Category Archives: treatment

Girl Time

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August 3, 2010

Tanner at Lookout Mountain

We miss Jake… we do. It’s so quiet and calm and girly around here. But, there’s something nice about it, too. It’s a little more grown up and less chaotic, and Tanner and I are soaking up our time together. Jake is in heaven at my parents’ house where they bought him his own set of golf clubs and take him to the golf course every day to hit balls on the range. Dad said he hit seventy-five balls the other night!

It has been so cute to watch Jake and Tanner miss each other these last few days. I forget how much time they have spent over the past year and, despite normal sibling squabbling, how close they are. Jake told my Mom and Dad that Tanner was his “fweind… and my sister.” And, today when we skyped him, he said, “when I get home I am going to give you a motorcycle… a purple one!”

Then, today, at quiet time, Tanner took a little create-a-book kit and wrote him a whole book that told him she loves him and that he is “the best brother” and he is going to be a race car driver when he grows up. It is adorable and something I will keep for him for the rest of his life.

I’m feeling stronger and better every day. I’m still turning my whole body to look to the right or left, but I’m driving and not in real pain anymore.

Yesterday, Tanner and I went to buy all her school supplies then laid on the sofa and watched movies. Today, we went to the movies with friends, had lunch out with Aunt Kim and bought some sneakers at the mall. After a rest at home, we did a late afternoon swim at the neighborhood pool (I sat, she swam) and ran into some friends. Tomorrow, Tanner has requested to go to Sweet and Sassy for a pedicure, but we may have to settle for a manicure. She has an open cut on her toe and soaking in one of those tubs might not be the best idea germ-wise.

She’s been feeling pretty good these days. Some sporadic stomach upset, but lots of energy and no leg pain. That will all change next week. Wednesday is dreaded Lumbar Puncture day. We are switching clinic days from Thursday to Wednesday to follow our doctor. Wednesday she will get her Vincristine through her port, start her five-day pulse of steroids and get methotrexate injected into her spinal column. She has already started worrying about it and is asking every day how many days until then. The next morning after all this chemo, she will have her first day of school. Yeah… it sucks, but what are you going to do? Hopefully, we can be proactive with the anti-nausea medicine this time and she won’t get so sick. I just think it seems unfair that it should be such a joy for her to be able to be there for the first day of school this year after missing the first seven months of school last year, but she may feel like crap and it will be ruined by this rotten disease… again. This, in a nutshell, is cancer… unfair on so many levels.

Jake comes home on Thursday with my parents who will stay a few days (Happy Anniversary tomorrow, Mom and Dad!) to help out before they go back home. Last chance for all things girly tomorrow…

Love,
Beth

No More

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August 1, 2010

I spent most of today alone in the house, resting. John took Tanner and John to Chattanooga, where he met my parents and handed Jake off for a couple of days of special Grandmom and Grandad time. He and Tanner then went to Lookout Mountain and did Rock City. They had a ball and came home very tired. But, we all miss our little man already.

As I was resting on the sofa watching movies, I was feeling a little sorry for myself. Oddly, because I feel pretty good, but my neck is still too sore for me to stay up very long without it starting to hurt; it feels much better when it is resting against a pillow or the sofa. But, because I feel good, I’m a little stir crazy and tired of looking at the inside of our house.

I found myself thinking, how many more days until I can get back to my normal routine? And, then I thought, how many times must Tanner have felt this way? How many times must she ask herself, “How many more days until I can get back to being normal?” How many more times will she have to go to clinic? How many more times will she have to let them put that needle in her chest? How many more times must she be terrified she won’t wake up from the sleepy milk? How many more times will she skip dinner on Friday night because of her Thursday night dose of methotrexate? How many more fun things must she miss because her counts are low? More, more, more…

How long must this journey feel to her? I can’t imagine. I know how long it feels to me and I’m only sitting on the sidelines. Five days of neck pain has inspired me to feel sorry for myself. What would fourteen months of chemo do to me?

I’m going to try to remind myself how I feel today the next time I ask Tanner to suck it up and just take her chemo without complaining. She has every right to be sick of this. And, I’m going to stop telling her, just one more year. It’s not an inspiring comment.

Love,
Beth

All Went Very Well

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July 29, 2010

Back home from surgery. Went so well, I didn’t even have to stay all night. I’m feeling better than I thought I would, but still tired and in some pain.

Domino faithfully by my side, stealing all my bed space.

God Bless Vanderbilt Hospital. We often wondered if the adult hospital was a wonderful as the Children’s hospital… it is. And Dr. Netterville, the director of head and neck center, who did my surgery, is awesome.

Thanks, as always, to all our wonderful friends and family who rally round when we need them. Love you all.

Love,
Beth

A Quick Update

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July 27, 2010

Jake hid in the garage during the shaving cream fight

Sorry it’s been a while since I last posted. A few of you… ahem… (you know who you are) have gently reminded me I have been slacking a little. As my friend Ashley said, though, when I don’t post for a while, it usually means everything is great.

It is. Great, I mean. We’ve been busy enjoying the end of summer before school starts in a few weeks. I’m having that thyroid surgery tomorrow, so summer is pretty much over for me and I’ve been trying to squeeze in the last little bit of time with the kids before I’m out of commission for a little while.

So, here’s the short story about the last week or so: We had water day in the cul-de-sac… slip n’ slide, water balloons, shaving cream fights, etc. We’ve checked a few items off our family summer fun wish list like making homemade ice cream and swimming at night with the lights on in the pool. Tanner’s in dance camp this week which will culminate in a show that neither John nor I will be able to see, but Aunt Beth and E. and Jake will attend. And, other fun summer stuff like bike riding, swimming and throwing rocks in the creek.

So, surgery for me in the early a.m. and I probably won’t post for a few days until I can be sure that my posts will be coherent (pain meds and public forums do not mix). We are, as always, well taken care of by our family and friends. Our support network is nothing, if not efficient, by now.

Wish me luck.

Love,
Beth

Clinic Day #37

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July 15, 2010

Hurray for counts above 1,000!!!! Finally!!! Tanner’s neutraphils were at 1,500 today, which means she can have salad and go to a restaurant again! She was very happy.

Mercifully, we had a pretty quick visit today and got her back to theater camp by noon. She is so excited about tomorrow’s performance. I keep trying to fend off the bad thoughts that keep creeping into my head when I remember that she was super excited last time as well and woke up sick that morning. I can’t shake the feeling that we are not quite home free yet. I’m trying to let hope win, though, and think positively.

Today at clinic, we were once again accompanied by Ms. Donna, who is videotaping Tanner’s clinic visits for a fundraising video for the hospital. It’s sort of like being on a reality show. Tanner had a little bit of a hard time acting like herself today with the camera there, but forgot about them long enough to sing “Day by Day” with the music therapist in the infusion room. She asked me to sing with her at first, then got confident and asked me to stop singing with her (lol) so she could take her act solo. She is singing that song in her performance tomorrow and she has a solo at the beginning of the song.

We had a sobering moment in the waiting room before being taken back. A little boy, maybe 5 years old, walked through the waiting room. His hair was gone and he had that familiar gray look kids get when they are taking a ton of chemo. He also had a feeding tube taped to his cheek and I detected a familiar little limp that told me the chemo was affecting his legs. Tanner watched him walk through and then looked at me and said, “That boy is taking everything.” I nodded and watched a look pass over her face that a 7-year-old shouldn’t have. In that fleeting moment, I knew she understood the seriousness of this cancer business, the gravity of the potential consequences of this disease and it’s treatment. I pulled her to me and hugged her tight with tears in my eyes. And then it was gone. She giggled and said, “Stop squeezing me!” The child was back.

Love,
Beth

Theatre Camp Redo

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July 14, 2010

This week has been theatre camp redo week. Tanner’s been attending camp every day and having at least as much fun as she did last time. She is singing and dancing her little heart out and we’re keeping our fingers crossed that she makes it to the performance on Friday this time.

Tomorrow is clinic day. A dose of Vincristine and the start of a five-day pulse of steroids. She’ll miss a good part of the day at camp tomorrow, but seeing as how she’s already been through camp week once before, she won’t miss anything too important. We’re hoping to get her back to camp by 1 pm, but heard clinic is packed tomorrow, so it might take a while.

Been spending some quality time with my little man this week. We’ve been to Jump Zone and to the pool, the dog park, and the library. I’m enjoying some special time with him. Jake gets overlooked in this whole process sometimes, not intentionally of course, but because sometimes you just have to give your time to the child who needs you most at that moment and that is often Tanner. Jake is so used to Tanner getting medical attention that he now asks for medicine so he can get in on what seems like (to him) some great attention from John and I. He doesn’t realize what that medicine does to Tanner. We keep sweet tarts to give to him when he wants some of that kind of attention for himself.

Went to my pre-op appointment this week for some minor surgery I’m having in a few weeks. I have a nodule on my thyroid that has tested negative for cancer in needle biopsies, but John and I agreed to just get it out. We’re not so big on taking chances with cancer these days. I’ll lose half my thyroid, but the other half should take up the slack and I should be fine, minus one largish lump in my throat, after all is said and done. Me having surgery is causing Tanner some minor stress. She keeps asking if I have cancer or if it is going to hurt and if I’m getting “sleepy milk” like she does.

Hoping to report good things from clinic tomorrow. Good neutraphils and hemoglobin levels. That’s what we look for. Just trying to make it through Friday’s performance and to the church Fish Fry that night (Bethlehem United Methodist — yummy!). We’ll keep you posted.

Love,
Beth

Clinic Day #36 — Ever So Slowly

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July 1, 2010

We went into clinic this morning for counts. I was expecting, after three weeks of being on 50% oral chemo dosage, for her counts to be well up above 1,000… but… no. 900. 900? That’s it? That’s only gaining 100 neutraphils per week… pretty slow, but I guess at least it’s in the right direction.

There is a theory that after a long time on chemo, the body develops bone marrow fatigue. As if to say, “Why should I bother to make any new cells, you’re just going to kill them?” Seems realistic to me.

So, we’re not quite ready to dine out in a restaurant again, but we’re not hibernating either. We’ll take it.

Been busy swimming a lot, playing with Domino and having playdates. Tanner’s friend, Meredith, came over yesterday for a “slumbover”… that’s when you have a friend over in the afternoon and they stay for dinner, you put on your pajamas and watch movies and they go home at bedtime. They had a super time.

Tanner got her birthday present a little early today (her birthday is July 8th). She wanted a new bike and we gave it to her today so she could ride it in the 4th of July parade in Franklin on Sunday. She opened up the garage door to go out and ride her scooter and just screamed in delight when she saw it… I love that.

Please pray for our little friend, Madelynn and her family. Madelynn is four and lives in our neighborhood and has ALL. She has just started maintenance and is experiencing the roller coaster that is the first months of this stage as they try to find the right dosage to keep her counts stable. Maintenance is such a dance; we’re still doing it. But, those first few months are very unstable. We were actually supposed to have a cookout with Madelynn’s family and Lily’s family last weekend and, ironically, had to cancel because Madelynn was in the hospital with low counts and a fever. Thankfully, it turned out to be a pretty benign virus and she got to come home pretty quickly. But, her counts continue to stay very low. I ran into her Mom, Amy, walking in the neighborhood early the other morning. We talked briefly about how disappointing it is to start maintenance… it seems like it should be so great, but it’s actually pretty rocky. It’s just a tough pill to swallow when you’ve waited for those first awful six months to be over.

Love,
Beth

You Get What You Need

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June 27, 2010

We thought we wanted a golden retriever… a goofy, playful, ball chasing, loveable family dog. But, as Cesar Millan, the Dog Whisperer, once said on his show, “You don’t get the dog you want, you get the dog you need.” (I wish I could do the accent; it sounds better with the accent.)

Domino has turned out to be exactly what we needed. He isn’t actually all that playful; I think being kept outside by himself for the first couple of years of his life didn’t teach him much about playing. He doesn’t even seem to notice when a ball bounces by his head. But, he is silly, which is actually more amusing. He is unbelievably adorable and super soft. He doesn’t really play with the kids, but his is unflappable when they play. He is the first dog I have ever seen sniff a tambourine when a child was shaking it… seriously. He is unfailingly gentle, completely bombproof and always ready for loving in any form. The kids can lay on him, poke his feet, pull his ears… it’s all good with him… he takes it as love, which is how it’s actually meant.

John ruining the dog

So, he may not be what we thought we wanted, but he is exactly what we needed. And, we have had a ball with him this weekend. The kids are taking turns having him on their beds at night while reading books… he loves it. Jake put his blanket over himself and Domino today and they lay on the floor and watched TV together.

If you or anyone you know is looking for a dog, I can’t recommend the Death Row Dogs program enough. You can find it at McMuttigans.com. The whole experience was wonderful, from meeting the inmates to getting our super dog. He is very well trained; he knows all his obedience commands and basic good manners, is house-trained and crate trained. He doesn’t jump on you, or rush at the door or chew stuff up; it’s been a wonderful way to get a dog. They get 25 dogs every three months and Domino was the 484th dog they have rescued from euthanization. People come from all over the country to get their dogs and we feel lucky to have found them. They had four dogs from Domino’s class that had not yet found a home, including a beautiful chocolate lab. Surely, someone we know needs a trained dog….

Too hot to do anything this week, but swim and maybe, go to the movies. We go back to the clinic on Thursday for a counts check and, hopefully, they’ll be up so we can get a little more freedom after that.

On a sad note, Ellie, the little girl I asked you to pray for last week, passed away the very next day after my post. I don’t know what else to say about that, except to say cancer sucks.

Love,
Beth

1 Day to Domino

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June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.

Love,
Beth

Clinic Day #35

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June 17, 2010

Protected during treatment by Mr. Larry's St. Christpher medal

Tanner’s counts had just come up to 710 today from 650 last week, BUT, Dr. Mixon felt that given how good she feels and how great the rest of her numbers look, and the fact that it is summertime, that we should send her to Vacation Bible School next week – hallelujah!!!

So glad we didn’t have to disappoint her again. She is really excited about going and it will be Jake’s first time to go, so he is excited, too.

She got her dose of Vincristine today through her port and will start steroids tonight. It was a very smooth visit, but I am thoroughly tired anway.

Jake spent the day with Aunt Beth (thank God for Aunt Beth) and had a ball.

Now, just keep your fingers crossed she doesn’t get sick again.

Love,
Beth