Tuesday-- January 26th

It has been a while since I've written...

Thomas had a nice birthday. I got to go into school to read a story to his class and hand out a little party treat. I brought in the book, "Walter The Farting Dog." Before I started the story, I asked who has a dog. They raised their hands. Then I asked them if their dog farts. You should've seen their faces and heard their gasps and giggles! This book was given to Maddie by one of her teachers and was actually on the New York Times Best Seller list for a while. Thomas was so proud and the kids thought it was hysterical!

Thomas had only a handful of pals over after school for his party. We would've loved to invite everyone, but then it gets crazy. So, they played Musical Chairs, Simon Says, had a donut eating contest off of the string, and of course, Pin The Nose On The Clown. William had the same old fashioned kind of party last year and this was what Thomas wanted. I don't know what I was thinking when I put the "Pin The Nose On The Clown" game away after the last time it was used. It was duct taped together, ripped in various spots, and the noses had been used repeatedly. It was the ugliest thing you ever saw, but it worked. It went into the trash after this party! At one point in the party, William thought he'd step it up and declared a dance off! He turned his IPOD tunes on, full blast, and the whole group was dancing in the kitchen. It was very cute! William got the party hoppin'!

After his big day, Thomas climbed into the bath tub. I said, "Thomas, I can't believe you're 6. Do you feel bigger?" He said, "Yes! I don't even fit in the bath now!" He did the night before, but now that he turned 6, he didn't fit.

We have really been tired of the snow and rain. Although, it is nice when we're all hanging out inside, when the kids aren't bickering, that is. The other day, Thomas came home from school, got under a blanket on the couch and said, "I love our cozy house." I thought that was so sweet.

Michael has been enjoying the after school ski program. He snowboards. I'm sure he's gotten quite good by now. Ernie took William and Thomas skiing for a night last weekend. He says they're doing really well. William is a fearless daredevil. He likes to attempt the jumps and be off on his own. I'm glad Thomas has taken a liking to skiing. He didn't like it last year when we tried. I'm anxious to get out with them all and see how good they've gotten. I don't ski, but I'll watch from the sidelines and go tubing.

So, our Maddie girl still leaves us signs to let us know she is with us every day...

Had my friend, Tammy, over the other night, with her two girls. They wanted to see Maddie's room, so I took them upstairs. I was telling her stories about all the things in her room, and then walked her to the window, to show her the rooftop, where Maddie started the tradition of sitting on. I lifted the window, and we both looked out at the same time. We both gasped at what we saw. Right in the snow, on the rooftop outside her window, was a heart shaped leaf embedded in the snow! It was unbelievable! We were speechless. The most unbelievable part of it, was that I had been asking Maddie for about a week, to leave a heart on my roof top or hers. I kept telling her how cool it would be to look out the window one morning and get a heart sign from her. Everyone looked outside and saw the same thing. It was awesome! Of course I took a picture to add to the collection.

A few days earlier, Ernie left for work but came back in to tell me to look outside the window at the pond. The ice is frozen, but in one area, it melted away in the shape of a big heart! Took a picture of that one too!

OK, another one...

We took the kids to the mall this weekend, just to get out and walk around. Afterwards, we took them out to eat. We went to the same restaurant we went to last Dec., when I got a spaghetti sauce heart splatter on my white sweater. We were talking about that and Ernie said, "Too bad she didn't leave us a heart this time." So, as he said that, we all looked around at the table top and there it was! A heart shaped spaghetti sauce stain on Thomas' paper placemat! Got a picture of that one too. Actually, ripped the heart off and brought it home. I know, this all sounds so crazy but it is so true! I do promise to compile and post the pictures. My sister and her kids get hearts all the time, and I have received pictures from friends who have gotten hearts. It's amazing. We're not crazy - we're blessed!

I took William and Thomas to go watch my niece, Abby, get her ears pierced this weekend. It was hard going back to that store, where Maddie had her ears done. It took Maddie three visits to finally get it done! Felt like just yesterday in a lot of ways, when I was there encouraging her. I had her earrings in my pocket, the ones she had her ears pierced with, just in case Jeanne wanted to use them and the store said ok. They're the little pink, sparkling, daisy ones. Unfortunately, the store doesn't allow that. So, Abby did it and she looks adorable. Jeanne said that Abby had been saying she wanted heart earrings, but that wasn't an option. Well, as we were leaving, Jeanne bent down to pick something up off the floor. When she turned it over, it was a pair of pink and yellow heart earrings, with butterflies on the packaging! Come on! Maddie was with us, knew what Abby wanted, and made sure she got them. Jeanne bought the earrings!

A friend of mine, Cindy, wrote these words a while back, while thinking about Maddie. I have held onto them and don't think I ever posted them on the webiste. I think they're beautiful and so perfect:

I arrived to Heaven safe and sound
I peer thru the clouds as you walk on Earths ground
Balloons sent to me, high in the sky
I know your reason, you love me that's why
The hawk that I send you soars high above
Reminding you of my undying love
A year nearly past, and when you fall apart
remember the tears I changed to a heart

Thank you Cindy.

Please pray for Irene Reilly's son, Andrew, who started his chemotherapy on 1/12. Thank you!

In closing, I'd just like you all to know that it's PMC time again! Can't believe it's here already. I'll be riding again this year with our team, Pedals For Pediatrics. Last year's ride was such an amazing, emotional experience. We'll (Colleen and Frank Duffy, Maura and Mike Thursby, and Ernie and I) be hosting our Cocktails for A Cure party again, on March 6th. It was such a fun event last year and it will be even better this year (more seating and an extra bar!). I will post a copy of the invite online or you can email me if you'd like to attend (K.Savoie@verizon.net). I hope everyone who came last year will be able to attend again this year. We have already seen our team contributions being put into action. There is now a washer/dryer set right on the Children's oncology floor, and the floor is being redesigned to have all single, private rooms, and all be handicap adaptable. This is HUGE! All so long overdue. So much more goodness will coming from our team efforts. If you would like to contribute to my ride, I would greatly appreciate it. It's always so hard to ask people for money, but you all know where it's going! No dollar amount is too small. You can log onto pmc.org, go under Make A Donation, then online giving, and search under my name to contribute on-line (I have to update my profile from last year), or you can mail a check to me, made out to PMC Jimmy Fund. If you'd like to learn more about Pedals For Pediatrics, you can pull up the website: www.pedalsforpediatrics.org. Thank you!!

Wednesday -- January 13th

Tomorrow is Thomas' birthday! He is going to be 6, although he looks like he's 8! Seems like so long ago when he was my little baby. Sat on Michael's bed a few days ago, opened the laptop and pulled up a video Ernie had made for me for Mother's Day ('05 I think). It's adorable. The kids are in our driveway, writing messages to me in chalk, driving the Barbie jeep, talking...

Thomas is a little guy, walking around in his one piece suit, William is smiling throughout the video, as he always did, Maddie with her pretty shoulder length brown hair, is helping coordinate everything and taking care of Thomas, Michael, the big brother, is sweet, smart, and enthusiastic about the whole production. Ernie interviews them all and their answers are priceless. I am so glad we have that video.

Michael starts Ski Club after school today. I'm very excited for him. It will be a great time with school friends. It's once a week for a few weeks. Can't wait to hear all about it when he gets home tonight.

I started "ZUMBA" class last night. It's an exercise class. A few friends signed up with me, but couldn't make it last night, so I went alone. Stood in the back of the room, not knowing what to expect and the others had done the class before. OK, I am definitely not as coordinated as I thought I was. The class is more like dancing, to Latin music. Sort of went like this... "Now do the Salsa!" What?! How do you do the salsa?! "Now faster!" Slow down! "Now let it go Ladies! Let everything jiggle!" Oh, it's jigglin' alright, but probably not the way it's supposed to. "Now move it like this, that's right, feel it, very sexy." Sexy?! I feel like an idiot! Man, I hope nobody's looking in the windows! "Now faster ladies!" Slow down! "Squat down as far as you can go. Feel it. Hold it." Think I just heard my knee pop...uh oh, feelin' kinda gassy. Hope we get up soon! OK, so it was the first night. I'll catch on. Can't wait for friends to join me tomorrow night so I'm not the only one there looking like an idiot!

It has been so incredibly cold that the boys don't even want to go outside to play. However, after our last snowfall, I actually did bundle up in snow gear and walk down the road with William and Thomas, to go tubing/sledding on the new road, where there is a huge dirt hill in the new development. Now that it was covered in snow, I thought it would be a great hill. BIG mistake! Boulders all underneath the snow, which of course, I ran over! First run, I sat on a double sled with William and we were fine. Next, I used the plastic saucer...OOOWWWW!! Wacked my elbow on a rock, then flew onto a boulder, landing on my tail bone! Wow, that was fun! Realized that hill was not a good idea and dragged the boys home. Could barely walk! Couldn't sit for days!

William and Thomas did play outside for a bit during the snow. I stayed in, nice and warm with Michael, until the doorbell rang repeatedly and I heard Thomas screaming for me. I ran and answered the door. There was Thomas, staring at me, wide eyed, screaming, "William's head is stuck in the snow!" What!?!? I ran out in my slippers and there was William with his head in a snow bank and his feet wildly kicking. As I got closer, he pulled his head out and the two boys starting cracking up! Yeh, that was really funny...So, I yelled at them for "crying wolf" and made my way back into the house, in my snow covered slippers.

Let's see, what else?

Went down to visit with Maddie last week and as I was sitting there, decided to make a snowman for/with her. I hate to play in the snow, so Maddie must have been motivating me. There I was, in the cemetery, rolling a snowman! It was a quiet, peaceful day, and I talked to Maddie all the while making it. It turned out really cute. Not big, just right. I needed to make the eyes and took one of the butterfly ornaments from her Xmas tree there and broke it onto parts. I used the red body as the nose and an antenna to make a curved smiling mouth. Next, I cut two pieces of her deflated foil balloon, crumpled them into tiny balls and had the eyes. Then I took two tiny sticks from her plants for the arms. It was so cute but needed a finishing touch. Took the pink butterfly off her Xmas tree and clipped it onto the snowman's arm. It was perfect! Wish I took a picture. It melted within a few days.

I sat and talked with Maddie and then a woman pulled in. I had never met her before. She came over to me with tears in her eyes and I told her what I was doing. She introduced herself and wanted to share a story with me. She told me how her daughter, a classmate of Maddie's, was having a tough time fitting in with some of the girls at school, and how my Maddie approached her and invited her to play. She told her she didn't have to be alone. I started to cry. I was so proud of my girl. That was something Maddie always did. She always took care of the underdog. She always reached out. She was the bald girl with cancer, but she wanted to take care of others. I was so grateful to this woman for sharing this Maddie story with me because it's another life I know Maddie touched in such a positive way, and I am so proud. I know that little girl and her Mom will never forget my Maddie or the kindness she showed.

I was dusting Maddie's room last weekend. It hadn't been dusted in a while. That was really hard. I studied every little trinket on her shelf and out everything back where she had it. I dusted her pictures and studied her beautiful face. I read all her little notes tacked to her tack board. I brushed her wig and set it back on her night stand. I straightened her bed, the way she did every morning. Propped her little guitar back up in its corner. I kept waiting for her to run in and yell at me, that I was messing everything up! Yell at me to get out of her room. She never liked me going in there to straighten up, but I know she appreciates it now, that I am taking care of her things for her. It was all so hard, but one of the hardest was reading her notes she put in her little wish box. I had read them before, but reading them again is still so painful. Each card says at the top "MY WISH" and then Maddie wrote several wishes: "Maddie gets better," "I hope I get better," "Maddie gets better quick," "I hope I get better really soon," "I hope God is waching over me because I could really use someone to talk to alot." Just breaks my heart.

Anyway, that same night, William stood at the kitchen island and wrote a little note, then added a sticker - a pink heart with yellow wings, to it. His note read, "I will never forget you Maddie." I tacked it to her tack board in her bedroom.

I want to share a letter that was written by our dear friend, Kelley. She was a patient with Maddie, and the two became fast and special friends. Today, Kelley is healthy and happy, and applying for college! As I sit here struggling, trying to make sense of it all, I do know that Maddie made lasting impressions that will never fade. That is one thing that I know for sure. Our memories and gifts from Maddie are ours forever. Nothing can take that away...

Kelley Bernard
College Admittance Essay

I will never forget April 25th 2007. That was the day that I went from a normal 15 year old finishing up my freshman year of high school, to a 15 year old cancer patient fighting for my life. The way I felt on that day is forever burned into my memory. The day the doctor, a woman I had only met the day before, told me that they found leukemia in my bone marrow and I would have to start treatment immediately. I still remember how I could feel my face heat up, how the room began spinning, and how I couldn’t hear anything around me except the questions that were racing through my mind; was I going to lose my friends? Was I going to lose my hair? Was I going to lose my life? I was suddenly thrust into this lifestyle that was completely unknown to me, filled with uncertainty, fear, and the feeling of not knowing what was going to happen next. I was immediately sent into surgery in order start chemotherapy even before I had time to tell my family that I was sick. Within the first few weeks of treatment I had lost all of my energy, all of my hair, and I was always nauseous. I couldn’t even walk without someone to hold on to for support. When I had almost completely lost motivation, I met Maddie.

Maddie Savoie was nine years old and my first “roommate” on the oncology floor at Children’s Hospital Boston. Maddie was bald and sick, but she didn’t act like she was. The first time we met, she walked into our room with a warm smile and a twinkle in her eye. She pulled back the curtain that was separating our beds , and asked me what my name was and how many “webkinz” I had. She taught me that you could still relax and laugh and enjoy life, even while going through something so difficult. Meeting someone who could still be so happy and so carefree in this “cancer world” gave me hope that everything was going to be okay. Maddie really inspired me to keep hope and to not give up. She helped me to regain my “fighter” mentality, and because of her, I began to take every day’s challenges and side effects with the courage that she had unknowingly showed me.

I didn’t go back to school freshman year, and I missed my entire sophomore year of high school because I was either in the hospital, or at home feeling like I should be in the hospital. The first 9 months of treatment were a complete blur because I spent every moment wishing that that day would end, and hoping that I would feel just a little better the next. Some of the only bright moments that I can remember from those dark months are ones that had Maddie in them. We became roommates every time that the two of us overlapped in the hospital, and although there was a 6 year age gap between us, I felt that I could be myself around her without worrying what she would think of my bald head or my weak body. We would sneak into the medical closet and steal supplies to play tricks on the nurses, and we would watch “The Bachelor” in our room while eating popcorn out of the empty “barf buckets”. She taught me all the tricks on “6north”, such as the time the cafeteria workers brought up the good popsicles, and what medicines helped the best with nausea and mouth sores. Whenever I received treatment at the outpatient Jimmy Fund clinic, Maddie always knew how to cheer me up when I wasn’t feeling great. One day I was in the clinic, getting chemo and feeling really crummy, and she walked into my room rocking her signature look (a pink corduroy hat tipped to the side) and gave me a hat that matched hers. I spent the rest of the day in that hat because I felt that maybe it could give me a little of her optimism and her bravery. Those traits were just Maddie, though, and she truly showed them off in the summer of 2008, when her family was told that Maddie’s cancer had spread into her bone marrow. I remember visiting her that September and seeing how she had decorated her room on the bone marrow transplant floor. There were hopeful quotes everywhere and her window had “Believe” in big letters written on it. Maddie was sleeping, but I remember thinking how amazing she was and how she was so brave for someone so young. When I left her room that day, I remember thinking about how she had made more of a difference in so many people’s lives in her 10 years, then most people make in their entire lifetime. I didn’t know, at the time, that that would be the last time I saw her.

Maddie Savoie passed away on October 16th of 2008. Even though we only knew each other for a year and a half, I felt like we had become lifelong friends. We shared a life’s challenge, and the knowledge of a world that no one should have to be a part of. She touched my life in a bigger way than either of us expected. Today I am 17 years old and 5 months off of cancer treatment, and I owe a big part of my survival in the “cancer world” to her.

 

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