Category Archives: difficult things

A Setback

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February 2, 2010

I spent most of yesterday trying to convince myself that my glass is half full. It is. I know it is. But, there are times when it is harder to remember than others.

Lurking in the recesses of our recent good news about school was a cold Tanner was fighting. Yesterday morning, she woke up with her ear hurting. Rather than drive all the way to the hospital, I ran by the pediatrician’s office. They were awesome. They took us right back so we didn’t have to wait in the germy lobby and, of course, Tanner had an ear infection. They have been a long-standing problem for Tanner.

Our pediatrician called our oncologist, Dr. Mixan, who said he wanted Tanner to have a Rocefin shot in addition to oral antibiotics. Rocefin is a broad-range antibiotic that Tanner typically gets through her port any time we go to the hospital with a fever. “A shot?” I repeated. “What kind of s-h-o-t are we talking about here?” Not pleasant, she said. Tanner has a huge issue with shots, but has no problem getting a big needle put into her port in her chest (go figure) so we decided to go to clinic and get the antibiotic via her port. It took longer, but saved us a lot of trauma, screaming and holding her down.

It was a good thing we went. Her counts had dropped across the board. Her neutraphils dropped to 960 from 3300. Which, of course, means back on the restricted diet and no school until they go back up. Tanner cried. She had wanted a salad for lunch so badly. They did a chest x-ray, which we never heard any results on so I assume it was negative.

It’s hard for good news to be so fleeting. For the celebration to constantly be in so much jeopardy. I found myself wishing we had not made such a big deal about going back to school or about being able to eat whatever she wants. Less disappointment that way.

I think my disappointment must have been very visible. Tanner’s nurse, Cari, said gently, “It’s just an ear infection, Beth. She’ll get over it quickly.” And, she’s right. It could be so much worse. I had a pep talk with myself in the car on the way home. This is a long journey and I had no right to expect it to be smooth at this point. I can’t allow myself to be tired when there is so far to go. If I expect Tanner to keep fighting, I have to keep fighting.

So, it took all day (and I mean ALL day) to get to see the glass half full. It is. She’s alive and that, alone, is everything to be thankful for. But, more than that, we have joy. Even if it is fleeting, it is worth having. Living to avoid disappointment is not living at all and that would be a disservice to the fight that she is fighting.

She is not feeling real great this morning. It’s the last day of steroids (hurray) and that’s never a real great day for her. Add the ear infection and she is pretty miserable. We’ll lay low and, hopefully, wait for another celebration to come.

Love,
Beth

Both Ends

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January 27, 2010

Tonight, after Tanner’s lesson with Mrs. O’Hara, we decided to go to Chili’s to eat. John was at a work dinner and we were on our own. Tanner loves Chili’s; she’s always trying to connive some way to get us there to eat. So, we piled happily into the car and drove down the road for dinner.

While we were waiting for our food, Tanner kept saying how hungry she was. “When will our food be here?” she asked repeatedly. When it got there, it was piping hot and I began to stir Jake’s Mac n’ Cheese so it would cool off. I looked over at Tanner and asked if she needed help cutting her chicken, but she was staring off into space and didn’t respond. I watched her for a moment; she looked exhausted. “T… you okay?” I asked. “Fine,” she said. “I just need honey mustard.”

Between the time I asked the waitress for honey mustard and the time she brought it, I watched Tanner go downhill. The waitress set the honey mustard on the table and Tanner simply lay down on my coat in the booth without a word. I knew she couldn’t eat it. It was a moment lost.

Jake and I ate as quickly as we could, boxed Tanner’s food up and left without her ever eating a bite.

Now, it may seem ridiculous to care so much about one chicken dinner in the light of some of the truly awful things she has had to face over the past 8 months, but it’s just that it is such a metaphor for life with cancer. Get excited, look forward, anticipate… be disappointed. Watch everyone else around you get the thing you wanted so badly while you remember that’s it’s not for you… you have cancer.

She handled it better than I did, really. I cried about it later, which is so uncanny, because I almost never cry about cancer. It just seemed so unfair. Such a simple thing to want.

Anyway, the rest of the night went according to Murphy’s law. I carried Tanner into the house with her hand over her mouth, rushing to the bathroom, while Jake screamed from the car where it was parked in the driveway in the dark, “I’m cared! Mommy help!” Park Tanner in front of the toilet, run back out to get Jake. Set up Tanner on the sofa with a bucket and a towel. Frantically mix up some zofran to prevent nausea. Give Tanner the medicine while Jake hangs on to me screaming because the constipation he has been suffering from finally decides to give way. Clean up (nuff said). Carry Tanner to bed, dinnerless. Put Jake to bed, a pound or two lighter. Collapse.

Usually I only recognize the humor in this kind of situation in the retelling, but this was so ludicrous that I even started laughing in the midst of it. It wasn’t a cancer moment; it was just a motherhood moment, one that moms everywhere could appreciate.

Tomorrow is clinic day. John and I are anxious. Anxious that they will raise her chemo level. Anxious that she won’t get released to school. Anxious that she will get released to school and be exposed to all those germs.

Please pray for the right thing… whatever that may be.

Love,
Beth

Two Doors Down

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January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.

Love,
Beth

A Blizzard in Tennessee

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December 7, 2010

No point in posting yesterday… just would have been another steroid rant. But today was a totally different matter. It snowed… Nashville-style, which translates into a ½ inch dusting of snow! School was cancelled the night before (yes, before it even started to snow) and we expected to wake to 2-4 inches. Jake woke up first and he and I pulled back his curtain to peer outside hopefully, in search of the much- anticipated snow… NOTHING! Tanner was really indignant.

But, by mid-morning it had started to snow and we started the long process of suiting up for a snow walk. After getting officially bundled up, we met Corinne and the gang over at the school next door. The kids found some ice to slide on and traipsed all over the field, our friends’ golden doodle romping happily in circles around us.

We threw sticks in the river, jumped on icy patches in the field until they cracked, piled up sticks and pretended we were making a fire and were joined by some other neighborhood friends. I expected Tanner to peter out early since she doesn’t always regulate her temperature very well and because she had just finished steroids and had felt terrible and seemed weak the day before. But, as always, she surprised me. We stayed out, in sub-30 temps for more than an hour. Jake actually begged to go home first, but everyone stopped on the way home to pepper the neighbors’ driveway with snow angels. Jake had never made a snow angel before and was delighted.

We came home and had hot chocolate with a LOT of marshmallows. Jake skipped the hot chocolate and just ate a cup of marshmallows. Boy, can we make the most of a ½ inch of snow in Tennessee!

I, believe it or not, appear to have pink eye. I’m so disgusted to be sick in some way again I just can’t tell you. My immune system is pitiful this year. I think it makes a serious case for the effects of stress on your body.

So, we’ve made it through the first rough week of the month. Each first week for the next year and 8 months will be difficult – Vincristine, steroids, methotrexate. But, the next three weeks should be easier, so that’s something to be thankful for.

No school again tomorrow. Ice. Not that we would have gone to school anyway! But, that means friends at home to play with.

Love,
Beth

My Monthly Steroid Rant

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December 4, 2010

I wonder if a month will ever go by where I do not complain about steroids? I feel for those of you who read this blog; you must be saying to yourself, “Enough about those stupid steroids, how bad could they really be?” That’s probably what I would say if this were someone else’s blog and I were reading it.

But, I write here about what I know and about our daily life and I would be ignoring the elephant in the room if I didn’t say, once again, how much I hate steroids.

I came out of the bedroom this morning to my early birds, John and Tanner. Tanner makes fun of my “morning face” – eyes scrunched up against the light, shuffling walk, scowl. She and John spring out of bed at the crack of dawn each day, chipper and ready to go. But, this morning, I came out and Tanner said nothing. She didn’t even look up when I said good morning. When I made a spot for myself in the nest of blankets on the sofa, she just crawled silently into my lap and cried a little. Steroids. They’re back.

She did rally mid-morning and wanted to go to Target. She and Jake got Target gift cards from “Uncle” Larry and wanted to go spend them. Tanner wanted to use hers to buy a doll for her best friend Corinne who, unlike Tanner, did not ask for an American Doll for Christmas. Tanner wanted Corinne to be able to play dolls with her and was prepared to spend the entire amount on a doll for Corinne. When we got there, the dolls were on sale and she was able to buy herself something, too. As Corinne’s mom said, “She was being rewarded for her generous heart.” She’s so excited about giving the doll to Corinne.

Before we left the store, Tanner started not feeling well again. When we got home, she started to get out of the car and screamed in pain. Her leg was hurting from the steroids or the Vincristine – hard to tell which. I carried her into the house while she cried and said over and over again, “It hurts, it hurts, it hurts.” I put her on the sofa and went to the car to get our purchases when I heard a loud scream from inside the house – the kind that says someone is really hurt. I ran in and found her curled up on the hardwood floor, screaming. She had tried to go to the bathroom and fell on the way. Damn. I want to hold her and tell her it will go away, but I would be lying. We have to take the steroids for two more days, so it will likely get worse. So, I scoop her up carefully and take her to bathroom so she doesn’t have to walk and then I get her a dose of painkiller and tell her I hope it will help.

She spent most of the day in her room in bed watching TV. She just didn’t feel good. And, she won’t feel good again tomorrow. I told her I would take her to see Princess and the Frog after we dropped Jake off at school and she said, “I don’t think I’ll feel like it.”

We will repeat this cycle every month for another year and eight months. She will know that the pain and exhaustion will come back. She asked me today if she could use the “H” word to talk about steroids. I told her to let ‘er rip. “I hate steroids,” she screamed.

Throughout the day I would hear her get up and make her way slowly down the hall to the bathroom, wincing, crying out when it hurt particularly badly to walk. I would climb the stairs and scoop her up silently and carry her down the hall and wait for her so I could carry her back. There really isn’t anything I can say to make it better.

Recently, she asked me why the doctors made a medicine that made her feel so bad. “Why would they make chemo if it makes me so sick?” she said. The only answer to that question doesn’t seem appropriate for a six-year-old, but unfortunately, none of this is appropriate for a six-year-old. I told her that a long time ago, before they had chemo, people died from leukemia, so when they discovered chemo and realized that it could “fix” leukemia, people were happy to take it. They were happy to know that they would live. So, even though it makes people feel bad to take it, we should be thankful there is chemo at all. I tried to avoid the obvious, but as usual, nothing gets by Tanner. She said, very matter of factly, “Taking chemo is better than dying.”

So, I will probably continue to gripe monthly about these damn steroids. “Better than dying” just shouldn’t be good enough. I want to be grateful to these drugs, but oh, it is hard these five days of the month.

I know she will feel better in a few days, but it’s still so painful to watch her hurt and know we signed her up for it. Know that I administer the pill that makes her so sick.

Love,
Beth

Resting

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December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!

Love,
Beth

Home Again

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December 20, 2009

Tanner’s neutraphils were very elevated – 19,000 – indicating that she was really fighting whatever she has. So, they sent us home after giving her an IV antibiotic that lasts 24 hours. We came home at 1 am. Her fever broke overnight and she is actually feeling good this morning. I, on the other hand, finally caught whatever she and Jake have and feel yucky! Sigh.

But, we are thrilled to have been able to come home and hopeful that the antibiotic and her crazy neutraphil count mean we will be able to continue with our holiday plans to go to Grandmom and Grandad’s house.

Love,
Beth

In the ER

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December 19, 2009

It’s 11:49 pm and I’m writing from the Vandy ER. Tanner has a fever and we are waiting for counts to decide whether we have to stay or not. If her counts are above 500, they will let us go. They have already given her an IV antibiotic that will cover her for 24 hours. If her counts are below 500, we will have to stay. I’m not even going to talk about how I feel about this development – it’s too exhausting and I don’t feel like I have any energy to spare.

Obviously, we will not be lighting the candles at church tomorrow and, of course, we can no longer count on being able to go to my parents’ for Christmas. We really can’t even count out being in the hospital for Christmas at this point.

That’s all I’ll write. The rest would be blasphemous, I’m afraid. I’ll update in the morning.

Love,
Beth

The Breaking Point

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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.

Love,
Beth

House Calls

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December 15, 2009

Well, Jake’s school stint lasted two days. He has a cold and I had to keep him home today. He missed his Christmas party, bless his heart. And, I was supposed to take Tanner to see Princess and the Frog while he was at school, so that was also a no go. We’re hoping Tanner doesn’t catch the cold and end up spending Christmas at the hospital.

BUT, the day was saved by a special visitor… Tanner’s favorite ER nurse, Blaire, came to play. Seriously, how amazing is that? Blaire was Tanner’s nurse back in March when Tanner was lifeflighted to Vanderbilt for a Bactrim reaction. All that long night, while John and I sat in chairs and hung on to hope that Tanner would make it through the night, and that someone would figure out what was wrong with her and be able to fix it, Blair was there. She was quiet and competent and sweet to my child and to John and I.

The next time we were in the Vanderbilt ER was on May 30; the pediatrician had sent us in after having spent most of the night at Williamson Medical Center’s ER with excruciating back pain. We were sent home having been told that Tanner was constipated. The next morning, after not sleeping for most of the night due to the pain, Tanner developed a fever and we went to the pediatrician’s office. They sent us to Vanderbilt where she had numerous tests and were told that she most likely had leukemia. Again, Blaire was there, this time with Megan (who Tanner also loves). I think going through that kind of trauma bonds you in a strange, but powerful, way. Blaire and Megan came to visit Tanner while she was in the hospital that first week, even bringing gifts for her. They said they rarely get to see what happens to their patients after they leave the ER. We thought they were amazing.

A month ago, Tanner needed a blood transfusion and John took her to the ER. Guess who was there?!!! Blaire! I think it’s unusual to keep getting the same nurse like that when there are so many shifts and the Vanderbilt Children’s ER is so big.

Blaire contacted me through the blog the other day. She said she had the week off and would love to come play with Tanner. Of course, we said yes. Today, she and Tanner danced, dressed up Build-a-Bears, played restaurant and doctor, and even played wii. Tanner loved it. She needed it. I don’t have the stamina to play with that kind of intensity anymore… I’m burnt out on pretending.

I think it is amazing for a nurse that sees sick kids all day at work to choose to spend her time off with a sick kid. But, honestly, that’s been our experience at Vanderbilt. John and I say constantly how awesome it is that the people that work there are unfailingly compassionate. For example, when Tanner has a CT scan, you can only imagine that she is the 20th kid the tech has scanned that day, but you would never know it. They are kind to her, and kind to us. They genuinely care.

We are so fortunate to have a hospital like Vanderbilt so close by. I keep up with the CaringBridge site of a little girl named Kinsee that has T-cell ALL and just had a bone marrow transplant. She lives in a small town in West Tennessee and travels to St. Jude for treatment. When she is in intensive phases of treatment or her counts are low, she and her mom have to live at the Ronald McDonald House or the Target House. I can’t imagine how disruptive this is during what is already an unbelievably stressful ordeal.

Today, Blair reminded us of just how lucky we are. Not only do we live 20 minutes from Vanderbilt, they make house calls! I meant to take a picture of Tanner and Blaire for the post, but forgot. Tanner says Blaire took some with her phone. Maybe she’ll send them to me (hint, hint) and I’ll post them if she doesn’t mind.

Love,
Beth