The Birthday Girl

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.

Jake wanted to dress up for the fashion show!

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

Clinic Day #55 — Goodbye Dr. Mixon, Hello Carie

June 15, 2011

Today was our last day to see Dr. Mixon at clinic. Before we left the house, Tanner wrote him a little note that said, “I love you Dr. Mixon and I will miss you.” Then, she taped a squinkie to it and gave it to him with a big hug. He’s been such a big part of this journey for us that it was hard saying goodbye.

Jake, Tanner and Ali, petting Eli

BUT, we did have a great surprise! After having a little reunion in the lobby with Lily and Ali and parents, we found out that nurse Carie was working in the clinic today. Tanner was so happy! We got to catch up with her and show her pictures of Tanner as Sleeping Beauty. We also got to see Eli the three-legged dog. It was a great clinic day made even better with the knowledge that we have only one more of these clinic days and then we are done with them!

Tanner’s counts were good – too good, really. Her ANC was 2,600 so they raised her chemo a little bit, but not much. We’re short-timers after all.

This afternoon, we went to Sweet CeCe’s to say goodbye to a little girl that’s been in Tanner’s class the past two years and is moving tomorrow. She ended up coming home with us to spend the night – both Tanner’s and Stella Claire’s first sleepover. I’m writing this from Tanner’s room right now. They wouldn’t stop giggling and talking and it’s 10:30 so I’m trying to get them to sleep. Of course, I think Stella is asleep, but the kid who had chemo today is wide awake. Go figure.

Tanner finished theatre camp last week with a great show on Friday and found out today that she got the part she wanted in Joseph and the Technicolor Dreamcoat – she is one of the narrators. Jake’s still playing baseball and loving it and we have vacation bible school next week. It feels like summer and without the pressure of school, all of Tanner’s anxiety issues feel like a distant memory. We’re headed to the smoky mountains for a family vacation in a few weeks and just plan on having a relaxed and fun July before school starts again in early August and Tanner finishes her chemo on August 6. We’re in the homestretch and I can feel it. It finally feels real and reachable.

Love,
Beth

An Inspiring Night

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!

Aunt Beth, Aunt Kim and the kids

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

Two Years Down… Two Months to Go

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

Leave it to Us to Be Medically Complicated

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!

Working a hat on the runway

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

Discharged

May 2, 2011

We’re home. Which is a wonderful thing and more than we had hoped for when we left here yesterday morning. The psych team believes that she is suffering from traumatic stress and that the past few weeks have been a little too much for her. In addition, they thought the aftereffects of the steroids could have played a role as well.

They didn’t think her antidepressant was to blame, in fact, they raised her dosage. She was on such a low dose and had gotten such good results initially that they felt they were helping.

It was reassuring to know they didn’t see any signs of mental illness; just too much stress for our little girl to take. The doctor said she believes that Tanner’s age group has the hardest time dealing emotionally with cancer treatment. Older kids are able to express themselves better and relieve some stress by venting and using coping strategies. Younger kids don’t really understand the seriousness of their treatment and are spared some of the fear of dying or of relapse. Tanner’s age group is old enough to understand, but not really old enough to express themselves and use coping strategies. Tanner, in particular, does not really talk about having leukemia or what stresses her. She just doesn’t.

Doing her best Transformer impersonation while getting an EKG

The next couple of days may still be a little bumpy, but I think we’re better prepared to deal with it until the increased dosage of antidepressant might help relieve some of the tension for her.

Thank you so much for all the love and support you sent our way; it truly buoyed us when we were drowning. And huge thanks to Beth, Kim and Ann, who went above and beyond, as always.

Love,
Beth

In the Hospital

May 1, 2011

When Tanner was diagnosed with Leukemia, I thought it was going to be the most difficult day of my life. But, at least there was a concrete plan of how best to treat her. There were numbers and statistics and protocols based on years of research. And, I knew that nothing any of us had done caused it, and nothing we could have done would have prevented it.

Today is different; and in many ways, worse. Tanner is inpatient at Vanderbilt for a psych evaluation after two tough days that led us to the decision that she needed more help than we, or a visit to Allison, could provide. I don’t want to give a lot of details, because Tanner deserves some privacy as she struggles to deal with a disease that had me reduced to a day full of tears and xanax just last week. If it is more than I can bear sometimes, I think it is not unrealistic to expect that it is more than a 7-year-old can bear sometimes, too.

We are also concerned that her antidepressants could have backfired. Anti-depressants and kids are known to be tricky and the labels on her medicine warn that it can cause suicidal thoughts in children.

She has also had a very rough couple of weeks. I didn’t write about it, again to give her some space to deal with it without others knowing, but since she told her whole class about, I figure she wouldn’t mind. She began losing her hair again last month after her chemo. We were so blindsided; we had no idea that this could happen again. John found her crying on the slide at the playground and she told him that she had known for days that it was falling out, but thought we would think she was stupid for thinking that. Turns out, it happens sometimes. It seemed like an unimaginable cruelty to have it happen so close to the end for her. Like cancer was trying to get in it’s last licks. It stopped falling out after about two weeks and, although she is noticeably thin on top, she still has her hair and it has not happened again after this round of chemo. Still, it was incredibly difficult for her… for all of us, really.

Then, we had my colossal mistake… where I thought her LP a few weeks ago was the last one… only it wasn’t. I don’t think she can really get over thinking maybe I lied to her on purpose. I know I had a rough couple of days after that one and still haven’t really forgiven myself for it, but it is what it is and I can’t do anything to change it.

Then, this week, we sent Jake to my parents for some much needed special time. It’s hard being the “other kid;” the one who doesn’t have cancer. He needed that one on one attention from his grandparents, and I needed some time alone to regroup and reorganize. Unfortunately, in meeting our needs, I think we hurt Tanner. It was very clear to me during the week that she was so sad that she can’t go to her grandparents house alone for special time, and she knows it’s because of the leukemia. Balancing everyone’s needs in this case seemed precarious at best.

Allison believes that Tanner wanted to come to the hospital and did what it took to get herself here. She believes that Tanner’s world felt very out of control and that she feels safe here as an inpatient. I wouldn’t disagree with that, but I also think we could have a medicine issue as well. There is also a plethora of documented research linking traumatic stress disorder and post-traumatic stress disorder to kids who have cancer. I think Tanner definitely could fall into this category.

The psych team will come in the morning to evaluate her and, hopefully, we’ll know more then. This is, by far, one of the most tormenting things I have ever been through. To not feel like there will be a clear plan for how to deal with her issues. To feel like something we did, or didn’t do, could have exacerbated her problems. To know that we most certainly made some mistakes that may have hurt her. It is agonizing and I wouldn’t wish it on anyone.

I know that I can count on you all not to share this information with your children, who might tell other kids at school that Tanner is having these kinds of problems. Children can be cruel, even unwittingly so, and I would die to know that this blog had caused her any more pain than she is already in. The only reason I share this information is 1) because I know people care about Tanner and want to know how she is doing, and 2) because I feel strongly that the only way to end this *&^%$ing disease is for people to know how awful it really is and be moved to give of themselves to help.

I’ll write more when I know more. We are, as usual, blessed by the wonderful people who come running to our aid when we need it, and do not need anything at this point.

Love,
Beth

Clinic Day #53 — Counts Check

April 28, 2011

Okay, so yesterday was clinic day; I just got too tired to write about it. John took Tanner to clinic yesterday morning to give me a little break from the hospital scene. I wish we could give Tanner a break from it, but guess that’s not possible. Her neutraphil count was up quite a bit, at 2,200, but the steroids she had just come off of will artificially inflate neutraphils, so it’s hard to say what it will be once it comes back down, but Dr. Mixan felt good about it in general so we don’t have to go back for two more weeks.

John broke the news about Cari not being Tanner’s nurse any more in the car on the way there. She was very sad, but handled it as well as we could hope.

Hunting Easter Eggs is exhausting!

I’ve had a bit of a break this week. Jake is at my parents’ house and is coming home tomorrow. It’s given me three days by myself in the house for the whole time Tanner is at school. I really needed a little time to regroup and get some things done. It’s been nice to just go at a project without worrying about picking Jake up from school or being interrupted 1,000 times. Thanks to my parents for taking him; he’s having a ball playing golf and being spoiled. Nice for him to get a little break from the stress of our house as well. I miss him though, and am ready for him to come home.

Tanner and I went to a champagne toast at Flemings on Monday for the LLS Man and Woman of the Year Campaign. She didn’t really feel super as it was the last day of her 5-day steroid pulse, but we gamely went out and bought new dresses and headed downtown. I’ve been so proud of her at all these events; she’s really risen to the occasion and showed a lot of grace and poise at what have been very adult events. I think she understands how important this commitment is (and it doesn’t hurt that I’ve bought her a new dress for almost every event!).

People sometimes make the comment to me, “I don’t know how you all do it.” And, most of the time, I respond by saying, “You just put one foot in front of the other,” which is true. I mean, really, what choice do you have, really? But, I was reminded at the MWOY event the other night, that you really are carried through this journey by great friends, family and even people you don’t know who support you and love you through it.

There are 13 candidates for Man and Woman of the Year. Some of them have a personal connection to blood cancer and know first-hand how important it is to find a cure. Some are just caring people who have recognized a great cause and are giving enough of their time and energy to agree to take it on. Either way, they are supporting us and all the other families who have, unwillingly, embarked on the road to beating a blood cancer. Their commitment is an inspiration to me; it makes me realize we are not alone. There are lots of people who care and who recognize that this disease needs to be eradicated before it affects even one more family. To say we appreciate what they are doing is an understatement; frankly I don’t really know to thank them properly.

We spent Easter with our church family... and then John's family

Tanner has been feeling really good lately. The reduced chemo level she is on because of her low counts last month is evident. She’s only on 50% dosage at this point. Although I love that she’s feeling so good, it makes me nervous for her to just be on 50%. I assume if her levels are good next visit, they’ll raise her up to 75%. We’re delaying her next chemo a week to accommodate her Sleeping Beauty shows. She would have had chemo two days before her first show and been on steroids for all three shows. Dr. Mixan was nice enough to let us delay a week until the show is over and school is out so she won’t miss any of the end of school fun.

Speaking of Sleeping Beauty, if you want tickets but haven’t gotten them yet, you can order them by calling the Boilerroom Theatre at 794-7744.

Love,
Beth