Category Archives: brother Jake

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

Clinic Day #53 — Counts Check

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April 28, 2011

Okay, so yesterday was clinic day; I just got too tired to write about it. John took Tanner to clinic yesterday morning to give me a little break from the hospital scene. I wish we could give Tanner a break from it, but guess that’s not possible. Her neutraphil count was up quite a bit, at 2,200, but the steroids she had just come off of will artificially inflate neutraphils, so it’s hard to say what it will be once it comes back down, but Dr. Mixan felt good about it in general so we don’t have to go back for two more weeks.

John broke the news about Cari not being Tanner’s nurse any more in the car on the way there. She was very sad, but handled it as well as we could hope.

Hunting Easter Eggs is exhausting!

I’ve had a bit of a break this week. Jake is at my parents’ house and is coming home tomorrow. It’s given me three days by myself in the house for the whole time Tanner is at school. I really needed a little time to regroup and get some things done. It’s been nice to just go at a project without worrying about picking Jake up from school or being interrupted 1,000 times. Thanks to my parents for taking him; he’s having a ball playing golf and being spoiled. Nice for him to get a little break from the stress of our house as well. I miss him though, and am ready for him to come home.

Tanner and I went to a champagne toast at Flemings on Monday for the LLS Man and Woman of the Year Campaign. She didn’t really feel super as it was the last day of her 5-day steroid pulse, but we gamely went out and bought new dresses and headed downtown. I’ve been so proud of her at all these events; she’s really risen to the occasion and showed a lot of grace and poise at what have been very adult events. I think she understands how important this commitment is (and it doesn’t hurt that I’ve bought her a new dress for almost every event!).

People sometimes make the comment to me, “I don’t know how you all do it.” And, most of the time, I respond by saying, “You just put one foot in front of the other,” which is true. I mean, really, what choice do you have, really? But, I was reminded at the MWOY event the other night, that you really are carried through this journey by great friends, family and even people you don’t know who support you and love you through it.

There are 13 candidates for Man and Woman of the Year. Some of them have a personal connection to blood cancer and know first-hand how important it is to find a cure. Some are just caring people who have recognized a great cause and are giving enough of their time and energy to agree to take it on. Either way, they are supporting us and all the other families who have, unwillingly, embarked on the road to beating a blood cancer. Their commitment is an inspiration to me; it makes me realize we are not alone. There are lots of people who care and who recognize that this disease needs to be eradicated before it affects even one more family. To say we appreciate what they are doing is an understatement; frankly I don’t really know to thank them properly.

We spent Easter with our church family... and then John's family

Tanner has been feeling really good lately. The reduced chemo level she is on because of her low counts last month is evident. She’s only on 50% dosage at this point. Although I love that she’s feeling so good, it makes me nervous for her to just be on 50%. I assume if her levels are good next visit, they’ll raise her up to 75%. We’re delaying her next chemo a week to accommodate her Sleeping Beauty shows. She would have had chemo two days before her first show and been on steroids for all three shows. Dr. Mixan was nice enough to let us delay a week until the show is over and school is out so she won’t miss any of the end of school fun.

Speaking of Sleeping Beauty, if you want tickets but haven’t gotten them yet, you can order them by calling the Boilerroom Theatre at 794-7744.

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 #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

Good News All Around

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November 20, 2010

Friday was full of good news. First, I got my scan results… and they were clean!!! I should have posted last night, but I think I was just so relieved, I just wanted it to all go away and not even think about it anymore. They found remnant tissue around my thyroid, as they expected, but the radiation was doing its job in killing that. And, they didn’t see anything else… nothing!!! That’s what I like to hear. Now, to get back to life without all these interruptions.

Second, we found out Tanner got a role in Annie. She will be an orphan named Kate. Talk about one ecstatic child! She threw her arms up in the air and screamed as only a seven year old girl can. Rehearsals don’t start until January, but she’s been singing “Hard Knock Life” for days. Even Jake can belt out a resounding rendition of “Tomorrow” at this point.

Jake scrapping for the ball

Today, Jake had his end of season soccer party at CiCi’s pizza. He had a great team with really nice kids and parents so we had such a good time. The coach gave out trophies… you’ve never seen anyone more proud than Jake. He carried that trophy around half the afternoon with this big grin on his face. The pictures are on John’s phone, but I’ll post some next time. He really was adorable.

On a breakaway

I think it’s just sinking in for me that this latest health debacle is actually over. I think one of the side effects of becoming strong enough to handle what we’ve been through is that you also become a little numb to news – be it good, or bad. It’s like you just brace yourself for the worst and it’s difficult to believe it’s actually good news instead of bad. Even though my cancer has not been hard to deal with physically, it’s been hard on our family mentally. Just the disruption to our lives over and over and, for John and I, feeling like we were kicked when we already down. I just want to be able to move forward with some things, instead of always feeling like we’re treading water trying to keep from drowning. Swimming to shore and standing on dry ground would be a nice change.

Congratulations from a friend

Celebrations all around. Hurray for good news.

Love,
Beth

On Its Way Out

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I think the radiation is definitely on its way out. I feel much better today after several days of mild malaise and fatigue. Even stopped by the house today to pick up Domino and take him for a walk. The walk was tiring, but it felt good to get moving and be outside. I think my friend Kim is going to come home to find a permanent indention in her new sofa in the shape of my heiney. I’ve read two books and watched countless movies and even gotten a few (a very few) things done.

Mostly, I miss my family. John and the kids seem to be doing great, but I know it is unsettling for the kids to keep having me drop out of sight while I recover from the surgeries or now while I am hiding my glow from them. Tanner still doesn’t know I have cancer, but I think she is smart enough to figure out that it’s somewhat serious and it makes her anxious. But, mostly I think they just miss their mommy… and I miss them. Still, I think John has really enjoyed his time with them.

I’ll come home Tuesday. Even though I can’t touch the kids more than 30 minutes cumulatively each day, I can at least be around them by then and I can help. And, I can get hugs, even if they’re quick. That will feel good.

I go back to Vanderbilt Thursday for a body scan to see how effective the treatment has been and determine if the cancer had spread anywhere outside the thyroid. If it had, the cancerous tissue would have absorbed the radioactive iodine and it would show up on the scan. I think I have to lie still for 1 ½ hours (can you say, “Nap?”).

I ended my low iodine diet today at dinner time. John and the kids did a “drive by” and brought me Jets pizza, some candy and a cake in the shape of a turkey that says, “Glow, Mama, Glow.” I laughed out loud. Jake was so cute bringing me the candy. He put it on the ground and backed away from me and said, “You’re done with your diet!!!!” Sweet thing. It killed me not to be able to give him a big hug.

Tanner has her Annie callback tomorrow night. She seems to have gotten over her cold and cough pretty much, so I think her voice is back in singing form. I wish I could go so badly, but I’ll just have to get a report from Daddy.

Thanks for all the well wishes. People have been so nice… as always.

Love,
Beth

All Aglow

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November 12, 2010

I’m aglow… with radiation! I’m sitting on a plastic tablecloth on my BFF Kim’s couch watching the Today show. It’s like a vacation as long as I forget why I’m here. I don’t feel really bad, but I don’t feel good either. I feel like I’ve been poisoned… go figure.

I’m still on the low iodine diet through Sunday to ensure the radioactive iodine absorbs into any remaining thyroid tissue as well as possible. So, Beth is coming over to make us hamburgers with homemade French fries and homemade ketchup. Yum! How does a girl thank friends like these? The thing is, I knew that they would take care of me… it’s just what we do for each other.

John and the kids dropped by last night and rang the doorbell and drove off before I could answer (This is affectionately referred to as the “Ding Dong Ditch” in the South). They left funny gifts the kids had picked out… a reindeer antler headband and a “Do Not Disturb” eye mask! Too funny!

Yesterday was surreal, but a little anticlimactic. No hazmat suit for the lady who gave me my RAI pills (I feel ripped off), just gloves. But, the pills themselves came in a space age looking metal canister. When she opened it, the metal was 2 inches thick and there was a very small indentation inside with a small plastic vial in it. The pills were in that vial and I had to take them without touching them (apparently it’s okay to touch them with the inside of your body, but not the outside!). Then, after I took them, a guy came and measured me from one foot and three feet away with a radiation detector to determine how radioactive I was. Apparently, everyone is different depending upon body mass (this is the one time it would have paid to have been more overweight than I am). Then, they write your contact precautions based on those measurements.

So, no closer than three feet from someone for me and six feet for kids or pregnant women for at least three days, but our doctor suggested we go seven days for that precaution. Even after that, I’m not allowed to have direct contact with the kids for more than 30 minutes a day for the next 16 days. Bummer. I’m going to miss cuddling with my babies so bad. But, I can get out more than I thought. No reason I can’t run to the video store or grocery during off hours when there aren’t a lot of people.

I feel like I’ve hijacked this blog… it is called Tanner Time, after all. So, here’s how Tanner’s doing. She’s having a somewhat hard time handling this extra chemo load. I think we had gotten spoiled being on 50% chemo for so long and now she’s on 100%. She missed school Monday and Wednesday. She just didn’t feel good. And, she’s fighting some kind of cold. Jake had a mild case of croup this week and missed school, so it’s been a little nuts this week.

Tanner auditioned for an orphan role in Annie last weekend and did so well. She has a callback this Monday and is so excited. It was a leap of faith for John and I to even let her try out because the rehearsal schedule will probably be a little tiring, but we just felt like it was something she wanted so badly that it was worth it. I was so proud of her for doing so well at the audition; she had just had that big dose of chemo and was on steroids, but she still got up there and gave it her best. Hope her cold clears up by then.

I think if nothing else, I am gaining a new respect for Tanner’s resilience. She has pointed out to me several times over the last few weeks that I am just like her – I can’t eat what I want, I have to stay away from people and I have a yucky taste in my mouth that changes the way food tastes. And, now I feel bad like she must have so often over the last year-and-a-half. I’m having a mini-dose of her life. Wow. I respect her even more. She doesn’t complain often and now I realize she really could. I have to say if I woke up one morning and felt like this, I would call in sick to work, but I think she goes to school like this some days. Strong kid, that girl of mine.

Thanks for all the well wishes; I’m doing just fine.

Love,
Beth

Trick-or-Treat

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Wow! What a difference a year makes. Last year, Tanner had just been released from the hospital at 1 pm on Halloween after a 10-day stint for pneumonia. She had lost all her hair while in the hospital and had come home with her port accessed so we could give her IV antibiotics around the clock for the next few days.

This year, no worries. She is full of energy and has beautiful new curly hair and looked adorable as Alice in Wonderland. She and Jake had so much fun trick-or-treating. Our neighborhood was FULL of trick-or-treaters which always makes for a good time.

We’ve had a great weekend. Nothing special, just simple fun playing with neighbors and hanging out at home. I’m on day 4 of my low iodine diet. It’s a little repetitive and limiting and with no dairy allowed, I’m missing creamy stuff. But, I think I’m losing some weight, so there’s that silver lining you can almost always find!

The worst part of the diet is no chocolate or red dye #3, which pretty much eliminates all candy… on Halloween! It almost didn’t seem like Halloween without the candy coma.

Tanner will have to miss three days of school this week because they are offering the flu mist Tuesday, which is a live virus and Tanner can’t afford to be around a large number of people with that vaccine in their system. Dr. Mixan said three days. Wednesday is clinic day and she will have the dreaded LP. We’re forgoing all anti-anxiety meds this time. I’m going for bribes — silly bandz????? We’re also going to sit down with her and let her plan HOW she gets the sleepy milk. Does she want to lie on the table or have me hold her or sit in my lap. What does she want them to say before they give it? Or, does she want to count to three before they give it? Does she want music playing? What does she want to eat or drink when she wakes up? I think giving her control of what we can will help her feel less helpless. We’ll see.

Hope your Halloween was spooky and happy!

Love,
Beth

Why Don’t I Have Cancer?

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October 18, 2010

As I was explaining to Jake this morning that Tanner needed a pink pill (Pepcid) because she has cancer, he innocently asked a question I really didn’t expect. “Why Don’t I Have Cancer?”

It broke my heart. See, he wanted one of those pink pills, just like he wants to get some of the gifts that Tanner gets (like the pink guitar), or the doctor that Tanner has (“I want to go to Dr. Mixan”). At 3 ½, Jake is just old enough to get that he’s not getting some of the things that Tanner is getting without understanding that he’s also not getting some of the things that Tanner is getting, if you get my drift. In other words, he sees that she has some “privileges” that he doesn’t, but doesn’t understand the price she pays for them.

So, now, my healthy little boy wants to have cancer, too. He’s too little to know you shouldn’t tempt fate by wishing for cancer in this family!

It was easier on Jake when he was too young to notice the special treatment Tanner sometimes receives (or what looks like special treatment to him). Jake was 2 when Tanner was diagnosed and was oblivious to all that. But, now he is just old enough to understand special treatment, but not old enough to understand that some of what looks like special treatment (clinic visits, medicine, extra hand sanitizing) is really not so great. I think he even envies her getting her port accessed.

And, just when I think he is completely jealous of her, I watch him be so supportive and sweet and think maybe he does get it. Last week, while Tanner was at school, we were riding in the car and I had an empty soda can in the cup holder. Jake said, “Mommy, give me the can so I can take off the pop top for Tanner… she will be so happy.”

It’s a difficult thing to manage… her needs versus his. How do you assure that she gets enough special treatment to make up for the medical treatments, teasing at school, missing out on social events and just feeling “different,” but not so much that it makes Jake feel like a second-class citizen? It’s just another element to the difficulty of having a child with a life threatening disease.

Tanner has had a somewhat difficult week or so. My “Mommy Radar” tells me something is going on and I am anxious to go into clinic on Wednesday for a counts check. She just doesn’t look good and her energy is not at its usual uncanny level. I actually took her to the pediatrician on Wednesday for a quick counts check, but all her levels were fine. There are a lot of kids at school sick with strep and some other viruses and I was worried about that. She looked pale and was complaining of shortness of breath and headache, both signs that her hemoglobin could be dropping. Thursday night, she came down with a stomach virus and was up all night vomiting. I thought surely she had strep, but she never got a fever or sore throat and was feeling better by Sunday. Now, tonight, she has a really bad stomachache that had me thinking we were headed to the ER. Tanner definitely knows what real pain is and she was showing me all those signs. I gave her a little painkiller and she has gone back to sleep, but all the same, I think I will sleep in her room tonight.

Even with all of this going on, we have managed to fit in lots of fun. Roller skating parties, gymnastics parties, S’mores with the neighbors, Gentry’s Pumpkin Farm, a Civil War reenactment battle, and so on and so on. It’s fall break and we’re headed to the zoo in the morning with friends for our last day of fun before school starts again.

I’m afraid on Wednesday that her counts will be so low, we’ll have to pull her out of school and other activities. It will be devastating to say the least.

It’s more than one mother or father can worry about some days. The kid who asks, “Why did I have to get cancer?” and the other who asks, “Why don’t I have cancer?” It’s a rock and a hard place for sure.

Love,
Beth