Peyton narced me out the minute we walked in the door. After Taylor’s viewing she and I went to get a bite to eat and then stopped by to see a friend who never fails to perk me up. I was feeling a little more put together by the time we got home and as soon as we got in the house she ran up to Pete and says:
“Taylor was sleeping! And she wouldn’t wake up! She was sleeping a long time. She wouldn’t wake up forever! And Mommy was really sad.”
I started to cry all over again when Pete hugged me, just letting the pain I was feeling creep out little by little. I tried not to do it at the viewing because I didn’t want to freak out the baby, but I needed to let those tears out.
The viewing was so emotional. Taylor looked beautiful with her Tampa Bay Lightning jersey and special stuffed animals lying beside her. Everywhere you looked were pictures of the family, Taylor and Jordan at all ages and a there was a video of family pictures that scrolled through their years of memories. Mary Kay, Cary and Jordan were so composed and peaceful, it was good to see them so together and calm. I can’t imagine how hard it must have been for them to be there receiving all the visitors and seeing all the tears, but they were smiling and sharing stories of the girls. Jordan was with her friends most of the time I saw her, she was smiling and talking, taking comfort in the love that surrounded her.
Taking Peyton to the viewing was sort of like taking the bull into the china shop. If you don’t know Mr. Bean…well, you’re missing out on one of life’s great funnies….if you are familiar with him, that was what she was like!…she was a mess. She kept trying to get the balloons they had all over the place, she knocked over a picture of Taylor in one of her attempts….she wanted to crawl on the table to smell the flowers (which was a fake arrangement anyway!)…she kept asking if we could change the channel to Nickelodeon (on the TV that was showing the video of the family pictures) and she ran from pew to pew rearranging the Kleenex boxes. I finally decided that she was going to somehow get us thrown out if we didn’t leave gracefully, so we made our goodbyes.
There were several people there that have been following Peyton’s story via this blog and came up to introduce themselves. It was nice to put faces with names of people who’ve left sweet, encouraging messages for us. Mary Kay had posted that Taylor loved butterflies, there were butterfly and dragonfly balloons everywhere and I had put Peyton in a sweet little white dress that has purple butterflies on it, a white headband with butterflies on it and her shoes always have butterflies on them.
I am just continuing to pray that Taylor has found her ultimate happiness in Heaven and that her family finds peace with their life without her.
Angela Powell and I had a long talk today about the reality of cancer. She was frustrated with the fact that the risk for secondary cancers is so high in pediatric leukemia patients. We talked about how the phrase “80% cure rate” is a lie. Cancer stinks and there is absolutely no way to pretty up. The phrase that I read all the time is that ALL leukemia is “the most common and most curable form of pediatric cancer”. That just means that the cure rates for other cancers reallllllllly stinks! She said “What’s the use of going through all this treatment if they’re just going to get cancer again anyway!” Oh do I understand her frustration and fear.
That 80% cure rate sounded so good following the words “Your child has cancer”. I held on to that with all my heart. 80% is good! 80% is doable! 80% is higher than most of the grades I got in math class throughout my school years and I still managed to graduate! We’ll take 80%!! Then I read and I get more information and I realized that 80% applies to kids who are between the ages of 2-10, who don’t get leukemia in their spinal fluid, who don’t have all the crazy qualifying genetic factors…and 80% is only good for a 10 year survival rate. That’s 80% who live 10 years past their diagnosis.
We’re finding out that because Peyton is a higher risk, she falls short of that 80%. Because of her spinal fluid being positive for leukemia at the time of diagnosis, she’s higher for the chance of relapse and secondary cancer. Because she has to have radiation on her brain and spine, she’s adding to that chance of secondary cancer and tumors.
When we were told there was an 80% cure rate for her type of cancer, I was joyous because I thought “Hey, we’ll cure it and then life can go back to normal”. I’m finding out that this is our normal. Life will never go back to what it was. She will never be the child she would have been without cancer. Her body will never be what it could have been. She may suffer growth issues, her pain could be temporary side effects of her medication, but it could also be permanent damage, she will always be at risk for cancers and have to be followed carefully throughout the rest of her life. Her mind won’t be what it could have been. She’ll probably loose a few IQ points, she may struggle at school with memory and cognitive issues, and she may have to work harder to do what other kids her age are doing naturally for the rest of her life.
But she will have a “rest of her life”.
The thing I keep telling myself and Peter, and Angela today, is that if we can’t get this cancer under control, there won’t be any worries of secondary cancers, relapse, learning issues, health issues, because there might not be a future.
We fight the cancer with every tool we have, we cope with the lasting effects the best we can and we have faith that God’s plan is in action in whatever He gives us to deal with. Just days, literally days, before our diagnosis, I told my best friend “I don’t know how those families do it. Those families with sick kids. I know I couldn’t do it.” I guess I was wrong because we are doing it. With family and friends encouraging and supporting us, with prayers buffering us daily, we’re going it.
SOOO, just for the records, folks, and in writing….”I just don’t know how those people do it…the ones who win the lottery and millions of dollars…I just don’t think I could handle it!”
Anyway.
For happier times, Peyton and I visited Rachael today at her “Teddy Bear Parade”. All the kindergarteners had dressed up bears with matching boxes that they pulled them around the playground. Now, let me just say this…if Kindergarteners planned the Macy’s Day Parade…..New York might never recover!! What started out as a nice organized parade ended up in mass chaos with boxes overturned, kids crying because their boxes weren’t moving right and ended in one huge clump of kids dragging boxes of overturned, badly mistreated bears. But it was absolutely precious to watch and the kids had a rocking good time showing off their boxes.
f.r.o.G…fully relying on God
—Anissa
ps….You must check out the photo tour of the 2007 Zachary Tucker Golf Scramble that went to benefit the Giving Hope Through Faith Foundation. There are great pictures of the event, but super specials ones of Peyton and some with me and her together throughout the slide show. Thank you so much to the GHTF group and special thanks to the Tucker family, the Wirth family, the Duckworth family, and the Brus family and Jim Young!
Also, this picture was emailed from the Temple Terrace Relay for Life event.
