Category Archives: good days

Independence Day

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July 5, 2009 If you told John and I a week ago that we could have had the kind of holiday weekend we have had, we never would have believed you. Our daughter is back! Instead of having to convince her to get off the couch, we have to convince her to take a nap.

What did we do this weekend? A better question would be what didn’t we do? Saturday morning we went swimming at the Whitler’s. If you didn’t see Tanner fall on the way to the pool or labor down the stairs, you would have never know there was anything wrong. In the water, she is her old swimming self. Flips under water, swimming to the bottom for torpedoes Jake kept throwing into the pool, paddling across the deep end. She looked like any other kid. It was a moment of pure joy for John and I to watch her in an arena where she could match up to other kids.

Having said that, she was exhausted afterwards. I had to wake her 3 hours into a nap so we could go to a 4th of July cookout at the Adkins’ across the street. The original plan was to go over at 5:30 or so, then come home for a little while for a rest and then go back for fireworks. Apparently, that was not Tanner’s plan. We stayed straight through until almost 9 pm. They ate, played inside and outside, caught fireflies, ate freezer pops and did everything a kid should do at a cookout. Tanner was right there with the other kids. Sure she couldn’t jump or run to catch a firefly and she fell several times, but she hung in there and had a great time. Again, though, when she got tired, it was instant. She suddenly said, “Mom, can we go home now? Right now?” Kendall carried her across the street to the house. John and Jake had gone home earlier when Jake discovered that he did NOT like fireworks. “I not like that BOOM!” he said, with his little hands over his ears.

Sunday was the best day of all. We hung around and took it easy all morning… because… Roger Day was coming to our house for a private concert!!! If you don’t know who Roger Day is and you have kids (or grandkids), you should. He’s awesome. He’s a singer/songwriter that the kids love and the parents can actually enjoy as well. His lyrics are funny and clever, but the music is solid and his concerts are tons of fun. We’ve seen him a number of times and own all his Cds and his video. He plays all over the country, but lives right here in Franklin. You can check him out at www.rogerday.com. A million thanks to him for taking time out of his Sunday to help a little girl who can’t go to his concert this Thursday at Brentwood library (shameless plug). We always go to see him when he plays in town, but can’t anymore because of Tanner’s immune system. After he left, he actually drove all the way home and came back with a signed T-shirt for Tanner that he had forgotten to bring. Nice guy or what?

We invited a few friends over to sing and dance with us and had the best time. All the kids were dancing and doing all the special moves to “Mosquito Burrito” and “Roly Poly.” A physical therapist couldn’t have worked Tanner out any better. Roger played for nearly an hour and serenaded Tanner with his cool Happy Birthday song. She was thrilled. We’ll try to post some video to the site, if we can, to show what fun the kids had. The funniest part was when Roger came through the door and Tanner saw him. She walked to him, intending to throw her arms around his waist in a hug, but fell right before she got to him. Miraculously, she played it off as if she had meant to do it and threw her arms around his calves instead, saying, “You’re Awesome!” She never missed a beat.

After Roger left, Tanner went to Corinne’s house for Ms. Ashley’s famous homemade pizza. Ashley called at 6:30 to say that Tanner was going to fall asleep in her plate if I didn’t come get her. While she was there a tooth fell out, too. When I went to get her, she asked if I would carry her home and when I picked her up, she whispered in my ear, “Can we go straight to bed?” Which is exactly what we did. Exhausted, but happy.

In short, this weekend was better than we could have ever hoped for. I’m not so naïve as to think that there aren’t hard times ahead, but I’m just trying to live in this moment and not worry about what next week will be like. We’ll hang on to the memory of this weekend for a long time and bring it out when we need it to remind us of what is at the end of this long journey. It was the first time that I felt like we ruled the leukemia instead of it ruling us. We got the best of it and declared our independence from it, even if temporarily.

Happy Independence Day! Hope yours was even half what ours was.

Love,
Beth

Sleep… Blessed Sleep

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I find that the less I sleep, the more I realize how underrated it is. By yesterday afternoon, it had become my number one priority. Ironically, Tanner, who was awake with me until 1 am the night before, and had a virus to boot, didn’t seem tired at all. But, last night, for the first time in nearly a month, the whole family slept, peacefully and relatively uninterrupted for a good 10 hours or more. Tanner woke up to go to the bathroom twice, but didn’t eat at all or ask for any painkiller… both miracles and evidence that the steroids are leaving for real.

We see lots of evidence of the steroids’ retreat: a return of our happy, laughing little girl; less stomach aches, more sleeping and less eating. All wonderful things. We are so thankful. It is one thing to have someone tell you you’re little girl will come back to you after the steroids wear off, it is another thing to believe it. I’m glad it turned out to be true.

She laughed hysterically most of yesterday afternoon (maybe she was delirious), which was really good to hear. She made “driver’s licenses” for she and Jake out of business cards this morning and kept asking us to check them. Gladly. Can’t remember the last time she pretended anything.

Even the swelling seems to be going down in her face and stomach, which makes her a little more recognizable as Tanner.

Sadly, she realized last night that she will not be able to go to the Franklin 4th parade today. It’s been a tradition for us to decorate bikes with our neighbors and ride in the parade. She was crushed. We talked for a while about how long it would be until she could be among people again and she figured out that she wouldn’t be going to school in the fall. Again… crushed. She doesn’t want to go in halfway as the “new kid” and is afraid kids will make fun of her and call her names. We talked about it and decided that she would know many of the kids in her class from last year and that we would do all we could to be involved throughout the year so she wouldn’t feel like a “new kid.” She felt a little better and then had the idea that our friends could take pictures of the parade and she could look at them tonight. We saw our friends this morning and Tanner happily yelled to them to take pictures. Amazing. We are going to their house for a cookout tonight and fireworks, if we can take an afternoon nap so we can stay awake.

Special thanks to our friends the Whitlers who created and host this blog for me, and who brought us the most delicious dinner last night. Celia has written a song for Tanner and they sat on the couch and made some changes to it yesterday. Tanner laughed a lot and seemed pleased to have a song written about her. Celia is going to put a melody to the song and come sing it for Tanner. Truly priceless.

Speaking of singing, Tanner’s favorite kid’s singer, Roger Day, is going to do a private concert at our house soon. So excited. We have every CD he ever made and it is so kind of him to do this for her.

So, for all the things we can’t do, there are other really special things to take their place. And, as my Aunt Debbie once told me about something totally different, “It is a season of your life.” It applies here as well. In 6-9 months, we’ll be in maintenance, and although it will be no picnic, we should be able to have a more normal life. And, by then, my almost 6 year old will have taught me how to accept the things that life hands you with grace and a smile.

Great Day

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Well, we finally had a great day! I got to talk to my daughter today for hours. She was super for most of the day. For the first time since we have been home, she actually walked around the house without holding anyone’s hand or using her cane.

For hours, we each lay on a twin bed in her room giggling, talking, reading, crafting, making a Father’s Day card for John, and, of course, eating. It was like a slumber party during the day. She actually asked me to read to her several different times and declared “Chemo to the Rescue” her favorite book. She and I were up most of the night before with stomach problems and just general steroid-induced sleeplessness. I’ve missed her so much, I didn’t want the day to end. We’re hoping for another good day tomorrow before chemo on Tuesday.

We have 8 days left of this first stage of treatment. It probably would be daunting for Tanner to understand how much is left, but I’m going to privately celebrate any milestone I can. Not this Tuesday, but next, is our last day of “Induction.” Tanner’s chemo treatment will have four phases: Induction, Consolidation, Delayed Intensification and Maintenance. The first three phases are varying degrees of intense therapy and will last 6-9 months, depending upon how Tanner responds and what, if any, delays we experience due to infections, low blood counts, etc. The last phase, maintenance, lasts years and is much less intense. It will be just monthly chemo treatments and is when most kids’ hair begins to grow back and they can resume normal activities like school.

The end of this induction phase also marks our last day of this intense steroid treatment. The steroids return later, but never for 28 straight days. So many of her most annoying side effects are, I believe, due to the steroids right now. Abdominal cramps, her bloated face and stomach, her mood swings and crazy appetitie, sleeplessness. Even Tanner knows how many days of steroids are left and we are counting the days on the calendar.

Here’s to another good day tomorrow.

Beth

Night Owl

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After such a scary day yesterday, fully expecting Tanner to wake up so sick this morning, I was pleasantly suprised to find that she was not nearly as sick today as she was yesterday.  She still felt crummy — none of the stomach medicine seems to be helping the abdominal cramps and she is constantly dizzy and short of breath, probably due to the drop in her red blood cell count — but she was definitely more spunky than I expected.  She had some really good moments.

More puzzling, however, was how she was last night.  Awake much of the night, she was good natured, talkative and sometimes even giggly.  John and I have talked to the doctors about how much better she seems in the middle of the night and they don’t really have any explanation for it.  I did read that a side effect of the steroids is hypersensitivity to light, sound and motion, so perhaps the dark, quiet of the night is soothing.  For whatever reason, though, if you want to see the old Tanner, stop by at 3 a.m.  We’ll be awake, chatting about any number of things.

Most often, she talks about food at night (another one of the side effects listed for steroids is food obsession).  She’ll wake up talking about how John promised her a McGriddle and those “big tater tots” (aka hashbrowns) the next morning.  Or asking why, for the 100th time, she is not allowed to eat cheese popcorn (because the kernels can cause scratches in the intestines, which if you have a low platelet count, can cause internal bleeding).  She will often ask for food, and after I explain how I’m not cooking in the middle of the night, will settle for cheese nips or pretzel sticks.  Tonight, she actually ordered up her nighttime food before she fell asleep (cheetohs) and warned us not to eat them all while she was sleeping.  Anyway, these conversations are usually very funny (unless it’s the 6th time she’s woken you out of sleep to talk that night) and remind us our child has a huge, bubbly personality that is contagious.

Other nights, the questions are deeper.  This is when you find out what Tanner is really thinking about when she lays awake at night.  The other night, she asked me, “Mom, will I have still have cancer when I’m in the first grade?”  I try to be honest, but gentle in my responses, not telling her more than she needs to know, but not lying either.   Most often, the questions are about losing her hair, which so far is as thick and beautiful as ever.  “Mom, do you think there is hair on my pillow right now?”  “When will my hair fall out?”  “Will my hair grow back in time for school to start?” 

She told me today that it is embarrassing to have leukemia because people know your hair will fall out.  I almost wish hers would go ahead and come out so we could just get this part over with.  How do you explain to a five-year-old that losing her hair will not change who she is, or make people love her any less?  I think the anticipation will be so much worse than the event itself.  Of course, it’s not me losing my hair, so what do I know?

Anyway, her nighttime antics, although amusing at times, can also be exhausting.  After she realized I would not talk with her anymore last night at around 4 am, she actually started talking to the dog.  That’s where my patience ended.  This morning she told John, “Mom yelled at me last night.”  Busted.  She prefers it when John sleeps up there because apparently he’s more chatty at 2 am than I am. 

I didn’t let her sleep as much during the day today in hopes that she would sleep better tonight.  I think I would miss the “night owl” Tanner, though if she disappeared entirely., though.  It’s like turning back the clock before all this happened and hanging with my silly, sassy girl.

Love,
Beth

starting to feel better

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We finally got Tanner to leave the couch! I put her in her room today after lunch for a nap (she slept 3 hours) and then had a pretty uneventful afternoon. Then, Tanner, whose entire life right now seems to revolve around what food she is going to eat next, remembered that Dad said he might bring her home McDonalds. I told her maybe we could spread a blanket upstairs in the play room and have a picnic. So, she calls Dad and puts in an order for she and Jake and we had a picnic upstairs. She was propped up on pillows the whole time, but was very alert and laughed a lot watching Jake and Daddy play like wild men. It seemed very normal, which is rare. So, I’m hoping today she might have a little more energy. I think the chemo is going to put her down for two good days every time and then, slowly, she will feel a little better each day until it is time to get whammied again. She told me today she was afraid to see her friends because she was scared she might give them leukemia. It took me a while to convince her that can’t happen and I’m still not sure she believes me. She also said she was afraid kids would make fun of her because she has leukemia. In what universe is it okay for a five-year-old to have to think about these things? Here’s hoping to see a little more of my girl back tomorrow. Beth

Almost a normal day

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Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.

Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.

So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.

Love,
Beth