Tuesday, May 31, 2016

Day 31: Thank You

We want to thank you all for being on this journey with us. Thank you for reading our story, sharing our story, raising awareness, caring about our daughter, and just being you. We have lived life moment to moment at times and in those hard times, it’s been your words of encouragement that get us through. Your prayers lift us up to The One who can bring comfort and healing. By allowing our daughter to touch your heart, you are making cancer the loser in this game.

Our brain tumor journey started 600 days ago today, when we took our daughter into the hospital for a scan to rule things out and instead our lives were changed forever. Some of you have been with us for the full 600 days and some of you have just joined us recently. The month of May is Brain Tumor Awareness Month and we have tried to use our posts this month to tell our story and to show you what we have experienced and what we continue to experience. In making the daily posts, I have been blown away by all of the likes, comments, and shares that the posts have received. Tillery’s story is doing exactly what this month is set aside for…raising awareness.

We'd like to invite you all to visit TilleryisLoved.com, the new blog site for Tillery’s medical updates. I’ve put all of May’s daily posts there if you would like to revisit any of them and will be using this page for updates moving forward. Her Caring Bridge page will remain open but all that will be posted there will be links to TilleryisLoved.com when a new update is shared. Please feel free to share the website as well as this Facebook page and continue to help us raise awareness.

We are thankful for Tillery’s long term prognosis and the continued improvements we see in her daily. Tillery is a survivor. We share her story for all of those who haven’t survived, for all of those with a terminal diagnosis, for all who are fighting to stay in the game, and for the 9 children who are diagnosed every day with a brain tumor. We want to raise awareness and research funding. Most importantly, we want people to always see that there is hope. Jesus Christ gives us that hope. If you struggle to find hope or do not know Christ and are seeking, please reach out to us and allow us the blessing of helping you find hope in Him.

You are all loved, just as Tillery is Loved.

Thank you,

The Phillips Family

Monday, May 30, 2016

Day 30: Tillery's Mom

As Tillery’s mom and caregiver, I’ve been through almost all of this journey right alongside her. I’ve written many of the posts and blogs you have read so most of what you know is my perspective. Many of you have commented on my strength and how you don’t think you could do what I do. Allow me to share the full truth…

On the day Tillery was diagnosed, after they told us about the tumor and then took us back to see her, I was scared to touch her. I had very little experience with hospitals and sick people made me uneasy. I didn’t know if it was okay to hold her or if it would hurt her. I didn’t know if I should sit or stand in her room and I definitely didn’t think I should sit on her bed. It took many days in the hospital before I started to feel a little bit “comfortable” with our surroundings.

When Tillery had to have her bone flap removed for 2 ½ months, I was scared of her again. I didn’t know how to keep her from getting hurt. I didn’t even know how to wash her head or hair. The side ponytail style was invented to distract from the indention on the other side of her head that seriously terrified me. 

Last summer was a sea of vomit and thermometers. There were countless calls to the hospital and many ER trips. I was unhappy with what our reality was shaping up to be. While people praised my positivity, I was secretly very sad. I started to think that was the “new normal” everyone kept telling me to embrace but I most definitely did not want any part of it. Again, I was scared.

That’s what this journey is, it’s a rollercoaster of scary new challenges mixed with exciting walking highs. I try to be pretty transparent here about our experiences. It’s not always easy and we aren’t always strong.

Lately, though, things are good. I feel like we are normal people (or at least the amount of normal that we will ever achieve). We are slowly cutting out medicines, weaning therapies, and cutting back on time in medical offices. We are going to playgrounds and dining out. We have come to a time when I can breathe and sometimes even forget.

Now, I’m a mom who wants to pee in privacy. I want my kids to stop whining and to pick up their toys. I want to go to Target and get a Starbucks. I want the kids to eat their lunch instead of claiming not to be hungry, only to ask for a snack 20 minutes later. And, I want my kids to always be best friends. Pretty standard mom stuff.

My super mom strength only kicks in as needed in times of crisis. The rest of the time, I’m fueled by caffeine and the hope of a long nap.


Sunday, May 29, 2016

Day 29: Tillery’s Dad

One never knows how to go about writing for something like these updates. Alana has done a pretty amazing job with them. She has asked that I write something to help folks understand a dad’s perspective. Kind of hard to do as each person is different and deals with experiences differently. So here is my perspective.

The past 20 months have been a whirlwind of emotions, as you can imagine. It is hard to see one’s child having to endure the things that Tillery has had to face. I am amazed by how well she does in handling all of this stuff. As a dad I feel a need to protect her from the craziness of the world, but how does one do that when the craziness is a brain tumor? I surrendered control that September 30th. There was nothing I could do to protect my little girl. She has a brain tumor. Something foreign is taking up residence in her head.

I made the decision to try to be positive and have a good disposition. I was not going to allow myself to have a pity party. I had/have no idea how all of this stuff is going to turn out. And it is hard. But I will continue to smile and rejoice in all victories, however small or big. I will tell of how I am amazed by Tillery. I will tell anyone who listens, how awesome Luke is. I will forever be thankful that Alana is my partner on this journey. I will never ask, “Why us?”, but instead simply be thankful that we have our faith. I play a small role in all of this. I am in the background simply doing what needs to be done so my family can have as normal a life as possible. I will continue to do so as long as I draw breath. Trust me, this course of action does not make me a hero. Tillery, Luke, and Alana are the heroes. I will not live with fear, but with an eternal hope. It is the hardest thing I will do. But when I see my family smile, hear their laughter, and love one another, I am humbled that I get to share in all of it. I am thankful that I can see the blessings in all of this.

My perspective is that we have grown closer because of Tillery’s brain tumor. We are a happier family. Crazy to read that, isn’t it? But, I believe it is true. We do not get upset about much. I take every day as another opportunity to live and laugh and be amazed by my family. I never know what each day is going to bring. Some days are harder than others. It is never easy to see Tillery and Alana drive away to go to the doctor, or worse Cincinnati, while I stay and maintain the fort here. It has to be done. So I will do it.
As always, I thank you from the bottom of my heart for your support for us in all of this. You guys have been our rocks through some pretty hard times. We share all of these updates so you too can rejoice with us. Please do so with hearts filled with thanksgiving. God is Awesome, always.

Saturday, May 28, 2016

Day 28: Through the Eyes of a Child

I interviewed Tillery’s 5-year-old brother, Luke about her illness. Below are his answers.

What do you know about Tillery’s hurt place on her head? She falls down.

Do you know what it’s called? Chemo

Have you ever heard the word cancer? No

What is a brain tumor? I don’t know…medicine?

Is Cincinnati a good place or a bad place? A good place.

What happens there? Tillery goes to her doctor.  She watches TV there and gets her medicine.

What do you think of the Ronald McDonald House? I love the tabs!

How is Tillery now? Good.

Is she still sick? Yeah. Her head hurts.

So she’s good but her head still hurts? Yeah.

Friday, May 27, 2016

Day 27: Nana and Poppo

Tillery has some special people in her life that deserve a post all their own. They are two of Tillery’s favorite people and two who have given up more than anyone to support our family. Not only have they been supportive, they are actually on the journey with us. I’m talking, of course, of Nana and Poppo.

 Nana and Poppo are my parents and they have been with us from the beginning. Nana stayed at our house to help with Luke on the day that we took Tillery in for her first MRI that started us down this path. Nana and Poppo brought Luke to Cincinnati and sat with us in the B3 surgery waiting room while Tillery was in her first major surgery. They have often put their lives and plans on hold to help us in whatever way we needed.

 While Tillery and I were in Cincinnati, Nana would go to our house in Tennessee a few days each week to stay with Luke so that Joe could come up and visit us. That allowed Luke to keep consistency with his school schedule and made it possible for him to stay at his house with his things. Keeping his life as normal as possible was something that was very important to us as Tillery’s life was so abnormal. We wanted Luke to be able to keep his innocence and not expose him to all that was happening in Cincinnati.

 Joe, Nana, and Poppo were on somewhat of a rotating visitor schedule in Cincinnati. We were rarely alone there for more than a few days before one of them or a few of them came up for a few days. Having them rotate allowed Tillery to get some one-on-one special time with each grandparent and form bonds with them separately as well as together. She loves purses and talking make-up with Nana and having Poppo be silly and tell funny stories.

 Even now, Nana comes with us to Knoxville most weeks for chemotherapy appointments. She entertains Tillery in the car and helps out at the hospital. It’s a fun, weekly girls outing and takes our minds off of the real reason for our weekly trip.

 Nana and Poppo have each spent the night on the blue plastic couch in the hospital. They have each walked Tillery to the operating room and been there in the PACU when she’s waking up from anesthesia. Nana and Poppo have each had to assist in holding Tillery down during a tortuous procedure like bedside stitches, dressing changes, or port access. They have watched her cry and made her laugh. Most importantly, they were both in the room when our oncology team came in to tell us that Tillery’s tumor was survivable.

Joe and I appreciate the sacrifices made by Nana and Poppo for us and for their grandchildren. We are so grateful for all of their support. The kids are too!

Thursday, May 26, 2016

Day 26: Third Time's a Charm

We loved Cincinnati Children’s but missed being home. We didn’t love Erlanger Children’s but wanted to stay in East Tennessee. We needed a children’s hospital that was equipped to handle Tillery’s day to day needs while also keeping us in the Holston Conference for Joe’s job. We found what we needed at East Tennessee Children’s Hospital in Knoxville.

ETCH has been a great fit for us. A clinic visit feels friendly while also being professional. The staff drinks sweet tea and talks like us, unlike our more Northern friends in Cincy. Everyone has been wonderful to accommodate our schedule as we have had issues with traffic or weather that delayed our arrival. They communicate wonderfully with our primary team in Cincinnati as well as our local pediatrician’s office.

Dr. Spiller is specialized in pediatric neuro-oncology. She communicates easily with our primary oncology team and the neurosurgery team. In addition to the medical side of things, Dr. Spiller has been a great match for Tillery’s sassiness. Most of her weekly evaluation happens while walking circles around the clinic alongside Tillery. When we are in the room, she knows the things that Tillery is interested in and talks to her about those things while doing her exam.

The nurses and child life friends are also wonderful. They know that Tillery’s first priority is getting a snack and then she needs her baby and doctor’s kit. While Tillery roams the halls, everyone stops to say hello and there are always compliments on her hairbows and cute outfits. Anna always comes with her iPad already tuned into Mickey Mouse Clubhouse when it’s time for port access and Tillery usually doesn’t even realize the chemo has been administered until all is done.

We are moving to Knoxville in a few weeks to be closer to our ETCH team. The gang there is excited to have us as locals and they are look forward to buying lemonade from Luke once we are ready for our next lemonade stand. We are also excited to be able to be more involved with events that the parents group organizes and to be able to socialize with many of the families that we see weekly at the clinic.

Wednesday, May 25, 2016

Day 25: Home Away From Home

I’ve often made posts about the Ronald McDonald House, our friends there, and how wonderful our experience there has been. Today is dedicated to “our house”.

On the day we checked into the house for the first time, I was extremely overwhelmed. Tillery was in the hospital being treated for a complication she experienced after her first surgery. My mom, Luke, and I walked across the street from the hospital to check in at 6:00 p.m., the time I would soon come to know as dinnertime around the house. While I filled out paperwork, mom and Luke were shown to a playroom and invited to join in the meal being served in the kitchen. As I looked around at all of the families in the house, my heart hurt. I didn’t yet feel I fit in in this world of sick children and instead, I felt sad for all of the families who had to stay here and the trials they all go through.

Over time, my experience at the RMH changed. I went from feeling like I didn’t belong there to feeling like I didn’t belong anywhere else. I met other families and formed relationships that were stronger bonds than many I had experienced before. We didn’t just share a house, we shared our lives. I met some of my best friends living in the house. I met Leslie while petting therapy dogs in the lobby. I met Carleen while moving my laundry from the washer to the dryer. I met Julia walking around the house strolling our little ones. I met Jackie and her boys at the Christmas train table. I met Carrie chasing her child who was “leaking”. I met Cassie, Amanda, Sandy, Diana, Margaret, and so many others in the kitchen, the hub of activity. So many friendships were formed just doing life in that house together.

In addition to the other families we’ve met, there are some amazing people that make it all happen for us. The staff and volunteers are amazing! Every day starts with Kinney and Don – the coffee crew. Monday mornings are special because Jane is there. Mary is always baking something yummy. There is a couple that volunteers at the desk who once fixed my broken cell phone. One volunteer brought me a rug from her house for my room and another used to find us to bring toys to Tillery. The staff members always put our families and our kids as their first priority. I’ve watched them stop what they are doing to get down on the floor and play with Tillery or stop talking to someone important to catch me and let me know they are praying for us.

I have had haircuts, manicures, and massages at the house. We’ve heard musical performances, petted animals, played hide and seek, met princesses and mascots, and seen far too many clowns. I’ve eaten countless tacos and “pancakes and more”, drank an absurd amount of 50 cent Cherry Cokes, and had more dessert there than in the entire rest of my life combined.

In the meditation room on the second floor is a Tiffany lamp that sits in the window. It’s a window that our eyes are drawn to every time we walk through the lobby because when that light is on, our house is hurting. The lamp shines for 24 hours in memory of a houseguest who has passed away. While the light was shining for their children, I hugged Ness in the hallway, Leslie in the kitchen, Jamie in the lobby, and Mary Ann in the parking lot. I’ve seen the lamp turned on far too many times and sometimes there were full weeks that the lamp was left on. While the lamp shines during a tragic time, there is something comforting about that light shining through the darkness.

That Tiffany lamp is much like the house itself. Something beautiful during something horrible. We experienced the worst night of our lives in that house but we have also seen some beautiful things happen there. We ate a wonderful Thanksgiving meal in the lobby of the house with our family, my parents, and Joe’s cousins. The four of us celebrated Christmas morning in our room at the house after Santa dropped off a bag of gifts the night before. Tillery befriended Miss Pre-Teen United States in the lobby and they formed a special bond.

I leave you with this, my favorite RMH memory. It’s one that truly represents the love of the house. We were in the kitchen after dinner one night and the fire alarm went off (it is super sensitive and happens often). When we went outside, it was snowing and one of the families with me had a child with a trach and vent. Khloe and her equipment needed to be kept warm. I watched as countless people, gave her their coats and blankets and stood shivering in the snow, waiting to be told we could go back inside. That is the Ronald McDonald House. It’s a house of love.

Here is a link to a photo tour of the Ronald McDonald House of Greater Cincinnati. It is a very beautiful place. http://www.rmhcincinnati.org/about/our-house/photo-tour