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

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