Dr.’s appointment for Jake and Tanner today. Jake’s leg has suddenly started hurting. A year or so ago, he had the same thing happen which scared us to death because Tanner’s leukemia started with leg and back pain. It turned out to be toxic synovitis, which sounds worse than it is. It’s a virus that causes extra synovial fluid to build up in the hip and is treated with several weeks of ibuprofen. I think it’s back again. Tanner has oncology clinic today, which I was feeling really good about until I woke this morning to a Facebook post about the death of a beautiful 18-year-old that we met at a Churchill Mortgage picnic that doubled as a fundraiser for the Leukemia Society. This girl was flat out gorgeous, in remission and had a life about her that drew you to her. Since then, unbeknownest to me, she relapsed, had a bone marrow transplant and died. Leukemia is so cruel and unpredictable. I think lately I have been lulled by Tanner’s health into thinking this couldn’t happen to her. That the leukemia is gone for good. But, this girl was SO vibrant and beautiful… and it got her anyway. My heart is heavy and sad for her family today and terrified for mine.
December 24, 2011
Just a quick note before we start our day of Christmas cookie making, fudge delivering and attending children’s church to act out the Christmas story… to say Merry Christmas and I hope you all are having a wonderful season.
We’ve made Gingerbread houses with friends, sat on Santa’s lap numerous times, seen some movies and sang Christmas carols with Wynonna Judd at a Make-A-Wish event. See for yourself! She was on the Channel 2 News http://www.wkrn.com/story/16371389/wynonna-judd-performs-for-sick-children
We love you.
As promised, I have posted photos. Click through to see them.
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. 🙂 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.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 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.
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,
We passed our goal!!! Woot! Woot! As of this moment, Team Tanner stands at $10,404!!! Thank you so much and see you tomorrow night! We will have a VIP tent for passing $10,000, so even if you haven’t signed up to walk and get a wild hair… come join us!
Check out Tanner in the Tennessean today:
Team Tanner has really been picking up steam in our last few days. The big walk is on Friday night and our Team total stands at $8,450, just short of our goal of $10,000. We are so grateful to our friends and family for supporting us every year… we are truly blessed. There’s still time to donate and to sign up to walk. We have 28 people walking with us as of now — it’s a really fun and inspiring night. Click here to go to the Team Tanner page
Jake at the Yard Sale
It was LONG day at the yard sale yesterday, but the kids had fun selling Krispy Kremes and cokes and we made $332 for Team Tanner. Yay! Jake was so funny. He sold 4 dozen doughnuts and I don’t know how many cokes. Hilarious! Click on the blue text “Jake at the Yard Sale” to see him in action.
Our team total has jumped dramatically in the past few days, thanks to some generous people who donated and joined the team to walk and thanks to Act Too Players, Tanner’s theatre group. If you remember, they did a benefit for LLS and I collected all the checks from them the other day. It’s more than $1,700!!! Holy Moly! So proud of the teens who had the idea to use their gifts and talents to give back. They organized the show, wrote the script, choreographed the dances and ran the rehearsals. In addition, they held a silent auction and sold cupcakes that they baked themselves. So glad Tanner is a part of such an amazing group of kids. And, thanks to Sondra Morton for her leadership to this group.
Our team total, with the garage sale money, now stands at $5,867! Woot! Woot! We have 22 people walking with us so far. It’s a super fun event! Come walk with us! http://pages.lightthenight.org/tn/MidTN11/teamtanner
October 5, 2011
I feel like I’ve been off work for two years and have just gotten back to my very full desk! It’s amazing how much time it takes to get a healthy 8-year-old off to school, soccer, cheerleading and rehearsal! It’s so wonderful that Tanner’s able to do so many things now that her energy is returning, but it is somewhat hectic trying to get she and Jake everywhere they need to be and still tackle homework, housework, and find a little time for fun! I’ll take this schedule any day, though; it’s much more fun than hospital stays and late night ER visits.
Tanner is looking and feeling better and better every day. The puffiness from the long-term steroids has finally resided and you can once again see her little pointy chin that shapes her pretty, petite face. The hair that she lost in the last six months is growing back and she has little wisps all over that hint at the beautiful head of hair she will have soon. The excema she had developed has all but gone away and her face has gotten a little pink to it. As my mother said last week, “She looks like Tanner again.”
She’s down to just two medicines taken at bedtime, one of which is a prophylactic antibiotic which I think they will take her off of at the next clinic visit. That leaves us with just her antidepressant, which I think we will have to continue for a little while. The demons may have left her body, but they definitely still linger in her mind.
Poor little Jake has gotten where is terrified to be in a room by himself. Our new therapist, Amy, believes now that some of the stress has left the house, he is starting to show some of the fear he has felt for the past several years. Even a 4-year-old knows when something is serious; and I think the fear in our house has been palpable.
Little by little, though, I am having days where I don’t really think about leukemia, or at least it’s not in the forefront of my thinking. I think we are all getting there.
We’re working on big things over here at the Page house! Saturday is our Team Tanner garage sale. Our neighborhood, Sullivan Farms in Franklin, is having a neighborhood garage sale on Friday and Saturday from 7 am until 2 pm. I spent the better part of today knee deep in our storage shed ridding ourselves of some great stuff we just don’t need anymore. Add to that three laundry baskets full of books I culled from Jake and Tanner’s impressive collection, some toys, kid’s clothes and some furniture and we are hoping for a great turnout! Tanner and Jake will be selling Krispy Kreme’s and cokes on the corner to add to our kitty.
Light the Night is just 10 days away and Team Tanner is currently in 5th place among the family and friends teams at $3,300. Our goal is $10,000. While I don’t expect to beat out Blake Shelton’s team, I do think we can improve our rankings! I assured the Tennessean reporter who called today to do a follow-up on Tanner from the article they ran last year, that we had a last minute donor bunch, but that they could be counted on to do great things!!! Hint, hint! (To donate, go to http://pages.lightthenight.org/tn/MidTN11/teamtanner)
Seriously, if you have thought about coming to walk with us, please do! I have participated in many fundraising walks and this one takes the cake. Fireworks, lighted balloons and the downtown Nashville skyline make it a really memorable event. If we raise $10,000, we get our own VIP tent and two attendants to get us T-shirts and balloons so we don’t have to stand in line. Last year, we had barbecue in the tent, but this year, we will get… wait for it…. Krispy Kremes!!! If that doesn’t make you want to walk, I don’t know what will!
The day after Light the Night, in celebration of all that we have been through as a family over the past few years, the Pages are headed to…. Disney World!!! It won’t be quite the same as last year without that Make-A-Wish button, but I’ll wait in line any day rather than be one of the families whose child has a “life threatening illness.” We do get to visit Give Kids the World Village any time we are in Disney. It’s the village just for wish kids where we stayed last year and it is truly a magical place. The kids want to go to one of the parties they have there every night.
Watch for Tanner to be in the Tennessean in the next few days (you can see the article from last year at http://www.tanner.celiamusic.net/files/2010/10/LLS_Tennessean_Oct.-6.pdf).
September 29, 2011
Last night couldn’t have been much better. After struggling so long and living through so much, we finally got to celebrate and take some time to thank everyone who had helped us along the way. It was truly a celebration.
It was the perfect mix of neighbors, family, old friends, new friends, church members, Leukemia and Lymphoma Society friends and work friends.
We skated, did the limbo, ate pizza, played video games and even had a foot race. It was a really fun night.
We can’t thank those who came enough. But, still, there are so many who couldn’t make it who have been so important in our journey. If everyone that has helped and supported us in the past two years had come, I don’t think the skating rink could have held us!
We will never be able repay the kindnesses people have shard with us, but we promise to pay it forward.
Link through to see photos of the event https://www.facebook.com/media/set/?set=a.2476309435491.239628.1485121797&l=2fe3271e3a&type=1