Category Archives: disappointment

Clinic Day #52 — a Colossal Mistake

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April 20, 2011

Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.

Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.

We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?

Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.

We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.

Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.

I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.

Love,
Beth

Stumbling Blocks

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March 23, 2010

Tanner woke up on Sunday morning with a cold or allergies, hard to tell which. She sneezed all day and was stuffy. Monday morning she seemed no better so we kept her home from school and gave Claritin a try. She didn’t sneeze as much and, aside from a little tired patch in the afternoon, seemed fine. This morning, still stuffy and we sent her to school. They called me by noon to pick her up. Her teacher said she didn’t have her normal energy level and that she asked to go home during recess.

She actually didn’t seem that wiped out this afternoon. She was actually really frustrated that I wouldn’t let her have a playdate. I kind of think she may have allergies, but who’s to know and wouldn’t it be a stupid mistake to send her into the germ fest that school is when her immune system in compromised. Truth is, we don’t know what her counts are. They increased her chemo two weeks ago and that alone could be affecting her counts. Also, you never know what a cold could do to her. We’ve seen infections and viruses make her counts go sky high and we’ve seen them wipe them out. So, difficult to make any kind of educated guess about the right thing to do without a true counts check.

We go in for our monthly clinic visit on Thursday so we’ll keep her out of school until then to be safe. If her counts are good, she can go to school Friday, but she’ll start steroids Thursday morning, so who knows whether she’ll feel like going.

It’s so hard to make a good call in this situation. Inevitably, you go with the choice that keeps her from ending up dying from some cold gone bad, even if it means you feel like you’re slaying her psyche in the process. Seriously, this is the way we think. She senses my lack of conviction in the decision to keep her at home and begs and wheedles for playdates, school or anything that gets her around kids. I don’t understand it, so I don’t know how she’s supposed to.

I feel like this is a blow I had prepared myself for and I don’t feel too surprised by it. Discouraged maybe, but not surprised. I hate that she’s having to stay home most of the week after such a small taste of freedom, but I’m also thankful she got to have last week at all. I’m more discouraged that, after the IgG transfusion, she still seems to have caught a respiratory virus. Hopefully, that’s not the case and it’s just some spring allergies.

Tanner’s handling the disappointment okay on the surface, but is still having some behavior issues which indicate all is not as well as she claims it to be. We have an appointment with the play therapist who, mercifully, came back from vacation. Hopefully, that will help.

On the agenda tomorrow… maybe a field trip to Aunt Beth’s.

Arggghhhhhh.

Love,
Beth

We Need a Break

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February 24, 2010

Tomorrow is Tanner’s clinic visit. She will get an IV dose of Vincristine, have a spinal tap with methotrexate and, of course, get counts. I had this hope that she would be high enough that she could at least go into school tomorrow for her class photo. I don’t want her to look at her yearbook and see her whole class there without her. I’m not saying I thought it would really happen, but I hoped it might.

This morning, Tanner has come down with the cough that Jake showed up with yesterday. Of course. It might be fine. Her counts might be high enough for her to fight it off; she’s done it before. Or, it might not be fine. Her counts might take a nose dive again, she might get a fever and have to go to the hospital for antibiotics, she might get pneumonia and become an inpatient. Count on nothing when leukemia is involved.

And, that’s just it. Count on nothing. Hope for nothing. Only I can’t help it. I hope. I just do. I try not to. I tell myself it will end in disappointment. I have learned not to share my hope with Tanner so she is not disappointed too. But, I can’t seem to live expecting the worst. It’s too bleak.

So, I think I’ll be disappointed again tomorrow. I think I will probably not hear that she can go have her picture made with her class. She will not know to be disappointed now, but she will be later when she sees the class photo she is not in.

As one of my cancer mom friends said recently, long-term maintenance is better, but it still stinks. Amen.

Love,
Beth