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.