Monthly Archives: April 2011

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

Clinic Day #51

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April 13, 2011

We got to meet Champ at Medical Play!

We really didn’t expect Tanner’s counts to come up to 1,000 or above today. Generally, counts below 500 take a while to come back up so we were genuinely surprised when Tanner’s neutraphils came back at 1,040 today!!!

I told Tanner, we high-fived in celebration and then she immediately asked, “Can I make to school for recess?” Too funny.

We missed recess, but we did high-tail it back in time for her to spend the afternoon happily at school. At pick-up, she bounced to the car with a big smile on her face and asked if we could play outside when we got home… which we did.

We got to see one of Tanner’s all-time favorite nurses today, too! Blaire was Tanner’s ER nurse that first touch-and-go night when she was lifeflighted to Vanderbilt two years ago. Then, she happened to also be our nurse when we first heard in the ER that Tanner probably had leukemia. Traumatic situations make for tight bonds. Blaire is now a advanced practice nurse in the ER ICU, so we haven’t seen her in a while (thankfully). We loved seeing her; she still keeps up with Tanner through Tanner Time.

Tanner and Blaire in 2009

So that’s the good news… here’s the part that keeps me from celebrating too much, though. We started back at 50% chemo dosage today and go in next Wednesday for her monthly IV Vincristine and a lumbar puncture with methotrexate… her Final Spinal. No rest for weary bone marrow, I tell you. Makes me a little nervous to pile so much chemo on as soon as her counts recover, but this is how cancer treatment works. You don’t stop for much of anything. Call us cautiously optimistic.

Many of you have been asking about Sleeping Beauty tickets. They went on sale today. You can get tickets by calling the Boilerroom Theatre in Franklin at 615-794-7744. The shows are on Saturday, May 21 at 3 pm; Sunday, May 22 at 7 pm; and Monday, May 23 at 7 pm. The theater is tiny (holds about 120) so call quickly for tickets. You’ll want to arrive at the theater ½ hour before to get a good seat. I must ask, for fear that we might sell out the theater with Tanner fans and some poor parent might actually miss her kid in his premiere, for you to please consider one of the evening shows. The matinee is very popular with families.

Thanks to everyone for the good mojo!!!!

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

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 #50 — unexpected

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Clinic Visit #50 – Unexpected

April 5, 2011

Tanner has been coughing for what seems like months. She does have a “habit cough,” which is just what it sounds like, a habit. But, she has also struggled with viruses or allergies or something that has caused congestion and extra coughing. She took antibiotics for two weeks last month for a sinus infection and we thought we had it licked, but this weekend, she started coughing again with a vengeance.

When she woke up yesterday morning, she wasn’t coughing and I thought maybe it had been allergies and sent her to school, but got an email from the teacher saying she had coughed all day and it didn’t sound like her regular cough.

We got up this morning, dropped Jake off at school and Tanner and I headed into clinic to check it out. When we got there, the doctor couldn’t see us until later in the afternoon, so we trekked back home and came back again later with Jake in tow.

Thankfully, her lungs and ears were clear, so they just suspect a virus of some kind, but when her counts came back, her total white cell count had dropped by 2/3 from just two weeks before and her hemoglobin was down lower than it has been in almost a year. The machine count did not pick up any neutraphils at all, which can either be a mistake or mean her neutraphils are wiped out. Neutraphils are the big infection fighting white cells and without them, you have no real immune system. They’re doing a hand count on her neutraphils and as of yet, haven’t gotten the results yet. So, we held her chemo tonight, just in case and have holed up in the house assuming the worst for now.

I checked Tanner’s lab results for the past year and half and her white cells haven’t been down to 1,000 in more than a year. When they were that low, her neutraphil count was 130… severely neutrapenic. So, it doesn’t look promising.

She hasn’t been neutrapenic in such a long time. We’re really lucky we’ve had such a good run, really. But, it does mean she can’t go to school or anywhere, really, until her counts go back up. No real contact with anyone unnecessarily. No fruits and vegetables that can’t be peeled. No fresh flowers in the house. There’s more, but I honestly can’t remember… it’s been that long. I’ll have to read my handbook from the hospital to be sure we’re not doing anything stupid.

Anyway, hopefully, the virus will pass without any other infection and her counts will come back up without the chemo to suppress them. But, it would not surprise me if she got a fever and we had to go back. Sigh.

I’ll post again tomorrow when we know for sure. Meanwhile, I’ll leave you with this parting photo of Tanner and Erin Stryker who was Tanner’s Wish Coordinator for our Make a Wish trip to Disney last year. Erin has become a dear friend and she never ceases to amaze me with her dedication to helping others. In addition to volunteering for Make-A-Wish, she also runs marathons for Team in Training, the LLS’ fundraiser. She came to the Light the Night Awards with us last week and the picture is of she and Tanner standing on the famous “circle” at the Grand Ole Opry, where the event was held. Tanner about fainted when we told her Taylor Swift had stood on that circle many times before. “What about Dolly Parton?” she asked, wide-eyed. “Yes, Dolly Parton too.” Priceless.

Love,
Beth