Monthly Archives: February 2010

Steroids and Playdates

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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!

Love,
Beth

Clinic Day #28

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Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth

We Need a Break

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February 24, 2010

Tomorrow is Tanner’s clinic visit. She will get an IV dose of Vincristine, have a spinal tap with methotrexate and, of course, get counts. I had this hope that she would be high enough that she could at least go into school tomorrow for her class photo. I don’t want her to look at her yearbook and see her whole class there without her. I’m not saying I thought it would really happen, but I hoped it might.

This morning, Tanner has come down with the cough that Jake showed up with yesterday. Of course. It might be fine. Her counts might be high enough for her to fight it off; she’s done it before. Or, it might not be fine. Her counts might take a nose dive again, she might get a fever and have to go to the hospital for antibiotics, she might get pneumonia and become an inpatient. Count on nothing when leukemia is involved.

And, that’s just it. Count on nothing. Hope for nothing. Only I can’t help it. I hope. I just do. I try not to. I tell myself it will end in disappointment. I have learned not to share my hope with Tanner so she is not disappointed too. But, I can’t seem to live expecting the worst. It’s too bleak.

So, I think I’ll be disappointed again tomorrow. I think I will probably not hear that she can go have her picture made with her class. She will not know to be disappointed now, but she will be later when she sees the class photo she is not in.

As one of my cancer mom friends said recently, long-term maintenance is better, but it still stinks. Amen.

Love,
Beth

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