Friday, December 12. 2008Johanna's Radio Interview
Johanna was on the radio today! As luck would have it I was able to record it.
Johanna_on_Radio_103_3.avi - Since its 105MB you might want to download (right click on link, save as) and listen from your pc. Johanna, you were amazing! Absolutely amazing. Sunday, October 26. 2008Shaw Wedding PhotosThursday, September 18. 2008Fall update
School is well underway. The morning air is extremely crisp. Summer fun is a memory now.
We’ll start with Ethan’s clinic visit on August 27. This visit comes one year and one week after Ethan’s transplant. This is a milestone in the bone marrow transplant world. Ethan checks out to be a healthy guy. HALLELUJAH! He’s taken off one of his remaining medications; he’s only taking aspirin now. After another echocardiogram in October, he’ll probably be taken off the aspirin. He begins his first round of immunizations, receiving 5 different shots simultaneously from 5 different nurses in both legs and both arms. His other annual post transplant check-ups go well, showing full functioning organs (heart, lungs, kidneys, etc). These organs can often be compromised from the toxicity of the chemo and radiation. We will continue to monitor them annually. Ethan has made it one year post transplant. We know Ethan has beaten the odds originally given to him, and hope and pray he’ll continue to do so. Unfortunately, we learn that Tim, a boy hospitalized with Ethan did not beat the odds. Tim died two days after his tenth birthday. He has been at home with his parents and three brothers for many months now, living life as a complete family to the fullest extent. Tim wanted to turn 10 so much, his parents say that’s what gave him the will to keep going. They’re an amazing family, full of strength, love and caring. There’s a nice article on Tim in Monday’s Boston Globe. Our thoughts and prayers go out to Tim’s family continuously, hoping for as much strength as possible to keep them going through this time. Yancy and I take this especially hard. Not that it’s ever easy to hear or know of these children’s’ stories. Tim was diagnosed only 5 days after Ethan, with AML, just like Ethan; he received a bone marrow transplant 10 days after Ethan. We were on 6 North with Tim’s family for the same amount of time, 6 West for the same amount of time. We all did the same stuff…we all paid our dues…yet it came out different in the end. The gratefulness for having Ethan now is overpowering, while the fairness of this all is questioned. Yes, doctors will give a completely different explanation, down to the cytogenetics of the leukemia cells, and the way the leukemia presented itself in the beginning; so many different prognostic factors. But in the end, it’s just not fair………. So, we focus on Ethan, and Emma, and Eliot. I focus on their adjustment to the new school year, to our new schedule. We celebrate the first day of school with a visit from Grandma Mary and Papa Hank, and a Thanksgiving meal. We have so much to be thankful for… Ethan has made a seamless transition to 1st grade. He enjoys the day from the moment he gets on the bus. He’s making new friends and doing very well in a classroom setting. Emma too loves being back at school in the 4th grade. Eliot is feeling very grown-up, now that he is four and going to pre-school two afternoons a week. Eliot and I enjoy each other’s company throughout the day, enjoying this one on one time we’ve never had. He started gymnastics and LOVES it. We visit farms, libraries, and play ball. I try to get a handle on the house, organizing, de-cluttering, trying to live more simply…easier said than done…but it keeps me busy in my “spare time”. I focus on balance for the kids…trying to create a nice balance of school, friends, activities, quality time at home, and rest…again, easier said than done. For those of you who still fit in platelet donations into your busy schedules, thank you, thank you. You’re making a difference…you’re helping so many children. Thank you for keeping Ethan in your thoughts and prayers, thank you… Tuesday, August 12. 2008Ethanism
Eliot was playing with Ethan's prized medal he received from playing baseball this Spring. Ethan took it away and stated with some authority "...that's real solid metal".
Adventures and Wishes
Fortunate…Blessed…Lucky…That’s how I’m feeling. To spend the summer with all three of my children, to have so many fun adventures, to be preparing for a very appreciated year of school, to have my son’s wish being granted…this list goes on.
The summer has consisted of a few days of home in between our road trips and vacations to see family and friends. No matter where we’ve been, when we get home, home looks so good! The events we’ve traveled for have been very meaningful…The Jimmy Fund Clinic Summer Festival, the Pan Mass Challenge, the 2nd Annual Ethan Lent Golf Tournament. The festival was just that...something that Dana Farber does for all the kids and their families that are patients of the Jimmy Fund Clinic. Ethan and the kids enjoyed rides, games, food, prizes, etc. A very fun day, rewarding all these brave warriors for all the pokes, prodding, needles, tests and toxicity they have endured throughout months or years. The weekend of the PMC was incredible. The kids and I made it our goal to see Daddy on his 1st day of riding, and be at the finish in Provincetown on the 2nd day. We managed that and threw in some fun along the way. It’s such an inspirational and touching event. And for me, standing next to Ethan as he shouted “THANK YOU” to each rider that went by, very emotional. Yancy did an amazing job. We are so proud of him for accomplishing what he did. And “THANK YOU”, for your generous donations. We hope and pray that the researchers and doctors continue to find new medicines, new treatments, CURES! Yancy and I ponder who will ride it next year. After I expressed a bit of interest in it, Yancy is all for my taking a turn to ride in it. I don’t know if I’m ready to devote that much time away from the kids for training. All in all, it’s not that much, less than 10 hours a week in the spring and summer. I would probably become a better person, a better mother. We’ll see…still more pondering. Then there’s the thought of forming a “team”…Team Superhero? Sharing this experience with family and friends, raising even more money to find a CURE. Any takers out there…? “Aunt Katie” and “Uncle Nick” host the golf tournament in honor of Ethan for the 2nd time. This year, we were there! Ethan played 18 holes of golf! It was a very memorable day, and an event that was so well planned and filled with love. All of the proceeds will benefit the families and children of the oncology and transplant floor at Children’s Hospital. We’re so thankful, Kate and Nick, for your continued thoughtfulness and generosity. Thank you… Right now, I listen to the table saw outside, cutting repeatedly. They’re making Ethan’s wish come true, outside in the rain. After a couple of attempts to secure a builder, the Make A Wish Foundation found a very willing construction company, based in Quincy, MA, J. Calnan and Associates, to build Ethan’s pirate ship treehouse. A member of their management team designed the structure, and they began construction yesterday. Day 1 pictures are posted, and we’ll post Day 2 pictures later today. Thank you to Make a Wish, and J. Calnan and Associates...Ethan will enjoy this treehouse for years and years to come. Two and half more weeks of summer…YIKES! I’m not sure if I’m ready for it to end. I know that the kids are very excited to start school though. We’ll look forward to more summer adventures though, packing them in until the very end! Friday, August 8. 2008Pan Mass. Challenge 2008 Official Finisher
It was everything and more then I ever thought it would be. Here are my thoughts and reflections on this amazing event.
Friday Evening I arrived at the Sturbridge Guest Hotel at around 5 and was quickly overwhelmed. There were people and bikes everywhere. I made my way to the registration area after getting a lay of the land. I turned into the large registration room and quickly did a u-turn. The one thing I was worried about, the one thing I couldn’t train away was happening 10 minutes into my journey. I wasn’t quite ready to hear the cow bell ring, indicating that I was a first year rider. I took a couple deep breaths as I stood there acting busy on my cell phone and turned around and waked to my assigned letter. The bell went off, smiles were had and surprisingly kept my composure. Bell was going off a lot and I was elated. I got my stuff and made it out of the room with dry eyes. Next was dinner and the all important carbo loading. I got the basics, pasta and steamed carrots. As a mental note, I will never do this again. It had to be my 4th pasta meal in the past 3 days and the night before is just too close to the effort. Next time around in the days leading up, pasta yes, but a hearty meal the night before. The eve of my PR marathon I had a huge steak with nothing on it. I made my way to a table and quickly made some friends. I ended up following them after dinner to the opening session. They were all on a team and many worked in the IT department at State Street bank so we had a lot to talk about. The opening session was very nice. It was set to a live airing on New England Cable News so there was down time between commercials just like you see in a sporting event. For those reading from Planet Lotus this session was like a mini Lotusphere. When the live broadcast would break to prepared segments they projected them up on the big screen. Some of the extended interviews, really, really hit home bringing back some vivid memories of May 7th, 2007. One of those interviewed mentioned when he got ‘almost’ the worst news a parent could get or when they explained their reaction to the news. All of the stories made me melt. The session ended at exactly 9 and I was picked up minutes later by my friend Mike. He lived just a mile down from the hotel/starting line so it was perfect. I told him in advance I was going right to bed but you know how that is. We had to print out a sign for my back that Johanna made up, get the tape, take a shower, prep all my stuff, decide what I was taking on my bike and what I would pack, the important little things that in now way do you stress over for the next three hours as you try to go to bed.. ok maybe 3.5 hours. Saturday I woke up at about 4:40 and would guess I got about 3 hours of total sleep. It was part stress part kid the night before Christmas excitement. We got to the starting area a little after 5 and it was an organized mad house. I spent the last of my nervous energy taking pictures, getting water and organizing things in my jersey pockets. I then started playing phone tag with Chandler. He was a fellow team member that I had to sync up with to get the team tattoos and paper cranes for my bike. I didn’t put much thought into where he told me to meet him. The huge wide open parking lot was divided into three wide lanes depending on your speed. He had had me meet him ‘near the NECN news truck’. This happened to be in the middle of the middle lane and just a couple feet from where MA. Senator John Kerry was being interviewed. As we exchanged the items I couldn’t help but notice a fast moving rider that rode just behind Chandler which instinctively caused me to quietly start punching Chandler in the arm, pointing in his general direction. It was Frankie Andreu, all alone waiting in the wings as they Star Spangle Banner was being introduced starting. Chandler and I went over and shook his hand. As I continued to put away the stuff I was given. Chandler took off and followed Frankie to the start of the fast rider lane, the moment I realized the Star Spangled Banner was starting. I was standing there with my helmet in my hands unable to follow him. There were thousands of rider behind me and I was right under the flag, no one was moving and I couldn’t bring myself to be that guy. The second the song started volunteers blocked anyone from jumping into the front of the fast lane and I was stuck. The gun went off and I had to stand there and watch as the entire fast lane headed out. ![]() I would later learn that Chandler lined up right next to and befriended Frankie and Senator Kerry. They were part of a group of 5 that did the entire ride together. I have only a high level of what was talked about but Frankie as I’m sure anyone that’s heard him speak on TV is just as cool in person and can still hammer on the bike. Senator Kerry, WTF! They finished at 11:30 am. He is 64! Yes, he drafted Frankie almost the entire away but it still doesn’t diminish the amazing performance. Where does he get the time to train! It makes one wonder. The first 10 miles were slow going. There were so many people that I didn’t feel all that comfortable darting up the left hand side. After about 10 miles of passing hundreds of people the hills came alive. They weren’t all that bad for many reasons, good training, excitement, energy of those around, etc. The course was hilly but you have to expect that over a distance of 110 miles. At about the 15 mile point you could feel the pace of those around pick up, or I cough up to those going the pace I wanted… not sure which is correct. There weren’t that many pace lines forming but I did start following a guy that was going faster then the rest. I was staring to settle in when I heard a loud voice scream my name. I turned back to look through the crowd of people and it was Mrs. Donna. It hit me like a ton of bricks. It was one of those moments where it all came together. One of my Son’s most favorite people in the world was out there cheering everyone on. I lost it. It was the single best moment of the ride. I skipped the first rest stop at mile 24ish. I was able to sync up with a couple pace lines but either they were unorganized, I dropped them or they dropped me. What ever the case I was amazed for a ride this size how much time I spent riding with no one in front of me. I made my first stop at the 42 mile rest stop. I got a new water and sports drink and a cliff double espresso shot. I also switched over to my sunglasses which I never cleaned and had nothing to clean them with. O’well. The double espresso wasn’t a good idea, you should never try anything new on race day. I can’t describe what I didn’t like about it I just didn’t like it. At about the 60 mile mark as almost on que, my shoulders started to hurt. I tried to will my way through it but the pain moved up my neck and started hurting my jaw, it was pretty bad. I pulled over an downed some Advil which turns out to be a boat load cheaper then getting my bike professionally fit I was on pace to meet the family at the family lunch stop at 9:40. I actually arrived at 9:36 with a pace of 20.5 at the 69 mile mark. While riding in to the back of the school I called out “Han” to a woman… who wasn’t my wife. My sunglasses were that bad. ![]() I was so happy to see everyone. So happy. I gave myself 5 minutes to visit which turned into 16. I was back on my bike with somewhat cleaner sunglasses. The ‘lunch’ I consumed included ¾ of a large Dunkin Donuts coffee a piece of cantaloupe and a Stonyfield strawberry smoothie. This ride taught me how much you can eat when you ride. It is not running where the food, for lack of a better term sloshes around in your stomach. That would be my last official water stop. I only refilled one more time at stand in someone’s driveway. I was thrilled to know I only had 40 something miles to go. With the coffee, a little food I was good to go. As the miles increased so did the heat. My goal was in question. The math was even hard to do. At around the 90 mile mark I was in no mans land. Long stretches of road with no one in front or behind me 5,000 riders and not one in sight. I spent from mile 85 to about 100 both trying to figure out if id be able to finish before noon. It was a constant balancing of pushing myself and regulating my body temperature. Energy replacement was no simple task. It took over 15 minutes to eat my last Powerbar. I could only swallow small bits of the bar at any one time and was always on the verge of gagging. I have no clue why but this only happens at the 3 hour + mark. Cliff shots from here on out. As my odometer reached 100 I pulled over and took off the thick black socks they gave us at reg. Another amateur mistake, it actually made a difference and I felt a little cooler all be it mostly psychological. I was also a little pissed that I would never know my (actual) ride time and pace for 100. The reason had to do with the family rest stop. Half the time we were there we were walking. I never disengaged my odometer. I went from a listed 20.5 average to 19.7 over the course of that 16 minutes water stop. A reading of 1mph will kill your ride average It was clear from about the 95 mile mark, based on the fuzzy figures I had to go on that I wasn’t going to make it in before noon. I just keep plugging away and kept crunching the numbers. The last 15 miles was a hypersensitive effort to not overexert or overheat. The heat was getting to me. I do well in the heat but that is in relation to everyone else, when there is no one around its hard to gauge. ![]() I finished strong at 12:06 something. I had made sure to sync my watch to the atomic time days before. I was not disappointed. When I brought my bike into the bike rack area I was a little light headed. When I saw how few bikes were in (of 4,900+ on route) I was even more satisfied with my performance. I exited the bike racks and found the first piece of shade and laid down. I was only able to rest for a minute then another celebrity sighting, I got up to watch Uta Pippig walk by and sit down about 10 feet to my side. She is SO nice. After she was done with her phone call I asked someone sitting by to take our picture. Eat your heart out Dave ![]() From here I walked to get my stuff to take a shower. I ran into Chandler where he told me all about his amazing ride. He road with Frankie and Senator Kerry the whole way. I later learned that he also road with Greg Lemond for the first half but lost him somewhere along the way. I could not get enough details of the ride. I could have been in that group; I’ll let it go; one day. I when in to the caged area with all the bags only to find my bags weren’t there. Then I found out my bag was in my room after some looking. I made my way into the middle of the Mass Maritime Academy (MMA) and ran into Ken. We signed up for massages both at 2 and went off to our rooms to shower up. When I got to my room there was only one bag, in that was only my pillow. So check every other room that ends in 18, in bike shoes. They weren’t there so off to lost and found. They gave me a shower kit so all was good. On the way back to my room I found my bag, two rooms down; score. ![]() I entered my room and meet two of my three roommates. They were not the stereotypical feather weight cyclist so I mistakenly stereotyped them. We were talking about training and I had mentioned that my Wednesday ride, 3 days prior was 36 miles and the pack averaged 22.1 mph. You could hear crickets in the room, after a second or two of silence one of them said “that’s about what we averaged today.” They said they finished at 11:07 from Sturbridge. If they didn’t stop at all, they would have done 21.4 but they had to stop so they’re right on. They were hard core; which I define as anyone finishing faster them me After the shower I meet Ken on the lawn for beer, food, beer and music. We had one of these it’s a small world moments. He worked security for the RPI field house in Troy, NY during college where he was a student. At the time I was in HS or even JH (sorry Ken) I forget, attending my first Heavy Metal concert with friends. It was to see RATT; he was working that night. Too funny. The massage was well worth the wait. Everyone talks about the massage for good reason. Never in your life are you in so much need for one. Even a bad one would have been great. The set up is this. You sign up for a time, you get a slip with your time confirmed. Everyone with that time meets under a tent in the minutes before. They call everyone in to a big air conditioned room and ask that you quickly get a table. You lay down and all table has two masseuses. So the 15 minutes is really 30. They ring a bell a two minute bell at minute 13 and ring another one at the end. Where you have to quickly exit. This happens for 8 hours. The masseuses get 1/3 of their practicum work done towards their license one that one day. It’s a win win. Just like the free beer Harpoon gives out all day. We get free beer, and I in turn have a hard time buying or ordering anything other then Harpoon for some time to come. Let it also be know that Ravenswood Wine, Nantucket Nectar’s along with Snapple are also on this list. ![]() Then the rain came. At about 5 ish the rain can in sideways. The Nantucket Nectar’s 12/12 tent and one other flew into the air and crashed to the ground. Everyone moved into the big tent which was eventually evacuated, it was that bad. Ken and I when in and found a long hallway with a door at the end to hang out and watch the storm. There where three other people there. We had some great conversation with those people. For the first, actually only time I got to tell a stranger Ethan’s story in bits and pieces. It was healing. After this was more food and more drink then off to an early sleep; so I thought. When I got to bed it was hot as could be with no moving air. The roommate above me, the one I didn’t meet didn’t like the light or the sound from the hall so he closed the door. I got even hotter. For the first time ever I was sleeping with out a shirt on, to add to that sweet was dripping down my back. I got up to splash some water on my face but it didn’t do the trick. It took well over 2 hours of lying in my own pool of sweet to get to sleep. I went on to wake up 2 more times. I got scant sleep and finally got out of bed at 4:20ish. Sunday ![]() I got dressed, packed and brought my stuff down to the truck. I was elated to find many breakfast options including the sure fire winner bacon, egg and cheese on English muffin. I had one of those a smoothie and get this, a coffee. I was worried I’d regret it on the ride but it was the correct thing to do. Then, after 8 hours of hanging out with Ken on Saturday, a dinner at my hours on Thursday with his family I realized I didn’t have his number in my phone. The vague “I’ll see you at breakfast” was just that, vague. It took him emailing me his number. I meet him at the bikes and we waited for a bit for Team Bright Happy Power. By the time we left there were about as many bikes left as when I came in the day before. The ride started off very slow. I spent more time coasting then peddling. My legs and body was no different then any other ride I had done all year. I was amazed. The first test came about a mile in when we had to cross the Bourne bridge. This also turned out to be a cake walk and I believe the last time all day I used my small chain ring. After the bride we turned onto a path that followed along the water. The fog was heavy and it was magical. One of the guys on Bright Happy Power lead the pack to a consistent 20-21 mph pull for its entire length. I was in second position enjoying the sights. Not being a morning person it was pretty cool to see the morning fog, fishermen at work and people out walking their dog. Team Bright Happy Power broke up in the coming miles the varying speeds split everyone apart and I was fixed on staying with Ken. At the base of the first big hill was the last time we all road together. This was a good thing. I would have loved to ride with all of them but the talent levels seemed all over the place and keeping everyone together on a crowed ride just isn’t fun. There were a fair number of hills in the first 10 miles of the ride but they were so rolling that momentum from one lead to an easy effort up the next, or so I though. The rolling was nice but even if they didn’t the oxygen build up in the legs from the previous days effort made every hill easy, even with my 215 lbs. Ken and I joked that it had to be the massage and that the only difference between us and pro riders was that daily massage… and the 7 hours a day on the bike; might also help a little. In looking back, the beer, massage, previous days effort and the enormity of the event all lead to an amazing day 2. It was a lot of fun strolling along and taking everything in. There was one point where I couldn’t hold back. A pack of kitted out riders all from the same time when flying by, I joked with Ken that I was being sucked in where he responded, Go, I’ll see you at the next water stop. Off I went. We were averaging in the high 20’s in a long pace line. It was pretty hairy at times due to all the riders around going about 14ish mph slower. The narrow cape roads, the traffic all made it very edge of your seat. I was in heaven. There is few sporting highs like flying at top speed with a pack of riders. Primal is the only thing that comes to mind. I’ll guess we covered 8 miles in this pack up until the next water stop in Brewster. They were team ROAG out of Westford, MA (where I used to work). I overheard one of the guys at the back saying it was his 16th PMC. Good for him!. The Brewster water was organized chaos. It had a western theme and had everything you could ask for. Drinks, food, music… but no coffee. I got a couple laughs when I asked a volunteer. A rider next to me yelled yeah, and simulated guzzling down a hot cup of coffee then pouring it over his head. It had everyone around laughing. I had a ton to drink and a half a Peanut and Fluff. In the coming miles I would learn the difference between a long ride and a long run. A sandwich, for me is out of the question on a run, biking is totally different, if I were only to have put this together months ago. You live and learn. Brewster lead to Orleans, where my in laws have a house and where I have been at least once for the past 10 years. We spent time on the bike trail and went through a part of Orleans that I rarely go. From here it was road then back on the bike path. As part of my training I did a 76 mile ride which covered two laps of this trail so I know it well. We took it to the end in Wellfleet I believe where we went out to the ocean side. This was the exact path I went on with a guy I meet on my training ride. I couldn’t help but go fast up every hill. I had so much more speed and energy then that training ride. Due to the relaxed pace we had been on I had a lot of energy build up for the hills. I tried to go up each one as fast as I could, just trying to stir up a chase from others around me. One older guy actually yelled out “You sure love those hills”. My legs weren’t getting tired, id sprint up to the top then slow down to let Ken catch up. I began to start thinking about my goal for the weekend. I really put a lot of weight on this event in terms of using it go get out the daemons. Saturday’s effort didn’t really do it. I think it had to do with not digging two deep. I worked hard for that time but didn’t kill myself partly because I didn’t want to blowup, overheat or not have anything in the tank for day 2. In hinds site no matter what effort you put in on Saturday I feel you will always have more in the tank. So the hills we’re it for today. I was going to go deep on every hill, sprint up everyone until I couldn’t’ any more. I kept asking Ken where the big hill was, the one everyone talked about. I told him that I was going to attack it like a starved dog attacking a steak. I could feel my legs tiring but I still had a fight in them. As the big hill came into sight I sprinted by a group of people and didn’t stop for about .3 of a mile. I put everything I had into it, the effort was full of yelling, swearing and a few tears. When I got to the top and started slowing I looked at my speedometer, 23. Success. ![]() The ride into PTown was partly on a major road with fast moving traffic. I was waiting for Ken at one point when I saw a big sign that read, tell us why you are riding. I had to put in writing the one thing that I had been saying over and over again. This is very difficult part of the ride for me to express. I saw this ride as a journey to help me come to terms with all that has happened over the past year. When I found out on that journey is things changed. I believe I have come to terms with Ethan’s illness and have set my eyes on the now. We have all been blessed with Ethan health. This ride was all about Tim. Tim is one of the 3 boys on 6 North that had AML. In our time there I only know of Ethan, Tim and Charlie. Tim and his family arrived on 6 North just a week or so after Ethan. I remember when I first laid eyes on Kevin and Joanne in the resource room possibly hours after coming in; they were drained confused and in the exact same state we were in just days earlier. They were the new family but instantly there was a bond. Tim is still fighting Leukemia. I drew all my strength this past weekend from him by repeating the chant. Tim Will Win. I wrote this on that sign. You can faintly see it in the picture. What I said over and over in my mind became more pronounced as the efforts became more trying. I found it very therapeutic to vocalize it under my breath until that last hill where I was yelling it at the top of my lungs mixed with a few choice words that my kids aren’t allowed to say. I will continue to pray for Tim; if you’re still reading, please do the same. ![]() From the top of that last hill on it was smooth sailing. I got what I came for now it was time to see the family. Ken and I did the last few miles together. I got the best of both worlds, I got the competition of day 1 and the fun of day 2. Looking back I wouldn’t have done anything different and if I do it next year will do the same thing. I was great to share the day with Ken, it would have been a lonely ride without him. The finish was overwhelming. Running through the gauntlet, giving hi-fives to the kids then seeing my family and my mother was a perfect end to a perfect event. The return rate of riders for this event is amazing, something like 70%+, maybe even more. For the last couple days the thought of not doing it next year hasn’t crossed my mind until Johanna mentioned interest in doing it next year. I am asking anyone that is reading this that knows Johanna to please encourage her! ![]() This is one event everyone must try. I have run many a race, nothing is more rewarding then thousands of people along the route saying two words, thank you. When you actually stop and think why they’re thanking you... when they don’t have any hair and they’re thanking you, when they’re dancing with a grass skirt on next to a sign that reads I’m 8 because of you… that is why you must do this ride. ![]() As for next year, if I do ride again I have figured out the sign I will wear on my back; and I pray to god it will still hold true.
1980-2006 PMC RIDERS Please remember it is not too late to give! If you would like to help lick cancer click here.
Thursday, July 31. 2008He'll get there by Noon.
This weekend is the big ride and my mind is mush. The stress of getting everything right is both useful and useless. I know in the end everything will run smoothly but the stress in a way helps me to make sure I get to that end; that successful end.
I have such a draw to this event. Many are less then obvious. The biggest of the less then obvious reasons is the concept of the 'Pan Mass', literally translated a ride across the state. But as an endurance purest the fact that its not actually across the entire state bums me out. Maybe next year I’ll take a day off and do just that, start at the western end the day before and ride to Sturbridge. It’s fun to dream. So I’ll have to settle for 192 miles over two days… and there in lies the problem, notice the word ‘settle’. The 101 mile training ride that I did 3 weeks ago has me in a completely different mind set. In a way the first day of 111 miles is less of a challenge, so in that spirit I have made a new one. I came up with it in the latter ends of that long ride. It was based on something that has resonated ever since I heard it. Have you ever had those conversations where a pointless comment just sticks, and your mind revisits it over and over again? When I first meet Chris Doktor he made that very, very subtle comment. Chris is the Captain of the team I’m riding for/with this weekend. On a side note, it’s an honor to be on the team and I thank him more then he'll ever know for inviting me. He was giving me insight into the ride, the process, all the good info you get from someone that’s been there. We were talking about arrival times, start times and when you have to wake up. He then pointed down to our fellow teammate Chandler and said with wide eyes, 'He'll get to Bourne before Noon' or something to that effect. Just like dreams my mind is fuzzy of the exact wording but the message was succinct. Getting there by Noon is a pretty sweet accomplishment. That's 111 miles in less then 6 hours. I want to be that guy. I want that challenge. I what this to HURT. I have daemons to battle on Saturday and the more intense the fight the greater the gain. The book I read to prep for my first marathon 8 years ago stressed over and over again how you should never place a time goal for your first big race. I did, I failed and it was the best thing I could have done. The failure of breaking 4 hours (by 8 minutes) lead to more training, more effort and a 3:30:00 less then a year later (for the record I missed my goal for that race by 1 single second). The difference of that first marathon and this ride is making the goal public. I welcome the pressure. To all of you that have sponsored me, thank you. You have done a wonderful thing. To all of you that haven’t don’t be turned away by the large sum I’ve amassed. Every dollar counts, it’s not about my total, it’s about the possibility of your donation favorably impacting a life that has been turned upside down. It gives me great joy to know I’ve done something that could cause a positive chain of events, a cure, an extension of a study, the procurement of better equipment or the hiring of that favorite nurse that your son takes about all those months later. To Ethan, Jessie, Tim & Charlie, this weekend is for you! Donate to PMC Saturday, July 26. 2008Critical Need![]() The patients at Children's Hospital Boston are currently in critical need of platelet donations. If you can, please contact the Blood Donor Center to make an appointment as soon as possible. Call 617-355-6677. more information at: Donating Blood & Platelets I know many of our Platelet Heroes have been called recently. Thank you all for your continued support...for all the kids we know, and all the kids we don't know... Wednesday, July 16. 2008Time is flying!
The days are flying by, each filled with fun! Emma turned 9 TODAY! Happy birthday Emma! See how she has grown over the last 9 years...
![]() We'll backtrack to June 25...Ethan had another INCREDIBLE check-up @ the Jimmy Fund Clinic. He continues to amaze his docs. He also saw his neurologist who concluded he has no residual effects from his stroke. We have quite a line-up of appointments on Wednesday, August 27: lung function tests, echo cardiogram, clinic appointment for check-up, blood work and first round of his immunizations. Tack on dental and ophthalmologist that we'll see outside of the hospital, and that will conclude his one year post transplant follow-ups. An quick overview of July: ![]() celebrated Independence Day at the Cape ![]() sleepovers, friends, cousins ![]() Ethan got to see his 1st Red Sox game with a GRAND SLAM @ PMC Night @ Fenway ![]() I was teary throughout the game, so happy to be there, with Ethan next to us... and we spent a couple great days in NH with friends, today we celebrate Emma's 9th birthday...and there's still more fun to come! Yancy continues to train for the PMC, riding 102 miles last Sunday...his longest ride yet! Thank you for your generous donations...Yancy has exceeded his minimum fundraising level, actually doubled it! Much more PMC news to come as August 2 draws closer. Friday, June 27. 2008Kids say the darndest things...
A week or two ago Emma had two friends over for a sleep over. The subject of cracking knuckles came up between the girls. After a minute or so Ethan interrupted with this gem... "once I cracked my neck knuckle".
Priceless. Sunday, June 8. 2008Dreaming…
As I sit here and recount the days events, I wonder, “Am I dreaming?”
Ethan attended soccer for the first time last Sunday. Today he gets to go again…and he’s so looking forward to it. His goal last game made his week, and instilled a love for soccer from the get go. Today is supposed to be HOT…high 90’s. We know we’ll take it slow, keep hydrated, make the most of it. We head to soccer at 12:00pm. It’s hot, but Ethan’s ready. They practice for a half hour, and then play a game for a half hour. He’s SO into it. While it’s hard for him to hear on the field, he stays tuned in to where the ball is, where he should be, and what’s going on. He remembers the secret I told him from last week, “Ethan, the secret is that you can’t do anything in that clump of kids around the ball…but if you wait outside the clump of kids, the ball will come out, and then it’s all yours!” Ethan manages three goals in the game today. He’s not the fastest kid out there. Speed has never been his thing. But, at the age of 6, he already “gets” the game, and waits for his chance with the ball. So, there’s Ethan today, in the 95 degree heat, scoring goals on the field! GO ETHAN! ![]() ![]() more soccer photos @ www.lentfamily.org We then proceed on to the Pan Mass Challenge Kids bike ride at Bradley Palmer State Park in Ipswich. Emma, Ethan and Eliot registered to ride today, and raised money for The Jimmy Fund. It was a wonderful event, and the day was BEAUTIFUL. Yes, slightly warmer than ideal weather, but BEAUTIFUL. The beauty though was enhanced by the fact that Ethan was riding PMC Kids. We’ve HOPED and DREAMED we’d be here, together, riding…and our DREAM came true. The three hours are filled with fun…face painting, crafts, Ethan being photographed with the other five SURVIVORS…children…SUPERHEROES…all sporting pins that say “I’M LIVING PROOF”, and then Yancy and I ride with Em, Ethan and Eliot, as they head out the trail for the 3.2 mile ride. They all ride as if they have endless energy. And once again, Yancy and I feel as though we’re dreaming. The event is touching, to say the least. We hang out with another Rowley family, with three children. Their dad has rode the PMC for four years now and will ride again in August for his 5th time, and they have done PMC Kids many years now too. Yancy chats with him, getting some PMC tips…gearing up for the big ride in August. We head home…El’s sleeping by the time we pull in the driveway. Yancy heads out for a long 50 mile bike ride. El sleeps cozily in bed, at only 5:00 pm. Em watches a movie upstairs. Ethan watches a movie downstairs. And, as Mommy writes, she concludes she is dreaming, and wants the dream to be ever-lasting. Sunday, June 1. 2008Update, June 1
Beautiful days...the last couple weeks have been filled with beautiful days. We returned from Florida last Sunday, one week ago. While in the hospital Ethan often asked if we could go to Disney...he's never been, he wanted to go, so that's what we did. We had 6 fun-filled days at Disney parks, and Sea World. They all had a great time, and Ethan held up particularly well, going all day in the heat and sun. Parks, dinners, swimming...lots of fun! Ethan loved it, and of course is already asking when we can go back! Our family, friends, and community's support throughout last year made this trip possible. It wouldn't have been easy for us to do a trip like that without the support you gave us. Thank you, thank you...
![]() And this past week at home has been gorgeous weather. Yancy and I are still so very thankful to be at home right now. Given that we were in the hospital throughout this gorgeous time of year last year makes it extra special, and we're not taking it for granted. Ethan wakes early and plays all day. We keep busy at home and around town during the days, catching up with people we haven't seen in awhile, gardening, playing outside, etc. I would say that fatigue shows faster than usual for him, but he doesn't let it slow him down. He continues to keep up with the fast pace he sets, even if the grumps set in. In the next couple weeks, soccer and baseball conclude, Em has a dance and piano recital, they ride in the kids version of the Pan Mass Challenge. Lots to look forward to. We look forward to many sunny beach days ahead, quiet summer mornings, late summer nights, spending more time with friends and family. Ethan's due back at the Jimmy Fund Clinic on Wednesday, June 25. We continue to have such great hope, and cherish each day at home, together... Tuesday, May 13. 2008"thanks mom" marrow donor drive
Join the Donor Registry
Life. It's in you. You could be the one a patient needs. Join the marrow donor Registry for free online during their Thanks Mom campaign, May 5 to May 19, 2008. Thanks to generous partners and contributors, costs are covered until they reach their goal of adding 46,000 new donors to the Registry. Join online now. It’s easy and it's free for the first 10,000 people who join online.
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WAYS YOU CAN HELPINTRODUCTION TO THIS BLOG Dear Friends and Family DONATE PLATELETS AND BLOOD Children's Hospital Boston NATIONAL MARROW DONOR PROGRAM Join the Registry PAN MASS CHALLENGE (PMC) 2008
In HONOR of ETHAN VIDEO
August 2-3, 2008 Yancy's first PMC ride: 2 days on his bike, 192 miles in honor of his Superhero Raising at least $4000 for The Jimmy Fund Donate now NOTIFY LISTPLATELET HEROESThese platelet heroes donated platelets and/or blood at Children's Hospital Boston, or their local hospital, helping tons of little superheroes!
Ethan related News publicationsDaily News - Ice Cream Social
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Comments
Wed, 13.08.2008 00:50
Count us in for Team Superhero my sister! We wouldn't miss if for the world!
Tue, 12.08.2008 23:54
Keep me on the potential team superhero riders list, please. We're psyched Ethan is getti ng his tree house.
Tue, 12.08.2008 23:38
Lindsey was just asking me the other day if Ethan got his tr eehouse yet! We were so excit ed to see that they have [...]
Tue, 12.08.2008 19:46
I'm in for Team Superhero if J ohanna is!!
Sun, 10.08.2008 19:20
AWSOME!
Thu, 07.08.2008 00:21
Yancy!... Congrats on the ride ..l am still waiting for a pos t on it!!! Cant wait to see yo u guys in AV!!
Fri, 01.08.2008 14:14
If anyone can achieve their dr eams or their goals it would b e you, my son. You were bless ed with very positive de [...]
Thu, 17.07.2008 19:23
Great to see you guys at the S ox game! It's almost PMC weeke nd!!!
Thu, 05.06.2008 15:09
hi-I hear you!! Every night w hen I crawl into my own bed I thank God that I am not on tha t pull out couch and I s [...]
Sat, 24.05.2008 00:48
What a beautiful site. Papa H ank has been my coworker for s everal years now. I hope Disn ey was everything you co [...]
Thu, 08.05.2008 18:52
I have never met a child or a family more deserving of a wee kend away in CT and a trip to Disney World!! I bet Mi [...]
Thu, 08.05.2008 14:26
HIP HIP HOORAY for superheroes . How touching it was to read what you wrote. I couldnt be h appier for you ALL. Will [...]
Mon, 28.04.2008 15:48
We are elated to read this fab ulous news! I think every time I here nada, zip, zilch, I wi ll always think of Ethan [...]
Mon, 14.04.2008 20:05
Hi Lent Family! We were wonde ring if Ethan was going to mak e a wish. What an amazing tre ehouse from such a wonde [...]
Tue, 01.04.2008 00:20
HEY ETHAN.... I LUV YOUR HAIRC UT....YOU LOOK GREAT!!! LOTS AND LOTS OF LOVE TO YOU FROM G RANDMA MARY AND PAPA PA [...]