Category Archives: family

Don’t Let the Bedbugs Bite

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August 24, 2009 We’re praying for restful sleep tonight for Tanner. She has not slept well for the past four nights or so and it seems to be catching up to her. She keeps waking up, agitated, crying, freezing, burning up, etc. She can’t tell you what’s wrong; she’s usually half asleep and won’t talk to me at all. You would think she has a fever, but she doesn’t. I can’t help but think it’s her body reacting to the poison that is chemo. So, tonight, although I’m not sure it’s the kosher thing to do, we’ve decided to give her painkiller if she wakes up. I think, at this point, sleep is the most important thing.

She has had a cough, but no fever, the last two days. We’re hoping that her immune system will continue to fight off whatever this cough is and we won’t end up in the hospital again.

Having said that, she still feels so much better than we ever though she would at this stage of the game. She is able to do so much more and has so much more energy than we ever dreamed she would. We saw some friends this morning at Pinkerton Park who commented on how great she looks and seems to feel. We are blessed that she has kept her hair thus far and has not had low red blood counts, which cause fatigue, headaches and shortness of breath. The low white counts don’t make her feel bad, just make her susceptible to infection.

Tomorrow is Jake’s open house for preschool. We’ll meet his teacher for the first time and have a chance to explain to the other parents the importance of keeping us informed about any illnesses Jake may be exposed to and bring home to Tanner. If this season turns out to be the crazy flu season everyone expects it to be, we may have to pull Jake out of school temporarily to minimize her exposure. Hopefully, not, though. The little man loves him some school!

Tanner will go to the neighbor’s house tomorrow to play with Corinne’s sister, Laurel. She loves to “Mommy” her. Thursday, Jake starts school for real and Tanner and I will head back to the clinic to try again with the methotrexate, as long as her counts are high enough. Hopefully, they are. As much as you would like to avoid the chemo, it’s obviously important that she gets it. She will receive this chemo again by mouth for 2 years of long term maintenance, so being ultra sensitive to it could be a problem.

We’re still riding bikes, still having picnics, still playing on the playgrounds, still swimming, still learning, still laughing and still living life. We’re not having bad days too often any more, just some bad moments among good days. It’s a different life, but still a really great one.

Love,
Beth

School Days

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August 18, 2009 Well, it finally happened. The “good counts” bubble we were living in popped. Tanner’s neutraphils (big infection fighting white cells) were down to 610 from 1500 last clinic visit. Somewhere around 4,000 is normal, and 500 or under is considered neutrapenic, which means you almost have no ability to fight infection. So, 610 is pretty low. They were unable to give her methotrexate (one of the two chemos she is currently taking) today since she was under 750. They were supposed to be increasing her dose of methotrexate every 10 days during this phase until she could no longer tolerate it. So, now they realize that Tanner is very sensitive to this chemo and they will have to adjust their dosages for her. She got Vincristine today, since it doesn’t really affect counts much, but will wait until next visit to see if her counts return to an acceptable level to start the Methotrexate again. They will give her a lower dose this time and go from there.

This sounds really bad, but actually isn’t. I mean, it stinks for the next 10 days since we will be more severely limited about going out (no more trips to Target or the grocery). But, it means that since her body and her leukemia are extra sensitive to the methotrexate, she will receive less of this drug for the remainder of her treatment. The doctors believe it will be no less effective, she just requires less than most people to do the job. This is a chemo that will be part of her treatment plan for the duration, so less chemicals in her little body is a good thing.

Of course, the low counts just had to coincide with Jake getting a cough and runny nose… of course. Have you ever tried to keep a six-year-old and a two-year-old away from each other when they have no one else to play with? After today, I can say, neither have I. I finally settled for them sitting at opposite ends of the sofa when they were playing Wii or watching TV. The rest I’m just trying to live with.

Her red counts are going strong, though, so she still has lots of energy and feels pretty good. The Vincristine, however, is definitely making itself known. She is getting slower and slower up the steps, the rash on her hands and feet is back and her hair is starting to fall out again.

We’ve had a busy couple of days. Her homebound teacher came for the first time on Saturday for an hour-and-a-half. The day before, Tanner, Jake and I went to Target to buy school supplies. We took the supply list, just like we were going to attend school and bought everything on that list — eight large glue sticks, 3 boxes of 24 crayons, a 6-inch ruler, etc. I think that made Tanner feel like she was ready for school. Then, we went home and made a school room in my office. We put in a table and chairs for both Tanner and the teacher, posted a big map on the wall, and set up all her supplies. She had a lot of fun putting it together and played in it for a long time afterward. We’re going to keep decorating it until it looks like a real school room.

Tanner and Mrs. O'Hara at work

Tanner and Mrs. O'Hara at work

Tonight I went to a parents meeting with Tanner’s teacher at school. We went over all the curriculum they would be covering and I almost cried (I didn‘t cry there; that would have been embarrassing. I cried at home where it is acceptable!). She would love this class and the many fun things they are doing. Tanner loves to belong to something and to be a part of the team (well, she actually likes to lead the team, but someone has to be in charge). Then, I started thinking, how in the world will she be able to keep up with just 3 hours a week of tutoring plus homework? It’s unbelievable what a first-grader learns these days! I think we were just learning how to sound out words, if that, when I went. Good grief, I had to think hard on some of the questions in their math workbook! But, the school is being so awesome about looking for ways for her to connect. She actually has a desk and a cubby with her name on it, so the kids know she’s coming and is part of the class. I’m going to try to take Tanner to see the classroom this week and she will love that.

Tonight, when John came home, he burst in the door talking about ducks down the street in our neighborhood. Ducks? We don’t have a pond here. The neighborhood backs up to the Harpeth River, but these ducks were walking down the street a good ways from the river. They grabbed bread from the fridge and headed down the street to feed them. Sure enough, these ducks seemed familiar with the bread scene and let them get fairly close before they finally flew away. It is so like my husband to run down the street in his suit, barefooted kids and all, to seize an opportunity and make the most of it.

Who would have ever thought you would see ducks just walking down the street in our waterless neighborhood? Who would have thought our daughter could get a disease that only strikes .004% of U.S. children each year? Strange things happen. Maybe it’s what you do with them that is most important.

Love,
Beth

Take Nothing for Granted

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August 11, 2009 Such a nice, relaxing day hanging out with my girl. I think she may have been a little tired from all that running we did yesterday, so we just kind of took it easy today. Went to the grocery store, ate lunch, showed up at the play therapists on the wrong day (oops!) and went to the movies.

The afternoon movie on a school day may become a staple for Tanner and I this fall. It was so nice — only two other people in the whole theatre. We went to see Up! in 3-D. It was a great movie.

I’m glad we took it easy today. Tanner definitely had some moments of not feeling well, although overall, she is taking this round well so far. I noticed today she seemed a little slow going up the stairs and sometimes didn’t alternate her legs on the steps, so I’m afraid the dreaded Vincristine may be making itself known. Hopefully, though, she was just tired. I’m also afraid that she may be developing the mouth sores that plague some people on chemo. She’s been complaining of burning in her mouth when she eats and drinks. It’s a side-effect we saw from the Vincristine during Induction, but it seems worse this time. In fact, she ate no dinner tonight at all because she said it hurt her mouth and she really balks at medicine time now, since that hurts as well. Ugggghhhh. Have I mentioned how unfair this seems?

One more girls day tomorrow and I may have to ask my parents to give Jake back on Thursday. Tanner and I miss him. It’s so quiet and Tanner keeps wanting someone to play with. He’s having a ball, though. He got to go to the golf course with my parents today. Mom said he hit about 50 balls on the driving range and then went back later and hit about 20 more. You have no idea how excited this makes my parents after enduring 3 granddaughters with no interest whatsoever in golf!

I’m enjoying this time with Tanner, though. I think when Jake goes back to school later this month, we’ll have Mommy/Daughter day once a week. Some recent blog entries I have read about kids with ALL who have died during long-term maintenance after developing an infection have really gotten to me. I think I always believed that getting to Long Term Maintenance is our goal and then we coast through the rest. First, the chemo road map we received for Tanner made me realize LTM is no picnic; there is still a lot of chemo during those remaining 1 ¾ years of treatment. Then, hearing about these kids who have died because the chemo has weakened their bodies’ ability to fight infection during Long Term Maintenance have really made me realize that there is no “coasting” during this process. This is really 2 ½ years of treatment; all of it exhausting and painful, all of it as dangerous as it is life-saving.

So, these days, I’m trying to hold Tanner a little tighter, kiss her a little more often, stop cleaning and start playing.

Hug your kids. Tell them that you love them. Take nothing for granted.

Love,
Beth

Unbelieveable!

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August 10, 2009 For some reason, I am beyond tired today, so lucky for you, I’m writing a quick update tonight! Today was the first of three days of mommy/daughter time. We drove this morning to Nickajack Lake where we met my parents for a picnic and had a Jake handoff. I thought he might cry when he realized I wasn’t coming with him, but when I kissed him goodbye and told him to have a good time, he yelled, “Come on, Gwandad, wet’s go!” I think these couple of days will be good for both kids, although Tanner and I admitted we already miss Jake.

Tanner and I got home around 2:30 and were at the pool by 3 pm. I decided the YMCA pool would be safe for her this week, since school has started and there won’t be many people, especially kids, there. So, for the first time this summer, we were able to go to the Y pool. We swam for 2 straight hours and I mean swam. No sitting on the side, no crawling around in the water; we spent most of the time in water over her head. When we left, I was exhausted and thought she was too. But, after dinner, she decided she wanted us all to go for a bike ride together. John and I usually don’t ride our bikes with the kids, since Jake is so little, so this was a special treat for her. We rode all around the neighborhood, then over to the school and around the parking lot and building several times, then back home. She rode up all the hills and blew both our minds. How is this possible?!!! How can someone taking this much chemo still have so much energy? It is almost bizarre.

While her energy level is good, she is definitely experiencing the side effects of the chemo and had some trouble sleeping last night. I had to give her painkiller last night for the first time in 3 or more weeks.

She wants to go see a movie tomorrow… again, something we haven’t done since she got leukemia. We will go at an odd time and throw a blanket over the seats and relish the moment.

I’m going to sleep now to try to rest up and be able to keep up with her tomorrow.

Love,
Beth

Lemonade and a Cookie… 50 cents

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lemonad stand 001August 8, 2009 Since when do kids make $18 from a lemonade stand?!!! I don’t ever remember making more than about two bucks and splitting it with my best friend, Carol.

My friend Ashley had a list of things her kids wanted to do this summer and having a lemonade stand was one of the items that hadn’t been checked off. Since school starts Monday, time was a wastin’ and she invited us to help. The kids made a poster, I made the lemonade, Ashley made sugar cookies and we met yesterday in the median between our houses under the shade of some trees. Then, those girls got to work flagging down cars. Even Jake handed out some cookies. Almost every neighbor that drove by stopped and were generous tippers. They had a ton of fun and when we counted up the kitty, they made $18, split three ways!

Tanner, Jake and I had been to Pinkerton Park earlier that day for a bike ride and a picnic in the shade. It was 91 degrees by the time we got there and I noticed the first signs of the Vincristine creeping in. Tanner got hot quickly and, even though she rode quite a while, the heat eventually got the best of her and I had to send her crying to sit with Jake under the pavilion while I put the bikes back in the car and got our lunch.

The chemo has also started effecting her sense of taste. She handed me a pack of gum she just bought today and said, “It tastes yucky!” Tanner loves gum so I know the chemo changed the way it tastes. And, her medicine “burned” her mouth today, which is also some weird side effect of the Vincristine. That particular chemo has a list of side effects a mile long, and unfortunately, is our mainstay chemo for the next two years.

I got to spend a little one-on-one with Jake today for the first time in a while. I took him to the YMCA pool and we had the best time. Tanner can’t go into a public pool like that so I felt bad taking him and not her, but he needed to spend some time in a pool where he can actually reach the bottom. Tanner and John went for ice cream and to the dollar store to spend her lemonade stand earnings (that 6 bucks was burning a hole in her pocket).

John and I sat on the sofa last night and looked through the fan list for Tanner’s Fcebook page (Friends of Tanner). She has 497 fans and after more than an hour, we finally gave up trying to figure out how all those people know us and went to bed feeling blessed and loved. It boggles my mind that between the facebook fans and those that read the blog directly from www.tanner.celiamusic.net, there are probably 800 or more people wishing us well. We feel all those positive thoughts and prayers and thank you all every day for your support. Some day soon, I hope to use all that support to make difference and save some other family from going through this horror.

And, speaking of all that support, thanks to everyone who prayed for our friend Lily. Lily made counts this week and will be starting school next week on the first day… just like everyone else! Amen.

Love,
Beth

Monkey Business

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Kim, me and Beth relaxing at dinner

Kim, me and Beth relaxing at dinner

August 4, 2009 I’m back! It was a great weekend! We went to a big, beautiful cabin in the mountains of Asheville, NC. Lots of lounging, shopping, eating, laughing, girl talk, sleeping, more lounging, free flowing wine and a beautiful view of the smokies to boot. We spent much of our time trying to think of names for Kim’s two goldendoodle puppies that she will bring home soon. “Rhett and Scarlet” and “Brandy and Whiskey” were Kim’s favorites, although Beth and I maintain that no matter what she decides, we are calling them “Jethro and Ellie Mae.” After all, we were in the “hills, that is.”

Wouldn’t have been such a great time without Beth and Kim and wouldn’t have been possible without my awesome husband and mother-in-law at home taking care of the kids.

I did miss the kids, though and I was happy to be home. Things seemed to go very well at while I was gone. I think the backpack making party and barbecue afterward was the highlight for Tanner. Everyone seemed to have a good time and they made a lot of backpacks to boot. I love this picture of them. Tanner and Jake look like they had a huge time, as usual. Thanks to our church family for making this possible for Tanner.

Tanner, Jake and Friends make backpacks for the needy

Tanner, Jake and Friends make backpacks for the needy


This week has been a nice break from the normally restrictive nature of our outings. With Tanner’s counts at an almost normal level (although her immune system is still more compromised than normal), we were able to cautiously get out a little more. We ate last night at Pie in the Sky restaurant where the kids get to play with pizza dough while they wait for their pizza. Then, this morning I took the kids to Opry Mills mall to buy new shoes and go to the Rainforest Cafe. Normally, this is a huge hit, but it was nearly a bust today. I forgot to bring Tanner a sweater and she was so cold I wrapped a paper napkin around her shoulders while Jake spent the whole time very nervous that the animatronic monkeys were going to leave their perch and attack us. He didn’t even eat since he had his fingers stuck in his ears the whole time saying, “It’s too woud” over and over again. When we threw in the towel and decided to take the food with us and eat it in the car on the way home, he said, “Wets get out of here!” Tanner and I laughed about that the whole way home.

This afternoon Tanner had her friend, Isabella, over for a playdate. They made a hair salon in the bathroom and washed each other’s hair and then put on an impressive show for John, Jake and I complete with dancing, piano, acting and singing. Tanner sang the national anthem. It was quite a patriotic moment.

We’ve been incorporating some of the play therapist’s suggestions into handling Tanner and it does appear to be improving things. There are less tantrums, and although she is definitely still angry, she seems to be able to better get hold of herself. She went to talk with the therapist today. I won’t find out what they talked about until next week, but Tanner had a good time and wants to go back so that’s a good sign. Hopefully, she’ll be able to unload a little anger at these sessions and we can find a way to talk to her about this whole rotten thing. It would be nice to be her partner in this instead of her punching bag.

Poor Jake has definitely started to feel the tension in the house and is acting out as well. (I’m just waiting for the dog to rebel next!) It just breaks my heart. He is the sweetest little thing ever and it’s not in his nature to act this way. Thankfully, he’s pretty easy to deal with and I’m hoping a little visit to Grandmom and Grandad’s next week might give him the undivided attention he deserves. It’s hard for a little fella to not get lost in all this, and we need to remember that his needs are just as important as Tanner’s even if she is sick.

Tomorrow is another landmark in this long journey. It is the last day of Consolidation, the second of five phases of treatment Tanner will endure over 2 1/2 years. It’s also probably the last day we’ll have for a while that she’ll be feeling this good. Thursday, provided her counts remain above 750, which I assume they will, we will start Interim Maintenance. That day, August 6, will mark the first day of exactly two years of remaining treatment. They count it from the first day of Interim Maintenance and go two years to the day from then. Crazy how they know exactly how long to treat leukemia to give you the best chance of avoiding a relapse.

Again, please pray for Tanner’s friend Lily. She has only a week to get her counts up high enough to start school on-time and still isn’t there yet. I just know from our experience how important it would be to her to be there on that first day and to be part of the class from the start. This is so hard for these children… not something an 8-year-old or a six-year-old should have to worry about.

Love,
Beth

Biking In, But Not Out

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July 26, 2009 We headed out this morning to go “letterboxing” on a Greenway across from Aspen Grove Park. If you’ve never been letterboxing and you have kids, you should try it. You go to www.letterboxing.org and do a search of letterboxes in your area, or an area you are going to visit. When you select a letterbox to find, you’ll get a clue that contains directions to a box that someone has hidden. You take with you stamps and ink pads and a little notebook. When you get there, you follow the directions to the letterbox and find it. It will usually be a small Tupperware box that contains a little notebook and a stamp. You put your stamps in their notebooks and write a notation saying who you are and when you were there. Then, you use the stamp in the box to stamp your book, put the letterbox back where you found it and go on your merry way. To the kids, it’s like a treasure hunt… they love it.

Our stamps are an elmo stamp for Jake and a Zoe ballerina stamp for Tanner, and we sign all our pages as, “Two little monsters in Franklin” (do you sense some foreshadowing here?). We found a new series of 11 letterboxes that someone had just put out on any easy paved trail in Aspen Grove and thought we would go.

We arrived at the park to find that Tanner’s chain had somehow fallen off the bike in the car. After 10 minutes or so and lots of grease stains, John got the chain back on and we all headed out, excited to find the boxes. We found an owl stamp under a bridge, a heron stamp and elk stamp hidden under trees and a deer stamp under some rocks. The kids were having so much fun. Tanner loved to find the boxes and Jake loved doing the stamping.

That was when I noticed that Jake didn’t smell too good anymore. Bicycle riding and a poopy diaper… a great combination. So, we decide to head back and find the rest of the boxes another day.

That’s when Tanner rides off the paved path and into the grass. When she rides back up on to the pavement, she falls face first. She actually was okay; just a minor knee scrape, but she is shaken up and the chain has fallen off the bike again. I hugged her and she wanted me to hold her hand as we began walking and pulling her disabled bike along.

That’s when Jake decided he wanted to hold my hand, too. Only he can’t, because I have a bike in that hand. So, he lays down in the path and cries and refuses to move anymore. We tried walking away and leaving him, which had limited success, but in the end, John ended up carrying both bikes, while I held both kids’ hands.

We walked all the way back, very slowly, picking flowers along the way. Tanner was tiring at that point, her stamina is amazing, but still not normal Tanner energy.

John and I laughed when we got back to the car. I said, “We took a 2-year-old, a six-year-old with leukemia and a twelve-year-old dog on a bike ride… perhaps this was ill-fated to from the start.”

But, it was still fun, despite the fact that it didn’t end the way we planned. And, we’ll go back someday soon to find the rest of those letterboxes. We’re just thrilled that we can even attempt to do something like this considering where we were just a month ago. Living with leukemia is no picnic, but it can be done. And, it often is better than I ever imagined it could be.

Love,
Beth

Clinic Day

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Tanner "resting" after treatment today

Tanner "resting" after treatment today

July 23, 2009 Another clinic day. Another spinal with chemo. Is it weird to say, that all things considered, it was a really good day. Tanner loves the nurses, especially Carie, her favorite. John and I love Lee, our recovery nurse who checks the roster every day to see if Tanner might be coming in so she can request her. In a strange way, it’s like seeing our cancer friends every Thursday, and today we met a new one.

John had an intern at Franklin American whose brother has T-cell ALL. He sent John a link to his Caring Bridge site and reached out to us to let us know he understood what we are going through. Today, when we were in recovery waiting for Tanner to wake up, a sedated teenaged boy was wheeled in next to her. John kept looking at him and pulled up the Website for his friends’ brother and, sure enough, it was him. Childhood cancer is a small world… thankfully.

We never got to meet Thomas; he was still under when we left, but we did meet his mother and she is amazing. Six children (that alone makes her my hero) and he is her next to youngest. They are fighters, for sure, though. A tough crew that I know will leave cancer wishing it had picked someone else.

Tanner’s counts today were pretty good. Her platelets, which for some reason were triple the normal amount last week, were down to only double normal today. Her hemoglobin was up a little bit, which helps her energy level (although it really hasn’t needed any help lately!), and her neutraphils (the big infection fighters) were down from 2200 to 1400, which is still good for a kid with leukemia. We have learned that even though her counts have been really good so far, they are still all over the place from week to week, just evidence of the power of the chemo. It’s easy sometimes to think she’s totally fine since she’s been feeling so good. I find these numbers we hold our breath over every week to be sobering; they serve as a reminder that despite the way it looks, her body is still under tremendous strain.

We are only one week from finishing Consolidation, our second phase of treatment. No surgeries or extra chemo next week; we just go in for a blood count (now, that’s what I call a break!). She’ll continue to take the 6-MP, which is an oral chemo, every day for the rest of the next week. Then if her counts are still okay, we’ll start Interim Maintenance the following Thursday. We will only have to go to clinic every 10 days for the two months of this phase, but she will get the dreaded Vincristine every visit in addition to IV injected Methotrexate. Thus far, she has only had methotrexate injected into her spinal column, so we don’t really know how this chemo will effect her when it is injected into her bloodstream.

The physical therapist is coming back tomorrow, hopefully, to go over the at-home program she has designed for us. And, next week, John and I have an appointment with a counselor that specializes in play therapy. Hopefully, she can help us and Tanner learn some constructive ways to let go of her anger. She was an angel today, of course, since we called a therapist!

Jake spends every Clinic Day with Aunt Beth. When we leave in the morning, he happily shouts, “Bye Mommy, Daddy, Tanner. Happy Day at the hospital!,” from the breakfast table. He doesn’t care in the least that we are leaving him; he is going to Aunt Beth’s house where there is a pond, geese, cats, a garden, peppers to pick, flowers to plant, and various other fascinating activities that he doesn’t have at home. Thank you, Beth, for making Thursday’s my son’s favorite day (and for folding my laundry!).

Check out Jake's wheels at Aunt Beth's house

Check out Jake's wheels at Aunt Beth's house

Hilariously enough, Tanner had a hard time going to sleep tonight. Before leukemia, Tanner never napped; if she did, she wouldn’t be able to go to bed until hours after her bedtime. Tonight, after she had come out of her room for about the 10th time after going to bed, I said to John, “Do you think being sedated during surgery is like a nap for her?” Unbelievably, we agreed that it must be. You gotta love the unstoppable nature of our girl.

Love,
Beth

Patience

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July 19, 2009 Sorry for not posting over the weekend; had a hot date with my husband on Friday night and got home too late to write. Then, on Saturday, I was just too tired after the hot date the night before and had to go to bed early (that’s so sad!). We’re not sleeping so well again here at the Page house. Tanner has been doing so well that we decided we no longer needed to sleep in her room with her; but after six weeks of doing so, the transition is, expectedly, a little rough. I think she’ll do fine, eventually, but it has thrown things off for the time being and she keeps waking us up at night to fulfill various attention-getting requests… I’m cold, I’m thirsty, my tummy hurts, I lost my stuffed animal, I’m afraid… you get the picture.

My Aunt Debbie came in from Huntsville, AL, on Friday and stayed the night with us. John and I got to go have dinner at Red Pony (aka, the hot date)… alone… sigh. It was lovely. The kids loved seeing her and we had a nice visit. So sweet of her to do that for us.

Saturday morning, spur of the moment, we decided to take the kids to the zoo. Tanner’s counts were good this week and the docs are always emphasizing that outdoor stuff is more forgiving as far as germs go, so we decided we could just stay out of the crowds and off the beaten path. Unfortunately, the weather was so unusually pleasant for July (70 degrees!) that everyone else had the same idea. We managed to stay away from everyone for a while, but left after about and hour or so and vowed to come back the next morning to see the other side of the zoo (Jake was desperate to see Tigers). We did go back this morning at 9 am when all the good Christians were in church, which was much better and we had a great time. Even wiped down a carousel cheetah with a antibacterial wipe and rode the carousel. And, of course, saw the Tigers. Jake went to bed chanting, “Lions and Tigers and Bears, Oh My!”

I got away on Saturday to have a pedicure with an old friend I haven’t seen in a while. It was great to catch up. I confessed to her that when I used to get out by myself I had a million ideas about what I could do; now I just go to the grocery store. I can’t think of anything to do; nothing seems very important anymore. So, she promised to make me leave the house every once in while for something fun.

With the exception of some stomach pain and nausea, Tanner continues to feel really good. This month is a gift and we believe we will look back on the Consolidation treatment phase as a good time for us. We know we have harder times coming, so we’re milking this for all it’s worth.

The physical therapist came on Friday to evaluate Tanner. As we have noticed, she definitely has weakness in her legs, particularly her quadriceps when her legs are bent and her hamstrings with legs both bent and straight. Her right side is definitely weaker than her left; no one is certain why this is, but it was definitely the more painful of the two from the leukemia at the very beginning. It was very eye-opening to watch as she asked Tanner to skip and she just couldn’t make the right leg do it, and when she asked her to stand on one leg and then the other. She was able to stand for 26 seconds on her left leg before we just told her to stop. Then, we gave her the best out of three tries on her right leg, which was only 6 seconds… yikes! Scares me to think that the leukemia could have caused some permanent damage in that leg.

The good news is that the therapist felt like she was making great gains, doing well in comparison with many kids at this stage of the game, and that the activities we are already doing (biking, swimming, dancing) are all therapeutic in and of themselves. She suggested that we do home therapy with her for the time being and save our PT visits for a time when she may need them more, like when she is taking more vincristine. She is coming back next Friday to teach us a home program, which is based on play activities, and will check in on us by phone for the next few weeks.

We continue to have a really hard time with Tanner’s behavior. We are no strangers to challenging behavior from her… anyone who knows Tanner knows that her huge personality doesn’t come without it’s drawbacks. But, she is definitely pushing us to our limits. There is no punishment that she won’t take, at this point, to be able to have a fight with us; and she is picking fights at every turn. I can’t help but believe that fighting with us allows her to release some of the anger she is feeling but doesn’t know what to do with. We’ve decided to stop basing our discipline on punishment alone and just stop responding to her invitations to fight, a strategy which is very difficult for me. I’m also going to contact the social workers at Vanderbilt and ask how we can help her express some of this anger in a healthier way.

It’s so hard to know the right thing to do in this situation. It’s always hard, as a parent, to feel like you’re making the right decision, but this is definitely uncharted water and I feel more unsure than ever before that I’m doing right by her. I want her to know that the rules still apply, even when you’re sick, but also realize that I can’t even begin to understand what she is going through. Even though it feels like the whole family has leukemia, we don’t; she bears that burden alone.

It’s been a fun weekend, but also a trying one. It’s so sad to mar this time where she feels so good with all this discipline, but it’s just necessary. Ugh, ugh, ugh.

Pray that we have the patience to deal with her with firm love and understanding and that she finds a way to express herself to us, or someone, so she feels better.

Love,
Beth

A Relaxing Day

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July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.

We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?

I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.

Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.

She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.

Just a typical day at the Page house…

Love,
Beth