Quick Update

April 11, 2011

Tanner is feeling good today. Her cough is resolving nicely. Going to pick up homework from the teacher so she can keep up with her class. Reading Little House on the Prairie… she’s almost finished. Playing lots of Monopoly and Life. Living in our pajamas and watching movies. Making lemonade as best we can.

Sadly, she is experiencing some side effects from her increased chemo dosage that make us all feel like we’re going back to the beginning of treatment. So heartbreaking for all of us, but especially for her. She is devastated and frustrated and mad. Cancer is wily and evil and is getting in it’s LAST licks before we are finally done with it… but we WILL be done with it… just four more months.

I found comfort today in these words from Elizabeth Edwards. I wish Tanner were old enough to fully appreciate what Elizabeth went through and how resilient she was all the way to the end. It might bring her comfort, too. Amazing woman, that Elizabeth. Amazing child, my Tanner.

“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
— Elizabeth Edwards


Clinic Day #50 — unexpected

Clinic Visit #50 – Unexpected

April 5, 2011

Tanner has been coughing for what seems like months. She does have a “habit cough,” which is just what it sounds like, a habit. But, she has also struggled with viruses or allergies or something that has caused congestion and extra coughing. She took antibiotics for two weeks last month for a sinus infection and we thought we had it licked, but this weekend, she started coughing again with a vengeance.

When she woke up yesterday morning, she wasn’t coughing and I thought maybe it had been allergies and sent her to school, but got an email from the teacher saying she had coughed all day and it didn’t sound like her regular cough.

We got up this morning, dropped Jake off at school and Tanner and I headed into clinic to check it out. When we got there, the doctor couldn’t see us until later in the afternoon, so we trekked back home and came back again later with Jake in tow.

Thankfully, her lungs and ears were clear, so they just suspect a virus of some kind, but when her counts came back, her total white cell count had dropped by 2/3 from just two weeks before and her hemoglobin was down lower than it has been in almost a year. The machine count did not pick up any neutraphils at all, which can either be a mistake or mean her neutraphils are wiped out. Neutraphils are the big infection fighting white cells and without them, you have no real immune system. They’re doing a hand count on her neutraphils and as of yet, haven’t gotten the results yet. So, we held her chemo tonight, just in case and have holed up in the house assuming the worst for now.

I checked Tanner’s lab results for the past year and half and her white cells haven’t been down to 1,000 in more than a year. When they were that low, her neutraphil count was 130… severely neutrapenic. So, it doesn’t look promising.

She hasn’t been neutrapenic in such a long time. We’re really lucky we’ve had such a good run, really. But, it does mean she can’t go to school or anywhere, really, until her counts go back up. No real contact with anyone unnecessarily. No fruits and vegetables that can’t be peeled. No fresh flowers in the house. There’s more, but I honestly can’t remember… it’s been that long. I’ll have to read my handbook from the hospital to be sure we’re not doing anything stupid.

Anyway, hopefully, the virus will pass without any other infection and her counts will come back up without the chemo to suppress them. But, it would not surprise me if she got a fever and we had to go back. Sigh.

I’ll post again tomorrow when we know for sure. Meanwhile, I’ll leave you with this parting photo of Tanner and Erin Stryker who was Tanner’s Wish Coordinator for our Make a Wish trip to Disney last year. Erin has become a dear friend and she never ceases to amaze me with her dedication to helping others. In addition to volunteering for Make-A-Wish, she also runs marathons for Team in Training, the LLS’ fundraiser. She came to the Light the Night Awards with us last week and the picture is of she and Tanner standing on the famous “circle” at the Grand Ole Opry, where the event was held. Tanner about fainted when we told her Taylor Swift had stood on that circle many times before. “What about Dolly Parton?” she asked, wide-eyed. “Yes, Dolly Parton too.” Priceless.


Counts Update

February 18, 2010

I didn’t actually run down the street screaming pulling my hair from the roots, but I wanted to. Tanner’s counts were up, but barely. She’s at 430… anything below 500 is considered severely neutrapenic and below 1000 is neutrapenic. Carie assured me it is normal to have this happen sometimes and that after all the chemo she has taken, sometimes it takes the body a while to recover from a counts hit. So, same old, same old restrictions and come back next week for her monthly clinic visit. Still no oral chemo, but they will give her a dose of vincristine and she will have a lumbar puncture with methotrexate next week, regardless.

Stick a fork in us.


Counts Update

February 7, 2010

Just a quick update on our counts check today… Tanner’s neutraphils had climbed to 230, up 100 from Monday. Not as much of a jump as we had hoped, but at least headed in the right direction. The doctor wants us back next Thursday and told us to keep her off of her oral chemo until then. Tanner should definitely feel good with this break from chemo even if her immune system sucks. So, more isolation, which stinks.

Thanks for all the prayers… they worked. Now, is it greedy to ask for her counts to go up more quickly?



December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!


Home from the ER

December 29, 2009

Tanner and John stumbled in from the ER at 12:30 last night. Tanner’s chest x-ray’s were clear, so no pneumonia, thank God. Her counts were once again very elevated, indicating that she is fighting an infection. They gave her a broad spectrum antibiotic and sent them home.

This morning, she is fever free, but seems pretty tired. We’ll just take it easy today and hope all of us continue to recover. Boy, talk about one step forward, two steps back. It’s frustrating, to say the least.

Back to clinic on Thursday for her monthly dose of Vincristine and the start of a five-day steroid pulse. Joy.


A Long Day at the ER

November 22, 2009

Since Thursday, when we went in for clinic and Tanner’s hemoglobin was so low, we’ve been keeping a close eye on her for signs that it was dropping even further or that it was producing symptoms that made her uncomfortable. After asking me to take her to bed at 6:30 last night, she woke up this morning with a headache and was very washed out looking. We decided not to wait until tomorrow to take her to clinic, so John took her to the ER around 11 am.

They arrived home at 9 pm with fresh blood and platelets in her system, tired, but with rosy cheeks and red lips. Her hemoglobin had dropped down to 6.6 from 7.2 on Thursday (anything under 8 is grounds for a transfusion, but Tanner was not showing any symptoms then so we decided to wait) and her platelets were down to 28 (normal is somewhere around 300). So, two bags of platelets and one bag of blood later, she should be feeling a lot better. Her neutraphils have, thankfully, not dropped from Thursday, so hopefully those have bottomed out and will start going back up so she is less vulnerable to infection.

We weren’t surprised or too upset that she needed a transfusion; it’s almost expected during DI and Tanner has really been lucky that this is only her second transfusion since diagnosis. We’re just thankful that she hasn’t caught anything while her immune system has been so compromised the past few weeks.

The anemia didn’t slow her down a whole lot this weekend. Saturday, Jessica, our friend, babysitter and petsitter extraordinaire, came and played with the kids all afternoon while John and I cleaned out the attic and garage and went to lunch together at Puckett’s in Lieper’s Fork. We were playing at the elementary school playground next door to the house when Jessica got there and Tanner never slowed down until Jessica left. They danced, played wii, and pretended all the day long. I think Tanner was just happy to see someone else but John, Jake and I. It’s been a while.

After John and Tanner left for the hospital today, I shaved Jake’s head. He wanted to look like Daddy and Tanner. All those little curls in the trash can. He loved it, though! I thought it was so cute that he wanted to look like them.

Jake's new hairdo

Jake's new hairdo

It looks like it will be another “keep to ourselves” kind of week… at least until Wednesday when we get our next counts check. That will let us know whether we can see John’s family for Thanksgiving or whether we need to keep it simple here at home with just us. It would be great to see John’s family, but either way will be fine; the way I see it, we have a lot to be thankful for.


Clinic Day #20

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

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

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

It’s over and I’m glad.


Hospital Update

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.


Settled In

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.