Funding a Cure

As promised, we are kicking off a big year of fundraising efforts! We are determined to fund vital research that will allow for less harsh drugs, better outcomes, and an ultimate cure.

If you haven't heard already, we are partnered with Alex's Lemonade Stand Foundation. They have set up this TIL Fund with all funds raised going to pediatric brain tumor research. You can make a donation directly from the page or wait on fundraisers through the year that speak to you.

Our first fundraiser of the year is with Park Lane Jewelry. Using this link to shop, you can help us fund pediatric brain tumor research. 50% of sales will be donated back to the TIL Fund! The fundraiser will run through February 13th which is 43 days into 2017. The number 43 represents the 43 children diagnosed every day in the US with childhood cancer. Our fundraising goal is $387 because by 2/13, 387 kids will have been diagnosed in 2017 with a brain tumor.

Upcoming: We have 2 big things we are working on for May (Brain Tumor Awareness Month).

The first is a partnership with churches who have diligently prayed for our family. We are having a Go Gray Sunday on May 7th. We encourage church attendees to wear gray that day and will have some special announcements, bulletin inserts, and fundraising ideas available for churches to join us to raise awareness and research funding. To sign up your church, contact Alana at 423-827-2804 or hope@tilleryisloved.com.

The second May event is a 5k that will be held May 20 at Victor Ashe Park in Knoxville. Over the next few weeks, we hope to have an online registration page up and will share further details when we have them. If you know of a business who would like to sponsor our 5k, please have them contact Alana at 423-827-2804 or hope@tilleryisloved.com.


Later in the year, we will be holding lemonade stands and will encourage you to hold your own stand to support Tillery and others like her. We will also participate in the Alex's Journey to a Million Miles event in September again, logging miles, raising awareness, and raising money for childhood cancer.

Let us know if you have a fundraising idea or would like to hold an event for us. We are able to set up online fundraising pages for groups who are interested in helping us with our mission.

Thank you for helping us raise almost $15,000 so far! Our goal is to raise $100,000 by spring 2020 and we are confident we can make it happen!

We Wanna Be Like Jack!

I want to tell you about our friend, Jack.

Two years ago, Jack and Tillery were among the healthiest children at the Ronald McDonald House. Our families bonded over this strange statement. With our friends and family, our children were in the most dire condition but in a house full of children who had travelled hundreds or thousands of miles due to their serious medical conditions, we were the healthy ones. Some days, the guilt of that statement was too heavy. To watch our friends lose children while ours were busy playing together or making crafts made us feel like we didn't belong in this house. Other days, the fear and reality of our children's illnesses felt fresh and we knew that these were the only people who could ever truly understand us.

When I met Jack, he had chipmunk cheeks and a smooth bald head. His laugh was more of a high pitched squeal and whenever he saw me, he would shout, "Miss A-Wee-Na!!". Jack wore a mask often or sat in his covered stroller because his body could not handle being exposed to any "germies". Jack was one of the first people to call Tillery by the nickname Til and it sounded more like "teal". Jack was a special friend for us to have because he is the exact same age as Luke and they had similar interests so during the long gaps of missing seeing Luke, it helped to have Jack to hang out with us.

Today, Jack has a slender face and a head full of curly, red hair. He's gotten older and he's not the little squealy guy we knew then. Now, he takes karate and is completely fearless. He goes to school instead of the hospital and he blends in with his peers. After spending most of his baby and toddler years in and out of hospitals, on a large number of medications, requiring multiple therapies and treatments, and overall looking and being different, now Jack is just a normal kid.

This normalcy can be traced back to a medical decision his parents made. A little over 2 years ago, doctors sat down with his parents and explained a procedure that could make Jack healthier and improve and extend his life. Those things sound awesome to a parent of a sick child and you would think the decision to go through with the procedure would be an easy one to make...until you hear the other side. About half of the kids that go through the procedure do not survive it. Jack had to undergo some heavy chemotherapy and then have a bone marrow transplant. He was in the hospital for about a month but had to stay within a short radius of the hospital for 100 days following the transplant. His mom had to quit her job to be with him and they both had to miss his dad who had to stay home to keep income and insurance coming in. The medicine, the procedure, and the toll on the family of being separated were hard but today, their family is together and Jack is a healthier child because of it.

Jack is the success story many of us in the Ronald McDonald House family cling to because so many of our friends fell into the other half. Many of the families we know who had children who had a bone marrow transplant left Cincinnati without their children. Those families had the same decision in front of them and they made the same decision that Jack's parents made but their outcome was not the same.

The reason I'm telling you about Jack is because right now, we also have a medical decision to make. Over the past week, I've spent a lot of time thinking of the families we know who made a decision and then lost their children or had children who suffered medically. Their parents didn't make the wrong decision because medically, there was no right or wrong. If there was, the doctors would have advised differently. This happens a lot for parents of sick children. Doctors give information and ultimately the choice is the parent's choice to make. You never know what you would decide until you are in that position. You can't imagine looking at the possibilities and risks and side effects of both sides of scary medical procedures and making a decision, choosing the lesser of evils sometimes in order to give your child a fighting chance.

Last night, my mind was on Jack. The kid is amazing. I look at him and how far he has come and I want every bit of it for Tillery. In a lot of ways Tillery is already right where he is. The only difference is, we still have this next decision to make.

Major brain surgery: Now or Later?

We have been given the pros and cons of either decision. Our medical team says there is no right or wrong answer.

So we look at our child who is "healthy" and thriving. She's dancing and learning to hop with both feet off the ground. She is learning to write the letter "t" and working on saying her alphabet and counting. Her hair is growing out and she's blending in pretty well with her peers. Do we take this child to the operating room for the 14th time, this time for another major brain surgery? We know that the last surgery of this scope resulted in a blood clot in her brain that threatened her life. We know that, while our surgeon will be very cautious, any surgery, especially in the brain, has a long list of risks that are potentially life altering. Do we risk all of those things now?

Or do we wait? We will have quarterly scans to measure the tumor. If we see growth, we know we can go in at that time for surgery. What we don't know is, will it be too late?

We are so thankful for how wonderfully Tillery is doing. We are grateful for your prayers and support. We ask for continued prayers, not just for this decision but for future decisions we will face as we live life as a family with a brain tumor diagnosis. We ask for prayers for so many others who face decisions like this with their children. We ask for prayers for those who mourn the loss of a child and put blame on themselves. We ask for prayers for the children who survived, that they will continue to live life to the fullest.  Finally, we ask for prayers for all those who have not yet faced a childhood illness but one day will.

March 2015

January 2016

May 2016

Cheers to a Stable New Year!

Well, we made our first Cincinnati trip of 2017 on January 2nd and all 4 of us went. We were prepared for hard news and immediate plans to jump back into treatment. Instead, we were given good news and no plans, yippee!

On January 3, Tillery had an MRI. Probably the most difficult part of our entire trip was keeping Tillery from eating before her 12:30 appointment. As she said multiple times "I'm so sad about you not letting me eat!" which was always accompanied with folded arms and a pout. But we spent the morning running around the Ronald McDonald House in our pjs, playing in the playroom and game room and reuniting with old friends to pass the time. When it was finally time for Tillery's appointment, we all went together to the hospital and went back into the small holding room in radiology together. When it was time, I walked her back into the room and held her as she was put under anesthesia and then passed her off to the team and went back to the room where Joe and Luke were waiting. We asked Luke if he was ready to go get lunch but he was worried we were forgetting something, "What about Tillery?" We explained that Tillery was with some really nice doctors who were taking her picture while she took a nap and as soon as she woke up, we would go back to see her. Explaining things to Luke has always been easier than we expect and I'm so thankful for the innocence of children as we navigate this world of medical complexities.

After about an hour and a half, I was called back to the recovery room. When I walked through the door, I heard a commotion behind the curtain and when I opened it I found Tillery fighting a nurse to get her IV out! This child has come such a long way in the 2 years we've been doing this and watching her fight back always reminds me of the fight she has in her. She's strong willed and determined and those are wonderful qualities to have in her corner. The nurse removed the IV and Tillery started fighting to sit herself up. She was still drowsy and couldn't handle her head well but she was ready to get out of there and she knew the drill. She wanted to sit with me and wanted "something to snack" immediately. They brought her a cup of water and some Saltines, which she devoured. They cleared her to leave radiology and we made a trip to the 8th floor to the neurosurgery clinic to have her shunt reprogrammed by one of our favorite nurse practitioners.

While Tillery and I were having her shunt reprogrammed, Luke and Joe were attending to some serious business...acquiring tickets to the children's museum. Wednesday was an appointment free day for us and we wanted to have some Cincinnati fun so the boys went to the Family Resource Center at the hospital and got us free tickets to the museum.

Wednesday went like this...
- Checked out of the Ronald McDonald House (they were booked up for Wednesday night)
- Found a local diner for breakfast, including Cincinnati's famous goetta
- Played hard for a few hours at the children's museum
- Checked into our favorite hotel when we can't get into the RMH
- Went to dinner at Montgomery Inn, famous for it's ribs
- Settled in for the night

Wednesday we stayed busy enough so we kept our minds off of the looming appointments. Thursday morning, we woke up and looked out the window to see a winter wonderland. The kids were thrilled to see snow and loved watching a snow plow clear the parking lot. We headed to the hospital to meet with oncology at noon.

The first person who came in was Elizabeth, our nurse practitioner. She began by launching into, "The scan is stable.". We were happy and confused. She had us recount the past few weeks and the series of events that led us to being in Cincinnati. Then she briefly talked about how CT scans and MRI's are very different types of imaging. Different radiologists also measure different ways and the complexities of Tillery's type of tumor make it even more difficult to gauge the exact measurements. All that said, the scan from November 10 and the scan from January 3 were virtually the same image. No new growth!!

Next, our oncologist, Dr. Fouladi came in to discuss the news further. While we were expecting to work out a battle plan, instead, we were hearing that we are remaining OFF of chemotherapy! It's hard to describe how weird this all was for us and while you might expect us to be jumping for joy and high fiving, instead, we just kept asking questions and learning more about Tillery's tumor. Our knowledge has come in waves, almost as we are able to process it we learn more. So, while Tillery's diagnosis falls into the category of low grade glioma, we learned that there is a very small chance that it could develop into something more aggressive. It's not likely but that is why quarterly scans are so important and acting on new growth immediately is essential. We have always been told that this type of brain tumor isn't considered terminal, but is like a chronic medical issue. We may go through periods of time when it's dormant and it can flair back up at times, too. The chance of regrowth/new growth is 60% in 5 years and they seemed to talk as though they expect growth in Tillery's case. They said we may go months or years without growth but if/when growth occurs, we would do a biopsy to see what we are dealing with and then look at chemotherapy options again. Our heads were swirling as we ended our meeting with oncology and headed upstairs to see our neurosurgeon.

While Dr. Fouladi had pulled up the MRI imaging and talked to us a bit about it, Dr. Vadivelu went a little more in depth about the tumor and what the next surgery might look like. As we have always known, Tillery doesn't have any extra room in her head. This means that if there is tumor growth, we will likely know it because we will see symptoms. Typically, brain tumor growth shows itself as headaches, balance issues, and vomiting. In looking at Tillery's scans, her tumor is made up of a solid portion and also a large cystic (or fluid) portion. The cysts are more unstable than the solid mass and can have increased size or pressure that happens quickly. Dr. Vadivelu talked to us about location of the cystic portion and how growth in those areas could result in seizures or in brain damage to the thalamus, which is the hub of information in the brain. The next surgery would be to remove the cysts as well as some of the solid tumor. Removing these cysts, reduces the risk of the side effects like seizure and brain damage but those same things are risks associated with the surgery itself. At this time, the surgery can happen any time. We could schedule it now and have it out of the way, but risk damage during a time when she is otherwise healthy and thriving. Or, we could wait and see how she does off of treatment and watch the tumor closely for growth. Whenever growth occurs, we could schedule an emergency surgery to do what has already been discussed as well as debulk any new growth. The risk in waiting is the possibility of damage or side effects if there is growth.

There is no right choice but it is ours to make. Joe and I are going to be praying over this decision and ask you to join us in prayer. Both options have risks but we are also very grateful to be in a position where surgery is not vital at this time and there are choices. We will continue to stay in touch with the team, asking them questions as we have them and we will be doing some research on our own.

At this time, Tillery is done with treatments. She will have quarterly MRI's to track the tumor. She will go once a month to the oncology clinic to have her port flushed and to have labs drawn. She is down to one daily and one weekly medication. She's blending in more and more with her peers and we are thrilled to see how far she has come. Her medical team is also thrilled. When they mention the night we all first met in the ER, it takes us back to that day and that place. We can remember every detail. We knew what we were facing was something scary. What we didn't realize was how scared the team was for us as well. She's come a long way and beat some serious odds and we are all amazed to watch her now.

We don't know what the future holds, immediately or long term. We can't predict growth or how she would respond to future types of treatments. That is the difficult part of what Tillery battles. Tillery is done for now but we know that it's likely this is not the end. We can't use the words "cured", "healed", or "remission", those are not words for us.

You hear us talk a lot about funding research. Tillery's prognosis is good. Even though it's long term and even though she's never "done", we have our daughter. So many we have met have lost their children. We think of those families and those children every day when we look at Tillery. All of these kids deserve better. The only way we get there is through research.

To make a donation to our fundraising efforts with Alex's Lemonade Stand, click here. We won't stop until we have beaten this.

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".