Category Archives: family

Clinic Day #21

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I love this picture of Tanner. I think she looks so at peace with who she is.

I love this picture of Tanner. I think she looks so at peace with who she is.

November 12, 2009 Today was our fastest clinic day ever, which seemed only fair since last week was our longest! Tanner’s counts had dropped, but not terribly. Her neutraphils were down to 900 from 1,100 last Friday, which means she is neutrapenic, but is still so much better than I expected. The chemo takes 7-10 days to drop counts and we started back on the at-home IV ARA-C chemo today, so the doctor warned us that in the next couple of weeks, we should expect to see those counts go down significantly. We will administer the ARA-C at home for the next 3 days and she will continue to take the oral 6-TG until next Friday. The next two weeks, we just go in for counts and to be sure she doesn’t need a transfusion. If her neutraphils are back up to 1,000 at week 3, we will start Long Term Maintenance on Dec. 4. Unbelievable!

The doctor said we will need a couple of months of maintenance under our belts for her to be cleared to return to school. Tanner reminded him that we also couldn’t go back if flu season was bad (she really did!). So, maybe February… that would be such a gift.

After clinic, we went for shrimp scampi at Captain D’s (Have I mentioned her recent obsession with shrimp? It was pizza for a while, now shrimp and I think we might be moving on to chicken noodle soup!) and stopped by John’s office so a few co-workers/friends from out of town could come down and give her a hug. Then, we went to pick up Jake at Aunt Beth’s house. On the way home, she fell asleep in the car and stayed asleep for a while after we got home. She had a playdate with Corinne and Laurel and was tired again at bedtime. Maybe yesterday wore her out!

Anyway, it was a good day and a good clinic visit. Jake continues his cold and I continue to be terrified that Tanner will catch it. Have you ever tried to keep a two-year-old from spreading his germs? Impossible.

Thanks for all the love and support coming our way. We are carried by the love, prayers, good wishes and acts of kindness of friends and family. People never seize to amaze me. Last week, I looked out the window to find my neighbor blowing the leaves off of the front lawn. When he was finished, I went out to thank him and give him a hug. He is a cancer survivor himself and while we embraced he said simply, “I just want to do something to help.” I don’t even know what to say about this and the countless other kindnesses that have come our way. Thank you doesn’t seem like enough.

Love,
Beth

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth

Tired

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November 3, 2009 Tanner doesn’t seem to be bouncing back from this recent bout of pneumonia the way she normally bounces back from things. Normally, she gets more and more energy every day until she seems back to normal – or leukemia normal, at least. But, this time, she just seems about the same every day. She’s still napping every day and still tired at bedtime and she doesn’t really play all that much; she mostly wants to stay on the couch. Now, it’s only been four days since she was in the hospital, so she may be just recovering slowly from a pretty big illness.

Or, it could be the fact that she is on three antibiotics and her body is just trying to deal with that. I suppose it could also just be the effects of the chemo still. Or, last but not least, she could be getting close to needing a transfusion.

Whatever the reason, she’s tired, which is kind of okay since I am, too. So, we dropped Jake off at school today and came home and lay on the couch and watched movies. It was lovely.

Her teacher was supposed to come this afternoon, but Tanner fell asleep in the car on the way home from picking up Jake from school and I didn’t have the heart to wake her. She wouldn’t have been much good to anyone if I had. She slept several hours and still went to bed on time, tired.

Jake had a great time at school today, but told his teacher several times throughout the day that mommy wasn’t coming back. He woke badly from his nap and was sobbing when I got there. Poor thing… he hasn’t known who was coming or going the last couple of weeks.

Friday is Tanner’s long chemo day. I honestly don’t know how they fit everything they are going to do to her into one day. If she needs a transfusion, I imagine it would mess up the whole shebang; a transfusion takes up to four hours. If she still seems super tired tomorrow, I may take her on Thursday to get her counts checked before Friday.

Tanner and I were in the bathroom at church today after dropping Jake off for school and she was wearing her little fanny pack with her antibiotic drip hooked up. She asked how many more days we had to do this and I told her just one more, but then starting Friday, we have to do five days of IV chemo at home. She said, “We have to take chemo every day?” I nodded and said, “I’m afraid so, sweetie.” She seemed to think about it and then replied in a very adult voice, “I’m gonna feel really crappy.” I told her she was welcome to use any word she wanted to describe it; she’d earned the right.

Tanner’s right… she’s going to feel really “crappy.” And, we’re going to feel crappy watching her suffer. And, Jake is going to feel sidelined and confused by everybody’s crappiness and Tanner’s irritability. Let’s face it, cancer sucks. But, it’s four more weeks of this particular brand of chemo hell, and we can make it. The Pages are strong like that.

Love,
Beth

Calling Nurse Page…

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November 2, 2009 When John and Tanner came home from the hospital Saturday, they had a lot of stuff with them. We had been in the hospital 9 days and had accumulated a lot of things that John kept unloading from the car and bringing into the house. After 3 or 4 trips, he brought in two big cardboard boxes and set them on the kitchen table.

“What the heck is that?” I said, expecting it to be a gift of some kind for Tanner. He opened them up to show me all medical supplies necessary to administer the IV antibiotics to Tanner for the next four days. Yikes! John laughed and said, “I say we just take her back to the hospital and say we made a mistake… we want to stay.”

Ironically, that was an option. We could either stay four more days or learn how to administer the antibiotics. Seemed like a no-brainer to me until I saw those boxes. Fortunately, John had taken a video of the pharmacists’ explanation of how to use the supplies and I had asked the nurse to show me how to flush her line while we were at the hospital. There were also written instructions. How hard could it be?

It isn’t actually all that hard, just kind of unnerving considering the reason she is getting the IV antibiotics in the first place is because she had some staph bacteria in her line. So, slightly nervous, John and I glove up, read the directions through several times and go at it. It went really well, I thought, until I came back ½ hour later and no antibiotic had drained from the ball. That’s when I realized I hadn’t unclamped the line to the antibiotic… oops!

Since then, I’ve become a pro, even by flashlight at 2 am. I’m pretty fast and quite confident now, which is good, because I have to do it four times a day. I’ll have flushed her line 32 times, hooked up the antibiotic and administered heparin 16 times by the end. I sterilize the cap on her line, flush with saline, bleed the air from the antibiotic line, hook them together and unclamp everything to begin the drip. Then, I reset my alarm for an hour later, wake up, unhook her, flush and administer heparin to keep her line from clotting.

It’s an amazing contraption that allows us to deliver IV antibiotics at home pretty simply. No pole, no infusion machine… just a little balloon filled with liquid antibiotic that, once screwed into her line and unclamped, drips out of the balloon and down the line into her port much like a water balloon would drip out if you put a pinhole in it. So clever. She even has a little fanny pack she can put it so she can carry it with her if she wants to get up and play.

So, it’s been going very smoothly… until this morning when the needle came half out of Tanner’s port. John woke me up and I could hear Tanner crying and yelling. Nothing to do but pull it out the rest of the way and go to the clinic to have it accessed again. Tanner and I took Jake, which was fun because she got to show him the ropes and he got to meet the ever-famous Nurse Cari.

One of the nice things about this whole thing is that I get to do something for John. The whole thing makes him a bit squeamish. It’s not just the fact that you have to draw back blood to make sure the port is working, I think it’s also the thought that he might hurt her if he makes a mistake. At any rate, it makes him uncomfortable and I just told him not to worry about it; I didn’t want him to have to do it. So the miracle is that he has let me do this for him; he doesn’t often stop helping me enough to let me help him. I’m glad.

So, two more days of IV antibiotics, then a long day of lots of chemo on Friday that begins five days of IV chemo administered at home. We’re ready.

Love,
Beth

Happy Halloween!

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Tanner as Wednesday Addams

Tanner as Wednesday Addams

October 31, 2009 Did you hear about the parents who let their child go trick-or-treating on a cold night after just getting out of the hospital for a nine-day stay for pneumonia?!!! Oh, and she has leukemia, too!

It sounds so bad on paper, but it was really fun. If there is one thing I have learned from this whole experience it’s that you have to grab your moments when they present themselves for you never know when they will be taken from you. Apparently children know this piece of wisdom without being taught. Tanner seized the moment, for sure, tonight.

Tanner and John got home from the hospital today around 1:30 with chick-fil-a for everyone. We ate, Tanner’s stomach started to hurt from one of the antibiotics she is on, John and I spent 20 minutes trying to be sure we were administering her IV antibiotic correctly and she promptly fell asleep for several hours. That’s when the adults decided that caution would be prudent. That she might just be too tired to go out for Halloween tonight. That maybe we should do it the next night with a good night’s rest under our belt and one more day for her to recover. So, John runs all around the neighborhood asking the neighbors to save some candy for trick-or-treat on Sunday night. People were so sweet and willing to help.

Then, Tanner wakes up. No way was she trick-or-treating the night after Halloween! We warned her that the doctor said she had to wear a mask… that did not dissuade her at all. So we hustled up, ate some dinner, hurried into our costumes and met Tanner’s friend Olivia and her Mom, Jennifer, for some power trick-or-treating.

Jake, Olivia and Tanner

Jake, Olivia and Tanner

We brought the wagon because we didn’t think she would last long. She’s been in bed for 2 weeks, after all. But, as always, she surprised us with her determination. She probably made it to 15 or 20 houses before climbing the steps became too much for her and she started just stopping on the sidewalk and letting me go to the door to collect her candy. She eventually got into the wagon with a blanket around her and rode the rest of the way in great spirits.

I can just hear myself trying to explain our parenting skills to the doctors when she shows up with pneumonia again from being out in the cold (just kidding, they told us she could go). But, it was one of those moments where I realize that the stubbornness in her that has long driven me crazy as a parent is starting to serve her well. What had been just strong-willed obstinence as a toddler and preschooler is morphing into tenacity and perseverance as a kid. I was so proud of her.

IMG_1245She and Jake and Olivia had a ball. They looked so cute and got a LOT of candy. When we got home, Tanner said it had been one of her favorite Halloweens. She said, “This was a great night.”

I guess having so many things taken from you makes you really appreciate the things you get… or, in Tanner’s case, the things you reach out and grab with sheer determination and grit.

Happy Halloween!
Love,
Beth

P.S. If you see Jake, do NOT tell him he was a cute fireman. He was Billy Blaze from the Rescue Heroes, thank you very much!

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

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

Settled In

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October 22, 2009 We’re settled into the LAST room available at Vanderbilt Children’s Hospital. Lights are out, Tanner is sleeping and no one is supposed to bother us for the next two hours. Admitting went so smoothly… usually on the night we admit, she never gets to bed before 10 pm, but they got all the admitting done quickly and she fell asleep at 7:30, right on time.

She felt so lousy earlier today, but perked up quite a bit after a dose of morphine. Now, it’s worn off again and she is feeling tired and bad. However, she did resolve the constipation issue before bedtime… nuff said about that.

We’ll be here for at least two days. We have to wait for all the test results to come back, which will take 48 hours, and they will want to see her counts come up some before they will let her go home. We can’t have any visitors; too risky. And, no fresh flowers when her counts are this low.

So much of her hair has fallen out today that she now has large bald patches. I doubt there will be anything left even after tomorrow. I can’t tell you what it feels like to keep having to comb out the dead hair that mats into the remaining hair. I filled a small trashcan up today once we got in the room. It’s rips me apart every time I have to do it. It’s like with each stroke of the hair filled comb, I hear a voice saying, “She has cancer. My baby has cancer.” I keep telling myself that it’s just hair and it will grow back, but it isn’t just hair. It’s the one thing that has kept me from being constantly, visually reminded that my child has cancer. Once she is bald, I won’t just know it, I’ll look at it every moment of every day.

After I combed so much hair off of her today, she put her hand to the back of her head and said, in a little panicked voice, “Mom, feel my head. You can feel it.” I told her that I didn’t think it would last more than a few days and I thought it was all going to come out. She asked if I would bring her wigs to the hospital tomorrow and I said I would. She said she was scared that kids would make fun of her and I told her I didn’t think they would; that her friends knew it would fall out and that their Moms will tell them before they see her so they won’t be surprised.

It’s oddly peaceful here in the hospital at night. Sure, you get interrupted by nurses taking vitals and noises in the hall, but that’s all become so familiar to us, that’s it’s comforting in a strange way. Here, I know she is the safest she can be. It’s certainly not 100% safe; most kids that die from leukemia die in the hospital. But, this is where doctors have the best chance of catching something early and this is where everyone she encounters wears a mask and gloves. It makes me feel better for her to be here when her immune system is so low.

The Children’s Hospital is wonderful; the most comfortable hospital I’ve ever been in. I sleep on a sofa that pulls out to a comfortable twin-sized bed; even John’s long body fits on this thing. The nurses are kind and very quiet, for the most part. The food is good with a huge menu you can order from. Tanner can get videos, games, crafts and all manner of fun things delivered to her room. We can’t leave the room to play in the playroom or go outside because of her counts, but they will bring us almost anything we want. They are kind and compassionate people, despite the fact that they see sick kids every day, and they recognize that a sick kid means a “sick” family and take care of parents’ needs as well.

Tonight, I will hear the lifeflight helicopter land on the roof more times than I care to think about. I can’t hear it without being reminded of Tanner’s time in the helicopter and I pray fervently for the child in it and the family who cannot fly with him or her and the pain I know they are going through not knowing what is happening to their child while in the air. I know it was the longest 25 minutes of my life when Tanner was on that helicopter. We knew she was in the hands of some of the most highly trained trauma physicians in the world, but it is still horrible not to be there. Thankfully, Tanner doesn’t remember it and I pray that no child does.

We’re lucky to have such resources so close by.

John has delivered us our necessities and my Mom has arrived to take care of Jake tomorrow so John can go to work. We’re tucked in and comfortable and I’m getting ready to watch last night’s espisode of Glee on my computer (Aren’t computers amazing?). I’m less terrified than I was earlier today when we first got here, so I think I’ll sleep tonight and I think Tanner will too.

Love,
Beth

The Freaky World of Cancer

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mommy in maskOctober 19, 2009 Yes, it’s me in the mask. Fuzzy picture taken by Tanner, from whom I am trying to keep my throat infection germs. I tested negative for strep, but have some kind of throat thing and the doctor mercifully gave me antibiotics to try to make it go away fast before I give it to Tanner. Hence, the mask. Attractive, no?

The last two infections I have had, Tanner has also picked up. Whether we got it together or she caught it from me I don’t know, but I do know I need to stay away from her until these antibiotics have a chance to work.

As usual, my best friend, Beth, rescued me. She stayed with the kids for many hours today while I tried three different clinics and two different pharmacies to get what I needed. I literally don’t know what I would do without her. My Mom and John’s Mom are lifesavers and so willing to help, but they live 2 and 3 hours away. Beth is always there when I need her. She is family, and my kids couldn’t be any more her niece and nephew if we were related by blood.

Which brings to my point of this post, which is to acknowledge that, in order to survive something like this, you have to let go of your independence and your assertion that you can handle things without any help from anyone else. You can’t… trust me. You need help, and plenty of it. It takes a village to see a child through cancer, especially the kind that lasts 2 ½ years. I know I may not always accept help as gracefully as I should, but please know that it doesn’t mean I don’t appreciate it. I do… believe me. I just don’t want to need it. I think it is part of my desire to have a normal life where I didn’t need people to take care of my kids for days at a time, cook me meals, fold my laundry, etc. I want to do it all myself, but thank God for those of you who realize I can’t and do it anyway. I love you… really.

Tanner is still feeling pretty rotten. Every day she takes the steroids, she retreats a little further into herself and gets a little more limp. She lies on the sofa and watches TV or plays on her computer. If you turn off the TV, she will just lie there and stare into space or doze off. She asked John to take her to bed at 6:30 tonight, but will have trouble sleeping. Last night, she woke up 3 or 4 times, once at 3 am for some “cheesy snacks!” Thank goodness we have the prior experience with the steroids and know this is normal and will go away within several days of stopping. She only has two more days of the steroids, so I think she’ll start coming out of it Friday or Saturday. Then, she is done with steroids until she starts long-term maintenance in a month or so. But, they are a very important part of leukemia treatment and she will take them the first five days of every month for the remaining year-and-a-half of maintenance.

So, we’ll just keep renting movies and letting her lay on the sofa until they start wearing off.

I’m off to bed, hoping the antibiotics will work their magic overnight and I will feel better tomorrow.

Love,
Beth

An Ode to Steroids

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October 14, 2009

Oh steroids, how I hate thee
The way you make my daughter acteth like a monster
The dozen of meals I make a day because of you
Make me hate thee all the more.
The kicking, the screaming, the tantrums you cause
You are like an eclipse on the darkest of days
How I hate thee,
Let me count the ways.

Apparently 7 days off of steroids just isn’t enough for them to fully leave Tanner’s system, so now day 2 of this pulse of steroids is really just a continuation of the last pulse… day 9, if you will… which is when all the fun really begins.

Poor Jake said to me today, “Mom, she cares me,” which in Jake-speak means, “She scares me.” He just didn’t know what to do… she would call him into her room to play and then 10 seconds later, scream at him to get out and leave her alone.

On the plus side, she did make efforts to calm herself. She went to her room several times and got under the kitchen table once to try to get hold of herself. By bedtime, she was just a cranky, pitiful whiny mess. John carried her to bed and she lay with her back to him while he sat on the floor and read her a story.

Five more days… we can make it.

She is ravenous, as usual when on steroids, and I am frankly hopeful that she will gain some weight over this week. Her legs have gotten painfully thin and a little buffer to get us through the next 5 weeks of DI would be great.

Yesterday, she ate a corn dog, French fries and a slush at 9:30 am on the way to clinic after having 2 big bowls of cheerios for breakfast. Then, at 12:30 on the way home from clinic she ate another corn dog, tater tots and milk. The nausea then set in and she stopped eating until dinner. Today at lunch, she ate 2 bagels with cream cheese, two gogurts and two helpings of pineapple, got up and cried that her stomach hurt from eating too much. Then, five minutes later, said she felt better and wanted chex mix. I made her wait 15 minutes (really only 10 because I couldn’t take any more whining). Twenty minutes after the chex mix, I came down from putting Jake down for his nap and heard her in the fridge. She was pouring herself a glass of milk and had a cup of goldfish, which she refilled twice over the next hour. I think she is probably about a day away from all-night eating. Insane.

It is a little painful to see her “argue” with herself over the food. She knows that if she eats too much her stomach will hurt, but she is so compelled by the steroids to eat that she literally talks to herself about it. “I’m just going to wait a little bit before I eat this… yes… I’m afraid my tummy will hurt… but maybe just a few minutes, cause I’m really hungry… I really want it… maybe just a few more minutes, etc., etc.”

She takes Dexamethasone, which is 4 times as powerful as prednisone, if you have ever taken that for anything. I have taken the prednisone,and by night 2, do not sleep at all. So far, she is sleeping, but I suspect that will change in the next night or so.

Meanwhile, we’re trying to be patient without letting her get away with murder. She knows that they are making her act bad and she seems very sorry about it and is trying to control it as best as a six-year-old can.

Did I mention it’s just five more days?

Love,
Beth