September 30: Thank You

It’s hard making these daily posts. It’s hard to relive it all and it’s hard to read through all the scary statistics that make up our life. Putting the possibilities in front of our mind brings the fear to the surface even when we want to bury it.

But we share for Tillery. Like all parents, we want the best for our daughter. Right now, the best is weekly chemotherapy and quarterly MRI’s. Next year, the best becomes regular blood draws and quarterly monitering. The best in her future includes trying to fit in with peers while we wait to see what side effects the medication she takes now will cause in the long term. The best the medical world can offer us is a stable tumor that will stay in her head forever. We say their “best” is not enough!

Thank you for caring and sharing and giving this month. Your support helps us not feel alone in this crazy childhood cancer world. Raising awareness will help our daughter have better. Raising money will fund the research to get us there.

Here’s a video of our 2-year cancer journey. Thank you for being a part of it with us.

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

September 29: Becoming a Cancer Family

On this day two years ago, we were just like you. We knew of people in our lives who had battled cancer but it wasn’t our story. We were healthy adults with healthy children. Tillery had only ever been to the doctor for well checks. Then, at her 15-month checkup, her doctor made some referrals to specialists to try to determine why she was physically delayed and included in those referrals was an appointment for an MRI to “rule things out”.

On this day two years ago, we dropped Tillery off at school, like every morning. I reminded her teachers that she would be out the following day because she had a doctor appointment. I told Luke’s teacher that my mom might pick him up the next day if Tillery’s appointment ran late.

On this day two years ago, we discussed how nervous we were about having Tillery be put under anesthesia. It seemed like such a scary thing to leave your child with a medical team and then have to walk away. What a heartbreaking thing for a parent to prepare for!

On this day two years ago, we were just like you.

Then, the next day, we took our daughter to a hospital for the first time ever. We held her as she was put under anesthesia for the first time ever. We left her with a medical team for the first time ever. We sat in a waiting room waiting for word about our daughter for the first time ever. We became a cancer family for the first time ever.

But, on this day two years ago, we were just like you.

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

September 28: Alex's Lemonade Stand

Thank you for so many donations to our Alex’s Lemonade Stand fundraiser this month. We have topped $3,000 in online donations and the month isn’t over and we aren’t done yet!

$3,000 will fund a week and a half of research! What an awesome thing for us to all be a part of! Donations made on the fundraising page have ranged from $5 - $478 and everywhere in between. Every little bit counts as your small donations have made our overall contribution larger and our contribution goes into the larger pot for the month that is over $500,000!

In addition to funding childhood cancer research, Alex’s Lemonade Stand Foundation aides families with travel expenses. On October 11, 2014, Tillery was discharged from Cincinnati Children’s Hospital and we moved from living in the hospital to living in the Extended Stay America in Blue Ash, a suburb of Cincinnati. That hotel room was paid for by Alex’s Lemonade Stand Foundation. We had considered going home to TN for a few weeks and then coming back to Ohio to begin chemotherapy but Tillery’s team urged us to stay local and her social worker arranged a room through ALSF.

That room made a huge impact on Tillery’s future. Four days after being discharged from the hospital, Tillery became very fussy and we ended up taking her in to the ER to have her checked. It was discovered that Tillery had developed a blood clot in her brain from the surgery and she was at a critically high risk for having a stroke. Because we were staying locally, we were able to have her team, the ones who had just weeks before performed a major brain surgery, lead the next steps of her journey. That medical team saved her during that stay. THAT is the value of a hotel room paid for by ALSF.

We also received gas cards through Alex’s Lemonade Stand that kept Joe on the road between Chattanooga and Cincinnati. Joe would have travelled back and forth regardless of the gas cards but the ease of burden at a nightmarish time for our family was a gift you cannot put a price tag on. THAT is the value of a gas gift card supplied by ALSF.

The research matters, the family support matters, and your support matters. When families face a childhood cancer diagnosis, they all want two things: some comfort and a cure. ALSF is working on providing both.

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

(We are ranked #38 out of 435 teams nationwide in fundraising!)

September 27: End of 100 Miles

Walk with me at the end of 100 miles of childhood cancer awareness.

Give to our fundraising efforts to find a cure: https://...www.alexslemonade.org/mypage/1261673

September 26: Meet the Fighters

Childhood Cancer is something people don’t like to talk about. It makes them sad and uncomfortable. This month, we’ve asked you to help us share some facts and stories and push your friends and maybe yourself out of your comfort zone. Every time you read one of our posts, you join our cause. Every time you share it, you raise awareness. Every time you donate, you help kids.

We wanted to share with you some names of friends we have met along the journey. These are not all the kids who have touched our hearts over the past two years, but these are the cancer fighters. Some of these children are in remission, some are still fighting, and some are in Heaven. All of these kids encourage us to keep doing what we are doing to raise awareness and increase research funding. Read their names, whisper a prayer, hold them for a moment in your heart.

Tillery – Easton – Timothy – Chase – Destiny – Bennett – Wyatt – AJ – Peyton – Cody – JoshuaJohn – Iyana – Oliver – Conner – Caralyn – Jayna – Macie -  Haiden – Bailey – Dallas – Peyton – Zach – Tony – Lauren – Luke – Leah – Christian – Cody – Levi – Rhyland – Cheyenne – Jordan – Mattisyn - Alexa

We encourage you to learn a few of these names. Ask us their stories and allow us to share about some of our heroes who inspire us daily.

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

(There are 34 names here. Statistically, 1 in 5 children with cancer do not survive. The number for this group would be around 7. The actual number from this list is 11. Eleven of these kids did not survive. Another 5 have a terminal diagnosis. Only 18 of these kids is medically supposed to survive their cancer. Our daughter is one of them.)

September 25: Years Lost

Loss of life is hard at any age. Family and friends grieve for the person they have lost and spend time remembering all the times they shared. Obviously, when a child dies, their time on Earth was shorter than if they lived until adulthood but have you ever wondered how much shorter?

Childhood cancer deaths rob an average of 71 years of life. In adults, the average number of years lost is 15 years. Fifteen years is still too many if that is your loved one but in kids, cancer takes almost 5 times the number of years!

The average age of cancer diagnosis in adults is 67 years old. In kids, the average age is 6. SIX YEARS! In adult cancers, the average age is a grandparent and in childhood cancers the average is a 1^st grader!

If we put more money into childhood cancer research, those 1^st graders can grow up to be adults. As adults, they can choose careers in medicine to help others or be nurturing and empathetic members of our communities.  Imagine all they could accomplish in their extra 71 years!

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

September 24: 1 in 285

September 24: 1 in 285 Diagnosed

Here’s a #childhoodcancer statistic for you: 1 in 285 children will be diagnosed with cancer before the age of 20. Tillery’s big brother, Luke, goes to an elementary school with 555 kids. That means that of the kids that he walks the halls with, plays on the playground with, and eats lunch with, statistically, 2 of them will be diagnosed with cancer while they are still a kid. 

There are 57,800 kids enrolled in Knox County Schools. Statistics say 203 of them will be diagnosed with cancer. Think of your child’s school, how many would be diagnosed? Think of the number of kids in your community, how many?

Does Childhood Cancer still sound rare?

It’s time to stand up for the kids. It’s time to raise awareness and raise money. It’s time to say they deserve #morethan4. It’s time to make some noise!

Join us! Share this post, donate on our fundraising link, and write to your state representative. We can’t do it alone. WE NEED YOU!

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

September 23: Moving

Tillery’s physical delays are what led us to a diagnosis. By her first birthday, she wasn’t standing and wouldn’t even straighten her legs. She was sitting on her own and crawling around at 12 months but by 15 months, she was only crawling when necessary and was having a hard time balancing herself when sitting.

After diagnosis, Tillery began physical therapy and had weekly sessions, sometimes even 2 sessions a week. Where many children walk by their first birthday, Tillery walked for the first time 53 days before her 3^rd birthday.

Here’s a video of Tillery’s physical progress over 2 years. http://www.kizoa.com/Video-Editor-Movie-Maker/d65972763k6648678o1l1/physical-therapy

To make a donation to our September fundraising page, follow this link: https://www.alexslemonade.org/mypage/1261673

September 22: Blood Donation

When we say blood donation saves lives, we don’t mean it in just the generic sense. We mean that on October 2, 2014, November 15, 2014, and April 2, 2015, blood donation saved our daughter’s life.

We talk a lot about funding research for a cure. We are passionate about fundraising and finding a way to save these children. But money can’t buy your blood. You must give it.

Hate needles? Tillery has had over 200 “pokes” in the past 2 years. Hate the idea of having to sit in a chair with a tube coming out of your arm for 15 minutes? Last Fall, Tillery spent 8 weeks in a hospital bed with a tube coming out of her brain and another tube coming out of her heart. Have I guilted you enough yet?

Good! We are having our first Knoxville blood drive on October 22^nd and we invite you to come and give life. When we were in Chattanooga, we had over 100 donors give in Tillery’s honor through Blood Assurance and now we are teaming with Medic to find heroes in Knoxville. If you aren’t local, we encourage you to search for a blood donation location in your area and give with Tillery on your mind.

Knoxville friends, mark your calendars: 9:00 – 2:00 October 22 at Norwood UMC. If you will be there, we’d love to know so we can work on a rough headcount. They will set up in our fellowship hall and can bring more staff and equipment if we determine they will need it. Let’s make them bring all they’ve got!

Feel free to share the attached flyer or print and post around town. 

Tillery receiving a blood transfusion while on chemotherapy that caused her to lose almost all of her red blood cells.

To donate to our efforts to end childhood cancer, click here.

September 21: Local Press and International Fame

This morning, Tillery is in the local Norwood/Powell Shopper News in the Knoxville News Sentinel. This month, an article about Tillery also ran in Motherhood Magazine, the top parents magazine in Singapore. That's right, Singapore! Her story is international!

You know what I wish though? I wish no one knew her name. I wish we could be an off the radar family. I wish we could be so boring that no one wanted to do a story on us.

That said, we have a story to tell and we will gladly shout it from the rooftops. We have watched children suffer and we have watched children lose their lives to this horrible disease and we are DONE! Local news, national news, international news...we will take it all if it raises awareness and someone, somewhere joins our cause. We want to stop having reasons to fill September with facts. We want to stop having friends with sad stories to tell you about. We want to stop fundraising. But we can't.

Til every kid gets to grow up.

Til every parent gets peace.

Til every family is safe.

Til there's a cure.

Please consider donating. Our donations have lagged but the diagnosing hasn't. Let's change the story. https://www.alexslemonade.org/mypage/1261673

September 20: Back to School

After 2 years of hospitals, clinics, and Ronald McDonald House playrooms, Tillery is starting school! Even though she’s on weekly chemo, her immune system has held strong and she’s healthy enough to be around other kids in a childcare environment. AND, we went through testing with the school system and Tillery qualifies for NO special services. She’s enrolled in a normal developing early PreK program and other than a few exceptions on the staircase and playground, Tillery will not require any different treatment than her peers!

As proud as Mommy and Daddy are about this moment, Tillery is definitely the most excited! She loves friends and playing and has been so anxious to get out on the school playground. She also picked out a backpack for school and is telling everyone about it!

Today is a day we have dreamed about. Nights on the plastic blue couch in the hospital and days spent in the oncology clinic, we would let our minds wonder what the future would be like. Would Tillery ever be able to fit in with kids her own age? Would she be able to catch up and keep up? Today, it’s happening. We dropped her off and set her loose on a new adventure and she will do it independent of us.

Being a normal kid. It’s every oncology parent’s dream and we are thrilled to be living it.

Not today, cancer. Today, she’s just a kid.

Update: Three hours after this post, the school nurse called. Tillery fell on the playground and hit her head and it was bleeding. After consulting her neurosurgery team in Cincinnati, it was decided to take Tillery to the ER for a head CT to make sure everything was ok. Everything was fine but this is just another example of how hard it is for a child with cancer (or any illness) to fit in with her peers. She will always be a little bit different.

September 19: Stand Up!

I hate to get political on a Monday morning, but we need your voice to reach out to Congress right now! The STAR Act, the most comprehensive childhood cancer bill ever, has enough support to be taken to Congress but they are only in session for a few more weeks. They are only able to spend time on the most pressing issues and, as continues to be the case, saving children doesn’t rank high on many people’s lists of importance.

THIS IS WHERE YOU COME IN!!

The below link makes contacting your representatives super easy! Click the button at the bottom of the page to “Email Your Representatives” and in just a few easy steps, a prewritten letter will be sent to your representative in Congress.

https://www.stbaldricks.org/blog/post/a-big-star-act-update-and-a-big-deadline

Y’all know I’m passionate about this. My daughter needs a voice at the table deciding how to allocate research funds and how to study childhood cancer. The STAR Act will put a pediatric oncologist on the NCI board so that kids have an advocate. I’m not asking for the whole pie, just a bigger piece.

While we wait on #morethan4, donate your private funds to help the kids: https://www.alexslemonade.org/mypage/1261673

September 18: Moving Mountains

We share a lot. Some days, you might not want to see our posts. Sometimes they are hard and sometimes they are sad. Sometimes you just wanna watch some pet videos and laugh at some memes. But the reason we share it all is so we can share it all. See, you can go through our darkest valleys with us and then rejoice with us in the victories.

God has allowed a mountain in our lives called cancer. He didn’t put the mountain there to teach us a lesson, but He allowed it to be there and is using it and us. He has walked with us and carried us every step of this journey and we can look back over the 2 years and even the years before and see how we were prepared and led. We are not blessed because our child is still with us, we are blessed because He gave His child for us. Jesus washed our sins away so that we may all experience eternal life in Heaven. It is the promise of eternal life that is a blessing to each of us as it reminds us that our time here is very short and finite and what we experience on the other side is infinite.

Childhood cancer is a bully that takes children from this Earth far too soon. There is comfort in the words “Eternal Life” that remind us all that those children, the 1 in 5 who do not survive, are in Heaven waiting for the rest of us. God has already cured cancer. Every time another child leaves this world and moves into life eternal, they are cured. We believe this fully.

We also believe, for the mamas and daddies who can’t hold their children anymore, the pain they feel is real. We believe that there will be a cure in this world that will allow these children to grow up and do big things for the Kingdom of God. We are asking the government for more, we are asking the medical community for more, and we are asking you for more. We are using our story to inspire, motivate, and encourage. If we all do a little, something big can happen.

Help us do something big. https://www.alexslemonade.org/mypage/1261673

September 17: Selling Lemonade, Running Miles, and Saving Lives

As an oncology parent, you do a lot of waiting and worrying. We have our fair share of "hands on" by assisting with holding our children down during scary or painful procedures, learning home care, administering medications, and memorizing the full medical chart to rattle off to every new provider we meet. Other than that, there is a... lot of sitting on the side lines and watching things happen to your child and wishing you could change them.

Once you get through the critical times (and sometimes even during), parents take on a new role of Childhood Cancer Champion. We fight for our child and every other child we meet in the hospital and oncology clinic. As we go through treatments with our child, we wish there was a better way, an easier treatment, something to save them. When we learn there is none and that research is almost exclusively funded by families with sick children, we start looking for ways to get involved.

To prevent the flu, we get flu shots. If we suffer from seasonal allergies, we pick up some over the counter medications at the nearest drugstore. When we get a stomach bug, we lay around and moan for 24 hours while we wait for it to pass. But when a child gets cancer, their parents have to get creative with fundraising and make some noise to raise awareness to try to save them.

Our family has sold lemonade, popcorn, t-shirts, and crafts, we have run 5k's , we've counted stitches and counted miles, and we are always looking for the next thing to do to try to save our daughter and her friends. This month, Tillery's mom and dad are each running/walking 100 miles for awareness and her 5-year-old brother is walking 5 miles. Today, we are participating in a Move-a-thon, where we will run, walk, bike, and tricycle around a church parking lot for pledge donations to cancer research.

Our daughter deserves better options than lemonade sales and her parents running abilities. She needs a cure and for that she needs YOU!

Here is our donation link for September. You can donate any amount and it will all add up. If you'd like to make a per lap pledge for our move-a-thon today, let us know. You can even sponsor Tillery who will be walking in circles on legs that have only been moving for 153 days. Today, she's walking to save her friends.
https://www.alexslemonade.org/mypage/1261673

September 16: Survival

As a parent, you have so many questions that swirl in your head when your child is diagnosed with cancer. The scariest is the one you are too afraid to ask...Will my child die?

It took 5 weeks to get Tillery's pathology back and for those 5 weeks, we did not know if she would survive. After the tumor biopsy was taken, the neurosurgeon told us that much of the tumor looked slow growing and was not too concerning BUT there were parts that appeared highly aggressive. He could not answer any questions until we had the pathology back to know for sure.

Tillery's tumor falls into a category of brain tumors called "low grade gliomas". They are not very aggressive and non life threatening. (Although yesterday's video showed you that when your child is medically fragile, critical issues can arise as a result of treatment.)

1 in 5 children with cancer will not survive. Tillery is one of the other 4. It is our prayer that she remains there.

Help us #endchildhoodcancer by making a donation to Alex’s Million Miles here: https://www.alexslemonade.org/mypage/1261673

September 15: The Helmet Months

Perhaps the hardest part of this entire journey has been the time that Tillery was in a helmet. That helmet was a constant visual reminder of a horrible night when we thought we would lose our daughter. Through the helmet months, and many times since, the song Holy Spirit has been in my heart and on my lips as a constant invitation for the Holy Spirit to flood our lives and Tillery’s path.

Here’s a slideshow of the hardest moments of our lives. Without God’s comfort, the love of Jesus, and the Holy Spirit’s presence, we could not have survived this dark time.

WATCH VIDEO HERE.

Tillery developed a blood clot as a result of her tumor surgery, which caused her to need blood thinning medication. The blood thinner she was on is one that typically isn’t used on children and there was no research on how to reverse its effect in an emergency like Tillery faced. The anesthesia team who saved her life that day wrote a journal article about her. This is another reason we need funding for child specific medications. https://www.alexslemonade.org/mypage/1261673

(When making a donation, you can choose a type of cancer to allocate your funds to. We request choosing brain tumors to directly impact our girl.)

September 14: Not Rare

Why do we still call it "rare"?

September 13: Timothy, Childhood Cancer Survivor

When you talk to people about cancer, they often ask about if doctors are able to “get it all” or if you are “in remission”. These are phrases that give people hope and help them to feel better about the horrible story of cancer.

Today, we want to introduce you to a childhood cancer survivor. We met Timothy at just the right time in our journey. Tillery had been through her share of hiccups and we met Timothy and his mamas in the kitchen at the Ronald McDonald House while his younger sister was a patient at Cincinnati Children’s. He was the best big brother Khloe could have had because he knew far too much about hospital life. Tillery was separated from her brother, Luke, and Timothy was separated from Khloe so the two of them adopted each other as siblings and quickly formed a bond. Tillery was in a helmet when we met Timothy and he still affectionately refers to her as “Baby Hat”.

Timothy was diagnosed as a baby with a stage three, 5 cm, hepatoblastoma tumor in his liver. It was mean and aggressive and it was quickly determined that tumor was going to fight with all it had. But that tumor had obviously never met Timothy! Timothy’s body was flooded with poison and drugs to kill that evil mass and the treatments were successful and Timothy’s parents were able to take their sweet boy home with them. He fought and he won!

Today, Timothy is 5 years in remission, a phrase so many long to hear. That said, to save his life came at a heavy cost. Read the below “short list” from Timothy’s Mommy of issues, medications, and therapies that remain as a lasting reminder of Timothy’s cancer battle.

Issues Timothy has as a result of cancer and cancer treatment: low bone density, permanent GJ feeding tube, repeated revaccination, enema dependence, loss of the function of his entire GI system, permanent hearing loss and hearing aids, and separation anxiety. Meds: liquids through feeding tube 5 times daily and at least 2 breathing treatments daily totaling 30+ doses of medication daily. Therapies: OT weekly for years, PT weekly until last summer, Speech therapy every other week with daily home practice for 20-30 minutes.

THIS IS A CHILDHOOD CANCER SUCCESS STORY!

Don’t we owe our kids a better success story? After they fight for their lives, they shouldn’t have to face these harsh, lasting side effects. They deserve #morethan4 to find ways to cure their cancer without so much damage to their bodies.

All that said, Timothy’s Mommy has this wonderful perspective: “For what it's worth, all that crud above also seems to have the side effect of creating the most empathetic, kind, sensitive little boy I could imagine. With a heavy side of wild, mess making, everyday kid thrown into the mix.”

We love Timothy and we are so thankful he fought so hard 5 years ago so that we can have his friendship now.

(Side note: Timothy’s little sister, Khloe passed away in the Spring. Aside from all that he has experienced in his own story, he also walked alongside his sister on her own battle with illness. Khloe was an amazing girl and we are so thankful to have known both her and Timothy. To see the two of them together was to see pure joy. These two amazing kids have been supported by amazing and loving mamas who have fought just as hard as their children. It’s been a long road for them all

Donate to Alex’s Lemonade Stand to fund research to find less harsh side effects for these kids https://www.alexslemonade.org/mypage/1261673

September 12: No Slacking Off

Alright friends, it’s time for some honesty…we’ve been slacking off! (Well, Joe ran a half marathon this weekend but the rest of us have been slacking!) This weekend, I got busy with other things and didn’t log my miles like I need to do to hit my goal. Our fundraising has also hit a wall. But you know what isn’t slacking off? Childhood cancer!

Tillery is going to end chemotherapy at the end of this year. She will have a surgery early next year ...and then she will have no further treatment planned. She will have MRI scans done every 3 months and if her tumor remains stable, she will be able to remain off of treatment and will be allowed to be a “normal” kid.

BUT, here’s the reality…She has been on chemotherapy for almost 2 years. She has also taken quite the cocktail of home medications. While she has experienced mild side effects from her chemotherapy, the long term side effects are unknown to us. Having so much poison put into her little body at such a young age will almost certainly cause issues that we will learn as she grows up.

95% of childhood cancer patients will suffer from a Chronic Health Condition by age 45.

Unacceptable! Ridiculous! Disappointing! Heartbreaking! Unfair! No, No, No!!

THIS is why childhood cancer deserves #morethan4! Today’s childhood cancer patients are tomorrow’s cardiac patients, pulmonary patients, GI patients, fertility patients, and sadly, oncology patients, again.

Donate to our fundraising efforts to help end childhood cancer or at the very least, make the side effects milder. https://www.alexslemonade.org/mypage/1261673

(When making a donation, you can choose a type of cancer to allocate your funds to. We request choosing brain tumors to directly impact our girl.)

September 11: Calling 911

The date is 9/11, so I thought I’d take a moment to talk about 911.

The first time we called 911, Tillery fell off a bed at the Ronald McDonald House and had a massive bleed in her brain. She almost immediately lost consciousness and Joe ran to the lobby of the house and had them call 911. (The protocol at RMH is to call 911 from your room phone and they will know exactly where in the house you are from the number but when your child goes limp in your arms, you totally forget all rules and protocols.) Local firefighters were the closest emergency responders and took Tillery and Joe across to the hospital and straight to the trauma bay. Tillery had a seizure on the way in the arms of a fireman.

The second time we called 911 was on Valentine’s Day 2015. We had come home from Cincinnati for 10 whole days after being away from home for over 4 months. Tillery had just had her skull bone stitched back in place and was playing in the kitchen. She pulled herself up on her knees, which was a new skill she had learned, and lost her balance. She fell backwards and hit her head hard on the linoleum floor. I was home alone with both kids while Joe was having our van serviced. I called 911 and the emergency responders came and looked her over and felt she was okay but offered that they could take us to the ER if that would make me more comfortable. After the emotional nightmare we had been experiencing and having just had a major surgery on her skull, I absolutely let them take us over for a safety CT. Wonderful neighbor friends, Rick and Sarah, came and stayed with Luke while Tillery and I took a ride to the hospital.

The third time we called 911, was last summer. Tillery had been experiencing anxiety during port access for chemotherapy after having a few painful experiences in the ER. To calm her nerves, we had started giving her some anxiety medicine on chemotherapy days. That morning, as I measured out her medicines, I got the dosing crossed on her anxiety medicine and another medicine and ended up giving her a massive amount. Tillery became a ragdoll and her eyes were really droopy. Even though I knew the mistake, I feared what that overdosage of anxiety medicine would do mixed with all the other meds she was taking. Since the EMS that came to the house were not familiar with many of the 12 medicines she was on, we decided it was best to head to the emergency room and have her observed while the medicine was wearing off.

Three times we have called 911. So many other times we have discussed calling 911. Every time she falls down, I glance at a clock and time how long it takes her to calm down. Every time she says her head hurts or comes to us crying and we can’t understand why, we reach for a phone. We live on pins and needles.

Of the 3 times we have called 911, only one was an actual life or death emergency. The other two times, we weren’t sure but we were surely scared. When your child has cancer, you often jump to worst case assumptions. Let’s be honest, before our child was diagnosed with cancer, that was the worst case and it came true.

Help us #endchildhoodcancer by making a donation to Alex’s Million Miles here.

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

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.