Posts from October
Today Maddie is off to school. She's very excited to be going as Mrs. Daley is having a party in class this afternoon! The boys and Mom are heading out for their own special little treat this morning...flu shots with Dr. Fox. Mom raided Maddie's Magic Cream for the boys. Hopefully she put it on the right arm. Happy Halloween to everyone!
The Dana Farber gave us four tickets to the Boston Ballet for this Saturday. Maddie invited Molly and her Mom, so the four of us went to the show. The girls brought along their umbrellas and stuffed animals and we got comfortable in our balcony seats. We lasted about 45 minutes and the girls were ready to go. They both said they "didn't get it!" Molly came back to the house to play for a little bit instead and then the visiting nurse came for Maddie. We all got up early Sunday morning to say good bye to Aunt Nan. The kids will miss the Crazy Pirate! Nan bought a pirate costume the day she arrived and had lots of fun with the kids. Thank you Aunt Nan! Maddie played for a little while next door with Kristen and Lauren Altmeyer, and then in the afternoon we went to a Halloween party at the Morgan's house! It was a great time for the kids - lots of goodies and fun games! No school for Maddie today. The nurse is coming over between 11-12 and then she'll see Mrs. Taylor this afternoon.
Maddie had a very long day at clinic, but it was filled with fun. Caroline was there, so the girls had a few giggles together and Maddie got to watch Caroline take a guitar lesson. Next week, Caroline and Maddie will take lessons together - Maddie on the piano. She's excited about that. A whole team of police officers - Chiefs of Police, Captains, Sergeants, Lieutenants, from different towns, came to the clinic to visit the kids. It was great for the kids.
Maddie came home with police patches from Canton, Randolph, New Bedford, Lunenburg, among others. Her picture was taken several times, so I am trying to track down copies. Maddie had to get her flu shot, so she wasn't too happy about that - the anticipation hurt for hours, the shot hurt for a few seconds! We got home around 5:30pm and Mrs. Taylor came over for a tutoring session. Maddie was hoping to go to school today but was up sick all night, so we'll take it easy today.
Maddie didn't make it to school yesterday. She was too worn out from the full day before, but she hopes to go tomorrow. We are off to clinic today and then Mrs. Taylor will come over for a tutoring session later this afternoon. We are bringing some homework sheets to clinic with us today so that Maddie can do a couple - knock off a few each day to get caught up. While she's doing that, I'll probably pass the time making a ghost doorknob hanger, string together a "glow in the dark" beaded necklace, or decorate a pumpkin mask...whatever fancy Halloween project they have going at the arts and crafts table today! Dad is off to visit Lauren at UDel for the day. Go Blue Hens!
Maddie was able to go to schoool yesterday and had a great day. She was so excited to be with her friends again. She has some catching up to do on her school work but is working hard to do that. We had a nice family birthday celebration for Michael last night and by the end of the night Maddie was very over-tired, but plans on going to school again today!
Maddie is feeling better today. She had a visit from the home care nurse, received her chemo, and had her blood taken for her counts. Just got a phone call letting us know that her counts are up high enough for her to go to school tomorrow. She is very excited about that! Maddie spent the day coloring, drawing, and writing a beautiful prayer. Ernie posted it on the home page - "Maddie's Prayer." Dad just took Maddie out to Toys R Us. She wanted to pick out and buy with her own money, a birthday present for Michael. He turns 10 tomorrow!
OK Paul, I have finally let a picture of myself be put on the website. I hope all enjoy it. Wasn't exactly looking my finest, but when duty calls...Anyway, today was ok. Maddie still a little tired, but feeling a little better. Thought we'd get out to the pumpkin patch today, but maybe tomorrow... Home visiting nurse came today. She, too, was very nice. Maddie loves handing out her Maddie bracelets to all of the nurses who come to the house. Mammy and Pop Pop (my parents) came over for dinner. They were at Aunt Jeanne's in Franklin, for the day. They will have lunch with us tomorrow before heading back to CT. tomorrow. OK, that's it for tonight. Hope all enjoyed today's Fall weather. we'll talk in the morning. Oh, by the way, I really don't look like that...Love K
Long day at clinic yesterday, but great news - Maddie's 2nd bone marrow biopsy came back 100% clean!!! We're right where we should be. In addition, they believe the cramping Maddie has been having is an unfortunate, but normal, side effect of the chemo. They don't think it's a build up of toxicity, at least at this point, so they want to proceed with the course. We will give her pain meds when needed and hope that her body adjusts. Maddie did have very low counts and needed a transfusion, which made for the long day. Maddie got to pass some time getting a piano lesson from her bed! Laurie,the music therapist, came by and said she would be in every Thursday if Maddie is interested, and she is! She learned so quickly and smiled from ear to ear.
Clinic day - anxious for some answers. Maddie still having a lot of cramping...Hopefully after clinic today she will feel up to another session with Mrs. Taylor. Took the kids to Friendly's, at the Wrentham Outlets, after school to enjoy the beautiful day.It was great watching them all walk around together and I even loved letting them drain my wallet of every quarter so that they could ride the little quarter rides. Trying to get the bracelets out to people- ordering more
Maddie had an ok day yesterday. She still didn't feel great, but was able to get a tutoring session in with Mrs. Taylor! There's a great picture of them on the website today. Anxious to go to clinic tomorrow. Maddie has been getting a lot of cramps/muscle spasms in her arms and legs, the past few days, a possible side effect of the drugs, a possible sign that her body is not tolerating the high doses. We were told this could happen, and if it does, her treatment may have to be changed. So, Thursday she will be evaluated and we'll go from there.
Maddie slept for a big chunk of the day yesterday. She just wasn't feeling too great. She wasn't able to meet with Mrs. Taylor, but hopefully today she will feel up to it. The home visiting nurse came out yesterday and was very nice. It's a different one each time. She left Maddie with a lot of pretty stickers. Maddie did have a burst of energy at one point and played treasure hunt with William and Thomas. She hid a little treasure chest filled with coins in the house and they had to follow her signs and map to find it. They had a lot of fun. Spoke with Maddie's doctor last night. Still no final word on her bone marrow results. Have a great day.
Maddie was tired and did not feel too great all weekend, but she still enjoyed answering the doorbell and retrieving the goodie bags left behind by Ghosters! The visiting nurse came out on Saturday and another comes today. It has made such a difference in our routine. It's SO much better than driving to the clinic 3 days a week. Hopefully Maddie will feel up to a tutoring session with Mrs. Taylor today.
Maddie made it home Friday evening. A record time for us. She did extremely well overall, but she's still tired and a bit neasous from the chemo. Last night we were fortunate enough to make it over to the haunted train ride and we had a blast. We haven't had any confirmations yet on the biopsy but we hope to hear something by tomorrow. Keep us in your prayers!
Yesterday we got the first results back from Maddie's bone marrow biopsy. It came back clean, which means they didn't see any cancer cells. We have to wait for the second test results to confirm, but we are thrilled we made the marks. We all said a thank you prayer.
So far we've had a pretty good chemo round. Maddie was extremely nervous about it because she had such a hard time the first time she had this cycle of chemo. They tried out a new 'Magic Pill' on her and she did great with it. (Dad wants to know why all the magic medicine in this place is pink.) If things go well, she might even be out tonight.
The first half of yesterday was spent at Dana Farber getting ready. Both Caroline and Chelsie were there. It was great to see them both. It was supposed to be Chelsie's last round of chemo, but due to a shortage of beds at the hospital she was bumped and wasn't able to get it. She was crushed and we all felt terrible for her. Hopefully something will open up today or Monday at the latest. We didn't check in to Children's until almost 6pm. Maddie's roomie is a cute little two-year-old, Elizabeth. She's loads of fun and sleeps like a rock. We also met Michael's parents, who are from Norfolk as well. He's five and his room is just two doors down from us and I'm sure we'll get to visit with him later today.
Maddie woke up late yesterday and then asked me to drive her to school. She really wanted to go. She stayed until around 2 and then was ready to come home. Her back was bothering her from yesterday. She said it was hurting for a while, but that she didn't want to come home. Dad and Maddie packing now for the hospital. Maddie's bummed she has to go in again. She remembers this cycle as the one that made her sick a lot, but we've explained that hopefully, her body will handle this treatment a little better and that she'll be fine. She is scheduled for 3 days, but as we know from the 1st round, it could become 6-7. Keeping our fingers crossed. Hoping to see some of our friends at the hospital during our stay, so that always helps pass the time. Aunt Nan is coming from Michigan this afternoon to stay and help. We're looking forward to seeing her.
Maddie's bracelets came in yesterday, so we'll be getting those out to everyone as soon as we can. Have a great day!
Yesterday was a long day. Maddie was very nervous but we passed the time waiting for the test by coloring pretty leaves and pumpkins in the clinic resource room, a room we had never been in before. The staff was very warm and friendly and Maddie loved putting stickers all over their faces and knitted hats on their heads (the wrong sizes, of course!). You should see the baskets of beautifully hand knitted hats that people so graciously make and donate. They're beautiful.
We won't have results until Friday. Praying for a good result...Our Love
This is a big day; Maddie is having a bone marrow biopsy to see how the chemo is doing. We probably won't get the results until tomorrow. Maddie is very nervous about being put to sleep. Outwardly you would never guess Maddie has cancer. She looks healthy and the pain in her hips and back are completely gone. She is as healthy and energized as the EverReady bunny and just keeps going and going and going...so we're hopeful everything is on track. We're anxious and nervous and just want to get through this day and pray for good news!!
Everyone is in great spirits. We're off to the yard sale on Timberline Road, which despite being blocked off, is already jammed with cars, tables and people. We'll send updates later today.
9pm - Winding down from a busy day at the yard sale, followed by a great get together at the Janice and Ed's house. For all of you involved in any way with today's events, we cannot say thank you enough! Thank you is an understatement for the love and gratitutde we feel for you all - friends and strangers ( now our new friends) alike! Walking down the street this morning, realizing it was all for our child, was so breathtaking and surreal and left us speechlees. Throughout all of this I keep telling myself to believe and trust in God, that there must be reason that will some day be revealed. Although I still don't have the answers I need, it became so clear to me today that something is happening, that people have been touched in some special way of their own, and that we are so blessed to be surrounded with overwhelming love and support. We tried to get around to all of tables to introduce ourselves and say thank you, but if we missed anyone, please know that we are so incredibly grateful for your kindness, generosity, thoughtfulness, and support. What an amazing, uplifting day. There was so much love in the air that you couldn't help but smile and enjoy the perfect day that God delivered! Maddie felt good, Michael was proud to run his lemonade stand, William loves his new go-cart, and Thomas is now sleeping with his new dump truck parked next to his bed. The kids all came home with lots of new "junk," so we'll be having a yard sale tomorrow at 9am! Hope you can all make it. Ok, just kidding about the yard sale...but not the "junk!" Thanks friends! - Love Kristen
School Day. Maddie was very excited to join her classmates today and joyously waited for the bus to come. Yesterday she got to visit with both Caroline and Chelsea at Dana Farber. Maddie's counts are way up and we're looking forward to a great weekend.
Clinic Day. Caroline will be in as well so time will pass effortlessly. The boys are looking foward to another fun day with Mrs. Zicko, who also doubles as Williams preschool teacher. We've been notified Maddie's bracelets have shipped, but since they are coming all the way from China it may take a week or more to get them. We're hoping to see them on Saturday anyway.
It was so good to get home yesterday. On the way, Maddie and I stopped at Friendly's for a celebratory ice cream! That was a scary few days, starting with a rush to the hospital, fever, and hard time getting counts to come back up. Her numbers are slowly climbing and our next planned visit to clinic is for tomorrow. Maddie left the hospital with a smile. She drew dog pictures for all of the nurses and went around handing them out before we left. They all loved them and pinned them to their shirts. She's quite the artist. We're hoping for a quiet, relaxing day today...
Sorry for not getting this updated sooner. It has been hectic since Maddie went in the hospital Saturday. Maddie had a tough night but she is a fighter and despite predications she has made her counts (barely) so she can go home today. We are all very excited.
Maddie's Thoughts on Chalk were used as part of a presentation for people with Cancer. The presentation was at the University of Michigan in Dearborn this past weekend. We received the following review:
The 'Thoughts on Chalk' were a big hit at the conference. When it appeared on the powerpoint you could feel the room become very focused and inspired -- it was amazing. As I read the words that Maddie so beautifully created, many people were moved to tears. I know that her words reached many people on a deep level.
We are all very proud of her.
Maddie is feeling better today. She had a transfusion while she slept last night. After breakfast she went to visit her friend Caroline and they snuck off to a conference room and did paint-by-number cats. Maddie decided she could do just as good a job with 4 numbers as she could with 10. She was right! Maddie said to tell everyone she is sorry about the garage sale being rained out, but she said she knows God sent the rain along so she can be there next weekend. She also wishes her grandmother Mimi a very happy birthday.
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