Monthly Archives: March 2011

Making Lemonade

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March 25, 2011

It’s been spring break this week for both Tanner and Jake. Since Tanner had chemo this week, we didn’t go anywhere, but decided to make the most of our staycation by scheduling a fun activity every day.

Monday, we played in the gorgeous spring weather we were having earlier this week (not so much now!) at a playground with some friends. Tuesday, we went to the Tennessee State Museum. They were having an Egypt exhibit, and Tanner is fascinated with Egypt. Turns out, I think we enjoyed the state history even more. Tanner and I have been reading the Little House on the Prairie books, so it was fun seeing the pioneer history fleshed out at the museum. Tanner kept recognizing things like a butter churn or a yoke for oxen that we had read about in the books.

Jake totally cracked us up because he was making up a story for everything he would see, and tell it in this really serious voice.

“Let me tell you about this,” he would say. “This is boat and it’s tied up and the ropes made it not sail right.”

“Was the boat okay?” I asked.

“Nope, it sank to the very, very bottom of the water with the fish,” he said seriously.

Tanner and I started asking him about everything we saw, just to hear what he would make up.

Wednesday was clinic day, but we made plans to see a movie in the afternoon with friends. On the way home, we stopped to get gas and buy some candy for the movies (yes, I realize that’s against the rules). Unfortunately, when I tried to start up the car to go, it wouldn’t. The kids and I got out the car (in the rain of course) and walked across the street to a Firestone and got them to tow my car, and called John to pick us up. I had seriously had it at that point. But, the men at Firestone were so nice and John was, as usual, like a breath of fresh air. He cheered up the kids and resuscitated me with his infectious enthusiasm. “We’re making lemonade, people!” he yelled in the car. “I never get to see you guys in the middle of the day… I love it.” We went home to let the dog out and then dropped John off at work, still on schedule to make our movie… until Anna Lynn called to tell me it was sold out… really.

Now, I was just mad… until I started laughing. I mean, seriously, what else can you do at this point? I had worked too hard to get us to this stupid movie. Thankfully, our friends were game and we found another movie theater playing the same movie an hour later. We prevailed!!! We filled almost a whole row of the movie theater and the kids laughed out loud at the movie.

Thursday, the kids got a much-needed break from one another with separate playdates. Tanner went to a friend’s house and Jake had a friend from school over. Then, Tanner, John and I went to the Leukemia and Lymphoma Society Man and Woman of the Year campaign kickoff where Tanner was officially announced as Girl of the Year along with Jack Woods, Boy of the Year. They debuted the video we had shot a month or so ago. It’s a great video, although Tanner is uncharacteristically shy in it. This was taken not long before we decided that she needed medication for anxiety. You can see her in this video regressing to babyish talk; very unlike her. Just underscores for me that we made the right decision.

In contrast, last night she was working the room, full extra-large personality in play. The event last night was pretty grown up at a nice restaurant and at one point, John and missed her. We thought she was sitting at the table playing with John’s phone. Instead, we spotted her across the room, standing on a chair, talking animatedly to three men, who were laughing and talking back. Then, the photographer asked to take a picture of them. They did one serious shot and then Tanner got them to all make silly faces. John said, “Should we go ask what she was talking to them about?” I paused and said, “No, I think I’d rather not know.”

Here’s the video:

2011 LLS Boy & Girl of the Year from Nathan Thompson – Disegno Video on Vimeo.

And, today, we had big plans to see the marionette show at the downtown Nashville library. The Whitlers were meeting us there and everyone was excited. The kids were playing on computers in the library waiting for the show to start when we figured out they didn’t have a show today (something I did not see on the Website). But Ron Whitler (Tanner Time’s blog host), who is a long-time friend and from the same school of lemons as my husband, didn’t miss a beat and just said, “We’re game for whatever, let’s go to lunch.” So, we went to Margaritaville and had a great time.

So, I want to thank all the people who helped me make lemonade this week, including Tanner, who has been a trooper despite not feeling very well from steroids, and Jake, who never fails to make me laugh. I am truly blessed by the most amazing friends and family.

Love,
Beth

Clinic Day #49

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March 23, 2011

As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).

Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.

After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.

We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.

It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.

Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.

We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.

Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.

Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.

On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.

It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.

I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.

Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.

Love,
Beth

Clinic Day #48

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March 9, 2011

We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.

I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.

Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.

On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.

Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.

After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.

I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.

“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”

Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”

Tanner shook her head again.

“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”

“Yes,” she said with some little tears in the corners of her eyes.

“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”

My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”

By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.

I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.

On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.

Love,
Beth