Tuesday, January 24, 2017

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!

Sunday, January 15, 2017

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

Saturday, January 7, 2017

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.