Friday, July 14, 2017

Appointments Recap

This week, we returned to Cincinnati for our new normal of quarterly scans and appointments. Tillery had her tumor debulking surgery March 10th so this was our first imaging since the day after surgery. It's the first time to look at imaging when we were done with treatment and had no future plans for treatment.

The big news: The Tumor is Stable!

We had 4 appointments Thursday and while the biggie was the MRI, we had other questions and items on our agenda.

First up was a neurology appointment. Tillery has been on an anti-seizure med since she was 15 months old, when she was diagnosed with a tumor. At the time, it was given as a preventative medication since they did back-to-back brain surgeries and weren't sure how she would respond. She doesn't have a confirmed seizure history but there is a possibility that she had a seizure in-route to the hospital after her fall in November 2014. Since she's had no other seizure activity, we wanted to talk about weaning off of this medication. The neurologist is ordering an EEG of her brain when we come up for our next MRI to see if there is any activity that makes her feel that Tillery needs to stay on the medication. If not, we will begin weaning following our next appointments.

Next, we had her MRI. Tillery's port was accessed before we went to radiology and they decided to have me carry her into the MRI room and they would put her to sleep using her port. They cleaned her line that they had pulled behind her back and then said, "Mom, hold her tight." I gave her a big hug and said, "I love you, Til." She squeezed me back and said, "I love you, too, Mom!" and then went completely limp. It was a sweet moment until she started to thrash around and make a moaning sound and I remembered why I hate holding her while she is put under anesthesia. Then she finally stopped moving and the nurses helped me to gently lay her on the table.

I went to the cafeteria and had lunch with some friends while Tillery was in the MRI machine. About an hour later, the radiology nurse called to tell me she was starting to wake up. I went down the hallway to the recovery room and before I got to the door to knock, I could hear the screaming and I knew Til was awake. Tillery is either sluggish to wake up and we end up hanging out in recovery for an hour waiting for her to wake and nibble a cracker OR she wakes up like a firecracker and is mad and ready to go. Well, this time, she woke up mad as a hornet! When I got around to her bed, she was trying to sit up and was yelling about wanting to leave. But don't imagine a typical mad 4 year old, this was like a drunk 4 year old. She was slurring her speech, couldn't keep her eyes opened for long, and couldn't hold her weight up so she kept falling back on the bed. I got her in my lap in a rocking chair and tried to calm her but she just kept fighting me, too. She wanted a drink and when they brought her a sippy cup she yelled, "Not in a baby bottle!" then she squirted a juice box all over herself. They wanted to see her eat something but they want you to start with a saltine. Tillery didn't want a saltine, she called them "boring crackers". After I got her to eat one, still fussing, I asked the nurse if I could give her something else. When he agreed, I handed her a bag of Cheeto's and she cheered. She started stuffing them in her mouth as fast as she could! The nurse asked if I could have her slow down and I said, "No, I really can't." She perked right up and was ready to head off to the next appointment!

Next up was oncology, where Tillery's oncologist had already viewed initial imaging. The tumor was stable!! This meant that we could discuss our topic of the day for oncology - removing the port! Our Cincinnati oncology team will reach out to our East Tennessee Children's team to have them schedule a local outpatient procedure to remove her port. The port that delivered weekly poison into her bloodstream will be taken out and Tillery will have one less foreign object in her little body. It's one step closer to normalcy. Tillery can get a 100.5 temperature and we won't have to rush to the ER and she can finally go to the dentist for a teeth cleaning, without worry of germs. Once the port is removed, we won't have a need to go back to the hospital except for the quarterly follow ups. No more monthly pokes!

The final appointment of the day was neurosurgery. We already heard the tumor was stable but we had one other reason to meet with neurosurgery - an uneven bone flap! The bone flap on Tillery's left side hasn't fused perfectly since her March surgery. When the tumor was removed, the negative pressure caused her bone flap to sink in when it was replaced. Luckily, Tillery's surgeon feels like the bone is fused strong enough to not cause a safety concern. At this time, it's just a cosmetic issue. Because it's possible that Tillery will need future surgeries, we would look to correct the issue at that time. So for now, we are cleared from neurosurgery for 6 months.

It was a long day of appointments but overall was a day of good news. We will schedule a port removal soon and won't go back to Cincinnati until October. We are excited to continue life on this side. We might not be "normal" but we are pretty darn close!



We love how well Tillery is doing but we will never shake the images of all we have seen. Our daughter has been really sick and we've seen many other really sick children. We've lost friends to childhood cancer and we will never forget. September is Childhood Cancer Awareness Month and we already have our fundraising link live. To join us in finding a cure, click the link here or email us at hope@tilleryisloved.com.

Monday, May 29, 2017

Tillery's Hustle for Hope 5k

Sorry to be so late in posting a recap of the inaugural Tillery's Hustle for Hope 5k, life has been happening. That said, on with the recap...



May 20, 2017 was an amazing day!

We had many friends and family from various locations come to town to join us for our first 5k to fund pediatric brain tumor research. It was so great to see so many people who have been with us along the way and to get to share the joy that is Tillery's current health. But all those special friends and family only made up about half the crowd. The others were runners, philanthropists, and people just looking for something to do on a Saturday morning. We were so thrilled to expose a group of fresh faces to our cause and we left there with many new advocates for childhood cancer.

We had 4 awesome kids with us who are currently survivors or fighters who are winning the battle. Having friends like Brody, Wyatt, and Dallas alongside Tillery was a great way to show the crowd of about 150 runners who they were running for. We also had our new advocate mama friend Elizabeth there. She wasn't able to bring her daughter because Julia passed away last May from a DIPG brain stem tumor. The reality of our pediatric brain tumor world was staring these runners in the face. Also, standing with us was our hero, Dr. Sue Spiller. Dr. Spiller is the pediatric oncologist who treats many of the brain tumor kids in the region at East Tennessee Children's Hospital. Dr. Spiller even came ready to run for Tillery with her hair in a side ponytail!

 

 




It was a beautiful day for a run and after a few words from Joe, the crowd made their way to the start line. While so many were out pushing themselves on the course, Tillery was socializing on the playground and making new friends with people who had come out in support. Tillery posed for many pictures and told many stories to her new friends.

Top Finishers were:

Men's 1st Place: Eric Suchyta, 20:51
Men's 2nd Place: Bradley Farmer, 21:59
Men's 3rd Place: Andrew Keller, 23:08

Women's 1st Place: Jennie Tillery, 24:02
Women's 2nd Place: Macy Caldwell, 24:32
Women's 3rd Place: Dr. Sue Spiller!!, 27:48

Many thanks to all who participated and our awesome sponsors:

Holston Methodist Federal Credit Union
Ingles Markets
106.7 The Light
Fleet Feet
Acme Printing
Buttermilk Sky Pie Shop
Powell Church


With the help of our sponsors, our participants, and other donations, we raised over $10,000 to fund pediatric brain tumor research grants!

Plans are already in the works for the 2nd Annual Tillery's Hustle for Hope 5k.

Watch the video slideshow from the run here.







Friday, May 12, 2017

Go Gray Sunday

Go Gray Sunday is an idea we have had for awhile. It grew from all of the churches who sent cards, care packages, and prayers to us over the past few years. We began talking about inviting all churches to join us for an awareness day. May is brain tumor awareness month so we decided to coordinate with that and asked churches to participate with us on the first Sunday in May.

Joe pitched the idea to many of his clergy colleagues and I reached out through my clergy spouse friends. We shared the details with some other parents of children with brain tumors and had them send it to their pastors. Before we knew it, Go Gray Sunday was becoming a reality.

We had so many churches interested that our writer friend, Annette wrote a story for the United Methodist publication, The Call, and that article pointed even more people our way.

So far, we know of 21 churches that participated with us in some way. Some churches held fundraisers or took special offerings. Many churches included children with brain tumors during prayer time. One church created an awareness video that was shown in many of the churches. A bulletin insert was created with facts and statistics about pediatric brain tumors.

At our church, we shared our story and a message of the hope that has seen us through it all. To see our presentation from Sunday, click here. We would love to share our story with your group, too. You can email us at hope@tilleryisloved.com to coordinate a time for us to come.

You can hold your own Go Gray Sunday anytime. Contact us for details and we will help you make it happen!

So far, Go Gray Sunday has raised $3500 and we are still waiting on fundraising totals from many churches. To make a donation, visit GoGraySunday.com or mail to TIL Foundation; P.O. Box 12052; Knoxville, TN 37912.

Thanks again to all of the churches who have joined us. You are such a blessing to so many!


Thursday, April 13, 2017

Recap Video of the Journey

Thanks to all who have supported us along the way. We have had peaks and valleys but through it all, we never walked alone.


Thursday, March 16, 2017

Time to Push Pause

So last Friday, Tillery had a 9 hour major brain surgery and then was discharged on Tuesday with a prescription for Tylenol that she's never needed. That's how our girl does brain surgery! One surgeon actually commented to her that "It's not drive thru brain surgery, you are allowed to stay a few days and recover."

We have had our share of hard recoveries and delays that last an uncomfortably long time. In fact, having Tillery follow a plan and actually be ahead of recovery is very out of the ordinary, so we are having a hard time processing this! To think that she has to stay home from school and church and social settings for a few more weeks is hard with as well as she seems. It feels like she's right where she was this time last week.

So here is where things stand:
We will return to Cincinnati the first week of April. Tillery will have an MRI to make certain that her brain looks healed from surgery and then we will meet with her oncology and neurosurgery teams. She will have her stitches removed, we will give out hugs and high fives and we will say "see ya later" for 3 months. This will be our new routine: quarterly MRIs and follow ups with the teams. There is no future treatment plan at this time. As this chapter closes, we also close the entire volume. In the future, if there is growth, we will begin again, but for now we press pause on our cancer journey.

This is all very bittersweet.

Yes, we rejoice at how far she has come! Yes, we rejoice that there is no more chemo! Yes, we rejoice that there is no more surgery! BUT, there are things we know...

The chance of survival from a pediatric brain tumor is 66% over 5 years and we are at the halfway point.

The chemotherapy that ran through her veins 64 times has late side effects. We know a child who ended treatment on the same drug 2 years ago and is just now seeing the cognitive side effects.

The chances of developing a chronic health condition as a result of childhood cancer treatment is 95%.

Tillery's team seems to expect to see her tumor grow in the next 2-5 years, or to put that in Tillery's world, Kindergarten - 3rd grade.


We have watched many children leave this world. We have seen many children affected by harsh side effects. We have seen kids beat one cancer and then develop a secondary cancer. We have seen kids who heard the word remission and then had that word taken away.

We will not live in fear. We will also not live in ignorance.

This is why we push so hard for research funding. We know that Tillery's journey is never over. We live with so many unknowns and we push for research to lessen them. We want kids to not only beat cancer, but also to be free of it. We want the dark cloud of looming side effects gone. We want kids to be kids who grow up to be adults. And we want parents to get to breathe again.

We will continue to raise awareness and research funding. We will keep sharing our life and our daughter as the face of surviving. We will never forget the friends we've lost and will work hard to make sure you never forget them either. We will keep being real.

All that said, we hope our time of updating about Tillery's medical concerns is coming to a close. Thank you for loving her so much.

Saturday, March 11, 2017

Better Than the Best Case Scenario

When you have a baby you spend a long exhausting day at the hospital (even if you aren't the one in labor) and then at the end of the day, you are given an amazing miracle in the form of the gift of life. Yesterday was a long day and after logging many hours in the waiting room and many trips to the cafeteria, we were given an amazing miracle in the form of the gift of life.

Coming into this surgery we were struggling with the knowledge that this surgery was our decision. (Many factors played a part in making this decision and many of them had less to do with a medical necessity and more to do with insurance coverage.) Tillery's surgeon gave us the option to take a healthy and strong child into the operating room for major brain surgery or to wait and watch the tumor and return to the OR when growth happened. In the end, the decision was ours and we chose to proceed with a scary and risky surgery.

The plan was to make some room in in Tillery's brain. Her tumor involves a large fluid area that had formed into cysts and we wanted to break those pockets up so they did not fill with pressure. The plan was to try to safely remove some of the solid tumor as well. Because of the location of her tumor, we know that a full tumor removal will never be a safe option and she will always have some mass that remains. Now that she has completed chemotherapy, she will be having quarterly MRIs done to measure and track the size and make up of her tumor. This surgery allows for space for the tumor to have safe growth, if it does begin to grow again. We wanted to give room for new growth to not cause permanent brain damage. The surgery was estimated to last under 6 hours.

That was the plan...

Tillery's surgeon came to meet with us after surgery was completed...NINE HOURS LATER. He told us that he followed the same incision area from her first surgery for tumor debulking. Her bone had fused back so well that he had to make a fresh cut but that was good...hoping she heals like that again. Under the bone flap he found...wait for it...new brain growth!! This is so amazing and gives so much hope that after this surgery, the debulked areas will also fill with new brain growth! Wonderful! Because there was new brain growth, he didn't want to open the area very wide, not knowing what might be happening in that area. So he opened a smaller area than he originally planned and tried his best to work around the tumor to get the cysts broken up. (He first told us that he didn't think he got them all but a later CT scan showed all the cysts had been broken up!) Then for our final big news! Tillery's first debulking surgery removed about 10% of the mass and we were prepared for something similar with this surgery. Dr. V told us that he kept going, basically coring out the center of the tumor and he felt like he removed about 40%! FORTY!! The news from Dr. Vadivelu was amazing, miraculous news! Better than the best case scenario we had imagined! What an amazing blessing!

Today, Tillery had an MRI to confirm the news from Dr. Vadivelu following surgery and to make sure everything looked fine post op. All looked well and we were able to see on screen the side by side comparison images to show what a difference a day in the OR made in our precious daughter's brain.

Following the MRI, we were discussing extubating her. The neurosurgery team started removing her bandage to be able to reprogram her shunt following the MRI and she started fighting. Joe held her head and spoke softly to her while I held her IV covered arms down. A team gathered in the room and decided to go ahead and extubate even though it was still a little early. The tube came out with some fight from Tillery and almost immediately we were seeing our girl back with us. We would ask her questions and she would nod and then she started blinking her eyes. She has a favorite story she has recently made up about a pigeon who goes to a pizza place and we talk about all his favorite pizza toppings. There is one specific topping that Tillery thinks is really funny. As we were talking to her, I asked if she wanted a pigeon story and she nodded. When I got to the part where we discuss toppings, we all got teary eyed when she softly said "nachos", her favorite silly topping! And with that, we knew our girl was still with us!

The rest of today she's been becoming more and more alert. She's told knock knock jokes and requested favorite videos. She has Facetimed with a few friends. She ate 3 packs of graham crackers, 2/3 of a quesadilla, 1/2 a banana, and some peas and carrots. And she's gotten very silly and chatty tonight.

Tillery has especially liked her night nurse, Ryan. She told him all about her brother, Luke Phillips who is 5 and in Kindergarten. She told him about our white dog Emma who is at the pet hotel. Then she invited him to sit with us and be her best friend. As he set up her meds on the pump she kept asking about each one and then said "I'm just s curious bird!"

Yep, our girl is back. It's a miracle!




Here are links to some open fundraisers to help us fund a cure:

Awareness T-shirt
https://www.booster.com/gogray

Tillery's Hustle for Hope 5k
https://runsignup.com/Race/TN/Knoxville/TillerysHustleforHope5k

Stitch a Thon (pledge $1/stitch from tomorrow's surgery)
https://www.facebook.com/events/1855412508033850??ti=ia

To make a donation to Tillery's family
https://www.gofundme.com/fcfxb4


Tuesday, March 7, 2017

Last Day at Home, then Cincinnati Bound

Today was our last full day at home. Tomorrow, Tillery and Alana will head to Cincinnati to begin prep for surgery. Joe, Luke, Nana and Poppo will join us in Cincinnati on Thursday evening. Here is what our day will look like on Thursday:

We will wake up early for a big breakfast because Tillery cannot eat anything after 8:00 a.m. (until after her 5 pm scan!!!)
Meet with neurosurgery at 1:00 p.m. to ask final questions and sign all consent papers for surgery and anesthesia.
At 4:00, we report to radiology to get ready for a 5:00 p.m. MRI that will include having her head marked for surgery.
Following the MRI, Tillery will be admitted to A7, the neurosurgery floor of Cincinnati Children's Hospital. They want to keep an eye on her through the night and will be able to have her prepped and ready for surgery on Friday.

Tillery's surgery is scheduled for 11:00 a.m. Friday morning. They expect her to be in the PICU for 3 days and then to return to A7 for another 3 days. All of these days are long and exhausting. We appreciate all prayers and good thoughts you want to send our way.

If you'd like to join our Stitch-a-thon, donating $1 per stitch to pediatric brain tumor research in our honor, we will probably not have a number of stitches until early next week. Comment below if you are in for the Stitch-a-thon and we'll keep you posted!

Here are some pictures of our last day home...it was a busy one!



We met this Smokies mascot in the oncology clinic at ETCH. Tillery was skeptical and wanted to know "how did he get a superhero cape?" Good question!

One last snack from the ETCH oncology snack basket!

This afternoon we went to Luke's class and talked about Alex's Lemonade Stand Foundation and how they help kids like Tillery. We read the story book about Alex and her Lemonade Stand. The kids all got coin boxes to take home with them and we all enjoyed some lemonade while coloring ourselves at a lemonade stand.

Free Pancakes on National Pancake Day with the Vaughns! (Notice Tillery sat on their side of the table!) They were taking donations to our local children's hospital so it was a win-win.

Tillery got to meet some beauty queens. She's had a longstanding friendship for Miss Haven Wolfe who we met at the Ronald McDonald House but Tillery wasn't so sure about these new friends. She asked "How did you get to be a princess?" (She's really not taking anyone's accessories for real today. She wants to see some credentials!)

Friday, February 17, 2017

Not So Rare

A dear friend asked if she could share Tillery's story on Rare Diseases Day (Feb. 28). As I started to think about it, I realized that the "rare" disease that we are fighting isn't really that rare.


Low grade glioneuronal tumor with mesenchymal differentiation...yes, that's rare. That's the official diagnosis for Tillery's mass. It took 5 weeks and pathologists across the world to finally give a name to this evil we face. When they did name it, we were told that researching it would be difficult because there isn't another case of this exact tumor ever documented. So I guess if you think about that, she's pretty rare.

But brain tumors are categorized into some groups that tend to look and respond similarly. Tillery's falls into one of the most common groups "Low Grade Gliomas". Within that group, Tillery's tumor falls into the category of Low Grade Gliomas - NOS (not otherwise specified) so she's basically in a catch all/other category but still in a bigger more common group.

And then, if you back out further, brain tumors are the second most common form of childhood cancer. Leukemia is the largest majority of childhood cancer types, which is why it's been researched more and has much better outcomes. Brain tumors have been on the rise and are much less rare in the childhood cancer world these days, especially since brain tumors are a common secondary cancer form for children who are originally diagnosed with a different form of cancer. So a brain tumor diagnosis in a child isn't as rare of a thing as you might assume.

Then, to back out further to the classification of "childhood cancer", now we aren't even talking about something rare at all. One in every 285 children will be diagnosed with cancer before the age of 20. Tillery's brother's school has 550 kids in it so statistically, 2 of the kids roaming the halls with him daily will be diagnosed during their childhood. And to back that further, Knox County Schools has 59,516 students enrolled, which means statistically 209 Knox County students will be diagnosed during childhood. That doesn't really sound that rare at all, does it?

We have friends with children diagnosed with diseases that you can name every other child with that disease because it's that rare. We also have friends with children who have no name for their diagnosis because it's so rare, they are the first case. At least for us, we fall into a larger, more common diagnosis that allows for more awareness and more treatment options. Even so, childhood cancer only receives 4% of cancer research funding, making you wonder, if they can't find cures for adult cancers, how will they ever find a cure for childhood cancers? And if they can't cure childhood cancer, how do parents of children with truly rare diseases cope with the knowledge that their rare disease gets even less, if any, funding.

We don't have the answers to solve these issues. What we do have is YOU! As you learn about our story and share our story, it raises awareness. As we share about other kids and other diagnosis, it raises awareness. As awareness is raised, funding can be raised. So continue to follow our story and talk about our story. The more we talk about it, the less rare it seems.


Friday, February 10, 2017

Surgeries

Today we are exactly one month out from surgery. In 4 weeks, we will be sitting in the B3 waiting room at Cincinnati Children's Hospital as Tillery is in the operating room for the 14th time.

Every childhood cancer journey looks a little different. Some kids are admitted to the hospital for very long periods of time and spend much of their time in isolation. Some kids lose their hair and spend their days vomiting from the chemotherapy. Some kids go through daily radiation treatments. For Tillery, her journey has been filled with surgeries.

The thing about Tillery's surgeries is that a majority of them are not "cancer related". I mean, they are all as a result of her brain tumor/cancer diagnosis but most of the surgeries aren't directly "for the tumor".

One surgery removed a pseudocyst that had grown in her abdomen at the base of her shunt.

One surgery was to place a g-tube for feeding when our stubborn 16 month old, who lacked control in most aspects of her life, simply stopped drinking and eating.

A fall that caused a brain bleed resulted in a craniotomy to remove her bone flap and allow room for swelling, then a surgery to replace the bone flap a few months later, and then another surgery a year and a half later to replace her bone with a synthetic piece after her bone never hard fused.

She's had 3 surgeries to place a shunt, 2 surgeries to remove shunts, and one crazy freak accident in which an external valve just fell out of her head while she was sitting in the hospital bed watching movies and we had to rush her to the OR to replace it.

So the only 2 surgeries she has had that were directly related to the tumor were the surgery to place her mediport, through which she received chemotherapy, and the very first surgery she had to debulk the tumor and take samples for pathology.

In one month, Tillery will have her 2nd major brain surgery to remove portions of her tumor. I really wish I had an image of the MRI to post here to explain what her tumor looks like. If you will imagine looking head on at her little face, the tumor is in the front of her head on her left side. In the imaging, it looks like it takes up about 25% of her head space. The tumor is made up of a solid portion that is more in the center of her head and it is surrounded by a large cystic portion. During surgery, the neurosurgeon will break up the cysts and that section will fill with normal brain fluid. He will also remove a safe portion of the solid mass. This should be the last safe amount of tumor removal she will have done. In the future, any debulking surgeries will be to remove new growth.

We are at peace with the decision to proceed with this surgery. The team has eased our fears by telling us that this surgery will be less intensive and less risky than the first. After surgery, there will be less pressure in Tillery's head and less foreign mass. The post-op scan will be the least scary looking scan we will have ever seen of our daughter's brain. We know the risks and we know the positives and we are confident that this is the right decision. Thank you for your support and your prayers. This journey is less scary with so many people in our corner.

Here are pictures from previous surgeries:


October 2, 2014 - First major brain surgery


October 6, 2014 - First shunt placed


November 15, 2014 - Craniotomy to remove bone flap


January 2015 - Replaced shunt for fear of infection


January 2015 - Bone flap replaced


April 2015 - Mediport placed


September 2015 - Shunt removed, EVD placed


September 2015 - More shunt pieces removed


October 2015 - Shunt placed


July 2016 - Bone flap replaced

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.