End of Year Updates and Beginning of Year Plans

557 days

That's how long it has been since the last time we saw tumor growth. On June 16, 2015, after 2 monthly doses of Carboplatin, the chemo we planned to use to stabilize Tillery's tumor, an MRI showed growth instead of stability. It hit us hard and unexpectedly. We had been going through 8 months of hiccups and hurdles and we were just exhausted. We wanted SOMETHING to go right and yet, there we were, another hiccup, another hurdle.

Since then, we found a new chemotherapy that did it's job. Tillery did 52 weekly doses of Vinblastine (with more hiccups and hurdles mixed in but at least the chemo was working). We ended chemo on December 5th, just a few weeks ago. It was an anticlimactic end to chemo, as we didn't realize it was the last dose of chemo until after the appointment so the day went by the same as any other chemo day.

I was a little bummed that we didn't do the end of chemo party. There wasn't a cake and there was no picture of Tillery holding a sign that said "Last Dose of Chemo". I wanted to have that celebration that so many of our other oncology friends have had. But really, when we thought about it, it wasn't our time for a party. We knew another surgery was looming. We knew that a mass still resided in her head. We knew that it was possible that we would need to resume chemo in the future. We weren't yet at a time for celebration.

So the plan was to travel to Cincinnati on January 26th for another MRI and to meet with neurosurgery to plan for and schedule surgery. If you've followed Tillery's story for long, you know, we NEVER follow the plan.

Friday, December 23, Tillery had a fall in our kitchen and hit her head. She couldn't calm down so we went to the ER to have her examined. The concern when she falls and hits her head is always her shunt, so that's what we were looking for on an x-ray. All looked good and we were sent home. We were told if she had any signs of shunt malfunction in the next few days to return for a CT scan.

Sunday, December 25, Christmas morning, Tillery woke up vomiting. She wasn't acting like she had a stomach bug. It was a strange, unexplained vomiting. It reminded us of the time she had shunt troubles so we decided to take her to the ER again for a CT scan. Again, they were focused on her shunt and it looked fine on the scan so we were sent home for presents, food, and family.

Monday, December 26, the follow up nurse from the ER called. She said that a full radiology report had been written about Tillery's CT scan and while the shunt and bone flap both looked fine, the scan showed slight tumor growth in the solid portion of her tumor. She started reading off measurements but I couldn't focus on her words anymore. My brain had moved on to next steps. We needed to get that scan to Tillery's neurosurgery team in Cincinnati. They needed to compare it to their latest scan and determine if there really is growth. I decided right then to assume that our local hospital must have something wrong and they just needed to step aside and send that scan on to the experts. We haven't had any bad experiences at East Tennessee Children's but in that moment, I needed this to be wrong!

A few issues:

• It was the day after Christmas, which was being taken as a holiday day at all of our clinic offices. Getting an on call team involved seemed unnecessary so we would have to wait until regular office hours.

• It was the week after Christmas, when many people were out of the office or taking it easy. It was going to be difficult to get communication flowing with missing team members and even harder to get a plan.

• HIPPA rules that are supposed to protect patients also make things harder. Getting a CT scan from one hospital to another is not as easy as today's technology would lead you to assume. It took 2 days to get the scans from one team to another.

So, it was Thursday before I received a phone call back from Cincinnati Children's neurosurgery. (I should note that I spoke with them multiple times each day in between but it was that long before we got a phone call with news.) Our surgeon received the CT from Tennessee and compared it to the scan from November. There was indeed growth.

Thursday night, we sent an email to our full team: CCHMC Neurosurgery,  CCHMC Oncology, and ETCH Oncology. The email detailed our concerns and our desire to move up the MRI date.

Yesterday, we got our plan for next week. We will travel to Cincinnati on Monday evening for an MRI on Tuesday. Wednesday, we will have a free day and try to do some fun, family things in Cincinnati, turning another Cincinnati trip into a "vacation". While we are off enjoying family time, our neuro and oncology teams will be meeting to discuss options for us. Thursday, we will meet with our teams to determine our plan of attack.

This is hard news but we've been here before. In fact, during the past 2+ years, we've spent more time revising plans that actually staying on plan. Our story is one of emergencies, unexpected outcomes, and road blocks. That said, each time, we've gotten through. During the time that we have dealt with so many hard times, we've also experienced some amazing things.

In the last year:

• Tillery learned to walk.
• Tillery started eating and drinking by mouth.
• Tillery started a school program that she loves.
• Tillery has only had one hospital stay and it was planned.
• Our family took our first family vacation that did not revolve around a hospital trip.
• We raised over $11,000 for pediatric brain tumor research and held 2 more blood drives.
• And, even if it's short lived, Tillery ended chemotherapy.

We look forward to seeing what 2017 brings. We focus on the hope we have for Tillery's future. We continue to feel God's presence and see Him working in our lives. We know that Tillery is a special child who is touching lives and we are blessed to be the family who gets to love her. Thank you for loving her with us.

Fruitcake Day

Hello, me again.

12 days ago, I wrote a post about how we were done with chemotherapy and we had no more appointments for 6 weeks. I knew when I wrote it, it was all a bunch of baloney! Tillery hasn't followed medical plans ever, so why start now?

So here we are, two days before Christmas, writing a post about an ambulance ride...

This morning was great. We slept later than normal (this is our first full day out of school for Christmas break) and eased our way into the day. Luke ran out to get the paper this morning and discovered that we had missed getting our mail yesterday and in it was a package from a friend. Inside was a small fruitcake with her recipe. We all sampled it and decided we should give fruitcake a chance and that was our goal for the day...tackle fruitcake baking!

A little before noon, I was heating frozen pizzas while making my grocery list, the kids were at the kitchen table playing with dominos, and Joe was in the shower. As I was taking a pizza out of the oven, I heard Tillery's head hit the linoleum floor behind me and immediately knew what happened. She had been sitting in a chair that isn't her normal chair with a booster in it. She was probably reaching across for something on the table and lost her balance and fell. As soon as I heard it, she started shrieking.

I took her into the living room and sat in the chair with her to start doing my own neuro checks I have become accustomed to doing: check all incision areas, feel around the shunt, feel around the bone flap, look at her pupils, look for redness or swelling anywhere, see if she can calm down. Joe heard the screaming and crying and came running out from the bathroom to check on things. I told him I thought we would be ok, we just needed to wait for her to calm down. He went back to the shower and I tried talking to her about other things, trying to make her laugh, trying to distract her. She kept crying. Her eyes were droopy and she kept trying to close them. I knew she hit hard and I didn't want her to fall asleep so I was trying to soothe her without letting her drift off. But she kept crying and closing her eyes. It was like her eyelids were too heavy for her.

I remembered it was during normal business hours so I called the oncology clinic to ask if I should bring her in to get looked at. The lady who answered the phone put me on hold to get a nurse for me. Then, Joe came out of the shower and saw that she was still just as upset as when he saw her a few minutes earlier. I told him I was on hold with the clinic and he said, "Hang up and just call 911.".

Remember, we've done this. She's had falls and we've been in the trauma bay about to lose her. She's gotten bleeds in her brain. She's had her shunt malfunction. She's ridden in ambulances and had to be airlifted. We don't take chances.

So I hung up and called 911. I told them that she had a fall and said, "She has a brain tumor, hydrocephalus, a VP shunt, and a recently placed synthetic bone flap." They said, "An ambulance is on its way to take you to Children's."

While I was on the phone with 911, Joe was trying to get Tillery to follow his finger with her eyes. She couldn't/wouldn't. She was saying the front of her head was hurting right between her eyes. With a shunt, you always fear the pressure that can build in their brain if it stops functioning.

I called a friend and tried to play it cool, "Hey, are you really busy or do you think maybe Luke could come by for a visit....An ambulance is coming for Tillery and we were wondering if Luke could hang with you." (Thank God for the Williamses and the Vaughns who have had to answer this call for us too many times!)

We went to East Tennessee Children's and things were pretty routine. Tillery had calmed a lot by the time we got in the ambulance and the ride distracted her from her head pain. She played her favorite car games (I spy something green...which is never anything green, and I see a flag!). In the ER, they did neurological checks on her and she checked out fine. We decided that rather than do a CT scan and expose her to more radiation, we would do a series of x-rays to look at her head and shunt and make sure there was nothing obviously wrong. The shunt series looked fine so we were released to come home. We will continue to watch her for signs of shunt troubles over the next few days but for now, she seems fine.

 

Tonight, we got back on track with our plans. Luke and Joe had a game night while Tillery and I got to work in the kitchen. We made the fruitcakes we planned to make earlier today. Some days don't go as planned and sometimes some really yucky stuff happens. If you don't let it knock you down, at the end of the day, you can still have your fruitcake.

Merry Christmas, everyone! Here's hoping for no more updates from us until the new year!

Tomorrow

Tomorrow, I will pick Tillery up from school and bring her home.

I will not put numbing cream on her chest under a layer of Glad Press 'n Seal.

I will not have a conversation with the parking attendant at the hospital who is always a smiling face, even on hard days.

Tillery will not ask the lady at registration for a princess sticker for her hospital wristband.

She will not have her vitals taken and I will not review her medications list with the nurse to confirm date and time of last given doses.

Tillery won't pace around the nurses station looking for the "iPad lady" to invite her to come to our room.

We won't see any nurses, doctors, social workers, or chaplains.

Tomorrow, Tillery will not be given chemotherapy.

Next week is Tillery's first appointment free week since diagnosis day, September 30, 2014. Tillery doesn't have another scheduled appointment for 6 weeks. This is the beginning of a new phase for us. While it sounds nice and almost like normal, here is a glimpse of our future...

We are anticipating another major brain surgery in early 2017. This surgery will be lengthy and will involve a long list of risks and possible side effects. We cannot predict what recovery from that surgery will look like or how long our stay in Cincinnati might be following it. We know that Tillery's tumor cannot fully be removed but debulking as much as possible is very important, especially if later growth occurs.

After surgery (probably in February), we will return to Cincinnati quarterly for MRI scans of her brain. With each scan, we will hold our breath and pray for stability. As we see stable scans, we will thank God and then begin holding our breath as we wait for the next quarterly scan. If growth is found, we regroup with the team to discuss options. The chemotherapy drug she has been on since last July is our first course of action, but we know that it does not shrink or kill tumor cells. Other chemotherapy options exist but have scarier long term side effects or unknown side effects. Radiation has been discussed for much later in her future.

For awhile, Tillery will still have a port in her chest. Because a port must be surgically removed and replaced, we won't remove it until we are much farther out from treatment. As long as Tillery has the port, she's at a higher risk for a bloodstream infection. This means that anytime she has a low grade fever (anything above 100.5), we must go to the hospital and have blood taken and tested. As long as she has the port, minor illnesses will be treated as major.

Because Tillery has a shunt, which she requires to drain excess fluid off of her brain, anytime she has a hard hit to the head or has vomiting, we must take her in to the hospital for a CT scan. Shunt malfunction and infections are common and require almost immediate surgery and sometimes lengthy hospital stays.

Most people end chemotherapy and celebrate with a party. For most, ending treatment means "remission", "healing", or "survivorship". For Tillery, ending chemotherapy means a break from the hospital. It means no more weekly pokes. It means transitioning out of this first phase of being "in treatment" and moves her into "living with cancer".  "Remission" is not a possibility with our current medical options. We hope to change that with medical research and advancements.

So we aren't out of the woods yet. Tillery's story will be ongoing. But for now, for tomorrow, we are on a break from chemo and we are thankful.

Help us celebrate Tillery's first free Monday afternoon by making a donation to pediatric brain tumor research. Your donation can help us find a cure. Together, we can change the outcome. Donate here to the TIL Fund.

Donate $64 for the 64 doses of chemotherapy she has had.
Donate $26 for the 26 months she has been a cancer patient.
Donate $9 for the 9 kids who will be diagnosed with a brain tumor tomorrow.
All donations are appreciated and helpful. Together, we can make a difference!

Doing Something Big Through Something Small

Some days, Timehop is a jerk. Sometimes the memories from this day in the past take your breath and cause you to take pause. Some days, you wish you could forget.

Two years ago today was the hardest day of our journey. This is the anniversary of the day we almost lost our daughter.

If you have followed our story for long, you have heard about this day many times. It haunts our memories and we reference it often. For those who don't know the story, here's the abridged version:

Tillery had a major brain surgery to debulk her tumor on October 2, 2014 that had her in the operating room for 15 hours. As a result of this lengthy but life saving surgery, Tillery developed a large blood clot in her brain and had to go on a blood thinning medication. On November 15, 2014, Tillery fell off the bed at the Ronald McDonald House and hit her head on the hardwood floor. The fall that would have caused discomfort and possible bruising for any other kid, caused a massive brain bleed for Tillery. She was rushed to the ER and into the trauma bay where she remained for hours. She was given an endless supply of blood products to thicken her blood and was covered in a variety of monitors to see how her body was responding. We were told that surgery was not an option at that time because of the blood thinners but she would need surgery soon to relieve the swelling and drain the bleed. As time went on, the story changed...Tillery's pupils became different sizes and she stopped moving her left side. The surgeons believe that if we waited much longer, she would have permanent brain damage. Surgery needed to happen immediately, even though the risk of bleeding out was high and chance of survival was low. As they took her to the operating room, we were unsure if we would see our child again.

That night was a nightmare. It is something I still see vividly when I close my eyes. I remember faces and actions from that night. I remember the bright lights in the trauma bay and the crowd that surrounded Tillery. I remember being asked to step out of the room and watching from the hallway at times when she was screaming and even more terrifying, when she was silent.

I want to share 2 stories from that night with you. They were the stories of hope. They were the people who stepped up and did something huge with a very small action.

The first story is of the OR nurse. She came to me soon after we arrived and she told me that she would be the nurse in the operating room whenever they felt it was time to take Tillery there. She took my hands in her hands and looked me in the eye and said, "I have a granddaughter who shares Tillery's birthday. When I saw it on her chart, I knew she was special." She let go of my hand to turn her name badge over and show me a picture of a smiling child taped to the back of her badge. She told me that she would be taking extra care that Tillery had all she needed and was safe. As Tillery was in surgery that night, I had took comfort in knowing she had someone who had found an emotional connection with her in the room.

Then there was Josh. Josh was a neurosurgery resident who we had met when we first arrived in Cincinnati. The residents are usually more visible to families than the attending surgeon so we had talked with Josh often. He always wore green scrubs and a lanyard with his name badge that was decorated for University of Miami (in Florida). We had seen him many early mornings and late nights. In the hustle and bustle of the trauma bay that night 2 years ago, he was the only familiar face. He was not a particularly smiley guy and was always just straightforward. When the anesthesiologist had explained to us all of the risks of surgery (and there were so, so many), they emphasized the risk of bleeding and the possibility of her not surviving. Josh came to me and looked me in the eye. He said, "I've been in the OR for all of her previous surgeries and I will be in there again today. I will bring your daughter back to you."

Tillery's life was saved that night by Dr. Francesco Mangano, who drained the bleeding, removed her right bone flap to allow for swelling, and put in a drain to continue to relieve bleeding and fluid. Her life was saved by an anesthesiology team that had to go to such lengths to reverse the thinned blood and keep her safe that they had us sign consent for them to write a medical journal article about it. She was saved by a host of doctors, nurses, and support staff who worked feverishly in the trauma bay, operating room, PICU, and neurosurgery floor for weeks to get her back to a safe place that allowed her to leave the hospital right before Thanksgiving.

I will forever remember the details of that night. Mixed in with all the horrors, the bright and shining beacons of hope that were seen through the OR nurse and Josh the resident are also very vivid.

It's amazing how much hope can be found in having someone who really sees you. I challenge you to find ways to show people, even strangers, that you see them and you care. You can do big things through small actions.

As always, thanks for loving Tillery and seeing our family. Your support helps heal our brokenness.

This was Tillery 2 years ago today.

These pictures are from the oncology clinic yesterday, as Tillery was taking her baby's "pressure".

2nd Annual Trot for Tillery 5k

It always makes you feel good to be a part of something good. Donating to a cause you support or coming together to show love to others does your heart good. This weekend, we were on the receiving end of these blessings.

Last year, when my cousin Sheyvon pitched the idea of having a 5k in Tillery's honor, we thought it sounded awesome but didn't think we needed the financial support. At the time, we were home from Cincinnati and done with what we considered to be the "scary part". We decided to go forward with it with plans to donate excess to another charity we support. Instead, 6 weeks before the first Trot for Tillery, Tillery was diagnosed with a fungal infection in her brain and abdomen and was airlifted to Cincinnati to endure 5 unplanned surgeries and 8 solid weeks of bedrest. By the time the 5k was held, we had spent much of our reserves on hospital food and travel expenses.

The first Trot for Tillery was so successful, my cousins immediately began work on the 2nd annual Trot. Again, Joe and I had plans to hopefully pay it forward as we found ourselves "doing well". In August, I started back to work part time and on my first day of work, our truck broke down and we were forced to purchase another vehicle. While we had hoped my part time job would help us get a little financial footing, we resigned ourselves to a car payment and hoped the upcoming Trot would be able to see us through Tillery's next surgery. Three days before the 2nd Trot for Tillery, our van went into the shop needing major repairs. A huge expense we had no way of paying. We left the van with the mechanic and headed to Alabama knowing that the support of family would boost our spirits once we got there.

Saturday was a beautiful day in Sylacauga, AL. Blue sky, slight breeze, and beautiful view of the lake. The crowd of over 50 runners and walkers gathered in the parking lot of Russell Chapel Baptist Church and our family split up greeting people and personally thanking as many of them as we could. Tillery even ran around chatting with family and friends.

Sheyvon thanked everyone for coming and gave us an opportunity to speak as well. But what do you say to a group like this? These people had lifted our family in prayer for 2 years. They had sent cards and care packages to Cincinnati, they had shared Facebook and blog posts, and now here they were right in front of us about to run 3.1 miles just to show their love and support for our little girl. Thank you wasn't enough but it was all I had in me.

At the end of the run, Sheyvon gave an initial fundraising total of over $8,000. By the end of the day, the number had grown higher and even now, it continues to grow. The repairs on our van are covered. Some car payments are covered. Our travel for the next surgery is covered. Our family can breathe.

To all who helped, to all who came, to all who donated, THANK YOU. Our family has again been blessed. As we say often, Tillery is Loved.

Click here for a slideshow of photos from the Trot for Tillery!

The link for donations is still open until 11/20/16. Click here to donate.

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.