Category Archives: counts

Clinic Day #28

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Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth

We Need a Break

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February 24, 2010

Tomorrow is Tanner’s clinic visit. She will get an IV dose of Vincristine, have a spinal tap with methotrexate and, of course, get counts. I had this hope that she would be high enough that she could at least go into school tomorrow for her class photo. I don’t want her to look at her yearbook and see her whole class there without her. I’m not saying I thought it would really happen, but I hoped it might.

This morning, Tanner has come down with the cough that Jake showed up with yesterday. Of course. It might be fine. Her counts might be high enough for her to fight it off; she’s done it before. Or, it might not be fine. Her counts might take a nose dive again, she might get a fever and have to go to the hospital for antibiotics, she might get pneumonia and become an inpatient. Count on nothing when leukemia is involved.

And, that’s just it. Count on nothing. Hope for nothing. Only I can’t help it. I hope. I just do. I try not to. I tell myself it will end in disappointment. I have learned not to share my hope with Tanner so she is not disappointed too. But, I can’t seem to live expecting the worst. It’s too bleak.

So, I think I’ll be disappointed again tomorrow. I think I will probably not hear that she can go have her picture made with her class. She will not know to be disappointed now, but she will be later when she sees the class photo she is not in.

As one of my cancer mom friends said recently, long-term maintenance is better, but it still stinks. Amen.

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

Hoping for Good Counts

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I did try to crop out the toilet in the background, but couldn't do it!

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.

Love,
Beth

Counts Update

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February 7, 2010

Just a quick update on our counts check today… Tanner’s neutraphils had climbed to 230, up 100 from Monday. Not as much of a jump as we had hoped, but at least headed in the right direction. The doctor wants us back next Thursday and told us to keep her off of her oral chemo until then. Tanner should definitely feel good with this break from chemo even if her immune system sucks. So, more isolation, which stinks.

Thanks for all the prayers… they worked. Now, is it greedy to ask for her counts to go up more quickly?

Love,
Beth

Her Beautiful Face

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February 10, 2010

We’re cooped up and feeling it. That’s all I can say about it without whining and I think I’ve had enough whining in the last few days to last me a lifetime! Tanner feels good and we’re going in for counts tomorrow to see if they are at least on their way up. Her oncologist called yesterday to tell us to stop her oral chemo until her counts come up. He felt they might not rise quickly while she was taking the 6-MP so she’s off of it until at least tomorrow.

Those of you who keep up with us on facebook will have likely seen this picture. I posted it the other day. I can’t stop looking at it. There’s something about it that is so powerful for me. I didn’t ask Tanner to pose for this picture. If you know her, it will not surprise you to hear that she inserted herself into a picture I was taking of the floors in our new house. She ran into the room, saw me taking the picture, threw off her coat and jumped right into the center of the picture. Nothing unusual. She’s a ham, alright. But, I was surprised when I got home and loaded the photo onto the computer.

It’s not her pose… that comes straight out of my People magazines that she sees lying around the house. It’s her face. I expected her to be a little silly, a little put on, with a cheesy grin or a comical pout. But, her face is open and honest. She’s staring at the camera with a confidence and an integrity that takes my breath away. Leukemia has stolen many things from my child, but it will not steal this. It will not steal the strength and courage that I see in that straightforward look… in that beautiful face. No hair to hide behind, but she doesn’t need it. She is a force to be reckoned with.

This is not a child who is afraid. She may have fears, but she is not afraid. She expects the best for herself – you can see it in that look. The way she is looking so calmly at the camera. She’s a superhero. She’s a rock star. She’s GI Jane.

I take comfort in this. I look at her in this picture and know that she will be able to handle whatever comes her way. That she will be an extraordinary woman someday when all of this is just a memory. That the same tenacity and persistence that drives me batty as a parent will be the same determination that allows her to succeed against all odds as an adult. She will have learned it the hard way.

Say a prayer for us tomorrow if you think about it. We’re hoping to hear her counts are on the upswing.

Love,
Beth

Not this Week

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February 8, 2010

We’ve been waiting for so many good things to happen. Living right on the edge of happiness. Today, we went to clinic for counts, hoping to hear they were high enough for Tanner to return to school this week. We were flabbergasted to find that her neutraphils were only 130 – the lowest they have ever been since diagnosis. Nurse Carie was so surprised, she ran Tanner’s counts twice to be sure.

Apparently, the doctor said that maybe the virus that caused Tanner’s ear infection caused the low counts and that now they should be able to recover. In the meantime, we were handed a mask along with Tanner’s count sheet and are in seclusion. Jake will again not be able to go to school and we will postpone his birthday party this weekend until next weekend.

Last week, Tanner made a valentine box. A cardboard shoebox wrapped in red paper and decorated with glittery stickers and magic marker hearts. She worked hard on it and, without my even knowing, pulled out a class list and wrote a valentine for each child. Littlest Pet Shop for the girls and Transformers for the boys. She was so excited. This weekend, I bought candy so she could tape it to the cards. She talked about putting all the cards in the boxes for each child and being able to go to the party.

I’ll bring the box with me to a meeting at the school tomorrow and give it to her teacher so she can pass out the valentines for Tanner. Jake will miss his Valentine’s party, too. Just like he missed his Thanksgiving party and his Christmas party. We just can’t afford to have him bring germs home to her when she, essentially, has no immune system.

Needless to say, we are extremely disappointed. Still waiting.

Love,
Beth

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

Clinic Day #27

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January 28, 2010

Apparently Tanner will be going back to school!!!!!! Hoooooooooorayyyyyyyyy!!!!! We’ll meet with the school next week to iron out any special considerations she will need, let her get over the steroids she started taking today, and start her out on Monday, February 8th. Unbelievable. Really unbelievable.

Clinic obviously went well today, although very long. Her counts were actually quite high… too high. They were 3,300. They should be between 1,000 and 2,000, but the doctor said he wanted to see how she did this next month before he would raise it. Whew! Weird to be hoping for lower counts, but we are. I’ll take the high counts for now, though. It means her immune system will be that much stronger to fight off the school germs.

They also removed all of her eating restrictions. Tanner was almost as excited about that as she was about school. She started yelling out all the things she wanted to eat, “Salad? Grapes? Strawberries! I want strawberries!!!” It was so cute.

After all that excitement, we sat… and sat… and sat… in a very full infusion room waiting for chemo. After an hour or more, the nurse came out to tell us they had misplaced Tanner’s chemo roadmap and they couldn’t order her chemo without it. “An actual physical piece of paper? There’s no electronic file with her two-and-a-half year roadmap in it?” Apparently not. They finally found it behind the filing cabinet and ordered her chemo. More waiting… and waiting. We finally left four hours after we got there; two-and-a-half hours of which was spent waiting for a chemo push that took all of 3 minutes once it got there. You never know with clinic.

Tanner left clinic with her grandmother and they went to see Alvin and the Chipmunks. Then, home for some wii with Jake, dinner and the Make A Wish Interview.

She decided she wanted her wish to be Disney World (secret applause). We looked at Disney World and Disney Land yesterday on the Internet and she saw how much better Disney World was and decided to head to Florida instead of California. I swear I didn’t sway her (well, maybe just a little); I just pointed out that if she wanted to meet the stars of a Disney show, we could probably go to Disneyland as well. She wanted to see it online, then we clicked over to Disney World (that might be the part where I swayed her) and saw some awesome videos of the different parks. iCarly apparently cannot compete with the Magic Kingdom, Typhoon Lagoon and Animal Kingdom. Not to mention that you get to stay in the Give Kids the World village, which is just for wish kids. It has ice cream all day, Christmas every week, present fairies that leave presents under your pillow every night, and a Mayor that’s a rabbit. Seriously. I’m so excited because this is something for Jake, too. Although no one has gone through what Tanner has, Jake is affected by all this and deserves something special.

So, it was a long, but very special, day. I’m going to bed to dream about sending my daughter off to her first day back to school.

Love,
Beth

Big Things

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January 26, 2010

We spent Saturday night at one of our favorite places with some of our favorite people. We went to the circus!!! I LOVE the circus. I would go if I didn’t have kids and so would John. I had put it on our calendar a month or more before, but was struggling with whether it was safe to take Tanner into that crowd of people. It’s one thing to be at a restaurant with other people in the next booth, it’s another to sit with people who may or may not be healthy on all sides of you.

John’s company, Franklin American Mortgage Company, made the decision easy. They gave us their suite so we could go without worry and invite friends, too. We had an awesome time with two other families. It’s a big thing for Tanner to be able to do something like this… and Jake, too. We realized at the Circus that Jake has experienced a lot less than Tanner at the same age because he’s been sheltered due to our situation. He was super excited!!! We all laughed at him because he just kept jumping up and down and screaming at random moments because he was so happy.

Thursday night will be another big night. Two representatives from Make a Wish are coming to interview Tanner about her wish. She is so excited, but very conflicted. She really thought she wanted to go to Disney World, but now wants to maybe meet the cast of one of her favorite TV shows and ask to be in an episode. Decisions, decisions. I was hoping for Disney, but whatever she wants will be fine. I just want it to be special for her. It will be interesting to see what she comes up with.

And, Thursday morning is clinic day. It has, unbelievably, been a month since we have been to the hospital. Surreal. She will get a dose of Vincristine in her port and see the doctor. She also starts her monthly five-day steroid pulse.

We are hoping her counts have remained between 1,000 and 2,000 so that they don’t raise her chemo levels. No more chemo, please. Also, if her counts have remained steady, maybe they will clear her to go back to school.

John’s Mom, Ann, is coming with us to clinic on Thursday and then taking Tanner to the movies afterwards. They are going to spend the day together. Tanner is super excited.

Tanner continues to feel really good most of the time. She has periodic nausea and body pains and fatigues more easily than normal, but mostly seems like any six-year-old. Still, the chemo is there. She got sick yesterday morning for no apparent reason that I could figure except the chemo. Weird since Tanner only got sick twice during all the chemo she has received. But, a reminder that even in maintenance, the chemo is still there, still poisonous, still eating at her.

Still, I’ll take maintenance over the past six months any day. The freedom that it brings, the ability for Tanner to regain strength and stamina. The possibility of school and friends.

Big Things… Good Things… Hopeful Things.

Love,
Beth