Feeling Better

May 28, 2010

Tanner slept for 13 ½ hours last night. She woke once for zofran for nausea and once for oxycodone for generally feeling crappy, but awoke this morning feeling pretty good and stayed that way all day. All the same, we slowed it down today. Ran errands in the morning and hung around here in the afternoon, painting and making up Star Wars plays. We ventured outside for about 10 minutes before it rained on us and forced us back inside, which was A-okay. I think some rest was a good idea.

So far so good with the steroids… she usually doesn’t feel bad until about day 3, although generally we’ll see some mood swings and emotional behavior on day two, which will be tomorrow. They’ve upped her chemo again; her counts were at 1700, which is still too high, so they added one pill to her weekly five-pill dose of methotrexate. That puts her at 100% dosage for both 6MP and methotrexate, which is the goal. I don’t expect her to have boatloads of energy or feel particularly well while adjusting to the change, though. Methotrexate seems to have a greater effect on her than the 6MP; in fact, it’s what made her so sick yesterday. Hopefully, she’ll adjust and be feeling good in time for theater camp.

Tanner had strawberries today for the first time in a very long time. She rolled them in whipped cream after dinner tonight and talked about eating strawberries and whipped cream all morning long tomorrow. Sometimes it’s the small things that matter the most.

John and I sat tonight looking at old videos of Tanner and Jake when they were really little. Tanner was so articulate at such a young age that hers are really funny, because you can really understand all the nonsense she is spouting. We laughed and laughed at some of the things she did and then I saw Millie, our beloved and deceased border collie in one of the videos and teared up. Well, once I started I kept on. I sat watching a video of Tanner being hugged by Pluto in Disney world. She is not quite three in the video and has the most beautiful, long blond hair. I found myself crying with my hand over my mouth trying to hold it in. She was so happy and sweet and innocent. John looked at me, puzzled. I just said, “You hope for so much for them when they’re little like that. We just would have never dreamed she would end up with cancer.”

I think, in retrospect, what I was crying about was the innocence of our family at that time. We had so much fun on that trip and we had no reason to ever believe anything but the best would happen for us. Every parent’s worst fear is that something awful will happen to their child. But, for us at that time, and for most people, it is a distant and improbable thought. I think once the improbable becomes reality, you lose an innocence you once had as a parent. Instead, you wake every day thinking that that “awful thing” that once seemed distant, now looms omnipresent in your life. Any day could be THE day, and anything is possible.

Some days, I only think about it for a fleeting moment. Like today, when we were at Sam’s Club eating lunch and Tanner got up to go get some napkins. I watched her as she walked away from our sanitized table and saw her, ever so briefly, drag her hand across another table as she walked by. In that moment, I thought, “Oh please, don’t touch your mouth, please.” Because that germ on that table could be the one her body won’t be able to fight. She didn’t touch her face, and when she returned to our table, I gave her some hand sanitizer and the moment was gone.

Both John and I went through a time when we were mad about that loss of innocence. Mad that we could no longer just send in a donation when we got those St. Jude’s mailing labels and not think about it again until next year. I now see too many children suffering and it is on my mind much of the time. We’re no longer mad about it; we’ve accepted it. But still, it sucks all the same.

I’d give anything to go back to the way I felt at that moment in Disney, but I know I won’t. I know I’ll never look at things the same way, though I look forward to a time when I won’t have to contemplate my child’s life on a daily basis.


The Breaking Point

December 16,2009

Tomorrow is a pivotal day. We go to clinic in the morning for counts. The results will likely determine the course of our holidays – joyful and with lots of family, or a little less joyful and by ourselves at home. I feel like this will be the breaking point for Tanner… and possibly for me, too. We want — no we need – a change of scenery and a chance to forget about cancer, even if only for a few days. The thing is, Tanner feels really good these days. It’s hard sometimes for me to remember to give her midday medicine because she seems so normal. But, still, we’re reminded every day by the places we cannot go and things we cannot do, that she is not normal. Being able to spend the holidays among family would be as close to normal as we have had since diagnosis. I don’t know how I will console her if her counts are too low to go.

The stress of everything depending upon this count check has definitely gotten to Tanner. She has begun in the last few weeks to act out and has steadily gotten worse. We haven’t seen this type of behavior from her since her stint of acting out after diagnosis. What seemed to help her then, and I believe will help her now, is our play therapist, Allison. It is so weird, but without ever talking to Tanner about leukemia or her difficulties with it, Allison is able to help Tanner work out her feelings through play. She says Tanner is very transparent in her play. Last week, Tanner forced animals and dolls to drink “toilet water,” telling them they had to do it and if they didn’t, she would have to hold them down and make them drink it. I think toilet water is actually a really good analogy for chemo.

Tanner is also anxious about moving. What started out as a really positive thing has turned into a source of anxiety. She is nervous about leaving her friend, Corinne, and about meeting new kids in the neighborhood when she has no hair. She has also started obsessing about the dog we lost several months ago, Millie. She writes her notes and puts them on her ashes urn and talks about her all the time. She is afraid to leave the room I am in and won’t go upstairs without either Jake or me with her. She is still sleepwalking and having nightmares, although she is sleeping better than she was several weeks ago. It’s heartbreaking to watch her self-destruct this way. She is eaten alive by anxiety and it manifests itself in bad behavior.

So, please pray for us in the morning. We need good counts. We need a break. I don’t want to have to tell her, yet again, that we will miss something important to her.


Clinic Day #18

October 14, 2009

We had a smooth day at clinic today. Tanner was totally nonchalant about having her port accessed and we actually had a pretty good time joking and visiting with all the nurses, doctors and the childlife specialist.

She got a dose of Vincristine and her last dose of Doxirubicin (red chemo, as Tanner calls it), thank God. She handled it really well, though, and was definitely not as sick this afternoon as she has been before. It seems like she acclimates to the chemo over time and it has less and less effect each time. She was very tired, however, at bedtime and her right leg is hurting her, so she was limping.

The biggest blow today was the doctor telling us we could not get a new dog any time soon. He wants us to get several months into long-term maintenance before introducing a new animal into the house. We were under the impression that puppies were the real issue and so we had begun to look at year-old dogs from rescue. Looking for a dog was a great distraction for all of us… it gave us something to think about besides cancer and something fun to look forward to. Tanner was pretty bummed and the doctor said, “You can hate me for it, Tanner; it’s not your Mom’s fault.” She just looked up and him and smiled and said, “I won’t hate you, Dr. Mixan, I’ll just hate the leukemia.”

I think I’m the most bummed of all. I was really looking forward to getting a new dog and I’m just mad that this stupid disease takes and takes and takes from us.

On a more positive note, the Great Pumpkin visited our house today while we were at clinic and decorated the front of our house for Halloween complete with a ghost, spider webs and giant spiders. Thanks, Aunt Kim… we know who you are! Tanner and Jake loved it.

I’m wiped out. I don’t know why clinic days, no matter how smooth, make me so tired. Something about seeing all those little pale faces and bald heads exhausts me. It’s just not fair and it never gets any easier for me to realize how many kids there are with cancer. Some look so sick it just breaks your heart.

Good grief, time to go to bed. This post is getting depressing.


You Can’t Stop Progress

October 13, 2009

Tanner and I dropped Jake off at school this morning and, after stopping at Sonic for our usual drink orders, headed to Sweet and Sassy for a haircut. She has been feeling really good the past two days and I wanted to do something special on our day together. Tanner has not had her hair cut since long before she was diagnosed, and it certainly didn’t seem prudent to cut it while it was falling out, but since she has held on to it so well, I thought it could benefit from a little trim to make it look prettier.

Amazingly, the hairdresser told me that Tanner is growing NEW hair. Sure enough, I look and little sprouts of hair are standing up all over her head. How can this be? With as much chemo as she is processing at the moment, how can something be thriving?

Then, I thought about how in some ways, I feel as if we have been standing still for the past 4 ½ months. Waiting… lots of waiting… for doctors, for medication, for the worst of this to be over so we can try to pick up our life and resume some normalcy. But, unbeknownst to me, Tanner has not been waiting… she has been growing. She is too little to understand what this process should be doing to her body, to her life even… so she does the only thing that kids know how to do… she grows.

Her homebound teacher, Mrs. O’Hara, told me yesterday how pleased she is with Tanner’s progress lately. The two of them have found a rhythm that, if anything, is allowing Tanner to progress in her schoolwork at a faster pace than traditional schooling would allow. Her reading is improving by leaps and bounds and she is a spelling demon. At a time when I worried that she would fall behind her classmates, she continues to shine and grow.

I have also noticed a new maturity in the past few weeks. She seems calmer, somehow. Some of the frantic energy that gets her into trouble seems more in check than normal. She seems to be thinking more before acting or speaking. I haven’t had to discipline her in quite some time and it is nice for it to be so peaceful.

So, while I’ve been busy trying to just hang on until Long Term Maintenance, Tanner has quietly moved on with things. I could take a lesson.

I went to a Board Meeting for Jake’s school tonight and it was so nice to talk about something other than cancer. I probably need to make a better effort to keep growing during this time, too.

Over the weekend, Tanner received cards from a 4th grade class at her school and from her own 1st grade class that meant the world to her. To see that she is missed and the kids want her to come back made her light up. She read the cards over and over again, smiling. It’s the first time, I think, that she has felt missed at school.

So, we’re putting last week behind us… it was rotten, but we made it and that’s what counts. I am a firm believer that it doesn’t matter how messy it looks while you’re making it through, it’s the fact that you came out the other side that matters.

Now, I am going to sleep in my daughter’s room… again… because she can’t sleep without the dog. Anybody have a sleepy dog for rent?


We Almost Made It Through Sunday

October 11, 2009dec 08 015 Just when we thought we had gotten through this rotten, unending week, our beloved border collie, Millie, died today. She was 12 and over the past few months, had seemed to be getting old quickly. Today, she suddenly was unable to move and John quietly took her to the emergency vet so as not to upset the kids. The vet said she had several cancerous tumors and one had ruptured causing internal bleeding. John called to say she would only live an hour at best and I piled the kids in car and left a check taped to the door for the pizza guy who was on his way. In the car, I explained to Tanner that Millie was an old dog and had a cyst that was bleeding in her tummy and that the kind thing to do was to keep her from suffering any more.

Together, the four of us said goodbye to our sweet, gentle, Frisbee-loving dog and watching her pass peacefully. Tanner sobbed while Jake patted her and said, “Bye, bye Millie.” This sweet dog slept at the end of Tanner’s bed every night to keep away the monsters and keep a child with an active imagination “safe” at night. She was intelligent, loyal and the model of good doggy behavior. She is already missed.

Sadly, Millie’s passing is just one more loss for Tanner. Millie was her security blanket at night and she has been up 4 times already in the first 2 hours after bedtime. John will go sleep in her room tonight; if I go, I will wake her with my coughing. It was the worst possible time for this to happen (not that there’s a good time for your dog to die) when she most needs comfort and security in what is often a very scary world for her. I’m not sure what we will do.

John is devastated and keeps questioning whether he did the right thing by not opting for a surgery option which the vet said would only give Millie a few months. It would definitely have been nice to have some time to prepare Tanner for her passing. It was just so sudden (it all happened in a matter of an hour) and I think it’s hard not to second guess a decision you feel you made in haste, even if it was the right one.

We’re all tired from the week behind us, with nothing to really look forward to this week.

As John said when I came down from putting Jake to bed, “I want a do-over.” I think he was talking about the dog, but I was thinking about 2009.