36 Hours In Kitsbow: Not Quite out of the Woods

by Mary Bardell

 “I hope this film inspires other parents to provide their kids with experiences of adventure through bikepacking, and cycling in general. And for parents of kids undergoing medical treatment, I hope Eleanor’s smile and positive attitude encourages hope and strength, proving that happiness is found in pushing limits and seeking new experiences.” Adin Maynard, Eleanor's dad.

A film by Emmy-award winning film maker, Kate Geis.

36 Hours in Kitsbow is a short film series where regular riders tell their stories of how they rode near their home, for the joy of the ride, without spending a ton of money (or time) doing it. In other words, the bike adventure any of us can enjoy. Check back at Kitsbow.com for the next open application period for 36 Hours in Kitsbow grant funding, and film your adventure!


How is Eleanor/ Family?

Eleanor is doing well. Most of the time she is an active, well adjusted, happy 6 year old kindergartner. As mentioned in the film, for a week each month, she has an especially intense week of steroids (called Dexamethasone) , which rears its ugly head as unpleasant side effects impacting mood, appetite, and energy levels. Otherwise chemotherapy in the Maintenance Phase of treatment has been manageable- including the six cavities she has, attributed in-part, to bone strength loss from the cancer drugs. Every few weeks her blood is checked to confirm that the cancer cells are still at bay. Chemotherapy doses are regularly assessed and adjusted in slight amounts. Our care team at Bay State Medical, in Springfield, MA , has been outstanding .

To keep up with Eleanor’s progress, and get a more detailed look at our experience from her diagnosis last Oct, Please visit her facebook group: ‘ Eleanor’s leukemia journey ‘ [https://www.facebook.com/groups/172393193341013/

What do you (Adin) find most helpful... for getting kids out on bikes? Any advice on how to take the first step?

Just as humans evolved to eat minimal sugar and to fast intermittently during periods of food scarcity, kids are designed to move and play! Getting small children on bicycles is just an expression of that evolutionary trait. Our two youngest kids started riding on balance bikes, not training wheels. At three, I would bike with Eleanor on the local bike path and soon enough, she decided to go faster and committed to learning a 16” single speed pedal bike. From my experience with three kids (the oldest didn’t learn to ride until 7 !) , the ages of 2-4 are much easier to teach biking too, than 5-6. Younger bodies seem to be more comfortable with falling, and can more easily harness patience and focus needed to practice diligently. From a skilled balance biker, it takes maybe 1hr of dedicated practice, to land the skills needed to ride a pedal bike assuming bike fit is right.

Tips to getting young kids to bike ride:

Get the most bike you can afford - it is important for your young child to learn on a bike that fits, is designed well, and is not too heavy. Sure they will end up learning on a rusty bike found in the scrap heap, but to harness the desire and confidence to build skills including trail riding, traffic navigation, or endurance building- get the best bike you can afford. Think about weight: A 30-40lb child , should not be on a 25lb bike... that’s like you riding a 60-80 lb. bike proportionally. Would you want to learn on that? We love Early Rider for their fantastic design, weight, quality, and resale value.

Even the bigger brands are finally starting to ‘right size’ kids bikes.

Dial in Fit - Nothing peeves me more than seeing kids riding around with the seat way too low, You feed your kids and then they grow, check saddle height regularly! Beyond that, adjust stem length and height, pedal size, brake reach, handlebar width... dial in their fit . Not only will this help their confidence, but through the process they will learn a lot about bicycle fit and maintenance. Most bike shop employees I know, love nothing more than to help kids ride better- so if in doubt, take your bike in, along with your little rider.

When in doubt, bring the bike!  Family picnics, strolls on the bike path, road trip to grandma’s ... bring the bike. It will be used more than you think, and adjusting your routines and travel plans to accommodate bike practice and skill building, is good for your entire family. Bonus: Design a ‘practice bike riding’ birthday party, where friends can support each other and channel some motivating post-birthday-cake competition. Set up ramps and/or cones in a field or basketball court.

Where do you get that cool hookup for Eleanor’s bike? Do you recommend it?

The attachment is the Follow Me Tandem [https://family-cycling.com/followme- funktionsweise/] , a fantastic contraption from Switzerland (or Germany?) that beats the pants off of the common ’tag along’ sway heavy devices you see commonly. It’s $270, available in the US through Amazon https://www.amazon.com/FollowMe-Tandem-Parent-Child-Bicycle- Coupling/dp/B007ABVE4I?th=1, and has put so many smiles on our faces. It fits kids bikes from 16- 24”, and is especially wonderful for touring and long distance adventures. Note for thru axles, additional axles for the leading parent bike, is needing.

Adin was riding a Jamis Renegade Exploit. This steel ‘adventure bike’ is one of the best values in bikes. Great geometry, a decent spec, and clearance for 43mm tires.

Eleanor was riding an Early Rider Belter 20”, with 2” wide knobby Schwalbe tires. This 3 speed bike as been great for Eleanor. It is light, well balanced, and handles great on trail and on pavement.

Where do I learn more about these advanced treatments for childhood Leukemia? Eleanor had acute lymphoblastic leukemia.

A good resource for general information is the Leukemia & Lymphoma Society : https://www.lls.org/leukemia/acute-lymphoblastic-leukemia

There is some interesting research happening outside of the mainstream medical communities about metabolic cancer therapies. For general cancer treatment (not leukemia exclusively) nutritional therapies are interesting.

These include ketogenic, low glycemic diets, and intermittent fasting. A leading researcher in the space is Dominic D'Agostino: https://dominicdagostino.wordpress.com/

Any advice on how to maintain healthy nutrition when fighting Leukemia?

Immediately following Eleanor’s diagnosis, and with no nutritional therapy provided by the hospital, we hired a remote nutritional consultant . We got some good ideas and strategies, but it wasn’t very helpful . With basic awareness that cancer cells feed off of sugar (glucose), we were intent on getting Eleanor on a low glycemic diet. The chemotherapy drugs impact on taste buds and appetite, were far more powerful than good intentioned parents and their consultant. Eleanor ate well, but not necessarily ‘clean’. We decided early on that the emotional challenges of constantly negotiating meal times, was not good for our family. We tried food charts to empower her to make food selections. When she got into routines, we just went with it: chicken quesadillas every meal for a couple weeks.. for example.

My hope is in the future, research grows so that standard care includes nutritional therapy for all cancer patients, and especially children. Unfortunately, there is much less money in this path compared to developing more drugs targeting cancer cures and symptoms, so our profit driven healthcare system will need to evolve. I would also like to see Cannabis (CBD and THC) treatments evolve for child cancer patients.