Christmas Break

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.

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

"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...

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

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.

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