimi fell down the stairs right outside the clinic door. She bruised up her back pretty bad so back in we went got an ice pack and other than being sore she is fine. I guess we just could not have an uneventful exit.

Today's Counts:
WBC - 3.63
Hgb - 12.0
Platelets - 278
Neutrophil - 1770

A long weekend of fun.

2010-10-14T11:25:00.005-04:00

Saturday morning I packed the car and off on a road trip we went. I did not tell them where we were going after many guesses they finally fell asleep the Mass Pike (aka Massachusetts Turnpike) always puts the girls to sleep. They were very exited to wake up in Tracy's driveway! A bonus was a visit from auntie Sherri and Joe! Sunday was such a gorgeous day we spent at an apple orchard where we ate and picked lots of delicious apples. There were also horses, bunnies and pumpkins. Of course a trip to an apple orchard would not be complete without apple cider doughnuts! Yum! We got back home Sunday afternoon just in time to see some more awesome aunties and celebrate Uncle Chris' birthday. Monday was a day off from school and the girls wanted to see all their friends who they have not seen since they have been in school again we had some great weather so off to the park with friend we went! This is such a great time of the year.

Unplanned Visit to the Clinic.

2010-10-06T20:26:00.005-04:00

Mimi woke up this morning a bit off, she had back and chest pain, or in her words: "where my boobs are it hurts inside like a needle." No fever but her temp was in the high 99s. She desperately wanted to go to school so up the hill we all went. She was fine until 10:15 right around the same time I was on my way to work... I got a call from the school nurse that her temp was up and she was asking to go home. I picked her up and shortly after we went to clinic. No fever, lungs sound clear, and the mysterious chest pain gone. So we continued with our regularly scheduled afternoon.

Tonight the library was hosting a Stuffed Animal Fashion Show good thing I saw that on the fridge and we made it to the library just in time. Iza took Angelina, Mimi picked Sparkles, and Magi grabbed Tweety. Everyone went up and talked about their animal and did an obstacle course. All the stuffed animals won a trophy and their owners got to pick candy thankfully they were advised to save it for tomorrow!

Clinic Day.

2010-09-29T21:15:00.005-04:00

Mimi needed a small pep talk on the way to clinic since she did not want her port accessed. She wasn't crying or anything I think she just thinks it is cool to get her finger pricked and watch as the blood drips to the tiny little tube, oh and the tube is purple which happens to be her favorite color. If you are thinking she is a bit odd liking to watch her blood her sisters are big fans of watching it also. She got weighed, measured and accessed while Magi and Iza watched and said "Ooooo Blood" as it went into the test tube. She also received her monthly Vincristine through her port and tonight she started the monthly five day steroid pulse. I have warned her teacher of steroid mood, although I am sure she will be on her best behavior during school hours.

Today one of the nurses showed the girls an actual port they thought it was really neat. They both saw it before Mimi had hers put in last August but neither of them remember. The fact that that is becoming a distant memory for them is a good feeling. Although Mimi still remembers the first nurse that took care of her and we have lots of Barbies named Kelly. So bad memories are fading but the good ones are staying.

Today's Counts:
WBC - 3.5
Hgb - 11.6
Platelets - 263
Neutrophil - 2000

Last peeps of summer weather.

2010-09-27T20:45:00.004-04:00

Not counting today we had some wonderful weather. This past week the girls have been playing at the park after school, this weekend we attended a outdoor birthday carnival complete with face painting and a water slide! Although nothing tops of this Sunday when the girls joined Dziadziu in the ocean, I just took pictures and stayed out of the water.

School has been going really well, the girls are making friends and learning lots of new things. They are still running out the door to get to school and at pick up smiling, even though sometimes tired. I love our walks home and they tell me about their day I get to hear it twice, both sides of the story. I have said it before but I love this age, they change SO much, they are making friends of their own, both of their personalities are really changing, they have always had their own identities but more so now that they are in school. They were telling me they had to sit in pairs and guess each other favorite colors, they laughed and said they sat together because they would win, they just realized they have some advantages. Iza also keeps asking me to cut her hair so her and Mimi can confuse people.

Not to leave Miss Magi out of this post she has been doing great as an only child during the day. She has also started ballet classes once a week in the mornings. So far she is loving it!

Clinic Day.

2010-09-15T20:39:00.004-04:00

Mimi had to miss most of school today since we had an appointment about her foot first thing in the morning and a clinic appointment right after. She went back for lunch and joined her class in the lunch room.

First her foot seems to be working the way it is suppose to, all the bones and muscles are fine. The only thing I found out is that the top of her feet is high (almost like the bone on top is slightly higher than normal) which explains almost 5 years of her hating sneakers! They were just uncomfortable on her feet, the doctor just suggested not to tie them tight on top. As far as the occasional pain and weird walking with the right toes pointed in we will keep watching it and hope it goes away, since he did not see it as a problem at the moment.

Next was clinic for counts. Super fast! And great counts too which makes me feel a little less freaked out about school. Since the counts were good chemo is on 75% dosage instead of 50%, we are working our way back to 100% hoping for no count crashes.

Counts:
WBC - 3.4
Hgb - 12.4
Platelets - 244
Neutrophil - 1600!

GOLD STAR goes to Miss Magi who went to all the appointments with us today and was a superstar!

Flashes of Hope

2010-09-12T20:43:00.004-04:00

While at Camp Sunshine we had an opportunity to get photographed by Flashes of Hope, such an amazing organization. All photographers volunteer their time and talent, all the services are free of charge. The photographer was very playful with all the girls and captured their silly smiley faces.

School is a hit!

2010-09-12T20:12:00.002-04:00

The girls are loving school. They are so excited every morning to run out the door and up the hill to go join their classmates. Their days are filled with friends, learning, listening and running around being kids. When Magi and I pick them up in the afternoon after sister hugs they talk and shout about their whole day, I absolutley love hearing all the details of their day. All this fun definitely takes a toll on them because by 6 o'clock everyone is so tired and ready for bed it gets pretty nutty around here, that will take some time to adjust to. The most important thing is they want to get up in the morning and do it all over again!

Mimi has been feeling pretty good and has been keeping up with the whole day of school. I hope it continues that way. We will go in Wednesday morning to check her foot and also to clinic for counts.

Our Little School Girls!

2010-09-07T20:18:00.003-04:00

First day of school was great! They girls were so excited they ate really fast got dressed and wanted to run up the hill to go into school. This morning Auntie Tracy was here for emotional support, Toto (aka Victor) and Daddy came from work to walk up the hill with our official Kindergartners. While the girls were at school Magi played with all the toys she is usually not allowed to play with she never really missed her sisters but was happy to go pick them up. On the walk home they talked and talked and talked about their first day, about their new friends, snack time, story time, lunch, play... It was great. They were yawning at 5:30 and sleeping before 7pm, I say that is a good 1st day!

Before we left the house the girls asked me to draw a heart on their hand so they can have my heart at school with them... They saw it in a commercial and thought that is what you do.

I HEART five year olds!

Running up the hill.

The building in front of them is the school, we can see it from our house.

Neutrophil Dance Worked!

2010-09-03T20:42:00.007-04:00

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.

2010-08-31T14:57:00.007-04:00

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

The Happy.

2010-08-31T14:12:00.004-04:00

This whole weekend was filled with fun! I have said it before and I will say it again we are making up for last August that we spent in the hospital.

Friday night we got treated to a Rock Cats Baseball game by Griffin's Friends. We took Auntie Mary and Auntie Meghan with us. We ate LOADS of food and every ice cream they had to offer, watched the game and the fireworks afterwards. It was a late night but we all had a blast!

Sunday we were all over the place one of the highlights was a ballet show at the Eric Carle Museum, the girls really enjoyed it. Amherst Ballet presented Hansel and Gretel. We stayed after the show made some watercolor paintings and also went to story time.

The Hungry Caterpillar Bug!

"Bad Girls" photo by Toto

The girls were playing with water balloons outside

and decided to draw faces on them and pretend they were babies. It was pretty funny!

We HEART Art!

2010-08-26T21:18:00.005-04:00

I love everything about art. I always have. Seeing my girls take a true interest in art makes me so happy. Art has always been therapeutic to me. I have also seen the positive impact painting and creating has for Iza and Mimi. They would draw stacks of pictures for each other when Mimi spent a lot of time in the hospital. They draw pictures for anyone that is sad, happy, getting married, having a baby, you name it! Basically if you know Iza and Mimi you have gotten a picture of some sort from them. Magi is not too far behind on that.

Today was the Children's Hospitals 1st Annual Art Show. All the girls got dressed I did four heads of ponies and braids and off we went to the show. Lots of creative artwork was all over the room, the girls ran around looking at them, ate some light snacks and were off running around and giggling with friends from the clinic. It is easier to run around when no one has any IV poles attached to them! It was great to see them all have so much fun. All the little artists were awarded with a certificate and a medal. Mimi donated her artwork to be displayed at the hospital, Iza chose to take hers home. Thank you to everyone who put this together, most of all Betsy from Child Life. We hope there will be many more art shows to come!

click for larger image

"Happy Rainbow Family" by Mimi & "Sunflowers" by Iza

Clinic Day.

2010-08-25T20:19:00.003-04:00

We went in to check counts to see if Mimi can resume chemo. Counts went up so she is back on 50% of her dose. This was her second drop and according to her protocol she goes back at 50% and it will be gradually increased to a 100% dose.

Next week starts her 3rd cycle of Maintenance which starts with a Spinal Tap.

Counts:
WBC - 2.23
Hgb - 12.1
Platelets - 130
Neutrophil - 850

Tomorrow is an exciting day both Iza and Mimi have entered paintings in the Children's Hospital 1st Annual Art Show. They are going to dress fancy and we will all go to the art show tomorrow night. I am one proud Mommy!

Mimi. Kicked Cancer.

Kids Helping Kids.

Good Counts = Earrings!

Clinic Day

7!

It's OUT!

BIG day tomorrow!

We like to Dance, UDance?

There is Art in our Hearts.

First OFF Treatment Clinic Visit.

Officially OFF Treatment.

White Halloween!

Procedure Day. Countdown is on.

Tomorrow Last Lumbar Puncture.

Boo at the Bronx Zoo

Clinic Day.

Pumpkins and Apples in the Sun

Routine Clinic Day.

Clinic Day.

GOLD Ribbon.

Back to School and Fun!

Clinic Day.

Mimi DOESN'T have Malaria.

Clinic Day.

Good News all around...

Important phone calls.

Home with Fevers and Neutropenic.

Busy day ending with Discharge!!!

Rough Night but Lucky Charm kind of a morning!

One more night.

Chips and Salsa Cart Needed...

Intrerrupted by a Fever.

I say SUN you say SHINE!

Clinic and Procedure Day

Raw Emotions

Neuropsychology Testing

Neuropsychological testing

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

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

We HEART Child Life Specialists

Clinic Day (yesterday)

Six Flags... More Fun!

A Rather Lengthy Update.

We Walked the Walk :)

Respiratory Therapy.

Clinic Day and Summer Concert.

6 1/2

SUN is here! Clinic Day

To Go or Not To Go...

Walk with a Monkey!

Headaches are no fun.

Clinic Day

Weekend of Changed Plans.

Christmas In July - The Blanket Fairy

Clinic Day.

Happy Easter and a Quick Update

Clinic Day.

Night at the ER

Clinic Day.

Unscheduled Clinic Visit

Radiothon

Clinic Day 3-16-11

Clinic Day 3-1-11

Winter Wonderland at Camp Sunshine

Colors.

All girls at Home.

Fever.

Wish List for Camp Sunshine.

Snow Happenings.

Snow Snow and more Snow...

Clinic Day.

Clinic Day (January 5th)

Christmas Break

Merry Christmas.

Clinic Day.

"Mommy, I need a haircut!"

Clinic Day (Yesterday)

Special Guests at School.

Clinic Day (12-01-10)

Attention... We have two 6 year olds!