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 ;-)
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.
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
Oh, Leighton, with tears in my eyes, I feel every word as if we're having this conversation on the couch side-by-side, and I echo each thought about this sweet baby girl. I have fallen in love with her, and this incredible family, and am so grateful for the opportunity (thru MAW) to be able to know them. God does work in mysterious ways, and He is a mighty God. I know He choses only the strongest of us to spread his message, and though Tori may be a "mini" to us, she is a powerful force for the Lord! I love the positive influence you are in her life. Sharing prayers with you now, and every day for this amazing little girl.
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Jennifer Simpson