Clinic Day #42

October 20, 2010

Anytime Tanner’s chemo gets increased, we have to go in for a counts check two weeks later to see what effect the increase has had. Today her neutraphils were at 2,700, up from 1,100 two weeks ago and her hemoglobin remained unchanged at 11.2 (a normal level). Both of these things surprised me greatly, in a good way!

It’s very possible her neutraphils are up due to the virus she had last week and they may come down in the next week or so. Her hemoglobin level doesn’t really explain her lack of energy recently, but maybe the higher dose of chemo is just harder on her. I’m trying to tell my Mommy Radar to trust the numbers and calm down, but it just won’t listen.

Tanner, Leah and Elise at the Zoo yesterday

She also got a flu shot today… it was the first time ever that Tanner got a shot of any kind without screaming and crying. I bribed her with silly bandz… who knew? She is participating in a study to determine whether giving kids with ALL an increased flu vaccine dosage will increase their immunity to the flu. Apparently, they have done a similar study with the elderly and a higher dose did improve immunity, so they figured it might work for anyone who is immuno-compromised.

Riding the carousel at the zoo

We agreed to do the study and then they told us that there is a $40 payment for study — $20 when you get the shot and $20 when we go back for a blood draw in a month. Tanner was ecstatic! “I’m going to waste it all on silly bandz!!!” she screamed. So, we went directly for Silly Bandz after clinic. Happy girl.

Love, Beth

Clinic Day #41

October 6, 2010

Seems like I’ll never really understand counts. Tanner’s neutraphils were at 1,100 today, which is the low side of where they want them (1,000 to 1,500). But, her monocytes were very strong and they eventually become neutraphils, so they assumed she was about to go up to about 1,300. So they raised her chemo. Huh?

I’m going to be surprised if this little chemo bump doesn’t mean Tanner has to be pulled out of school for a month. Her counts do not recover quickly these days. It will be a devastating set back for her if it happens.

All her other counts looked great. Her hemoglobin and red counts have been very strong lately, which equals lots of energy and means she has been feeling pretty good.

The Tennessean ran a very cool article on Tanner’s lemonade stands today. Tanner took a copy into school to show her classmates. I’m hoping it results in more donations to Team Tanner. Click here to see a copy of the article LLS_Tennessean_Oct. 6

Light the Night is tomorrow night. We are ready!

Love,
Beth

Clinic Day #40

September 8, 2010

Today was Tanner’s monthly clinic visit for Vincristine and counts. Her neutraphil counts were about where we expected them after having raised her chemo two weeks ago to 75% — 1,500, which is the high side of where they like them to be. If they are still up next month, they will raise her chemo again. I’m hoping that’s not the case as the last 2 or 3 times they have tried to raise her methotrexate level to 100%, her counts have crashed and it takes 3-4 weeks for them to come back up above 1,000. That would mean her missing a lot of school and be so disheartening for her. She’s doing so well.

It was the fastest clinic visit we have ever had. We were in an out in 1 ½ hours thanks to a new method of ordering chemo. Love Vanderbilt. She was back at school in time for lunch.

The weather cooperated enough for us to have a very successful lemonade stand! We don’t have an official count yet, because we have lots of coins to count, but we raised somewhere in the neighborhood of $170!!! Wow! She is so excited and can’t wait to tell Corinne at school tomorrow. Thanks to Corinne, Laurel and Ashley for being our lemonade stand partners.

We had some special visitors at our lemonade stand – Madelyn and her mom, Amy, and brother, Hudson! Madelyn is a little four-year-old girl who lives in our neighborhood and also has ALL. It was fun to see them and always great to be able to chat with Amy.

Started another 5-day pulse of steroids tonight. She is on the same increased dosage that she had such a hard time with last month. I hope she can hold it together enough to make it to her Alice in Wonderland rehearsal on Friday night. She has been counting the days down until this first rehearsal for two weeks.

Thanks to all the sweet former neighbors who were so generous to Tanner’s Lemonade for Leukemia stand today. We miss y’all!

Love,
Beth

Clinic Day #39 — Just a Counts Check

August 25, 2010

Jake and I picked up Tanner early from school today so we could go to clinic for a counts check. We loaded her in the car, slapped some EMLA (numbing cream) on her port, and headed to Sonic for some ice cream and to give the EMLA time to do it’s job.

Her counts were still very high, as we expected they would be. They were 4,700. They’ve upped her 6MP and methotrexate dosage to nearly 75% and we’ll see what happens in two more weeks.

Clinic was very quiet, so the kids spread out with legos and Barbies while we waited. We played a new paper electric guitar with Sara, the childlife specialist, danced in infusion room and generally got a little crazy. It is amazing how like family these people who care for your child will become. It is actually possible to have fun while we are there for such serious business. I had to promise Jake we would come back soon so we could leave.

Believe it or not, we are already past the half-way mark to our goal of $10,000 for Tanner’s Light the Night team… you have no idea how we are humbled by this outpouring of support for our family.

Love,
Beth

Clinic Day #37

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

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

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

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

Clinic Day #35

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

Laying Low

June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.

Love,
Beth