Category Archives: cancer

Great Day

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Well, we finally had a great day! I got to talk to my daughter today for hours. She was super for most of the day. For the first time since we have been home, she actually walked around the house without holding anyone’s hand or using her cane.

For hours, we each lay on a twin bed in her room giggling, talking, reading, crafting, making a Father’s Day card for John, and, of course, eating. It was like a slumber party during the day. She actually asked me to read to her several different times and declared “Chemo to the Rescue” her favorite book. She and I were up most of the night before with stomach problems and just general steroid-induced sleeplessness. I’ve missed her so much, I didn’t want the day to end. We’re hoping for another good day tomorrow before chemo on Tuesday.

We have 8 days left of this first stage of treatment. It probably would be daunting for Tanner to understand how much is left, but I’m going to privately celebrate any milestone I can. Not this Tuesday, but next, is our last day of “Induction.” Tanner’s chemo treatment will have four phases: Induction, Consolidation, Delayed Intensification and Maintenance. The first three phases are varying degrees of intense therapy and will last 6-9 months, depending upon how Tanner responds and what, if any, delays we experience due to infections, low blood counts, etc. The last phase, maintenance, lasts years and is much less intense. It will be just monthly chemo treatments and is when most kids’ hair begins to grow back and they can resume normal activities like school.

The end of this induction phase also marks our last day of this intense steroid treatment. The steroids return later, but never for 28 straight days. So many of her most annoying side effects are, I believe, due to the steroids right now. Abdominal cramps, her bloated face and stomach, her mood swings and crazy appetitie, sleeplessness. Even Tanner knows how many days of steroids are left and we are counting the days on the calendar.

Here’s to another good day tomorrow.

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

Tanner has cancer

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Today, for the first time, Tanner looks like a cancer patient. She is pale with dark shadows under her eyes and can’t wake up this morning, even though it is 8:45 am (for those of you who know what early birds my kids are, this will mean something). I know in my brain that means the chemo is working, killing all those abnormal cells along with what few good ones she had left, but in my heart it is killing me. I just want to fix it for her. Today is the day she gets the two horrible shots in her legs and I hope that she and I are strong. Tanner is terrified of shots and if there is any part of this that I could take from her, this would be it. Please pray for us today.

Beth

Reason to hope — Tanner!

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Okay, we have a little hope that it is not Leukemia… Doctors came in today to say the more tests they run and the more Tanner’s symptoms progress, there are some things going on that are not typical of Leukemia. She still has abnormal white blood cells — a strong indication of leukemia — but her elevated enzyme levels and and an enlarged bile duct are not usually associated with Leukemia. They are currently doing a battery of blood tests to rule out some kind of viral or bacterial infection as well as having a liver specialist chase down her bile and enzyme situation before proceeding with the bone marrow biopsy. This by no means rules out leukemia, but is the only hope we have that it could be something else. How typical of Tanner to be atypical.