Category Archives: treatment

Clinic Day #42

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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

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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

Headed Home — Minus a Thyroid

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September 15, 2010

We’re waiting for discharge at Vanderbilt where I stayed last night after having the second half of my thyroid and, hopefully, all of my cancer, removed. Everything went very well, but we won’t know for sure whether or not I’ll need any radioactive iodine treatment until I see the endocrinologist. That’s the method of giving radiation to any remaining thyroid tissue by ingesting radioactive iodine, which is then absorbed by the thyroid. It would render me radioactive for a few days, but it has few side effects. The lymph nodes around my thyroid turned out not to be a real issue as they were, in my unique anatomy, down my neck further than normal. The doctor did take one parathyroid to test, just in case, and we won’t know about that for several weeks.

It takes a village. Beth stayed with me last night so John could go home. Mom and Kim got the kids to bed and walked Domino. Mom will be here all week and friends have started a dinner list, as usual. We are blessed beyond all understanding with the best friends and family anyone could ever hope for. We often feel we are wearing out our welcome, but they insist on helping anyway. Humbling for sure.

Just a short story about Tanner… she has been collecting soda can pop tops for Ronald McDonald house at school and home. She gets them from all the kids at her lunch table and brings them home and puts them in a little bag… all her idea. It has been driving her crazy that a little boy in her class won’t give her his pop tops. The morning of my surgery she asked me to print out a picture of her with long hair and with no hair. When I asked why she said, “I’m going to show Jordan so he knows why he should give me the pop tops.” LOVE that never give up attitude!

Thanks for all the well wishes. Can’t wait to get home.

Love,
Beth

Clinic Day #40

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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

Childhood Cancer Awareness Month

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September 7, 2010

Every time I sat down today to write a post, I felt scattered… pulled in lots of directions. Should I write about this… or that? I feel scattered for a really good reason – there are lots of exciting things going on.

September is Childhood Cancer Awareness month. Which means we are busy with activities designed to raise awareness and raise money to help end childhood cancer.

Did you know that research dollars designated for Childhood Cancer account for less than 2% of all cancer research dollars annually? This, despite the fact that gains made in treating children with cancer directly benefit adults (the opposite is not true). Chemotherapy was developed for children and tested first on children. When childhood cancer research is underfunded, not only do children suffer, but adults suffer.

Acute Lymphoblastic Leukemia (ALL) is the most common type of childhood cancer. It is the type that Tanner has, and thanks to those who have funded research in the past, and those who have participated in clinical trials, Tanner’s prognosis is good. In 1960, someone with ALL had an 10% chance of survival, today it’s 80%. Tanner’s chances are even better, thanks to the particular type of ALL she has and her individual risk factors.

Here’s the problem, though. The levels of chemo they give are as toxic as the kids can stand. They can’t just give more to make 80% become 100%. There’s no where to go. We need new therapies, hopefully kinder and quicker therapies.

So, we’re committing to everything that we possibly can this month. Any way we can help raise awareness or money, we’re doing it.

For example, Tanner is now officially a Rally Kid for the Rally Foundation for Childhood Cancer Research. Her picture and story appear on their web site at http://rallyfoundation.org/rallykids.php

It’s sobering to me to see her photo among all those stories of battling children. It seems a little too real. Tanner will also be a Rally Rock Princess (along with some other little girls with cancer) at the Rally Mania concert on September 26 at 5 pm at Carnton Plantation. The headliner is Eddie Money with special guest appearances from Kix Brooks, Jars of Clay, Ashley Cleveland, Jordan Pruitt from High School Musical, and many more. It’s a great place to bring a picnic and watch the concert. You can buy tickets at online at
http://www.ticketsnashville.com/WebSales/Pages/VenueListPage.aspx?rguid=7db8544a-97dd-4f7b-a007-60483427206c& or at the gate the day of.

Last year's Lemonade for Leukemia stand raised $259!

I’ll post in the coming days about other fun opportunities to help this month. But, I do want to dedicate a little space to our most important event of the month… Tanner’s lemonade sale tomorrow!!! Tanner and her friend, Corinne, will be holding a lemonade stand tomorrow from about 4 pm to 5:30 or 6 pm in Moore’s Landing subdivision off of Lewisburg Pike in Franklin. Come by if you’re in the area and buy some lemonade from the girls. They’re donating all the money to Team Tanner.

Speaking of Team Tanner… oh my gosh! It has been just 2 weeks and five days since I first posted about our efforts to raise money for the Leukemia and Lymphoma Society’s Light the Night Walk on October 7. Our goal is $10,000. To date, we have raised more than $7,000. Really. We are humbled beyond humble and can’t thank everyone enough for such a great start to our campaign. People have been so amazing. Even the kids at our church are planning a Light the Night walk of their own and getting pledges for Team Tanner. They’re also having a bake sale and Tanner is doing a lemonade stand between services. If you still want to donate go to http://pages.lightthenight.org/tn/MidTN10/TeamTanner

I always say if one good thing comes out of this whole mess, it’s a firm belief in the goodness of people.

Love,
Beth

P.S. I have shamelessly plagiarized my childhood cancer statistics and info from my friend, Larisa. She, obviously, is much better read than I. I know she won’t care if I plagiarize as long as it makes a difference. She has as much at stake as I do.

Clinic Day #39 — Just a Counts Check

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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

This Never Ending Week

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August 13, 2010

An important note before you read this post: The news in this post would be very disturbing to Tanner if she knew about it, so I know I can count on you all to keep it on the down low when she is around. She has more than most seven-year-olds to deal with and doesn’t need anything else to be worried about.

I’m eating Key Lime Pie… a big piece. There is nothing else to do at the end of a week like this.

First, the IVig transfusion on Monday, the headache reaction to it on Wednesday, the crazy ativan/LP/runaway saga and then Thursday I get a call from my doctor’s office at 4:20 pm, just 2 hours before the girls are supposed to show up at my house for bunco, telling me that I have thyroid cancer.

I’m not kidding.

Despite the fact that the fine needle aspiration and the initial pathology during the surgery showed no cancer, the nodule had some very slow growing, early stage cancer cells.

So, back to the OR next month to have the other half of my thyroid removed. At this point, they do not think that I will need radiation or anything other than surgical removal. And, they have no reason to even think that the other half is cancerous as well, but I do have a very small nodule on the remaining side and it makes sense to just get rid of it.

Lollipop cancer compared to Tanner’s version. I have no right to complain, really. We caught it very early, thanks to my awesome Internal Med doc, and we’re just going to move forward and do what needs to be done.

Enough about me, this blog is about Tanner. She did get to go to the first day of school, but didn’t make it all day. She got very overheated at recess and couldn’t cool off. I picked her up and after an hour or so, she felt better and I took her back for the last hour. She started her five-day-steroid pulse Wednesday night and they upped her dose because she had gained some weight. It is very easy for John and I to see the effects of the increase. She is acting on day 2 like she usually does on day 4. She was a little out of it this morning and cried some for no reason. We just decided to only send her for the morning and come get her before lunch. But, Tanner wanted to stay for lunch because “I think they are having popcorn chicken.” Too funny. It was a good decision. She is definitely having a harder time than normal with this pulse. She may or may not make it on Monday. It’s her last day of the pulse and the increased dose may wipe her out. It’s sad to me that her first week of school is being marred by the steroids.

I think I also forgot to mention in my last post about the crazy ativan reaction how high Tanner’s counts were – 5,540!!! Holy Moly. We haven’t seen counts like that in a long time. They aren’t sure why they are so high, although she has been coughing some in the morning lately, so it could be a virus. She is still on the 50% chemo dosage and they didn’t change it, but we have to go back in two weeks for a counts check. If they are still above 1,500, they will raise her chemo again.

It’s been a tough week, and I think it will probably be a tough couple of months until the second surgery is over and they get the thyroid medication I will need adjusted properly to keep me consistent. But, we will make it… like we always do.

Love,
Beth

Laughter is the best medicine

P.S. Thanks to my bunco girls who kept me laughing on a night I could have definitely had a pity party. Pity Parties are lonely, but laughing with girlfriends is priceless. And, to my husband who is my rock.

Clinic Day #38 – What a Day

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August 11, 2010

I had such high hopes for Ativan easing Tanner through the LP today, but it did not turn out the way I had hoped at all.

The day started at about 2 am when Tanner woke with a nasty headache. I gave her some painkiller and she went back to sleep, but woke at 6 am screaming and clutching her head. I had a moment when I was right back to the night of her bactrim reaction; screaming and clutching her head was the last thing she did before going unconscious. I had to fight the impulse to throw her in the car and race to the hospital. But, then I remembered Cari saying something about headache being a possible side effect of the IVig transfusion. The on-call doctor confirmed my suspicions and told us to give her a full dose of oxycodone. If that wasn’t enough, they could give her morphine in the clinic.

Poor Tanner spent all morning with a horrible headache and nauseated. She slept in the car on the way to clinic with a trash can in her lap, and I carried her into the hospital. But, she started to feel a little better… until we gave her the ativan. Oh my.

So, ativan is an anti-anxiety med that has the added benefit of easing nausea as well. It seemed like the perfect choice to use for the LP. We have given it to Tanner before in a pill form and she did great on it. Just knocked the edge off of her. Apparently, the IV version works a little too well on her.

First, I noticed slurring and stumbling. Then, the silliness started. And, finally, the agitation and complete lack of impulse control set in.

By the time we got to the pre-op waiting area, she was just as silly as she could be. When I went up to register her, I noticed someone running… fast… out of the corner of my eye. I turned and it was… Tanner. She was bolting, running from a surgery she desperately did not want to have. She looked crazily gleeful, but turned panic-stricken and terrified when I caught her and tried to get her to let the nice lady put an armband on her. I knew when I heard the woman calling for help for the “child having an anxiety attack” in the lobby, that we were in trouble.

Usually, John and I do LP together. We both like to be there. But, today, John stayed home with Jake and I was solo, which made running down my little runaway, bogged down with a computer bag, purse and a bum neck, darn near impossible. We ended up putting me in a wheelchair with a vice grip around Tanner in my lap as the nurse pushed us to the pre-op area. She was totally disconnected from reality.

Sadly, being disconnected from reality didn’t change the way it all came down in the end. It happened the way it always does, no matter what we do. At the very end, she yelled, “Is that the sleepy milk?” and begged me to hold onto her and not leave her. So pitiful.

The doctors and nurses and I convened afterwards and just decided to give up on the anti-anxiety approach and just go straight at it from now on. If we have to hold her down, so be it; it’s what we end up doing anyway despite all efforts otherwise. They said she is smart enough to figure out every way we try to disguise it.

After she fell asleep in my arms on the table, I laid her down and kissed her and reminded myself that we just have four more of these before August 6, 2011. Just four more.

All the agitation was gone after she woke up from surgery. In fact, when I went to recovery she had the nurses totally cracking up because she was talking a mile-a-minute and being really funny. It took that damn ativan until about 4 pm to really wear off. Never again.

The good news is that she didn’t get sick from the methotrexate injected into her spine this time. She still has the headache though; it hasn’t gone away yet.

Tomorrow is the first day of school. Earlier today, it seemed impossible to think she would make it, but as always, Tanner’s will astounds me. We spent the last half hour before bed packing up her backpack, sharpening pencils and painting her fingernails. She’s ready.

In the retelling, today’s story seemed somewhat funny, but as is most often the case, it didn’t seem that way at the time. It occurred to me this afternoon, that the only difference between today and every other day Tanner has had an LP is that she didn’t have any impulse control today. The impulse to run away must be there every single time for her. Today, she was able to indulge herself and run wildly through the lobby, trying to escape a disease she never asked to get and a fate I would never wish upon anyone, much less a seven-year-old.

Love,
Beth

One Down, One to Go

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August 9, 2010

A little IV pole never stopped anyone from playing legos

All finished with the IVig transfusion. It didn’t take as long as we expected. Apparently, the first time they give the infusion, they have to do it slowly in case the child has a reaction. But, the next time, they can infuse faster since they know she didn’t have a reaction last time. So, it was a shorter visit than we expected, which was a great surprise.

Still, we were there for about three hours, but actually had a pretty good time. The kids were so into playing legos that they didn’t want to leave. They also had a good time with Guy Gilchrist, the man who draws the Nancy cartoon from the newspaper. He was at clinic teaching kids to draw. He also drew the Muppets cartoon for years and taught Tanner to draw Kermit. He was funny and entertaining and helped pass the time.

Tomorrow is Tanner’s last day of summer vacation. Wednesday, she goes to clinic and Thursday is the first day of school. We’re going to see a movie in the morning, registering for school in the afternoon and then, hopefully, swimming with friends.

Wednesday morning is the dreaded lumbar puncture. Tanner is very worried about it. We’re going to give her ativan in the morning, an anti-anxiety medication, and hope that helps her get through it with the minimum amount of trauma. Please pray for her. It’s wrong for a child to have to worry so much about something.

Love,
Beth

Right Day, Wrong Year

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August 6, 2010

It’s August 6 and I know I should be grateful that Tanner’s made it through 14 months of chemo and only has one year left, but I can’t help wishing it was August 6, 2011. Today marks exactly one year left of chemo treatment. Even Tanner didn’t know exactly how to feel about this.

John brought home a cake that said… “Go Tanner! One more year!” Tanner was happy for the cake, but at bedtime I asked her how she felt when I said that one year from today, she would stop chemo. “A little sad,” she said. “A year is a really long time.” See, “one more year” is not very inspiring. (see my “No More” post from last week)

So, we had a small celebration, not a huge one, and we’ll keep on keeping on.

Jake came home yesterday! Hurray for my little man being home! My parents brought him back and stayed the night and we spent the morning watching shows the kids did in the basement before they left to return home and get ready for some more grandchildren to show up at their house next week.

Tanner has some kind of weird cold virus that she is apparently fighting pretty well. She sounds lousy when she wakes up in the morning, but seems fine during the day and then feels a little bad again at bedtime.

We go in on Monday for another IVIg transfusion. IVIg is an immunoglobin transfusion that provides antibodies to help bolster her immune system. She had one back in February and it helped so much. She was catching one respiratory virus/infection after another and then once she had the transfusions, stayed pretty healthy the rest of the school year. I asked the doctor to check again before school started and, sure enough, her levels were even lower this time. Just didn’t think that was the best way to start the school year. She’s caught her fair share of colds/coughs/strep this summer and I think the infusion will help. It takes about three hours so we opted not to tack it on to her clinic day on Wednesday, since she is having her spinal that day and it is already a long day. So, transfusion Monday, clinic day Wednesday, first day of school Thursday. Busy week.

We’re going to let this day pass somewhat quietly… it’s the wrong year. August 6, 2011 though, look out. The celebration will be completely out of control.

Love,
Beth