Steroids and Playdates

February 27, 2010

Our new-found freedom has been a little limited by the fact that Jake was sick and I didn’t want to share his germs with anyone else and Tanner being on steroids again.

Jake’s fever broke sometime in the night on Thursday and he is feeling better, though still coughing. Tanner is coughing some and complaining of a sore throat, but it’s difficult to tell what is the steroids and what is her actually not feeling well. She’s handling the steroids very well. She’s been tired (took a 2-hour nap on Friday) and asked to go to bed at 6:30 tonight. That’s pretty typical of steroid week, though.

Although we’ve got this new freedom, we have our eye on the prize and are still being somewhat cautious. School in two weeks, if her counts can stay up. There’s not really anything you can do to affect counts, but getting sick certainly doesn’t help. So, I’m carefully controlling who she sees so we can try to make it the next two weeks without catching anything. She seems more susceptible to getting sick during steroid week – or at least that’s my non-medical opinion.

The kids went to Aunt Beth and Uncle Glenn’s this morning to play and give John and I a chance to get some things done at the new house. Awesome! They had a great time, as always, but Tanner had fallen asleep on the couch while watching a movie and we had to wake her to go home. She rested when we got home and had a much-anticipated playdate with Corinne this afternoon. She was wiped out by 6:30 and ready for bed.

John and I got to spend some time cleaning the construction dust out of the new house and putting together some shelves we bought for the kids’ rooms. The renovations are going well and on target for us to move in two weeks… yikes! So, I suspect we will do lots of packing tomorrow!


On the Mend

February 4, 2010

Tanner finally is feeling better today. After having spent the last two days pretty much in bed, she got up today and played. The antibiotic that she is on for the ear infection has been pretty rough on her stomach and she still isn’t sleeping well (steroids cause sleeplessness), so we’re all a little tired, but she isn’t coughing as much and had more energy today to play.

We bought valentines today for her class and decorated a valentine box in anticipation of being in school that week (I hope, I hope, I hope). We’ve laid low this week and hope that on Monday we find her counts are up enough to go back to school next week.

Speaking of school, those wonderful kids at Moore Elementary raised more than twice their goal in the Pennies for Patients campaign. They raised $2,042 to help fight leukemia and lymphoma. Amazing! On Monday night, the school board is presenting an award to the school and to another in the district that also did a campaign for a child with cancer there. The principal has asked Tanner to come to the meeting with her to help receive the award. I hope her counts allow it.

She was on the news last week; a story about the campaign. They want to do a follow-up when Tanner returns to school and a local newspaper wants to do the same. Very cool. Tanner will just hate that attention (wink, wink).

We’re in a bit of a rut. I think we’re all waiting for something to happen. I find us watching too much television and playing too much wii these days. I really hope she can go to school next week – she really needs a change of scenery, interaction with other kids and a challenge for that quick brain of hers. And, Jake and I could do some things that he has missed over the past 9 months – the library, his gym class, playgroup, etc. He needs to have more friends his age – boys, preferably. So, I’m looking forward to being able to focus on him a little. He’s turning 3 this month and we’ve planned a fun birthday party at our new house and bought him a much bigger present than we usually buy for the kids. He deserves to be in the spotlight for a day.

We’re hoping to be able to go visit our potential new dog this weekend… in prison! He is part of a prison dog-training program that pairs dogs destined for euthanization and prisoners in a intense three-month training program that teaches prisoners job skills and responsibility and gives the dogs a second chance at life. We hope to end up with a nice, trained dog to complete our family. A dog to take Millie’s place at the end of Tanner’s bed and calm the fears that a six-year-old shouldn’t have. A dog to motivate me to get up and walk in the morning to have some me-time and get some much needed exercise. A dog for Jake to lay on and throw a ball for. A dog to keep John company when he falls asleep on the couch. We can’t wait.

Waiting for lots of good things to happen. Impatient for them to get here.


A Setback

February 2, 2010

I spent most of yesterday trying to convince myself that my glass is half full. It is. I know it is. But, there are times when it is harder to remember than others.

Lurking in the recesses of our recent good news about school was a cold Tanner was fighting. Yesterday morning, she woke up with her ear hurting. Rather than drive all the way to the hospital, I ran by the pediatrician’s office. They were awesome. They took us right back so we didn’t have to wait in the germy lobby and, of course, Tanner had an ear infection. They have been a long-standing problem for Tanner.

Our pediatrician called our oncologist, Dr. Mixan, who said he wanted Tanner to have a Rocefin shot in addition to oral antibiotics. Rocefin is a broad-range antibiotic that Tanner typically gets through her port any time we go to the hospital with a fever. “A shot?” I repeated. “What kind of s-h-o-t are we talking about here?” Not pleasant, she said. Tanner has a huge issue with shots, but has no problem getting a big needle put into her port in her chest (go figure) so we decided to go to clinic and get the antibiotic via her port. It took longer, but saved us a lot of trauma, screaming and holding her down.

It was a good thing we went. Her counts had dropped across the board. Her neutraphils dropped to 960 from 3300. Which, of course, means back on the restricted diet and no school until they go back up. Tanner cried. She had wanted a salad for lunch so badly. They did a chest x-ray, which we never heard any results on so I assume it was negative.

It’s hard for good news to be so fleeting. For the celebration to constantly be in so much jeopardy. I found myself wishing we had not made such a big deal about going back to school or about being able to eat whatever she wants. Less disappointment that way.

I think my disappointment must have been very visible. Tanner’s nurse, Cari, said gently, “It’s just an ear infection, Beth. She’ll get over it quickly.” And, she’s right. It could be so much worse. I had a pep talk with myself in the car on the way home. This is a long journey and I had no right to expect it to be smooth at this point. I can’t allow myself to be tired when there is so far to go. If I expect Tanner to keep fighting, I have to keep fighting.

So, it took all day (and I mean ALL day) to get to see the glass half full. It is. She’s alive and that, alone, is everything to be thankful for. But, more than that, we have joy. Even if it is fleeting, it is worth having. Living to avoid disappointment is not living at all and that would be a disservice to the fight that she is fighting.

She is not feeling real great this morning. It’s the last day of steroids (hurray) and that’s never a real great day for her. Add the ear infection and she is pretty miserable. We’ll lay low and, hopefully, wait for another celebration to come.


Snow, Sledding and Steroids

January 27, 2010

I moved to Nashville in 1994 from Philadelphia, where, as you can imagine, it snowed quite a bit. In the nearly 16 years since, this is the most snow I have seen! We got a whopping 4-5 inches of snow, which is just enough to have an awesome time sledding.

John’s Mom, Ann, came on Thursday and had a special afternoon with Tanner after clinic. Friday morning, I left the kids in her capable hands and ran out at 8 am to:
1. search for a sled (I knew it wasn’t going to happen, but I couldn’t live with myself if I didn’t try)
2. search for waterproof gloves for both kids
3. search for snow boots for Jake
4. Finally join the snow panic and ransack what was left of the stock at the grocery store so we could “hunker down” for the weekend

I would love to say that after three hours and eight stores, I was successful, but the only thing I came home with was food. No sleds, boots or warm gloves within 100 miles. Retailers must pray for snow in Tennessee.

So, later that day, in the sleet and snow (aka “wintry mix”) Tanner insisted on going out to meet some friends in the school field. We bundled up and I put three pairs of crappy gloves in my pocket so I could replenish her gloves when they got wet. It was in the 20’s and very, very cold and windy.

The kids played for 15 or 20 minutes with me replacing Tanner’s knit gloves every time they got wet. My hands were cold in ski gloves so I couldn’t imagine how she was standing it. But, after we went through all three pairs, she had a melt down and I had to give her my gloves and carry her all the way home and put her in a hot bath.

That’s the way it goes with Tanner these days. She plays so hard and with such enthusiasm, but it usually ends rapidly when she tires out. She is on steroids this week, which exacerbates her fatigue. She lives life in bursts… a burst of energy… a burst of exhaustion. I worry about how she will do at school. But, I try to remind myself that some school is better than no school and we’ll just let her do what she can.

The day after the big snow, we all went sledding with some neighbors and had such a good time. It was Jake’s first time and he LOVED it. I still have my old Radio Flyer sled from childhood and we took that and then shared our neighbors’ plastic sleds. Usually, the runner sled won’t work here, but we had freezing rain on top of the snow and, after waxing up the runners, it flew! I didn’t take my camera, but two of our friends had brand new fancy cameras and took lots of pics, so I’m sure they will send me some I can post (hint, hint Ashley and Molly).

We have two more days of steroids. She has handled them pretty well so far; some crying and fatigue, but she’s powered through a lot of it. We give her a lot of grace and hugs, remind her that it’s the steroids that make her feel this way and let her rest and watch more TV than normal. When she’s had enough, she asks to go to her room alone and watch movies on her computer in bed. We’re learning how to find a workable balance during this week. We’ll have 19 more steroid weeks, so it’s important we figure out the best way to get through the week without letting it totally halt our lives.

If school ever reopens this week (it’s already cancelled for tomorrow), I’m supposed to meet with a group of folks over there so we can come up with a plan for Tanner to attend school safely. She will need some special concessions, obviously, and we will all pow wow to figure out how to best meet those needs and how to protect her from germs as much as possible. The school has been so super and I know they will do everything they can to help.

The new house renovations are going really well. It looks like a house again instead of a demolition zone. Carpet and tile this week. Finishing hardwoods next. Then, finally, the long-awaited kitchen redo. If all goes as planned, we’ll move mid-March. Then, an empty house to sell. Hmmmm.

Anybody want to buy a house in historic Franklin, TN?


Clinic Day #27

January 28, 2010

Apparently Tanner will be going back to school!!!!!! Hoooooooooorayyyyyyyyy!!!!! We’ll meet with the school next week to iron out any special considerations she will need, let her get over the steroids she started taking today, and start her out on Monday, February 8th. Unbelievable. Really unbelievable.

Clinic obviously went well today, although very long. Her counts were actually quite high… too high. They were 3,300. They should be between 1,000 and 2,000, but the doctor said he wanted to see how she did this next month before he would raise it. Whew! Weird to be hoping for lower counts, but we are. I’ll take the high counts for now, though. It means her immune system will be that much stronger to fight off the school germs.

They also removed all of her eating restrictions. Tanner was almost as excited about that as she was about school. She started yelling out all the things she wanted to eat, “Salad? Grapes? Strawberries! I want strawberries!!!” It was so cute.

After all that excitement, we sat… and sat… and sat… in a very full infusion room waiting for chemo. After an hour or more, the nurse came out to tell us they had misplaced Tanner’s chemo roadmap and they couldn’t order her chemo without it. “An actual physical piece of paper? There’s no electronic file with her two-and-a-half year roadmap in it?” Apparently not. They finally found it behind the filing cabinet and ordered her chemo. More waiting… and waiting. We finally left four hours after we got there; two-and-a-half hours of which was spent waiting for a chemo push that took all of 3 minutes once it got there. You never know with clinic.

Tanner left clinic with her grandmother and they went to see Alvin and the Chipmunks. Then, home for some wii with Jake, dinner and the Make A Wish Interview.

She decided she wanted her wish to be Disney World (secret applause). We looked at Disney World and Disney Land yesterday on the Internet and she saw how much better Disney World was and decided to head to Florida instead of California. I swear I didn’t sway her (well, maybe just a little); I just pointed out that if she wanted to meet the stars of a Disney show, we could probably go to Disneyland as well. She wanted to see it online, then we clicked over to Disney World (that might be the part where I swayed her) and saw some awesome videos of the different parks. iCarly apparently cannot compete with the Magic Kingdom, Typhoon Lagoon and Animal Kingdom. Not to mention that you get to stay in the Give Kids the World village, which is just for wish kids. It has ice cream all day, Christmas every week, present fairies that leave presents under your pillow every night, and a Mayor that’s a rabbit. Seriously. I’m so excited because this is something for Jake, too. Although no one has gone through what Tanner has, Jake is affected by all this and deserves something special.

So, it was a long, but very special, day. I’m going to bed to dream about sending my daughter off to her first day back to school.


Big Things

January 26, 2010

We spent Saturday night at one of our favorite places with some of our favorite people. We went to the circus!!! I LOVE the circus. I would go if I didn’t have kids and so would John. I had put it on our calendar a month or more before, but was struggling with whether it was safe to take Tanner into that crowd of people. It’s one thing to be at a restaurant with other people in the next booth, it’s another to sit with people who may or may not be healthy on all sides of you.

John’s company, Franklin American Mortgage Company, made the decision easy. They gave us their suite so we could go without worry and invite friends, too. We had an awesome time with two other families. It’s a big thing for Tanner to be able to do something like this… and Jake, too. We realized at the Circus that Jake has experienced a lot less than Tanner at the same age because he’s been sheltered due to our situation. He was super excited!!! We all laughed at him because he just kept jumping up and down and screaming at random moments because he was so happy.

Thursday night will be another big night. Two representatives from Make a Wish are coming to interview Tanner about her wish. She is so excited, but very conflicted. She really thought she wanted to go to Disney World, but now wants to maybe meet the cast of one of her favorite TV shows and ask to be in an episode. Decisions, decisions. I was hoping for Disney, but whatever she wants will be fine. I just want it to be special for her. It will be interesting to see what she comes up with.

And, Thursday morning is clinic day. It has, unbelievably, been a month since we have been to the hospital. Surreal. She will get a dose of Vincristine in her port and see the doctor. She also starts her monthly five-day steroid pulse.

We are hoping her counts have remained between 1,000 and 2,000 so that they don’t raise her chemo levels. No more chemo, please. Also, if her counts have remained steady, maybe they will clear her to go back to school.

John’s Mom, Ann, is coming with us to clinic on Thursday and then taking Tanner to the movies afterwards. They are going to spend the day together. Tanner is super excited.

Tanner continues to feel really good most of the time. She has periodic nausea and body pains and fatigues more easily than normal, but mostly seems like any six-year-old. Still, the chemo is there. She got sick yesterday morning for no apparent reason that I could figure except the chemo. Weird since Tanner only got sick twice during all the chemo she has received. But, a reminder that even in maintenance, the chemo is still there, still poisonous, still eating at her.

Still, I’ll take maintenance over the past six months any day. The freedom that it brings, the ability for Tanner to regain strength and stamina. The possibility of school and friends.

Big Things… Good Things… Hopeful Things.


Two Doors Down

January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.


My Monthly Steroid Rant

December 4, 2010

I wonder if a month will ever go by where I do not complain about steroids? I feel for those of you who read this blog; you must be saying to yourself, “Enough about those stupid steroids, how bad could they really be?” That’s probably what I would say if this were someone else’s blog and I were reading it.

But, I write here about what I know and about our daily life and I would be ignoring the elephant in the room if I didn’t say, once again, how much I hate steroids.

I came out of the bedroom this morning to my early birds, John and Tanner. Tanner makes fun of my “morning face” – eyes scrunched up against the light, shuffling walk, scowl. She and John spring out of bed at the crack of dawn each day, chipper and ready to go. But, this morning, I came out and Tanner said nothing. She didn’t even look up when I said good morning. When I made a spot for myself in the nest of blankets on the sofa, she just crawled silently into my lap and cried a little. Steroids. They’re back.

She did rally mid-morning and wanted to go to Target. She and Jake got Target gift cards from “Uncle” Larry and wanted to go spend them. Tanner wanted to use hers to buy a doll for her best friend Corinne who, unlike Tanner, did not ask for an American Doll for Christmas. Tanner wanted Corinne to be able to play dolls with her and was prepared to spend the entire amount on a doll for Corinne. When we got there, the dolls were on sale and she was able to buy herself something, too. As Corinne’s mom said, “She was being rewarded for her generous heart.” She’s so excited about giving the doll to Corinne.

Before we left the store, Tanner started not feeling well again. When we got home, she started to get out of the car and screamed in pain. Her leg was hurting from the steroids or the Vincristine – hard to tell which. I carried her into the house while she cried and said over and over again, “It hurts, it hurts, it hurts.” I put her on the sofa and went to the car to get our purchases when I heard a loud scream from inside the house – the kind that says someone is really hurt. I ran in and found her curled up on the hardwood floor, screaming. She had tried to go to the bathroom and fell on the way. Damn. I want to hold her and tell her it will go away, but I would be lying. We have to take the steroids for two more days, so it will likely get worse. So, I scoop her up carefully and take her to bathroom so she doesn’t have to walk and then I get her a dose of painkiller and tell her I hope it will help.

She spent most of the day in her room in bed watching TV. She just didn’t feel good. And, she won’t feel good again tomorrow. I told her I would take her to see Princess and the Frog after we dropped Jake off at school and she said, “I don’t think I’ll feel like it.”

We will repeat this cycle every month for another year and eight months. She will know that the pain and exhaustion will come back. She asked me today if she could use the “H” word to talk about steroids. I told her to let ‘er rip. “I hate steroids,” she screamed.

Throughout the day I would hear her get up and make her way slowly down the hall to the bathroom, wincing, crying out when it hurt particularly badly to walk. I would climb the stairs and scoop her up silently and carry her down the hall and wait for her so I could carry her back. There really isn’t anything I can say to make it better.

Recently, she asked me why the doctors made a medicine that made her feel so bad. “Why would they make chemo if it makes me so sick?” she said. The only answer to that question doesn’t seem appropriate for a six-year-old, but unfortunately, none of this is appropriate for a six-year-old. I told her that a long time ago, before they had chemo, people died from leukemia, so when they discovered chemo and realized that it could “fix” leukemia, people were happy to take it. They were happy to know that they would live. So, even though it makes people feel bad to take it, we should be thankful there is chemo at all. I tried to avoid the obvious, but as usual, nothing gets by Tanner. She said, very matter of factly, “Taking chemo is better than dying.”

So, I will probably continue to gripe monthly about these damn steroids. “Better than dying” just shouldn’t be good enough. I want to be grateful to these drugs, but oh, it is hard these five days of the month.

I know she will feel better in a few days, but it’s still so painful to watch her hurt and know we signed her up for it. Know that I administer the pill that makes her so sick.