July 8, 2011

I’m sitting on Tanner’s mattress, which is on the floor in the media room of the basement… next door to the room where five little girls are watching “Sharpay’s Fabulous Adventure” on the flat screen. They’re in sleeping bags, but so far, no one’s asleep at 11:18 pm. They’re quiet, though, so I think I’m winning the battle.

It was a raucous good time tonight. Seven eight-year-old girls threw water balloons, slid down the slide into a blow up pool, put on make-up and dresses and had a fashion show/talent show, toasted marshmallows and ate s’mores, smashed a piñata, caught fireflies, played musical chairs, ate hot dogs, ate cake, opened presents, set up a carnival and performed nearly all of Sleeping Beauty the musical. Whew! How do they get that much energy?

If you haven’t guessed, today is Tanner’s eighth birthday and despite all the fun and frivolity, the sobering thought crossed my mind to be thankful that she made it to eight at all.

She and I had a frank conversation two days ago on another milestone day… July 6. Exactly one month (31 days) until her last day of chemo. I pointed it out to her on the calendar and we counted the days, but she did it with no joy. I told myself that she just needed to get through next week’s LP (lumbar puncture) before she would get excited, but I suspected that she feels a little of what we feel – that ending chemo, although wonderful, is also a little scary. Chemo is a safety net of sorts. It keeps the cancer cells away.

Later, I asked her if she was excited about finishing and she, unconvincingly, said, “Yeah, sure.” I pushed her a little further and she seemed like she was trying to come up with the right answer to my question. I told her that I wasn’t trying to tell her how to feel about it, I was asking her to tell me how she really felt. She struggled so I prompted, “You seem nervous or scared.” She hesitated and answered, “Scared.”

“What are you scared of?” I asked. “I’m scared of the LP she said,” and then, in a very small voice she added, “and, that the leukemia will come back.” Uggghhh… the moment of truth I hoped not to have.

“It happens to some people… very few,” I admitted, “but I don’t think it will happen to you.”

“Why not me?” she asked. And, then we talked for a while about how her body had done just what the doctors thought it would all along the way. That her counts had gone down when they were supposed to and up when they were supposed to, and that she had spent some time sick in the hospital, but never for anything that was surprising to the doctors. And, since her body was doing just what the doctors expected, we should be able to expect that the leukemia will stay away, just like it’s supposed to.

“I hope that we will just walk away from all this, T, and never look back,” I said.

“You HOPE?” she said, accusingly.

“I believe,” I restated.

Then, we talked about worrying and how it just doesn’t change anything, but it robs you of joy. And, how John and I would let her know when there was something to worry about, but until then, she should just enjoy not having to take chemo and miss so much school and feeling better.

But, I know she will worry, and so will I. I’ll do my best to shove it to the background, but the reality is, it’s scary. It’s terrifying, if I’m being honest, to think that it could come back… I just don’t know how we would do this again.

So, it’s been an odd week. We’re celebrating wildly, but we’re worrying a little too. It’s kind of bittersweet.

As long as there are sleepover parties, though, to remind you that you are only young once, we can shove worry back to it’s proper place… in the background.

It’s now 11:43… and no one is asleep…

Love,
Beth

June 2, 2011

What a beautiful night to spread hope and inspire anyone who was witness to give of themselves. The 13 candidates for Man and Woman of the Year for the Leukemia and Lymphoma Society raised more than $350,000 in just 10 weeks!

About 350 people attended a lovely dinner and silent auction at the Doubletree Hotel. We had a wonderful table of 10 including the four of us, John’s Mom (Ann), Kim, Beth and two of my favorite former co-workers and dear friends, Robin and Rebecca who came as an wonderful surprise!

Records were set by both Woman of the Year runner up, Sherri McElhenney, who raised $58,000 and the 2011 Woman of the Year, Dawn Shafer, who raised over $80,000! Man of the Year went to Bill Knestrick, who raised $75,000. I know how much time and energy these folks put into this event and to making the connections and sticking their necks out to raise this kind of money and we so appreciate it.

Tanner and Jake did a great job, as did Boy of the Year, Jack Woods. They called Tanner and Jack to the stage and Jake leapt over the stage to take his rightful place clasping Tanner’s hand. They were poised and cute and full of personality (per usual) and we couldn’t have been more proud of them. LLS gave Tanner some acting lessons as a gift to thank her for her participation. How cool!

When I looked out at the audience filling such a big room at the Doubletree, I remembered that we are not alone. So many people are fighting to end cancer… it has to happen someday. We’ve met so many wonderful and dedicated people through the Leukemia and Lymphoma Society… the fight is in good hands.

Love,
Beth

June 1, 2011

I almost didn’t notice it; today marks two years since Tanner’s diagnosis in 2009. I felt almost guilty for a second… it’s such a profound date to forget. But, I think these days I’ve got my eye on the prize and nothing else. Two months to go. Looking forward is much more productive than dwelling on the past two years.

I apologize for not updating in so long. Sometimes, writing here feels like acknowledging cancer, and we’ve been too busy having fun to do that, mostly.

So much has happened… Sleeping Beauty, for one. Tanner was amazing; we knew she would be. During one part of the show when she was just standing there, fearlessly belting out a big note, John and I just held hands in the dark. Theatre seems like the one place in Tanner’s life that cancer has no hold on her. Princesses do NOT have cancer and watching her do her thing up on that stage, it was easy to believe she was just a normal little girl doing what she loves best, without a care in the world. It’s a safe haven for her and I’m glad she’s doing more this summer. She has theatre camp next week and starts on a summer play – Joseph and the Amazing Technicolor Dreamcoat.

Jake has started summer T-ball, although he is insists he is NOT using a T to hit. He has his first game this Saturday and will likely be unpleasantly surprised to see that T! He has had two practices and attacks the baseball the same way he attacks the soccer ball… with joyful enthusiasm.

School let out last week. I was glad. Tanner keeps up amazingly well, but lately, her body seems to be tiring and I’m glad her last few months of chemo will be during summer break. She ended up missing 36 days out of the school year and being late or excused early 19 times. Pretty good for a kid with cancer, but pretty significant as well. 36 days of school is seven whole weeks out of the school year. We were so proud of her, though. She more than kept up and is still ahead of grade level in most subjects.

Had Clinic Day # 54 last Friday. It was a week late so she didn’t have to get chemo the week of Sleeping Beauty. It was pretty uneventful and she’s doing pretty well. She’s been sleeping uncharacteristically late in the morning; averaging around 12 hours of sleep a night. And, we finished up her five-day steroid pulse today with the usual irritability, sadness and general fatigue. Same old, same old. We now have just two more IV chemo days left; one of which will also involve the dreaded lumbar puncture as well. I think we can, I think we can….

Headed to the grand finale of the Leukemia and Lymphoma Society’s Man and Woman of the Year Campaign tomorrow night. Everyone has new duds to wear and it should be a really great event.

Tanner woke up two mornings ago at 10:15 in the morning. She has NEVER slept even close to that late in her life! She came downstairs and said that a nightmare woke her up. When I asked her about it, she said that she dreamed the leukemia never went away and she had to take chemo forever and she had to get a feeding tube in her nose. Broke my heart to hear out loud what I pretty much knew she kept hidden in her mind and heart. No one needs to tell Tanner she could relapse for it to be her worst fear.

The same day, Jake said very thoughtfully, “Mom, what if I get leukemia?” I hesitated for a second, then asked, “You mean, what if you caught it from Tanner?” “Yes,” he said. I reassured him that you can’t catch leukemia from someone, hoping he understood. But then he wanted to know how Tanner got it. I told him that doctors don’t really know. It seemed a lousy answer… because it is. He surprised me when he pursued it further, asking, “Then, how do you know I won’t get it?” Indeed. I just lied and told him he was not getting leukemia. “Never?” he said. “Never, “ I lied.

I can’t wait for this to be over, but I am reminded always that it will be a long time before the wounds heal for all of us; some will probably never heal, but just scar over and be a permanent reminder of this time.

I’ll update tomorrow with some pictures of the MWOY grand finale.

Love,
Beth

May 11, 2011

Over the last couple of days, Jake has complained about his right leg hurting in his groin area. This morning he woke up and wouldn’t put any weight on it.

So, for the normal family, you would wonder if your child strained a muscle or maybe even had a hernia. For us, we wonder if he has leukemia… seriously.

The situation bore an eerie similarity to how Tanner came to be diagnosed with leukemia. She had recurring, come and go, back and leg pain, actually her right leg come to think of it.

This sparked a moment… well a few hours, if I’m being honest… of panic for John and I. I’m looking over him for bruises and petichae. I’m trying to figure out if he looks pale, taking his temperature, asking him endless questions about the little cough he had when he woke up. At one point, Jake said to me, “Why do you keep taking my temperature over and over, Mom.”

Needless to say, we went to our pediatrician, who is not only brilliant, but also a friend, and understood my terror right away. She offered to do bloodwork just to ease my mind, but we decided he had just pulled a groin muscle after examining him. But, she wanted us to get a hip x-ray just in case the joint had anything to do with the pain (did I mention she is brilliant?).

So, after picking up Tanner from early dismissal at school and stopping by the house for a few minutes, we went for said hip x-ray, which showed that the joint did indeed have everything to do with his pain. He has reactive synovitis, which is just a fancy way of saying he has some fluid build-up in his right hip joint. At this point, we believe the cause to be viral, which would probably explain why he has been so whiny for a week or so. He never had a fever or anything, but apparently, a virus can cause this kind of thing in about 3 percent of kids between 3 and 7 years of age, especially boys. We have a flair for the dramatic here at the Page house. We love to deal in long odds.

So, just ibuprofen for a week or so and keep an eye on him to be sure he doesn’t show signs of the fluid getting infected (fever, increasing pain). He’s doing fine, just walking with a little limp and crying out occasionally. Crazy, huh? That’s how we roll.

Tanner has been doing pretty well since her recent hospitalization. We had a week of hyperactivity due to some med changes, which was a little challenging, but we squeaked through with no major crises. She’s had a rough week at school; she’s still kind of agitated and emotional. We’re learning how to talk her down when she gets going so we don’t end up in a full-on meltdown. So far, it’s working. I think the next three months will be rocky.

God Bless Tanner’s teacher, Mrs. Sholar, and Moore Elementary for working so closely with us to help Tanner navigate school as well as possible during these times. They’ve also graciously agreed to let her stay there again next year, so we don’t have to worry about adapting to a new school and the end of treatment at the same time.

Tanner was the honorary guest at a very nice fashion show hosted by one of the Woman of the Year Candidates last weekend at Goodpasture Christian High School. The students were so sweet and had made a beautiful poster for her and some cards to bring home. She and a little friend she met there got to model on stage and they had such a good time. There were some really nice clothes and accessories for sale that were very reasonable and a portion of the proceeds went to LLS. Jan Dillard, the candidate, will be hosting another fashion show with the same clothing line at Richland Country Club on Thursday, May 19. If you want to come, you need to buy tickets by this Friday at https://www.facebook.com/event.php?eid=150807998320089.

I’m trying to post any MWOY events that I know about on the Friends of Tanner facebook page. I’m not soliciting donations for this event since you all are so generous to our Light the Night team in October. BUT, these folks are very resourceful and have put together some great events. So, if you see something you like, know the proceeds are going to a great cause and come on out!

Oh, and Tanner is going to be on the Channel 5 News tomorrow night at 10 pm for the story on Eli, the therapy dog that visits the oncology clinic. Eli is a Katrina survivor and has three legs and the kids love him. We’re so grateful to people like his owner and to my friend, Ashley, who brings Chili, her colossal golden doodle to clinic as well. They are a welcome distraction to the kids. You can watch a video teaser for the story here: https://www.facebook.com/video/video.php?v=217136378313987&oid=250799749909&comments

Hoping to get through the next couple of weeks until Sleeping Beauty and the end of school without any more drama. Cross your fingers.

Love,
Beth