Category Archives: Dr. Mixan

Clinic Day #55 — Goodbye Dr. Mixon, Hello Carie

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June 15, 2011

Today was our last day to see Dr. Mixon at clinic. Before we left the house, Tanner wrote him a little note that said, “I love you Dr. Mixon and I will miss you.” Then, she taped a squinkie to it and gave it to him with a big hug. He’s been such a big part of this journey for us that it was hard saying goodbye.

Jake, Tanner and Ali, petting Eli

BUT, we did have a great surprise! After having a little reunion in the lobby with Lily and Ali and parents, we found out that nurse Carie was working in the clinic today. Tanner was so happy! We got to catch up with her and show her pictures of Tanner as Sleeping Beauty. We also got to see Eli the three-legged dog. It was a great clinic day made even better with the knowledge that we have only one more of these clinic days and then we are done with them!

Tanner’s counts were good – too good, really. Her ANC was 2,600 so they raised her chemo a little bit, but not much. We’re short-timers after all.

This afternoon, we went to Sweet CeCe’s to say goodbye to a little girl that’s been in Tanner’s class the past two years and is moving tomorrow. She ended up coming home with us to spend the night – both Tanner’s and Stella Claire’s first sleepover. I’m writing this from Tanner’s room right now. They wouldn’t stop giggling and talking and it’s 10:30 so I’m trying to get them to sleep. Of course, I think Stella is asleep, but the kid who had chemo today is wide awake. Go figure.

Tanner finished theatre camp last week with a great show on Friday and found out today that she got the part she wanted in Joseph and the Technicolor Dreamcoat – she is one of the narrators. Jake’s still playing baseball and loving it and we have vacation bible school next week. It feels like summer and without the pressure of school, all of Tanner’s anxiety issues feel like a distant memory. We’re headed to the smoky mountains for a family vacation in a few weeks and just plan on having a relaxed and fun July before school starts again in early August and Tanner finishes her chemo on August 6. We’re in the homestretch and I can feel it. It finally feels real and reachable.

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

Clinic Day #52 — a Colossal Mistake

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April 20, 2011

Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.

Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.

We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?

Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.

We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.

Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.

I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.

Love,
Beth

Counts Update

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April 6, 2011

Tanner’s counts finally came in late last night. Her neutraphils are 390, which is better than we feared, but still severely neutropenic. Dr. Mixan called this morning and her IgG level was also low (that’s an antibody associated with respiratory immunity). So, we’re headed to clinic this morning for an IVIG transfusion. We’ll also hold all chemo until next Wednesday when we’ll go in for a counts check and see where we are. No school and neutropenic precautions until her counts are back up.

Tanner slept really well last night and feels good this morning, although she is still coughing. The IVIG transfusion might help her kick the virus she is fighting so we’ll hope for the best.

Glad the waiting is over… I hate waiting. Thank you for all the prayers and good wishes.

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!

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January 8, 2011

Dr. Mixan called with great news. Tanner tested positive for rhinovirus and enterovirus, both of which are very common respiratory/cold viruses! Hurray! She was able to go to Alice in Wonderland rehearsal last night and her first Annie rehearsal today… she’s in heaven.

She also never got a headache from the transfusion… amazing. None of the bad things that could have happened, did… that’s refreshing.

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

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