This weekend marked the first time since the diagnosis that we could stop simply reacting and start getting back to living. Yesterday and today (though borderline fever prompted a call to Dana Farber to be safe), there were no nurse visits, doctor calls, insurance negotiations, medical supply shipments, or significant retelling of our story. The only novelty was Soren’s first and second shots by an unsupervised parent, and according to tough boy, dad didn’t do too badly. Thank goodness for iPad distraction…
Instead, Erika went to the gym for the first time since (briefly, worried), Vaughn rode the bike, Soren and Bubba threw the lacrosse ball and built a birdhouse from scrap wood, and Harlan resumed being the family entertainer. Later at the pool, Harlan jumped off the dock (yes it’s a weird pool) about 100 times, no exaggeration, swimming up to 10m at a time, and Soren himself got in a few times. So, great!
We also began to reflect on this “new normal” and, to us, the many, weighty differences.
As we’d been warned, because chemotherapy preferentially kills fast-growing cells, this includes those on the inside of the mouth and along the entire GI tract. So Soren has a number of mouth sores and his gut is unpredictable despite medication. Though he complains little, he is not the same ravenous eater. Even more noticeable is that Soren has a fraction of his normal energy; telling him that it’s ok to take a break is new for everyone. For us, this can be heart-wrenching. Yet we are so happy he’s home and disconnected from lines, etc.
The scope, enthusiasm, and sincerity of your support for us is also sinking in. WOW. We took stock of your donations and are so incredibly grateful. They are already so helpful. We’ve loved more than a week of delicious meals and know more are coming. And nearly every day brings a new card or more with a thoughtful message that brings a tear to our eyes. This is an emotional rollercoaster we’re happy to be on. We all want to say thank you, repeatedly, and are sorry it will take a while for personal thank-you’s.
A couple of quick announcements, more to come:
We are thrilled that our local swimming community has arranged a benefit for Soren, described here and with a link on the front page. In addition, our friends at Tri-Star gymnastics are planning their own event(s), to be announced soon. We sincerely hope that Soren stays on track and we’ll be able to use excess proceeds to support the pediatric oncology group at Children’s/Dana-Farber, and/or the Leukemia and Lymphoma society down the road. In the meantime, we are only beginning to grasp the scope.
This note took awhile to write because time at home comes in fits and starts for any family with young kids. Unfortunately, Soren and Erika just left for our local hospital for a blood draw because his fever crossed the threshold. We will keep fingers crossed that we don’t wind up in Boston tonight. Regardless, we will know that we’re in a great many of your thoughts, including those we wouldn’t have anticipated. I’m posting a copy of one that really floored me, among many. I hope he doesn’t mind, but maize-and-blue, green-and-white, blue-and-white, or name-your-colors, we’re honored to be part of your family.
UPDATE: Yup, Soren and Erika are on their way to Boston Children’s by ambulance (precaution and rules, not need). He is feverish and neutropenic but generally just cranky. Soren thinks the ride is cool, but said “I told you so,” to us. He was playing Angry Birds at departure. Momma and the rest of us aren’t as enthusiastic.