Category Archives: diagnosis

In the Hospital

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May 1, 2011

When Tanner was diagnosed with Leukemia, I thought it was going to be the most difficult day of my life. But, at least there was a concrete plan of how best to treat her. There were numbers and statistics and protocols based on years of research. And, I knew that nothing any of us had done caused it, and nothing we could have done would have prevented it.

Today is different; and in many ways, worse. Tanner is inpatient at Vanderbilt for a psych evaluation after two tough days that led us to the decision that she needed more help than we, or a visit to Allison, could provide. I don’t want to give a lot of details, because Tanner deserves some privacy as she struggles to deal with a disease that had me reduced to a day full of tears and xanax just last week. If it is more than I can bear sometimes, I think it is not unrealistic to expect that it is more than a 7-year-old can bear sometimes, too.

We are also concerned that her antidepressants could have backfired. Anti-depressants and kids are known to be tricky and the labels on her medicine warn that it can cause suicidal thoughts in children.

She has also had a very rough couple of weeks. I didn’t write about it, again to give her some space to deal with it without others knowing, but since she told her whole class about, I figure she wouldn’t mind. She began losing her hair again last month after her chemo. We were so blindsided; we had no idea that this could happen again. John found her crying on the slide at the playground and she told him that she had known for days that it was falling out, but thought we would think she was stupid for thinking that. Turns out, it happens sometimes. It seemed like an unimaginable cruelty to have it happen so close to the end for her. Like cancer was trying to get in it’s last licks. It stopped falling out after about two weeks and, although she is noticeably thin on top, she still has her hair and it has not happened again after this round of chemo. Still, it was incredibly difficult for her… for all of us, really.

Then, we had my colossal mistake… where I thought her LP a few weeks ago was the last one… only it wasn’t. I don’t think she can really get over thinking maybe I lied to her on purpose. I know I had a rough couple of days after that one and still haven’t really forgiven myself for it, but it is what it is and I can’t do anything to change it.

Then, this week, we sent Jake to my parents for some much needed special time. It’s hard being the “other kid;” the one who doesn’t have cancer. He needed that one on one attention from his grandparents, and I needed some time alone to regroup and reorganize. Unfortunately, in meeting our needs, I think we hurt Tanner. It was very clear to me during the week that she was so sad that she can’t go to her grandparents house alone for special time, and she knows it’s because of the leukemia. Balancing everyone’s needs in this case seemed precarious at best.

Allison believes that Tanner wanted to come to the hospital and did what it took to get herself here. She believes that Tanner’s world felt very out of control and that she feels safe here as an inpatient. I wouldn’t disagree with that, but I also think we could have a medicine issue as well. There is also a plethora of documented research linking traumatic stress disorder and post-traumatic stress disorder to kids who have cancer. I think Tanner definitely could fall into this category.

The psych team will come in the morning to evaluate her and, hopefully, we’ll know more then. This is, by far, one of the most tormenting things I have ever been through. To not feel like there will be a clear plan for how to deal with her issues. To feel like something we did, or didn’t do, could have exacerbated her problems. To know that we most certainly made some mistakes that may have hurt her. It is agonizing and I wouldn’t wish it on anyone.

I know that I can count on you all not to share this information with your children, who might tell other kids at school that Tanner is having these kinds of problems. Children can be cruel, even unwittingly so, and I would die to know that this blog had caused her any more pain than she is already in. The only reason I share this information is 1) because I know people care about Tanner and want to know how she is doing, and 2) because I feel strongly that the only way to end this *&^%$ing disease is for people to know how awful it really is and be moved to give of themselves to help.

I’ll write more when I know more. We are, as usual, blessed by the wonderful people who come running to our aid when we need it, and do not need anything at this point.

Love,
Beth

One Year

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May 30, 2010

One year ago today, at about 5:30 pm, I stood in the Vanderbilt Children’s Hospital ER and asked a young, nervous resident, “Are you trying to tell me my daughter has leukemia?”

When he nodded, solemnly in response, I distinctly remember taking a step back from Tanner’s gurney, so she couldn’t see my face as I fought to comprehend how a sudden backache in the middle of the night could turn out to be leukemia… couldn’t see me crumple in disbelief… couldn’t watch my eyes grow wide in horror as I bent over at the waist and pushed a scream back into my mouth before it could make a telltale sound.

I was alone with Tanner at the ER. John was home with Jake, and my friend Beth, who had come so quickly when I called, was on her way back to our house to trade places with John so he could come to the hospital.

I called John and told him to come quickly, but didn’t tell him why. No one should drive with that kind of news rattling around in his head. When he got there, I took him out into the hallway and told him what the doctor had said and we held each other and cried.

The next two days were a whirlwind of false hopes that it could be something else followed by a deafening silence when the bone marrow biopsy results were definitive. This was it… our daughter had cancer.

It’s hard to believe it’s been a year since that day. It’s trite to say, but it really only seems like yesterday. My memory is now organized by the things that happened before May 30, 2009, and the things that have happened since. They feel strangely like two different lives.

It’s not a day I want to celebrate… this diagnosaversary, as some call it… but it’s too big to let pass without mention and without reflection. It changed our lives, mostly for the worse, but admittedly some for the better. We now know the incredible strength of our daughter and the unending and unexpected kindnesses of those we know and of those we don’t.

Tanner is asleep on the sofa as I write this, having given in to the affects of the high-dose steroids she takes, her new hair curling softly around her peaceful face, her chest rising and falling slowly. I am struck with the fact that she is alive… not just a little, but a lot alive. She is thriving and growing and having fun, despite it all.

She had made it through one year, and she will make it through another and then just 67 more days after that, she will take her last dose of chemo. She will just stop, wherever she is in her monthly chemo cycle, on August 6, 2011. She will be eight years old. And, we will work hard to make all of this a distant memory and to use what we have learned from it to make our lives even better than it could have been BC (before cancer).

One down and one to go. Go get ‘em Baby.

Love,
Beth

Home from the ER

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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.

Love,
Beth

A Big Bump in the Road

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December 21, 2009

Tanner’s ER visit seems to have been the beginning of a virus epidemic at the Page house. So far, John is the only one who has not gotten sick. Tanner’s oncologist thinks we all have adenovirus – sore throat, congestion, irritated eyes, and fever. Tanner actually is much better; she just has a cough at this point. I spent all yesterday in bed with a fever and body aches. Today, I am better, but not yet well. Jake continues to cough and just feel yucky. Everyone’s eyes have been bloodshot and irritated at some point.

We’re taking Tanner in for a chest x-ray tomorrow to be sure she’s not developing pneumonia again. If she’s okay and Jake and I feel better, we still may make it to Atlanta for Christmas Eve. I’m a little behind on my Santa duties, but I think we could do it.

Poor John is taking care of three sick people while trying to work from home as well. Once again, he is the lynchpin that holds us together.

So frustrating to have jumped through so many hoops to get to this point only to have a virus take us all down like this. We just can’t catch a break.

Keep us in your prayers. We’re hoping everyone is better tomorrow.

Love,
Beth

The Struggle

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November 16, 2009 We continued our quest for uncrowded playgrounds today… neighborhood playgrounds are almost never occupied, just in case you ever need to isolate your kid who still feels good enough to play! Today we went to Liberty Downs playground in Brentwood. We had a contract on a house in that neighborhood when Tanner was diagnosed, which we let go, of course. It’s one of my favorite neighborhoods, though. The whole thing feels like a beautiful park.

They have a nice playground next to a beautiful lake and a little stage where they hold neighborhood events. There is lots of space for running and some beautiful trees, so it’s one of our favorite spots. Today, though, it almost proved too much for Tanner.

To get there, you have to park at the top of a hill and go down the grassy slope to the lake and then down another steep hill to the playground. As soon as we got out of the car, Tanner cried out in pain – her left leg. She wanted me to carry her, but I encouraged her to walk, hoping it might work itself out. It was most likely nerve pain, combined with some pretty marked muscle loss from the most recent steroid bout. She limped down the hill with a grimace on her face, but seemed to be moving a little better at the bottom. She began running, which is once again a real struggle for her. She can do it; it just looks very awkward and like she is running against a current that keeps her from getting anywhere very fast. Her legs don’t seem to really cooperate with the will behind them and her head jerks and bobs with the effort of trying to get her body to do this simple thing that she would like to take for granted.

She fell twice while trying to kick the soccer ball. I had to lift her up into and out of a low fork in a tree she would have scaled easily before the leukemia. She struggled mightily, and with typical Tanner resolve, to get up the “rock wall” on the playground that Jake climbed up in seconds. She fell again, dancing on the stage and scraped her ankle. And, finally, when we left, she had the two big hills to face in order to get back to the car.

Normally, I would have given her a piggy back. I’m all for using play as therapy, but she was beat from an hour of hard play and it’s about 125 yards, mostly uphill. But, I had two soccer balls and some coats to carry. So, I put my hand under her upper arm to help support some of her weight up the first hill. She worked so hard. At the top, she stopped, hands on her knees, to rest. She looked back at the hill, panting, and said, “Corinne could just run right up that hill.”

Corinne is Tanner’s best friend and Tanner is right; she could have run right up. She is strong and athletic and full of energy. While I would pit Tanner’s energy against almost any kid, her physical strength has waned to the point that I wonder whether she will ever fully recover from the damage the drugs and the steroids are doing. Her upper legs are so thin, she looks like one of those starving kids in Africa; there’s no muscle there.

She has never fully gained her physical strength back after the first round of steroids back in June. She gained a lot back, mind you, and surprised me with what she was able to do. But, it was never normal. Now, this second round, combined with the 10-day stint in the hospital, has put her almost right back where she was before. I worry what the five-days-a-month of steroids that she will take for the next year and 10 months of Long Term Maintenance will do to her. Theoretically, she has the rest of her childhood to get strong again, but I still wonder what 2 ½ years of not being able to use her body to it’s fullest will do long-term. Not to mention the possibility that the long-term steroid use can cause avascular necrosis, or bone death, which can have a permanent debilitating effect (one of our leukemia friends is dealing with this now).

It’s scary and seems unfair, but I try to remember this: someone (I don’t remember who) told me that they knew someone who had leukemia when they were young and that it was a miracle this person survived at all, because leukemia at that time was a “death sentence.” It’s true. Even just 10 years ago, Tanner’s chances of beating this would have been notably different.

So, I try to ask myself, “If a doctor came to me when Tanner was diagnosed and said, ‘She will die within a month without treatment, but the treatment is very tough and can have some lasting side effects,’ what would we choose?” Of course, we would choose the opportunity for life. If it means she’ll never be a super athlete, it’s still better than the alternative, right?

I’m trying to learn to be more grateful for the treatment. For the chemo, the steroids, the plethora of medicine. It’s so easy to despise, but really, it’s a lifesaver… literally.

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

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