Holding Onto the Joy

October 30, 2011

I know… I know. It’s been a long time. Someone nicely pointed out to me that I never posted photos of Light the Night. đŸ™‚ I did post them on Facebook and I guess I thought I posted them here as well, but didn’t. And, of course, we were at Disney for a week and I haven’t posted on that. So, I will definitely fill you in.

But, first let me say, it’s been a tough couple of weeks. While Tanner is doing incredibly well physically, she is really struggling emotionally. And, John, Jake and I are struggling with how to help her, and frankly, how to live with her. I won’t go into details, because I feel like that violates her privacy. But, I will say that we are finding ourselves all in a lot more pain that I thought we would be at this point.

I feel like we should be moving forward, but I think this may be the hardest part yet (at least for me). There is no roadmap for dealing with these issues. When Tanner got leukemia, it was, to say the least, terrifying. But, there was a plan… a plan that was backed with years of research and endorsed by brilliant doctors. There were really no choices to make; what choice do you have, really, but to follow the protocol? What we are dealing with now, has no concrete treatment plan. Even her antidepressants are somewhat trial and error.

It’s maddening. I’ve been terrified, really, because I thought things were getting worse and I worry a lot about all the drugs that have been injected into her central nervous system and what those drugs have done to her mind. Methotrexate is linked with ADHD, cognitive issues and impulse control. Tanner had 19 injections of methotrexate into her spinal fluid. No one can tell us whether this is effecting her, although it seems likely. And, if it is, how long it will last or whether it would be permanent.

I find myself hating cancer more than ever these days. It’s never-endingness (I deserve to make up my own word for this!) is so cruel and so exhausting. It is so excruciating to watch her struggle like this… to know how much pain she is in inside where no one can see. To know what her struggle is doing to Jake and to our family. It just hurts so much.

This week ended with lots of hope, though. Amy, our new therapist, has been such a Godsend. And, the psychiatric team at Vandy feel like we are on the right path. We increased Tanner’s antidepressant doseage, which has already helped some, and I feel now that maybe the last couple of rocky weeks may have partially been the result of stirring up emotions in her with the therapy. Kind of a two steps forward, one step back thing. Amy and the psychiatrist both reminded us that this is a journey of baby steps, but that we are moving forward.

And, we have definitely noticed some new things. For instance, Tanner told me other night, “I’m getting mad.” And, today she said she felt a little “grumpy and tired.” These seem like small things, but usually we just feel the wrath of these emotions. When she names the feelings, we can help her with them. Seems small, but it’s actually pretty big. Baby steps.

And, here is how I know we will get through this… how we know cancer will not win. Despite the overtones of all of this overshadowing our lives so heavily the past few weeks, there has been joy. We will never stop looking for the joy.

Which brings me to Light the Night and Disney.

Light the Night was uplifting, joyful, celebratory and inspirational, as always. Our final total was $11,155!!! We are so humbled by the support that all of our friends and family continue to give us in this effort to end blood cancers. We can’t thank you enough.

Tanner and Alli

This year, the event was set up like a street festival with tents surrounding a central area with a band and street performers. The Titans cheerleaders were painting faces and there were carnival games and inflatables. Team Tanner’s tent was right next to Survivors-R-Us, which was walking in honor of little Alli, who I have written about here before. We also saw the Racuglia’s, who are friends from clinic.

Sadly, the tent two down from us, Team Josh Benz, was walking in honor of a five-year-old boy from Dickson who was diagnosed with ALL in early September of this year and died just weeks later… just weeks later. Pretty amazing to have this memorial team come together in such a short time and rise like a phoenix from the ashes of their grief. They, too, raised more than $11,000. It was a sober reminder of why we were all there.

The next morning, the Pages rose slowly but surely and packed to head out to Disney. Despite some car troubles, we managed to squeeze in five days of Park fun, some blue-lipped swimming (it was a little chilly) and some great family memories. It really is the happiest place on earth.

My favorite moments from the week include:

Jake telling me that he was a kind of “shy” with Wolverine because he seemed, “a little bit real.”

Tanner and I repeating a joke that Alice in Wonderland told her over and over. (insert British accent here) “What is brown and sticky, but it’s not maple syrup? A stick! It’s brown and it’s sticky.”

Jake holding his arms up in the air while we rode Thunder Mountain.

How Tanner has never lost her sense of wonder at the characters, even though she knows there is a person inside the costume.

Spending a day at Give Kids the World Village (where all the Wish kids stay at Disney) as alumni. We played putt-putt, drove remote control boats, ate lunch and shared our story of hope with several families whose kids were still in treatment.

Jake telling me very bluntly, “I do not want to meet that girl,” when I asked if he wanted his picture made with Mary Poppins. LOL

Tomorrow is Halloween. Tanner is going to be Hermione from Harry Potter and Jake is a Mutant Ninja Turtle. I promise to post pictures!

Holding onto the Joy,

Beth

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