Category Archives: difficult things

Right Day, Wrong Year

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August 6, 2010

It’s August 6 and I know I should be grateful that Tanner’s made it through 14 months of chemo and only has one year left, but I can’t help wishing it was August 6, 2011. Today marks exactly one year left of chemo treatment. Even Tanner didn’t know exactly how to feel about this.

John brought home a cake that said… “Go Tanner! One more year!” Tanner was happy for the cake, but at bedtime I asked her how she felt when I said that one year from today, she would stop chemo. “A little sad,” she said. “A year is a really long time.” See, “one more year” is not very inspiring. (see my “No More” post from last week)

So, we had a small celebration, not a huge one, and we’ll keep on keeping on.

Jake came home yesterday! Hurray for my little man being home! My parents brought him back and stayed the night and we spent the morning watching shows the kids did in the basement before they left to return home and get ready for some more grandchildren to show up at their house next week.

Tanner has some kind of weird cold virus that she is apparently fighting pretty well. She sounds lousy when she wakes up in the morning, but seems fine during the day and then feels a little bad again at bedtime.

We go in on Monday for another IVIg transfusion. IVIg is an immunoglobin transfusion that provides antibodies to help bolster her immune system. She had one back in February and it helped so much. She was catching one respiratory virus/infection after another and then once she had the transfusions, stayed pretty healthy the rest of the school year. I asked the doctor to check again before school started and, sure enough, her levels were even lower this time. Just didn’t think that was the best way to start the school year. She’s caught her fair share of colds/coughs/strep this summer and I think the infusion will help. It takes about three hours so we opted not to tack it on to her clinic day on Wednesday, since she is having her spinal that day and it is already a long day. So, transfusion Monday, clinic day Wednesday, first day of school Thursday. Busy week.

We’re going to let this day pass somewhat quietly… it’s the wrong year. August 6, 2011 though, look out. The celebration will be completely out of control.

Love,
Beth

Girl Time

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August 3, 2010

Tanner at Lookout Mountain

We miss Jake… we do. It’s so quiet and calm and girly around here. But, there’s something nice about it, too. It’s a little more grown up and less chaotic, and Tanner and I are soaking up our time together. Jake is in heaven at my parents’ house where they bought him his own set of golf clubs and take him to the golf course every day to hit balls on the range. Dad said he hit seventy-five balls the other night!

It has been so cute to watch Jake and Tanner miss each other these last few days. I forget how much time they have spent over the past year and, despite normal sibling squabbling, how close they are. Jake told my Mom and Dad that Tanner was his “fweind… and my sister.” And, today when we skyped him, he said, “when I get home I am going to give you a motorcycle… a purple one!”

Then, today, at quiet time, Tanner took a little create-a-book kit and wrote him a whole book that told him she loves him and that he is “the best brother” and he is going to be a race car driver when he grows up. It is adorable and something I will keep for him for the rest of his life.

I’m feeling stronger and better every day. I’m still turning my whole body to look to the right or left, but I’m driving and not in real pain anymore.

Yesterday, Tanner and I went to buy all her school supplies then laid on the sofa and watched movies. Today, we went to the movies with friends, had lunch out with Aunt Kim and bought some sneakers at the mall. After a rest at home, we did a late afternoon swim at the neighborhood pool (I sat, she swam) and ran into some friends. Tomorrow, Tanner has requested to go to Sweet and Sassy for a pedicure, but we may have to settle for a manicure. She has an open cut on her toe and soaking in one of those tubs might not be the best idea germ-wise.

She’s been feeling pretty good these days. Some sporadic stomach upset, but lots of energy and no leg pain. That will all change next week. Wednesday is dreaded Lumbar Puncture day. We are switching clinic days from Thursday to Wednesday to follow our doctor. Wednesday she will get her Vincristine through her port, start her five-day pulse of steroids and get methotrexate injected into her spinal column. She has already started worrying about it and is asking every day how many days until then. The next morning after all this chemo, she will have her first day of school. Yeah… it sucks, but what are you going to do? Hopefully, we can be proactive with the anti-nausea medicine this time and she won’t get so sick. I just think it seems unfair that it should be such a joy for her to be able to be there for the first day of school this year after missing the first seven months of school last year, but she may feel like crap and it will be ruined by this rotten disease… again. This, in a nutshell, is cancer… unfair on so many levels.

Jake comes home on Thursday with my parents who will stay a few days (Happy Anniversary tomorrow, Mom and Dad!) to help out before they go back home. Last chance for all things girly tomorrow…

Love,
Beth

No More

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August 1, 2010

I spent most of today alone in the house, resting. John took Tanner and John to Chattanooga, where he met my parents and handed Jake off for a couple of days of special Grandmom and Grandad time. He and Tanner then went to Lookout Mountain and did Rock City. They had a ball and came home very tired. But, we all miss our little man already.

As I was resting on the sofa watching movies, I was feeling a little sorry for myself. Oddly, because I feel pretty good, but my neck is still too sore for me to stay up very long without it starting to hurt; it feels much better when it is resting against a pillow or the sofa. But, because I feel good, I’m a little stir crazy and tired of looking at the inside of our house.

I found myself thinking, how many more days until I can get back to my normal routine? And, then I thought, how many times must Tanner have felt this way? How many times must she ask herself, “How many more days until I can get back to being normal?” How many more times will she have to go to clinic? How many more times will she have to let them put that needle in her chest? How many more times must she be terrified she won’t wake up from the sleepy milk? How many more times will she skip dinner on Friday night because of her Thursday night dose of methotrexate? How many more fun things must she miss because her counts are low? More, more, more…

How long must this journey feel to her? I can’t imagine. I know how long it feels to me and I’m only sitting on the sidelines. Five days of neck pain has inspired me to feel sorry for myself. What would fourteen months of chemo do to me?

I’m going to try to remind myself how I feel today the next time I ask Tanner to suck it up and just take her chemo without complaining. She has every right to be sick of this. And, I’m going to stop telling her, just one more year. It’s not an inspiring comment.

Love,
Beth

Clinic Day #37

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July 15, 2010

Hurray for counts above 1,000!!!! Finally!!! Tanner’s neutraphils were at 1,500 today, which means she can have salad and go to a restaurant again! She was very happy.

Mercifully, we had a pretty quick visit today and got her back to theater camp by noon. She is so excited about tomorrow’s performance. I keep trying to fend off the bad thoughts that keep creeping into my head when I remember that she was super excited last time as well and woke up sick that morning. I can’t shake the feeling that we are not quite home free yet. I’m trying to let hope win, though, and think positively.

Today at clinic, we were once again accompanied by Ms. Donna, who is videotaping Tanner’s clinic visits for a fundraising video for the hospital. It’s sort of like being on a reality show. Tanner had a little bit of a hard time acting like herself today with the camera there, but forgot about them long enough to sing “Day by Day” with the music therapist in the infusion room. She asked me to sing with her at first, then got confident and asked me to stop singing with her (lol) so she could take her act solo. She is singing that song in her performance tomorrow and she has a solo at the beginning of the song.

We had a sobering moment in the waiting room before being taken back. A little boy, maybe 5 years old, walked through the waiting room. His hair was gone and he had that familiar gray look kids get when they are taking a ton of chemo. He also had a feeding tube taped to his cheek and I detected a familiar little limp that told me the chemo was affecting his legs. Tanner watched him walk through and then looked at me and said, “That boy is taking everything.” I nodded and watched a look pass over her face that a 7-year-old shouldn’t have. In that fleeting moment, I knew she understood the seriousness of this cancer business, the gravity of the potential consequences of this disease and it’s treatment. I pulled her to me and hugged her tight with tears in my eyes. And then it was gone. She giggled and said, “Stop squeezing me!” The child was back.

Love,
Beth

Fireworks and Fireflies

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July 4, 2010

Do you remember the magic of fireflies when you were young? The wonder of a little bug that comes out at night and lights up the darkening sky? Tanner and Jake almost never get to see them. We put them to bed so early, it’s still light out.

A couple of weeks ago, I bought some bug catchers and some butterfly nets so we could catch fireflies. I bought six of them so that when we had Lily and Madelyn’s families over for a cookout, we could stay up late and they could all catch some. That would have been last weekend, and the kids were really excited about it. Ironically, as would happen only when you try to get three kids with leukemia together, one of them ended up in the hospital. Little four-year-old Madelynn had a fever and low counts and we ended up canceling until everyone could come. Tanner was extremely disappointed.

Tonight, after having a great time decorating our bikes and riding in the Fourth of July bike parade in downtown Franklin, we planned to go to Corinne’s house to catch fireflies and, hopefully, see a few fireworks in the backyard. We set out with glow necklaces, silly string, bug catchers and butterfly nets in tow. The kids waited and waited for the fireflies to show up, and finally, they did.

They all ran around catching them in their nets and putting them in their bugcatchers. Tanner ran to me, elated that she had caught five fireflies. Then, she tripped over a jump rope and fell face first on top of her bug catcher. The bug catcher broke apart and fireflies streamed out into the sky. Tanner screamed; we thought at first she had hit her port and hurt herself, but she was hurt in a different way. Her little heart had endured as much disappointment as she could take. She grasped at the fireflies and sobbed as she watched them get away. There was no consoling her. I picked her up and hugged her to me and took her inside for a moment to try to calm her down, to tell her that there were lots more chances to catch fireflies this summer, that we could put hers in Jake’s bug catcher and take them all home with us. Nothing worked. She wasn’t crying about one disappointment; it was ten, maybe twenty, disappointments wrenching from her body in loud high pitched sobs.

She was mourning all the lost opportunities, all the times she has been told to be brave, that we’ll get to do it another time, that we can redo theatre camp, that she’ll get to go back to school eventually, that there will be another birthday party, another class trip, another chance to sing in the church choir, another dance lesson, another beach trip with my family.

Sometimes it is too much disappointment for an almost seven-year-old to handle. So many opportunities that disappear into the night like lost fireflies.

At home, we watched fireworks from the windows. She wanted to go outside and catch more fireflies, but she and Jake were exhausted and it was late. I promised her, once again, that there would be other opportunities. That we would invite friends over one night and catch fireflies in the yard. Just like I have promised her so many other things that will return to her once this disease has left our lives for good. Two-and-a-half years is an eternity to a child, especially one that lives on the edge of constant disappointment. It’s just too long.

Despite the meltdown, the night turned out okay. We returned home to find poor Domino in his crate barking furiously at the “intruders” that were making such loud booming noises. When we opened the crate door, he barreled out growling and barking, skidding around the corner to the front door, looking for the bad guy that might hurt his family. Love that dog. We took him down in the basement, where it wasn’t as noisy, and everyone played for a few minutes. Then, we watched some fireworks out the windows and went to bed. Turns out Jake and Domino feel similarly about fireworks. Both of them only like to watch them from inside; outside they are just “too woud.”

Luckily, I can recreate firefly catching any night of the summer. And, just like she always does, she’ll get over it. I just wish she didn’t have to.

Love,
Beth

She Didn’t Make It

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June 11, 2010

Tanner told me in the car on the way home from the pediatrician’s office this morning that it was the worst day of her life. I believed her. She woke up this morning with a red, swollen throat and a quick trip to the pediatrician’s office confirmed that she has strep throat. Say goodbye to her theatre camp show today.

In a cruel twist of fate, it was not the risk of her catching something, but the risk of her giving something to someone else that kept her from doing something she really wanted to do this time. It was another disappointment in a year of crappy disappointments. I heard her in the back seat of the car talking to herself while I was on the phone with the clinic, sobbing, “Another year… I have a whole year more of this… I can’t do it, I just can’t.” Talk about heartbreaking. I don’t think I’ve ever felt so horrible about making the right decision before.

She was pretty mad at me for a while. She kept telling me that the doctors were not the boss of me and that I could just do what I wanted because I was a grown up. I told her that she was right and I cried with her, but said I still had to do what was right and it wasn’t right to knowingly expose other kids to strep.

Then, I had a brainstorm! There were other dates for dance camp and she could go again! We drove to the theater where the performance was being held to tell the director she couldn’t come. Sure enough, they said she could come to another camp and do the show then. Tanner cheered up considerably and felt a lot better. We decided that maybe it was cool to be able to go to camp twice and that she might make a whole new group of friends.

So, it was still a bummer, but a little less so. She’s feeling pretty good for someone with strep throat. It’s a little worrisome with her counts so low, but so far, no fever. We’re trying to keep her and Jake separated so he doesn’t get it, too, but it may be too late.

Thanks to Jan Williams School of Music for being so understanding of Tanner’s unique situation, and for giving a little girl a second chance at her dream.

Love,
Beth

Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

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June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.

Love,
Beth

Clinic Day #33

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May 27, 2010

Some clinic days go well, others don’t. Today… not so much. It was Tanner’s once every three months lumbar puncture where they take spinal fluid to test for leukemia cells and inject chemo (methotrexate) into her spinal column. This is because the Central Nervous System (CNS) protects itself from the chemo injected into her blood stream or taken orally. Therefore, leukemia cells hide in the CNS like devious little monsters and come out when the coast is clear. Injecting chemo directly into the spinal column kills them where they live and, hopefully, prevents the leukemia from coming back. Having CNS leukemia is a serious thing that necessitates some pretty serious “super chemo.”

Tanner hates having the lumbar puncture. It’s not the LP itself, but the fact that she has to be put to sleep that bothers her. It’s the only thing through all of this that she really has a big problem with. She worries about it for days ahead of time and today was one of our worst experiences. She broke down in the pre-op room and held the end of her access line refusing to let them give her Versed to calm her down. We ended up getting them to put a longer line on her port and they hid behind her while they injected her line with propofol so she didn’t know it was coming. Right before she went out, she looked at me with panic in her eyes and said, “It that the sleepy milk?” She could feel it going into her port.

It’s so sad. There’s no reasoning with her about it. I think it’s the place she has chosen to put her anxiety about all of this. She is brave about having her port accessed, about getting chemo, about all kinds of other things, but this is where she harbors the anxiety she swallows from all of it. Thankfully, it’s only once every three months, but next time, we will give her anxiety meds before we leave the house… it seems like the kind thing to do.

She usually wakes up from the propofol pretty well, but didn’t today for some reason. She couldn’t wake up and didn’t feel well. In the car on the way home, she got pretty sick. I assume maybe the methotrexate LP did it. It usually doesn’t make her sick, but IV methotrexate does. Poor thing.

So, not such a good day. Hopefully, she’ll feel better tomorrow. We start steroids tonight… just more fun.

Ughhhh.

Love,
Beth

Between a Rock and a Joyous Place

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February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.

Love,
Beth

Counts Update

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February 18, 2010

I didn’t actually run down the street screaming pulling my hair from the roots, but I wanted to. Tanner’s counts were up, but barely. She’s at 430… anything below 500 is considered severely neutrapenic and below 1000 is neutrapenic. Carie assured me it is normal to have this happen sometimes and that after all the chemo she has taken, sometimes it takes the body a while to recover from a counts hit. So, same old, same old restrictions and come back next week for her monthly clinic visit. Still no oral chemo, but they will give her a dose of vincristine and she will have a lumbar puncture with methotrexate next week, regardless.

Stick a fork in us.

Love,
Beth