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

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.


Clinic Day #53 — Counts Check

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.


Clinic Day #52 — a Colossal Mistake

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.


Clinic Day #38 – What a Day

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.


Clinic Day #31 — Or, How to Have Fun at Clinic

April 8, 2010

So, here’s how you have fun at the Vanderbilt Children’s Hospital Oncology Clinic:

1) Have counts high enough to still go to school, but not high enough to raise your chemo level (her neutraphils were at 1,100, down 200 from 2 weeks ago, so she’ll stay at 75% for now)

2) Make friends with the music therapist who is holding a music session in the infusion room. Get her to play your favorite Miley Cyrus and Taylor Swift songs on the guitar so you can have a solo that makes everyone in the room clap. Tell her some other songs you like so you can plan to sing again next time.

3) Participate in a study that helps other people and get money from the doctor so you can buy ice cream downstairs.

4) Discover they are having a “medical play” clinic downstairs in the lobby and color your own “patient” doll which you can then give shots, access her port, set up an IV drip and generally use all your medical knowledge you have gained in your more than 50 visits to the hospital.

5) Get to see Dr. Mixan and Nurse Cari – our favorites

It was, hands down, the most fun we have had at Clinic. It is a testament to Vanderbilt Children’s that it is possible for a place that holds so much sorrow for so many is also the place that holds so much hope and light. We are forever grateful to have this community treasure so close by.

We’ve been on Spring Break all week and having a great time! We’ve been swimming twice, eaten out some, played in the yard and in the cul-de-sac a bunch, had playdates and now, E. (John’s Mom) is here! Tomorrow, we are hosting our church playgroup at our house and having a visit with Allison, the play therapist, in the afternoon. We’re hoping to get to the zoo this weekend to round out our super fun week.

Got some really fun news recently that Tanner is going to be one of the faces of this year’s local Light the Night, which is the Leukemia and Lymphoma Society’s big fundraiser. Tanner’s picture and story are on the invitation being sent to corporations to invite them to a kickoff breakfast. She is also going to be featured in the Country Faces Cancer campaign where country celebrities, like Blake Shelton and Nan Kelley, host walk teams for Light the Night. Tanner will have her picture taken with all the celebs who sign on and be in the TV public service announcements. She will LOVE this! My girl loves her some attention and loves anything to do with music.

So, we’re hanging and enjoying the week off. With her counts down to 1,100, we might rein ourselves in a bit to try to protect her, but overall, the doctor feels good about where she is. During maintenance, the goal is for her counts to be between 1,000 and 1,500, so she is right where she should be, although I’d always prefer to be on the high side, rather than the low.

Hope you’ve been enjoying the beautiful weather, like we have.


A Setback

February 2, 2010

I spent most of yesterday trying to convince myself that my glass is half full. It is. I know it is. But, there are times when it is harder to remember than others.

Lurking in the recesses of our recent good news about school was a cold Tanner was fighting. Yesterday morning, she woke up with her ear hurting. Rather than drive all the way to the hospital, I ran by the pediatrician’s office. They were awesome. They took us right back so we didn’t have to wait in the germy lobby and, of course, Tanner had an ear infection. They have been a long-standing problem for Tanner.

Our pediatrician called our oncologist, Dr. Mixan, who said he wanted Tanner to have a Rocefin shot in addition to oral antibiotics. Rocefin is a broad-range antibiotic that Tanner typically gets through her port any time we go to the hospital with a fever. “A shot?” I repeated. “What kind of s-h-o-t are we talking about here?” Not pleasant, she said. Tanner has a huge issue with shots, but has no problem getting a big needle put into her port in her chest (go figure) so we decided to go to clinic and get the antibiotic via her port. It took longer, but saved us a lot of trauma, screaming and holding her down.

It was a good thing we went. Her counts had dropped across the board. Her neutraphils dropped to 960 from 3300. Which, of course, means back on the restricted diet and no school until they go back up. Tanner cried. She had wanted a salad for lunch so badly. They did a chest x-ray, which we never heard any results on so I assume it was negative.

It’s hard for good news to be so fleeting. For the celebration to constantly be in so much jeopardy. I found myself wishing we had not made such a big deal about going back to school or about being able to eat whatever she wants. Less disappointment that way.

I think my disappointment must have been very visible. Tanner’s nurse, Cari, said gently, “It’s just an ear infection, Beth. She’ll get over it quickly.” And, she’s right. It could be so much worse. I had a pep talk with myself in the car on the way home. This is a long journey and I had no right to expect it to be smooth at this point. I can’t allow myself to be tired when there is so far to go. If I expect Tanner to keep fighting, I have to keep fighting.

So, it took all day (and I mean ALL day) to get to see the glass half full. It is. She’s alive and that, alone, is everything to be thankful for. But, more than that, we have joy. Even if it is fleeting, it is worth having. Living to avoid disappointment is not living at all and that would be a disservice to the fight that she is fighting.

She is not feeling real great this morning. It’s the last day of steroids (hurray) and that’s never a real great day for her. Add the ear infection and she is pretty miserable. We’ll lay low and, hopefully, wait for another celebration to come.


Clinic Day # 26

December 31, 2009

Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.

Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.

Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.

While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.


Clinic Day #25

Tanner and I waiting for Jake's Christmas program to start

Tanner and I waiting for Jake's Christmas program to start

December 17, 2009

Hitch up the sled, we’re flying to Christmas!!!! Tanner’s neutraphil count today was 2,750!!!! That’s even higher than it was 2 weeks ago! We were given the all-clear to go to John’s Mom’s tomorrow and to my parents’ next week. We don’t even have to go in for counts next week! Hallelujah!!!!

Tanner and I high-fived and we hugged nurse Carie and then she forbade me to cry happy tears. When we got out of clinic, we skyped John from the hospital lobby; he was at our church with our Children’s Minister and we told them the happy news. You have no idea how I am breathing a sigh of huge relief not mention joy at being able to spend the holidays among family!!!

After hearing the good news, Tanner and I ran for the hospital pharmacy to fill a few prescriptions, grabbed a bite to eat while we waited, and drove at breakneck pace to get to Jake’s Christmas Program at school at 11 am. Thank you Sissie for holding the program for us (we were a few minutes late!). Right when we got there, Jake’s class came in. We were really worried that Jake would pull a repeat of last year’s performance. Last year, he made it through the back door of the church, saw us, burst into tears and refused to participate any further. So, we snuck in the back and hid ourselves from view. No worries… he was a jingle belling maniac! He came into the back door and bolted to the altar where he stood, ringing his bell and waiting for the rest of the class to catch up to him. He stood there, not singing, but ringing his bell with a huge grin on his face. Then, he saw John who had snuck up the side to take video (It’s hard to hide, when you are as tall as John is). He must have yelled, “Daddy!!!” five or six times during the performance and even made some weird noises and funny faces that had the crowd laughing. Tanner and I giggled hysterically. It was such a treat for her to be able to participate in something like that. She was really proud of him and even got to see a few friends.

Jake and Ms. Julie singing Jingle Bells

Jake and Ms. Julie singing Jingle Bells

Amongst our great happiness today, there is one tiny bad thing (why does there always have to be a bad thing?). If her counts stay this high over the next couple of clinic visits, they will have to up her dose of chemo. Not really what we want, if you can imagine. She’s at a 100% dose right now and they can up it to 125% at max, I think. I really don’t relish the idea that she could take more chemo, but they want her counts to stay between 1,000 and 2,000 to assure that they are affecting any leukemia cells that might try to make a comeback.

But, we will cross that bridge when we come to it. Right now, we will joyfully pack, clean the car and get the oil changed, wrap last minute presents and make a cheese grits casserole before we pile in the car tomorrow headed for Jackson, TN. We’ll be back on Saturday night in time to light the advent candles at church on Sunday morning, regroup (do the laundry) and repack to head for Atlanta on Wednesday.

Thank you to everyone who prayed and send well wishes. And, thank you God for recognizing that we couldn’t take any more disappointment.


Clinic Day

Tanner "resting" after treatment today

Tanner "resting" after treatment today

July 23, 2009 Another clinic day. Another spinal with chemo. Is it weird to say, that all things considered, it was a really good day. Tanner loves the nurses, especially Carie, her favorite. John and I love Lee, our recovery nurse who checks the roster every day to see if Tanner might be coming in so she can request her. In a strange way, it’s like seeing our cancer friends every Thursday, and today we met a new one.

John had an intern at Franklin American whose brother has T-cell ALL. He sent John a link to his Caring Bridge site and reached out to us to let us know he understood what we are going through. Today, when we were in recovery waiting for Tanner to wake up, a sedated teenaged boy was wheeled in next to her. John kept looking at him and pulled up the Website for his friends’ brother and, sure enough, it was him. Childhood cancer is a small world… thankfully.

We never got to meet Thomas; he was still under when we left, but we did meet his mother and she is amazing. Six children (that alone makes her my hero) and he is her next to youngest. They are fighters, for sure, though. A tough crew that I know will leave cancer wishing it had picked someone else.

Tanner’s counts today were pretty good. Her platelets, which for some reason were triple the normal amount last week, were down to only double normal today. Her hemoglobin was up a little bit, which helps her energy level (although it really hasn’t needed any help lately!), and her neutraphils (the big infection fighters) were down from 2200 to 1400, which is still good for a kid with leukemia. We have learned that even though her counts have been really good so far, they are still all over the place from week to week, just evidence of the power of the chemo. It’s easy sometimes to think she’s totally fine since she’s been feeling so good. I find these numbers we hold our breath over every week to be sobering; they serve as a reminder that despite the way it looks, her body is still under tremendous strain.

We are only one week from finishing Consolidation, our second phase of treatment. No surgeries or extra chemo next week; we just go in for a blood count (now, that’s what I call a break!). She’ll continue to take the 6-MP, which is an oral chemo, every day for the rest of the next week. Then if her counts are still okay, we’ll start Interim Maintenance the following Thursday. We will only have to go to clinic every 10 days for the two months of this phase, but she will get the dreaded Vincristine every visit in addition to IV injected Methotrexate. Thus far, she has only had methotrexate injected into her spinal column, so we don’t really know how this chemo will effect her when it is injected into her bloodstream.

The physical therapist is coming back tomorrow, hopefully, to go over the at-home program she has designed for us. And, next week, John and I have an appointment with a counselor that specializes in play therapy. Hopefully, she can help us and Tanner learn some constructive ways to let go of her anger. She was an angel today, of course, since we called a therapist!

Jake spends every Clinic Day with Aunt Beth. When we leave in the morning, he happily shouts, “Bye Mommy, Daddy, Tanner. Happy Day at the hospital!,” from the breakfast table. He doesn’t care in the least that we are leaving him; he is going to Aunt Beth’s house where there is a pond, geese, cats, a garden, peppers to pick, flowers to plant, and various other fascinating activities that he doesn’t have at home. Thank you, Beth, for making Thursday’s my son’s favorite day (and for folding my laundry!).

Check out Jake's wheels at Aunt Beth's house

Check out Jake's wheels at Aunt Beth's house

Hilariously enough, Tanner had a hard time going to sleep tonight. Before leukemia, Tanner never napped; if she did, she wouldn’t be able to go to bed until hours after her bedtime. Tonight, after she had come out of her room for about the 10th time after going to bed, I said to John, “Do you think being sedated during surgery is like a nap for her?” Unbelievably, we agreed that it must be. You gotta love the unstoppable nature of our girl.