In the Hospital…again

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Tanner’s counts today were so low at clinic today (neutraphils at 190 which essentially means she has no immune system at all) and she is still coughing and has a runny nose, so they decided to admit her. Since then, she has also spiked a fever, which they said was inevitable with the low counts. We’ve just had a chest and abdominal xray to check for pneumonia and try to figure out why she hasn’t pooped in 4 days (ouch!) She’s also not peeing this today, which is even more abnormal considering one of the unexplained side effects of the chemo has been peeing every 15 minutes. They’re hoping she’s just dehydrated. She’s getting fluids and IV antibiotics and waiting for a room.

The doc just came in and said she tested negative for both flus, which is good, and that her chest xray was clear, thank God. Her abdominal scan showed minimal blockage in her intestines so they’re not sure why she’s so constipated. They’re testing for a comprehensive list of viruses and bacterias, so they may eventually figure out what she has, but either way, she’ll need to stay here until she levels out and maybe her counts go up some.

My Mom is on her way, so we’re good. I’ll update later today when I get a chance.

Love,
Beth

Kicking those steroids to the curb

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October 21, 2009 Tanner finished this pulse of steroids tonight! Yay! No more until Long Term Maintenance. It is my understanding that steroids affect the kids in all different ways… some get hyper, some get really belligerent, some get super sad. Tanner acts as if she has been run over by a truck. She is just limp— physically and emotionally. Today, I was helping her get to the bathroom and I noticed she didn’t grip my hand at all, she just let it lay in mine… limp.

I am feeling better today. The antibiotics kicked in and I was even able to take off my mask. My friend Beth invited us over this morning to hang out at her house with mutual friend Anna Lynn and her daughter Elise while the two earth mommas were making applesauce (no one even suggested that I participate in that!). It was a great idea because it gave me the opportunity to wear Jake out running on Beth’s acre and a half while Tanner could lie on the couch. Tanner really wanted to go, even though she felt so bad. I carried her to the car and she slept most of the way there. When we got there, I carried her in the house and put her down in a big, comfy chair and she never moved until we left. Just sat in the chair and watched TV and spoke when she was spoken to. Poor thing. Jake did get the expected exercise looking for the geese that were not at the pond and jumping over goose poop (his idea, not mine). Tanner got a change of scenery, but she was wiped out when we left.

Beth and her husband Glenn came over later and made us some yummy shrimp scampi and ate with us. It was a nice day, despite the fact that Tanner felt so lousy.

Now, we just have to wait until the steroids get out of her system. She started to get a stuffy nose and is coughing tonight, so I’m hoping she’s not getting sick. She said it was hard to breathe, which could either mean her lungs have some fluid in them or she could have low hemoglobin, which carries oxygen in your blood.

She is also losing hair by the fistful. At this rate, she may not have any hair by next week. I must have combed big piles of dead hair off of her 7 or 8 times today… it’s heartbreaking. She doesn’t seem bothered by it, but she’s so numb from the steroids, I don’t know if that’s a true reaction or not. I pulled a big hunk off her back today and put it in my jewelry box so later, when she is bald and missing her hair, we can pull it out and remember how beautiful it will be when it grows back.

This is definitely the most tenuous and stressful phase of her treatment besides the first month after her diagnosis. It is every bit as difficult as we imagined it could be. I am worried constantly. Does she look anemic? Is she getting sick? What will this next round of chemo do to her? Will she need a transfusion? How will she handle losing her hair? Will she be able to trick-or-treat? Etc., etc., etc. It’s exhausting. Oddly enough, I’m not normally a “worrier.” But, you would have to be dead not to worry. I’m trying to just look ahead one day at a time… that’s all I can really count on.

Tomorrow is Clinic Day. We’re just going in for counts, so it should be quick unless she needs a transfusion, and then it will be really long (see what I mean by not being able to count on anything?). Hopefully, she beats the sniffles and doesn’t wake up sick. They told us she would likely be in the hospital 2 or 3 times during DI, but surely they didn’t mean all in the first month?

Love,
Beth

The Freaky World of Cancer

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mommy in maskOctober 19, 2009 Yes, it’s me in the mask. Fuzzy picture taken by Tanner, from whom I am trying to keep my throat infection germs. I tested negative for strep, but have some kind of throat thing and the doctor mercifully gave me antibiotics to try to make it go away fast before I give it to Tanner. Hence, the mask. Attractive, no?

The last two infections I have had, Tanner has also picked up. Whether we got it together or she caught it from me I don’t know, but I do know I need to stay away from her until these antibiotics have a chance to work.

As usual, my best friend, Beth, rescued me. She stayed with the kids for many hours today while I tried three different clinics and two different pharmacies to get what I needed. I literally don’t know what I would do without her. My Mom and John’s Mom are lifesavers and so willing to help, but they live 2 and 3 hours away. Beth is always there when I need her. She is family, and my kids couldn’t be any more her niece and nephew if we were related by blood.

Which brings to my point of this post, which is to acknowledge that, in order to survive something like this, you have to let go of your independence and your assertion that you can handle things without any help from anyone else. You can’t… trust me. You need help, and plenty of it. It takes a village to see a child through cancer, especially the kind that lasts 2 ½ years. I know I may not always accept help as gracefully as I should, but please know that it doesn’t mean I don’t appreciate it. I do… believe me. I just don’t want to need it. I think it is part of my desire to have a normal life where I didn’t need people to take care of my kids for days at a time, cook me meals, fold my laundry, etc. I want to do it all myself, but thank God for those of you who realize I can’t and do it anyway. I love you… really.

Tanner is still feeling pretty rotten. Every day she takes the steroids, she retreats a little further into herself and gets a little more limp. She lies on the sofa and watches TV or plays on her computer. If you turn off the TV, she will just lie there and stare into space or doze off. She asked John to take her to bed at 6:30 tonight, but will have trouble sleeping. Last night, she woke up 3 or 4 times, once at 3 am for some “cheesy snacks!” Thank goodness we have the prior experience with the steroids and know this is normal and will go away within several days of stopping. She only has two more days of the steroids, so I think she’ll start coming out of it Friday or Saturday. Then, she is done with steroids until she starts long-term maintenance in a month or so. But, they are a very important part of leukemia treatment and she will take them the first five days of every month for the remaining year-and-a-half of maintenance.

So, we’ll just keep renting movies and letting her lay on the sofa until they start wearing off.

I’m off to bed, hoping the antibiotics will work their magic overnight and I will feel better tomorrow.

Love,
Beth

Couch Bound

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October 18, 2009 Poor Tanner hasn’t gotten up off the couch for two days now… the steroids do this to her… she just feels cruddy and is sullen and whiny. She looks so pale and sick, it reminds me of the first month after she was diagnosed. She keeps asking me when she is going to feel better, and unfortunately, I think it will be 3 more days of steroids plus a couple of days for them to wear off.

The cumulative effect of the doxorubicin seems to have set in as well. She has painful blisters on her lip and her hair has begun to fall out again. She’s pitiful and it’s hard to watch, especially knowing that she’s going to feel worse in a couple of weeks.

This Thursday is just a counts day, unless she needs a transfusion (apparently, they expect her counts to have fallen significantly). It’s a week off designed for counts recovery before starting the second half of DI, which is purported to be the worst 4 weeks of the whole 2 ½ year treatment. Two days before Halloween, Tanner will spend all day at clinic. She’ll have to be put under for a spinal with methotrexate chemo. Then, she’ll have to be hydrated for several hours before she can receive an hour-long infusion of a new chemo called cyclophosphamide. Then she has to be hydrated for several hours afterwards. She will also start an oral chemo called TG that she takes for two weeks. She also gets another new chemo called ARAC. We go home with her port still accessed (like going home with an IV line in your arm) and we give her the ARAC through her port every day for five days. It’s a brutal, inconceivable day of chemo that should pretty much mess up Halloween. I figure if we did Light the Night in a wagon, we can trick-or-treat in a wagon, too.

So, it’s hard to comfort your hurting child when you know what’s coming around the corner. We’ve explained to her that this is the hard part and that we have to just dig deep and get through it.

Moore Elementary School has been our bright spot in the last few days. Yesterday, Tanner’s at home teacher, Mrs. O’Hara, brought a book that a second grade class made for Tanner. They made her their star of the week and each child drew a picture and wrote an entry about why Tanner is their star. They obviously had read the blog and looked at the pictures because they wrote about her doing hip-hop and ballet and told her that she is pretty and a great reader. This stuff is priceless and I know we will get it out and read it when times get tough. The school has also shown a Charlie Brown movie to some of the classes about a little girl with leukemia. They brought it for us to watch; I’m going to look at it tonight and decide whether it would be a good thing or too close to home. We so appreciate them wrapping their arms around Tanner this way. She really loves it.

In this journey, we have found, there are some times when it is easier than others to laugh and find joy in life. In the times when it is not so easy, I try to find humor wherever I can. So, I’ll share with you what has kept my sense of humor today… Tanner’s steroid-inspired appetite. While I have written this post, I have stopped twice to make food for her… once to reheat tater tots and once to make a pizza which she asked me to start making while she was eating the tots so it would be ready as soon as she was done. Too funny!

Please pray for us… I woke up this morning with a sore throat and am trying to keep my distance from Tanner. No germs, no germs, no germs.

Love,
Beth

An Ode to Steroids

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October 14, 2009

Oh steroids, how I hate thee
The way you make my daughter acteth like a monster
The dozen of meals I make a day because of you
Make me hate thee all the more.
The kicking, the screaming, the tantrums you cause
You are like an eclipse on the darkest of days
How I hate thee,
Let me count the ways.

Apparently 7 days off of steroids just isn’t enough for them to fully leave Tanner’s system, so now day 2 of this pulse of steroids is really just a continuation of the last pulse… day 9, if you will… which is when all the fun really begins.

Poor Jake said to me today, “Mom, she cares me,” which in Jake-speak means, “She scares me.” He just didn’t know what to do… she would call him into her room to play and then 10 seconds later, scream at him to get out and leave her alone.

On the plus side, she did make efforts to calm herself. She went to her room several times and got under the kitchen table once to try to get hold of herself. By bedtime, she was just a cranky, pitiful whiny mess. John carried her to bed and she lay with her back to him while he sat on the floor and read her a story.

Five more days… we can make it.

She is ravenous, as usual when on steroids, and I am frankly hopeful that she will gain some weight over this week. Her legs have gotten painfully thin and a little buffer to get us through the next 5 weeks of DI would be great.

Yesterday, she ate a corn dog, French fries and a slush at 9:30 am on the way to clinic after having 2 big bowls of cheerios for breakfast. Then, at 12:30 on the way home from clinic she ate another corn dog, tater tots and milk. The nausea then set in and she stopped eating until dinner. Today at lunch, she ate 2 bagels with cream cheese, two gogurts and two helpings of pineapple, got up and cried that her stomach hurt from eating too much. Then, five minutes later, said she felt better and wanted chex mix. I made her wait 15 minutes (really only 10 because I couldn’t take any more whining). Twenty minutes after the chex mix, I came down from putting Jake down for his nap and heard her in the fridge. She was pouring herself a glass of milk and had a cup of goldfish, which she refilled twice over the next hour. I think she is probably about a day away from all-night eating. Insane.

It is a little painful to see her “argue” with herself over the food. She knows that if she eats too much her stomach will hurt, but she is so compelled by the steroids to eat that she literally talks to herself about it. “I’m just going to wait a little bit before I eat this… yes… I’m afraid my tummy will hurt… but maybe just a few minutes, cause I’m really hungry… I really want it… maybe just a few more minutes, etc., etc.”

She takes Dexamethasone, which is 4 times as powerful as prednisone, if you have ever taken that for anything. I have taken the prednisone,and by night 2, do not sleep at all. So far, she is sleeping, but I suspect that will change in the next night or so.

Meanwhile, we’re trying to be patient without letting her get away with murder. She knows that they are making her act bad and she seems very sorry about it and is trying to control it as best as a six-year-old can.

Did I mention it’s just five more days?

Love,
Beth

Clinic Day #18

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October 14, 2009

We had a smooth day at clinic today. Tanner was totally nonchalant about having her port accessed and we actually had a pretty good time joking and visiting with all the nurses, doctors and the childlife specialist.

She got a dose of Vincristine and her last dose of Doxirubicin (red chemo, as Tanner calls it), thank God. She handled it really well, though, and was definitely not as sick this afternoon as she has been before. It seems like she acclimates to the chemo over time and it has less and less effect each time. She was very tired, however, at bedtime and her right leg is hurting her, so she was limping.

The biggest blow today was the doctor telling us we could not get a new dog any time soon. He wants us to get several months into long-term maintenance before introducing a new animal into the house. We were under the impression that puppies were the real issue and so we had begun to look at year-old dogs from rescue. Looking for a dog was a great distraction for all of us… it gave us something to think about besides cancer and something fun to look forward to. Tanner was pretty bummed and the doctor said, “You can hate me for it, Tanner; it’s not your Mom’s fault.” She just looked up and him and smiled and said, “I won’t hate you, Dr. Mixan, I’ll just hate the leukemia.”

I think I’m the most bummed of all. I was really looking forward to getting a new dog and I’m just mad that this stupid disease takes and takes and takes from us.

On a more positive note, the Great Pumpkin visited our house today while we were at clinic and decorated the front of our house for Halloween complete with a ghost, spider webs and giant spiders. Thanks, Aunt Kim… we know who you are! Tanner and Jake loved it.

I’m wiped out. I don’t know why clinic days, no matter how smooth, make me so tired. Something about seeing all those little pale faces and bald heads exhausts me. It’s just not fair and it never gets any easier for me to realize how many kids there are with cancer. Some look so sick it just breaks your heart.

Good grief, time to go to bed. This post is getting depressing.

Love,
Beth

You Can’t Stop Progress

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October 13, 2009

Tanner and I dropped Jake off at school this morning and, after stopping at Sonic for our usual drink orders, headed to Sweet and Sassy for a haircut. She has been feeling really good the past two days and I wanted to do something special on our day together. Tanner has not had her hair cut since long before she was diagnosed, and it certainly didn’t seem prudent to cut it while it was falling out, but since she has held on to it so well, I thought it could benefit from a little trim to make it look prettier.

Amazingly, the hairdresser told me that Tanner is growing NEW hair. Sure enough, I look and little sprouts of hair are standing up all over her head. How can this be? With as much chemo as she is processing at the moment, how can something be thriving?

Then, I thought about how in some ways, I feel as if we have been standing still for the past 4 ½ months. Waiting… lots of waiting… for doctors, for medication, for the worst of this to be over so we can try to pick up our life and resume some normalcy. But, unbeknownst to me, Tanner has not been waiting… she has been growing. She is too little to understand what this process should be doing to her body, to her life even… so she does the only thing that kids know how to do… she grows.

Her homebound teacher, Mrs. O’Hara, told me yesterday how pleased she is with Tanner’s progress lately. The two of them have found a rhythm that, if anything, is allowing Tanner to progress in her schoolwork at a faster pace than traditional schooling would allow. Her reading is improving by leaps and bounds and she is a spelling demon. At a time when I worried that she would fall behind her classmates, she continues to shine and grow.

I have also noticed a new maturity in the past few weeks. She seems calmer, somehow. Some of the frantic energy that gets her into trouble seems more in check than normal. She seems to be thinking more before acting or speaking. I haven’t had to discipline her in quite some time and it is nice for it to be so peaceful.

So, while I’ve been busy trying to just hang on until Long Term Maintenance, Tanner has quietly moved on with things. I could take a lesson.

I went to a Board Meeting for Jake’s school tonight and it was so nice to talk about something other than cancer. I probably need to make a better effort to keep growing during this time, too.

Over the weekend, Tanner received cards from a 4th grade class at her school and from her own 1st grade class that meant the world to her. To see that she is missed and the kids want her to come back made her light up. She read the cards over and over again, smiling. It’s the first time, I think, that she has felt missed at school.

So, we’re putting last week behind us… it was rotten, but we made it and that’s what counts. I am a firm believer that it doesn’t matter how messy it looks while you’re making it through, it’s the fact that you came out the other side that matters.

Now, I am going to sleep in my daughter’s room… again… because she can’t sleep without the dog. Anybody have a sleepy dog for rent?

Love,
Beth

We Almost Made It Through Sunday

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October 11, 2009dec 08 015 Just when we thought we had gotten through this rotten, unending week, our beloved border collie, Millie, died today. She was 12 and over the past few months, had seemed to be getting old quickly. Today, she suddenly was unable to move and John quietly took her to the emergency vet so as not to upset the kids. The vet said she had several cancerous tumors and one had ruptured causing internal bleeding. John called to say she would only live an hour at best and I piled the kids in car and left a check taped to the door for the pizza guy who was on his way. In the car, I explained to Tanner that Millie was an old dog and had a cyst that was bleeding in her tummy and that the kind thing to do was to keep her from suffering any more.

Together, the four of us said goodbye to our sweet, gentle, Frisbee-loving dog and watching her pass peacefully. Tanner sobbed while Jake patted her and said, “Bye, bye Millie.” This sweet dog slept at the end of Tanner’s bed every night to keep away the monsters and keep a child with an active imagination “safe” at night. She was intelligent, loyal and the model of good doggy behavior. She is already missed.

Sadly, Millie’s passing is just one more loss for Tanner. Millie was her security blanket at night and she has been up 4 times already in the first 2 hours after bedtime. John will go sleep in her room tonight; if I go, I will wake her with my coughing. It was the worst possible time for this to happen (not that there’s a good time for your dog to die) when she most needs comfort and security in what is often a very scary world for her. I’m not sure what we will do.

John is devastated and keeps questioning whether he did the right thing by not opting for a surgery option which the vet said would only give Millie a few months. It would definitely have been nice to have some time to prepare Tanner for her passing. It was just so sudden (it all happened in a matter of an hour) and I think it’s hard not to second guess a decision you feel you made in haste, even if it was the right one.

We’re all tired from the week behind us, with nothing to really look forward to this week.

As John said when I came down from putting Jake to bed, “I want a do-over.” I think he was talking about the dog, but I was thinking about 2009.

Love,
Beth

Clinic Day #17

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October 7, 2009

This evening as I stroked Tanner’s head and tried to comfort her until the Zofran and Oxycodone kicked in, I looked down to see two bruises on her thighs where the Peg shots were administered and was reminded of all she has been through in this seemingly endless week.

Those long-dreaded Peg shots turned out to be just one of the many trials this week that have shed some light on why this stage of treatment is called Delayed Intensification. First, there was the pneumonia-ish illness, three days in the hospital, the Peg shots, a breathing treatment that burned her mouth and upset her terribly, the steroids and, finally, back to the clinic today for Vincristine and the nauseating Doxirubicin.

She seemed very tired this morning before going to the Clinic and had a little crying jag about having to take a bath and having to go to Clinic. She wanted me to go with her, which of course I couldn’t, but John’s Mom went with them, so she got to have her E. with her. Clinic went well and she seemed to be feeling pretty well when she got home with her steroid-inspired McDonald’s Happy Meal. But, shortly after eating, she began feeling bad and fell asleep for several hours. When she woke she felt terrible, but we were able to get her nausea under control with medication, so we did better than last time overall. She has figured out that it’s the red chemo that makes her so sick and asked why she had to take something that made her feel so bad. When I explained that we only had to take red chemo one more time, she said looked at me with her pale little face pinched in pain and said she could stand one more time… amazing.

Surprisingly, the steroids have been fairly anticlimactic. She has really handled them well, with minimal mood swings or erratic behavior. The food obsession has kicked in and she wants cheese, grease, fat and more cheese. She literally begged me for McDonald’s hash browns this morning and I found myself at Kroger at 6:30 buying Velveeta for nachos! We finished the last steroid pill this morning and are off them for the next week…. Hurray!

So, now is the really hard part… knowing that we will do it all again next week… and the week after, and the week after. This is a marathon for sure, and there is little time to regroup before the next big hill is upon you.

My poor husband wins the MVP award this week. He has been Mom, Dad, Employee and Nurse this week and has kept his sense of humor to boot. There was a point today where he looked a little like if someone asked him for one more thing little pieces of him might start falling off of him… an ear, an arm, a finger. He just looked too stretched and I felt terrible that when everything was so awful, instead of pulling my weight, I had been just another burden this week. Bronchitis is hard for me to kick and even though I feel better, I still had to lie down for the majority of the afternoon in order to stop coughing.

And, Most Valuable New Recruit goes to John’s mom who rescued us this week, for sure. She has a job and a very busy life and dropped everything in a moment’s notice to help us. I, literally, could not have done it without her. I was down for the count on Tuesday and could not have taken care of Jake that day. Thanks to her, I was able to get the rest I needed.

And, last but not least, to my friends who showed up at my door with food (you know who you are)… what can I say? We are being carried through this journey on the shoulders of those we love and who, thankfully, love us back.

Week one of DI down, seven more to go. Don’t leave us now… we’ll be needing you…

Love,
Beth

Coming Home!

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October 7, 2009

Yay! Tanner is coming home this afternoon. Can’t wait to get my hands on that girl! Jake and I have missed her and Daddy terribly.

She does have to go back tomorrow for clinic and chemo, which sucks, but we’ll cross that bridge when we come to it.

Had the Peg shots last night and John said they went as well as he could have hoped, considering they are so painful. The Atavan was a gift and we will be using it for these types of procedures from now on.

She is still hoarse and coughing quite a bit, but the docs feel like her lungs sound good and she is full of very powerful antibiotics.

Nuff said.

Beth