Not My Best Moments

September 16, 2009 As I write this, my children, by some miracle of God, are quietly and peacefully playing by themselves in a tent in the playroom. So, I expect that as soon as I dare to write something here, bedlam will erupt! (Actually, they did come down the minute I started typing, but I bribed them with fruit snacks and they have gone back upstairs!)

So, I’ve just not been at my best this week. I’ve long struggled with staying home with my kids. I want to do it, believe it is the right thing to do for them, and enjoy it most days. But, sometimes, I miss having a job that doesn’t involve sticky hands, playing barbies or doing laundry. Last year, with Tanner in kindergarten and Jake in Mom’s Day Out 2 days a week, I felt like I had finally hit my stride. It was just the right balance between being able to spend time with my kids and being able to do something mentally challenging, like co-chairing the fundraiser at Jake’s school.

When Tanner was diagnosed this summer, I had her signed up for some cool camps and activities and was looking forward to spending lots of time at the pool with the kids. Of course, none of those things ever happened. When fall came around, I was ready for the familiar schedule are structure of school, but that never happened either.

Jake is going to school 2 days a week, but Tanner is, of course, home with me. And, while I try to make those days special for her, it’s hard when you can’t really go anywhere and she sometimes doesn’t feel good. I don’t stay home well; I like to get out. It refreshes my spirit and gives me energy.

So, I’ve not been at my best this week… being here all the time is dragging at me. Yesterday, I thought maybe Tanner and I would go to a movie, but she woke pale… very pale… and not feeling well. I suspect her red cell count is down; she had a headache, didn’t feel well and slept late, all signs of anemia. Instead of going to a movie, we rented one and stayed home, which sounds nice, unless it’s the 30th day in a row you’ve stayed at home. She started feeling better around noon and we went to an outside restaurant for lunch, but it was still a long day.

I miss sitting with my friends at McDonalds talking about grown up things while our kids play on the playground.

As I write this, I feel ungrateful for the miracle that my child is alive despite this insidious disease she has. I should be cherishing every moment, right? And, I feel guilty because this is difficult for Tanner, too, and here I am feeling sorry for myself. But, in the immortal words of my good friend Ron Whitler, there are just only so many kid games an adult can play without losing their minds. My temper is short, my tolerance for pretending is nil and I really wouldn’t like to be my kids this week.

Ugghhh. Must be the rain.

I’m going upstairs to be the monster outside the tent. I’ll try to pretend that I’m enjoying it and maybe eventually I will!

Beth

Eerily Normal

zoo 09August 31, 2009 The other night, I said to John, “It’s almost like you could forget there’s anything wrong with her.”

Things have been so normal. She feels really good, has great energy, and has really leveled out emotionally. We’re so grateful. It’s more than we ever hoped for at this point.

She had a dance lesson Friday, which she loved. Played with a friend all afternoon. We went to the zoo Sunday morning before everyone else got there. It was cool and empty and wonderful. She played soccer and ran around a field with friends yesterday afternoon. She’s a little slow and a little awkward when she runs, but she runs, which didn’t seem possible just two months ago when she could barely walk.

John’s reply to my pointing out how pleasantly surprised I am by Tanner’s well-being was that it seemed, “Eerily normal.”

That may seem an odd comment for a situation we are so thankful for, but it struck just right for me.

It seems normal if you could forget about the medicine 3-5 times a day, or her pale skin or her thinning hair. The frequent stomach aches and nausea. The fact that she goes to the bathroom 25 or so times a day or that she wakes up 3-4 times a night.

I think it seems an eerie normal because we don’t trust it. We feel certain it won’t last and behind it lurks the constant worry that any small fever or illness could send her to the hospital immediately.

Today is a good example. After feeling so great yesterday, she woke this morning with a sore throat and joint pain in her legs and feet. I’ve had to help her to the bathroom all morning and I can‘t tell whether the sore throat is from emerging mouth sores or is an infection. See. Eerily normal.

But, overall, we are grateful beyond belief that she is as able as she is. It is so much more than we ever hoped for when we began this journey three months ago.

Love,
Beth

Same last name?

 

Tanner and Jake playing doctor in June

Tanner and Jake playing doctor in June

August 25, 2009 It’s amazing to watch a kid internalizing something that is happening to them and then see it show up in their play. I was in the kitchen cleaning up today and heard Jake yelling, “No, no, no!” at Tanner as she was saying, “You have to hold still or it will hurt!” This, in the world of a mother, is grounds for leaping the kitchen bar to see what is going on.

 

What I found was Jake, lying on the floor with his shirt unbuttoned, Tanner trying to hold him down as she “sliced” him with a pretend scalpel from the doctor kit. After convincing Tanner that she really shouldn’t hold her brother down for pretend medical procedures, I volunteered to let her operate on me instead.

Tanner proceeded, with great aplomb, to surgically implant a port-a-cath into my chest. Well, actually, it was a little closer to my belly-button, but why nitpick?

She then accessed my port with a pretend needle, and with a syringe, proceeded to “flush” my port and administer chemo. All the while, I was supposed to be asleep from “sleepy milk.”

Priceless… both for my memory bank and for Tanner’s mental health. In one playful moment, she turned the tables and became the one in control of all the medical procedures she has endured. Good for her.

This play mimics many of the things that happen to her each week at clinic or have happened to her during her hospital stay at diagnosis. The day after she was diagnosed, Tanner had a port-a-cath surgically implanted into her chest. This is a small, circular port with a silicone bubble on the top and a catheter line that runs from the port to an artery directly above her heart. When she needs anything you would normally receive or give through an IV (blood, medicine, chemo, etc.), she gets it through her port. It allows medicine to get through her body quickly and allows her more freedom than a central line which leaves the IV tubes hanging out of the child’s chest. Every week, when we go to clinic, the nurse sticks Tanner with an IV needle through her skin into her port. That’s how they draw blood to check her counts and how the administer her chemo. Luckily, there is a numbing cream we can put on her port before we go to the hospital that really cuts down on the pain of accessing (and deaccessing) the port.

Last week, she sat at a disconnected computer in my office while Jake and I played foosball and pretended to be the admitting clerk at the hospital. She told me to pretend I was in the ER and she was trying to find me a room. The conversation went something like this:

T: Mam, can you tell me your name?
B: Beth Page

T: What is your son’s name?
B: Jake

T: Same last name?
B: Uh, yes.

T: Your phone number area code first?
B: I give the number, trying not to laugh

T: I’ll need your insurance company
B: United Healthcare

T: And your group number
B: Pause (Now I am laughing and have to take a moment). 51645

T: Thank you, Mam. I’m looking for a room for you and your son. You don’t want to have to sleep in the ER; it’s very noisy here. Just give me a minute. (she types at the computer for a while). Guess what? I found you a room! You’re so lucky!

Too funny… and too awesome. This is exactly the type of thing that lets her process what has been happening to her and shows me that she is accepting this new normal. She is six, but she has it all figured out, thanks to a doctor’s kit and a somewhat willing brother as a patient.

Love,
Beth

Don’t Let the Bedbugs Bite

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

Stir Crazy

August 20, 2009 It’s just been three days since we’ve been on these new precautions due to Tanner’s low counts, and already, we’re stir crazy. We like to go, go, go here at the Page house and it’s hard to find someplace to go right now. So, this morning, after our plans to go swimming had been foiled by the impending storms, we were verklempt. What do you do when you can’t really go anywhere?

We decided, after playing all morning at the house, to go out for a bike ride before lunch. Our neighborhood is right next door to Tanner’s Elementary school and you can see the playground from the end of street. Not thinking, I led my little troop on scooters and bikes down to the cul-de-sac which borders the school. Tanner and Jake were ahead of me, as I was on foot pulling a wagon. When I rounded the corner, Tanner was standing with her back to me, off her bike, facing the playground where I could hear schoolchildren shrieking and laughing. I watched her tiny shoulders droop and saw her bike helmet slide to the ground. She sunk to her knees and curled up, crying, but still staring at the playground, where she should have been playing.

I approached her slowly, kissed her head and pulled her into my lap. “I’m so sorry, T,” was all I could think to say. She cried for a little while, then got up, threw her helmet in anger and began running toward the playground. “I can go there if I want. I don’t care if I have leukemia!” she yelled. I just let her go, knowing she wouldn’t get far. She stopped and lay down in the grass, facedown.

Just then, a mother of one of Tanner’s classmates who had seen us from the parking lot approached… a welcome distraction. She chatted with Tanner, telling her how much her classmates missed her and were waiting for her return. Tanner warmed up gradually and was ready to show off her new “two-wheeler” bike riding skills when Jake fell and skinned his knee. Lots more crying. Then, Tanner, waving at our guest, yelled, “Watch me ride!” Right before the chain fell off of her bike. Seriously.

Are you there God, it’s me, Beth Page. I think you’ve forgotten about us down here. A girl could use a break now and then, you know?

Needless to say, we went home. Tanner crammed in the wagon, with her disabled bike resting precariously across the edge. Jake riding his scooter with his bloody knee, crying, “I’m bweeding.”

In the end, though, it turned out to be an okay day, despite a rocky start. We ate lunch, Jake took a nap, Tanner played a new computer game and did some homework. Later, we went back down to the cul-de-sac (yes, we are gluttons for punishment) after having repaired the bike and applying a large band-aid, and ended up flying a kite and playing on the school playground with neighbor kids.

Then, the ducks came back… for the fifth day. We didn’t have any bread this time (we’ve given away all we had to them on previous nights), but the neighbor had ritz crackers and we fed them those. Seems those duck have taken up residence.

The Vincristine continued it’s assault on Tanner’s legs today. She fell in the morning, saying her foot suddenly hurt and she could not walk on it. We rested for 5 minutes and it was okay, but it’s just evidence of the neuropathy that the Vincristine causes. I noticed her running in the field today; she is looking awkward again. And, at bedtime, her right leg failed her on the way up the stairs and she fell. She asked why she was having so much trouble on the stairs. “It’s the Vincristine,” was all I needed to say. She knows what that means, and although it frustrates her, she accepts it.

Even though what happened at the playground was sad this morning, it marked an improvement in her ability to articulate her emotional pain appropriately. Two weeks ago, that would have ended in a giant temper tantrum and I would have been the punching bag. Today, she threw a helmet in anger and let me hold her while she cried. A vast improvement that I think we can attribute to the play therapy. The therapist feels like she is working out some of her fears through play, and that just being able to express it in some way is a relief to her.

So, it’s two steps forward and one step back… or maybe the opposite today. We’re hoping for sunshine tomorrow so we can try swimming again in the morning.

Note to self: do not go to the cul-de-sac during school hours… just too painful.

Love,
Beth

My Fervent Hope

August 6, 2011. That is the day that Tanner will take her last dose of chemo. How crazy is that? Crazy that the doctors can pick a date out of the air 2 years from now and say the leukemia will be gone for good then. Crazy that we will be living this new strange life for two more years. Crazy that anybody, much less such a little body, can take that much abuse and survive.

I don’t know if I’ll dance in celebration that day or spend it crying with relief. I’m hoping that the little 8-year-old girl I see that day is happy and thriving and left with as few physical and emotional scars as possible.

I’ve grappled this week, for the first time since the day Tanner was diagnosed, with the possibility that Tanner might not make it through this ordeal. As I mentioned before, I learned about two children recently who died during long-term maintenance after getting infections. These were kids whose parents, I am sure, were certain their kids were strong enough to beat the beast, who were bolstered by the doctors’ assurance that their children had a highly favorable prognosis, who thought their kids had survived the worst of it.

The truth is, it was not the leukemia that killed these kids, it was the chemo. The chemo keeps their white counts so low that they are susceptible to these infections, and it ravages their little bodies so that their vital organs are not strong enough to weather the storm. It is my understanding that it ends quickly for these kids; the infection does it’s work swiftly.

So, as much as I have tried to stop thinking about this, I have had to admit to myself this week, that this could happen to Tanner. That, as strong as she is, as well as she is doing, as low as her risk category is, there is still the possibility that none of this will matter and that the unthinkable could happen overnight.

I think Tanner has been thinking about it, too. She has, for the second week in a row, made cemeteries in the sand box at the play therapists’ office. When asked by the therapist to “Make your world” in the sandbox, she buried little figures and topped them with tombstones. Earlier this week, she asked me to tell her what I liked so she would know where to bury me, and asked if I wanted to know what she liked so I would know where to bury her. And, we wonder why she’s acting out…

We have to find a treatment for cancer that is not as dangerous as the disease itself. Or, better yet, a cure that eliminates the need for treatment altogether. It is my most fervent hope that, as my friend Robin put it, we will look back in 20 years and think how barbaric it was that we treated cancer patients with these debilitating drugs. Heck, why not shoot for 10 years from now?

Whether it is a child or an adult with cancer, no one should have to endure this. No family should have to go through this. No six-year-old should have to worry about where they’re going to be buried if they die.

There has to be a better way.

Love,
Beth

Unbelieveable!

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

A Long Day for the Right Reasons

Ready for Clinic

Ready for Clinic

August 6, 2009 Did you ever feel like it’s been about four days since this morning? Today was chock full… of goodness, luckily. Today was clinic day and our first day of Interim Maintenance. Tanner’s neutraphils (big infection fighting white cells) were down to 1500 from 3400 last week. 1,500 is still good for a kid with leukemia, but 3,400 was almost normal. So, farewell freedom… it’s back to precautions. We feel lucky to have had that week, though. It was nice to be able to get out.

I always feel like my preconceptions about chemo have been dramatized by television. I picture rows of people sitting in infusion chairs for hours, receiving IV chemo and feeling really sick. While there are some chemos that require a long infusion time, most don’t. And, there are definitely some kids in there that look like they’re feeling really bad, but many don’t. Tanner received two types of chemo today in less than 10 minutes. No IV pole or anything. The nurse just injects them very slowly from a syringe into Tanner’s IV line which is connected to her port. All done. And, as far as feeling really sick… we haven’t come across that yet as of bedtime today. In fact, Tanner was super active today. We played Wii Cheerleader, swam at the Whitler’s and played with some friends that dropped by after dinner. Chemo?!!! What chemo?!!!

Of course, I’m not naive enough to think this will last. I do believe this phase will be more difficult than the last and the cumulative effect of the vincristine and the increasing dosage of the methotrexate will take their toll. But, for now, you would never know anything’s wrong with her.

I registered Tanner for 1st grade at Moore Elementary this evening. It was bittersweet. I was excited that she got Mrs. Franklin as a teacher and that Mrs. O’hara, the reading teacher, will be her homebound teacher. She also has a great class, with many little friends from kindergarten. But, it made me sad she couldn’t come with me like all the other kids, to meet her teacher and see friends she hadn’t seen all summer.

Tanner made me promise to write down the names of all the kids in her class. When I got home, we got her jammies on and sat in bed with her yearbook and looked up all the kids, her classroom teacher and her homebound teacher. Tanner is a social butterfly and she knew all but two of the kids in her class; and those two were new to the school. She was really excited and I wondered whether she really understands that all those kids will be in class without her for at least half the year.

The school is being so remarkable about trying to make her feel connected, though. They’re investigating the idea of teleconferencing through computers so she can check in with the class once a day, and the homebound teacher said she was going home to read Tanner’s blog so she could learn more about her. Her kindergarten teacher, Mrs. Cope stopped by this past weekend and brought Tanner a Build-a-Bear. She asked if she could stop by once a week during this school year and read with her. Wow! Moore Elementary is a small school and we are so grateful for the feeling of family there and for the love and concern they show us and our daughter.

So, it was a full day, but a good one. Four days ago this morning, I thought we might have had a rough day because of the chemo, but it was a great day. Which just goes to show you how unpredictable leukemia, chemo and my kid are.

Love,
Beth

A Little Freedom

July 30, 2009 A great day at clinic today. Tanner’s counts were super — her neutraphils are 3400, which is almost normal. So, a little more freedom this week; we are allowed to go to a restaurant, not just to bring food home, but… drumroll please… to actually eat there! Hurray!!!

It was our easiest week yet. We just went in for blood work and a doctor visit and then came home. We had a prescription meds to wait for downstairs, so we ate pizza in the food court (again, something we have never been able to do) while we waited. Tanner seemed excited just to be able to eat in the presence of others.

Next week, provided her counts are still good, we start our third phase of treatment (of five), Interim Maintenance. It lasts two months and consists of IV infusions of vincristine and of Methotrexate, which up until now, she has only had injected into her spinal fluid. We will go every 10 days, and the methotrexate level will be increased each time until her counts are so low, we can’t increase it any more. So, we can expect some low counts in this next phase, I’m afraid. The Vincristine causes neuropathy (nerve pain, weakness, tremors) in addition to a long list of other side effects, and the methotrexate can cause painful mouth sores. We are taking an amino acid called glutamine to try to prevent the mouth sores. I also think Vincristine is what caused so much of Tanner’s hair to fall out in the first phase of treatment. Her hairloss has pretty much ceased, but we haven’t had any Vincristine for a while. I think this will be the point where the rest will likely fall out. I has thinned considerably, but she has a lot of hair, so it’s still pretty. My hope is that it is cool outside by the time she needs a wig/hat/scarf so it will be comfortable for her.

Also, school starts in just a little over one week. I think that will be really hard for her and will also mean there is no one available to play with her during the day. Then, she will have a homebound teacher for two hours, two days a week after school, so that will be two more days she can’t play with anyone. This will be our toughest challenge yet, I believe. Tanner is highly social and it will be a real challenge to keep her happy with no one to play with. I’m going to have to work very hard to develop some kind of schedule to our day, something I am not great at.

Had a great visit with the play therapist yesterday. John and I met with her for an initial consultation; Tanner will come next week. We liked her a lot and she seemed to have good insight into Tanner’s personality without even having met her. She believes some of Tanner’s misbehavior is a result of anger, but also that some is anxiety. She told us to think of anxiety as energy and explained that, in a six-year-old, if energy is not somehow channeled positively, it will become misbehavior. She’s helping us learn some strategies to redirect that energy and she will help Tanner do so also. We’re hoping it will help her get through not just leukemia, but through life.

Tomorrow I leave on my girl’s weekend to a mystery location. I am so excited… I expect lots of girl talk, laughing and, most of all, sleep. I don’t believe I’ve spent a weekend with the girls since Tanner has been born. Thanks again to Beth and Kim for planning the weekend and just for being my best friends for all these years. But, most of all, thanks to my amazing husband for recognizing how much I needed this and for knowing that I would have never done it on my own.

So, I’m taking a blog vacation until Monday. Maybe John will update you while I’m gone!

Love,
Beth

Biking In, But Not Out

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