A brief entry…but a fabulous one… Ethan went into clinic last Wednesday, April 29. We’re thrilled to report he is one HEALTHY BOY! He hadn’t been in for a regular check-up since October, 6 months ago. Thursday will mark 2 years since the day he was diagnosed. We are blessed to be where we are today, and continue to have such great hope! Thanks for staying tuned in, and sharing this journey with us.

A retrospective to come soon…

I was asked to spread the word about a bone marrow donor drive in Boston, on April 19th and 20th. The 20th is Patriot’s Day…Boston Marathon. If you’re in Boston, can spare an hour, and want to try and save a life, check this out: Bone Marrow Donor Drive for Eve .

Driving in the car very early yesterday morning, Ethan rambles on about random things, when out comes:

“Life is my best moment…”,

Suddenly, my day is put into perspective.

Ahoy Maties! We had the honor to attend the Make-A-Wish Gala last night in Boston. The kids were invited to participate in the event. They went up on stage around 9:30, in front of ~400 guests, donned in their pirate regalia. Ethan’s story was shared, and then he picked the raffle winner of the diamond earrings, and they pulled them out of Ethan’s treasure chest. The event was amazing, and very successful, raising over $100,000 for the Make-A-Wish Foundation of Massachusetts. See them on stage in the video below:

Play Video

I took Emma out for Ice Cream tonight to White Farms. It’s a celebratory visit to dairy land due to her outstanding report card. On they way I asked one quesiton that put everything into prospective. “So Emma, what are you happy with Summer on the way.” The first answer. The ‘hot’ weather, the second answer, getting her list of books to read over the Summer. She is truly amazing. We had a really great conversation on the way home. One that built on that. We talked about running and how it’s said that “My sport is your sports punishment”. Running is the foundation for building on all sports. Much like how reading is the building block for all her endeavors at school. I think the premise worked. Hopefully it will let her know that what she does for fun with transcend into all facets of her school work. The bonus plan, maybe she also got the hit about running and will become a runner like her Dad .

Emma, congratulations on your fantastic report card. I am very proud of you.

Dear Family, Friends, Co-Workers, Friends of friends, the Lotus Community, (and whoever else you could forward this to!),

Almost two years ago (22 months to be exact), Yancy and I sent out an e-mail sharing our devastating news…our son Ethan, who was five years old, was diagnosed with leukemia. The doctors gave him less than a 30% chance of living. Since then, most of you have followed Ethan’s unchosen journey, which resulted to a miracle, and has now transitioned into the beautiful life of a typical seven year old boy. Everyone’s prayers, support, powerful thoughts, love and friendship carried us, and Ethan, through our worst nightmare.

While I am overjoyed and blessed to have Ethan still with us, and our two other healthy children, I still struggle emotionally. How could I ask for more than that? But, knowing that other children are still struggling with cancer, or have lost their lives to cancer, kills me inside. I wonder why I get to keep my son, while another mother loses her son. I think about this every day. Currently, it’s my personal struggle. I wonder what I am suppose to do with “our experience”. I haven’t quite figured it out yet.

Many of you generously supported Yancy last year for his 2-day, 200 mile ride in the Pan Mass Challenge, from Sturbridge to Provincetown, MA. He rode hard, had an unbelievable emotional experience, and was proud in the end that he had more than doubled his fund raising goal of $4000…thanks to so many of you, Yancy was able to raise over $9000 for the Jimmy Fund and Dana Farber Cancer Institute. Every dollar of the $34 million that the 2008 PMC raised, goes to cancer research, the families of children battling cancer at Children’s Hospital Boston, and the adult patients across the street at the Dana Farber Cancer Institute. Almost everyone knows someone who went there, or goes there: moms, dads, sisters, brothers, grandmas and papas, aunts, uncles, cousins, neighbors, teachers…unfortunately, the list goes on.

I don’t want to lose that priceless perspective on life we gained through this unchosen journey we’ve traveled. I want to stay connected, I want to help, I want to give back. This year, I choose to ride the 2009 PMC. I haven’t biked 200 miles before. I think 20-30 miles is probably the most I’ve ever biked. I’m pushing myself out of my comfort zone, knowing that Ethan’s strength, and the strength of all the other Superheroes out there, will carry me to the end.

This year, the fund raising minimum is $4200, and in this state of the economy, I realize that every dollar in your pocket is precious. If I could ask you one more time for your support. Any amount. No amount is too little.

I will pray while I’m riding. For miracles. For healing…healing of children. And healing of families that have lost their children. I will ride in honor of my Superhero, Ethan…and Charlie, Connor, Candy, Jane, Mary and Susan. I will ride in memory of Tim, Jessie, Jonathan, Brave Will and Uncle Martin. I will search for my purpose, my mission. I will try to come up with some great thing that I can do. Some way that I can make an impact. Perhaps until I come up with this, I will keep riding the PMC…knowing that every dollar counts.

I will post my training progress, my fundraising progress, and most importantly, Ethan’s continued progress, on our family website, www.lentfamily.org . Thank you, from the bottom of our hearts, for supporting us in so many ways over the past two years. I can’t believe we’re asking for more…but together, I think we can make a difference. Please visit http://www.pmc.org/mypmc/profiles.asp?eGiftID=JL0283 to make a contribution, and a difference.

With love, much gratitude, and great hope for a cure,

johanna

p.s. please forward this on, to a friend or two, letting them know their help is greatly appreciated. thanks.

p.s.s. team superhero currently has 3 riders (johanna, kate (johanna’s sister), and susan (superhero charlie’s mom)…we would love for you to join us if you think you’re up for a challenge! think about it…

This blog entry is way overdue…I don’t even know where to start…so many thoughts…so much time has passed since my last update. Let’s just start with the most important stuff!

ETHAN’S HEALTH: Ethan is doing so well! His last clinic appointment was on October 29…in which he passed with flying colors. All blood work looked great. They told us to come back in six months…six months?!!!…that puts us in April 2009. They couldn’t even book our appointment, as their calendars didn’t go out that far. As always, they tell me if I have any concerns in the interim, call, e-mail, come on in…they’re always there for us.

1st GRADE: We never predicted that Ethan’s adjustment to first grade would be so seamless. Socially, academically and emotionally, he is thriving. We have occasional mornings that he doesn’t want to go to school…I think it’s really related to how tired he is. We really couldn’t be happier for how well he is doing.

Holidays were amazing…full of joy, gratefulness, love…and food of course. And Ethan turned seven. We’re blessed, and continue to be full of hope. Our holiday vacation was fabulous. Lots of fun, games, family, ice skating, movies, rest…so good, all of us wanted it to keep on going. But inevitably, we return to work and school..

And upon that return, Ethan blossoms…he seems to be full of energy, full of laughs and giggles. His reading skills are emerging. The other night was unforgettable, as he giggled and commented while he read the entire book of Morris the Moose to me in bed.

He starts taking karate…and loves it. He has a smile from the moment he walks in, ‘til the moment he leaves.

Our dream is coming true…Ethan is growing up…Ethan is reading…Ethan is learning new things every day.

Emma and Eliot are thriving as well. Yancy and I are becoming more relaxed. While we are in a “normal” routine of life, we try our best to maintain perspective…don’t sweat the small stuff…remember where we’ve been…remember what we have. We make time for our health too…

Yancy has begun training for a marathon in May. He recruits Nick and John (Johanna’s brother-n-law and brother) to run too. I decide to ride the PMC this year…mainly because Kate, my sister, has said she would ride with me. I’ve never done anything that arduous in my life, but know that our experiences, Kate at my side, and thinking of others will get me through it. We found a bike, and next week, January 20th, Kate and I will sign up for and commit to the weekend ride of 192 miles. The next seven months will be filled with learning a new sport, and much training. I look forward to it…

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.

What an amazing wedding! I’m posting these here to ensure everyone gets the full size originals.

Photos 457 MB / Videos 135 MB / Lyrics 2K.

- Enjoy

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…