Posts from January
Tuesday -January 30th
Yesterday Maddie didn't make it to school. She was tired from radiation, so she spent the day with me, William, and Thomas. We went to see Dr. Fox, our family pediatrician, for Thomas' 3 year check up. Maddie was so excited to go see Dr. Fox. She hadn't seen him since her diagnosis. Thomas passed his big physical with flying colors! Got all the shapes and colors correct and didn't need any shots! Phew!
Next we went shopping for a new coat for Maddie. Hope chewed a hole in the sleeve of her coat. Yep, I sure do love having a dog...Of course, while we were there, Thomas fell in love with a pair of Thomas the Tank Engine sneakers. We weren't gettting out of the store without them, no matter how many times I tried to hide them! Thank goodness, William was quite content with a gumball!
Monday -January 29th
Once again, we have been so touched by the kindness of others. Our friend Caroline turned 9 on Jan.10th. Instead of receiving gifts for her birthday, she collected a special gift for Maddie's medical fund. While it is hard for us to accept these amazing gifts, we're told by the parents that it really is a gift that touches both sides. We truly understand that and these gifts will continue to give. What is not used by us, will be donated to Dana Farber in Maddie's name, to help other children. Thank you Caroline for your generosity and thoughtfulness. What a great kid you are!
We had a nice weekend. We were so excited to get the extra time at home. Lauren came up to visit and Michael was awarded his yellow stripe at karate. He will attempt to earn his yellow belt this Saturday (watch out Dad). Maddie will be able to go to school this Mon., Tues., and Wed., before being admitted on Thursday. Aunt Denise is coming back from California on Wed, to help us out this round.
Friday -January 26th
Maddie is home. We spent the day at clinic yesterday, planning for admittance, Maddie's numbers were good to go, but unfortunately, there were no beds available in the hospital. This happens from time to time and this is the first time we were bumped. Although we were ready to go and get this round over with, Maddie is glad to get an extra weekend at home, and a few more days at school. She will be admitted next Thursday.
We brought William and Thomas with us to clinic yesterday, assuming it would be a quick drop off of Ernie and Maddie, but 6 hours later, we had all had our fill! The boys held out pretty well, and got to experience it all and meet everyone.
Hope you all have a good weekend.
Wednesday -January 24th
Maddie was diagnosed 5 months ago today. So hard to believe...
We are finished with the re-staging tests. It was a very long couple of days. Maddie kept a smile throughout, and kept the nurses laughing. She was especially grateful that she didn't have to fast before any of the tests. I was so grateful too, because when she can't eat, she doesn't let me eat either!
Some pre-liminary results...her lungs look great. There is still a "mass" in her pelvis. We don't know exactly what it is. It could be scarring from the radiation, dead cells, live cells...Doctors will continue to review and we'll keep watching. There is a new small area of interest on her left foot, but the doctor says she's not overly concerned at this point. Doctors will consult on that as well.
Tomorrow Maddie goes to clinic for blood work tomorrow to determine if she will be ready for admittance for her next round.
Since Tuesday's entry, Maddie had a blood transfusion at clinic on Thursday, and then had a great weekend with her cousins. My niece, Abby, was baptized. So glad Maddie's counts were up and that she hadn't fevered, so she could be there too!
Michael and I had a great time Friday night at Family Bingo Night. Michael won a round! We were psyched!
Maddie feels good enough to go to school today, so I've gotta run to get her on the bus! We will keep you all posted on the results of Maddie's tests. Please continue to pray for continued positive results! Thank You!
Tuesday -January 23rd
I'm sorry we haven't updated the site in the past few days. It's been an incredibly busy. Maddie is redoing her staging tests this week. We need to get these done before her next round of chemo. She is being poked and prodded and rescanned and we hope to have a progress report before the end of the week. Outwardly Maddie seems to be doing better than she has ever been. She may even go in for her 5 day chemo round on Thursday. Her last chemo round was pushed out a week because of her bacterial infection, so we didn't expect her to be ready until February 1st. However, it looks like she may be ready on Thursday which would put us back on track again. Keep us in your prayers.
Saturday -January 20th
Last night I received a call from Don. Don heard about Maddie from a friend of a friend of Kristen's. He called to tell me he is a cancer survivor. Not just any cancer survivor but a Ewing Sarcoma survivor, which is the same type Maddie has. He contracted Ewing's back in 1968 when when he was 13. "I'm a statistical anomolie", he says. I think about it for a minute and I can't imagine what treatments were like back then.
Don called to ask if Maddie would be a Pedal Partner in the Pan-Massachusetts Challenge or PMC. For those who don't know, the PMC is a 192 mile bike ride from the western side of Massachusetts to the eastern most edge on the Cape. The PMC is the nations most successful athletic fund raising event and has raised more than $171 million dollars since it started 28 years ago. There are about 5,000 riders and 2,500 volunteers in this two-day event. This year they expect to raise $27 million dollars or about 50% of the Jimmy Fund's annual revenue.
Through the Pedal Partner program, PMC bicycle teams are matched up with and ride in honor of Jimmy Fund Clinic patients. They meet with the riders and their pictures are proudly placed along the route to motivate riders and spectators alike.
In addition to the big ride, local towns also sponsor smaller rides for the kids. Last year Michael raised $150 for the PMC kids ride. That was just before we found out about Maddie. Who would have thought...
Unfortunately I had to tell Don Maddie couldn't do it. MFS, which is one of the big corporate sponsors and also happens to be the place I work, just recently asked if she would be their Pedal Partner. It was quite a honor and we are looking forward to participating in it. We're also looking forward to Michael's PMC ride in Norfolk. I'll bet he raises a lot more money this year.
I did thank Don for thinking and supporting us. "I love your web site," Don said. "It's inspiring to read it". As he was about to hang up the phone Don also mentioned the one thing he always remembered from his childhood illness were the incredible things his parents did for him while he was sick. He told me it was something he would never forget. It was nice to think Maddie will have those thoughts one day too. I hope she also thinks of everyone else as well. The friends, family, co-workers and people like Don we don't even know. Without your prayers, cards, phone calls, meals, babysitting and support I don't think Kristen and I would be getting through this. We will always be indebted to you and, like Don, we will never forget.
Wednesday -January 17th
This week has been relatively quiet. Thomas had a good birthday on Sunday. He was excited to turn 3, but has yet to fulfill his promise to convert to big boy undies! He keeps telling me he'll put them on "in five minutes." It makes you wonder how often we, as Moms use that line when answering questions like....
"When are we going to be there?".
"When are they coming?" .
"How much longer 'til dinner's ready?" .
"When can we have desert?".
"When will I be done with my time-out?".
Isn't your answer always, "In five minutes". Or when we're marking the time....
"Hurry up, the bus is coming in 5 minutes!".
"We're late, class starts in 5 minutes!".
"Just get in the car, the post office closes in 5 minutes!".
"Just get in the car, the library closes in 5 minutes!".
"Dad will be home in 5 minutes!".
And, of course, our favorite....
"Stay in that time out chair for 5 minutes!".
Anyway, things this week have been pretty quiet. Maddie has very low blood counts, so we're hoping she stays fever free. However, Thomas has a fever, with an ear infection and a bronchial infection. Would love to write more, but Ernie has to publish this to the website and literally just told me to hurry up because he has to leave "In 5 minutes!".
Monday -January 15th
Every day Maddie and I get up at 5:00 am and drive into Boston for a 6:30 radiation appointment. We've been doing it for 6 weeks. The traffic is light, there is no backup of patients at the hospital and Maddie is able to get home in time for school if she is feeling up to it. When we get to the hospital I park on the 3rd floor in the handicapped parking area. There is one spot open for non-handicapped patients and since we're the first ones there we're always able to get it. It's next to the entrance and only a short walk from the car, which is importantant if you're just wearing pajamas and slippers in the middle of the winter.
We're usually done and back to the car by 7:15 . As we leave there is always one car parked next to ours. A green Jeep Cherokee. An older woman sits in it, patiently listening to the radio with the heat turned up until she's ready to start her day somewhere in the clinic.
At first we used wonder who this woman was and why she was there so early in the morning. I'm sure she thought the same of us, especially since Maddie was always in her her pink pajamas. One day she smiled and waved at Maddie and Maddie smiled and waved back. Each day we came out of the clinic and looked for our new friend, a bright smile widening on each of their faces whenever they spotted one another. Eventually we introduced ourselves. Her name was Denise and Maddie told her the story of how she had cancer and was undergoing chemo and radiation treatments. The next day Maddie brought her one of her Maddie Bracelets and presented it to her. Denise said she was honored to wear it.
A few weeks later we stopped seeing Denise. We watched for her but we didn't see her. It was just after New Year's and we thought perhaps she was on vacation. We were halfway down the exit ramp one morning when Maddie spotted her pulling in. "There she is", Maddie said excitedly. I stopped the car, put it in reverse, and quickly backed up the ramp to the parking area so we could say hello.
I could tell Denise was excited to see Maddie too. She parked quickly, leaving her car angled across two spaces. She opened her door, got out, and headed towards us. It was the first time we'd seen her outside the car. Maddie rolled down her window and asked her where she'd been. "I have a new leg", she replied. And then she told us all about it, how it was lighter than the one she had before and she had to re-learn to keep her balance on it.
I didn't think too much about it until I received the following email from Denise:
HI MY NAME IS DENISE I CAME TO KNOW MADDIE IN THE PARKING AREA. I WORK AT DFCI FOR 23 YEARS NOW. SHE HAS BRING SO MUCH HOPE TO ME, CAUSE I WAS FEELING SO DOWN ABOUT HAVEN TO USE A SCOOTER TO DO MY JOB NOW. I HAVE ONE LEG SENSE 1979. SO I AM GOING TO SMILE ALL THE TIME LIKE HER. SHE IS THE HOPE FOR ME KNOW. THANKS MADDIE FROM DENISE
As I read this I thought about Maddie and all the other kids with cancer. You can't help but be motivated when you see them. They are full of hope, and joy and courage. They radiate an inner strength and beauty. Spend some time in the presence of any of these kids and you will never quite be the same….especially when they smile at you.
Friday -January 12th
Maddie had a good day yesterday. She didn't have to be at radiation until 11am, as opposed to 6:30am, so she got to sleep in a little bit. After radiation we went to clinic for a blood draw and chemo. While there, Maddie hung out with her pal, Caroline. They had fun playing with Maddie's new webkinz, "Kisses." The two of them are so fun to watch together. They share the same sense of humor and have the best sounding giggles.
Maddie only has one more radiation treatment scheduled for her hip and 19 more on her skull. She's excited to be finishing with one area. We go for re-staging tests again the week of the 21st, to see where things are at and then we'll take it from there...
I wish you could see Maddie on her good days...we're always late, so we have to run to wherever it is we're going. For some reason, Ernie's much better at getting anywhere on time. Anyway, starting from the parking garage, we run. We get into the building, and she's off! We race down the Bridge of Hope. It's a long hallway, painted with birds. She's usually several feet in front of me, laughing and running with her little hat on, as I chase her, pulling my wheeled bag along...she always beats me to the elevator. We both get in, I take a few deep breaths, we nudge each other, and try to get out of the elevator before the other, to make it to the finish line 1st...she always wins!
When we get to radiation or to clinic, Maddie always has her bright smile and everyone there is always so happy to see her. She has developed such an amazing relationship with each individual person. She knows everyone's name and they all know hers. It is so fun to stand back, watch, and take it all in. She truly amazes me every day, on so many different levels. Going through all she is, she still always manages a smile and always brings a smile to everyone's face.
Maddie felt well enough to go to school on the bus with Michael this morning. It was so great to see them standing together at the end of the driveway waiting for the bus...
Michael got 100% on his test the other day. We were so proud of him! William just asked me to feel his muscles, because he is "growing stronger every day," and it's hard to believe Thomas will be 3 on Sunday! He says "no more diapers" when he's 3, and he's looking forward to wearing Thomas the Tank big boy undies! Now, if I could only get the dog to pee outside...
Wednesday -January 10th
We're home. Maddie finished this round of treatments last night. She had a sweet new roomate, Allie, who's from the Fall River area. Maddie was able to finish a little earlier because they can't give her one of the chemos when she is on radiation. Despite being shorter, it was a very hard round for Maddie. She was extremely nauseaus and she still had to do her radiation treatments. On top of that her port stopped working and they had to switch it out 3 different times before they could get it going. This round of treatment marks the halfway point for Maddie. She has a total of 14 big treatments and this one was number 7. We are also half way done with the radiation. Only another 5 weeks to go. We can actually start counting down now. It's a nice feeling!
Sunday -January 7th
We are very lucky and had a wonderful weekend. Saturday night Maddie had a girls night out and sleepover with Molly and Lindsey. The boys got to hang out at home and watch the playoffs with Dad. On Sunday Sarah Singer stopped by and she and Maddie had lots of fun walking Hope around the neighborhood. Michael hung out with Sam and William had his girlfriend Meghan over. Everyone had something to do and Dad was able to get control of the tv long enough to watch the Patriots beat the Jets. After that we went to family swim at Boston Sports Club. It was truly special to have an extra weekend at home with Maddie feeling good. Tomorrow we're off to Dana Farber for a 2-day chemo round. If all goes well we should be home by Wednesday. Please keep Maddie's friends Meghan, Hannah and Mary in your prayers. They have all had tough weekends and need our prayers and support.
Thursday -January 4th
We went to Dana Farber today to start our next round of chemo. Unfortunately Maddie's counts were too low and we have to put it off until Monday. Between the radiation and the anibiotics Maddie is taking her counts aren't coming back quite as fast as they used to. On the plus side that gives her another day at school and another weekend at home where she is feeling good and can have fun with her friends and do what she does best...just be a kid. While at Dana Farber she saw Caroline and Chelsie, then had a piano lesson with Lorie. Lorie is teaching Maddie to read music. Late in the afternoon Uncle Paul, who flew in from Chicago, stopped by the clinic and took her and Dad out for a nice lobster dinner. All-in-all a pretty great day!
Maddie successfully completed her first radiation treatment on her skull this morning. We are so proud of her. She worried endlessly about it this weekend and late into the night. We thought perhaps she might have to be put out for them the entire 6 weeks. She was able to to do it, though, and once she started she insisted on getting through all of the x-rays and the radiation treatment in one shot. Even the technicians were proud of her. Julie, one of the child counselors came in extra early in case Maddie needed more encouragement. She didn't though and I could hear Maddie through the intercom as she kept saying "I can do anything" over and over to herself the entire time. On the way home we saw a tripple rainbow. First one appeared, then another and finally another. What a great way to start the new year!
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