Bump in the OT road.

OT as in Off Treatment.

Mimi has been sailing through doing really well, her blood draws have been fine she has been feeling great. All the girls have been loving school, playing sports, and dancing. We have had so many great adventures and keeping busy that I have kind of ignored the blog...

About two months ago Mimi started complaining of blurry vision, very random, no pattern to it. Sometimes it lasts a minute sometimes five. We met with an opthamologist who did not see anything wrong, as far as the eye is concerned everything looks perfect, but given her medical history asked to see her again in March.

Three weeks ago she said sometimes she feels like she is upside down, not dizzy, just upside down. Blurry vision is still an issue. Then came random fevers, headaches and leg pain. I am pretty sure any cancer mom reading this knows what I was feeling... Her counts came back looking like it might be viral. But all these strange symptoms are enough to schedule a contrast MRI of the brain and a lumbar puncture.

We scheduled both after spending an awesome long weekend at Camp Sunshine enjoying the winter wonderland in Maine. All of us reconnected with friends and made new ones, welcomed new families who have just started their journey on this never ending roller coaster of pediatric cancer and some that are still on it and are able to share their experiences. It is pretty amazing to be in a room full of people the GET IT, not only for me but even the kids.

So this is just a bump in the road. We are being proactive and ruling everything out. Mysterious Mimi likes to keep everyone on their toes.

OXO

8.12.12 CRAPIVERSARY

In the pediatric cancer world today would be called a CRAPIVERSARY, three years ago today we received Mimi's official diagnosis. In some ways it feels like yesterday, the feeling of complete disbelief, anger, and devastation.  I look at Mimi now and she has grown so much physically and emotionally seems like ages ago that I looked at a tiny four year old about to start a battle with cancer. She kicked it in the butt and is forever stronger!

We have been making up for all of our lost summer days, we have crammed fun into every day, main reason for no updates to the blog. We have had so many great things going on that I will be sure to share! soon...

Half Year Mark.

At The Hole In The Wall Gang Camp

Six months of chemo free days. We had the best weekend to enjoying it at The Hole In The Wall Gang Camp in CT. This was our first visit at this camp and we are hooked! Friday we arrived at dinner time and settled in. Our Saturday was action packed, I started the day off with some yoga, met the kids and our wonderful Family Pal for a yummy breakfast and then some fishing, I took Iza to record a song in a fancy recording studio ( I can't wait until we get out CD!), Magi did one also, Mimi was loving fishing she would have stayed there all day!  Before lunch Magi and I had some time to squeeze in Archery, she is a big fan and asked for a bow an arrow at home, we might have to hold off on that just a little while. After lunch we rested up and dove right into some arts and crafts, all 4 rooms of it, it was a small heaven for us. The Tower was next on our list of things to do, a giant wall to climb, all three girls got their gear on without hesitation and waited their turn. All loved it (including me) the bonus was the long Zip line to get down from the tower, Magi chose not to go down the zip line and got lowered down, although said later she wished she "flew". Somewhere there was yoga for the kids, more arts and crafts, Dinner followed by lots of singing and dancing. The girls have lots of new songs to sing now.  The most awaited event was stage night. All the kids did such a great job getting out there and showing their talents, making us laugh, sing along and answer knock-knock jokes.Iza sang, Magi "played" on the piano, and all three did a fancy fashion show in prom dresses taped on with duck tape! Sunday we got up bright and early so we can enjoy every bit of camp before we had to leave. At breakfast all the Moms got special treatment since it was a mother's day at camp, it was so sweet, the dining hall was decorated in rose petals. All the kids came to us with cards, flowers and gifts, it was a very special day! During the whole weekend families were photographed by Hallmark Institute of Photography, before we left we were presented with a framed picture and a CD with images, the above picture is one of them. I am sure I am forgetting a bunch of things but as you can see we had an amazing time. Iza and Mimi are looking forward to spending time here as campers later on this summer, Magi has a couple of years before she is a camper.

Thank You The Hole In The Wall Gang Camp, Thank you to all the staff, our awesome Family Pals! 

OxOxOxO

Happppy Valentine's Day! We love Heart Day!

Two years ago we spent Valentine's day at the hospital Mimi had a fever and needed a platelet transfusion. Last year was the first year Iza and Mimi were in school and were SO excited to take Valentines and have a party at school, unfortunately Mimi got a fever in the middle of the night and to the hospital we went. She was so bummed. She did get a treats and Iza brought her Valentines from school, she also got to experience fake nails!

THIS year we made it a big one! Starting this morning Daddy made yummy breakfast for all the girls in the house, including Nana who was visiting from FL. We participated in Hilltown Families Valentine Exchange, making lots of cards and getting some great ones in mail.

This is the third year Mimi received a special Valentine from "Cali Ali Valentine", a mom of a cancer survivor pairs up her grade school students with a child in treatment. It is so thoughtful this year Mimi wrote a note back to her Valentine.

We made gift bags for everyone in class, lots of handmade cards. It was a heart making factory here last night! The girls also decided to make some cards for the Children's hospital and cupcakes for the nurses and staff.

2/14/10 Rockin' the Tattoos and Auntie Meg's boots! All done while the IV is running.




2/14/10 Getting Some platelets, the yellow bag on top of the IV.





2/14/2010 LOVE! Hearts sent to her from an elementary school in IL decorated her room.

2/11/2011 Opening her "Cali Ali Valentine" :)

2/14/11 NOT Happy about missing her Kindergarten Valentine's Day party but she got Nails!

Valentine's 2012!!! Guess who is who behind their Winged Hearts art project.

Miss MagiBoo and her Heart outfit - "It all matches! They all have hearts!"

Treatment Tree

Mimi had her monthly clinic visit after school Wednesday, all five of us went, we like to add chaos to everyones work day. The girls love going to see everyone at clinic. Mimi is well, not much to report, still dealing with dry skin and scalp but we got it under control with creams and shampoos. Hopefully when it starts getting nice out it won't be such an issue.

Counts 2/8/12
WBC - 5.3
Hgb - 13.3
Platelet - around 200
ANC - 1900

While at clinic got a wonderful surprise from Lisa (nurse) she gave Mimi a gem Tree filled with a collection of Swarowski crystals. Each bead representing a procedure or event while at clinic, such as beginning treatment, transfusions, port access, surgeries and so on. It is a gorgeous tree representing each child's unique journey through treatment. A big thanks to Griffin's Friends for sponsoring that and to the nurses at clinic for putting their love into it!

Mimi's Treatment Tree

Kids Helping Kids.

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!

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