Progress

This is just a rather plain update of daily living news…No medical news to report. I miss writing. It’s rather therapeutic.

I’ll start with something rather important that I forgot to mention from Ethan’s last clinic visit: Ethan gained 3 pounds in between clinic visits (4 weeks)! I would say Ethan is in top form, physically and emotionally. His energy is endless, and his appetite is really coming back. He’s eating pretty much everything these days, and declared a few weeks ago that his taste buds were back. A combination of chemotherapy, radiation, antibiotics and other meds continued to alter his taste buds. Now that he’s off almost all meds, his original sense of taste is back. For some reason he does not like peanut butter now (he did before), but does has a love for his old favorites: pistachios, ham, kiwi, strawberries, hummus, cucumbers, many cheeses: smoked gouda, jarlsberg, cheddar, mozzerella, etc, sausage, you get the idea. He’s packing it in, making up for lost pounds.

Last clinic visit, the nurse practitioner told us we could very gradually ease up on restrictions: we could have one additional person in the house occasionally, we could take Ethan into a public place that was not crowded (as long as he’s not touching a ton of stuff), and we could ease up on his food restrictions (he is/was on a low bacteria diet). We took advantage of these liberties, and the kids and I ventured into a garden store the other week. We were the only customers in the store, and Ethan was very good at not touching one thing. The kids each picked out 2 packets of seeds, and we picked up some seed starter accessories. While giving up browsing/shopping together in stores is/was not a great sacrifice for us, considering what we’ve gone through, it was rather exciting for us and Ethan had a great time. It symbolized a new milestone, and perhaps the return to a more “normal” life. We tend to our sprouting seedlings daily now, anticipating the warm day we plant them in the ground: morning glories, forget-me-nots, sunflowers, and lavender.

Emma has made such great sacrifices this year, I felt it was only fair that she was the first to have a friend over to play. So, she finally had a friend over this week. Her friend has been such a good friend to her, as well as her friend’s family. It meant a lot to Emma to be able to invite her over. It was much appreciated by Em. It won’t be a regular occurrence, but continue to be a “special” thing, until Ethan is completely off restrictions.

Progress…this is all progress. And we don’t take one bit of it for granted. We’ve also made progress in areas that we regressed in this year. I got rid (okay, hid) all the sippy cups in the house. Sippy cups were an integral part of getting Ethan to drink 50 ounces a day, a requirement for the last 8 months. Now that he’s no longer on the immunosupressant (harsh to his kidneys), he isn’t required to drink that much. While these no-spill cups are a great convenience, at some point you have to get rid of them. He’s not missed the sippy cups too much, although I think he’s probably been drinking about 20 ounces less a day. And Eliot has done just fine without them too.

The decrease in fluids was helpful in the next accomplishment: Ethan is no longer wearing pull-ups at night. Obviously a very minor set back of the year, pull-ups were a necessity at night due to abundance of IV fluid, treatment side effects, weakness, etc. Ethan is very happy to now be back in his undies at night, and I’m very happy to be halve the amount of pull-ups we use and not change wet beds so frequently.

I’m realizing that we are straddling two worlds right now…the cancer world, and the “normal” world. As we grow closer to entering the “normal” world, I think of the impact the cancer world had and continue to has on me. I continue to hope and pray that we will never be in the center of the cancer world again, with Ethan, or our other children. However, I can’t abandon that world either, the families we met, or the institutions and people that nursed us through that horrific journey. So we easily incorporate it into our lives going forward, never dismissing that we had this extremely intense life experience, and trying never to take life for granted again. Looking at our some of our Spring/Summer 2008 plans, we’re already incorporating both worlds into our lives.

This spring we will attend a three day camp specifically for cancer families. Remember the artist, Kevin, that used to paint with Ethan every Thursday in the hospital? He was from a non-profit organization started by Paul Newman, The Hole in the Wall Gang Camp, based in Connecticut. They hold one or two family weekends a year for families that have children with cancer. I checked their website out, the camp looks phenomenal. I’ve also heard from Kevin, and several medical professionals that it’s a great experience. So, we look forward to May 9th and 10th for so many reasons: to celebrate Ethan’s strength and determination, to celebrate what he has accomplished in one year (Ethan was diagnosed with AML on May 7, 2007.), to share a fun camp/outdoor experience together as a family, and to meet other families that have gone through similar experiences as we have.

In August, Yancy will participate in the Pan Mass Challenge (PMC), riding in honor of Ethan. The PMC raises money for life-saving cancer research and treatment at Dana-Farber Cancer Institute through an annual bike-a-thon that crosses the Commonwealth of Massachusetts. Yancy will ride the two day bike route from Sturbridge, MA to Providence, MA, the tip of Cape Cod, totaling 192 miles. For Yancy, as well as others, “riding in the PMC is a way to channel physical, mental and emotional energy into something much greater than the athletic accomplishment that is gained by riding up to 192 miles”, (taken from Why We Ride, at www.pmc.org). I couldn’t say it better myself… (notice that I cited the source?…only funny to some ). For those of you that have already made a donation – thank you, thank you. We’re so grateful for all you have done for us this year, and to donate to the PMC on top of that, thank you. If anyone is unsure of what charitable donation(s) to make this year, think about donating to the PMC. In 2007, the PMC donated 100% of every rider-raised dollar directly to cancer research and treatment at Dana-Farber Cancer Institute through its Jimmy Fund. Obviously, it’s a cause that will be our cause for many years to come. There’s a link on the right side of the blog if you’re interested in donating to the PMC. While you’re here, check out the In HONOR of ETHAN VIDEO.

We continue to pray, and send our strongest healing and powerful thoughts to two children and their families: Tim…9 years old… and Jonathan….14 years old. And little Mary, while I don’t know her, I pray for her daily. They need prayers, they need miracles…

I don’t think there will be a date that marks the end of this journey for us. I think that perhaps this journey will continue but in a more positive way, a new direction, with Ethan healthier and stronger. We’ll turn this into something positive. We’ve been given that chance.

And the “normal” stuff? It’s only weeks away!!! Ethan starts soccer and baseball next month! He is so excited. He has his baseball gear all set up in his “baseball” drawer, and his soccer gear all set up in his “soccer” drawer. And Emma starts travel soccer next month too. So, “normal”, here we come! Juggling activities, evenings, games, etc…now that’ll be fun!

Wishing you all warm weather for egg hunts, a fun-filled family holiday, and many sweet treats.