Happy Birthday to Me

September 23, 2009 If you read Tanner Time this morning, or if you were one of the 50 or so people who sent me some kind of good wishes today, you know it is my birthday. Wow! What can I say? How do you thank a husband who does something like that? Or, friends who send so many kind wishes?

Today was full of the normal things… laundry, dishes, diapers… but every time I checked my email, I got a little burst of birthday cheer! Then, my two best friends, Beth and Kim, and Beth’s husband, Glenn, brought dinner and cake to the house. We ate, sang, and laughed, a lot. My husband and kids gave me a giant singing card, money to go shopping and a subscription to People Magazine. It was the perfect kind of birthday.

Friday, my parents are coming to take care of the kids while John and I spend Friday night in downtown Nashville. What a treat for everyone! The kids will love having Grandmom and Grandad here and John and I will get a date night and our first uninterrupted night of sleep in a long time. Yay! My birthday will just go on and on… I love that!

Thank you so much for all the kind and encouraging words today… I was blushing by noon. If I’m only half as strong as people think I am, I’m doing okay ☺. Actually, there is an Eleanor Roosevelt quote printed on the back of my Leukemia and Lymphoma Society “Relentless” T-shirt that I hope to live up to some day. “Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”

I know myself enough to know that I am not the kind of person who will never complain, not the kind of person who will always put others first, not the kind of person who is eternally positive. I complain often and definitely have my down moments. But, I am strong, to the point of being stubborn sometimes. Fortunately, I think this is one of the requirements of making it through a journey like this. I believe Tanner may have inherited some of this stubborn strength from me. She is so strong willed that she can drive you crazy sometimes. But, she can also kick some serious cancer butt.

Today, I was brushing Tanner’s hair and quite a bit fell out. I gathered it up and was on my way to throw it in the trash, when Jake head butted Tanner… with his face. Blood everywhere, screaming, busted lip… ugh. Later, when we returned from Tanner’s play therapy appointment, Tanner found the clump of hair on the couch where I had abandoned it. She held it up in two hands and said in a kooky voice, “Awwww.” Then, she threw it up in the air, laughing, and ran off to play race cars with Jake. Just in case all those kind words today went to my head, my daughter reminded me to be humble in the face of true strength.

Hope your day was great, too.

Love,
Beth

To My Wife On Her Birthday!

I know all of you read this blog to learn about Tanner and get a glimpse into Tanner’s world through Beth’s eyes as well as to support us in this place where we find ourselves – and for the prayers and well wishes I thank you from the bottom of my heart!  I mean it – we could never make it through this without you!  I do not write like her, nor do I express myself as she does – (She is really good at this thing)   But today I want to make my post – and it is for my wife.

Beth Page

Beth Page

Beth Brisbane Page you are amazing!   One of your home co-workers cries and wets his pants (Jake),  the other is fighting an ugly disease that does not allow for a normal life of school, parties, etc (the time most moms get breaks)  – I want you to know that I realize that in many ways  this is as difficult for you as it is for Tanner – the feelings of being trapped in a house, the feelings of not wanting to go to clinic one more time, the feelings of exhaustion when no one sleeps at night – trust me I realize!  I watch you (a social butterfly is an understatement) a past VP of a Public Relations firm – working everyday with polly pockets and dinosaur toys.  I know that this gets old –  and the pretending games and motorcycle races drive you almost to the place of insanity – I realize – I promise!  But Baby – let me stop today on your birthday and in front of all these witnesses and remind you why I married you. I married you because…

  • you are strong!  You remind me of that everyday when you get up and start a new day of exactly what you did yesterday – not knowing how Tanner will feel, or if she will say thank you for the grind you work through each day.
  • you are smart! You remind me everyday when you learn something new about the disease and find new things we can do to make Tanner’s treatment better and easier for her.
  • you never give up!  You are the mother tiger – you fight for Tanner – if it the school, the hospital, or even me (for all the readers – I am a germ-a-phobe – If it were up to me Tanner would be in a bubble) Beth gives Tanner a life!
  • you are balanced!  You remind me everyday by how you make the kids exercise, do school work, give to others, and play without screens in front of their faces.
  • you are beautiful!  You look great in Pajamas or Jogging Pants, Dresses or Jeans – I know Jake tells you that you are cute all the time – maybe I need to learn from my 2 year old son and tell you more often!
  • you are you – no matter what any one else thinks!  That is a  lesson we all could learn – I am not sure that you have ever followed the crowd a day in your life – I do believe, however,  you may have looked which way the crowd was going and chose the other route for fun!
  • I just love you and I am crazy about you!

This post was so easy to write – and I could have gone on and on and on – that is how I know I love you – these things just spilled out – my fingers could not even keep up with my thoughts  – you are as amazing as I knew you would be when I married you – you are committed to our kids – advocate, cheerleader, mommy, and more – so on the days when you can’t feel it – read it!

We all stop and wish you a Happy Birthday!  You are a great mom and wife – you are my soulmate and my friend – you are amazing

Happy Birthday!

Just a spinal tap

July 16, 2009 My friend Ashley laughed at me yesterday when I told her, “She just has a spinal tap with chemo tomorrow, so I think we should be able to play in the afternoon, no problem.” She said most people would be stressing about their kid having a spinal tap and would expect it to be an exhausting day.

It’s all in your perspective, though. When you’re on spinal tap number 5 within the past 6 weeks, it doesn’t seem like that big of a deal. We’re pros now at the whole process and Tanner is the biggest pro of all. I realized today, though, that I’ve been taking her attitude about going to clinic for granted. A little boy, about 4 or 5, cried today the whole time we were in the waiting room. His mother’s reaction told me that it wasn’t the first time and that she was used to him fussing. We heard him screaming later when we were in our exam room… I don’t know if he was getting his port accessed for an IV or whether something else painful was happening, but it made me realize what a trooper Tanner has been.

Had a good day at Clinic today. Her counts had rebounded really nicely. Her neutraphil count (big infection fighting white cells) was 2200, up from 1130 last week. It doesn’t really change what we are able to do too much, but makes us feel less anxious, at least, about her getting an infection.

Her energy level continues to astound me. She never took a nap today (aside from the “nap” she took while getting the spinal!) and we rode bikes and played on the playground in the afternoon. She even had energy for a monster tantrum after dinner (although, in retrospect, maybe all the activity today caused the tantrum… hmmm).

She has had quite a temper for the past week or so. The steroids are out of her system, so I can’t blame it on that, but wonder sometimes how angry I would be if this were happening to me. I wonder if I might be snapping at those around me, even though it wasn’t their fault… and I’m a grown-up (at least, most of the time). Even with Tanner’s considerable verbal skills, a six-year-old doesn’t have the maturity to express that anger appropriately. (Which is easy to say now that no one is screaming “No!” at me.)

I know that finding out there is yet another thing she is not allowed to do or another event she is missing is really frustrating to her. She will tell me how it makes her feel every once in a while and it breaks my heart. At the end of her birthday party, some of the other kids were talking about going to the mall playground to keep the party going. Tanner got all excited and started talking about going there and then to chik-fil-a afterwards. I reminded her that we can’t play on the mall playground, but promised her that we would pick up chik-fil-a and take it home. She burst into tears; I think she had felt so normal at her birthday party that she had forgotten she had limitations. I hated to be the one to remind her.

Then, two nights ago, we had a really special treat… Matthew West, his wife Emily and their two daughters, Lulu and Delaney, brought us dinner at the house. Tanner and I had just watched one of Matthew’s videos on demand the day before and here he was in our house. They were such nice people and we had a great time, just talking and sharing our kids. Tanner took Lulu, who is 3, right under her wing and led her all around the house. After a while, Matthew brought out his guitar and sang a few songs for us. What an amazing voice and his songs have such a great message. He was telling Tanner, who was listening raptly, that one of his songs was written about how God helps when things are hard and said to Tanner that she has to be brave and strong and has been through lots of difficult things. Tanner piped up and said, “There are a lot of things I’m not allowed to do now and it’s hard.” Then, she mustered up a half-smile and said, “But, it’s okay, though.” Clearly, it’s not.

Tanner & Lulu watching Matthew West sing

Tanner & Lulu watching Matthew West sing

We ended the visit with a prayer between the two families, with everyone holding hands. It was really special and we felt like we made new friends. We didn’t know them before that night; they are friends of a friend and just got interested in our family and wanted to help. Just another example of how blessed we are by people’s kindness.

Okay, so this post is long enough. Making up for no post last night. My friend Beth spent the night and we watched a movie, drank wine, giggled and stayed up too late, so no post, but great therapy.

Love,
Beth

Blessed Normalcy

Tanners B-Day Party 013July 13, 2009 I woke up this morning thinking how cruel it was that after feeling so good for the past week, Tanner was feeling very nauseated… the morning of her birthday party. But, 5 medicines and a bowl of cereal later, she was back in the game and the rest of the day was awesome!

The Build-a-bear party was the most normal experience we have had since Tanner was diagnosed. She was just a normal little girl having her 6th birthday party with 5 little giggling friends. They screamed, giggled, stuffed bears, sang the birthday song… all the normal stuff. She had a ball and forgot for a little while that she had leukemia.

Part of what made it so normal was the she didn’t need any help from us during the party. She has figured out a somewhat unorthodox, but effective method for getting herself up off the floor and was able to march around with everyone else without drawing any unusual attention to herself. Great fun!

Then, the piece de resistance… we took the training wheels back off the bike and rode the whole neighborhood. We stayed outside from 4:30 to 7 pm riding bikes, playing in the gravel, meeting neighbors and rolling in the grass. This is what I love to do with the kids. I love to be outside, to find unexpected friends and just let the fun happen. It snapped me out of a funk I had been in for days.

How amazing that Tanner is doing these things. Is there really chemo in that pill she is taking every day? How can she have this much energy? I think I had given up hope that she would be able to do these types of things for a long, long time.

We’re basking in it while we can.

Love,
Beth

Just Say “Yes” to Build-a-Bear

dec 08 015July 12, 2009 I stressed all last week about whether to change Tanner’s birthday party date. I had originally scheduled it for the 6th, but thinking we were going to have a break in chemo, moved it to the 13th so she would feel her best. Then, we figured out there really was no break, except a week without vincristine, and couldn’t decide what to do. When she felt so good last week, I kept thinking I should change it, assuming the new chemo treatments would knock her back and she would feel bad at her own birthday party.

Well, her party is tomorrow and she couldn’t feel better!!! The two doses of chemo she received last Thursday and the chemo pill she has been taking daily has yet to affect her, and if anything, I think her energy level has steadily increased all weekend. She has gone from napping two and three hours every day to not napping at all.

Her legs also grow stronger every day. We went to the playground today and she climbed a rock wall! Really. She still can’t run and has difficulty climbing stairs or getting herself up off the floor, but I do think these are just loss of muscle issues leftover from the steroids and from a month spent lying down. She definitely needs some physical therapy, but it’s amazing how much her willingness to play has made a difference.

It’s possible this oral daily chemo she is on may prove me wrong and have a cumulative effect on her which eventually drags her down, but with no more vincristine this month, I hope that she will continue to feel good.

Having said that, her counts were pretty borderline last week, so we’re feeling extra cautious about germs. It’s frustrating for her to feel so good, but still be so limited as to where we can go and what we can do.

Today, I felt like we had to say “no” to her over so many things. “No, you can’t come into the restaurant with Mommy; I’ll pick up the food and we’ll eat at home.” “No, we can’t play in the creek, there are germs in there that could make you sick.” “No, you can’t eat those grapes; you can only eat fruit we can peel.” “Don’t pick up that worm… it’s not good for you.” No. No. No. No. NO!

Ick! It’s not like you don’t say no enough as a parent. To have to say no to so many things is hard. Every time I do, I feel as if I am reminding her she is different… sick.

This morning as she struggled to get up the step from the patio to the back door, she turned and said, “Mom, why are some things that are so easy for some people so hard for me?” I explained about the chemo, but even as I said it seemed like a raw deal to me. She said, “We shouldn’t take something that is so bad for me.” It seems the irony of chemo isn’t lost on even a six-year-old.

But, tomorrow she should be able to do everything everyone else can. In fact, I would say she qualifies as a world champ at Build-a-bearing, cancer or not. There won’t be any stairs, any need to run or do any of the other things that set her apart from other kids. Just some of her best friends, some cute bears, a fairy cake and presents. She can handle that, no problem.

Love,
Beth

Birthday fun

July 9, 2009 Thanks so much for all the birthday wishes for Tanner. I held up a handful of birthday cards that came in the mail yesterday and commented that I had never seen so many birthday cards for one person. Tanner said, “A lot of people care about me.” Amen, sister.

We went yesterday morning to the Dollar Store at an off time when no one was there and let Tanner pick out her plates, cups, etc. for her Build-a-bear party on Monday. She’s inviting a few girlfriends and they’re opening the store early so she can go without exposure to any other kids. (Thank you Build-a-Bear) She’s super excited.

Then, last night we had a family party at the house with pizza and a Sundae bar. Tanner hasn’t been able to see her cousin, Mack, since she was diagnosed because the family has been passing a bug around. So, she was really excited and they had a really good time.

Today was our clinic day. We began the Consolidation phase of treatment today, which will last 4 weeks. Had a dose of vincristine (chemo) and an injection of another type of chemo into her spine. In addition, we started on 6-MP, which is an oral chemo she will take daily for the next month. It all went smoothly, although we narrowly missed not being able to start consolidation today because her neutraphil count was very close. It needs to be above 1000 to start and Tanner’s was 1030. Squeak!

So far, so good with this chemo. She came home and watched a movie while she ate, played on the computer with Jake for a while and then we all went outside to ride bikes for a while. She did just fine on the bike. Needed a little push up the hills and to get started, but otherwise did fine. I so, so hope that this dose of vincristine doesn’t set her leg strength back. She’s gaining so much every day and it’s so normalizing.

Special thanks to my Bunco girls tonight for getting me out of the house for a good time. Good girlfriends are good therapy. Also, thanks to my mother-in-law who came again this week so I can get out of the house, spend some time with Jake and have some help. I’m lucky to be part of such a loving family.

Here’s to more days of birthday fun!

Beth

the bottomless pit

Good grief!!!  You have never seen a child eat until you have seen one on high dosage steroids!  It is a full-time job just keeping her fed.  Two-and-a-half rice and cheese tacos, tortellini, chex mix, oranges, chex mix, two bagels with cream cheese, chex mix, etc., etc., etc.  She ate cheese nips at least three different times in the middle of the night last night.  She wakes up at night and talks about the food she will eat the next morning and begins planning her next meal before she even finishes the one she is eating.  Food, food, food.

Each day we get further away from the chemo she gains a little energy.  She still lays down most of the time and sleeps a lot, but she has more moments when she seems like herself.  Unfortunately, tomorrow is her last day before chemo on Tuesday.  We’ll try to make the most of it.

What I really can’t wait for is for the end of these steroids.  They have robbed us of our child.  She is lethargic and depressed then obstinate and agitated.  She isn’t my bubbly child.  She has no enthusiasm for anything.  Her birthday is in two weeks.  She told me today she didn’t want to have a birthday party at all… she didn’t care.  I have booked her a birthday party at build-a-bear during her week break between this first stage of chemo (induction) and the next (consolidation).  By the day of her party, she will have not had steroids or chemo for two weeks.  I’m hoping she’ll feel really good and change her mind.  Her doctor will allow us to do it during that week because typically white blood counts will rise without the chemo.  Build-a-bear has graciously agreed to let us in before the store opens at 9 am so that she is not in a crowd of kids (another of the doctor’s stipulations).  I want this to be special for her.  I don’t want it to be yet another thing we lost to leukemia.

So, we have 14 more days of steroids and then, maybe, we’ll get her back.  She’ll have to take the steroids again later, but I think for only 5 days out of the month.  Pray for our patience during the next two weeks so we can get through this.

Thank you all for your continued support.  We are lucky beyond description to have such friends and family.   We love you all.

Beth