Counts Update

February 18, 2010

I didn’t actually run down the street screaming pulling my hair from the roots, but I wanted to. Tanner’s counts were up, but barely. She’s at 430… anything below 500 is considered severely neutrapenic and below 1000 is neutrapenic. Carie assured me it is normal to have this happen sometimes and that after all the chemo she has taken, sometimes it takes the body a while to recover from a counts hit. So, same old, same old restrictions and come back next week for her monthly clinic visit. Still no oral chemo, but they will give her a dose of vincristine and she will have a lumbar puncture with methotrexate next week, regardless.

Stick a fork in us.

Love,
Beth

Both Ends

January 27, 2010

Tonight, after Tanner’s lesson with Mrs. O’Hara, we decided to go to Chili’s to eat. John was at a work dinner and we were on our own. Tanner loves Chili’s; she’s always trying to connive some way to get us there to eat. So, we piled happily into the car and drove down the road for dinner.

While we were waiting for our food, Tanner kept saying how hungry she was. “When will our food be here?” she asked repeatedly. When it got there, it was piping hot and I began to stir Jake’s Mac n’ Cheese so it would cool off. I looked over at Tanner and asked if she needed help cutting her chicken, but she was staring off into space and didn’t respond. I watched her for a moment; she looked exhausted. “T… you okay?” I asked. “Fine,” she said. “I just need honey mustard.”

Between the time I asked the waitress for honey mustard and the time she brought it, I watched Tanner go downhill. The waitress set the honey mustard on the table and Tanner simply lay down on my coat in the booth without a word. I knew she couldn’t eat it. It was a moment lost.

Jake and I ate as quickly as we could, boxed Tanner’s food up and left without her ever eating a bite.

Now, it may seem ridiculous to care so much about one chicken dinner in the light of some of the truly awful things she has had to face over the past 8 months, but it’s just that it is such a metaphor for life with cancer. Get excited, look forward, anticipate… be disappointed. Watch everyone else around you get the thing you wanted so badly while you remember that’s it’s not for you… you have cancer.

She handled it better than I did, really. I cried about it later, which is so uncanny, because I almost never cry about cancer. It just seemed so unfair. Such a simple thing to want.

Anyway, the rest of the night went according to Murphy’s law. I carried Tanner into the house with her hand over her mouth, rushing to the bathroom, while Jake screamed from the car where it was parked in the driveway in the dark, “I’m cared! Mommy help!” Park Tanner in front of the toilet, run back out to get Jake. Set up Tanner on the sofa with a bucket and a towel. Frantically mix up some zofran to prevent nausea. Give Tanner the medicine while Jake hangs on to me screaming because the constipation he has been suffering from finally decides to give way. Clean up (nuff said). Carry Tanner to bed, dinnerless. Put Jake to bed, a pound or two lighter. Collapse.

Usually I only recognize the humor in this kind of situation in the retelling, but this was so ludicrous that I even started laughing in the midst of it. It wasn’t a cancer moment; it was just a motherhood moment, one that moms everywhere could appreciate.

Tomorrow is clinic day. John and I are anxious. Anxious that they will raise her chemo level. Anxious that she won’t get released to school. Anxious that she will get released to school and be exposed to all those germs.

Please pray for the right thing… whatever that may be.

Love,
Beth

Big Things

January 26, 2010

We spent Saturday night at one of our favorite places with some of our favorite people. We went to the circus!!! I LOVE the circus. I would go if I didn’t have kids and so would John. I had put it on our calendar a month or more before, but was struggling with whether it was safe to take Tanner into that crowd of people. It’s one thing to be at a restaurant with other people in the next booth, it’s another to sit with people who may or may not be healthy on all sides of you.

John’s company, Franklin American Mortgage Company, made the decision easy. They gave us their suite so we could go without worry and invite friends, too. We had an awesome time with two other families. It’s a big thing for Tanner to be able to do something like this… and Jake, too. We realized at the Circus that Jake has experienced a lot less than Tanner at the same age because he’s been sheltered due to our situation. He was super excited!!! We all laughed at him because he just kept jumping up and down and screaming at random moments because he was so happy.

Thursday night will be another big night. Two representatives from Make a Wish are coming to interview Tanner about her wish. She is so excited, but very conflicted. She really thought she wanted to go to Disney World, but now wants to maybe meet the cast of one of her favorite TV shows and ask to be in an episode. Decisions, decisions. I was hoping for Disney, but whatever she wants will be fine. I just want it to be special for her. It will be interesting to see what she comes up with.

And, Thursday morning is clinic day. It has, unbelievably, been a month since we have been to the hospital. Surreal. She will get a dose of Vincristine in her port and see the doctor. She also starts her monthly five-day steroid pulse.

We are hoping her counts have remained between 1,000 and 2,000 so that they don’t raise her chemo levels. No more chemo, please. Also, if her counts have remained steady, maybe they will clear her to go back to school.

John’s Mom, Ann, is coming with us to clinic on Thursday and then taking Tanner to the movies afterwards. They are going to spend the day together. Tanner is super excited.

Tanner continues to feel really good most of the time. She has periodic nausea and body pains and fatigues more easily than normal, but mostly seems like any six-year-old. Still, the chemo is there. She got sick yesterday morning for no apparent reason that I could figure except the chemo. Weird since Tanner only got sick twice during all the chemo she has received. But, a reminder that even in maintenance, the chemo is still there, still poisonous, still eating at her.

Still, I’ll take maintenance over the past six months any day. The freedom that it brings, the ability for Tanner to regain strength and stamina. The possibility of school and friends.

Big Things… Good Things… Hopeful Things.

Love,
Beth

Music to My Ears

January 19, 2010

“She is functioning completely normally for a six-year-old girl.”

Wow! I had thought Tanner’s physical strength had improved tremendously over the past month, but never dreamed the physical therapist would say she doesn’t need any therapy. She actually said she was looking for ways to challenge Tanner because her coordination, balance and strength were so good.

You really don’t have any idea how relieved I am. Not just because she didn’t need therapy, but because there is a part of me that has wondered in my darkest place, whether Tanner would ever be physically strong, the way she was before, again. There are so many potential long-term side effects to the medications that Tanner is taking. I don’t worry about them in the front of my mind; they are buried somewhere deep in the place I just can’t go. It’s too much to try to worry about what could happen; what does happen is tough enough to stomach. But, I personally know kids who have avascular necrosis (bone death) and mental processing problems due to the chemo, so I’m certainly aware of the potential problems. There’s also long-term metabolism issues, long term nerve damage, etc., etc., etc.

So, to remove one worry from the dark place makes a little more room for light and hope.

Tanner is strong. Her muscle tone is returning to her legs and arms. She no longer looks like she belongs in an ad for a starving child in a faraway country. She can skip and hop on one leg, walk on a balance beam backwards and do a sit up from upside down. Amazing. It’s wonderful not to think of her as being so fragile.

I have a hard time looking at other kids sometimes without feeling somewhat resentful. They are athletic and bouncy. They have a glow about them and color to their skin. It’s been hard to believe that Tanner would ever look like that again. She still has a way to go. She’s still very pale and low on stamina; I suspect she’ll be that way until August 6, 2011, when this journey will come to an end. But, she no longer looks sickly. And, that’s a relief.

Normal for a six-year-old child. Music to my ears.

Love,
Beth

What a Great Weekend

January 11, 2010

Tanner modeling my new coat

It was the most fun and normal-feeling weekend we have had in a long time. Saturday morning Tanner’s homebound teacher, Mrs. O’Hara came and they had a great session. Then, Jessica came and stayed with the kids until the afternoon while John and I went and did some new house shopping, picking light fixtures, carpet and tile. It was fun just tooling around together and I found that I didn’t think about cancer almost at all the whole time. Jessica and the kids made a card for her fiancé, Harley, who is serving in the marines overseas. Harley once sent Tanner a picture of himself with his marine haircut and Tanner with her leukemia do and said all the guys in his unit thought she looked cool. It hangs on our refrigerator and is one of the nicest things we have received (and that’s saying something!).

After John and I came back home, we all went to a friends’ house for tacos and fun. These are great friends who have been so kind to us. They go to our church and Tanner has known their daughter, Gracie, for a long time. They also have a son, Sam Ross, who is Jake’s age, so it made for an extra fun playdate as everyone had someone to play with. Their kids a similar energy levels to ours and we were treated to some crazy concerts and dance exhibitions.

Sunday, Tanner and I went to the mall together. She was feeling really bad when we left, with a lot of pain in her legs, but was determined to go. We took a jogging stroller with us so she could ride if her legs continued to hurt, but some painkiller seemed to fix the problem and she ended up pushing more than riding. We ate lunch in the foodcourt (another first since diagnosis) and did a little shopping then came home in time to go for another visit. Our friends Steve and Michelle were nice enough to let us come over and look at their beautiful kitchen to get some design ideas and the Tanner and Jake love to play with their girls. We finished the day with some Wii and everyone went to bed tired, but happy.

We also got some really great news… Tanner can go back to dance class. WOW! It will mean so much to her to be able to belong to something again. Not to mention how great it is for her legs.

So, we had a great weekend. Pretty normal, if you don’t count all the medication and the leg pain. Still, an idea that long term maintenance does equal more freedom, even if there is still more chemo involved than anyone would like.

Hope you had a good one, too.

Love,
Beth

My Monthly Steroid Rant

December 4, 2010

I wonder if a month will ever go by where I do not complain about steroids? I feel for those of you who read this blog; you must be saying to yourself, “Enough about those stupid steroids, how bad could they really be?” That’s probably what I would say if this were someone else’s blog and I were reading it.

But, I write here about what I know and about our daily life and I would be ignoring the elephant in the room if I didn’t say, once again, how much I hate steroids.

I came out of the bedroom this morning to my early birds, John and Tanner. Tanner makes fun of my “morning face” – eyes scrunched up against the light, shuffling walk, scowl. She and John spring out of bed at the crack of dawn each day, chipper and ready to go. But, this morning, I came out and Tanner said nothing. She didn’t even look up when I said good morning. When I made a spot for myself in the nest of blankets on the sofa, she just crawled silently into my lap and cried a little. Steroids. They’re back.

She did rally mid-morning and wanted to go to Target. She and Jake got Target gift cards from “Uncle” Larry and wanted to go spend them. Tanner wanted to use hers to buy a doll for her best friend Corinne who, unlike Tanner, did not ask for an American Doll for Christmas. Tanner wanted Corinne to be able to play dolls with her and was prepared to spend the entire amount on a doll for Corinne. When we got there, the dolls were on sale and she was able to buy herself something, too. As Corinne’s mom said, “She was being rewarded for her generous heart.” She’s so excited about giving the doll to Corinne.

Before we left the store, Tanner started not feeling well again. When we got home, she started to get out of the car and screamed in pain. Her leg was hurting from the steroids or the Vincristine – hard to tell which. I carried her into the house while she cried and said over and over again, “It hurts, it hurts, it hurts.” I put her on the sofa and went to the car to get our purchases when I heard a loud scream from inside the house – the kind that says someone is really hurt. I ran in and found her curled up on the hardwood floor, screaming. She had tried to go to the bathroom and fell on the way. Damn. I want to hold her and tell her it will go away, but I would be lying. We have to take the steroids for two more days, so it will likely get worse. So, I scoop her up carefully and take her to bathroom so she doesn’t have to walk and then I get her a dose of painkiller and tell her I hope it will help.

She spent most of the day in her room in bed watching TV. She just didn’t feel good. And, she won’t feel good again tomorrow. I told her I would take her to see Princess and the Frog after we dropped Jake off at school and she said, “I don’t think I’ll feel like it.”

We will repeat this cycle every month for another year and eight months. She will know that the pain and exhaustion will come back. She asked me today if she could use the “H” word to talk about steroids. I told her to let ‘er rip. “I hate steroids,” she screamed.

Throughout the day I would hear her get up and make her way slowly down the hall to the bathroom, wincing, crying out when it hurt particularly badly to walk. I would climb the stairs and scoop her up silently and carry her down the hall and wait for her so I could carry her back. There really isn’t anything I can say to make it better.

Recently, she asked me why the doctors made a medicine that made her feel so bad. “Why would they make chemo if it makes me so sick?” she said. The only answer to that question doesn’t seem appropriate for a six-year-old, but unfortunately, none of this is appropriate for a six-year-old. I told her that a long time ago, before they had chemo, people died from leukemia, so when they discovered chemo and realized that it could “fix” leukemia, people were happy to take it. They were happy to know that they would live. So, even though it makes people feel bad to take it, we should be thankful there is chemo at all. I tried to avoid the obvious, but as usual, nothing gets by Tanner. She said, very matter of factly, “Taking chemo is better than dying.”

So, I will probably continue to gripe monthly about these damn steroids. “Better than dying” just shouldn’t be good enough. I want to be grateful to these drugs, but oh, it is hard these five days of the month.

I know she will feel better in a few days, but it’s still so painful to watch her hurt and know we signed her up for it. Know that I administer the pill that makes her so sick.

Love,
Beth