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

Good Riddance 2009

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December 3, 2009

I was so happy to write “2010” on a check I wrote yesterday. 2009, for lack of a more literate description, sucked. I don’t want to say this year couldn’t be any worse than last (my realm of possibility has seriously changed), because it, of course, could be. But, I’m hoping things are on the upswing as they seem to be.

Tanner is doing a little better this month on the steroids. We’ve seen some emotional behavior, but they haven’t wiped her out completely like they sometimes do… yet. She’s still taking them through Wednesday morning, so we’ll see. Overall, she is feeling good and we are much encouraged that the doctors felt comfortable with her not returning to clinic for a whole month. That indicates they believe her counts to be pretty stable, something that can usually take many months to achieve. We’ve taken that as a sign that we can comfortably have a little more freedom, which is nice.

We had a very busy weekend focusing on trying to get all the decisions made for the renovations on the new house. It’s fun to have something else to think about, but still, in the back of my mind, I feel like I have to rush, rush, rush because you never know when a hospital trip might pop up. It’s an awful thing to have in the back of your mind, but it’s just the way it is.

Still, it feels for the first time in a long time like our lives are not being held completely hostage by cancer. We’re moving forward, which is the way it should be.

Jake moved forward tonight. He slept in a bed for the first time instead of his crib. We bought him a racecar bed (he LOVES racecars) and he was so excited. It’s easy to forget about the “other child” in this situation. In fact, I forgot to take him to a birthday party on Saturday. I feel terrible. But tonight… he had his moment and he did great.

Have I mentioned that Tanner’s hair is growing back? It started out as this little white peach fuzz, but has since darkened and grown to where she has a soft down covering her entire head. It’s amazing how fast it is coming in. I can’t keep my hands off of her head – she feels like a little downy duckling. She is really hoping it will be brown and curly! It does actually look darker, but there’s no word yet on the curls. See, even her hair is moving forward.

So far, 2010 feels different. It’s not that the dance with cancer is over by any means; I know it will go on for another year and a half and it will be very difficult, but I feel a little lighter on my feet now. I used to wake every morning and my first thought would be, my daughter has leukemia. Now, I sometimes wake up thinking something else – the new house, renovations, getting a new dog – good things.

Here’s to more good things for all of us this year.

Love,
Beth

Clinic Day # 26

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December 31, 2009

Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.

Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.

Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.

While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.

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 from the ER

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December 29, 2009

Tanner and John stumbled in from the ER at 12:30 last night. Tanner’s chest x-ray’s were clear, so no pneumonia, thank God. Her counts were once again very elevated, indicating that she is fighting an infection. They gave her a broad spectrum antibiotic and sent them home.

This morning, she is fever free, but seems pretty tired. We’ll just take it easy today and hope all of us continue to recover. Boy, talk about one step forward, two steps back. It’s frustrating, to say the least.

Back to clinic on Thursday for her monthly dose of Vincristine and the start of a five-day steroid pulse. Joy.

Love,
Beth

A Very Merry Christmas

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December 28, 2009

Thank you for all the prayers and good wishes for our Christmas travel. We did make it to my parents’ house in Atlanta on Christmas Eve and had a great time. My brother’s girls are 9 and 5, so Tanner was in heaven – two playmates for three straight days. Jake developed quite an attachment to my neice, Mary Mike, the 9-year-old… he was constantly asking, “Where’s that girl?”

Tanner finds a willing shoulder in her cousin, Erin, after a fun, but tiring day.

The best part of the whole weekend was that, for Tanner, I think it seemed as normal as possible. There really wasn’t anything that her cousins could do that she couldn’t. They played hard… really hard. At the end of every day, Tanner was exhausted and would come to me and ask to go to bed by 6 pm. But, she was having fun and it was a little “vacation” from the limitations of cancer. Thank you Mary Mike and Erin for giving Jake and Tanner so much love and attention!

Tanner and her new doll beds

Santa was good to the kids. In addition to an American Girl doll for Tanner and a Shake and Go Racetrack for Jake, he surprised them with a big bouncy house that Santa put up in the basement of my parents’ house. I think Mary Mike summed up their reaction best when they rounded the basement stairs and saw the 9 x 9 inflated castle… “Holy Cow!” she said!!! Needless to say, they jumped all weekend long. Great exercise for Tanner’s legs. The bouncy castle came home with us and is in the basement of our new house waiting for us to move in.

We even got to experience a little church on Christmas Eve. We found a little glass prayer chapel at the back of the church that overlooked the sanctuary and watched some of the service from there. Tanner got to wear her pretty Christmas dress and get dressed up, just like her cousins.

On our way to church

We were still all somewhat sick for the week. We were coughing and sniffing and, ironically, probably gave something to my family members who had worked so valiantly to stay healthy so we could come. My Mom is sick already.

I thought Tanner was getting better today, but this afternoon started feeling bad and we found she had a fever by bedtime. She and John are at the ER as I write this, waiting for counts to determine whether they are high enough for her to be able to get IV antibiotics and come home or whether she will have to stay. We are all unbelievably weary of this routine and, although I am trying to be grateful for the break in illness that allowed us to travel for Christmas, I just really wish we could catch a break for a while.

So, pray for her that her immune system isn’t shot from being so tired over the holidays and that she fights off whatever this is. Pray that we will have the stamina to endure more of the stress of this disease. Pray that Tanner will continue to have the will to fight.

Today, Tanner said to me, “Mom, I have a job.”

“Really?” I replied. “What is your job?” expecting to hear that she was a hairdresser or a nurse.

“I’m fighting leukemia,” she said.

Keep it up big girl… keep it up.

Love,
Beth

Ahhhh… clear x-rays!

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December 22, 2009

John took Tanner in for chest x-rays today and they were clean!!! Her neutraphils had dropped from the crazy 19,000 to a more healthy, but robust, 3,100. So, doc says we’re in good shape to travel. They gave us a contact at a hospital near my parents’ house that is capable of handling a kid with leukemia and told us to give her Claritin to clear up her one ear that is threatening infection.

So, if my eyes will just clear up and Jake’s nose, we are good to go! We’ll get there a day later than planned, but there nonetheless. Hopefully, no other crazy things will happen to keep us from going.

I’m just starting to feel a little Christmas cheer. Just let the kids open some gifts from dear friends (a Phillies and an Eagles hat, oh my!), read some Christmas stories together and am going to get Tanner to help me wrap some presents while Jake finishes napping. It would be completely blissful if it wasn’t for the laundry!!!New hats!

My poor husband finally got to go back to work – he definitely bore the brunt of this health mishap. Trying to work from home while taking care of our two monsters is no picnic.

Hoping all of you are indulging in a little Christmas, Hannukah or Kawanza cheer.

Love,
Beth

A Big Bump in the Road

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December 21, 2009

Tanner’s ER visit seems to have been the beginning of a virus epidemic at the Page house. So far, John is the only one who has not gotten sick. Tanner’s oncologist thinks we all have adenovirus – sore throat, congestion, irritated eyes, and fever. Tanner actually is much better; she just has a cough at this point. I spent all yesterday in bed with a fever and body aches. Today, I am better, but not yet well. Jake continues to cough and just feel yucky. Everyone’s eyes have been bloodshot and irritated at some point.

We’re taking Tanner in for a chest x-ray tomorrow to be sure she’s not developing pneumonia again. If she’s okay and Jake and I feel better, we still may make it to Atlanta for Christmas Eve. I’m a little behind on my Santa duties, but I think we could do it.

Poor John is taking care of three sick people while trying to work from home as well. Once again, he is the lynchpin that holds us together.

So frustrating to have jumped through so many hoops to get to this point only to have a virus take us all down like this. We just can’t catch a break.

Keep us in your prayers. We’re hoping everyone is better tomorrow.

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