Category Archives: difficult things

A Relaxing Day

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July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.

We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?

I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.

Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.

She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.

Just a typical day at the Page house…

Love,
Beth

Sleep… Blessed Sleep

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I find that the less I sleep, the more I realize how underrated it is. By yesterday afternoon, it had become my number one priority. Ironically, Tanner, who was awake with me until 1 am the night before, and had a virus to boot, didn’t seem tired at all. But, last night, for the first time in nearly a month, the whole family slept, peacefully and relatively uninterrupted for a good 10 hours or more. Tanner woke up to go to the bathroom twice, but didn’t eat at all or ask for any painkiller… both miracles and evidence that the steroids are leaving for real.

We see lots of evidence of the steroids’ retreat: a return of our happy, laughing little girl; less stomach aches, more sleeping and less eating. All wonderful things. We are so thankful. It is one thing to have someone tell you you’re little girl will come back to you after the steroids wear off, it is another thing to believe it. I’m glad it turned out to be true.

She laughed hysterically most of yesterday afternoon (maybe she was delirious), which was really good to hear. She made “driver’s licenses” for she and Jake out of business cards this morning and kept asking us to check them. Gladly. Can’t remember the last time she pretended anything.

Even the swelling seems to be going down in her face and stomach, which makes her a little more recognizable as Tanner.

Sadly, she realized last night that she will not be able to go to the Franklin 4th parade today. It’s been a tradition for us to decorate bikes with our neighbors and ride in the parade. She was crushed. We talked for a while about how long it would be until she could be among people again and she figured out that she wouldn’t be going to school in the fall. Again… crushed. She doesn’t want to go in halfway as the “new kid” and is afraid kids will make fun of her and call her names. We talked about it and decided that she would know many of the kids in her class from last year and that we would do all we could to be involved throughout the year so she wouldn’t feel like a “new kid.” She felt a little better and then had the idea that our friends could take pictures of the parade and she could look at them tonight. We saw our friends this morning and Tanner happily yelled to them to take pictures. Amazing. We are going to their house for a cookout tonight and fireworks, if we can take an afternoon nap so we can stay awake.

Special thanks to our friends the Whitlers who created and host this blog for me, and who brought us the most delicious dinner last night. Celia has written a song for Tanner and they sat on the couch and made some changes to it yesterday. Tanner laughed a lot and seemed pleased to have a song written about her. Celia is going to put a melody to the song and come sing it for Tanner. Truly priceless.

Speaking of singing, Tanner’s favorite kid’s singer, Roger Day, is going to do a private concert at our house soon. So excited. We have every CD he ever made and it is so kind of him to do this for her.

So, for all the things we can’t do, there are other really special things to take their place. And, as my Aunt Debbie once told me about something totally different, “It is a season of your life.” It applies here as well. In 6-9 months, we’ll be in maintenance, and although it will be no picnic, we should be able to have a more normal life. And, by then, my almost 6 year old will have taught me how to accept the things that life hands you with grace and a smile.

In the Hospital… again

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Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.

I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.

The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.

Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.

Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.

Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.

Will update in the morning.

Beth

One more day

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The last day of steroids tomorrow!!! I know we’re making a huge deal of this, but you just can’t imagine how horrible the side effects are getting. She is so exhausted from not sleeping and if her face and stomach swell any more, she will pop. Not to mention the constant stomach pain. At first, the mood swings seemed like a real pain, but now they just seem like a minor annoyance compared with the rest. I’m not sure how long the steroids will take to get out of her system, but we are all looking forward to a good night’s sleep, I can tell you that. Hopefully, by the end of the week.

I keep meaning to point out that Ron added a new link to this page. It’s to a book called Chemo to the Rescue. If you are the parent of a friend of Tanner’s, I would encourage you to read this book to them so they can better understand what is happening to Tanner and what to expect when they see her again. You can read the book online for free. It is Tanner’s favorite book now. It was written by an 8 year old girl and her mom after she finished treatment for ALL. They wanted kids to know that chemo is really a good thing and to understand what was happening to them. It is very positive, but honest. I think Tanner likes it because she knows it doesn’t sugarcoat leukemia with any pretty analogies and it is written to empower kids. We read it all the time and today, Tanner, John, Jake and I all chanted and drummed to the “rap” that is written in it about chemo. It was hilarious. She made up hand motions to certain parts of the book and had Jake doing it with her. They were pretending to put magic EMLA (numbing) cream on their ports and then stick themselves with an IV line. Bizarre fun.

I’m going right now to put together Tanner’s nighttime “snackpack.” It’s a big tupperware tub that we fill with snacks so she can nosh all night at will. She has requested Cheese Nips, Sunchips and Pretzel sticks.

Here’s hoping you sleep because I know I won’t 🙂

Love,
Beth

My superhero

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Today, a little boy from Tanner’s kindergarten class came by to give Tanner an adorable card he made her. On the front, it said “Super Tanner” and had a picture of Tanner flying in a cape. Inside was a sweet note, dictated to his Mom, about how Tanner was a superhero who was going to win the battle against the evil leukemia monster… adorable and so true.

Today, my needle-phobic child who has to take anti-anxiety medicine just to go to the dentist, showed the child life lady a hilarious video of Jake in one of Lily’s pink wigs while the nurse put the IV line into her port. No holding her arms down, no screaming, no crying. A little wimpering after it was all over and a little visible anxiety beforehand, but wow, what a difference. Then, when it was time to take it out, again, no big deal. Last week we had to lay on her legs and hold her arms. Amazing. Tanner Page, my superhero.

It is humbling to discover what a five-year-old can learn to accept. She has accepted that she has cancer, that no matter how repulsive a medicine may taste, the pain relief is worth it, and that she will lose her precious hair. She will accept so many other things that a five-year-old shouldn’t have to accept, but she will be so strong when she finally beats this.

The other day, she asked the question we had been dreading most: “Mom, do people die from leukemia?” I knew this question would eventually come, but didn’t expect it so soon and wasn’t really prepared the way I wanted to be. John and I paused and then I explained that grown ups and little tiny babies get leukemia, too, and that they sometimes die because they can’t fight infection as well, but that kids like her do super with leukemia. This seemed to satisfy her for the moment, but I know the question will come up again, and, eventually, she’ll figure out that some kids do die from leukemia. Then, she will have to accept that, too.

But, I’ll do everything I can to assure she never accepts that SHE might die. No way. I’ve never even considered it ,and I don’t want her too, either. That is not her fate. She is a superhero and superheroes never give up and always beat the bad guy.

Love,
Beth

Being Different

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I felt like I was talking to an adult. To a friend or colleague who was telling it to me straight. Only I was talking to a five-year-old who has had to handle some pretty adult issues over the past few weeks.

Tanner had woken up from her nap in a great mood after having had a pretty good morning, overall. She was perched on the kid-sized table in our playroom. I was amazed. It was the first time I had seen her sit up without leaning against something in weeks. She was laughing at Jake and encouraging his wacky antics as he searched for the “monsters” she kept pointing out to him and telling him to run from. Then, the phone rang. It was my neighbor, Ashley, whose daughter, Corinne, is Tanner’s best friend. They wanted to come over for a few minutes and I thought it would be a great time since Tanner seemed to feel so good, so told them to come right away lest we lose the moment. That was where the fun stopped.

I told Tanner they were coming and she slid off the table and asked for a pillow so she could lie down leaning up against the table she was just perched on. She visibly slumped… face, body, legs. She looked miserable and terrified. I leaned down and said, “Don’t you want her to come?” She told me she didn’t feel good anymore. I asked her if she was scared and she nodded. I asked her why and she said, “Because we are not the same anymore. We’re different. I have leukemia.”

And therein lies the crux of the problem.

I would love to tell her they aren’t’ different, but I know exactly what she means. Corinne and her sister ran around the room, playing with our train table and a talking doll of Tanner’s, chasing Jake and generally, being kids. Tanner lay on the floor, being sick. She did liven up a little several times and talk animatedly about several topics, including, of course, food. But, right now, she sees huge differences between herself and her friends. They haven’t had to walk the road she’s had to walk over the past few weeks, they haven’t had to accept that they have a disease that will be with them for years to come, they don’t worry every day that their hair will fall out. She’s right… they are different… they are the kind of carefree kid mine was up until May 30.

Truth is, I don’t know what to tell her to make it better. I’ve never been through anything remotely like what she is facing. At five years old, she’s already topped my 40-plus years of living in the “difficult road to walk” category. I birthed her big self naturally, without any drugs, but that pain only lasted 22 hours and 17 minutes, not 3 years. I just don’t have any idea what she is really going through. For once, I am speechless.

In the end, our friends’ visit was exactly the kind of medicine we need more of. The more that Tanner sees that other kids still love her, still treat her basically the same, the more she may feel just like all the other kids. But, I still can’t tell her she’s not different… she just is. And, we’ll have to find a way to prove to her that different is okay.

Love,
Beth

waylaid

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So, today started out okay.  We had our second clinic visit, which went pretty well.  Tanner had blood drawn our of her port and chemo put into it, and we got a prescription for some extra stomach medicine that, hopefully, might help with the abdominal cramps caused by the steroids and exacerbated by the crazy cocktail of drugs she is taking.

On the way home in the car, her stomach is killing her.  We stop at CVS to see if they will rush the prescription for prevacid (she also takes prilosec and zofran) so maybe it will help her.  They are kind and take mercy on a sick little girl and we give her the prevacid, along with oxycontin (painkiller) and neurontin (to help with nerve pain) as soon as we get home.  She feels better within 15 minutes and is laughing and talking while laying on the sofa. 

Her blood counts were down this week, which they expected, but it makes her so weak and tired.  By noon, she is almost asleep on the couch after gorging herself on a buffet of food items.  I carry her upstairs where she naps for 3 hours and I have to wake her up so she won’t be awake all night.

I shouldn’t have worried…  the chemo has gotten her.  She is, effectively, waylaid.

I take Jake out for a scooter ride around the neighborhood and when we return, she is as sick as I have seen her.  Limp… lying on her back with her arms over her head in surrender, her beautiful face swollen from the steroids, the palms of her hands covered in a rash that will eventually cause her hands to peel the way her feet did last week, face pale, lips cracked… waylaid.  The only sign of life is a frantic pulse point at the base of her throat that looks as if it’s trying to say, “I’m still here… working hard, but still here.”

My eyes well up and I have to turn to gather myself in case she wakes up and sees me standing over her crying at the horror of this.  I want to hate this chemo… I want to curse it and beat it with my fists, but I can’t.  The irony is that these drugs that look like they’re killing my child are actually saving her.

While I take Jake up to bed, John scoops Tanner up and puts her in her bed.  I leave Jake’s room and stop to check on Tanner.  She is awake.  I creep in and feel her head.  She seems warm and I check her temperature to be sure (a temperature over 100.4 sends us back to the hospital).  It is normal.  I put chapstick on her cracked lips and ask if there is anything I can do for her.  She asks me to pat her and I do.  Then, I temporarily lose my composure and say, “I hate leukemia… I really, really hate it.”  She nods slightly.  Remembering to try to be positive, I add, “But we’re gonna get it, you can do this.”  Unbelievably, she nods again.  Humbled, I kiss her on the forehead.

She’s still under there.

Beth

Now I’m just mad

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So, last night John mentioned to me that only 3,000 kids are diagnosed with leukemia each year in the U.S. I don’t know why I’ve not seen this number yet with the plethora of information I have pored through to learn everything I can about the disease that is trying to kill my daughter. But, somehow I haven’t.

3,000. How can this be? Do you know there are more than 75 million kids in the U.S.? I looked it up on the Internet. My child is one of 3,000 out of more than 75 million kids to get this disease. That’s a .004% chance that my child could be diagnosed with leukemia.

That makes me so outrageously mad. I really can’t explain why exactly, but maybe it just seems like a cruel joke to get something this rare. To have it rip everything apart this way.

Don’t get me wrong. I’m more thankful than you can imagine that more kids don’t get leukemia. I wouldn’t wish on anyone. But, as John and I both said in the surreal two days between the time a doctor first uttered the word “leukemia” and the time we knew it to be fact, leukemia is something you give money towards when you see the little bald kids on a telethon on TV or on a poster in the grocery store. It’s not something that happens to your kid.

Or, is it?

Beth

One little moment

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My post for today was going to say, “Steroids.  Mood Swings.  Enough said.”  That was it. 

But, after running away for a walk and trip to the grocery with my friend Kim while John handled dinner and bed for the kids, I returned home to find a picture that Tanner had drawn for Jake to try to explain leukemia to him.  John said she told Jake, “Tata has cancer, it’s called Leukemia and it makes me lose my hair.  Daddy, get me a piece of paper so I can draw it.”  She then wrote the word “loocemea” (I might spell it that way from now on!) and drew two pictures of herself.  She said, “This is Tata with no hair and frowning.”  Then she pointed to the other picture.  “This is Tata with hair.  See, I’m smiling.”  John said she was animated and happy telling him about it, and that then they talked about how the leukemia would go away and her hair would grow back, and she said, “Oh yeah, Jake, I forgot about that part!”

Of course, I bawled.  It would be the second time today.  The first time was out of frustration and anger at what these drugs and this evil disease is doing to my kid.  The second time was because I realized that she is actually processing what is happening to her and that she understands it and is able to articulate it.  That means she could be just steps away from wanting to kick it’s ass.

She and I read this awesome book today called “Chemo to the Rescue” (thanks, Ashley).  It was written by a mom and her 8-year-old daughter who has been diagnosed with leukemia when she was 5 and wanted kids to know that chemo helps them.  It was a great explanation of the disease done in a way kids could understand, without glossing over it with analogies.  It actually explained what is happening inside her body.  She was fascinated, and it allowed us to talk about some things we haven’t talked about.  It was a good moment in an otherwise trying day.

So, look out loocemea… Tanner Page is armed with knowledge and on the loose.

Love,
Beth

starting to feel better

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We finally got Tanner to leave the couch! I put her in her room today after lunch for a nap (she slept 3 hours) and then had a pretty uneventful afternoon. Then, Tanner, whose entire life right now seems to revolve around what food she is going to eat next, remembered that Dad said he might bring her home McDonalds. I told her maybe we could spread a blanket upstairs in the play room and have a picnic. So, she calls Dad and puts in an order for she and Jake and we had a picnic upstairs. She was propped up on pillows the whole time, but was very alert and laughed a lot watching Jake and Daddy play like wild men. It seemed very normal, which is rare. So, I’m hoping today she might have a little more energy. I think the chemo is going to put her down for two good days every time and then, slowly, she will feel a little better each day until it is time to get whammied again. She told me today she was afraid to see her friends because she was scared she might give them leukemia. It took me a while to convince her that can’t happen and I’m still not sure she believes me. She also said she was afraid kids would make fun of her because she has leukemia. In what universe is it okay for a five-year-old to have to think about these things? Here’s hoping to see a little more of my girl back tomorrow. Beth