Between a Rock and a Joyous Place

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February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.

Love,
Beth

Counts Update

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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.

Love,
Beth

Hoping for Good Counts

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I did try to crop out the toilet in the background, but couldn't do it!

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.

Love,
Beth

Indoor Fun

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February 14, 2010

Tanner and Jake playing wii

How many ways can you have fun while stuck in your house and no visitors allowed? We’ve tried ‘em all… trust me… but have had lots of help from friends.

Thursday afternoon, our dear friend Anna Lynn, who is forever thinking of us, and is forever creative, brought Jake’s valentines from his class to us. He had missed his valentine’s party (and his Christmas party and his Thanksgiving party). His class made valentines for Tanner, too, so we had a lot of fun opening them. She also brought beautiful yellow tulips (that’s so Anna Lynn), valentines from our church staff and sugar cookies with a cookie decorating kit (from another dear friend). We were opening those valentines when I got a text from Tanner’s home teacher, Mrs. O’Hara saying there was a package on the doorstep. It was an early housewarming gift – pots with gardening gloves, tools, seeds and even dirt. How cute!

Friday, Corinne brought home Tanner’s valentines from her class… she LOVED them! There was one unsigned valentine and she’s still trying to figure out who her secret admirer is (I love this!). I opened the door to find another package from Mrs. Wood’s 4th grade class – they have been so super to Tanner – they sent valentines and birthday cards for Jake. So sweet.

We also had valentine packages from some of John’s co-workers and from all the grandparents. It has really helped alleviate the boredom. These days have been hard on all of us, but Tanner is especially frustrated. She had a small taste of freedom and then it was taken away so quickly. She is definitely feeling it.

We had a breath of fresh air Thursday and Friday from Aunt Beth. Beth is one of my two best friends and has been so unbelievably generous with her time. She is my savior when I need to balance the impossible – a child who can’t leave the house and a necessary task that requires me to leave home. Thursday afternoon, she came so John and I could meet with Tanner’s school. Then, she stayed overnight so I could take Jake first thing Friday morning to his annual kidney ultrasound. Jake was born with one kidney and has to be monitored. His one kidney is stellar! Tanner got to stay with Aunt Beth while Jake and I left for several hours and I think Beth must have been totally pretended out by the time she left!

The meeting with the school went great. They were so awesome and are doing anything and everything they can to make sure Tanner will be as safe as possible when she returns to school. She will have her own bathroom and her own computer to cut down on sharing germs. Together, the group of us that met developed a 504 plan. It is a legal document that spells out Tanner’s limitations, outlines what the school will do to accommodate them, and excuses her from normal absence rules, etc. She’s done so well here at home keeping up with her schoolwork, thanks to Mrs. O’Hara. She continually scores at or above grade level.

Thank God we have this new house to go “visit” when we are bored out of our minds and tired of looking at these same four walls. We go jump in the bouncy house and ride the little train and run around in the empty space to get out our ya yas! John went over there for several hours today to put together Jake’s new Batman battery powered ATV. We’ll give it to him tomorrow on his birthday… he will, to say the least, be beside himself. He loves anything to do with cars and motorcycles and asked to have a motorcycle birthday party. Beth and I painted a mural on the wall of his new bedroom with a road coming through a green hill and clouds in the sky. We’ll use the road as a headboard for his race-car bed and put his airplane shelves in the sky looking like a red plane flying out of the clouds (Thanks, Johnny). It has been a rough road for him, too, and he deserves an awesome room.

We all made valentines for each other today and had fun giving them to each other after dinner. The kids and I decorated the sugar cookies for John, but couldn’t eat them after all the valentines candy.

So, we’re stir crazy, but trying to make lemonade, if you know what I mean. Tomorrow is Jake’s birthday. I am sad that there is no one but us to celebrate his day. Usually, we invite family and maybe a few close friends for cake after dinner. He’s too little to really understand the big party is coming. We’re hoping Tanner’s counts will be high enough on Thursday to come to his party, but if not, will have it anyway. He needs to have his birthday… even Tanner said so.

Three years ago today, I was going to bed right about now, bags packed, knowing that I was getting up to head to the hospital to deliver a baby that threatened to be too big if we waited. Jake beat the doctors to the punch and came on his own that day, without induction. So like him to be accommodating. Eight pounds, 15 ounces of beautiful, long, sweet baby boy. John and I knew Valentine’s Day would be forever spent preparing for his birthday and could care less. He is the best Valentine’s gift we could ever ask for.

Much love,
Beth

Counts Update

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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?

Love,
Beth

Her Beautiful Face

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February 10, 2010

We’re cooped up and feeling it. That’s all I can say about it without whining and I think I’ve had enough whining in the last few days to last me a lifetime! Tanner feels good and we’re going in for counts tomorrow to see if they are at least on their way up. Her oncologist called yesterday to tell us to stop her oral chemo until her counts come up. He felt they might not rise quickly while she was taking the 6-MP so she’s off of it until at least tomorrow.

Those of you who keep up with us on facebook will have likely seen this picture. I posted it the other day. I can’t stop looking at it. There’s something about it that is so powerful for me. I didn’t ask Tanner to pose for this picture. If you know her, it will not surprise you to hear that she inserted herself into a picture I was taking of the floors in our new house. She ran into the room, saw me taking the picture, threw off her coat and jumped right into the center of the picture. Nothing unusual. She’s a ham, alright. But, I was surprised when I got home and loaded the photo onto the computer.

It’s not her pose… that comes straight out of my People magazines that she sees lying around the house. It’s her face. I expected her to be a little silly, a little put on, with a cheesy grin or a comical pout. But, her face is open and honest. She’s staring at the camera with a confidence and an integrity that takes my breath away. Leukemia has stolen many things from my child, but it will not steal this. It will not steal the strength and courage that I see in that straightforward look… in that beautiful face. No hair to hide behind, but she doesn’t need it. She is a force to be reckoned with.

This is not a child who is afraid. She may have fears, but she is not afraid. She expects the best for herself – you can see it in that look. The way she is looking so calmly at the camera. She’s a superhero. She’s a rock star. She’s GI Jane.

I take comfort in this. I look at her in this picture and know that she will be able to handle whatever comes her way. That she will be an extraordinary woman someday when all of this is just a memory. That the same tenacity and persistence that drives me batty as a parent will be the same determination that allows her to succeed against all odds as an adult. She will have learned it the hard way.

Say a prayer for us tomorrow if you think about it. We’re hoping to hear her counts are on the upswing.

Love,
Beth

Not this Week

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February 8, 2010

We’ve been waiting for so many good things to happen. Living right on the edge of happiness. Today, we went to clinic for counts, hoping to hear they were high enough for Tanner to return to school this week. We were flabbergasted to find that her neutraphils were only 130 – the lowest they have ever been since diagnosis. Nurse Carie was so surprised, she ran Tanner’s counts twice to be sure.

Apparently, the doctor said that maybe the virus that caused Tanner’s ear infection caused the low counts and that now they should be able to recover. In the meantime, we were handed a mask along with Tanner’s count sheet and are in seclusion. Jake will again not be able to go to school and we will postpone his birthday party this weekend until next weekend.

Last week, Tanner made a valentine box. A cardboard shoebox wrapped in red paper and decorated with glittery stickers and magic marker hearts. She worked hard on it and, without my even knowing, pulled out a class list and wrote a valentine for each child. Littlest Pet Shop for the girls and Transformers for the boys. She was so excited. This weekend, I bought candy so she could tape it to the cards. She talked about putting all the cards in the boxes for each child and being able to go to the party.

I’ll bring the box with me to a meeting at the school tomorrow and give it to her teacher so she can pass out the valentines for Tanner. Jake will miss his Valentine’s party, too. Just like he missed his Thanksgiving party and his Christmas party. We just can’t afford to have him bring germs home to her when she, essentially, has no immune system.

Needless to say, we are extremely disappointed. Still waiting.

Love,
Beth

On the Mend

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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.

Love,
Beth

A Setback

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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.

Love,
Beth

Snow, Sledding and Steroids

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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?

Love,
Beth