Out of 3 daughters Mimi is our middle child, older sister Iza by 3 minutes and a younger sister Magi by 3 years. Mimi was diagnosed with Acute Lymphoblastic Leukemia (ALL) on August 12, 2009. After 2 years, 2 months and 26 days on November 6th, 2011 she took her last chemo pill and is considered OFF Treatment! This is our story of our journey through childhood cancer.

Saturday, December 25, 2010

Wednesday, December 22, 2010

Clinic Day.

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

Tuesday, December 14, 2010

"Mommy, I need a haircut!"

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...

Thursday, December 9, 2010

Clinic Day (Yesterday)

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

Wednesday, December 8, 2010

Special Guests at School.

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.

Monday, December 6, 2010

Clinic Day (12-01-10)

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

Sunday, December 5, 2010

Attention... We have two 6 year olds!



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!!!

Friday, November 26, 2010

Clinic Day.

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

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

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

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

Monday, November 22, 2010

UDance at UMass

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.



Sunday, November 21, 2010

Fun Times.

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.

Thursday, November 11, 2010

Clinic Day (Yesterday)

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

Wednesday, November 3, 2010

Sister Letters.

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

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

Monday, November 1, 2010

Steroids.

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

Sunday, October 31, 2010

Happy Birthday to the youngest!

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


Thursday, October 28, 2010

Clinic Day (Yesterday)

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

Counts:
WBC -
Hgb -
Platelets -
Neutrophil - 1300

Tuesday, October 26, 2010

Halloween Festivities

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!

Thursday, October 14, 2010

Clinic Day (Yesterday)

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.

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.

Wednesday, October 6, 2010

Unplanned Visit to the Clinic.

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!

Wednesday, September 29, 2010

Clinic Day.

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

Monday, September 27, 2010

Last peeps of summer weather.

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!

Wednesday, September 15, 2010

Clinic Day.

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!

Sunday, September 12, 2010

Flashes of Hope

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.

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School is a hit!

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.

Tuesday, September 7, 2010

Our Little School Girls!

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.

Friday, September 3, 2010

Neutrophil Dance Worked!

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

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

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

Tuesday, August 31, 2010

Not so Happy. Clinic Day.

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

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

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

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

The Happy.

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!









Thursday, August 26, 2010

We HEART Art!

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

Wednesday, August 25, 2010

Clinic Day.

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!

Summer is ending.

The weather is changing, there is a nice chill in the air in the morning. That always reminds me of the bus stop when I was a kid. All the kids are excited for school to start, as are parents. Iza and Mimi will be starting school September 7th! So crazy. We have been filling the days with lots of play and small outings here and there.

This weekend Dan played in a charity soccer tournament and we all spent the day outside cheering his team on. Daddy did not with the "Realllly Giant" Trophy but we had a great day outside seeing friends. Mimi grabbed my camera and took some pictures and I just realized there was not a picture of her from that day.

Iza, the soccer player and Magi striking a pose for Mimi.

Wednesday, August 18, 2010

Busy, Busy and Clinic Day.

We had a jam packed couple of days. Nana and Pops were visiting so the girls got to hang out with them. We celebrated another wedding. Congrats A & R!!! We made our annual summer trip to Roger Williams Park Zoo in RI, and visited with friends near by. We have been keeping busy and Mimi has been keeping up but the last couple of days I have noticed she was easily irritated and quite moody which made me bring out the thermometer more often. Today we had clinic and I wonder if she was acting a bit off because of her counts. Since the ANC is below 500 all chemo pills are on hold until next week when we go in to check counts again.

Counts:
WBC - 1.31
Hgb - 11.5
Platelets - 188
Neutrophil - 410


Roger Williams Park Zoo 2010

One Very Lucky Boy & Six Lovely Little Ladies.

Tuesday, August 10, 2010

A year ago today...

I was in the hospital unable to breathe and unable to stop the from tears coming. I was scared. I remember every detail like it just happened down to every nurse and doctor I spoke with and what Mimi was wearing her heart tee and 3T shorts that matched one of the hearts. I remember crying in the hallway and one of the sweetest nurses came up to me and said "We are going to kick this thing right in the ass!" Over the past year that is what we have been doing. We have all changed, Mimi has become a mature five year old that maybe I would not notice as much if she did not have a twin. Iza has shown more emotions some good and some not so much. Magi has grown alot too, I often feel bad she missed out on mommy time during the first six months of Mimi's treatment but instead of dwelling on it I am trying to make it up to her even if it means watching the Barney Zoo DVD and singing the songs with her, over and over.

All summer I have been dreading August. I am not sure why it was just a strange feeling of anxiety and lots of undefined emotions. Well the day happened and it was good, we did our regular things.

Today, Mimi and Iza won summer reading prizes at the library. Iza picked out a really neat book on Oceans and all it's creatures that came with a stuffed whale. Mimi picked out a Sponge Bob collection (yey, I am rolling my eyes) she read the book on the way home, since I won't read it she said she can read it herself now, goober. Magi was not too happy leaving the library empty handed this time but both girls quickly shared some of their prizes which stopped the possible tantrum in the large echoing library entrance.

Teamwork at Skinner Mountain Park a couple of weekends ago.

Friday, August 6, 2010

Day 3 of Steroids.

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

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

Wednesday, August 4, 2010

Clinic Day.

Mimi got Vincristine, while getting her toes rubbed. Iza came along to clinic and they both got to do some painting crafts with the new child life specialist. They made frames for Nana and Pops who are visiting from Florida this week!

Counts:
WBC - 1.35
Hgb - 11.4
Platelets - 134
Neutrophil - 630

Tuesday, August 3, 2010

Danced ALL night!

Super cute flower girls getting the party started!
Mimi made up for not dancing at the wedding in January. When the DJ started playing songs she did not come off the dance floor until he was putting his equipment away!


We finally got a family pic!
(it only took 500 shots...)

Happy Wedding and Honeymoon M & B, you did it!!!


Thursday, July 29, 2010

Clinic Day (Yesterday)

We made a quick trip to the clinic to check counts which were fine. Miss Magi got to go she was very excited to see Mimi's nurses who she got to play with at Six Flags last week (see photo). She thought her big sister was very brave at the clinic. After some foot massages and taking too many stickers we were back home for a day filled with fun in the sun and a Hannah over for a sleepover!

Counts:
WBC - 1.55
Hgb - 11.7
Platelets - 131
Neutrophil - 780

Ahhhhhh Shark!


Thanks Griffin's Friends for a fun day last weekend. I braved Six Flags with the three girls in the 600 Degree weather and the 200% humidity and the kid that SHOULD have been tired (Mimi) was the only one that kept saying "More, More!" It was a great day spent with some super awesome staff from the clinic!

Saturday, July 24, 2010

We HEART Camp Sunshine!!!

I was pretty sure we would have fun. We had so much more than that.

The drive to Maine was relaxing, perfect blue sky and green all around, all three monkeys sleeping. From the minute we parked the car to check in we had "yellow shirt" volunteers helping us in whatever we needed mostly running after Magi.

The energy through the whole camp was so positive everyone wanted to be there, to have fun and to make sure the kids were happy. Everyone there was on a road of uncertainty but with one goal, to live happy. Kids became friends instantly with other kids just like them and with counselors some who once were the kids at camp. I had the chance to meet parents going through similar challenges and be able to listen and even learn. I listened to a forum of teenage campers, some in treatment some siblings of cancer patients, all wise beyond their years sharing their fears as well as accomplishments. This week was much needed.

During the week we also had some celebrities at camp NESN employees came up to volunteer and have some fun with the kids, in the video you can see us in the background and a shot of Magi with Mike Wozowski.


click for larger image

All the campers decorated wooden wish boats, one night after dinner everyone met at the water and after their candle on the boat was lit they set them in the water and made a wish. I am not sure how I managed to get this photo since my eyes were filled with tears but I caught the moment Mimi wished.

Yey to smashmellows, campfires, songs, lots of silly bandz trading, new friends, naps, tree climbing, yummy food, chocolate milk with every meal, smiles, answers, paddle boats, ice cream, turkey dinner, all the wonderful volunteers who will hold a spacial place in our hearts. Tracy for being a Lapierre gal for the week ;) I can go on forever! The girls can't wait to go back!

THANK YOU CAMP SUNSHINE AND TO EVERYONE WHO MADE IT POSSIBLE!

video

Enjoy the video! We heard this sond LOTS of times during camp.

Friday, July 16, 2010

Packed.

After a rocky Wednesday everyone is looking good and feeling great.

So...
GPS charged.
Camera charged.
Pharmacy packed.

We are almost ready to start a week of fun!!!

Today we go to Six Flags for a picnic and some rides. Not the Superman ride although Mimi is convinced she grew enough since last month and is able to go on it. After a day of fun we are driving to auntie Tracy's house to hang out with some awesome aunties and Sunday morning we will drive up to Camp Sunshine in Maine.

We will miss you Daddy Dan, stay out of trouble! ;)

Wednesday, July 14, 2010

Clinic Day.

What a day.

First counts are not awful but not great either. I guess the good thing is they have gone up since last week just not by much. She took her Methotrexate tonight (it is taken once a week unless counts are under 500) and se will also take her nightly chemo pill and I am hoping that her counts will continue going up. I am trying to think positive for her, she is really looking forward to all the fun starting on Friday, we all are.

Today's Counts:
WBC - 2.07
Hgb - 11.3
Platelets - 175
Neutrophil - 620

Iza has been "off" for the last couple of days. Just extra whiny and throwing some tantrums that I was really thinking we were done listening to. She has also been sleep walking and all of this is just NOT sitting well with me. To top it off she was in tears tonight saying her head hurt alot, five minutes later she was throwing up for an hour. Dan gave her a shower and put her to bed at 5:30. I hope she is all better tomorrow morning.

And of course Magi had to join the show today... She fell asleep at 5 on the couch I transferred her to her bed and so far she is still there.

Tonight for the first night since Mimi started Maintenance I am going to bed at 8pm setting my alarm for 10 to give Mimi her pill. I have a feeling I might have some early risers in the morning.

Oh and one more thing the tooth fairy is coming tonight for Mimi!

Friday, July 9, 2010

Ice Cream for Breakfast?!


Give Kids the World is having their annual awareness and fundraising campaign, Ice Cream for Breakfast!

Donate and Share a Scoop of Hope! We have found a scoop perfect to fit everyone in the family, probably the best one is Bacon flavor, perfect since all Magi ate at GKTW was ice cream and bacon.

Here she is with her FAVORITE Chocolate Ice Cream.

Wednesday, July 7, 2010

Clinic Day.

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

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

Tuesday, July 6, 2010

Live Happy and Be Monkey!

This weekend felt like a vacation! Even though I worked a bit everyday we had a blast it was a perfect do nothing planned but have loads of fun weekend. Part of it was maybe that on Friday when Mimi did not feel well all day, I though we might not be doing anything at all, but when she woke up Saturday morning re-energized and ready to have fun that is exactly what we did and then some! You just never know what tomorrow will bring so live happy and be monkey!

loads of giggles SUN hugs & kisses movies pool sleeping in! puzzles pretzel m&ms auntie tracy staying up pedal/paddle boats burritos silly bandz



Friday, July 2, 2010

Tired.

That is how Mimi seems today. She woke up with some aches and pains, took an early nap, played for a bit so I thought she bounced back but she fell asleep again this afternoon and two and a half hours later is still sleeping. No fever though. I called clinic today so they are aware of her odd day. I am just hoping it does not turn into anything on this long weekend.

Monday, June 28, 2010

Goober Monkeys.

That's all. Just sharing some CHEEZE.

Thursday, June 24, 2010

Clinic Day.

We dropped Magi and her donut at Ciocia's house (my aunt) and the big girls and I headed over to clinic. Of course they needed donuts too and we also brought some for everyone at the clinic to share. Iza was very happy to be with Mimi today and thought her sister was brave to get her finger pricked for counts, although at first she closed her ears thinking Mimi would scream.

Today's Counts:
WBC - 2.26
Hgb - 11.6
Platelets - 157
Neutrophil - 1460

Tuesday, June 22, 2010

Sad and Happy!

When I give Mimi her nightly chemo pill, I wake her up sit her on my lap she opens her mouth takes a sip of water and goes to sleep. Last night I sat her up and she just started crying and said she did not want to take it, then she asked "How many more days do I have to take this pill?" It broke my heart, it took me over 20 minutes to convince her she needed to take it. The good thing is she did not remember any of it the next day...

We go to clinic tomorrow for counts and hoping for some good ones.

On a happier note, Summer Reading Started at the Library! We went today got our tee shirts and charts, the girls are so excited to fill their leaves for every hour they read. This years theme is GO GREEN!

Cheeze! Notice Iza's brand new missing tooth!

Sunday, June 20, 2010

Happy Daddy Day!

If the new American father feels bewildered and even defeated, let him take comfort from the fact that whatever he does in any fathering situation has a fifty percent chance of being right.
~Bill Cosby

Wednesday, June 16, 2010

"...and the Butterflies Fly Away"

If you have not heard that song, you must not be living in a house full of girls. We hear it a lot... times three!

For Christmas the girls got a Butterfly Garden we waited until it was warm out to send out our certificate for the butterfly larvae and their special food. It was the neatest thing to watch as the caterpillars grew and a couple of days later formed chrysalises. On Sunday, the day of the walk, they became beautiful butterflies, orange Painted Ladies, although the girls though they should have been purple. I am not sure who was more excited all the adults that were here watching them or the girls. It was pretty amazing, although they all came out of their chrysalises while no one was watching. I am pretty sure we will do this again!


This is the only one that stuck around and did not fly away, he was just hanging out and eating the watermelon.

Monday, June 14, 2010

Pain.

Mimi has been having back and hip pain since Saturday, in her words "I can just sit in the stroller for the walk so we don't have to call the doctor." Sunday I know she was hurting because at night she was grinding her teeth and during the walk she sat in the stroller for the most part. But did not let any of the pain spoil her super awesome time! This morning she had tears in her eyes and asked if I could call the clinic. We got the okay for Tylenol and I also put warm towels on her back. The pain came back after lunchtime, after another call to the clinic we got some stronger pain meds but Mimi said she will wait until it hurts "a lot, a lot" to take them. She has a high tolerance for pain which I have yet to figure out if that is a good thing or not...

Sunday, June 13, 2010

A Walk in the Park. WoW. Just WoW!

First I want to Thank all the people that were able to walk this morning! We were one MONKEY of a team! We were very excited to be a part of this fundraiser and with the help of some amazing people we were able to raise over $6000! How awesome is that?!


Click for larger image


We hope everyone had a great time walking! A big applause to everyone who contributed and helped us reach our goal plus some, Stacey who raised over $1000, James M. who caught up to Stacey as well! Hannah who was in surgery with a broken arm the day before the walk but came to support her buddy! Everyone who traveled getting up super early to cheer with us, all the shoulders that literally carried Mimi, Iza and Magi. This was awesome!!! We were on the news but I guess a crying mom did not make it on there, I was doing really well until I was asked to tell them about Mimi's journey, thank goodness for Dan being quick!
Thank You to today's Purple Sock Monkey Walkers and Team Members!!!
Mina
Kate, Ella & Lily, Audrey & Caeli
Andre & Marcella
Ashley & Ricco
Steven, Jess, Hannah & Norah
Carol
Elena & Clover
Ela
Shannon, Ainsley & Cash
Chris & Meg
Vic & Eryn
Erica
Roya & Haley
Stacey
Gene & Linda
James
Sherri
Tracy
Sarah, Lesley, Tate & Gabriel
Mary
Frito Lay
Penny
Leidy, Roberto, Amaraya & Penelope
Heather

Link to our page

Tuesday, June 8, 2010

Clinic Day.

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

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

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

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

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


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

Monday, June 7, 2010

Kindergarten will start...

September 7th!

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

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


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

Wednesday, June 2, 2010

June is here!

The girls standing under the Giant Basketball Tower at The Basketball Hall of Fame. also the home of Cold Stone Ice Cream, according to them that is what people need to eat on their "Married" day.

June 2nd is a great day!
13 years since my Senior Prom with Dan.
Our 8th Wedding Anniversary.


photo by Mimi


Iza and Mimi's 5 1/2 Birthday! And they think they are super lucky because they found four-leaf clovers.



Three robin eggs hatched outside of Magi's bedroom window. We sneaked a peek when the mommy bird flew off to get some food. Here is a video we were able to get Iza was taking it while on my shoulders.

video

Our Caterpillars are making their way up in their well covered cups, which means soon we can transfer the chrysalis/cocoons to their butterfly home.

June is the best!