Category Archives: prayer requests

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

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

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

Tanner’s New Hair

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photoThis is from Tanner:

I’m at the hospital. And my hair is falling out, but I’m very sad. Lily is another girl with leukemia and she is my friend and she gave me her wigs. One is dark brown and very long and is real hair. And the other one is dark blonde but fake hair. And my Mom ordered me this one and it is blonde just like my real hair. Here is a picture of it.

Love,
Tanner

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

In the Hospital

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October 4, 2009
As we feared, Tanner woke this morning with a fever and her cough had worsened. We didn’t wait for her appointment for the Peg Shots, but took her right in instead. I also woke this morning worse for wear, so John took her since I can’t expose the kids on that unit to my germs.

They found the beginning stages of pneumonia, so they are keeping her at least overnight and giving her IV antibiotics to help her recover. She escaped the Peg shots today… they haven’t said when they will give them, but we did learn that the Atavan works wonders for her anxiety. We gave it to her not knowing if they would give her the shots or not. They were going to give them to her initially, and even went so far as to put numbing cream on her legs and she handled it with great humor. But, once her oxygen level started dropping due to the pneumonia, they decided not to give them today. Thank God. All she needs is to be nauseated and throwing up on top of this illness.

I went to the doctor, too, and have bronchitis, so I cannot go to the hospital tonight. It is killing me not to be there.

John’s Mom is coming in the morning to help, so we’re all good. It will just be Jakey and me tonight.

I’ll keep you posted if we find out anything else.

Love,
Beth

We’ll See What Happens Tomorrow

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October 4, 2009 We’re just sick and tired… or at least I am. Tanner woke up Friday morning still pretty sick and slept for several hours mid-morning while my good friend Shelley took Jake to McDonalds with her little boy to play. By afternoon, though, Tanner was feeling a little better and by evening, it seemed like the worst of the nausea was finally at bay. Saturday morning she woke up feeling good and John took she and Jake bike riding in the morning. In the afternoon, we played on the school playground next to our neighborhood and I was impressed by how far she ran across the field and how much energy she seemed to have. But, she and I both began to cough Saturday afternoon. By Saturday night, both of us were hoarse and coughing quite a bit.

So, all day today, no one got out of their jammies. We played on computers, watched TV, painted our faces and generally took it easy. Tanner had a low fever in the 99s this afternoon and we started getting ourselves ready for a trip to the ER. But, her temperature had returned to normal by bedtime. So, we’ll keep an eye on her and hope for the best.

I can tell you that I had no energy at all today and felt pretty bad. So, I’m assuming she felt the same, but you would never know it. I kept telling John I was going to be pretty embarrassed if a kid with leukemia on tons of chemo kicked a cold that I couldn’t kick, but it may be true! She definitely had more energy than I did today.

We’ve been waiting for the steroids to rear their ugly head, but so far, so good. She’s had three full days and I suspect by tomorrow, we’ll start seeing some effect. For now, though, she’s been very good humored and isn’t eating a ton either.

So, tomorrow is a dreaded day… Peg shot day. I will be interested to see if they even give her the shots considering she obviously has some kind of virus. Even though I dread the shots, I just want to get them over with. I just get sick every time I think of it. It’s one of those moments when I feel like I am lying to her by not telling her about them, and even though I know it makes it easier for, I feel rotten about it. I just will never forget her looking at me and asking, “Why did you let them do that to me?” the last time we had these shots. Hopefully, the anti-anxiety drug we will give her beforehand will make it easier.

I’m not really sure how the chemo given through these shots will affect her. The side effects listed in my childhood leukemia book are numerous, but she was so sick from the leukemia last time she had these shots, you couldn’t tell what came from what. She goes back again on Thursday to receive Vincristine and the Doxirubicin that made her so sick last week. Needless to say, I think this is going to be a very tough month.
So, we need some positive mojo, here… prayers, well wishes, good karma in the universe… all these things. Hopefully, no fever by morning and the Peg shots go as well as possible.

Love,
Beth