The Good, Bad, and Ugly

My heart has been aching today. Yesterday (Monday), Tori and Penny came up to Atlanta for Tori's 8th round of chemo. Since I have known her, I have not missed a single round; however, I was not able to go to the hospital yesterday because I had been gone all weekend and had too much school to do with finals coming up.


I received a text from Penny last night saying Tori broke down earlier in the day and was just over this whole journey. She wanted a sock-monkey from the gift shop, and she named it WayTay. Y'all are probably thinking "what in the world!?" The sock-monkey is kind of a inside joke with Tori and me, and a baby that my mom keeps calls me WayTay. Needless to say, the name 'WayTay' has caught on quickly with those who are close to me...especially with the Capital City family. :)

                                                Tori sleeping in the hospital with "WayTay"


The bad: It is always so hard to see Tori struggle because 99% of the time she has a smile on her face and she is the one helping everyone else through this, but there are times when it all hits her at once. These are the worst memories I will have from this journey. While I haven't been around her often when she has break downs, the thought of her happy little self being so upset kills me. It is times like those where I wish I could just fly to wherever she is and squeeze her. No one deserves to go through this, especially a child like Tori. She did not choose this path, God chose her for it. She embraces it with open arms and a fighting attitude, but again, sometimes it is just too much. It's like those times in life where we go, go, go without stopping to soak it all in, and while we're fine in the middle of it all, there comes a point where we break down. There comes a point where we feel like we cannot go on any longer, but somehow, someway God gets us through it time and time again.


I am relieved to say Tori is now done with her chemo round, but unfortunately it has already taken a big toll on her frail and weak body. Penny told me this morning (Tuesday) Tori woke up so weak and pitiful. It does not surprise me at all to hear this, and I am so thankful that the chemo is just now having a negative affect on her body. While she has struggled throughout this last year with viruses, transfusions, weight loss, etc, she has made it through better than most...all thanks be to God.


The "ugliest" part of this journey is seeing and knowing all the medicine/poison that runs through Tori's body on a daily basis. The lists of medicines that Penny has to write down every time they go to the hospital is longer than the list of medicines I have taken in my whole life. It is awful to know that her kidneys are having to filter all of these high potency drugs. The side effects of chemo are endless; hair loss, constipation, fatigue, nausea, nerve problems, permanent kidney damage, pain, loss of appetite, etc. It is also nerve rattling to know that some of the chemo drugs she is on (yes, there are more than one) have a high risk of causing other types of cancer like Leukemia and Breast Cancer. Below is a picture Penny took one night of some of her medicines she takes on a daily basis, and this doesn't include the medicines she gets at the hospital through her port, nor does it include the propofol she receives every time she gets an MRI.

On a more positive note, the best part of this year is listening to the things that come out of Tori's 8-year old mouth. Some of it is mind blowing. The one that sticks out the most to me is when I was driving her somewhere (cannot remember where). I asked, "Tori, what has been the hardest part of this year for you?" I was expecting an answer right away and quite frankly, I was expecting a list of things. However, I should have known better. She thought and thought, hemmed and hawed, and couldn't really think of anything to say. I said, "what have you missed the most, or what has been your least favorite memory?" She thought some more (it took awhile to get an answer out of her), and she finally said a short "I miss being normal, and I miss my friends." I then said "Okay, that's understandable. Now this is going to be a harder question. What, if anything, has been the best part of this year?" She said with NO hesitation and NO wait "learning that God is always with me. I now know that no matter what, he is always right beside me and will help me through anything. I also am so lucky to have you." Again, I sat there speechless. What do you say to an 8 year old who seems to have more wisdom than you at times!? I just said, "I love you, Tori." She replied with an "I love you SOOO much!"


For those reading this, take it as a lesson. No matter what is going on in your life and no matter what circumstances you are facing, you have a CHOICE on how you view things. You can either sit and dwell on the negative and be a victim of your past and your current circumstances, or you can be like Tori, someone who takes what they have been given and learns the most from it. Someone who places their full trust in God and faces the problem head on. It is easier said than done, no doubt, but it all starts with the choice you have the power to make. If nothing else, make the choice to think like Tori.


-Love in Christ,
Leighton

Weekend with Tor Tor

I am so happy I have some time to "blog" again! I was going to write a post about the best memory with Tori so far and the worst, but I will save that for another day. I think it's necessary to write about this weekend! I have gotten a lot of compliments on the two posts below, so here we go.


This weekend was a busy one to say the least! After waking up Friday and getting some school done, I headed to Columbus for two nights. It was honestly one of the most stressful trips I have ever taken. I was already frustrated because I left later than I had wanted to (I like to get there as soon as I can), and then on the drive down Penny called and gave me some good, but not so good news about the Make A Wish trip to Hawaii. After getting lost in the "not so good" area of Columbus for 30 min, thanks to my GPS, I finally made it to the Svenson's OLD home (such a good feeling to type that). After discussing some Hawaii options, Hunter, Tori, and I headed off to dinner and a movie. We went to Chile's, and it was no nice to see Hunter and Tori interact with each other outside of the house. I can honestly say that Hunter is one of the most amazing big brothers I have ever known. He made sure she was okay in the backseat by herself, he made sure her dinner was okay and that she was full when we left, and he made sure she wasn't cold in the movies. His love for Tori is quite apparent. We then went to see Titanic 3D which was a really fun experience. That is one of the few movies I will watch more than once. The kids kept their "goggles" on the whole time, but I was taking mine on and off because they gave me a headache! We then went to their house to sleep in it for the very last time. I had to wake up early Saturday morning and head out for Salute to Our Troops at Fort Benning.

After the event on Saturday, my mom and I made our way to their new house that they just moved into. It is such an amazing fit for this very deserving family, and it was so nice to sit on the couch in their new family room thanking God for this miraculous blessing and all the details that came together for them to buy it. The home is spacious, yet welcoming, new, yet already filled with so much love and hope. It was Penny and Todd's wish to own a home soon so Tori could live in it with them... whether she has one year left or ninety years. I got to sleep in Tori's new QUEEN bed... which is significant because Hunter usually always gives up his bed for us when I sleepover. So now Hunter is able to stay in his fancy bed while Tori and I get to spread out in her bed....perfection!


Before I go on, I just want to say how rewarding it is to sleep with Tori. She likes to get her head rubbed while she falls asleep, and then during the night she slowly makes her way to my side of the bed and snuggles in! When I wake up in the morning the first thing I see is her precious, resting face, and I always just stare at her and say a prayer. I would change nothing about it.

Continuing....Tori woke up at 8am this morning and the first thing she said was, "when can I get dressed for my tea party?" The tea party was an event held in down town Columbus to help raise money for the family to use in whatever way they desire. She was VERY excited about dressing up for this! I got downtown early to help set up, and at 12:30 Miss Tori arrived in her precious brown and cream polka dot dress, cream gloves, and a cream/tan hat! She looked like a million bucks (as did Penny!!). I have to literally make myself walk away from her when we are at a public event because I would love more than anything to just be right by her every second of every day. It is so fun to watch Tori interact with people she has never met before. She is always so kind, gracious, and humble. She will always find something on a little girl to compliment, and will take a picture with anyone who asks. Everyone at the tea party was extremely supportive and anxious to meet Tori. When all the "princesses and their fairy godmothers" sat down to eat, Tori and Penny went up on stage to speak. Tori got the mic first and said "I just want to thank everyone for coming today and supporting me. I also want to thank Ms. Ashley (who coordinated it), and also God for this beautiful weather and for choosing me." Then Penny got the mic, and well, everyone began to cry at what she had to say. All in all, the event was very well planned out, and I am pretty sure fun was had by all! I think the dress-up photo booth was the favorite booth of the afternoon...Tori especially loved it (of course)!

While I KNOW Tori had so much fun today (I could see it in her eyes all afternoon), I also know that those who attended got so much more out of it. To hear the comments from other people kept it all in perspective. People came out today to support Tori and the family, but they walked away as the ones who gained a new outlook on life and a new found meaning of hope and faith.

Tori continues to touch others every single day she is on this earth, and she will continue to do so for the rest of her life.


-Love in Christ,
Leighton

Dear God...

With suggestions from some people to start a blog that journals my joyful times with Tori...here it is!
To start it, here is a letter I wrote a few weeks ago when I had far too many thoughts in my head to sort out, inspired by the movie, "Letters to God." I will post a lot at the beginning to make up for lost time :)

Dear God,

I have wanted to write this for some time now, but haven’t had the time to sit down and actually write. I first and foremost want to thank you for how Tori came into my life. I really think she has no idea how much she means to me and how much I love her; although she says she loves  me many times when it’s just her and me together…especially when we are having “girl talk” before bed and I am rubbing her little bald head. You know my constant prayers of thanks for her, and You know the things I have come to realize about myself and others through her. For that, I am thankful. Thank You that You are always there as a sounding board and thank You for the strength you provide me with, so I can continue to grow closer to her.

I do have to admit the closer we grow together, the harder all this gets, but the easier it all becomes. It doesn’t make sense, but then again it does. The more I grow to love her and the more time we spend together, the more I think about OUR future together. Me being the older sister to her that I always wanted, her in my wedding, us as best friends when we are older, our children growing close together, and us having a forever special bond because of the time we are sharing right now. Maybe it’s because my mom has a dear friend, whom she met when she was 19, and the little girl was only 10…but now they are wonderful friends. I see that for Tori and me, I see it so clearly. At the same time, I see the opposite. As hard as this is for me to write on paper, I see Tori leaving us and joining you in heaven. I see her hosting dance parties in heaven, while the rest of us try to repair our broken hearts, if that would even be possible. I see the legacy Tori could leave if she were to go back home sooner than we want. Both journeys are so clear, yet so unknown.

There are nights when I rest in bed with a smile on my face thinking about her and how strong she is. I praise You, and I look up to her for how amazing she has handled this awful year. I laugh at the comments she has said about the “C word,” and I close my eyes with amazement of how an eight year old little soul can touch thousands…even through a single YouTube video. I am still getting messages of how Tori's first "YouTube hit" has impacted people from all over. I share Tori’s story with everyone, not to hear how sorry they are, but to see their face light up when I explain her view on this whole situation. My favorite is when she declares she is not scared because she knows Jesus, and she knows He is always with her- no matter what happens. 

I haven’t shared a few of our conversations and memories with anyone because I like to keep some of them to myself. While I will continue to keep some things just between us, I do want to say how I so enjoy our heaven talks. They have happened three times now. I am not sure why, but she seems to bring up heaven whenever it is just the two of us. The first time was when I first slept with her. It was my first time spending the night at their house, and I remember feeling so incredibly honored that she would feel comfortable enough with me to sleep away from her mom for a night... and that Penny would feel comfortable with it. That night, one that I will always treasure, she asked what I thought about heaven. I told her I think it is going to be the most remarkable place ever. I also told her I cannot wait to meet Jesus, but that I think it’s a good idea if we both wait awhile to go meet Him! She agreed. The second time was when her friend Jillian spent the night. We went from talking about boys (although there wasn’t much to talk about with two 8 year old little girls!) to talking about heaven and Madi Douglas, Tori’s friend who lost her battle to brain cancer in 2011. Jillian said she thinks heaven is going to be “awesome,” and Tori replied with a soft “yeah.” It looked as if she were envisioning heaven at the same time. She sure did seem to have a vision that I have not yet experienced. This “heaven talk” didn’t last long because it was about 2am, and I told them I would get in trouble for letting them stay up so late!! The last talk was just a few weeks ago. I was driving her to the Diva Dash and she was by herself in the backseat staring at the sky. I looked back and asked what she was thinking about. She just said “heaven.” She said, again, how cool she thinks it’s going to be. I told her I bet she will have her own suite equipped with a huge dance floor…she loved that idea. I cannot remember the exact conversation, although I wish I could because it was heart wrenching in a different kind of way. Something came up about when she thinks she will meet Jesus. I think I asked something along the lines of “Tori, when do you think you will meet Jesus?” She said something to the extent of “Well, I don’t know. It might be next year, or it might be in a long time. But it’s okay either way.” Again, those aren’t the exact words, but it is close. I just told her I like the idea of it being in a long time. I then shared the things her and I have planned to do in the future- one of those is helping kids with cancer together when she’s older! As quickly as the conversation started, it ended and onto the next topic we went. Probably something about the much anticipated Diva Dash!

I mentioned above that it’s all getting easier in a way, and it is…kind of. It’s easier to remain optimistic now that I truly know Tori's fighting spirit. It’s easier to sincerely ask Penny, “How are you doing,” and it is easier to hear the answers. It is much easier to go to bed at night when I am with Tori now because I know I don’t have to stay up rubbing her head all night…I can stop once I hear her breathing heavily, which is usually about two minutes after kissing her goodnight! It is easier to see the bones of her spine sticking out when she changes clothes because it is “normal” to me now. It’s easier to see her sad and quiet because I now realize it’s not her; it’s her low counts. It is easier to sit there with her and not say a word because I know in those moments of silence, Your spirit is so present. Some things are just easier. Understand though, that I never said it was easy, I just said it was easier. This is not only a learning experience for Tori, it is one for everyone who meets her because to know Tori is to love her.

God, I can rest assured that Tori is no doubt your child. She has “something special” about her that no one can seem to pinpoint, other than the fact You are living in her. Todd, Penny, and Hunter are a gift from You as well. While they have had their ups and downs, tears and shouts for help, they are an unbelievable family. I thank You for them as well, SO much. I learn a tremendous amount of information and gain so much wisdom every time I spend the night with them. Listening to their family, who I call my second family, talk and seeing them interact speaks volumes about what faith can do for a family. I continue to pray that You bless them beyond measure. They have praised You throughout this storm and they continue to glorify Your name.

Here come the thoughts I don't think about too much. This whole time I have known Tori, I have believed that you will heal her precious soul, and that you will let us keep her…especially for Penny and Todd. I am not stopping now, and never will, but I do have thoughts pop up that maybe it won’t end as I want it to. I am human, and I have doubts that maybe the tumor will come back, or maybe something else is going to happen where it will be evident that you want her back- that she could do more good leaving sooner rather than later. In the midst of these mixed thoughts, I know ultimately Your plan is far better than ours. Your meaning of "complete healing" could mean two totally different things, and I find peace in knowing that You already know what Tori's future holds. 

  

I have not written all of this “just because.” I wrote it because people have told me I should keep a journal about this journey. Here I am. I thought this would be a nice way to share the thoughts of my mind and the desires of my heart with those who follow Tori’s story through me. How grateful I am that You are using me in an ever so small way to use Tori to touch others that have never even met her. Thank goodness for Facebook! People who could not care less about my life and what I am doing always seem to know what Tori is doing and they “like” or comment on things I post about her. That brings me great joy. This life You have given me is not mine, it is Yours. I continue to pray that You use it for Your glory and honor. I continue to pray that You use me in whatever way You need to. I believe You have blessed my life with Tori and her family, not their lives with me. I also believe You have blessed other people’s lives through Tori using me…I actually know so, and I thank You for the people who have admitted that to me.

We will never know the answer to “Why did you choose her for this,” but we can rest assured the answer must be pretty significant and worth while.

Amen.

The Beginning

Here is a flashback of my first time seeing and meeting Tori.


It is not often that one meets another who will change their life in an instant. It's not familiar for humans today to meet someone who grabs their heart within a minute and never lets go, especially when that someone is a child. However, Tori did just that.

While standing back stage on the final night of the 2011 Miss Georgia pageant, my eyes were drawn to the stage. A stage that had immaculate stage sets, a wonderful singer, glitter and beads hanging from the scrim, many little girls living their dream as Miss Georgia Princesses, and an extra special little girl. Although all of these details were eye-catching, I couldn't help but stare at the center of the stage. There stood a little girl, so pale and weak, who was beaming with joy. The patches of no hair and short hair did not stop her from enjoying the moment. She had a smile like none other, and her presence was that of an angel. I knew within that very moment that God had orchestrated our paths to cross for a significant reason that was yet to be discovered. The production number was quickly over, and there I stood with tears in my eyes. I watched as this little girl was taken offstage to her mom and carried off into the dark.  I had to quickly gain my composure as the evening gown competition was approaching.I finished the evening gown portion and was now done. Everything else was left for the judges to decide. As I sat backstage in my small dressing room with five other contestants, waiting to go back on to see who made the top five, I still had such a strong feeling about this little girl. The answer was still a mystery that would not be solved until about a month or so later.


After searching and searching, I finally found Penny, the little girl's mom, on Facebook. I learned "the litte girl" was Tori. Penny told me all about Tori...diagnosed at 7 years old with Medulloblastoma, a highly malignant brain tumor. She had emergency surgery to remove the tumor, 6 weeks of radiation (which she was going through when I saw her at Miss Georgia), and was still receiving chemo treatments. We talked a few times, and then I surprisingly met Tori at Miss Columbus. As soon as I heard she was there I made sure she came to my dressing room! She watched me and "Miss Cassie" put on our makeup and get ready, and then she went back out into the audience with her mom. A few days later I got to meet them at the hospital, Children's Healthcare of Atlanta. I definitely over stayed my time (didn't want to leave)...but had so much fun! We talked and then made a hat with some supplies I had brought.


From that visit on, I knew we would grow to become extremely close. Penny was one of the most welcoming and genuine people I had ever met, and Tori was just an angel in herself. I remember wanting to see them everyday after that! Our relationship has only strengthened. I think of her as my little sister now, and I love her more than words can describe.


It was by NO coincidence that I had that "strong feeling" about her after just seeing  her on stage, and it was by a miracle I found Penny on Facebook. God works in miraculous ways if we are open to follow His lead.


Even more of a blessing from God is the instant connection I felt with Tori.
My motto for her: "I carry your heart, I carry it in mine."

                                             The very first time together in the hospital.

-Love in Christ,
Leighton