9th Birthday...

I want to start off with apologizing for the extremely delayed update on this blog. I have been frequently updating my Miss Georgia blog (missga2012.blogspot.com), so this one has taken a back seat due to my busy schedule. 

I do not have near as much time as I would like to write a ten page update on Tori and our journey together, but for the few minutes I have, here is some information about my precious angel, little sister, and Mini Miss Georgia...

1) Tori is almost nine years old! It is remarkable/scary how fast time flies. It feels like just yesterday she was saying she was seven years old. Even more recent memories are of me attending her eighth birthday as Miss Capital City (my local title before winning Miss Georgia). While Tori was getting chemo one hospital stay, and with me in her bed, I remember so clearly Penny looking at me with tears in her eyes saying, "I want this to be the BEST birthday Tori has ever had."Birthdays truly take on a whole new meaning when the "C word" is involved. Thanks be to God, Tori is still here and healthy for her ninth birthday. She is even waiting to have her birthday party three weeks after the actual date just so I can attend. My schedule is nonstop from here until the day I leave for Miss America 2013 (January 3), but I had one day where I could make it for her birthday. With no hesitation, Tori chose December 8th. This still touches the core of my being: an eight year old who is willing to have her birthday three weeks late just so I can come. How special is that?

2) Tori is really enjoying school and dance. After more than a year of not going to school, hardly seeing her friends, and not being able to do anything active, she is soaking it all up. It was a much harder transition than expected for Tori and her family: having to get back on a normal sleeping schedule, building her stamina to get through a whole day, getting weight back on her, etc. Her memory isn't as sharp as it once was because of radiation treatments, but as Tori always does, she is fighting through and making As and Bs! To brag a little, I also like to claim I am the reason Tori is in dance classes, haha. ;-) When I first met her she was VERY into competitive cheerleading and only wanted to take hip-hop classes if she was going to dance. Well now, more than a year later and after a lot of persuading, she adores ballet and lyrical: the two types of dance I wanted her to try. She is so extremely talented in both and picking up the technique very quickly. 

3) Many of you ask what her life looks like "after treatment." I encourage you to read the previous blog post for a longer explanation, but here is a short answer. Tori gets MRIs every three months to monitor whether or not the tumor is going to return. IF it does, her oncologist thinks it will be between the 12-15 month mark from her last chemo therapy treatment (summer and fall of 2013). With that being said, we just never know. Her parents decided to leave her port access (where they draw blood/ administer medicine) in for another year, but it causes no harm to Tori...just a bump on her chest where it sticks out. She said if she can make it a year with her port and no hair, she can surely make it another year with her port and WITH hair! Leave it up to her to keep everything in perspective. 

4) I have uploaded some recent pictures of Tori (and her new hairdo). Please continue to keep Tori and her family in your constant prayers. Once diagnosed with cancer, life is never like it was. You have to get used to the "new normal." I continue to praise my Heavenly Father for our relationship; for bringing Tori in my life right when He did; and for her willingness to fight through this all with a smile on her face.

-Love in Christ,

Leighton

Delayed update and Miss Georgia...

WOW! It has been a whirlwind since my last entry. I have so much to update everyone on pertaining to Tori, and simply not enough time. So for now, I have added the most important facts about her life, treatment, future, and random details.


Let's see, my last post was about a month and a half ago. Since then, Tori has gone to Hawaii for her Make A Wish Trip, lost the little amount of hair she had grown, had her last chemo treatment, had her first MRI appointment since being off chemo, finished 3rd grade (homeschool),  and she  recently became "Mini Miss Georgia!" Lots of events in her young little life. 


Hawaii was a blessing; a once in a lifetime opportunity, not only for Tori, but for her whole family. Cancer can either rip a family apart or bring them closer together. With the Svensons, it has brought them together. Do not get me wrong, it has been a struggle that I have witnessed first hand. But with their faith, diligence, and God's grace, they stuck together throughout this wild ride. Hawaii was a great time for them all to relax, reconnect, and process the year. I was beyond upset that I was not able to go to Hawaii with them like originally expected due to a date change, but it eventually paid off (details below)! I was able to go to Columbus and spend the night with Tori the day before she left for Hawaii. It helped me not miss her too much, kind of ;-)

                                                                Before she left for Hawaii
Jumping far ahead, and skipping many details/play dates, Tori is now done with chemo!! I planned a "No Mo Chemo" party for her at Children's Healthcare of Atlanta when she started her last in-patient round. The final round lasted about a month, and it sure took a toll on her frail little body. She was given a few different transfusions, as well as a shot to help with platelet and white blood cell production. Unfortunately the shot caused a lot of leg pain; however, it helped keep counts up for a little while longer than normal. Like expected, she was hospitalized during this last round. Tori and her mom actually came to spend two nights and three days in Atlanta. It was SO fun! They came up for the Capital City send-off party, and then stayed in Atlanta with us because Tori had a few doctor appointments. While here, Tori came with me on my errands to get ready for Miss Georgia 2012, and she even helped me pack. Oh, I cannot forget to mention she is the best closet organizer ever. She spent a good hour or more organizing my shoes for me. :-) We woke up the morning she was to leave, went to a pet boutique so they could buy some treats for her new puppy she was getting, and they were off to the hospital for her last day chemo round. Thanks be to God, she was in the perfect place at the perfect time. They quickly admitted Tori because she was so sick. She had no white blood cells, dangerously low counts, and a fever. She stayed in the hospital for about three-four days battling a virus. When all was clear and things were on the upswing, she finally returned home to many, many "No Mo Chemo" signs in her front yard. Like always, she fought hard, and she won. 

                                                                     SICK 



Jumping ahead even more- Miss Georgia week 2012, and the reason I can not be as upset about missing the Hawaii trip!!! For those who did not know, I was Miss Capital City 2012...a preliminary to Miss Georgia within the Miss America Organization. Jameson Kenerly was Miss Capital City's Outstanding Teen, and of course, Tori was Miss Capital City's princess. She was as much a part of the Capital City family as any queen has been (hints to her being at our send-off party!). Miss Georgia week was eight days, and Tori was there the whole time to support Jameson and me. She got to perform on-stage, see us during the week in rehearsals and at visitations, attend the Saturday luncheon, and announce herself onstage in her custom Sherri Hill gown. Big deal if you ask me! I know I also speak for Jameson when I say Tori kept our spirits up. Penny had given me the most special gift I have ever received about three weeks prior to Miss Georgia. It was some of Tori's original hair. I put it in a frame, along with a heart Tori made me, and that frame stayed on the bedside table right near my pillow every night during competition. The final night quickly came, and thanks be to our precious God, Jameson won the title of Miss Georgia's Outstanding Teen 2012. Tori was of course thrilled beyond belief! About two hours later (it still doesn't seem real to be typing this), I became Miss Georgia 2012. I have heard from a few on-lookers that Tori jumped to the ceiling with excitement, and cried with joy. 

                                                          PJ Party at Miss Georgia!

This leads me to something I have not shared with many people; only my family and my Capital City family. Back in March, Tori and I were in bed about to fall asleep. We were talking about Miss Georgia and what would happen if I was the person that God had chosen to win. After a few minutes of discussion, Tori got quiet and whispered, "Miss Leighton...will you please win Miss Georgia so I can feel like Miss Georgia too?" Although Tori is only eight years old, she is far beyond her years. In that little mind of hers, she knows that God's plan for her life might not keep her around as long as we would like for her to be here. So when she asked me this, I was stunned and speechless, yet filled with such a sense of peace. I simply whispered back, "I will do my best." With that, we prayed together and fell asleep. I held on and continue to hold on to this conversation.



All of that to say, I know Tori was just as excited as I was when my name was called for the title. When I say "we won Miss Georgia," I mean Tori and I won Miss Georgia. I would not have won if it weren't for her. She has helped develop my outlook on life, taught me how important it is to keep perspective, instilled in me a sense on compassion that I have never experienced before, given me a purpose far greater than myself and anything of this world, and she has given me a constant source of joy. Do not get me wrong, I was not a bad or troubled person before I met her, nor was I a "lost soul" searching for my path in life. Growing up with a special needs brother has given me so many positive attributes to pull on in different life circumstances, and he has taught me a long list of lessons as well! However, meeting Tori, a child who is literally in the fight for her life, and witnessing her never failing faith, helped develop me as a person, as a child of God, and as an ambassador for Jesus. So with  that, "we did it!" 
                      
I have now designated Tori as Mini Miss Georgia, rightfully so. She was on this journey with me before I won, and she will continue to be with me throughout my reign. Through Tori, I met another little girl fighting for her life. Ella! She has leukemia and is as cute as a button. I really, really want to get closer with Ella throughout this year, which I will do as time allows. Ella still has two years of treatment, so it is obvious as to why I want to be an important person in her life. Anything to help make these "road bumps" easier!      
                                                   
To finish up, here is a brief update about Tori's future and her life after treatment.
The brain tumor and radiation will cause brain damage at some point in her life. It has already started to show, but instead of dwelling on this fact, we will rejoice that she is still here with us. We will give thanks that the tumor did not cause more damage than it did because it could have been WAY worse. The radiation will also affect Tori's growth within the first year-three years. And again, it has already started showing it's truth. People often ask me, "what is Tori's prognosis?" The answer, "we have no earthly idea." The doctors don't know, no one knows. It is a long, painful, and questionable waiting game. If the tumor returns, it is said to be fatal. If the tumor doesn't return, the statistics of her living a normal life with no other cancer diagnoses are grim. However, statistics are statistics, and God is God. Penny sent me an eye-opening study that was done on patients with Medulloblastoma. It states "Fourteen of 47 patients (30%) experienced recurrent or progressive medulloblastoma. The median age at diagnosis was 9 years (range 5.8 to 15.9), and 71% (n=10) were male.Most patients had localized disease (M0, 78.6%), classic histology (78.6%) and gross total resection (92.9%) at initial diagnosis. The median time from diagnosis to recurrence was 18.0 months (range 3.6 – 62.6), and site of recurrence was metastatic in 86% (n=12). The median survival after relapse was 6.8 months (range 0.7 – 77.9); 3-year survival after relapse was 19%." 
Tori had localized disease, classic histology, and gross total resection. So, what this study means is not all that significant. It basically lets us know that Tori's tumor can come back even though it was fully removed in surgery, or it will not come back. At Tori's post-treatment checkup, Dr. Janss told Penny, Todd, and Tori that she can get back to her "normal" life as soon as she wants! She can go back to school, start dance (SO excited about this), and not have to be quite as careful as she had to be this past year. Penny is fully ready and capable of making sure Tori lives the best life possible. She might only have a year left, or she might have twenty. Only God knows, and that is okay.


On a more emotional note... 
While Penny and I have our thoughts about Tori's future, we will wait to see what God has in store. Our constant prayer is that His will be done, not ours. We will continue to praise Him in this storm, and wait on His will to be known. God has used Tori in remarkable ways this past year; she has brought a countless number of people to know Him, restored people's hope, brought smiles to those around her, been a living example of trust and joy, and grown so much as a young girl. I know with every ounce of my being that God is NOT done with Tori. He is just not. I think she impressed us all with her willingness to fight while giving Him the praise through it all. It is comforting to know that God was not the least bit surprised. He chose her for a reason. I believe God will either keep Tori's tumor or any other form of cancer from returning and give her the mightiest platform ever to speak about her testimony, or He will allow the tumor to come back so she can touch others in the exact way she did this past year. God might need to have Tori go through the journey again so He can get those who don't Him close to Him. Only He knows if she can handle it or not. In the meantime, I am specifically praying that He prepare all of us who know Tori for what is to come. If it is His will to bring her back home early, I can only pray for the huge amount of strength I will need...that all of us will need. Do not get me wrong, I still pray that He heal her on THIS side of heaven, but I also know God's ultimate healing sometimes means going home to the other side of heaven. Again, I pray His will be done. Nothing is known about her future and tomorrow is not promised to any of us, other than the facts that He will not give us more than we can handle, He knows the plans for each of our futures, and He has our best interests at heart. He knows what He is doing. :-)


For the next year or two, we will try to wait calmly for every MRI result, and every head ache will be a source of fear; however, we will celebrate Tori. We will celebrate her life and we will thank God for each and every day we get with her. I have had enough conversations with Tori to know that she can handle anything...and she is ready for whatever God throws at her. She's a mighty warrior.
A chapter has now closed, thanks be to God, and now a new chapter is beginning: The Waiting Game.


-Love in Christ,
Leighton 

Borrowed Angels

First of all, I was excited to see that my blog has been read in the US, Canada, and Europe so far!

This post isn't all about Tori today. It is simply about any child battling cancer. God has blessed me beyond measure this year with so many opportunities to connect with children who are fighting for their lives. With my career goal set to be a Pediatric Oncology Nurse Practitioner, I often times get asked "how are you going to do that?" or "why are you doing that?!" I truly believe we each have different gifts, different tools from God that are to be used to help others. Whether it is working in a hospice/hospital, school, or even in a retail store, there are abundant opportunities to change people's lives. 

I will never forget when I was a young child and I was always so incredibly drawn to children who were bald. At the time I knew they had "cancer," but I didn't fully grasp what exactly that meant. That is until a performance I did when I was twelve. I was casted as the Snow Queen in the seasonal "Nutcracker" performance and was beyond excited to dance my first big role. What I didn't know was that God had something so much bigger prepared for me that night than I could even imagine. Long story short, the performance went great and I loved every second I was on stage. After bows all the dancers rushed to the dressing room to get ready to go out to the lobby to visit people in the audience. As God would have it, right when I walked out into the lobby, there was a girl (about nine) who was bald and weak. While my family and friends were standing behind her waiting to see me, I could look at no one but her. I quickly walked up to her and began talking. She didn't say much, but what her mom said to me will always be a memory in my heart. Her mother simply took my hand and said "you were her favorite." I knew I surely wasn't her favorite because I was the best (which I certainly wasn't!), or because I had a white tutu on. I knew I was her favorite because I had prayed before performing that God dance through me to touch at least one person in the audience. He had chosen her that night. From that moment on, I knew I wanted to work with children who have been diagnosed with cancer; but I also knew it would probably never happen because at the time I was far more focused on my ballet career. God had other plans!

As I am now back home in Georgia and going to school, I volunteer at Children's Heathcare of Atlanta in the Aflac Oncology and Blood Disorder Clinic. I have met numerous children along this journey in my life, and each one has taught me something different. While hospital policy restricts me from using their real names, I have made up ones to fill in the blanks. There was Jeremy who had Leukemia (ALL) as well as downs syndrome. He taught me that no matter what life throws at you, there is always time to sit in bed and read. It may seem like a small lesson, but it's one I am still working on! Then there was Stephanie who had Leukemia (AML). She taught me in a quick few minutes that just because your parents don't care about your health, you still should. Jeffrey taught me that while we may be forced to do things in life we really and truly do not want to do, there is never a bad time to thank the person who is putting up with our attitude...even if it means we have to get more medicine. ;-) I can't forget about Bella. She is living proof that we don't need to be able to talk to impact others. It can be done with a genuine hug, or even a big smile and thumbs up. Sometimes actions speak louder than words- make that a lot of the time. Rachel had sickle cell disease as well as cancer. She also had a disorder that delayed her growth and speech. While tutoring her in math one morning, I realized what it looks like to keep trying, even when nothing makes sense at all. She would write letters as an answer to an arithmetic problem, or color a picture that was supposed to be solved with math answers. She knew she was wrong at one point, and she tried to fixed it all, but she never did stop working. I could go on and on about the small, yet so important, lessons I have learned through these "borrowed angels." 

For those who have read my blog, you have witnessed a few of the many lessons Tori has unknowingly taught me. They will continue to be revealed throughout this blog. The one that I am holding on to the most right now, with so many exciting things in my near future, is the lesson that we all must live our life for God and no one else. We must live for the satisfaction of Him, not for ourselves or others. She time and time again exemplifies this "rule" by her actions and words of faith. She accepts, as do I now, that we are not promised tomorrow. Tori wakes up everyday, makes sure she gets in a cute outfit that makes her feel whatever mood she's in (sweet, sassy, etc), and she goes out with a positive attitude, constantly thanking God for everything in life- big and small. 

With that, be open to those around you who might have only been put in your life for one reason...to teach you something. Those that we tend to try and change or push away, are most of the time those that are meant to change us. Accept that you aren't perfect and that you have a lot to learn, and never ever underestimate the power of a child. 

-Love in Christ,

Leighton

PS. I finally get to go spend the weekend with Tori in Columbus!! I will write a new post after I see her. :)

With all the bad, there is still so much good in this world....

This post is to just reflect on the good that is still out there. I feel that people are so quick to only focus on the bad; whether it's politics, relationships, illnesses, the economy, etc. Through Tori, I have witnessed the good from so many people....big and small.


To start the list off, we have Dan Uggla (Braves player). When I met Tori, I kept hearing all about "Mr. Dan," but since I wasn't a baseball person (YET!) I didn't know who he was. I just knew he brought a lot of joy to Tori. I had heard about him coming up to Tori at batting practice before a game and talking to her, I had heard about him taking pictures with her and signing Braves paraphernalia for her and Hunter, I had heard about the late night texts between the two of them, and I had heard of the Ipad he got for her. The list goes on of everything Mr. Dan was doing for Tori at the time I met her! Then, one night when I was at the hospital with her, him and Janette stopped by to say a quick hello. They had been out all day, and it was obviously late. But the fact that he still made a way to come visit her said a lot. He brought her roses and sat in the hospital bed with her while she asked a list of random questions she had. Dan continues to brighten her day with texts, prayers, and Braves tickets. He surely doesn't have to do any of this, but he chooses to...because there are still good people out there.

The next well known person is Lauren Alaina. In the midst of all her new fame and her career taking off, she met Tori at Children's Healthcare of Atlanta and recognized the special bond (doesn't everyone who meets Tori!?). She gave them her contact info without thinking twice about it, and has kept in close contact with Tori. Most recently (this is what I was referring to in the post below), Lauren had a concert with Alan Jackson in Columbus on May 5. She was oh so excited when she found out Penny and Tori could pick her up early in the morning and she could hang out with Tori all day. After spending an afternoon together at the house and going to the Farm House for lunch, it was time to get ready for the concert.

Before the concert, Lauren had invited Tori to sing "Georgia Peaches" with her on stage that night!! This was not only a big deal because thousands were watching, but because Lauren had the heart to share her spotlight with someone who is struggling. Here's a link to the YouTube video! http://www.youtube.com/watch?v=f_1UG5msJv8

                                    

The list goes on and on and on of people and organizations that have reached out to help Tori. From Cascade Hills church hosting the Diva Dash, to 93.3 the Joy FM praying for Tori on air, to the Capital City board welcoming Tori with open arms, people are still willing to give up some of themselves to help others who need it.

I have witnessed a man walk up to Tori at the hospital in Columbus and hand her a $5 dollar bill, and I have heard about people paying for their meals when at a restaurant. I have encountered tons of people who have complimented Tori on various things (from her outfits to dancing abilities), to people who have offered all sorts of services and items. 

At the Tim Tebow event this past weekend, people all around us were going out of their way for her! The younger guy sitting next to me gave up his aisle seat just so Tori could see Tim Tebow better. A lady at the church gathered six bibles for her to sit on so she could see better, and a man who had already come up and told her how beautiful she was went and found a pillow to put on top of the bibles. When she started getting tired and leaned her head on my shoulder, the couple behind us just patted me on the back. And yet when Tebow signed footballs were being given away to children only, our whole section was screaming "over here! over here!" while pointing at Tori...even other little kids who wanted her to have a football over themselves. Eventually a man came and put her on his shoulders and ran her to the front of they could see her better. Like I said, the list goes on and on.

God always uses His people for the better. If we can take the time to stop dwelling on our circumstances and look around, we will quickly realize just how much good there is, and hopefully what WE can do to spread the joy and helping hands. 

-Love in Christ,

Leighton

Update on the past weekends

It's been awhile since I have written a post....so bear with me while I try to stay on the same track while trying to remember everything that's happened!!


Two weekends ago I went back down to Columbus to visit and to celebrate being done with my Anatomy and Physiology lab final!! I got there on a Thursday and Tori, Mrs. Laura, and I went to a tennis match. Tori of course had on her big floppy hat and looked precious! She went into the match saying she might want to learn how to play tennis, but quickly changed her mind when she saw how confusing the scoring system was and how easy it is to get hurt. That night we went to dinner and then went back to her house to get some sleep. She has just been through round 8 of chemo, so it was her last night to receive fluids. It is now an unspoken tradition to have "girl talk" before we fall asleep. I was really tired that night, so when she said "Soooo, what are we goin' to talk about WayTay," I asked if we could say our prayers and dream about what we were going to talk about ;) She's too smart to let that one pass!! Since that wasn't an option, we just chatted for a few minutes and she fell asleep quickly. I woke up around 4am to a very quiet "Waytay. Waytay?" I thought it was a dream for a second, but then I opened my eyes to see Tori waiting for me to get up and take her to the bathroom with her hospital pole. It was one of those precious, quiet moments that I cherish.

On Friday morning I had to wake up early and go help with field day at a Columbus Elementary school. It was quite entertaining....the three legged race was my favorite (it's a miracle no one broke an ankle). After field day, I headed back to Tori's house and was really lazy all afternoon with Tori and Hunter. It was definitely nice to just hang out with them both and play mini corn hole turned monkey in the middle. Tori's friend came over that night to spend the night and I went to another tennis match. I didn't get home until REALLY late and I was in trouble! I walked into the house and the first thing Todd (Tori's dad) said was "You better get upstairs, you're in big trouble." I ran upstairs to find Tori in her big bed fighting to stay awake until I got home. Jillian was passed out on  the floor, but not Tori! She glared at me and said "Where have you been??" I explained why I was so late and had to ask for forgiveness :) I won't be doing that again, haha. We had some more "girl talk" and fell asleep. The next morning I woke up to Tori and Jillian staring at me...not sure why they would want to stare at such a lovely sight in the morning, but they were! We all hung out and got ready for lunch at the yummy Farm House. Unfortunately I had to head home after lunch, but it was definitely a fun weekend. It was a different kind of weekend since I wasn't with Tori the whole time I was in Columbus, but I enjoy every chance I get to spend with her...which is why I will never give up late night talks, or rubbing her head. Those are the things that mean the most to her, which in turn mean the most to me.


Jumping ahead a week, Tori and Penny drove up to Atlanta this past Friday. They came to my house and we had lunch, relaxed, talked, etc. Tori and I then got ready for the Tim Tebow event that was being held at 12Stone church that evening. We had both written him a letter and put them in the same envelope. Our mission and prayer was that Tim would receive the letters. We got to the church and I immediately started asking how we could get these letters to him. I knew meeting him was a FAR stretch, but I was praying the letters could somehow, someway get to Tim. After speaking with about six people, I finally spoke to a lady who could do something. She reassured us that she could not hand deliver the letters herself, but that she would get them as far as she could. Ten minutes later she came back to tell us that the letters got to him with no problem! She was told that Tim loves things like that. The actual event was so neat. Thanks to a very special and dear friend, Tori and I were able to sit very close to the stage and have awesome seats. The whole night was filled with listening to Tim and John Maxwell, as well as watching others go out of their way to help Tori and talk to her. Read the post above to see more of what I mean.

 Tori had been craving tacos all night, and when she craves something, you get it! We went to Cinco's after the event and ordered food to go....but it definitely took just as long to get it to go as it would have if we were seated. I didn't mind though because we were able to talk about what we got out of the night and what we both learned. Tori said her favorite part was when Tim was talking about his dilemma in choosing which college to attend. If you don't know the story, I am sure Google does ;) Tori just said that she really liked hearing Tim's story and that it proved to her that even if God is not showing you the way, He is leading you. This led into a conversation about how we both wish we could just call God sometimes, and Tori quickly said she would have him on speed dial!

Penny and Tori were supposed to spend the night that night, but due to Tori's never ending social calendar, they had to leave and get back to Columbus for a very special day! Since this post is already way too long, read the above post to see what this weekend had in store for Tori. ;-)


-Love in Christ,
Leighton

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