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

September 3: Comfort from Friends

One year ago today, at about 3:30 a.m., Tillery went into emergency surgery to remove her infected shunt. We had been airlifted to Cincinnati the previous evening and, after a long day and night of no sleep and filled with anxiety and exhaustion, I sat in the surgery waiting room alone. I wrote a blog update on Tillery and the previous few days as a way to fill my time. About the time I published the blog, a friend came around the corner. Her 17-month old son had just been taken into an emergency surgery. He was in heart failure. My friend looked scared and exhausted and it felt like I was staring into a mirror. After we talked for a few minutes and caught each other up on our children, I was called back to the room to see Tillery after a successful surgery. I hugged my friend and told her I would be praying for her family. That was the last time I saw Amber. Her son, Parker, died that day.

Parker didn’t have cancer but this story is what it’s like to have a sick child. You make friends with other parents of sick children. You are there for each other when no one else is around. When everyone else you know is asleep, another medical mama is awake with you. We support each other and we become family. When one of us hurts, we all hurt.

As we raise awareness for Childhood Cancer this month, we also remember so many friends we have met along the way with sick children. We are a community that supports our own. We support each other’s fundraisers, share each other’s stories, and are always there when another needs a friend. The kids in our community have a variety of illnesses. We try to share their stories and their struggles so you can understand that the pediatric medical world is big and somewhat untalked about. Thank you all for listening and for sharing. Talking about it is the first step to finding a solution.

To donate to help end childhood cancer, please visit our link.

https://www.alexslemonade.org/mypage/1261673

September 2: 43 Daily

Every day in the United States, 43 kids are diagnosed with cancer. That means that every day, 43 moms and 43 dads have to process this devastating news. Every day, 43 families enter into this club that no one wants to join. September 30, 2014, our family joined the childhood cancer club along with 42 others. Tillery became a Cancer Fighter, we became Cancer Dad and Cancer Mom, and Luke became a Cancer Sibling. These labels will follow us always. On September 29, 2014, we were just like you.

No one likes to think about sick kids…until your kid gets sick. You want to know what all the Cancer Moms and Cancer Dads want you to think about? Our kids! Don’t ignore the 43 kids who will be diagnosed today. Don’t ignore the 1,290 kids who will be diagnosed this month, Childhood Cancer Awareness Month. In 2014, we didn’t know Childhood Cancer Awareness Month existed. Now, we live it every single day.

Help us raise awareness and raise funding! Go Gold in September!

#gogold #childhoodcancer #tilleryisloved #morethan4 #journey2amillion

Click here to make a donation to end childhood cancer.

September 1: Go Gold

It’s officially Childhood Cancer Awareness Month! Here’s how you can help us with awareness this month: Share our posts. Share our story. Share our girl.

I’ll be making daily posts here about childhood cancer and Tillery’s journey. Each post will have a link at the bottom to donate to our fundraising page for Alex’s Lemonade Stand.

Help us raise awareness and raise funding! Go Gold in September!

Link to our Alex's Million Miles page: https://www.alexslemonade.org/mypage/1261673
Follow our team's progress or make a donation.