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.

Love,
Beth

Clinic Day #30… A Sigh of Relief

March 23, 2010

Every parent of a child with leukemia lives and dies by blood counts. We wait, tensely, for counts to come back after blood draw. We search the doctor’s face for a sign that counts are good or bad. Will they mean freedom or isolation? Will they mean a blood transfusion? Will they show something worse, something unimaginable?

Today, Tanner’s counts were perfect… in leukemia world, that is. Her neutraphils (big infection fighting white cells) were at 1300 (they want her between 1000 and 1500). Her hemoglobin was 11.2, which means that, for the first time in a long time, Tanner is not anemic.

Dr. Mixan and I agreed that she is probably suffering from allergies, not a cold. So, with no further ado, she got her chemo and I took her to school for the rest of the afternoon. Then, she had a playdate with some friends at our house.

She’ll go to school again tomorrow in the early morning, but I’ll take her out for an hour or so to go see the play therapist. I asked Tanner if she thought she needed to go see Allison and she said, “Yes, Mom.” There have been a lot of adjustments lately with the house and starting school. They are good things, but they are new nevertheless, and probably a little overwhelming at times. A playdate with Ms. Allison is the best medicine for Tanner’s anxiety.

Please continue to pray for Samantha Abbott – the cutest little girl who just went through a bone marrow transplant and has battled kidney failure successfully only to come down with a very serious blood infection. The medication to cure this infection is very hard on the kidneys, so it has presented a dilemma for the doctors.

Every time I think we have it bad, there is always someone who has it worse.

Love,
Beth

Clinic Day #29 — This is a good one!!!!

March 12, 2010

So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:

Dr. Mixan: “Her counts still look good. Her ANC is 2100.”

Me: “Oh, good.”

Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”

Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”

Dr. Mixan: “Yes.”

Me: “Really?”

Dr. Mixan: “Really.”

Me: “Really?”

Dr. Mixan “Really.”

Me: “REALLY?!!!”

Dr. Mixan: “REALLY!!!”

Me: “Tomorrow?”

Dr. Mixan: “Why not?”

This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.

So, she’s going to school this morning… for the first day… about 7 months late.

Wow. I’m speechless.

Love,
Beth

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.

Love,
Beth

Christmas Has Arrived!

December 2, 2009

I’ve been having a hard time getting in the Christmas spirit. Our tree is up, but is not decorated. We still have pumpkins on the front porch. I haven’t bought even the first Christmas present.

But today, Christmas came to us. My friend, Pat, had sent me an email several days ago saying a surprise would be delivered to us one morning this week. This morning, I got a call from a man saying he had a special delivery and would be to our house shortly. I told Tanner there was a surprise on the way and she and Jake were glued to the front windows asking me every 2 minutes when the surprise would be there.

Within 10 minutes, a black pick-up truck pulled up to the house with a special driver… Santa Claus was behind the wheel!

I yelled to Tanner, “It’s Santa in the truck!” Tanner and Jake began screaming and we opened the door to watch him as he came up the walk in the drizzle and brought us our sopping newspaper out of the yard. I think I was every bit as excited as the kids.

We invited Santa in and he hugged Tanner and then picked her up and carried her to the couch where they began talking about what she wanted for Christmas. Jake was a little leary at first, but warmed up pretty quickly and I was able to take pictures of them both on Santa’s lap after Jake told him he wanted a motorcycle and Tanner told him she wanted an American Girl doll.

IMG_1310We spent about 10 or 15 minutes with Santa before he had to go tend to important seasonal business. He hugged Jake and Tanner and told him he loved them. Then, he turned and hugged me. I felt the Santa magic… really. As we embraced, I whispered in his ear, “You have no idea what this means to us. I never dreamed we would be able to take this picture or that she would be able to sit on your lap this year.” Santa pulled back and held me by the shoulders and said, “That’s why I came; because I knew you couldn’t come to me.”

I cried, of course. And, Tanner got embarrassed and told me to go away if I was going to cry! We stood on the porch waving and yelling, “Merry Christmas, Santa!” as he drove away.

Just days before, Tanner had asked me when we were going to sit on Santa’s lap. I hesitated, trying to find a gentle way to prepare her for the fact that we probably weren’t going to get to sit on Santa’s lap due to the crowds. I started by saying, “We’ll have to ask Dr. Mixan about that,” but I didn’t have to finish. She already knew. She paused a moment and then said, “I have an idea, Mom. You take Jake to sit on Santa’s lap and he can give Santa my list.” She wasn’t overly upset about it; and that’s what broke my heart. She didn’t even expect to be able to sit on Santa’s lap this year. It was like she knew already that this kind of thing just wasn’t going to happen for her.

IMG_1308I don’t have to open any of my presents this Christmas to know that this will be my favorite Christmas gift. Christmas came to our house. Not on a snowy night in a sled pulled by reindeer, but in a black pick-up truck in the rain.

I could assume that my friend Pat told Santa we needed a personal visit this year. But, I prefer to think that Santa already knew and just asked Pat to call us to let us know he was coming. Either way, it was magic.

Love,
Beth

Clinic Day #18

October 14, 2009

We had a smooth day at clinic today. Tanner was totally nonchalant about having her port accessed and we actually had a pretty good time joking and visiting with all the nurses, doctors and the childlife specialist.

She got a dose of Vincristine and her last dose of Doxirubicin (red chemo, as Tanner calls it), thank God. She handled it really well, though, and was definitely not as sick this afternoon as she has been before. It seems like she acclimates to the chemo over time and it has less and less effect each time. She was very tired, however, at bedtime and her right leg is hurting her, so she was limping.

The biggest blow today was the doctor telling us we could not get a new dog any time soon. He wants us to get several months into long-term maintenance before introducing a new animal into the house. We were under the impression that puppies were the real issue and so we had begun to look at year-old dogs from rescue. Looking for a dog was a great distraction for all of us… it gave us something to think about besides cancer and something fun to look forward to. Tanner was pretty bummed and the doctor said, “You can hate me for it, Tanner; it’s not your Mom’s fault.” She just looked up and him and smiled and said, “I won’t hate you, Dr. Mixan, I’ll just hate the leukemia.”

I think I’m the most bummed of all. I was really looking forward to getting a new dog and I’m just mad that this stupid disease takes and takes and takes from us.

On a more positive note, the Great Pumpkin visited our house today while we were at clinic and decorated the front of our house for Halloween complete with a ghost, spider webs and giant spiders. Thanks, Aunt Kim… we know who you are! Tanner and Jake loved it.

I’m wiped out. I don’t know why clinic days, no matter how smooth, make me so tired. Something about seeing all those little pale faces and bald heads exhausts me. It’s just not fair and it never gets any easier for me to realize how many kids there are with cancer. Some look so sick it just breaks your heart.

Good grief, time to go to bed. This post is getting depressing.

Love,
Beth

A Milestone Clinic Day

September 17, 2009 Today was Tanner’s last treatment in Interim Maintenance, the third of five phases of treatment for ALL! A milestone, for sure. My Mom and I were saying on the phone that this phase has gone quickly, I think in part, because we were on a 10-day cycle instead of a 7-day cycle, and also because Tanner has handled it so well. We now have two weeks before the next phase begins — Delayed Intensification — from the looks of it, and from everything I have heard, the hardest phase.

Tanner’s neutraphils (big, infection fighting white cells) were still up around 3,500 this time (normal is 4-10,000), which is very high for a kid on chemo. No one can explain this to us, but we’ll take it. As I suspected, her red counts have dropped. Her Hemoglobin (red cells that carry oxygen throughout your body) was a little above where they would give her a transfusion. They said she could get one, since she is experiencing symptoms of low red counts, but we decided to wait and see if her body would bring it up on it’s own. We’ll go in for counts only, no chemo, again next Thursday to check and will keep an eye out for increased paleness, fatigue, shortness of breath and headaches in the meantime. All these are signs of anemia, and while Tanner has been consistently anemic since being diagnosed (most leukemia kids will be), dropping below a certain level will necessitate a transfusion.

It was a hard day for both of us today. I think having to go to the hospital every week for these exhausting days is just getting really old. After having been such a pro about having her port accessed last week, Tanner had a mini-meltdown about it today. I stepped out in the hallway and let her favorite nurse, Carrie, handle it, which actually seemed to help. They worked it out. But, then, Dr. Mixan told us she would have a flu shot today. I know a flu shot should be no big deal to a kid who goes through what she goes through every week, but shots have always been a big traumatic experience for Tanner. Today was no different and three of us had to hold her down to get it done. Afterwards she crawled into Carrie’s lap and sobbed. She kept saying, “It’s scary… I’m scared.”

While getting her chemo, which begins making her sick to her stomach while they are still putting it in, we watched a tiny little girl, no more than two, throw up two seats down from us. From her mother’s calm reaction, it seemed a pretty normal occurrence. Tanner said she felt bad for that poor baby and knew how she felt.

I keep dreaming about Tanner’s chemo. In my dreams, I watch them hook the syringe full of chemo up to the line off of her port and slowly squeeze it in. Clear Vincristine and bright yellow Methotrexate (Tanner says it looks like pee). Over and over again. And, I wake, wondering what it feels like and how it makes her feel.

The first three months of both my pregnanacies, I was nauseated. I never threw up, but felt like I wanted to most of the time. My stomach just never felt right. I wonder sometimes if this is the way it is for her. It makes me ache to think about it. I don’t know if she feels that way all of the time, but I know that she complains about her stomach a lot, despite taking 4 different drugs daily to help. I remember how at the end of three months of constant indigestion and nausea, I felt worn down by it, like it would never end. I wonder if she feels that way, too, when she whines about it in a way that makes John and I want to tell her to “buck up.”

I woke this morning, after dreaming again about the chemo, wishing I could take some, just to see how she felt. To know how bad it hurt so I could empathize better and be a better caretaker. Tanner is a drama queen in all senses of the word; it is just a part of her huge personality and it is sometimes difficult to separate drama from real pain when you’re dealing with her. But, today, there’s no question. She just feels bad. You can feel it and you can see it on her face. Tonight, at bedtime, she asked, “You got any meds for me?” Meds, seriously. Sadly, I have to tell her no, I’ve given her all I can give. I tell her to go to sleep and she won’t feel it anymore. I leave the room with her asleep, or so I think. She is back out of her room in minutes; she has to go to the bathroom… again. She tells John, “As soon as you can give me some meds, you bring them… all night. Okay, Dad?” We promise her we will.

I wish I could take that chemo so I would know what she felt like; but even more I just wish I could take it for her… so she wouldn’t have to.

Love,
Beth

P.S. This is my public shout out to my husband, without whom I could not endure this. He is probably one of the only people that I tell when I’ve really had it, and, no matter how overwhelmed he is as well, he always comes to my rescue. Tonight, he picked up groceries on the way home so I wouldn’t have to go out tonight to do it… and brought me Ben & Jerry’s. Now, that’s a man I could still love with all my heart after 10 years. Thanks, Baby; I don’t deserve you.

We made it!

We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.

We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.

We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.

Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.

We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.

All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.

One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.

Love,
Beth