Category Archives: treatment

We Need Prayers

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I know you’re already praying… that’s just the kind of people you are… but we need to go into overdrive. Tanner continues to have fevers that come and go. Today, they were higher… 103. She is coughing almost constantly. She’s tested negative for all the known, testable viruses and, thus far, has grown nothing on her cultures suggesting she has a bacterial infection. Since she is not responding to the antibiotics, they think she probably has a virus, which they really can’t do anything about. They ran another chest x-ray today because of her cough worsening, but we haven’t gotten the results back yet. I think if it had shown pneumonia, they would have already started her on new drugs, so I’m assuming it was negative.

She actually feels fairly good and is in good spirits. When her fever spikes, she feels pretty bad, but tylenol brings it down and they give her oxycodone for pain and then she is better and a bit kooky!

A bed opened up in the oncology unit and we got moved there this evening. We’ve been on a general peds floor and we are grateful we have been moved to the floor where the nurses are more attuned to her particular problems. They drew more cultures tonight after her fever spiked again, so maybe something will turn up and tell us what this is so they can treat it better. It’s frustrating and we feel helpless when we are told the plan is to “stay the course and hope she fights it off.”

Her neutraphils and white blood cell counts have not improved at all and her hemaglobin and some other counts have dropped some. It’s scary, but we have to have faith that we are in the right place with doctors who will know how to make this turn out okay.

One funny story… we had a singing transporter today take us to the x-ray room. He had a wonderful voice and sang Elvis, Jim Croce, some Christmas songs and many others. He and Tanner sang Rudolph the Red Nosed Reindeer in the elevator and he made her promise that next time, she would teach him a Hannah Montana or Taylor Swift song. The people who work here are the very best kind of people.

You probably saw the picture of Tanner in her new hair today. It was a miracle that “hat wig” came in the mail today. It was supposed to take 5-7 days to get here, but arrived in 3 days, just in time. Tanner’s hair is all gone now save for a few wisps. She looked at herself in the mirror today and cried. She told me she looked hideous. Then, the wig came and she got so excited. She has even decided she wants the remaining hair shaved off as soon as possible, something that will make her feel more comfortable and will actually be cuter than the wispy pieces. She likes the new wig so much that we ordered another in strawberry blond! She’s deciding whether she wants brown as well.

So, I’m praying to the Virgin Mary tonight… I figure she’s a Mom too and knows what it’s like to worry about her child.

Love,
Beth

Hospital Update

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October 22, 2009 I’m writing from home; John and I did the hospital switch-off this afternoon so he is staying with Tanner tonight. Right before I left, after having been fever free since early this morning, she spiked another fever, this time 102, which is actually higher than it has been. Ugh. Tylenol brings it down, but it’s there and that’s not good.

She has to be fever free for 24 hours before she can come home. Her neutraphil levels also have to be on the upswing and the bacteria cultures also need to come back negative (we get those results back tomorrow). Her neutraphils were only up 30 over yesterday’s 190, a negligible increase which the doctor said did not “impress” her. So, looks like we may be there a little while. Again, I’d rather have her there right now; makes me feel better. I don’t like the fact that the fever keeps coming back despite the antibiotics she’s on.

On the bright side, she is coming out of the steroid funk nicely. It’s good to see her silly personality again.

Thanks for the good thoughts and prayers. We feel them and they carry us through days like these.

Love,
Beth

Settled In

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October 22, 2009 We’re settled into the LAST room available at Vanderbilt Children’s Hospital. Lights are out, Tanner is sleeping and no one is supposed to bother us for the next two hours. Admitting went so smoothly… usually on the night we admit, she never gets to bed before 10 pm, but they got all the admitting done quickly and she fell asleep at 7:30, right on time.

She felt so lousy earlier today, but perked up quite a bit after a dose of morphine. Now, it’s worn off again and she is feeling tired and bad. However, she did resolve the constipation issue before bedtime… nuff said about that.

We’ll be here for at least two days. We have to wait for all the test results to come back, which will take 48 hours, and they will want to see her counts come up some before they will let her go home. We can’t have any visitors; too risky. And, no fresh flowers when her counts are this low.

So much of her hair has fallen out today that she now has large bald patches. I doubt there will be anything left even after tomorrow. I can’t tell you what it feels like to keep having to comb out the dead hair that mats into the remaining hair. I filled a small trashcan up today once we got in the room. It’s rips me apart every time I have to do it. It’s like with each stroke of the hair filled comb, I hear a voice saying, “She has cancer. My baby has cancer.” I keep telling myself that it’s just hair and it will grow back, but it isn’t just hair. It’s the one thing that has kept me from being constantly, visually reminded that my child has cancer. Once she is bald, I won’t just know it, I’ll look at it every moment of every day.

After I combed so much hair off of her today, she put her hand to the back of her head and said, in a little panicked voice, “Mom, feel my head. You can feel it.” I told her that I didn’t think it would last more than a few days and I thought it was all going to come out. She asked if I would bring her wigs to the hospital tomorrow and I said I would. She said she was scared that kids would make fun of her and I told her I didn’t think they would; that her friends knew it would fall out and that their Moms will tell them before they see her so they won’t be surprised.

It’s oddly peaceful here in the hospital at night. Sure, you get interrupted by nurses taking vitals and noises in the hall, but that’s all become so familiar to us, that’s it’s comforting in a strange way. Here, I know she is the safest she can be. It’s certainly not 100% safe; most kids that die from leukemia die in the hospital. But, this is where doctors have the best chance of catching something early and this is where everyone she encounters wears a mask and gloves. It makes me feel better for her to be here when her immune system is so low.

The Children’s Hospital is wonderful; the most comfortable hospital I’ve ever been in. I sleep on a sofa that pulls out to a comfortable twin-sized bed; even John’s long body fits on this thing. The nurses are kind and very quiet, for the most part. The food is good with a huge menu you can order from. Tanner can get videos, games, crafts and all manner of fun things delivered to her room. We can’t leave the room to play in the playroom or go outside because of her counts, but they will bring us almost anything we want. They are kind and compassionate people, despite the fact that they see sick kids every day, and they recognize that a sick kid means a “sick” family and take care of parents’ needs as well.

Tonight, I will hear the lifeflight helicopter land on the roof more times than I care to think about. I can’t hear it without being reminded of Tanner’s time in the helicopter and I pray fervently for the child in it and the family who cannot fly with him or her and the pain I know they are going through not knowing what is happening to their child while in the air. I know it was the longest 25 minutes of my life when Tanner was on that helicopter. We knew she was in the hands of some of the most highly trained trauma physicians in the world, but it is still horrible not to be there. Thankfully, Tanner doesn’t remember it and I pray that no child does.

We’re lucky to have such resources so close by.

John has delivered us our necessities and my Mom has arrived to take care of Jake tomorrow so John can go to work. We’re tucked in and comfortable and I’m getting ready to watch last night’s espisode of Glee on my computer (Aren’t computers amazing?). I’m less terrified than I was earlier today when we first got here, so I think I’ll sleep tonight and I think Tanner will too.

Love,
Beth

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

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