Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.

Love,
Beth

The Drama Queen

June 9, 2010

Jake and I picked Tanner up Monday afternoon from her first day of theater camp to find the most fired up 6-year-old you have ever seen. She was singing her newly learned songs to me before we even got into the car, glancing at her lyrics notebook to remind herself of the words. She was, in a word, aglow.

I told John that I night that I believe I had witnessed Tanner find her place in the world that day. All of her unbridled and emotional enthusiasm fit right into the world of song and dance, and I believe I will be driving her to play rehearsals for the next decade or so.

She is really proud of herself for getting a solo that she had to audition for and win from some other kids her age. She is singing “I hope I get it” from A Chorus Line. It is pretty hilarious to watch a very earnest, almost-seven-year-old sing, “I really need this job; I hope I get this job.”

She’s in camp all this week with a performance on Friday. She cannot wait for that performance. She keeps asking me how many days until Friday. It will be interesting to see if she gets stage fright.

Tomorrow, Jake, E. (John’s Mom) and I will pick her up from camp and head to the hospital for a counts check. They want to be sure the newly upped methotrexate dose isn’t making her counts drop more than they want it to. I’m terrified that her counts will have tanked and she won’t be able to do the show on Friday. It would be, to say the least, devastating. So, please pray, light candles, send up positive karma into the universe. She wants this so badly.

We’re also counting down the days to Domino, who is coming to his new forever home on June 23. We have his new bed all ready in the living room, filled with toys, chews, and a collar and leash. We’ve had so much fun getting ready for him to join the family. Cancer took our sweet border collie from us last year, and cancer kept us from getting a new dog for the nine months since then. But, now, we’re almost finished waiting to get back what cancer took, and we are giddy with excitement.

Good counts, good counts, good counts… there isn’t enough money in the world for the therapy she will need if she doesn’t get to sing and dance her little heart out on Friday.

Love,
Beth

Disney Here We Come!

May 9, 2010

Well… we made it this far with no fevers and we’re on our way to Disney! As usual though, things haven’t gone exactly as planned.

Saturday morning, Tanner woke up sounding a little worse and we really struggled with what to do. If we canceled, we wouldn’t be able to reschedule until fall. If we went, we risked ruining the trip with a visit to the hospital and exposing her to all those germs when her immune system was compromised by possible illness. Ughh. We hate these decisions. We decided to take her to the pediatrician’s office and see what they thought. They listened to her lungs and checked her ears. ALL CLEAR!!! Then, they were kind enough to run counts for us. They were elevated… boo! That indicates she is fighting something. But, overall, the pediatrician felt like she was okay to go but suggested we check with her oncologist. So, I called in to clinic and gave them all of our information.. they also said, “Go!” But, in asking about whether we were exposing her to undue risk by taking her to a park with thousands upon thousand of people, they said the airplane was really our biggest risk.

After much deliberation, we decided to drive to Disney instead. It was just one risk we could eliminate. So, we called Make-A-Wish to cancel our flight, packed up and got the car tuned up within three hours, and got on the road yesterday!!!! Hurray! We drove last night to my parents’ house outside Atlanta and stayed overnight. This morning, we are on our way and should be there by 6 pm.

Tanner doesn’t seem any worse; she really isn’t coughing too much this morning. Everyone is super excited and we’ve got our fingers crossed we’ve made the right decision.

Mickey Mouse… here we come!

Love,
Beth

We Need a Miracle

May 7, 2010

Today, Tanner woke up with a nasty cough… two days before our Disney trip… seriously.

I can’t tell you how this is affecting all of us. John and I are worried to distraction. It will be a serious blow if we even have to postpone this trip. I’ve called clinic to see if there is anything we can do, but feel pretty sure they’re going to say, “Wait and see.”

We’re going to watch movies and play wii and rest all day… maybe it will fade. Doesn’t sound like allergies, but maybe, just maybe… Anything, we’ll take anything. We’re desperate.

We went to clinic yesterday for counts and they were perfect for this stage – 1200. Of course, we would have preferred to go to Disney with the higher counts we had two weeks ago (2,100), but the doctors feel good about these counts. The higher dose of 6 MP obviously did it’s job.

We need a miracle. Please let whoever’s in charge of those know that you agree.

Love,
Beth

Clinic Day #31

Clinic Day #32

April 22, 2010

It was a long, but pretty uneventful clinic day. We were there for nearly four hours to get five minutes of chemo, but sometimes that’s the way it works. It was standing room only and the doctors and nurses were literally running from room to room. Tanner’s beloved Nurse Carie was out of commission; she had dislocated her shoulder and was on desk duty. Tanner was a little nervous about Nurse Chris accessing her port, but did really well with it.

Her counts were actually high – 2,100 – higher than the doctors like them to be. They did raise her chemo, but only half of it. They bumped up her 6MP to 100% dosage, but not her methotrexate. The hope is that she’ll come back down to acceptable levels, but not bottom out before our Disney trip. We go back in two weeks, right before our trip, to check counts. I’m slightly stressed about the trip getting messed up by the upped chemo, but trusting the docs know best and also keeping in mind that counts that are too high allow leukemia cells to creep back in. Medicine before Mickey, you know what I mean?

Spending that much time sitting in the infusion room means the chance for me to chat with the other parents and Tanner to make friends. She brought a coloring book and crayons out to an adorable little boy named Ian who captivates Tanner and me nearly every visit. Then, she played Barbies with another 6-year-old and then, they shared an infusion chair while they played Wii.

I talked Disney with a couple of Moms to get the low down on Give Kids the World Village. And found that one’s little boy has been coming for treatment for four years due to relapses. The other has a sweet little one-year-old that is asleep every time we see them. She said they give him drugs to put him to sleep until several hours after his treatment or he throws up the whole time. I overheard two other families talking about brain tumors that were affecting their children’s sight and the surgeries they had gone through to try to save their eyes.

Later, an infusion chair opened up and Tanner and moved to the other side of the room where I sat inches away from a little baby and a very tired mom. We began talking and I found out her daughter was six months old and has face cancer. She has been undergoing daily radiation for four weeks and has two more weeks to go. She had already had radiation that morning and had been waiting for two hours for her chemo. The family lives in Chattanooga and has had to stay at the American Cancer Society house. In all, this precious, smiling baby will go through 10 months of chemo and radiation. She was kicking in her car seat, her nose raw and scabbed from the radiation treatments, but still cooing and shaking a little toy with a huge smile on her face.

I asked her mom when her daughter was diagnosed. “She was four months old,” she said.

“Not what you expect when you have a baby,” I said.

“No… I still can’t get my arms around it,” she gushed, looking as scared, tired and overwhelmed as I remember feeling those first months after Tanner was diagnosed.

I assured her that you do get used to it. That there will come a day when you don’t wake up every morning and think, “How did this happen? Does my daughter really have cancer?” You’ll just accept it.

And, the truth is, you do accept it and it gets a little easier when you’re not shocked every time you look at your child. But, it’s not what any of us expected… whether our kids were four months or 14 years when they were diagnosed. Not one of us ever expected to hear the words, “Your child has cancer.” It’s unimaginable, but the craziness in clinic today is testament to the fact that it happens all too often.

If you have been a long-time reader of Tanner Time, you might remember that Matthew West, a Christian recording artist, and his family came to our house one night to bring us dinner and sing some songs for Tanner. Tanner loves the CD that he left for us and we were playing it in the car the other day. There is a song on the CD he wrote for his daughter, Lulu, when she was born. It’s a beautiful song, but I have a hard time listening to it anymore because the lyrics tear at me.

The world’s a scary place here

But baby it’s alright

I’ll make sure the coast is clear

So you can just sleep tight

But if you’re afraid of monsters

Like everybody is

I’ll be right beside you

Closer than a kiss

Safe and sound
You’re here with me now
Like we hoped you’d be
Safe and sound
You’re here with me now
And that’s all I’ll ever need.

Here’s the thing about this song. It’s the way every parent feels. It gets to the core of what it is to be a mother or a father… to protect your child and make a safe place for them to grow up. But, in that room today, I saw dozens of kids whose parents would do anything to make them safe again. To make the monsters go away. But we are helpless to make it better. To soothe away the bad dream that is cancer.

So we trust our doctors. We accept that our child has a life-threatening illness and try to make their lives as normal as possible. We give medicine we don’t want to give. We watch for side effects we wish didn’t exist. We pore over lab results and pray we don’t hear bad news from the doctor.

But, mostly, we try to make sure our kids feel safe and sound… even if we know they’re not.

Beth

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

Stumbling Blocks

March 23, 2010

Tanner woke up on Sunday morning with a cold or allergies, hard to tell which. She sneezed all day and was stuffy. Monday morning she seemed no better so we kept her home from school and gave Claritin a try. She didn’t sneeze as much and, aside from a little tired patch in the afternoon, seemed fine. This morning, still stuffy and we sent her to school. They called me by noon to pick her up. Her teacher said she didn’t have her normal energy level and that she asked to go home during recess.

She actually didn’t seem that wiped out this afternoon. She was actually really frustrated that I wouldn’t let her have a playdate. I kind of think she may have allergies, but who’s to know and wouldn’t it be a stupid mistake to send her into the germ fest that school is when her immune system in compromised. Truth is, we don’t know what her counts are. They increased her chemo two weeks ago and that alone could be affecting her counts. Also, you never know what a cold could do to her. We’ve seen infections and viruses make her counts go sky high and we’ve seen them wipe them out. So, difficult to make any kind of educated guess about the right thing to do without a true counts check.

We go in for our monthly clinic visit on Thursday so we’ll keep her out of school until then to be safe. If her counts are good, she can go to school Friday, but she’ll start steroids Thursday morning, so who knows whether she’ll feel like going.

It’s so hard to make a good call in this situation. Inevitably, you go with the choice that keeps her from ending up dying from some cold gone bad, even if it means you feel like you’re slaying her psyche in the process. Seriously, this is the way we think. She senses my lack of conviction in the decision to keep her at home and begs and wheedles for playdates, school or anything that gets her around kids. I don’t understand it, so I don’t know how she’s supposed to.

I feel like this is a blow I had prepared myself for and I don’t feel too surprised by it. Discouraged maybe, but not surprised. I hate that she’s having to stay home most of the week after such a small taste of freedom, but I’m also thankful she got to have last week at all. I’m more discouraged that, after the IgG transfusion, she still seems to have caught a respiratory virus. Hopefully, that’s not the case and it’s just some spring allergies.

Tanner’s handling the disappointment okay on the surface, but is still having some behavior issues which indicate all is not as well as she claims it to be. We have an appointment with the play therapist who, mercifully, came back from vacation. Hopefully, that will help.

On the agenda tomorrow… maybe a field trip to Aunt Beth’s.

Arggghhhhhh.

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

The Inevitable

March 1, 2010

Tanner in the flower girl dress she would have worn the day she was diagnosed with leukemia.

Tanner finally caught Jake’s coughing virus. It was probably inevitable. The good news is I took her to clinic and her counts were still very strong (4,000!!!!) and her lungs were clear. They think she probably has the same virus he had, but the steroids have suppressed the fever aspect… hopefully. We’ll find out when she goes off the steroids tomorrow. She takes her last dose in the morning. She’s done really well with them this time. Her emotions have been more in check than in the past. She is still tired and doesn’t feel well and, tonight, not sleeping well, but all in all, better.

So, here’s hoping the cough doesn’t turn into something else. Her counts are certainly high enough to fight it off.

The doctor also decided to test her for something called hypogammaglobulinemia… really… I’m not making this stuff up. It’s an immune disorder that would have been caused by both the leukemia and the chemo that make’s Tanner’s immune system weaker than normal, even for a leukemia kid. They see it occasionally in kids with ALL. If she has it, she will need a monthly transfusion of IV Immunoglobulin during her clinic visit. The doctor says he has seen great results for these kids. We’ll find out next week at our clinic visit.

So, not what we planned for today, but it turned out well. Hopefully, she’ll get over the virus uneventfully and we can take advantage of these crazy good counts and have some fun!

Love,
Beth