Category Archives: difficult things

In the Hospital

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May 1, 2011

When Tanner was diagnosed with Leukemia, I thought it was going to be the most difficult day of my life. But, at least there was a concrete plan of how best to treat her. There were numbers and statistics and protocols based on years of research. And, I knew that nothing any of us had done caused it, and nothing we could have done would have prevented it.

Today is different; and in many ways, worse. Tanner is inpatient at Vanderbilt for a psych evaluation after two tough days that led us to the decision that she needed more help than we, or a visit to Allison, could provide. I don’t want to give a lot of details, because Tanner deserves some privacy as she struggles to deal with a disease that had me reduced to a day full of tears and xanax just last week. If it is more than I can bear sometimes, I think it is not unrealistic to expect that it is more than a 7-year-old can bear sometimes, too.

We are also concerned that her antidepressants could have backfired. Anti-depressants and kids are known to be tricky and the labels on her medicine warn that it can cause suicidal thoughts in children.

She has also had a very rough couple of weeks. I didn’t write about it, again to give her some space to deal with it without others knowing, but since she told her whole class about, I figure she wouldn’t mind. She began losing her hair again last month after her chemo. We were so blindsided; we had no idea that this could happen again. John found her crying on the slide at the playground and she told him that she had known for days that it was falling out, but thought we would think she was stupid for thinking that. Turns out, it happens sometimes. It seemed like an unimaginable cruelty to have it happen so close to the end for her. Like cancer was trying to get in it’s last licks. It stopped falling out after about two weeks and, although she is noticeably thin on top, she still has her hair and it has not happened again after this round of chemo. Still, it was incredibly difficult for her… for all of us, really.

Then, we had my colossal mistake… where I thought her LP a few weeks ago was the last one… only it wasn’t. I don’t think she can really get over thinking maybe I lied to her on purpose. I know I had a rough couple of days after that one and still haven’t really forgiven myself for it, but it is what it is and I can’t do anything to change it.

Then, this week, we sent Jake to my parents for some much needed special time. It’s hard being the “other kid;” the one who doesn’t have cancer. He needed that one on one attention from his grandparents, and I needed some time alone to regroup and reorganize. Unfortunately, in meeting our needs, I think we hurt Tanner. It was very clear to me during the week that she was so sad that she can’t go to her grandparents house alone for special time, and she knows it’s because of the leukemia. Balancing everyone’s needs in this case seemed precarious at best.

Allison believes that Tanner wanted to come to the hospital and did what it took to get herself here. She believes that Tanner’s world felt very out of control and that she feels safe here as an inpatient. I wouldn’t disagree with that, but I also think we could have a medicine issue as well. There is also a plethora of documented research linking traumatic stress disorder and post-traumatic stress disorder to kids who have cancer. I think Tanner definitely could fall into this category.

The psych team will come in the morning to evaluate her and, hopefully, we’ll know more then. This is, by far, one of the most tormenting things I have ever been through. To not feel like there will be a clear plan for how to deal with her issues. To feel like something we did, or didn’t do, could have exacerbated her problems. To know that we most certainly made some mistakes that may have hurt her. It is agonizing and I wouldn’t wish it on anyone.

I know that I can count on you all not to share this information with your children, who might tell other kids at school that Tanner is having these kinds of problems. Children can be cruel, even unwittingly so, and I would die to know that this blog had caused her any more pain than she is already in. The only reason I share this information is 1) because I know people care about Tanner and want to know how she is doing, and 2) because I feel strongly that the only way to end this *&^%$ing disease is for people to know how awful it really is and be moved to give of themselves to help.

I’ll write more when I know more. We are, as usual, blessed by the wonderful people who come running to our aid when we need it, and do not need anything at this point.

Love,
Beth

Quick Update

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April 11, 2011

Tanner is feeling good today. Her cough is resolving nicely. Going to pick up homework from the teacher so she can keep up with her class. Reading Little House on the Prairie… she’s almost finished. Playing lots of Monopoly and Life. Living in our pajamas and watching movies. Making lemonade as best we can.

Sadly, she is experiencing some side effects from her increased chemo dosage that make us all feel like we’re going back to the beginning of treatment. So heartbreaking for all of us, but especially for her. She is devastated and frustrated and mad. Cancer is wily and evil and is getting in it’s LAST licks before we are finally done with it… but we WILL be done with it… just four more months.

I found comfort today in these words from Elizabeth Edwards. I wish Tanner were old enough to fully appreciate what Elizabeth went through and how resilient she was all the way to the end. It might bring her comfort, too. Amazing woman, that Elizabeth. Amazing child, my Tanner.

“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
— Elizabeth Edwards

Love,
Beth

Making Lemonade

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March 25, 2011

It’s been spring break this week for both Tanner and Jake. Since Tanner had chemo this week, we didn’t go anywhere, but decided to make the most of our staycation by scheduling a fun activity every day.

Monday, we played in the gorgeous spring weather we were having earlier this week (not so much now!) at a playground with some friends. Tuesday, we went to the Tennessee State Museum. They were having an Egypt exhibit, and Tanner is fascinated with Egypt. Turns out, I think we enjoyed the state history even more. Tanner and I have been reading the Little House on the Prairie books, so it was fun seeing the pioneer history fleshed out at the museum. Tanner kept recognizing things like a butter churn or a yoke for oxen that we had read about in the books.

Jake totally cracked us up because he was making up a story for everything he would see, and tell it in this really serious voice.

“Let me tell you about this,” he would say. “This is boat and it’s tied up and the ropes made it not sail right.”

“Was the boat okay?” I asked.

“Nope, it sank to the very, very bottom of the water with the fish,” he said seriously.

Tanner and I started asking him about everything we saw, just to hear what he would make up.

Wednesday was clinic day, but we made plans to see a movie in the afternoon with friends. On the way home, we stopped to get gas and buy some candy for the movies (yes, I realize that’s against the rules). Unfortunately, when I tried to start up the car to go, it wouldn’t. The kids and I got out the car (in the rain of course) and walked across the street to a Firestone and got them to tow my car, and called John to pick us up. I had seriously had it at that point. But, the men at Firestone were so nice and John was, as usual, like a breath of fresh air. He cheered up the kids and resuscitated me with his infectious enthusiasm. “We’re making lemonade, people!” he yelled in the car. “I never get to see you guys in the middle of the day… I love it.” We went home to let the dog out and then dropped John off at work, still on schedule to make our movie… until Anna Lynn called to tell me it was sold out… really.

Now, I was just mad… until I started laughing. I mean, seriously, what else can you do at this point? I had worked too hard to get us to this stupid movie. Thankfully, our friends were game and we found another movie theater playing the same movie an hour later. We prevailed!!! We filled almost a whole row of the movie theater and the kids laughed out loud at the movie.

Thursday, the kids got a much-needed break from one another with separate playdates. Tanner went to a friend’s house and Jake had a friend from school over. Then, Tanner, John and I went to the Leukemia and Lymphoma Society Man and Woman of the Year campaign kickoff where Tanner was officially announced as Girl of the Year along with Jack Woods, Boy of the Year. They debuted the video we had shot a month or so ago. It’s a great video, although Tanner is uncharacteristically shy in it. This was taken not long before we decided that she needed medication for anxiety. You can see her in this video regressing to babyish talk; very unlike her. Just underscores for me that we made the right decision.

In contrast, last night she was working the room, full extra-large personality in play. The event last night was pretty grown up at a nice restaurant and at one point, John and missed her. We thought she was sitting at the table playing with John’s phone. Instead, we spotted her across the room, standing on a chair, talking animatedly to three men, who were laughing and talking back. Then, the photographer asked to take a picture of them. They did one serious shot and then Tanner got them to all make silly faces. John said, “Should we go ask what she was talking to them about?” I paused and said, “No, I think I’d rather not know.”

Here’s the video:

2011 LLS Boy & Girl of the Year from Nathan Thompson – Disegno Video on Vimeo.

And, today, we had big plans to see the marionette show at the downtown Nashville library. The Whitlers were meeting us there and everyone was excited. The kids were playing on computers in the library waiting for the show to start when we figured out they didn’t have a show today (something I did not see on the Website). But Ron Whitler (Tanner Time’s blog host), who is a long-time friend and from the same school of lemons as my husband, didn’t miss a beat and just said, “We’re game for whatever, let’s go to lunch.” So, we went to Margaritaville and had a great time.

So, I want to thank all the people who helped me make lemonade this week, including Tanner, who has been a trooper despite not feeling very well from steroids, and Jake, who never fails to make me laugh. I am truly blessed by the most amazing friends and family.

Love,
Beth

Clinic Day #49

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March 23, 2011

As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).

Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.

After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.

We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.

It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.

Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.

We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.

Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.

Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.

On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.

It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.

I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.

Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.

Love,
Beth

Clinic Day #48

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March 9, 2011

We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.

I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.

Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.

On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.

Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.

After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.

I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.

“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”

Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”

Tanner shook her head again.

“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”

“Yes,” she said with some little tears in the corners of her eyes.

“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”

My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”

By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.

I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.

On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.

Love,
Beth

Clinic Day #47

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February 23, 2011

Just finished completely revamping Tanner’s medication spread sheet. It’s a week- long sheet that keeps John and I straight on morning, noon and night meds as well as her as-needed medications. It’s absolutely necessary. You can’t believe how complex it actually is.

But, today, they raised Tanner’s chemo quite a bit. Her counts were high at 2,200, but we’ve all been battling a cold virus for the past week so I didn’t think much of it. But, she’s also grown quite a bit lately and the chemo is calculated by body volume.

It pained me to give her so much medicine tonight… 19 pills and two liquid meds. I felt sneaky while I was getting it all together… like I was trying to put something over on her. But, what good would it do to tell her that they raised both her chemo and her steroids? It would only scare her. I’m terrified about what this will do to her counts. We go back in two weeks to check them. The middle of cold/flu/strep season is not the time to be neutrapenic.

We also got an additional med today – one we hoped to never have to ask for. Tanner was put on an anti-depressant today to attempt to control the anxiety that seems to be eating her up. She has been so agitated lately, has been having troubled going to sleep at night, doesn’t want to go to school in the morning and just seems really frantic. Together with Tanner’s therapist, Allison, we decided to ask Dr. Mixan, her oncologist, for some help for her. The medicine they put her on will take about 4-6 weeks to reach it’s full potential and they gave us some other meds to use, if necessary, in the meantime.

I have mixed feelings about giving her the anti-depressant. On the one hand, I’m relieved that she is getting something that should help her stop spinning – it’s painful to watch her be so angry and agitated. I think it is damaged her self-esteem to have her behavior so constantly corrected. And, frankly, either she needed to be medicated or someone was going to have to medicate me so I could be more patient. It has been a real struggle the past several months dealing with her. She did go to sleep tonight easily for the first time in weeks, so the drowsiness side effect of the medicine might be a real blessing for Tanner.

On the other hand, this is so far removed from anything you would ever hope for your child… a seven-year-old on antidepressants. It’s scary and disheartening, to say the least.

Putting an IV in Tanner's doll

So, having given all this sobering news, let me just say that clinic turned out to be fun today. We had to wait for long time for meds from the pharmacy so we went downstairs to kill some time and they had medical play in the lobby. The kids got to choose from decorating a little doll in a hospital gown or getting a stuffed animal and playing doctor with some real medical equipment. It’s such a therapeutic activity for both Tanner and Jake, both of whom know way more about medical procedures than any child should. Tanner got really into it and played even more when we got home, which is a healthy way for her to express some of her feelings about receiving so much medical treatment.

...and in Jake's bunny!

After playing doctor for a while, we ate some lunch and had some ice cream, picked up our meds and then came home. It made for a kind of long day at clinic, but I think it’s worth it for the kids to have some good experiences at the hospital to offset the not so good ones.

Please keep Tanner in your thoughts this week. Anytime her meds are increased, it takes a while to adjust and she feels pretty bad for a while. This is the most chemo she has ever taken and the highest dose of steroids, too, so I’m sure she’s not going to feel very well over the next week.

We’ve had some really good moments in the past few weeks, too, but I’ll save those for another night when I feel a little lighter and am not so tired.

Love,
Beth

Spent the Day at the Hospital

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January 5, 2011

As we suspected, we did end up at the hospital today. We made it through the night with no fever, but Tanner woke up with no improvement in the neck pain, coughing and feeling bad. While we were waiting to be seen, I noticed she had developed a lacy rash on her arms and neck. I actually felt relieved about that because it meant that she probably had a virus as opposed to swollen lymph nodes because of reasons I can’t even bring myself to write.

The doctor agreed that she probably has some kind of virus and has tested her for all viruses, but specifically for Epstein Barr and Parvo Virus. Epstein Barr is the virus that leads to monolucleiosis for some people, but not all. Parvo is commonly called Fifth’s Disease or Slapped Cheeks because it can cause red cheeks and is accompanied by a lacy rash. Neither will be a great situation as both viruses are known to compromise bone marrow and can cause anemia. In the normal person, their bone marrow can compensate and regenerate quickly. Tanner’s will not. If she has either of these viruses, her counts will likely drop across the board and necessitate blood and platelet transfusions and bottom out her neutraphils. It would take a while for her body to recover. The results of the virus panels will not come back for a few days.

Waiting for an antibody transfusion

Dr. Mixan decided to give her an IVIG transfusion. This is an antibody transfusion that might help her recover from this virus. The effect of an IVIG transfusion is not proven on ALL patients, but anecdotally, it has helped Tanner in the past. She is almost always low on the IgG antibody, but we usually don’t transfuse until she’s below 400 (600 is the low side of normal for a kid her age). She was at 481 today, but we thought it might help. Unfortunately, it has a common side effect of nasty headaches for a few days. Tanner had one last time (this is her third IVIG transfusion) so I’m waiting for that shoe to drop.

Tanner cried today thinking she might not get to go to Alice in Wonderland rehearsal on Friday night or her first Annie rehearsal Saturday. I’m hoping she’ll get to be in the plays at all.

She cried a lot today. About going to the hospital this morning, about being “sick,” about possibly missing things. She is just so sick of all of this. I want to hug her and comfort her and tell her I understand, but unfortunately, I think it doesn’t help her be strong… and she needs to be strong. We reminded her today that everyone gets sick, not just people with leukemia, and that this isn’t that big of a deal. But, I think she is smart enough to know that when “normal” kids get sick, they don’t have to go to the hospital and have blood drawn and get transfusions. As always, though, she bucked up and is holding it together, at least for now.

Please, please send good thoughts or pray or whatever you do that this is just a bump in the road and not a break down that will cause her to miss lots of school and these plays she so desperately wants to do.

Love,
Beth

Clinic Day #44

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December 1, 2010

Tanner went in for her monthly clinic visit today to get Vincristine in her port. Her counts were high (too high, really) at 3,500. Dr. Mixan doesn’t know why, but per protocol, we will wait a few months to see if she comes back down before raising her chemo above 100%.

Tanner has been to clinic 5 times in the last month. During maintenance, we typically go once a month, but for counts checks, flu shot study and a fever, we happened to be there a lot last month. This morning, she just started to cry when I told her it was time to get dressed for clinic. I hugged her and told her I wished we didn’t have to go and helped her get dressed. We dropped Jake at Aunt Beth’s house and went to the hospital.

The clinic visit went very smoothly, but Tanner kept telling me the whole time that her stomach hurt and she didn’t think she could go back to school. Then, when I thought for a brief time she might make it back for recess, she rallied and was excited to go back. But, when we got in the car, I looked at the clock and there was no way to make it to recess. Tanner started yelling at me in this desperate voice, “Just drive really fast. Don’t stop for lunch. Just get me there… just GET ME THERE!”

I didn’t say a thing. What could I say? I knew it wasn’t just about recess. It was about missing things in general. Going to the hospital to get poked and get chemo while your brother spends a fun filled day at Aunt Beth’s house and your classmates get to go out for recess. Not for the first time, nor the only time. For the 60th or 70th time.

The car got very quiet and I could hear her sniffling in the back seat. I wanted to say something comforting, but I don’t know any more comforting words. I’m fresh out. “Don’t worry, we’ll just be doing this 20 more times or so for 9 more months and
THEN we’ll be done.” Yes, that would be cheerful.

Then, she told me she was sorry she yelled at me and asked me how much longer she would have to do this. “Nine months,” I said, quietly. She just began to cry and said, “I wish I was someone else.”

Again, no words of comfort. She had given up and so had I. It’s just too long sometimes. Too much behind us and too much ahead. She’s doing so well and I know I should be grateful, but I don’t feel that way lately. I just feel tired and ready to not worry about all of this.

I ended up letting her stay home the rest of the day. I just couldn’t muster up enough momminess to encourage her to go back. I’m sad for her, but in this numb kind of way where I seem paralyzed to do much to help.

I realize this post is a big downer, but if I’m being truthful, these days are just as much a part of the journey as the celebratory ones or the tragically sad ones. In between are these numb ones where caring about all of this seems like a lot to ask. Leukemia is an exhausting disease that could wear anyone down. I know we will make it to the end; even on a day like today I have no doubt of that. I know we are strong enough to endure. But, I also know that there will be battle scars that never heal as a result. For all of us. And some days, I mourn those scars and question why this had to happen at all.

Love,
Beth

Why Me?

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August 15, 2010

I’m struggling a little today with “why me?” Why does it feel like just when we’re getting our feet back under us, something else comes along to wash away the very ground under us? Why do we keep having to scrabble back up to dry land? Why should one family have so much to deal with at once?

It’s not that I don’t believe it could be worse… I know it could. But, it could certainly be a lot better, too. Can I get an Amen?

My extended family is at the beach this week. It’s an every-other-year trip that I really look forward to. My parents, brothers, nieces, sister-in-law, aunt, and significant others and the Pages all rent a big house in Santa Rosa for a week in August. Except this year we can’t go. Tanner can’t swim in the ocean and the chemo makes her extra sensitive to the sun, so us going would have been an exercise in frustration.

I love the beach. There is something about that breeze that comes off the water, the salty smell, the sound of the surf hitting the sand… it all makes me feel like I somewhere so far away from home that none of my problems can follow me there. I found myself this morning crying because I knew that even if we had been able to go there this year, our problems would have still followed us. No amount of fresh salt air could have washed away Tanner’s cancer, much less mine. It couldn’t have washed away the year behind or the year to come.

So, I’m stuck in “why me?” land. But, I find that when I ask that question, more good things come to mind than bad.

Why me? What did I do to deserve such an awesome husband? One who puts us before himself every day. One who is unfailingly thoughtful. One who is there like a rock, no matter how bad it gets.

Why me? Why did I get such sweet, funny, spunky, creative, bright, energetic, happy children? One who is brave beyond her years and one who makes his mama smile even on her worst days.

Why me? Who has friends and family like we do? The kind that send a gift card to Panera, or flowers, or a meal, or a pair of flip flops for my tired feet. The kind that just show up when you need them, no matter what time. What a blessing.

Why me? Why did I get the most successfully treatable cancer there is? Why didn’t I get something scarier, like breast cancer? For that matter, why didn’t Tanner get AML instead of ALL? Or be 15 instead of 5 when she was diagnosed? Or be a boy instead of a girl? There are so many ways we have been blessed within our difficulties.

“Why me?” can be a pity party or a revelation. It depends upon how I choose to look at it.
I choose the latter.

I choose this life. The one I have right now with these people in it. With all the surgeries, the hospitals, the doctors, the pills, the cancers, the fear of what may come… I still choose it. This is my life with my family and friends and the good things will still outweigh the bad… if I let them.

Love,
Beth

Clinic Day #38 – What a Day

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August 11, 2010

I had such high hopes for Ativan easing Tanner through the LP today, but it did not turn out the way I had hoped at all.

The day started at about 2 am when Tanner woke with a nasty headache. I gave her some painkiller and she went back to sleep, but woke at 6 am screaming and clutching her head. I had a moment when I was right back to the night of her bactrim reaction; screaming and clutching her head was the last thing she did before going unconscious. I had to fight the impulse to throw her in the car and race to the hospital. But, then I remembered Cari saying something about headache being a possible side effect of the IVig transfusion. The on-call doctor confirmed my suspicions and told us to give her a full dose of oxycodone. If that wasn’t enough, they could give her morphine in the clinic.

Poor Tanner spent all morning with a horrible headache and nauseated. She slept in the car on the way to clinic with a trash can in her lap, and I carried her into the hospital. But, she started to feel a little better… until we gave her the ativan. Oh my.

So, ativan is an anti-anxiety med that has the added benefit of easing nausea as well. It seemed like the perfect choice to use for the LP. We have given it to Tanner before in a pill form and she did great on it. Just knocked the edge off of her. Apparently, the IV version works a little too well on her.

First, I noticed slurring and stumbling. Then, the silliness started. And, finally, the agitation and complete lack of impulse control set in.

By the time we got to the pre-op waiting area, she was just as silly as she could be. When I went up to register her, I noticed someone running… fast… out of the corner of my eye. I turned and it was… Tanner. She was bolting, running from a surgery she desperately did not want to have. She looked crazily gleeful, but turned panic-stricken and terrified when I caught her and tried to get her to let the nice lady put an armband on her. I knew when I heard the woman calling for help for the “child having an anxiety attack” in the lobby, that we were in trouble.

Usually, John and I do LP together. We both like to be there. But, today, John stayed home with Jake and I was solo, which made running down my little runaway, bogged down with a computer bag, purse and a bum neck, darn near impossible. We ended up putting me in a wheelchair with a vice grip around Tanner in my lap as the nurse pushed us to the pre-op area. She was totally disconnected from reality.

Sadly, being disconnected from reality didn’t change the way it all came down in the end. It happened the way it always does, no matter what we do. At the very end, she yelled, “Is that the sleepy milk?” and begged me to hold onto her and not leave her. So pitiful.

The doctors and nurses and I convened afterwards and just decided to give up on the anti-anxiety approach and just go straight at it from now on. If we have to hold her down, so be it; it’s what we end up doing anyway despite all efforts otherwise. They said she is smart enough to figure out every way we try to disguise it.

After she fell asleep in my arms on the table, I laid her down and kissed her and reminded myself that we just have four more of these before August 6, 2011. Just four more.

All the agitation was gone after she woke up from surgery. In fact, when I went to recovery she had the nurses totally cracking up because she was talking a mile-a-minute and being really funny. It took that damn ativan until about 4 pm to really wear off. Never again.

The good news is that she didn’t get sick from the methotrexate injected into her spine this time. She still has the headache though; it hasn’t gone away yet.

Tomorrow is the first day of school. Earlier today, it seemed impossible to think she would make it, but as always, Tanner’s will astounds me. We spent the last half hour before bed packing up her backpack, sharpening pencils and painting her fingernails. She’s ready.

In the retelling, today’s story seemed somewhat funny, but as is most often the case, it didn’t seem that way at the time. It occurred to me this afternoon, that the only difference between today and every other day Tanner has had an LP is that she didn’t have any impulse control today. The impulse to run away must be there every single time for her. Today, she was able to indulge herself and run wildly through the lobby, trying to escape a disease she never asked to get and a fate I would never wish upon anyone, much less a seven-year-old.

Love,
Beth