Category Archives: Roger Day

TGIF

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June 4, 2010

Tanner’s just not feeling very well. It’s like this most recent round of chemo is affecting her more than it usually does. Through all the first 6 months of horrible chemo she received, she threw up only twice, now she has thrown up twice in one week and has needed anti-nausea meds every day. Weird.

She’s also been really hot, which I assume is caused by the steroids. She will complain about not being able to cool off and will actually feel really hot to the touch, but has no fever. Like hot flashes, I guess.

I did a little research on the Leukemia and Lymphoma Society discussion boards. I go there especially when I have a side effect I want to know more about. Doctors are only so helpful about side effects. They’re more concerned (as they should be) with the effectiveness of all these drugs and whether they’re actually killing the leukemia. Mommas are the ones who worry about side effects and the LLS discussion boards are where they talk about them. Turns out it’s not uncommon for kids to begin having more side effects as maintenance goes along. The theory is that the toxicity of the chemo over the long-term just builds up in their little bodies and they become too tired to fight them off. Many mothers of boys (who do an extra year of chemo) talked about how sick and fatigued their boys were the third year of chemo. So sad.

All this feeling bad hasn’t really stopped us from having some fun, though. Yesterday, after waking up sick, Tanner rebounded and, within an hour, we went to the pool. Kids are amazing. We haven’t played outside as much as usual; the heat was too much for her. But, the steroids are wearing off and we’ll be back to scootering and biking in no time, I’m sure.

Wednesday, we went to see our favorite singer, Roger Day, at the Spring Hill library. It was, as always, lots of fun. Tanner and Jake got a seat up front and Roger worked Tanner’s name into a couple of songs, which tickled her. They got signed t-shirts and we went home with a new copy of a CD we misplaced during the move. We’ve been singing, “As a matter of fact, Jack, I like Yaks! We like YAKS!” in the car ever since.

When we were in line waiting to get into the room where Roger was going to perform, Tanner started talking to a Mom in front of us. She said, “I have cancer, well leukemia, and Roger Day came to our house and had a concert with my friends.” The look on that’s Mom’s face was priceless. Tanner was so matter-of-fact about it the woman never said a thing to her about having cancer, she just looked startled for a moment and kept talking. Lol

Today, more pool time and then we need to go sing Happy Birthday to Aunt Kim. Happy birthday Kimmie! Next week, Tanner has theater camp all week. I’m hoping it will be the perfect outlet for my little drama queen.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

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November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

Love,
Beth

Bye, Bye DI !!!

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November 18, 2009

IMG_1286It’s here. Tomorrow is the last day of DI… the last day of the most intensive part of leukemia treatment… the last day before we enter LTM (Long Term Maintenance)… a day we have been working towards for six long, grueling months. I can’t believe it’s here.

We’re celebrating. I made t-shirts for Jake, John, Tanner and I and we are going to wear them to clinic tomorrow. I think we are also going to pass out something to the staff – I’m not sure what yet – maybe donuts? — to thank them for making this journey with us and for, literally, being our saviors.

John is picking up a cake on the way home from work tomorrow so we can celebrate with a special dinner. Depending on how her counts turn out tomorrow, we may invite some friends, but it’s not likely; we expect her counts to be low.

So, here’s how our friends and family can celebrate with us. Send a comment to Tanner congratulating her on the last day of DI. I want her to open up Tanner Time and Friends of Tanner and see how many people love her and realize what a big accomplishment this is.

We’ve really been celebrating all week. We’ve been visiting playgrounds and stopping by church to drop something off and getting to see the whole church staff (aka wonderful friends) and giving them hugs. Tanner got to spend the day with Aunt Beth today at her house (I think it must have magical properties the way our kids plead to go there) while Jake and I played some mean wii Star Wars. We’ve just been finding ways to remember how great it is to feel good and have the energy to have fun.

Yesterday was a great day. In fact, it was a ROGER DAY!!! Roger Day is a children’s recording artist who is big time at our house and he was so nice to stop by and bring Tanner his newest CD, Brain Freeze. It’s AWESOME!!! If you’ve been following our story long enough, you might remember that Roger came to our house back in July to have a small concert for a handful of kids and we had the best time. He is a great entertainer and a great person and he made my kids’ day.

Tanner and I in our new hats

Tanner and I in our new hats

We had another visitor yesterday as well. My friend Pat dropped by with hats and chicken noodle soup… the perfect combo. She had seen this adorable pink fuzzy hat for Tanner and brought it for Tanner and a hat for me, John and Jake, too. What a nice surprise. When she left we noticed a little gift bag on the front porch that contained an envelope full of cards from a 1st grade class at Tanner’s school. There were pictures of each child on the card and Tanner loved reading them and remembering all her school friends. Then, John came home with two new wii games sent by a long-distance friend who has recently relapsed with lymphoma. Mind boggling to think they thought of us when they have so much on their own plates.

It’s a lovely world where hats, chicken noodle soup and Roger Day all show up on the same day. Help us celebrating a life worth living tomorrow.

Love,
Beth

Same last name?

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Tanner and Jake playing doctor in June

Tanner and Jake playing doctor in June

August 25, 2009 It’s amazing to watch a kid internalizing something that is happening to them and then see it show up in their play. I was in the kitchen cleaning up today and heard Jake yelling, “No, no, no!” at Tanner as she was saying, “You have to hold still or it will hurt!” This, in the world of a mother, is grounds for leaping the kitchen bar to see what is going on.

 

What I found was Jake, lying on the floor with his shirt unbuttoned, Tanner trying to hold him down as she “sliced” him with a pretend scalpel from the doctor kit. After convincing Tanner that she really shouldn’t hold her brother down for pretend medical procedures, I volunteered to let her operate on me instead.

Tanner proceeded, with great aplomb, to surgically implant a port-a-cath into my chest. Well, actually, it was a little closer to my belly-button, but why nitpick?

She then accessed my port with a pretend needle, and with a syringe, proceeded to “flush” my port and administer chemo. All the while, I was supposed to be asleep from “sleepy milk.”

Priceless… both for my memory bank and for Tanner’s mental health. In one playful moment, she turned the tables and became the one in control of all the medical procedures she has endured. Good for her.

This play mimics many of the things that happen to her each week at clinic or have happened to her during her hospital stay at diagnosis. The day after she was diagnosed, Tanner had a port-a-cath surgically implanted into her chest. This is a small, circular port with a silicone bubble on the top and a catheter line that runs from the port to an artery directly above her heart. When she needs anything you would normally receive or give through an IV (blood, medicine, chemo, etc.), she gets it through her port. It allows medicine to get through her body quickly and allows her more freedom than a central line which leaves the IV tubes hanging out of the child’s chest. Every week, when we go to clinic, the nurse sticks Tanner with an IV needle through her skin into her port. That’s how they draw blood to check her counts and how the administer her chemo. Luckily, there is a numbing cream we can put on her port before we go to the hospital that really cuts down on the pain of accessing (and deaccessing) the port.

Last week, she sat at a disconnected computer in my office while Jake and I played foosball and pretended to be the admitting clerk at the hospital. She told me to pretend I was in the ER and she was trying to find me a room. The conversation went something like this:

T: Mam, can you tell me your name?
B: Beth Page

T: What is your son’s name?
B: Jake

T: Same last name?
B: Uh, yes.

T: Your phone number area code first?
B: I give the number, trying not to laugh

T: I’ll need your insurance company
B: United Healthcare

T: And your group number
B: Pause (Now I am laughing and have to take a moment). 51645

T: Thank you, Mam. I’m looking for a room for you and your son. You don’t want to have to sleep in the ER; it’s very noisy here. Just give me a minute. (she types at the computer for a while). Guess what? I found you a room! You’re so lucky!

Too funny… and too awesome. This is exactly the type of thing that lets her process what has been happening to her and shows me that she is accepting this new normal. She is six, but she has it all figured out, thanks to a doctor’s kit and a somewhat willing brother as a patient.

Love,
Beth

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.