Friday -- August 31st
Took Maddie in for her 1st radiation treatment last night. Maddie brought her friend, Molly, which was a good distraction for her...and me.
The two of them got dressed up in Maddie's room before we left, in identical outfits, hats, and shoes. ALL pink. They looked like identical twins.
The two girls giggled like crazy the whole ride there, giving peace signs out the windows to passing cars, and actually had conversations with people at stop lights. They made people smile and laugh. They remind me of when I was a kid, being goofy with my best friend...
When we got to the hospital, they insisited on me pushing them in a wheel chair. So, I grabbed a wheelchair. The girls were cramped in the one I had, so, I stopped a man in the hallway, pushing an empty, extra wide chair, and traded off my small wheelchair. It was a definite upgrade.
We arrived at radiation, after turning several heads on the walk over. The two girls were just such a funny sight. I announced that we had arrived for our conjoined twin separation surgery. Well, with that, they stood up in unison and walked to the room as if they were one. Too funny...
The treatment was about 15 minutes and then we left. Not before we had to hit McDonald's, of course.
Today's appt. is at 4:45. So, I've gotta get the day going now and find a sitter...
Thursday -- August 30th
Had such a great night Tuesday night. When it got dark , we roasted marshmallows in our back yard with our neighbors. All of the kids loved it. Then we went for a night swim next door. What a great end of the summer memory.
I took all of the kids to Maddie's 1st radiation appt. Wed. morning. Had to wake them all up. Why is it that they NEVER sleep in, except on the mornings that you need them to get UP!
So, I threw them all in the car, hungry, groggy, whining, having to "pee," you know how it goes...
We somehow managed to get to the hospital with 15 minutes to spare, just enough time to cram bagels down everyone's throats and run to our appt.
Turns out Maddie was just having more pictures done, no radiation. We were there for a good 2 hours or so. Of course, we stopped at Friendly's on the ride home!
Got our schedule for the next 5 weeks. I have to have her there tonight for 6:45, for her first treatment, 4:45 tomorrow night. Then 7:15 am for the next 2 weeks, and then 6:45am for the duration. If she feels ok after treatments, she will be able to go to school.
Lots of errands to do today. Enjoy the day!
Monday -- August 27th
It was a nice weekend. So hot and humid, but nice. Went swimming in our neighbors, Stephanie and Brian's pool to keep cool. Thanks guys!
Saturday night was Molly's birthday party sleep over. Maddie had a great time.
Sunday was a lot of fun. We had several friends over for a casual get together. We were so glad Carol and Michael could come with Johanna. Carol's sister, Kathy, her husband Andre, and their daughter, Caitlyn, came too, along with the Altmeyer's. Later in the night, the Palmer's stopped in.
We had a great time, despite the fact that I didn't make enough asparagus! : )
Michael went to Drew's birthday party sleep over, so he wasn't here for the get together, but he had a great time pulling an all nighter with his buddies!
Today is BEAUTIFUL! Hope to get the kids out to a park or something. Hope you all enjoy the day!
Friday -- August 24th
It was exactly one year ago today that Maddie was diagnosed. Wow, what a crazy thing. Like a birthday or holiday, always and forever etched into your brain, on the calendar, this day will always be, whether we like it or not.
I poured myself a cup of coffee and sat at my computer this morning, scrolling down through all of the pictures from this past year. In so many ways I can't believe all that has happened in just one year, and in other ways, it feels like this has all been going on forever.
It will be "interesting" to see what happens over the next year, what photos and stories we'll be sharing...
It was funny, I said, "Maddie do you know what today is?" She said "No, what?" I said, "It's the 24th..." Michael gasped and said, "Wow, Maddie, it's one year from when you were diagnosed." She said, "Yeh, so...wait a minute...it's the 24th? That means tomorrow's Molly's birthday party!! Yeah!"
ALWAYS find the positive surrounding the negative. Find the good around the bad!
I took Maddie to see her friend, Meghan Duffy, last night. We met Caroline and her Mom, Kelly, there. It was SO great to see the three girls all together again, sitting closely on the couch. They chatted about Webkinz, movies, girly stuff. Light hearted, giggling, fun, as it should be. They played with Abby, Meghan's dog, and ate pizza together. It was great! Thanks Colleen, Frank, and Meghan, for having us over. We will see you soon!
Wednesday -- August 22nd
I know I have talked about our new friend, Nancy Serafini, in past entries, but now I want to tell you about her son, John.
Nancy had told me that John has started a foundation that will climb mountains to raise money for cancer research. His group is called Mountains for Miracles. What a perfect name! What a wonderful idea! You can learn more about it at: www.mountainsformiracles.net.
This past year was the first time his group set their goal, to climb to the top of Mt.Kilimanjaro! They completed their goal. They raised a lot of money for cancer research - a ton of money - $50,000! It was so successful, and they are looking forward to doing it every year!
Two weeks ago, on Thursday, before we met with Maddie's team, John came into the clinic to meet Maddie. This was the day that he would be photographed presenting his gift, and he had asked if Maddie could be in the photo with him. Can you believe it?! What an honor!
Unfortunately, Maddie was in the back room, seeing her doctors, getting her vitals done, and was very anxious about the meeting we were going to have with her team, to discuss her plan for radiation and whatever else.
She had been asked not to be present during the meeting, something she had never been asked before, and she wasn't happy about that. Maddie wants to hear and know EVERYTHING! She wasn't feeling great and never made it out front to meet John. We were an hour late for our appt. and the team was anxious to get started.
I was so sorry the two didn't get a chance to meet and that Maddie could not be a part of such an amazing event. I am just happy that I was able to go out front for a few minutes, while Ernie stayed with Maddie, and meet him.
In just those few short minutes, there was no question what a warm, genuine, caring, compassionate man John is. It was a pleasure to meet him and the cool thing is, he promised to wear a Maddie bracelet on his next climb up the mountain!
Thank you John for all you've done and will continue to do! Your contributions will save lives. What an amazing gift...
It was an honor to meet you.
Monday -- August 20th
I know I am so far behind on this entry. Sorry about that. I don't know where to begin, as so much has been going on...
Yes, the PMC was the most amazing, moving experience. I am so glad we were able to be there for the kick off in Sturbridge, and that we were able to support the riders the next day at the watering stop in Wrentham, before heading down to CT. for my family reunion. Thank you, MFS, for making Maddie your Pedal Partner. It was an honor.
There were thousands of riders, all supporting loved ones and strangers. Names on people's shirts, pictures, baby booties on helmets. Truly inspiring and touching to say the least. All fighting for a cure. It was so inspiring and I got the urge to participate next year. I'm planning on getting a group together and doing the shorter ride, of course!
It was neat doing the t.v. interview for NECN, but I, of course, opted to stay off camera, holding on for dear life to William and Thomas, because they wouldn't stand still. In fact, at one point I was pretty much on all fours and feared that would be the moment that they'd pan over to me! Hi, how ya doin?
As soon as the cameras stopped rolling, William and Thomas were climbing the tent poles like monkeys!
Anyway, a HUGE thank you again to everyone and we'll see you next year!
Tha family reunion in CT. was great. It was so nice to see all the cousins. The kids all had a great time. We'll add the pics to the website.
On Monday, Maddie and I went for our radiation tattoos. It was funny - the tech couldn't believe I wanted the tattoo near my chest. As if it would ruin my stripping career! She suggested I just put it on my hand. I couldn't - I told her Maddie and I had a deal. So, we both got a tattoo right at the tip of our rib cage and on the center of our sternum. I was hoping to get the Cindy Crawford mole... They're really just tiny little black dots, barely noticable.
It was a tough day that day for Maddie. Everyone in the dept. was SO happy to see her and she was covered in hugs and kisses, but she was very nervous and hates getting the tattoos. She was glad when the day was over.
Ernie and I took the kids for a much needed vacation last week. Our friends, Michael and Carol (Johanna's parents), offered their summer home in New Hampshire, for us to use. It was the most generous, thoughtful gift they could have given us. Their home is absolutely gorgeous, with the most breath-taking mountain views all around. It was just what we all needed, to get away from everything.
While we were there, we took the kids to StoryLand, and Whale's Tales. One day, Ernie and Michael went on a train ride through the mountains, while I took the three other kids to Santa's Village. It was so good to see them all laugh and smile. I just took it all in. At one point, I overheard the kids talking about this trip being their best vacation and how glad they were to be away.
What a small world - while at Whale's Tales, I was sitting on a lawn chair and two women sat down right next to me. They were two good friends from high school, Laura and Pam! We played volleyball and softball together and it was so fun to share a few good laughs about the old times and meet each others families! It was so good to see them.
We can't thank Michael and Carol enough for their generosity and it was also great meeting their good friends, Bruce and Jody, up there. What another sweet, wonderful couple. Thank you all so very much!
OK, want to hear the the real highlight of my week? On the second to last day of our get away, I got a voice mail letting me know that our beloved dog, Hope, ATE my brand new rug!!! Yep, ate it! I had it for one flippin' week and she ATE it! She was crated and taken care of by two friends while we were gone, so why she had to stick it to me is beyond me!
We came home to what looked like a two foot high mound of chewed spaghetti in the front of the rug. Yep, you know, the worst spot it could be. The spot that you can't hide, no matter how hard you try... Yeh, it's worthless now.
Have I ever mentioned how much I love having a dog?
We came home late Sat. and on Sunday I took Maddie, William, and Thomas, to a cook out at our friend's, the Lane's. Caroline Lane is Maddie's friend from the hospital. We've written about her several times. We had a really nice time. It was good to see several of the families from the hospital and re-connect again.
We go next Wed., the 29th, for Maddie's first radiation treatment and then we'll start our 5 day a week schedule.
OK, I think I've pretty much caught up. I promise to get some new pics on the site either tonight or tomorrow. Hope everyone is doing well and still enjoying the summer. Can't believe school will be starting up soon.
Thursday -- August 8th
The PMC is such an incredible event. You can't but help feel inspired and motivated, even as a spectator. If you didn't attend, you should check out the video clips at www.boston.com/NECN. You'll get a great flavor for it, but being there in person is even more amazing. Kristen has already told me she is going to ride in it next year.
Earlier this year I was contacted by Don Etkin. Don has been riding in the PMC for 7 years. Don is a Ewing Sarcoma survivor and like so many other people, reached out to support us even though we had never previously known one another. Each year after the PMC Don sends out his "Observations" to his supporters. They are fascinating to read and I've included the previous six years "Observations" under the link PMC to the left. This is his write-up from this year's ride:
PMC Observations 2007
April. If you are a parent, this is an event that you never want to attend, and yet, everyone is smiling. This is the Pedal Partners Party in the State Street Pavilion at Fenway Park. Pedal Partners is a program of the Pan Mass Challenge to pair patients from the Jimmy Fund Clinic with teams of riders who share the experience with the kids and their families. I am here because back in October a friend put me in touch with the Savoie family of Norfolk. Nine year old Maddie was diagnosed with Ewing's Sarcoma last August, and my friend Katie knew that I had been treated for Ewing's when I was 13, so she thought the Savoie's might like to hear from me. We developed a correspondence through the fall and winter. We talked about Pedal Partners, and I contacted the program, but they already had a team set up for Maddie, and instead matched me with 14 year old Valerie of Winchester. I have talked with Valerie's mom, Liz. It turns out that Maddie and Valerie are great friends. I'm going to meet both of them today.
I have brought some presents. Valerie has recently finished treatment, and I have been told that her most recent scans are clear! I made her a custom version of the Living Proof t-shirts that the PMC gives to volunteers and riders who are survivors. I also have my PMC jersey from last year for Maddie's brother Michael, who has raised seven thousand dollars for his participation in a Kids PMC ride in Norfolk.
I meet Maddie, Michael and their dad first. There is an overused stereotype of the courageous little cancer patient, but it doesn't begin to do justice to Maddie. She is having a good day, and she would fill the room with her energy and her smile, except that she is by no means the only one! You cannot begin to understand the presence of these kids if you have never experienced it. Even the parents, who have seen so much, and carry so much inside, smile as they get a day that is just about the kids having fun.
I meet Valerie and her family. Valerie is nearly mobbed by the younger girls, who clearly adore her. She is treated like everyone's beloved older sister, and she responds with extraordinary grace.
Little girls are a mystery to me. I didn't understand them when I was a boy. I have raised 2 sons, but no daughters. I'm not going to speculate about the causes, but every time I watch them in groups I am struck by how different they are from boys. These girls, all with little or no hair, are a sea of pink and lavender and conversations about manicures and outfits, and they are laughing and joking. I leave the party thinking of a horribly outdated song, from the musical Gigi : "Thank Heaven For Little Girls."
I'm in Norfolk to watch the local Kids PMC ride because I thought it would be fun, for a change, to stand on the side of the road cheering while someone else rides by. Maddie is the official starter for the event, and she is running (running!) all over the place saying hi to friends.
This is one of the funniest things I have ever seen. You would have an easier time herding cats than controlling this swarm of kids on bikes coming down the street. They range from 4 year olds with training wheels to 12 year olds on mountain bikes, and they all seem oblivious to one another. And yet, not one crash, not one fall. The only casualty I saw was a little boy who was very upset that one of his sandal straps broke.
I arrive in Sturbridge to the usual controlled chaos of registration and renewed acquaintences. I find my weekend roommates Mark, Paul and Dave (the rookie). My original PMC mentor, Paul Alegria has returned from injury as a 1 day rider this year, bringing in yet another rookie, Perry. My friend Linda finds me. She is a second year rider that I met during training rides this year with the Charles River Wheelmen club. Valerie's mom, Liz, is here. Valerie's dad, Larry, is stuck at work, but he will be riding from the Wellesley start in the morning. Liz and Larry are first time riders.
The Savoie's are here! They have come to be interviewed on NECN. Maddie recognizes me, and I proudly point out that while many riders are wearing the yellow Lance Armstrong LiveStrong wristband, I am proudly sporting the pink and yellow Maddie wristband I was given a few months back. Michael is wearing the jersey I gave him! I'm more than a little pleased by this.
After dinner there is the usual opening ceremony, a combination of videos, speeches, and musical performances. Some of it is very sad, some is hopeful and inspiring. It happens that this year there are two references to Ewing's Sarcoma, one in a piece about a young boy who died, and another in a speech by Dr George Demetri, one of the leading researchers at Dana Farber. Dr Demetri is exactly the kind of person you want doing this kind of work.
Back at the hotel. I'll sleep, or not. The alarm will go off at 4am. I will get up, get ready and ride.
Starting line 5:55am. Let's go, let's go, let's go.
3000 bicycles heading up route 20. With the exception of a few miscreants who insist on wearing team jerseys, we are all wearing the event jersey. It's not very easy spot any one person you might be looking for. I wonder what this looks like from the air.
First rest stop. 22 miles, averaging 17.6 miles per hour. Let me give you some perspective. If I go out for a 40 mile ride on my own, I'm pretty pleased if I break 15.0 for the first 20 miles. There is something about this event, these bikes, the people on the side of the road. I'm gonna pay for this later.
At rest stop 2, Linda finds me. She always makes me ride better. She takes her training very seriously, and her riding is very consistent, very good for me. She's too humble to admit it, but over the past couple of months, she has become stronger than me. I draft off her far more than she drafts off me.
When you start feeling the heat at 9AM, it's not good.
I'm getting cramps in both legs at 65 miles. This is scary. I don't get cramps. I've got a long way to go.
Rest stop 3 (the lunch stop) at 70 miles. Average speed has dropped to 16.9. As I stop the bike and swing my right leg back over the saddle to dismount, I get a massive spasm encompassing my entire upper leg. Owwwww!
Okay, it's easing off a little now.
This is where they have the Pedal Partners tent. Valerie is not here. She is away at summer camp ("Normal kid summer camp," her mom tells me, beaming). Maddie is not here either because they have a big family reunion to attend today (nice to have them doing something normal, too!). I visit the tent anyway. I spot Maddie's friend Meghan and her mom and they recognize me from the other events. Meghan is holding a large watergun. I ask her if it's loaded, then turn my back. She grins, getting my hint. She soaks my jersey, which feels good. Thank heaven for little girls.
There are 2500 volunteers working this event over the course of the weekend. They perform every job, big and small, while constantly thanking us for riding. Riders return to this event year after year largely because these people make it all run so smoothly. It's beastly hot in a crowded tent and these people are making sandwiches, hauling water, clearing tables and doing countless other tasks to make our day easier.
I can't hold my sandwich with my left hand because it cramps every time I try to grip anything.
I'm encouraged that my leg doesn't spasm again when I swing it back over the bike. Linda and I head out. I notice that the name tag on her saddle bag is askew, and I reflexively reach back to check mine. My Living Proof button is missing. I put that button there during my first ride! It has been the impetus for a lot of amazing conversations over my first six rides. I am really upset! I'm a little embarassed to catch myself thinking, "I'm just another rider now." Well there's nothing to be done about it and there's still 35 miles to go, with cramping legs, so just keep riding.
84 mile rest stop. Speed is down to 16.2. Keep riding.
96 miles, heading up a hill, dropping back from Linda, I feel a wobble in the rear wheel that can only mean one thing. My first flat tire in 7 years of this event. I pull off into a driveway where there are some chairs set up -- the family must have been watching riders earlier. Two small children come running up asking me all about my bike and the ride and why did I stop. Their dad comes out and offers assistance. I don't relish the thought of changing the tube and pumping it with my cramping hand, but a support van spots me within 2 minutes, and a mechanic quickly gets a new tube in place.
Back on the road. 98 miles. Ouch! Ouch! Ouch! That's not a cramp, that's a bee sting! Just below the edge of the shorts. There's no point in stopping. It's going to hurt the same pedalling or sitting on the side of the road. Three miles to the last rest stop. 12 miles from the finish.
101 mile rest stop. Ice is nice. Linda has been calling my cell, wondering what happened to me.
3:23pm Bourne again. 110 miles. 15.9 miles per hour on the bike for the day. Latest arrival ever, slowest average speed ever. The worst part is that I am too late to get a reserved time for a desparately needed massage, and will have to wait on the standby line. Shower, and rush to the standby line.
I explain to my volunteer massage therapist, Sarah, about my leg cramps. The second she touches my quad, it spasms. "We better stretch those first". I roll over, and as soon as she starts to bend my leg, the hamstring spasms. Same thing on the other leg. She works ever so gingerly for my 15 minutes, telling me that I should take 4 ibuprofen and do as much stretching as I can tolerate until I go to sleep. Hydrate, hydrate, hydrate. This is pretty scary. If this does not improve quickly, it's going to be a very long night and a very long 77 miles in the morning.
Business to take care of: Buy a Kids PMC shirt. Eat: Pizza. Chowder. Chili. Pizza. Baked Potato. Salad. Potato Salad. Sherbet. Burger. Pizza. Drink: Juice. Juice. Water. Water. Juice. Water. No beer.
Sitting by the canal (stretching!), waiting for the Living Proof group photo at 6:15. Dr Demetri is being interviewed by a camera crew. I really wanted to talk to him on Friday night after his speech at the opening ceremony, now's my chance. When he's done, I approach and introduce myself, and explain my interest in his remarks about Ewing's. I've seen this look of shock before. He knows what the survival rate was in 1968. I am struck by his passion as he discusses his work and his belief in the progress to come -- he is very excited about a new drug they will begin testing soon. It is good to know that the money we raise is going to support people like him.
Still sitting by the canal, stretching, I get into a conversation with man named Bill. I'm puzzling about my cramps, because I did my usual 1200+ miles of training. He mentions that he is a first time rider, and that it had been many years since he had ridden before he began training April 1, but he rode 2500 miles in the past 4 months to get ready. He is 72 years old. I am humbled. I ask him why he chose this year to undertake this, and he explained that last fall he attended a high school reunion, and he estimated he heard that a quarter of his graduating class had died of cancer, survived it,. or was currently in treatment. He figured it was time to do something about it, while he still could. He's moving a lot better than I am this evening. He's my hero.
Still waiting, still stretching. There is a guy sitting nearby with a team shirt that I first saw 2 years ago. It says "Pain is Temporary, Pride is Forever". I understand what they are trying to say, but I still don't like it. There is pain that can strip you of your pride, pain that isn't temporary. Cancer can cause that kind of pain. That's why we ride.
August 2007 Part2
Click to view posts from previous months: