Category Archives: clinic

We Need a Miracle

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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

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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

Happy on the Outside

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April 20, 2010

Tanner at the party

Somehow six days have slipped by again without a post. Let me catch you up: Tanner did get to go to her birthday party at Jump Zone – she had a blast and I wasn’t the only Mom handing out the hand sanitizer. The Dalmatian passed the child-worthy test with flying colors and now we’re trying to work out going to the prison to visit him. If all goes well, we’ll put dibs on him and wait until he finishes training in June! Tanner is feeling well, although she seems a little tired and has had some headaches. John and I got to go on a date on Sunday night for the first time in months. We went to see a movie at the Nashville Film Festival produced by our next-door neighbor. Went to church on Sunday (Jake entertained the church during the children’s sermon by showing another child the inside of his nose…) and then had lunch at the home of some good friends. It was a great day.

Tanner dancing after the party... love the shoes

We got a package from Give Kids the World Village today. That’s the resort for wish kids at Disney where we will be staying. It was so exciting to see all that we will be doing. We get three Disney passes, two Universal theme park passes and one Sea World pass. Not to mention how awesome the Village is itself – putt-putt, horseback riding, a train ride, present fairies, ice cream all day, La Ti Da spa, etc., etc., etc. All the characters from Disney, Universal and Nickelodeon come to the Village to visit with the kids. If Jake sees spider man in real life, he may pass out. If only iCarly would show up… Tanner would need nothing else. I’m hoping this trip will suspend reality for us for a while. We could all use a break from that.

So life is good… why is my child so mad? Tanner is struggling with something that is resulting in massive temper tantrums. Her therapist thinks it is anxiety from the newness of school. That sometimes even really good things can be overwhelming. I think Tanner also tends to push until she is more than exhausted, which doesn’t help. Suffice it to say, I’ve received the brunt of Tanner’s anger and it’s exhausting for all of us. Poor Jake doesn’t understand what he has done wrong to make his sister suddenly turn on him. It’s frustrating to finally be at this good place and see her struggle so mightily with something. It’s like the emotion is too much for her, even though the emotion is happiness. Please pray that I keep my patience and that Tanner finds some peace and is able to fully enjoy this time.

It’s tough to know how to slow Tanner down… how to know when she’s had enough, even if she doesn’t think so. She called today from school with a tummy ache. When I got there with medicine, she was lying down on a bean bag chair while the rest of the class sat at their desks. She looked pretty miserable and I just decided maybe she should come home. She didn’t want to, but I felt the rest might be the best idea. She didn’t stay down long when we got home. After picking up Jake, she wanted to go for a walk. I took the wagon so she didn’t get tired, but on the way home, it looked like we had done too much. Then, the meltdown came over something small and stupid (isn’t that how they always happen?). And, she ended up losing some pretty fun stuff because she couldn’t get hold of herself. It’s just a no-win for everyone and I wish I had a rule book to follow. You know, the rule book for kids who have cancer and who have just returned to school and seem happy, but keep having meltdowns. Anybody seen that one at the book store? Online? Guess I’ll have an extra call with Allison. Sigh.

Thursday is her monthly clinic day. Vincristine through her port and the start of another five-day pulse of steroids (that ought to help the meltdowns, eh?). I’m hoping that if the docs want to raise her chemo they’ll let us wait until after Disney. It would be a huge disappointment to have to postpone the trip due to low counts. I’ve tried not to be specific with the kids about when we’re going just in case.

Hoping for a tantrum-free tomorrow…

Love,
Beth

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

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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

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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

A Field Trip to Aunt Beth’s

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March 24, 2010

Did you ever have someone’s house that you went to when you were a kid that seemed magical? My grandparents’ house was like that for me. They had three acres with a big vegetable garden, fruit trees and grape vines that stretched across the yard. I remember doing the simplest things there… like playing in the gravel in their driveway, or climbing up this big weeping willow that was in the median of the circular drive, or sitting on the swing in the dark with my granny, listening to grown-ups talk and the cicadas sing.

When I look back on it now, there was really not anything to do. They didn’t keep any toys at their house for us to play with, although sometimes we would borrow the neighbors’ bikes. The house was tiny and modest, with one bathroom that all seven of us would share, and I slept on the floor every night, sharing a pallet made of old quilts with my two brothers and falling asleep to the drone of the television.

But, still, something seemed so magical about being there. Food tasted better, the simplest things were more fun. I think it was just so different from where I grew up, in the suburbs of Philadelphia. My grandparents lived in the country in Huntsville, AL, on a road named after them because theirs was the first house built there.

My kids have that at their grandparents’ houses, too. The magical basement at Grandmom and Grandad’s house where you can hit a golf ball into a net or “work out” on the exercise bike, or ride a scooter. And, the great cul-de-sac at E. and Papa’s where they ride the battery-powered cars she keeps for them, sled for days, and play with their cousin, Mack.

Digging in Aunt Beth's garden

But, as a bonus, they have Aunt Beth’s house. On an acre-and-a-half in Spring Hill, Aunt Beth dabbles in lots of things that I don’t… namely gardening and cooking. Today, the kids dug holes in the dirt, spread four-o-clock seeds under the weeping willow, fed the geese in the pond, “worked out” in the basement and cooked up some pretty darn good pizza roll-ups.

Being able to spend the morning at Aunt Beth’s took a little bit of the sting out of not being able to go to school for Tanner. She came home tired and napped while Jake napped.

Tanner manning her rock store at Aunt Beth's house

Overall, Tanner doesn’t actually seem to feel bad, although she is stuffed up. I really believe she has allergies, but without knowing for sure or having any idea where he counts stand, keeping her home again today was probably the right decision. We’re off to the clinic tomorrow after dropping Jake off and we’ll find out for sure where she stands. She’ll also get her monthly IV dose of Vincristine, begin her five-day course of steroids. Tomorrow night, she will also take her weekly dose of oral methotrexate, which can kind of wipe her out the next day. So, even if her counts are high enough to return to school Friday, I don’t know how long she’ll last. Monday and Tuesday will also be pretty doubtful as she is usually pretty wiped out by the steroids.

I don’t think I’ll ever get used to this rollercoaster. I might numb myself to it, but then I find I’m numb to all the good stuff, too. For right now though, that’s how I’m sleepwalking through this current disappointment… numb and in a fog.

I’m hoping to wake up tomorrow.

Love,
Beth

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

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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

We Didn’t Make It

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March 2, 2010

We didn’t escape the fever. Tanner developed one this morning and we headed into clinic after dropping Jake off from school. We’re still here. She’s receiving a dose of IV Rocefin (a powerful broad range antibiotic) and then she’s getting an IVIG infusion. That’s the antibody infusion I referred to in my last post. IgG is an antibody that should normally be between 600 and 1,000 in a blood sample. Tanner’s was 478, which is really not especially low for a kid on chemo. The chemo, along with killing cells, kills the antibodies in the blood. But, she has been sick so much, especially with coughs, ear infections and pneumonia, which are indicators of a low IgG level. They hope by giving her an infusion of IgG, she will feel better and her immune system will improve.

The IgG she will receive is compiled from the plasma of up to 100,000 donors, so she will have the combined immunity of lots of people. AMAZING… DOCTORS AND RESEARCHERS ARE AMAZING. Just yesterday, the guy putting the countertops in our kitchen said his wife was a researcher at a local cancer center. I told him to tell his wife we thank God for her and others like her every day.

It’s a little unnerving to have this transfusion; there is a low risk of her having a reaction (much like someone could react to a blood transfusion) and it concerns me that she is receiving a product that is donated by so many people. But, the doctors have assured us the risks are very low, but the possibility of a reward of an improved immune system outweighs any risk.

She feels lousy and is just done. She has broken down in tears several times over small things that wouldn’t normally have rattled her so much. We are tired of being here and tired of the rollercoaster. It’s almost too much for me to bear today, so I don’t know why a six-year-old should have to bear it either.

The nurse just came in and hooked her up for the infusion. Should take several hours and then we will get to go home.

I’m telling you… this is one wild ride.

Love,
Beth

Clinic Day #28

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Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth

Clinic Day #27

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January 28, 2010

Apparently Tanner will be going back to school!!!!!! Hoooooooooorayyyyyyyyy!!!!! We’ll meet with the school next week to iron out any special considerations she will need, let her get over the steroids she started taking today, and start her out on Monday, February 8th. Unbelievable. Really unbelievable.

Clinic obviously went well today, although very long. Her counts were actually quite high… too high. They were 3,300. They should be between 1,000 and 2,000, but the doctor said he wanted to see how she did this next month before he would raise it. Whew! Weird to be hoping for lower counts, but we are. I’ll take the high counts for now, though. It means her immune system will be that much stronger to fight off the school germs.

They also removed all of her eating restrictions. Tanner was almost as excited about that as she was about school. She started yelling out all the things she wanted to eat, “Salad? Grapes? Strawberries! I want strawberries!!!” It was so cute.

After all that excitement, we sat… and sat… and sat… in a very full infusion room waiting for chemo. After an hour or more, the nurse came out to tell us they had misplaced Tanner’s chemo roadmap and they couldn’t order her chemo without it. “An actual physical piece of paper? There’s no electronic file with her two-and-a-half year roadmap in it?” Apparently not. They finally found it behind the filing cabinet and ordered her chemo. More waiting… and waiting. We finally left four hours after we got there; two-and-a-half hours of which was spent waiting for a chemo push that took all of 3 minutes once it got there. You never know with clinic.

Tanner left clinic with her grandmother and they went to see Alvin and the Chipmunks. Then, home for some wii with Jake, dinner and the Make A Wish Interview.

She decided she wanted her wish to be Disney World (secret applause). We looked at Disney World and Disney Land yesterday on the Internet and she saw how much better Disney World was and decided to head to Florida instead of California. I swear I didn’t sway her (well, maybe just a little); I just pointed out that if she wanted to meet the stars of a Disney show, we could probably go to Disneyland as well. She wanted to see it online, then we clicked over to Disney World (that might be the part where I swayed her) and saw some awesome videos of the different parks. iCarly apparently cannot compete with the Magic Kingdom, Typhoon Lagoon and Animal Kingdom. Not to mention that you get to stay in the Give Kids the World village, which is just for wish kids. It has ice cream all day, Christmas every week, present fairies that leave presents under your pillow every night, and a Mayor that’s a rabbit. Seriously. I’m so excited because this is something for Jake, too. Although no one has gone through what Tanner has, Jake is affected by all this and deserves something special.

So, it was a long, but very special, day. I’m going to bed to dream about sending my daughter off to her first day back to school.

Love,
Beth