More good news

Blessed…grateful…filled with hope…

We are so thankful to be where we’re at right now. Every day we watch Ethan continue to thrive, growing strong, having fun. We can’t express how happy we are, hopeful we feel, and the amount of faith we have.

Ethan went to clinic 10 days ago (Wednesday, April 16). He hadn’t been in 8 weeks, our longest stretch yet. He was scheduled for a bone marrow biopsy; the clinical study/protocol he is on for St. Jude Hospital (AML02) requires follow up biopsies. Ethan had the procedure done at clinic, under general anesthesia, and did a great job. We received blood work results during that appointment. Again, beautiful blood! His medical team was thrilled with Ethan’s progress and his current physical condition. His weight gain has tapered off, and he remains around 45 pounds, but is strong. They comment on his hair, skin and nails, stating that they are in great condition too, given what he’s gone through (radiation and chemo). Hair can sometimes be thin and sparse; Ethan’s hair right now is full, thick and curly! Nails can grow in brittle and have ridges, Ethan’s are strong and smooth. Ethan’s skin is sometimes a tad on the dry side, but overall his skin looks fantastic.

The following day (Thursday, April 17) we headed into Children’s Hospital Waltham to see Ethan’s Dr. of Audiology and have his “sounds” reprogrammed….a routine procedure we do about every 4-6 months. She’s a wonderful and kind woman. She actually came to our house over the winter to reprogram Ethan’s sound, as he couldn’t go to her office at that time. She was thrilled to see Ethan doing so well. It felt like we hadn’t been there too long ago. Obviously, it had been over a year though. These regular, routine things we do…as we start to do more of them, time plays tricks on me. It often seems as if it was just the other day we were doing those things, as if last year didn’t happen. It’s similar to returning from vacation, and the next day you forget you ever went on vacation.

Speaking of vacation, we decided to “hit the road” for “school vacation week”, and we left for my parent’s house on Friday (April 18). Yancy drove out with us on the 7 hour trip, as he had a business trip to go on the following week. He flew out of Rochester on Sunday, and returned on Wednesday, working from there for Thursday and Friday. This was our first trip away from our home in quite some time. It felt great to get away, and go to our home away from home, Grandma and Papa’s house. The week was filled with summer-weather-filled days, temps ranging from 70-85 degrees. My grandmother, the kids call her “Nana”, came up from her house to spend the week with us. There was bike riding, baseball, kickball, fishing in the evenings with Papa down at the “old pond”, skipping rocks and finding frogs in the “new pond”, riding the Cub Cadet with Papa and Daddy, and of course TV, movies, toys, etc.

Ethan and Emma rode Aunt Katie and Uncle John’s old bikes that Grandma has saved. Eliot taught himself to ride a two-wheeler with no training wheels literally minutes before we took off for this trip. We threw his bike in the back of the car, and took it with us. He is now pedaling like a maniac as fast as he can. He’s doing an amazing job riding for a three year old. Ethan started riding a two-wheeler when he was 4 years 2 months…we thought that was amazing. Eliot has now beat that, as he self-taught himself at 3 years 8 months.

We went to see a tree house in Rochester one day, at a man’s home, Maurice Barkley. He starting building this tree house about 9 years ago for his grandkids, and he’s been building ever since. It’s more like a tree house empire, filled with many structures and rope bridges connecting each, from tree to tree. The kids enjoyed it very much, and even our most fearful Eliot overcame his fears and was walking all about high up in the trees. This man published a book, Build Your Own Treehouse: A Practical Guide, and has been in several of the Rochester papers, which is where Grandma learned of him. (check out photos of this adventure )

While on our “vacation”, we heard back from Ethan’s medical team…his bone marrow biospy shows nothing but healthy blood. St. Jude’s very precise assessment of minimal residual disease (MRD) (able to detect as little as 0.1% of leukemic cells in bone marrow) showed 0%…nothing….nada…zip…zero…zilch…

HALLELUJAH!

For all of you that pray for Ethan, that keep him in your thoughts, that say his name…Thank you…thank you from the bottom of our hearts. We’ve achieved something amazing here, Ethan’s healthy and strong! We will continue to have so much hope and faith that he will continue down this path.

We’ve arrived home late Friday night, bringing Grandma back with us for the week. Emma had a FANTASTIC soccer game on Saturday, playing her first game on her new travel team. Today, Ethan has his first EVER soccer game, and then we’re headed to cousin Joey’s 11th birthday celebration. Happy Birthday Joey!

Ethan is officially off restrictions on May 6th, marking the completion of one year we’re happy to have behind us. We’re not due back at clinic until June 18th, for a routine check-up. He’ll then go back in August, for many routine 1 year post-transplant follow-ups, and he’ll receive his first round of vaccinations then (currently Ethan is not vaccinated for anything) so that he’s ready to attend 1st grade at Pine Grove School in September.

I’ll try to regularly update with our latest adventures, and we’ll post the soccer and baseball photos on www.lentfamily.org !