September 10: It’s a Marathon, not a Sprint

When we learned Tillery’s tumor was a low grade glial tumor that was slow growing but in a risky location to fully be removed, our oncologist said, “Tillery’s treatment will be a marathon.”

She meant that there was not a quick treatment plan that we could sprint through. Instead, we needed to be prepared for a long and steady battle. Pacing ourselves would be important as this will be more like a long-lasting, chronic illness than a cancer that is “beaten”.

Tillery has been in treatment for almost 2 full years. She has 3-1/2 more months to go on this chemotherapy cycle and then we will schedule another major brain surgery. After that, we will take a break for a while and let us all take a rest.

This morning, Tillery’s daddy is running a half-marathon. He’s done a full marathon and 3 other half marathons in the past. This is his first long distance run since Tillery’s diagnosis and he’s much better prepared and training was easier this time. Maybe that’s because we are living a marathon and have learned about training hard, fighting back, and taking rest breaks, as needed.

We are so proud of Daddy! Leave him an encouraging message below to let him know you are proud, too!

All month, we are fundraising for Alex’s Lemonade Stand’s #journey2amillion miles for childhood cancer. Today, we are asking for donations of $13 for the 13 miles Joe is running this morning. Visit his fundraising page here: http://www.alexslemonade.org/mypage/1261673/member/296675

(He also did a 5k last night before the half today to earn an even cooler “Black Bear Double” medal!)

September 9: Trot Time

Have you been waiting for the right day to register for the Trot for Tillery 5k? TODAY IS THE DAY!

Two generous donors have agreed to give $10 per registrant if you register today. That means, when you pay $30, we actually receive $50! (Thanks, Sheyvon and Kathy!)

The Trot for Tillery 5k is an actual 5k held in Sylacauga, AL on October 8, but you can also participate as a virtual runner. As a virtual participant, you can register online and then send us a message to let us know you will participate from another location and we can mail you a shirt.

Participants will have the chance to trot alongside Tillery and the Phillips family.

Funds raised through the Trot for Tillery are used by the Phillips family to cover costs of living with a childhood cancer diagnosis. These costs include travel to and from Cincinnati, hotel stays, and dining in the hospital cafeteria or local restaurants while away from home. The funds also help the Phillips family survive as a primarily one income family. Alana was out of work for 2 years to be able to be a full time caregiver for Tillery during the critical times in her treatment. Now, Alana has returned to work in a part time capacity but cannot commit to something full time or permanent until Tillery is through the next major surgery in early 2017.

We’d like to raise enough money to also help us fund the launch of The TIL Foundation. Our goal is to become a 501(c)3 so that we can hold our own fundraising events to end childhood cancer.

To register for the Trot or make a donation, click here.

(Photo from the 2015 Trot for Tillery.)

September 8: Team Chaseman and Tillery is Loved

In September of 2013 we spent a night out with our friends, the Busbys, in what was the first and only time both of our whole families were together in one place. Almost exactly a year later, our youngest, Tillery was diagnosed with cancer. Almost exactly a year after Tillery’s diagnosis, their youngest, Chase was diagnosed with cancer.

Joe attended college with Cassie and Chris and was a groomsman in their wedding. When we got married, Chris was a groomsman in our wedding and Cassie was about 8.5 months pregnant with their first child. We have known each other for many years and have experienced many things in life together but there are some experiences you never want to share with your friends.

When Joe got the call from Chris, they were in route from a local hospital to a children’s hospital for testing. Initial bloodwork showed abnormalities that could be leukemia. After the roller coaster year that we had just experienced, the last thing we wanted was to hear of any childhood cancer diagnosis, especially a close friend.

Today, a year later, Chase is doing well. He’s in remission but will still receive chemotherapy for 2 years to make sure that nothing returns. Like Tillery, if you didn’t know his story, you would never guess he’s sick.

When you think of childhood cancer, you may conjure images of sickly, bald kids in hospital beds. There is another face of childhood cancer, though. Faces of kids who blend into your world. Kids who could walk right by you without you knowing. Those kids take immunity compromising medicines, regularly have poison pumped through their veins, and will experience lifelong health issues as a result of their diagnosis or treatment. Kids like Chase and Tillery are the “lucky” cancer patients because they get to do an awful lot of normal things. But sit and talk with the parents, the siblings, or even the cancer patients themselves and you will quickly see that being “lucky” with childhood cancer is still scarier than any nightmare you’ve ever had.

We know many families who have children with cancer and we have many supportive friends who have known us for many years. The Busbys are the only people who understand what it is like to be a cancer family and also knew us before diagnosis. In that way, we share a special bond of friendship.

We look forward to the day we can get all of our crew together again for another night of normalcy. It sure would be nice to watch Chase and Tillery play together.

Here’s a story about Chase from their local paper yesterday: http://goldenisles.news/news/local_news/pre-schooler-valiantly-battles-leukemia/article_be1bcd6d-3289-5636-a3bc-414ce1ef8121.html

Here's the link to our fundraising efforts this month: https://www.alexslemonade.org/mypage/1261673

September 7: One Week

We are one week into Childhood Cancer Awareness Month. Here’s a glimpse of what one week in the childhood cancer world looks like.

Around the world, 4,900 kids have been diagnosed with cancer and 1,750 kids have died from cancer SINCE SEPTEMBER 1! Still think Childhood Cancer is rare?

Make a donation to help us find a cure. Visit our fundraising link here.

September 6: The First Month

You have all joined us at different stages along our journey. For those who have been with us from the beginning, you may remember the images from today’s post. For those who have found us along the way, allow us to take you back to the beginning. If you will give us 4 minutes, we’d like to share the first month of our journey with you.

Some of it is hard to see, but we lived it and we survived it. It didn’t get easier from there. In fact, things actually got harder before we started to allow ourselves to breathe. Today’s post is just a snapshot of what childhood cancer looks like.  

As you watch this video, please know that with every ache of our hearts is also a joy that Our God is mightier than anything childhood cancer can send our way. He was faithful during that first month and has been every single day since. We do not know what the future will be, but we know Who holds it and Who will walk with us through it. Our Hope is in Him.

Watch video here!

Please share on your timeline. Ask your friends to join our fight by following our page, donating to our fundraising link, or just watching this video and becoming aware that childhood cancer does exist.

To make a donation to Childhood Cancer research and to help families, visit our Alex's Lemonade Stand fundraising page here.

September 5: Kids are Different

Yesterday, I told you that only 4% of government cancer research funds go towards childhood cancer research. This video does a great job of explaining why children need to be treated differently than adults. Notice that when it goes into the long term scary side effects, the person is a female with a side ponytail. As I watch this, I think of Til and the long term fears I have for her.

This video is done by St. Baldrick’s Foundation. They are a wonderful group that funds childhood cancer research. They are known for their fundraising through head shaving and we know many mamas who have shaved their heads to raise money for them. Our fundraising focus this month is Alex’s Lemonade Stand for their #journey2amillion but if you are interested in other organizations that are amazing, this is one!

To donate to our efforts this month, visit https://www.alexslemonade.org/mypage/1261673.

September 4: Let’s talk about 4

The National Cancer Institute is a government funded division of the National Institute for Health. The research funds the NCI receives are government allocated research funds for cancer. Of that funding only 4% goes to childhood cancer research.

That means YOUR MONEY, your tax dollars, your government funded cancer dollars are being allocated 96% of the time to adults. You may think, “Hey, I’m an adult and if I get sick, I want to be looked after. I don’t want to suffer a horrible illness with no good medical options. I want mild side effects and I want to be cured!”

That all sounds good. Too bad our kids don’t get a voice in that.

See, the National Cancer Advisory Board does not have any pediatric oncology representation. A bunch of adult doctors are making all the decisions on how childhood cancer information is tracked and how research is funded. The kids need one of their own to be their voice!

You will see the hashtag #morethan4 used a lot as a way of saying our kids need more funding. A more action-oriented way of doing that is to contact your legislators and tell them to sign the STAR Act. The STAR Act demands better tracking and research on childhood cancer patients. The STAR Act pushes for better long term outcomes for childhood cancer survivors. (Tillery will be a survivor, but what will her medical makeup look like after so much chemo so early in life?) Perhaps most importantly, the STAR Act gives a pediatric oncologist a seat at the table to be the voice for kids like Tillery.

To learn more about the STAR Act or to find contact information for your legislators, visit this link. http://stepupforchildhoodcancer.com/take-action/star-act/

To help fund an end to childhood cancer, donate to our #journey2amillion here.

#morethan4 #STARact #tilleryisloved #stepup