Clinic Day #44

Posted on by
5

December 1, 2010

Tanner went in for her monthly clinic visit today to get Vincristine in her port. Her counts were high (too high, really) at 3,500. Dr. Mixan doesn’t know why, but per protocol, we will wait a few months to see if she comes back down before raising her chemo above 100%.

Tanner has been to clinic 5 times in the last month. During maintenance, we typically go once a month, but for counts checks, flu shot study and a fever, we happened to be there a lot last month. This morning, she just started to cry when I told her it was time to get dressed for clinic. I hugged her and told her I wished we didn’t have to go and helped her get dressed. We dropped Jake at Aunt Beth’s house and went to the hospital.

The clinic visit went very smoothly, but Tanner kept telling me the whole time that her stomach hurt and she didn’t think she could go back to school. Then, when I thought for a brief time she might make it back for recess, she rallied and was excited to go back. But, when we got in the car, I looked at the clock and there was no way to make it to recess. Tanner started yelling at me in this desperate voice, “Just drive really fast. Don’t stop for lunch. Just get me there… just GET ME THERE!”

I didn’t say a thing. What could I say? I knew it wasn’t just about recess. It was about missing things in general. Going to the hospital to get poked and get chemo while your brother spends a fun filled day at Aunt Beth’s house and your classmates get to go out for recess. Not for the first time, nor the only time. For the 60th or 70th time.

The car got very quiet and I could hear her sniffling in the back seat. I wanted to say something comforting, but I don’t know any more comforting words. I’m fresh out. “Don’t worry, we’ll just be doing this 20 more times or so for 9 more months and
THEN we’ll be done.” Yes, that would be cheerful.

Then, she told me she was sorry she yelled at me and asked me how much longer she would have to do this. “Nine months,” I said, quietly. She just began to cry and said, “I wish I was someone else.”

Again, no words of comfort. She had given up and so had I. It’s just too long sometimes. Too much behind us and too much ahead. She’s doing so well and I know I should be grateful, but I don’t feel that way lately. I just feel tired and ready to not worry about all of this.

I ended up letting her stay home the rest of the day. I just couldn’t muster up enough momminess to encourage her to go back. I’m sad for her, but in this numb kind of way where I seem paralyzed to do much to help.

I realize this post is a big downer, but if I’m being truthful, these days are just as much a part of the journey as the celebratory ones or the tragically sad ones. In between are these numb ones where caring about all of this seems like a lot to ask. Leukemia is an exhausting disease that could wear anyone down. I know we will make it to the end; even on a day like today I have no doubt of that. I know we are strong enough to endure. But, I also know that there will be battle scars that never heal as a result. For all of us. And some days, I mourn those scars and question why this had to happen at all.

Love,
Beth

Good News All Around

Posted on by
4

November 20, 2010

Friday was full of good news. First, I got my scan results… and they were clean!!! I should have posted last night, but I think I was just so relieved, I just wanted it to all go away and not even think about it anymore. They found remnant tissue around my thyroid, as they expected, but the radiation was doing its job in killing that. And, they didn’t see anything else… nothing!!! That’s what I like to hear. Now, to get back to life without all these interruptions.

Second, we found out Tanner got a role in Annie. She will be an orphan named Kate. Talk about one ecstatic child! She threw her arms up in the air and screamed as only a seven year old girl can. Rehearsals don’t start until January, but she’s been singing “Hard Knock Life” for days. Even Jake can belt out a resounding rendition of “Tomorrow” at this point.

Jake scrapping for the ball

Today, Jake had his end of season soccer party at CiCi’s pizza. He had a great team with really nice kids and parents so we had such a good time. The coach gave out trophies… you’ve never seen anyone more proud than Jake. He carried that trophy around half the afternoon with this big grin on his face. The pictures are on John’s phone, but I’ll post some next time. He really was adorable.

On a breakaway

I think it’s just sinking in for me that this latest health debacle is actually over. I think one of the side effects of becoming strong enough to handle what we’ve been through is that you also become a little numb to news – be it good, or bad. It’s like you just brace yourself for the worst and it’s difficult to believe it’s actually good news instead of bad. Even though my cancer has not been hard to deal with physically, it’s been hard on our family mentally. Just the disruption to our lives over and over and, for John and I, feeling like we were kicked when we already down. I just want to be able to move forward with some things, instead of always feeling like we’re treading water trying to keep from drowning. Swimming to shore and standing on dry ground would be a nice change.

Congratulations from a friend

Celebrations all around. Hurray for good news.

Love,
Beth

I Come Home, Tanner Goes to the Hospital

Posted on by
1

November 17, 2010

As I was on my knees fastidiously de-radiating my friend, Kim’s house so I could go home to my family, John and Tanner were on their way to the hospital with a fever. The cough she had been fighting all week finally peaked and she was up to 102 degrees. John was able to skip the ER and go straight to clinic (much faster). Fortunately, her fever came down and her counts were high enough that they were able to come home after an IV round of Rocefin (a broad-range antibiotic).

She took a big nap yesterday afternoon, but was feeling fine by bedtime, despite some coughing during the night. We kept her home from school today, but we all went in for her Thanksgiving play and Thanksgiving lunch (I didn’t stay for lunch as I am still not clear to use regular non-throwaway utensils). The play was cute and she is feeling fine. I think she will be able to return to school tomorrow.

The bumped up chemo has done it’s job. Her neutraphils were at 1,150, which is about perfect for maintenance. Her hemoglobin and platelets, however, are holding strong, which is all great. Hopefully, they won’t drop any more and she can just stay at this perfect spot.

While she and John were at the hospital, they met some Titans – Mark Mariani (L) and Robert Johnson (R) – who were visiting kids in the infusion room. Tanner looks like a little sapling between two mighty oaks, huh?

I’m feeling just fine… a little tiny bit fatigued, but otherwise back to my normal self. I can be around the kids, but can’t touch them much. No more than 30 minutes of contact a day until the day after Thanksgiving. I get quick hugs to try to sustain me.

John’s Mom is on duty and has been a great help. She’ll get Jake to school tomorrow while I go into Vanderbilt for my body scan. This should tell us whether the cancer had spread anywhere beyond the thyroid. I have to lie still for an hour-and-a-half. Let’s hope I can listen to an ipod… otherwise it’s going to be a very long scan. Maybe I’ll nod off…

Speaking of nodding off…

Love,
Beth

On Its Way Out

Posted on by
3

I think the radiation is definitely on its way out. I feel much better today after several days of mild malaise and fatigue. Even stopped by the house today to pick up Domino and take him for a walk. The walk was tiring, but it felt good to get moving and be outside. I think my friend Kim is going to come home to find a permanent indention in her new sofa in the shape of my heiney. I’ve read two books and watched countless movies and even gotten a few (a very few) things done.

Mostly, I miss my family. John and the kids seem to be doing great, but I know it is unsettling for the kids to keep having me drop out of sight while I recover from the surgeries or now while I am hiding my glow from them. Tanner still doesn’t know I have cancer, but I think she is smart enough to figure out that it’s somewhat serious and it makes her anxious. But, mostly I think they just miss their mommy… and I miss them. Still, I think John has really enjoyed his time with them.

I’ll come home Tuesday. Even though I can’t touch the kids more than 30 minutes cumulatively each day, I can at least be around them by then and I can help. And, I can get hugs, even if they’re quick. That will feel good.

I go back to Vanderbilt Thursday for a body scan to see how effective the treatment has been and determine if the cancer had spread anywhere outside the thyroid. If it had, the cancerous tissue would have absorbed the radioactive iodine and it would show up on the scan. I think I have to lie still for 1 ½ hours (can you say, “Nap?”).

I ended my low iodine diet today at dinner time. John and the kids did a “drive by” and brought me Jets pizza, some candy and a cake in the shape of a turkey that says, “Glow, Mama, Glow.” I laughed out loud. Jake was so cute bringing me the candy. He put it on the ground and backed away from me and said, “You’re done with your diet!!!!” Sweet thing. It killed me not to be able to give him a big hug.

Tanner has her Annie callback tomorrow night. She seems to have gotten over her cold and cough pretty much, so I think her voice is back in singing form. I wish I could go so badly, but I’ll just have to get a report from Daddy.

Thanks for all the well wishes. People have been so nice… as always.

Love,
Beth

All Aglow

Posted on by
2

November 12, 2010

I’m aglow… with radiation! I’m sitting on a plastic tablecloth on my BFF Kim’s couch watching the Today show. It’s like a vacation as long as I forget why I’m here. I don’t feel really bad, but I don’t feel good either. I feel like I’ve been poisoned… go figure.

I’m still on the low iodine diet through Sunday to ensure the radioactive iodine absorbs into any remaining thyroid tissue as well as possible. So, Beth is coming over to make us hamburgers with homemade French fries and homemade ketchup. Yum! How does a girl thank friends like these? The thing is, I knew that they would take care of me… it’s just what we do for each other.

John and the kids dropped by last night and rang the doorbell and drove off before I could answer (This is affectionately referred to as the “Ding Dong Ditch” in the South). They left funny gifts the kids had picked out… a reindeer antler headband and a “Do Not Disturb” eye mask! Too funny!

Yesterday was surreal, but a little anticlimactic. No hazmat suit for the lady who gave me my RAI pills (I feel ripped off), just gloves. But, the pills themselves came in a space age looking metal canister. When she opened it, the metal was 2 inches thick and there was a very small indentation inside with a small plastic vial in it. The pills were in that vial and I had to take them without touching them (apparently it’s okay to touch them with the inside of your body, but not the outside!). Then, after I took them, a guy came and measured me from one foot and three feet away with a radiation detector to determine how radioactive I was. Apparently, everyone is different depending upon body mass (this is the one time it would have paid to have been more overweight than I am). Then, they write your contact precautions based on those measurements.

So, no closer than three feet from someone for me and six feet for kids or pregnant women for at least three days, but our doctor suggested we go seven days for that precaution. Even after that, I’m not allowed to have direct contact with the kids for more than 30 minutes a day for the next 16 days. Bummer. I’m going to miss cuddling with my babies so bad. But, I can get out more than I thought. No reason I can’t run to the video store or grocery during off hours when there aren’t a lot of people.

I feel like I’ve hijacked this blog… it is called Tanner Time, after all. So, here’s how Tanner’s doing. She’s having a somewhat hard time handling this extra chemo load. I think we had gotten spoiled being on 50% chemo for so long and now she’s on 100%. She missed school Monday and Wednesday. She just didn’t feel good. And, she’s fighting some kind of cold. Jake had a mild case of croup this week and missed school, so it’s been a little nuts this week.

Tanner auditioned for an orphan role in Annie last weekend and did so well. She has a callback this Monday and is so excited. It was a leap of faith for John and I to even let her try out because the rehearsal schedule will probably be a little tiring, but we just felt like it was something she wanted so badly that it was worth it. I was so proud of her for doing so well at the audition; she had just had that big dose of chemo and was on steroids, but she still got up there and gave it her best. Hope her cold clears up by then.

I think if nothing else, I am gaining a new respect for Tanner’s resilience. She has pointed out to me several times over the last few weeks that I am just like her – I can’t eat what I want, I have to stay away from people and I have a yucky taste in my mouth that changes the way food tastes. And, now I feel bad like she must have so often over the last year-and-a-half. I’m having a mini-dose of her life. Wow. I respect her even more. She doesn’t complain often and now I realize she really could. I have to say if I woke up one morning and felt like this, I would call in sick to work, but I think she goes to school like this some days. Strong kid, that girl of mine.

Thanks for all the well wishes; I’m doing just fine.

Love,
Beth

Clinic Day #43

Posted on by
4

November 3, 2010

I don’t know why it surprised me. It shouldn’t have. It’s not like we have not known all along how kind the people at Vandy Children’s are. I think it was just stunning to look at all the kids who were in the hospital today and realize that the comfort and peace of mind of just one of those children was so important to them.

Today, when we went down to the surgery waiting area for Tanner’s LP, both the Childlife Specialist, Sara, and the music therapist, Jenny, came with us. Then they accompanied us to the pre-op room and, finally, to the operating room itself. They played music, dealt a hand of UNO, and generally, were engaging enough to distract Tanner from the impending, dreaded sleepy milk.

It was a vast improvement over the past few times. There were no anti-anxiety drugs, no tricks, no deceit. She did cry and get scared at the very end, but the lead up was so much better. She was just having too much fun to get so worked up.

In the end, I carried her to the operating room and held her while they pushed the sleepy milk into her port. She buried her head in my neck and cried, then finally went to sleep. I laid her down on the gurney and we left to spend another ½ hour in a waiting room we now know like the backs of our hands. It was the best it could be, but let’s face it… it still sucks.

So, four kinds of chemo delivered three different ways… plus steroids… in one day. Anytime I start to feel a little nervous about the radiation next week, I remember all she endures.

Her counts were good… too good at 2,600, so they upped her chemo again. I suspect she will feel pretty bad tomorrow, but you would have never known it this afternoon. She danced and sang and she and Jake put on a superhero show for Aunt Beth. And, unbelievably, had trouble going to sleep tonight because of the “nap” she had at the hospital.

Heard about yet another little girl from Franklin diagnosed with leukemia this week. Please pray for her family as they struggle to comprehend the incomprehensible and for this little girl that the chemo begins to heal her quickly and her body responds as the doctors hope it will.

Love,
Beth

Trick-or-Treat

Posted on by
1

Wow! What a difference a year makes. Last year, Tanner had just been released from the hospital at 1 pm on Halloween after a 10-day stint for pneumonia. She had lost all her hair while in the hospital and had come home with her port accessed so we could give her IV antibiotics around the clock for the next few days.

This year, no worries. She is full of energy and has beautiful new curly hair and looked adorable as Alice in Wonderland. She and Jake had so much fun trick-or-treating. Our neighborhood was FULL of trick-or-treaters which always makes for a good time.

We’ve had a great weekend. Nothing special, just simple fun playing with neighbors and hanging out at home. I’m on day 4 of my low iodine diet. It’s a little repetitive and limiting and with no dairy allowed, I’m missing creamy stuff. But, I think I’m losing some weight, so there’s that silver lining you can almost always find!

The worst part of the diet is no chocolate or red dye #3, which pretty much eliminates all candy… on Halloween! It almost didn’t seem like Halloween without the candy coma.

Tanner will have to miss three days of school this week because they are offering the flu mist Tuesday, which is a live virus and Tanner can’t afford to be around a large number of people with that vaccine in their system. Dr. Mixan said three days. Wednesday is clinic day and she will have the dreaded LP. We’re forgoing all anti-anxiety meds this time. I’m going for bribes — silly bandz????? We’re also going to sit down with her and let her plan HOW she gets the sleepy milk. Does she want to lie on the table or have me hold her or sit in my lap. What does she want them to say before they give it? Or, does she want to count to three before they give it? Does she want music playing? What does she want to eat or drink when she wakes up? I think giving her control of what we can will help her feel less helpless. We’ll see.

Hope your Halloween was spooky and happy!

Love,
Beth

Telling It Like It Is

Posted on by
Reply

October 28, 2010

I made it through my first day of the low iodine diet. Thanks to Beth and her yummy bread and muffins, it wasn’t too bad. Although I will say that scrambled egg whites are a little weird (no point in trying to make an omelet without cheese). I never realized how often I must take a little “taste” off the kids’ plates while I am fixing meals until today when I couldn’t.

Batman and the Joker joined forces today!

Jake had his Halloween party at school day. They wore costumes and trick-or-treated to all the classrooms and offices. He was Batman, of course, and his little best friend at school, Spencer, was the Joker. Too funny. Hilariously, he insisted on wearing his new Superman pajamas under his Batman costume so when he took it off, he was still a superhero! Imagine if Batman could really fly, instead of just gliding, and had x-ray vision in addition to that Batarang… talk about superpowers!

Last night, when I was picking up Tanner’s room before bedtime, I found a little piece of paper on her bed with “Wish List” written at the top. Tanner had written 10 things that she wished for. Most were cute things that any seven-year-old would wish for like “more Silly Bandz” and “All the Build-a-Bears I can make.” But, what broke my heart was #1 on the list… “No More Leukemia.” Further down the list, but not far behind, written in a second grader’s careful scrawl, was, “No More Medisun.” It solidified for me my suspicion that no matter how much Tanner seems immersed in school and friends and play rehearsals, leukemia is still top of mind for her. It still dominates her life.

John and I recently had a conversation about Tanner and I expressed my concern that all this fund-raising and cancer awareness stuff we are involved in could cause her identity to be wrapped up in having leukemia. John said, “It already is. How could it not be?”

And, he’s right, of course. How could a child endure the type of medical treatment she has had; be told all the time not to touch something, eat something or do something because she might get sick; and know how much longer it will go on, without it becoming an integral part of who she is? It’s become a part of who we all are, really.

And, now, ever so slowly, cancer is becoming a part of who I am. For the next two weeks, I will be reminded every time I choose something to eat, that I have cancer. I will cook and freeze food so my family will not have to cook while I am out of pocket. I will frantically try to do all the laundry and cleaning and grocery shopping I can do to leave the house in good condition before I’m not able to help anymore… again… for the third time in 3 months. No matter that it’s not a big, scary cancer like Tanner has… it’s still affecting us all. I can understand how leukemia is top of mind for Tanner.

If you remember, this summer I wrote about a film crew following us for a fund-raising video while we were at Vandy. The video is now available for viewing online at http://pediatrics.mc.vanderbilt.edu/interior.php?mid=7926. It’s a powerful testament to the blessing that the Children’s Hospital is to our community. Tanner appears at about 4:15 if you don’t want to watch the whole video (it’s about 8 minutes), although it’s worth watching. There are no words to describe how proud John and I are of her role in this video. From a child’s perspective, she tells it like it is. No adult explanations needed. Her child’s view is pretty mature, considering all she has been through.

As Tanner says, “Kids shouldn’t have to go through all this mess.”

Love,
Beth

Big News

Posted on by
7

October 26, 2010

Some exciting news has come our way this week… Tanner has been named the 2011 “Girl of the Year” for the Tennesee Chapter of the Leukemia and Lymphoma Society!!! What an honor! We’re so proud of her.

What does this mean? It means that the 14 or so candidates for Man of the Year and Woman of the Year will be raising funds in honor of Tanner and the Boy of the Year, Jack Woods. The kids will be LLS ambassadors at parties and events for the fund-raising campaign and even appear in ads. Tanner positively lit up when I asked her if she wanted to do it. Her duties will begin sometime in January and end in June.

Thank you all for supporting her during the Light the Night walk. Our unprecedented success as a “friends and family” team definitely played a huge role in Tanner receiving this honor.

Another piece of news is that I am starting my low iodine diet Thursday in preparation for receiving a radioactive iodine treatment in a few weeks… ugghhh. This radiation treatment is a pill that I take at the hospital and then I can’t be around anyone for five days (and the kids for eight days) while my body is ridding itself of the excess radiation. The iodine is absorbed into any remaining thyroid tissue, along with the radiation, and the idea is that it kills any remaining thyroid tissue, hopefully decreasing the chance of cancer recurrence. Thyroid cancer can recur at any time, even 20 or 30 years later, so I will be tested every year for the rest of my life, essentially. I’m actually relieved that they recommended the radiation… I just want to get rid of this stuff.

Once again, John will have to do it all… work, take care of the house and take care of the kids. I feel so helpless that he will have to do all this… again. I know I have said it before, but I will say it again… cancer sucks.

The low iodine diet is interesting. Since most salt we use in the U.S. is iodized, almost all processed foods are prohibited. No soy, dairy, seafood of any kind, etc. It made for an interesting shopping trip. Thank God for my friend, Beth. She spent all day yesterday baking bread, rolls, muffins and crackers for me from the thyroid cancer cookbook so that I wouldn’t have to survive without carbs for the next two weeks. Who has friends like this? I figure with bread and salt-free natural peanut butter, anyone can make it.

We’ve had a good week so far. Tanner’s energy seems to be back full force and she and Jake are amped for Halloween. Next week, she has a lumbar puncture with chemo injection, so that is looming over our heads, but we are trying not to think about it too much.

Tanner’s school is doing “Pennies for Patients” again in her honor. It’s a LLS fund-raising campaign where kids bring in change from home to benefit LLS. Moore Elementary continues to support our family in ways we never imagined.

I’m going to relish my last day of processed food tomorrow. I’ll miss pizza most, but diet coke is allowed, so I’ll make it!

Love,
Beth

Clinic Day #42

Posted on by
3

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