Monthly Archives: February 2011

Better Days

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Things are looking brighter the last couple of days. After lying awake half the night on clinic day night worrying about the crazy amount of medicine that had put in my child in one day, and what the effects of that medicine would be, I woke to a very pleasant surprise… Tanner did not feel all that bad and… was pleasant. For the first time in months, she didn’t fight with me about getting ready for school… she actually smiled and said, “Okay, Mom.” Wow. Seems that anti-depressant works a lot faster than the doctors suspect.

After just three days on the anti-depressant, Tanner is a different child. John came downstairs on Friday night after putting her to bed and said with wonder, “She actually seems happy.” And right then we realized how much anxiety and fear and frustration and anger our poor child had been carrying around for quite some time. All the misbehavior (well, maybe not ALL of it) was really just misery. All the frantic, impulsive, over the top nuttiness was anxiety. I think her unhappiness happened so gradually, we just didn’t realize how bad it had gotten. It didn’t really look like unhappiness; it looked like combativeness. And, mercifully, it’s gone now, replaced with a peacefulness we haven’t seen in a long, long time.

Theoretically, it should only get better. She is on steroids and the extra chemo has set in and she doesn’t really feel all that great and even so, we see an improvement. Also, she is not even taking the full dose of the medicine; we will work our way up to that in a few weeks.

It makes me sad and happy at the same time. Sad to know how much all this has affected her and how heavy her burden has been. But, happy to know this is helping her regain her optimism and her true personality. It’s been a nice couple of days to hope for the best.

Then, today, another gift. Tanner auditioned last night for a part in Sleeping Beauty and today we found out she is going to be… wait for it… Sleeping Beauty (aka Briar Rose and Princess Aurora)!!!!! We couldn’t be prouder and she couldn’t be happier. We are so thankful to Act Too Players for believing in Tanner and giving her this chance. The play is in May… we’ll put out dates as soon as we know them.

Hope your weekend is as going as well as ours.

Love,
Beth

Clinic Day #47

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February 23, 2011

Just finished completely revamping Tanner’s medication spread sheet. It’s a week- long sheet that keeps John and I straight on morning, noon and night meds as well as her as-needed medications. It’s absolutely necessary. You can’t believe how complex it actually is.

But, today, they raised Tanner’s chemo quite a bit. Her counts were high at 2,200, but we’ve all been battling a cold virus for the past week so I didn’t think much of it. But, she’s also grown quite a bit lately and the chemo is calculated by body volume.

It pained me to give her so much medicine tonight… 19 pills and two liquid meds. I felt sneaky while I was getting it all together… like I was trying to put something over on her. But, what good would it do to tell her that they raised both her chemo and her steroids? It would only scare her. I’m terrified about what this will do to her counts. We go back in two weeks to check them. The middle of cold/flu/strep season is not the time to be neutrapenic.

We also got an additional med today – one we hoped to never have to ask for. Tanner was put on an anti-depressant today to attempt to control the anxiety that seems to be eating her up. She has been so agitated lately, has been having troubled going to sleep at night, doesn’t want to go to school in the morning and just seems really frantic. Together with Tanner’s therapist, Allison, we decided to ask Dr. Mixan, her oncologist, for some help for her. The medicine they put her on will take about 4-6 weeks to reach it’s full potential and they gave us some other meds to use, if necessary, in the meantime.

I have mixed feelings about giving her the anti-depressant. On the one hand, I’m relieved that she is getting something that should help her stop spinning – it’s painful to watch her be so angry and agitated. I think it is damaged her self-esteem to have her behavior so constantly corrected. And, frankly, either she needed to be medicated or someone was going to have to medicate me so I could be more patient. It has been a real struggle the past several months dealing with her. She did go to sleep tonight easily for the first time in weeks, so the drowsiness side effect of the medicine might be a real blessing for Tanner.

On the other hand, this is so far removed from anything you would ever hope for your child… a seven-year-old on antidepressants. It’s scary and disheartening, to say the least.

Putting an IV in Tanner's doll

So, having given all this sobering news, let me just say that clinic turned out to be fun today. We had to wait for long time for meds from the pharmacy so we went downstairs to kill some time and they had medical play in the lobby. The kids got to choose from decorating a little doll in a hospital gown or getting a stuffed animal and playing doctor with some real medical equipment. It’s such a therapeutic activity for both Tanner and Jake, both of whom know way more about medical procedures than any child should. Tanner got really into it and played even more when we got home, which is a healthy way for her to express some of her feelings about receiving so much medical treatment.

...and in Jake's bunny!

After playing doctor for a while, we ate some lunch and had some ice cream, picked up our meds and then came home. It made for a kind of long day at clinic, but I think it’s worth it for the kids to have some good experiences at the hospital to offset the not so good ones.

Please keep Tanner in your thoughts this week. Anytime her meds are increased, it takes a while to adjust and she feels pretty bad for a while. This is the most chemo she has ever taken and the highest dose of steroids, too, so I’m sure she’s not going to feel very well over the next week.

We’ve had some really good moments in the past few weeks, too, but I’ll save those for another night when I feel a little lighter and am not so tired.

Love,
Beth

An Army for Hope

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February 2, 2011

I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.

I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.

Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).

The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.

I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:

Tanner’s Story in Numbers

25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine

This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.

It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.

Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!

We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.

It was a great night to hope.

Love,
Beth