Category Archives: treatment

Clinic Day #20

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November 6, 2009 IMG_1255 As always, there is a good and a bad… the good is that Tanner really only felt bad for a portion of today and that was really due to the intense hydration process, combined with no food because of the surgery, which dropped her blood sugar for a while. The chemo didn’t really seem to bother her. Some chemos are that way – the effect is more cumulative or it is delayed – others are instant and she’s sick in the chair. So, that was a more than pleasant surprise.

The bad news (why is there always bad news, too?) is that the day was even longer than we anticipated. We had thought we would be home by about 4 pm, but due to some issues with surgery scheduling, we got off track and ended up staying until nearly 6 pm after having arrived at 8 am. We were the only people left in the clinic with one nurse.

But, overall, I’ll take the long day over Tanner feeling bad from the chemo any day. We watched several movies, played computer games, googled funny animal photos, watched Disney Channel and colored a little.

It’s over and I’m glad.

Love,
Beth9

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth

Tired

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November 3, 2009 Tanner doesn’t seem to be bouncing back from this recent bout of pneumonia the way she normally bounces back from things. Normally, she gets more and more energy every day until she seems back to normal – or leukemia normal, at least. But, this time, she just seems about the same every day. She’s still napping every day and still tired at bedtime and she doesn’t really play all that much; she mostly wants to stay on the couch. Now, it’s only been four days since she was in the hospital, so she may be just recovering slowly from a pretty big illness.

Or, it could be the fact that she is on three antibiotics and her body is just trying to deal with that. I suppose it could also just be the effects of the chemo still. Or, last but not least, she could be getting close to needing a transfusion.

Whatever the reason, she’s tired, which is kind of okay since I am, too. So, we dropped Jake off at school today and came home and lay on the couch and watched movies. It was lovely.

Her teacher was supposed to come this afternoon, but Tanner fell asleep in the car on the way home from picking up Jake from school and I didn’t have the heart to wake her. She wouldn’t have been much good to anyone if I had. She slept several hours and still went to bed on time, tired.

Jake had a great time at school today, but told his teacher several times throughout the day that mommy wasn’t coming back. He woke badly from his nap and was sobbing when I got there. Poor thing… he hasn’t known who was coming or going the last couple of weeks.

Friday is Tanner’s long chemo day. I honestly don’t know how they fit everything they are going to do to her into one day. If she needs a transfusion, I imagine it would mess up the whole shebang; a transfusion takes up to four hours. If she still seems super tired tomorrow, I may take her on Thursday to get her counts checked before Friday.

Tanner and I were in the bathroom at church today after dropping Jake off for school and she was wearing her little fanny pack with her antibiotic drip hooked up. She asked how many more days we had to do this and I told her just one more, but then starting Friday, we have to do five days of IV chemo at home. She said, “We have to take chemo every day?” I nodded and said, “I’m afraid so, sweetie.” She seemed to think about it and then replied in a very adult voice, “I’m gonna feel really crappy.” I told her she was welcome to use any word she wanted to describe it; she’d earned the right.

Tanner’s right… she’s going to feel really “crappy.” And, we’re going to feel crappy watching her suffer. And, Jake is going to feel sidelined and confused by everybody’s crappiness and Tanner’s irritability. Let’s face it, cancer sucks. But, it’s four more weeks of this particular brand of chemo hell, and we can make it. The Pages are strong like that.

Love,
Beth

Calling Nurse Page…

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November 2, 2009 When John and Tanner came home from the hospital Saturday, they had a lot of stuff with them. We had been in the hospital 9 days and had accumulated a lot of things that John kept unloading from the car and bringing into the house. After 3 or 4 trips, he brought in two big cardboard boxes and set them on the kitchen table.

“What the heck is that?” I said, expecting it to be a gift of some kind for Tanner. He opened them up to show me all medical supplies necessary to administer the IV antibiotics to Tanner for the next four days. Yikes! John laughed and said, “I say we just take her back to the hospital and say we made a mistake… we want to stay.”

Ironically, that was an option. We could either stay four more days or learn how to administer the antibiotics. Seemed like a no-brainer to me until I saw those boxes. Fortunately, John had taken a video of the pharmacists’ explanation of how to use the supplies and I had asked the nurse to show me how to flush her line while we were at the hospital. There were also written instructions. How hard could it be?

It isn’t actually all that hard, just kind of unnerving considering the reason she is getting the IV antibiotics in the first place is because she had some staph bacteria in her line. So, slightly nervous, John and I glove up, read the directions through several times and go at it. It went really well, I thought, until I came back ½ hour later and no antibiotic had drained from the ball. That’s when I realized I hadn’t unclamped the line to the antibiotic… oops!

Since then, I’ve become a pro, even by flashlight at 2 am. I’m pretty fast and quite confident now, which is good, because I have to do it four times a day. I’ll have flushed her line 32 times, hooked up the antibiotic and administered heparin 16 times by the end. I sterilize the cap on her line, flush with saline, bleed the air from the antibiotic line, hook them together and unclamp everything to begin the drip. Then, I reset my alarm for an hour later, wake up, unhook her, flush and administer heparin to keep her line from clotting.

It’s an amazing contraption that allows us to deliver IV antibiotics at home pretty simply. No pole, no infusion machine… just a little balloon filled with liquid antibiotic that, once screwed into her line and unclamped, drips out of the balloon and down the line into her port much like a water balloon would drip out if you put a pinhole in it. So clever. She even has a little fanny pack she can put it so she can carry it with her if she wants to get up and play.

So, it’s been going very smoothly… until this morning when the needle came half out of Tanner’s port. John woke me up and I could hear Tanner crying and yelling. Nothing to do but pull it out the rest of the way and go to the clinic to have it accessed again. Tanner and I took Jake, which was fun because she got to show him the ropes and he got to meet the ever-famous Nurse Cari.

One of the nice things about this whole thing is that I get to do something for John. The whole thing makes him a bit squeamish. It’s not just the fact that you have to draw back blood to make sure the port is working, I think it’s also the thought that he might hurt her if he makes a mistake. At any rate, it makes him uncomfortable and I just told him not to worry about it; I didn’t want him to have to do it. So the miracle is that he has let me do this for him; he doesn’t often stop helping me enough to let me help him. I’m glad.

So, two more days of IV antibiotics, then a long day of lots of chemo on Friday that begins five days of IV chemo administered at home. We’re ready.

Love,
Beth

Hopefully Our Last Night in the Hospital for a While

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photoOctober 29, 2009 So close… so close… just one more night without fever and we can go home! Nine days is a long time and we are all ready for this to be over and so thankful that she has recovered so well.

She felt so much better today with no fever, not even a low-grade fever. We will come home with her port accessed and have to administer IV antibiotics 4 times a day as well as 2 oral antibiotics. They taught us today how to flush her line with saline and use heparin to assure the line stays clear. It’s not rocket science, but still a little unnerving. They’ll teach us tomorrow how to do the IV antibiotic infusion.

She got to dress up today in a costume that the hospital gave her and they handed out Halloween goody bags. The Predators were there and they had a Halloween party downstairs, but Tanner is confined to her room and couldn’t go to any of that. She has not left her room for the entire nine days except to go to a CT Scan. I know she must be sick of looking at those walls.

We had a fun day. In addition to dressing up in the costume, we made some Halloween decorations for the door, had Chik-fil-a brought in by my good friend Melissa, played Wii with the physical therapists and watched some good movies.

Kida from The Lost Island of Atlantis

Kida from The Lost Island of Atlantis

So, barring any unforeseen fevers, we should be home for Halloween… a small miracle and we’ll take it! Now, if we can just do something about the rainy forecast…

Love,
Beth

The Good, the Bad and the Really Cute

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The Good, the Bad, and the Really Cute

October 29, 2009

We’ll start with the good news: the doctors believe Tanner is responding to the antibiotics and that we are on the right road to beating this thing. She is still having fevers, but they seem to be mostly pretty low grade and they are further and further apart. Thank God.

Then, there’s the bad news: I don’t think there’s any chance we will get home for Halloween. She has to be fever free for at least 24 hours and they want to continue giving her antibiotics by IV for a few more days and gradually take her down to oral antibiotics and see how she does before we go home. So… day 8 and still counting.

Here’s the Really Cute part: Jake came to visit today and the two of them sitting in bed eating bagels together was priceless. I could have cried. It was the most natural thing in the world and she was so motherly with him. He came in and said, “Hi Tanner. You not got any hair?” She just smiled and showed him the top of her head and said, “Feel it. It all fell out,” and that was the end of that. He just accepted her just like the big sister she is and moved on. John’s Mom also came and Tanner kicked both John and I out so she could be with Jake and her E.

She seemed to feel okay this morning, but was exhausted after Jake left and slept a lot. She seems worn out with being sick and the Zithromycin antibiotic they have her on is tearing up her stomach.

I miss my family. It has been more than a week since we have all four been together and John and I haven’t spent more than 20 minutes at a time together.

We have accepted the Halloween thing, though and John has come up with a great idea. We are going to ask our neighbors to keep their Halloween decorations up and let Tanner, Jake and a few friends Trick or Treat when Tanner gets home. Friends are helping to put together a flyer to distribute to the neighbors and go door-to-door asking for their help. On Halloween, they have a celebration in the hospital and do reverse trick-or-treating where the nurses and others come to the kid’s doors and give them candy. We’re going to bring Jake up here to “trick-or-treat” with Tanner and, hopefully, they will bend the two visitors to a room rule for that time so both John and I can be here with the kids. We figure we’ll have two Halloweens that way.

Please continue to pray for little Madelyn and her family. I saw Madelyn in the play room today (she is adorable) and she was doing well with her new port. Her parents continue to grapple with accepting what has happened to their child and dealing with the overload of information that they are faced with at diagnosis. It is such a difficult time and my heart breaks every time I see them. It is truly a club no one wants to join and I am so sorry to see another child and family start this rocky journey.

Tanner is asleep. A nurse is in hooking up her IV to start an antibiotic infusion. I’m going to put on my jammies, watch a movie on the computer (thank God for the laptops we all have) and go to bed.

No fevers, no fevers, no fevers….

Love,
Beth

Click Your Heels Three Times…

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October 28, 2009 Seven days of fevers and coughing. Seven days in the hospital. No idea when we are going home.

More fevers today… sporadic, but still there. She didn’t feel good at all today and I think she is starting to feel down as well. She has some neurapathy that has shown up in her right arm, which is hurting her when she moves it. I also think she is just plain tired from never getting a good night’s sleep here. She took a pretty good nap today, but even those are interrupted. She is on 3 antibiotics, which probably are taking their toll as well. I’m at home and just got a text from John saying she has been asleep since a little after 6 pm today, so maybe she’ll feel better tomorrow. The doctor today said, “It will just take time” so I don’t have any idea how much longer it may be but I can tell you we are all ready for it to be over and for her to come home.

She has realized that Halloween is this weekend and knows she could miss it. I will be so mad if she has to be disappointed about yet another thing she has to miss. Don’t you remember how magical Halloween was when you were a kid? It just seems like a right, not a privilege, to trick-or-treat. This disease is vile in what it does to a child… physically, spiritually, emotionally. Yes, we will get through it, but it infuriates me sometimes that we have to, that she has to.

So, pray that a six-year-old little girl gets to exercise a right to trick-or-treat this weekend. Pray that cancer doesn’t win this one.

Love,
Beth

Waiting for a Break

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October 25, 2009 Tanner’s fever broke sometime late last night and she remained fever free most of the morning, raising my hopes that we might be done with the fevers. Unfortunately, I was wrong and she spiked another fever at lunchtime. But, I think we’re making progress. We went fever free for a while and the fevers seem to be responding well to the Tylenol again. In fact, I believe she is fever free right now while she sleeps, so we’ll hope that continues.

Doctors told us today that she also has a sinus infection and added Zithromycin to her growing list of antibiotics she is taking. They expect we’ll be here the rest of the week and we are praying we’ll get home in time for Halloween. It breaks my heart to think she might miss it. She’s been really excited about it and has her Addams Family Wednesday costume all ready.

John came to the hospital this afternoon so I could go home and see Jake for a little while. I got the best hug from him when I came home. He is having a ball with his grandmothers, but this is so hard on him, too. John and I just pass through briefly and he keeps asking me where Tanner is and when she is coming home.

Please pray for Madelyn, a 3-year-old little girl from Franklin who was diagnosed with ALL last night. They live within a mile or so from us. She is on our floor and we met her dad today briefly and offered our help. I know how helpful Lily’s Mom, Larisa, has been to me and how great it is to have someone who is a little ahead of you in treatment to talk with. I caught a glimpse of Madelyn’s Mom today trying to calm her screaming child. I recognized myself in the look on her face… terrified, overwhelmed, devastated. Diagnosis is such a hard time and I hope that we might be of some comfort to them once they get their heads above water.

I’m going to sleep dreaming of a feverless tomorrow. Thanks for your thoughts and prayers.

Love,
Beth

Finally… A Reason for the Fevers

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October 25, 2009 After five straight days of unrelenting fevers, the doctors ordered a CT scan today to determine if she might have a hidden infection that was not showing up in her bloodstream. They found pneumonia in her left lung and believe that is what is causing the fevers, coughing and pain in her stomach and chest when she coughs.

Whew! I know it seems weird to be happy about pneumonia, but she has a better chance of winning if we know what we’re fighting against. I feel a huge sense of relief that there is something we can do about it instead of just watching and waiting. Her fever today reached 104.5, which starts to get scary.

They’re not sure whether or not the pneumonia is a secondary infection from a virus she may have had last week or whether she had it all along, but it progressed too slowly to show up on the two x-rays she had earlier. The CT scan is more sensitive and may have caught something the x-ray couldn’t see.

They had already added another broad spectrum antibiotic earlier today as a prophylactic measure since the one she was already on wasn’t stopping the fevers. So, they’ll give that a day or so to work and decide whether she needs another as well.

So, we’ll probably be here a few more days, I believe. She was really too sick today to be bored. She didn’t really feel like doing much. She mainly watched a Punky Brewster DVD I found at Target, took a big nap and played a little on her computer. She loved getting some emails from people, but I knew she didn’t feel well when she didn’t want to answer them or write a blog post.

On a positive note, her neutraphils continued to come up today… they are at 630, up from 490 yesterday, so we’re making progress.

She has handled herself with more grace than I would have considering how bad she must feel. I’m amazed at the maturity she has acquired through this horrible ordeal and, at the same time, sad she’s had to grow up so fast at six.

Thanks to all of you who sent Vandy email cards to the hospital. They brought them in all printed out this morning and they made her smile.

She’s sleeping soundly and I’m going to try to do the same before someone comes in for something else!

Love,
Beth

Still Hanging in There

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October 25, 2009 Tanner’s fevers continue, in fact, they seem to be defying the Tylenol now. Doctors are pretty convinced it’s viral since it’s not responding to antibiotics and her white counts have gone down since yesterday, an indication she is fighting something viral. Her hemoglobin was up a little bit, though and her neutraphils had made a big jump – from 190 to 450!!! Unfortunately, neutraphils fight bacterial infections, which Tanner apparently doesn’t have. So, we’re happy their going up, but they don’t help much in this situation.

She also seems to feel worse today. She was much more lively yesterday. So, I don’t really know where we are… I guess just more watching and waiting.

She and I sat and read all the comments about her new wig and hat today… it really made her smile. Thank you so much to everyone who has been so kind and had such good words of wisdom for her.

Tomorrow, we will get the remaining wispies shaved off of her head. The hospital has an approved hair shaver that, I guess, is extra careful about cutting heads. Hopefully, that will make her head less itchy.

Hopefully, the fever will break soon.

Love,
Beth