Category Archives: treatment

Big Things

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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

Two Doors Down

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January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.

Love,
Beth

Music to My Ears

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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

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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

A Blizzard in Tennessee

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December 7, 2010

No point in posting yesterday… just would have been another steroid rant. But today was a totally different matter. It snowed… Nashville-style, which translates into a ½ inch dusting of snow! School was cancelled the night before (yes, before it even started to snow) and we expected to wake to 2-4 inches. Jake woke up first and he and I pulled back his curtain to peer outside hopefully, in search of the much- anticipated snow… NOTHING! Tanner was really indignant.

But, by mid-morning it had started to snow and we started the long process of suiting up for a snow walk. After getting officially bundled up, we met Corinne and the gang over at the school next door. The kids found some ice to slide on and traipsed all over the field, our friends’ golden doodle romping happily in circles around us.

We threw sticks in the river, jumped on icy patches in the field until they cracked, piled up sticks and pretended we were making a fire and were joined by some other neighborhood friends. I expected Tanner to peter out early since she doesn’t always regulate her temperature very well and because she had just finished steroids and had felt terrible and seemed weak the day before. But, as always, she surprised me. We stayed out, in sub-30 temps for more than an hour. Jake actually begged to go home first, but everyone stopped on the way home to pepper the neighbors’ driveway with snow angels. Jake had never made a snow angel before and was delighted.

We came home and had hot chocolate with a LOT of marshmallows. Jake skipped the hot chocolate and just ate a cup of marshmallows. Boy, can we make the most of a ½ inch of snow in Tennessee!

I, believe it or not, appear to have pink eye. I’m so disgusted to be sick in some way again I just can’t tell you. My immune system is pitiful this year. I think it makes a serious case for the effects of stress on your body.

So, we’ve made it through the first rough week of the month. Each first week for the next year and 8 months will be difficult – Vincristine, steroids, methotrexate. But, the next three weeks should be easier, so that’s something to be thankful for.

No school again tomorrow. Ice. Not that we would have gone to school anyway! But, that means friends at home to play with.

Love,
Beth

My Monthly Steroid Rant

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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

Good Riddance 2009

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December 3, 2009

I was so happy to write “2010” on a check I wrote yesterday. 2009, for lack of a more literate description, sucked. I don’t want to say this year couldn’t be any worse than last (my realm of possibility has seriously changed), because it, of course, could be. But, I’m hoping things are on the upswing as they seem to be.

Tanner is doing a little better this month on the steroids. We’ve seen some emotional behavior, but they haven’t wiped her out completely like they sometimes do… yet. She’s still taking them through Wednesday morning, so we’ll see. Overall, she is feeling good and we are much encouraged that the doctors felt comfortable with her not returning to clinic for a whole month. That indicates they believe her counts to be pretty stable, something that can usually take many months to achieve. We’ve taken that as a sign that we can comfortably have a little more freedom, which is nice.

We had a very busy weekend focusing on trying to get all the decisions made for the renovations on the new house. It’s fun to have something else to think about, but still, in the back of my mind, I feel like I have to rush, rush, rush because you never know when a hospital trip might pop up. It’s an awful thing to have in the back of your mind, but it’s just the way it is.

Still, it feels for the first time in a long time like our lives are not being held completely hostage by cancer. We’re moving forward, which is the way it should be.

Jake moved forward tonight. He slept in a bed for the first time instead of his crib. We bought him a racecar bed (he LOVES racecars) and he was so excited. It’s easy to forget about the “other child” in this situation. In fact, I forgot to take him to a birthday party on Saturday. I feel terrible. But tonight… he had his moment and he did great.

Have I mentioned that Tanner’s hair is growing back? It started out as this little white peach fuzz, but has since darkened and grown to where she has a soft down covering her entire head. It’s amazing how fast it is coming in. I can’t keep my hands off of her head – she feels like a little downy duckling. She is really hoping it will be brown and curly! It does actually look darker, but there’s no word yet on the curls. See, even her hair is moving forward.

So far, 2010 feels different. It’s not that the dance with cancer is over by any means; I know it will go on for another year and a half and it will be very difficult, but I feel a little lighter on my feet now. I used to wake every morning and my first thought would be, my daughter has leukemia. Now, I sometimes wake up thinking something else – the new house, renovations, getting a new dog – good things.

Here’s to more good things for all of us this year.

Love,
Beth

Clinic Day # 26

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December 31, 2009

Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.

Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.

Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.

While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.

Love,
Beth

Resting

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December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!

Love,
Beth

Home from the ER

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December 29, 2009

Tanner and John stumbled in from the ER at 12:30 last night. Tanner’s chest x-ray’s were clear, so no pneumonia, thank God. Her counts were once again very elevated, indicating that she is fighting an infection. They gave her a broad spectrum antibiotic and sent them home.

This morning, she is fever free, but seems pretty tired. We’ll just take it easy today and hope all of us continue to recover. Boy, talk about one step forward, two steps back. It’s frustrating, to say the least.

Back to clinic on Thursday for her monthly dose of Vincristine and the start of a five-day steroid pulse. Joy.

Love,
Beth