Fall 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…