mood lighting

Happy to be home, but life is quiet and dimly lit. This sums up our first couple days at home. Soren is enduring some crushing headaches and more nausea this cycle, which added to his list of pills. (Filling out the medication list for back-to-school forms is almost comical.) He’s thus been sleeping more than ever before and lying low, which his doctors think is for the best as he recovers.

Amazingly, we are hopeful that he might go to school next week. How cool?!

All hasn’t been gloom-and-doom. When cousin Ayla and Harlan returned from vacation today, he bounced off the couch and headed upstairs to play with them. After a while, the warriors emerged:

The pirate look serves almost-bald Soren well.

After playtime, Soren and Harlan conned Bubba to take them for another round of putt-putt golf. This is a good substitute for the batting cages these days. We are still DIGGING our new baseballs!

A brief but deeply heartfelt (belly-felt?) thanks to our incredible foodie friends who have fed us incredibly well recently. On these tough days, great meals really help.

mood lighting

Treatment is like an athletic season

On the drive home from Boston tonight, with Soren lying prone in the back with a headache, it occurred to me that cancer treatment has a similar rhythm to an athletic season. Given how many of you know long, exhausting athletic seasons very well, I thought you might appreciate this.

Let’s agree that the polarity of the emotions are usually opposite. Diagnosis is poignant and excruciating, but fueled by adrenaline.  The first week of training is also painful (in a good way), and also stoked by excitement.

After a few weeks you find a routine. This meal, snack, medicine, nurse, or incentive works, others not as well. Likewise, different teammates and drills are more preferable than others.

You might then have a few meaningful tests that give mixed feedback. Early season games or meets serve the same purpose.

And then, to build towards you goal, you double down, and your routine gets really hard. Everyone is tired, your little guy hurts a lot more than you’d ever want, and the parents also show some signs of wear and tear.  Swimmers: think of your second week of double workouts, when every muscle aches and you are doing your best to tolerate your teammates.

This is where we are. We are looking very much towards taper, but the season is still long and we have a ways to go. This is why your gestures, subtle or grand, are so helpful. They are the care packages in mid-January when you can’t stand another dorm meal.

"Cucumber headphones"
Creative use of yummy produce from our friends

PS: You got the main message, right? Soren is home for at least a few days, which is wonderful!

 

Treatment is like an athletic season

Six or sick?

This question has been in our mind a lot lately.  It’s easy to chalk up erratic or mis-behavior by Soren as being an expected side effect of cooping up one of the most active, energetic 6-yr-old boys you’ll meet in a hospital room for many hours.

Unfortunately, we keep re-learning the same lesson. Soren is very tough, so when his behavior is off, it’s because he’s not feeling well. He’s been dealing with a fair bit more nausea this round and a nasty headache likely caused by his intrathecal (spinal) treatments.  We’re using some of the tricks and advice you’ve provided and are using the many gift cards to buy comfort foods to make him happy.

In spite of this, we are hopeful that Soren might make it home tomorrow (Tuesday 8-27) night if all goes well, for at least a few days if his white blood cells and ability to fight infection cooperate.

Little brother Harlan is off to Nantucket for a couple days with Aunt Nicole, cousin Ayla, and Vaughn’s grandparents. This was a trip we’d all hoped to make, but we hope that he has enough fun for all of us. We’ll miss “Happy Harlan” a lot.

As always, thanks for your support!

Six or sick?

Little guy, big-time cheerleaders

Although he’s a bit embarrassed by the attention, we wanted to share a latest pick-me-up.

Courtesy of Jan and Griffin Nedelka, attending the USA Pro Challenge bike race in Colorado, click below for a personal message:

Argos-Shimano

Many thanks, because these gestures are great at snapping Soren out of moods made more frequent by the prednisone.

So far, so good, having made it through some of the uglier drugs. One of our favorite nurses was impressed that his hair was still hanging in. Yup, Soren even has tenacious hair.

Thank you!

Little guy, big-time cheerleaders

thankful

As Soren began another heavy cycle of chemotherapy today, we are compelled to start a list of the new things and experiences for which we are thankful.

  1. We’ll start with a definition. Soren now understands “chemotherapy” as “chemicals that make you get better.”  What a blessing that such tortured words can become so simple and detoxified by wide-eyed 6-year olds.
  2. The magic of our baseball, Jimmy Fund, and treatment communities. Someone found out that Soren’s favorite player was the center fielder Jacoby Ellsbury, because Soren fancies himself a CF (even though coach Mom wants him on the corners or the mound). Soren was over the moon when a surprise package arrived from Yawkey Way with an Ellsbury-autographed baseball, along with plenty of other cool stuff. Another package with an autographed Daniel Nava picture then came, with a sample of Fenway dirt. Soren is one happy little ballplayer, made even happier by…
    (pictures and more to come)
  3. ..our family of former teammates, back when we (Mom and Dad) were coaching collegiate water polo. Soren now has a growing series of official baseballs from major league teams sent by U of Michigan Water Polo alumni, along with notes that made Soren laugh and mom and dad cry. Not to forget countless incredibly thoughtful gestures from the Michigan State women’s water polo team that meant the world to us for many years.
    (more pictures to come)
  4. The resiliency of children, with the example of Soren’s toughest day being followed 48 hours later with a happy, healthy day of outdoor play (and then later fishing, and swimming, and nerf fights, and a trip to Water Country …)
  5. How childhood cancer is galvanizing. We are in awe to have been welcomed into the communities of the Childhood Cancer Lifeline, Partners in Health NH, and a growing number of support organizations.
  6. Our friends at Growing Places, UNH, and the aquatics and multisport communities, and everything you have done; this list is immense.
  7. Our complete confidence, and most of all Soren’s confidence, that he is being treated at the greatest place for pediatric cancer in the world. This is one of those magical places where every doctor, nurse, and caregiver is awesome.

We’re truthfully almost as anxious as we were at the start, knowing that Soren’s counts start lower than they were at the outset and he’s facing plenty of challenges. As always, one day at a time. A final thanks to those of you who are sharing your harvests with us: fresh produce makes us all especially happy. If any blueberries remain out there, Soren just asked for a pint for his room…

THANK YOU ALL.

thankful