Category Archives: holidays

A Long Day at the Clinic

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September 8, 2009 Rough day at the clinic today. It was the day after a holiday, so it was packed and we were there from 8:30 to 1:30, mostly waiting. She did well with the waiting, but decided she didn’t like “Sleepy Milk” after all and John and I had to hold her down while the anesthesiologist put her under. Fortunately, with her port being pretty much directly connected to her heart, the anesthesia works within 10 seconds, so it wasn’t a very long fight. Still, it just seemed like such a setback to see her so upset about it when she has handled it so well in the past. The anesthesiologist said that it is common, though, for kids to get upset about being put to sleep after they’ve had a break from it for while.

So here’s what a clinic day looks like… we arrive today at 8:30 am and sign in at the hematology/oncology desk at the touch screen (Tanner likes to do this herself). We then take a seat in the waiting room until we are called up to register and pay. Tanner gets a bracelet at this time and then we sit back down again until we are called into clinic. When we are called in, she gets weighed, measured and her vitals taken, then we get sent to an infusion chair to wait to get her port accessed. Her favorite nurse, Carrie, takes us back to the access room and Tanner sits in a chair to have her port accessed. She pulls off the Glad Press N’ Seal we’ve put over her port to cover the little blob of numbing cream that we put on it earlier that morning. Once that’s off, she cleans the cream off with a tissue and then the nurse sterilizes it with a cold cleansing stick. Then, they put the needle in through her skin into the bubble on top of the cone-shaped port. She likes to watch them put the needle in and wants to count down 3-2-1. Today, she didn’t even flinch. Then, the nurse puts a big plastic sticky bandage over the needle to keep it in place. The needle has a little black box attached to it and then an IV line coming off of it.

Once she is accessed, we go back to an exam room and wait for her blood counts to be run and for the doctor to come to see us. Today, Tanner’s counts were off the charts, for some reason that no one can explain. Her neutraphils were 3,500, up from 1,300 the time before and from 610 the visit before that… crazy and almost normal, although her immune system is still not considered normal. The doctor comes in an examines her, goes over her counts with us and answers any questions we may have. Sometimes, you might get two doctors; if you are seen by a fellow, the attending has to come in later and follow up. Once the doctor has seen counts and talked with us, he orders the chemo by her weight for that day. It takes a little while for the chemo to come up, so normally we go back out to infusion chair so we free up the exam room for the next patient, and when the chemo is ready, the nurse comes out and administers it over a 10 minute period. But, today, they were backed up so they sent us down to surgery and told us to come BACK up after surgery for chemo. Sigh.

Sometime during this whole process, a doctor comes by to run a nutrition test on Tanner for a study we are participating in. She puts some electrode stickers on Tanner’s foot and hand and hooks her up to a machine for a couple of minutes while Tanner lies flat. This is the kind of study I like… it doesn’t hurt.

When you go to surgery, you have to sign in and register again before waiting, again, in the outpatient surgery waiting room. Depending on the day, the wait can range from 10 minutes to an hour, like today. When they are ready, they bring us down to a holding room in pre-op and go through some vitals, and pre-op information before we are taken to the OR. This part usually takes about 10-20 minutes. Once we’re in the OR, we are allowed to wait with her there while they put her to sleep, then John and I go down to yet another waiting room while they do her spinal. It usually only takes about 10 minutes to do the surgery, then we go to the recovery room where our favorite recovery nurse, Leigh, usually tends to us and Tanner. She’s awesome and requests Tanner when she sees her on the board. Tanner has to lay flat for 40 minutes after the spinal to decrease the risk of headache and backache, so they let her sleep all that time, while John and I sit next to the bed and… you guessed it… wait.

Once they wake her, she recovers very quickly. They use propofol for the spinal’s (yes, the Michael Jackson drug) and she wakes up as if she’s taken a nap and is pretty alert within minutes. Normally, we go straight down to car and leave, but today, we had to go back up to the clinic for chemo. Mind you, Tanner’s had nothing to eat since the night before and it is 1 pm. Upstairs, they hook her up to get chemo and we wait, watch TV and eat chex mix until that’s done. Then, we start the process of getting the very sticky tape bandage off of her chest, so she can have her port de-accessed. Once we’ve taken the bandage off, they take the needle out of her port. Oddly enough, Tanner has more anxiety about them taking it out than putting it in. Again, she wants to watch and count down. Once the needle is out, we stop by the front desk again to make an appointment for next time and… finally… go home.

The combination of the three chemos Tanner got today have really messed her stomach up and she has been sick to her stomach all afternoon. She is slowly getting a little better and I hope will be fine by tonight. I’m going to see Wicked tonight with some girlfriends and you know who kids want when they don’t feel good… mama.

Suffice it to say, it’s a long day for adults, much less a 6-year-old and we’re glad it’s over. I know this is a long post, but if you’re reading this, you’ve made it through and I appreciate your patience. September is Childhood Cancer Awareness Month and I think it’s important for people to realize what these kids go through. Right now, Tanner’s going to clinic every 10 days, but for most of the first 6-9 months, she goes through this whole ordeal every week… every week. It’s a lot to ask of a kid and many have it much worse than she does. Lots of kids spend months shuttling back and forth between the hospital and the Ronald McDonald house undergoing intense therapy and extended hospital stays. Hopefully, through research, we’ll find a better way. Or better yet, find a way to prevent this mess.

Love,
Beth

Just a spinal tap

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July 16, 2009 My friend Ashley laughed at me yesterday when I told her, “She just has a spinal tap with chemo tomorrow, so I think we should be able to play in the afternoon, no problem.” She said most people would be stressing about their kid having a spinal tap and would expect it to be an exhausting day.

It’s all in your perspective, though. When you’re on spinal tap number 5 within the past 6 weeks, it doesn’t seem like that big of a deal. We’re pros now at the whole process and Tanner is the biggest pro of all. I realized today, though, that I’ve been taking her attitude about going to clinic for granted. A little boy, about 4 or 5, cried today the whole time we were in the waiting room. His mother’s reaction told me that it wasn’t the first time and that she was used to him fussing. We heard him screaming later when we were in our exam room… I don’t know if he was getting his port accessed for an IV or whether something else painful was happening, but it made me realize what a trooper Tanner has been.

Had a good day at Clinic today. Her counts had rebounded really nicely. Her neutraphil count (big infection fighting white cells) was 2200, up from 1130 last week. It doesn’t really change what we are able to do too much, but makes us feel less anxious, at least, about her getting an infection.

Her energy level continues to astound me. She never took a nap today (aside from the “nap” she took while getting the spinal!) and we rode bikes and played on the playground in the afternoon. She even had energy for a monster tantrum after dinner (although, in retrospect, maybe all the activity today caused the tantrum… hmmm).

She has had quite a temper for the past week or so. The steroids are out of her system, so I can’t blame it on that, but wonder sometimes how angry I would be if this were happening to me. I wonder if I might be snapping at those around me, even though it wasn’t their fault… and I’m a grown-up (at least, most of the time). Even with Tanner’s considerable verbal skills, a six-year-old doesn’t have the maturity to express that anger appropriately. (Which is easy to say now that no one is screaming “No!” at me.)

I know that finding out there is yet another thing she is not allowed to do or another event she is missing is really frustrating to her. She will tell me how it makes her feel every once in a while and it breaks my heart. At the end of her birthday party, some of the other kids were talking about going to the mall playground to keep the party going. Tanner got all excited and started talking about going there and then to chik-fil-a afterwards. I reminded her that we can’t play on the mall playground, but promised her that we would pick up chik-fil-a and take it home. She burst into tears; I think she had felt so normal at her birthday party that she had forgotten she had limitations. I hated to be the one to remind her.

Then, two nights ago, we had a really special treat… Matthew West, his wife Emily and their two daughters, Lulu and Delaney, brought us dinner at the house. Tanner and I had just watched one of Matthew’s videos on demand the day before and here he was in our house. They were such nice people and we had a great time, just talking and sharing our kids. Tanner took Lulu, who is 3, right under her wing and led her all around the house. After a while, Matthew brought out his guitar and sang a few songs for us. What an amazing voice and his songs have such a great message. He was telling Tanner, who was listening raptly, that one of his songs was written about how God helps when things are hard and said to Tanner that she has to be brave and strong and has been through lots of difficult things. Tanner piped up and said, “There are a lot of things I’m not allowed to do now and it’s hard.” Then, she mustered up a half-smile and said, “But, it’s okay, though.” Clearly, it’s not.

Tanner & Lulu watching Matthew West sing

Tanner & Lulu watching Matthew West sing

We ended the visit with a prayer between the two families, with everyone holding hands. It was really special and we felt like we made new friends. We didn’t know them before that night; they are friends of a friend and just got interested in our family and wanted to help. Just another example of how blessed we are by people’s kindness.

Okay, so this post is long enough. Making up for no post last night. My friend Beth spent the night and we watched a movie, drank wine, giggled and stayed up too late, so no post, but great therapy.

Love,
Beth

Blessed Normalcy

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Tanners B-Day Party 013July 13, 2009 I woke up this morning thinking how cruel it was that after feeling so good for the past week, Tanner was feeling very nauseated… the morning of her birthday party. But, 5 medicines and a bowl of cereal later, she was back in the game and the rest of the day was awesome!

The Build-a-bear party was the most normal experience we have had since Tanner was diagnosed. She was just a normal little girl having her 6th birthday party with 5 little giggling friends. They screamed, giggled, stuffed bears, sang the birthday song… all the normal stuff. She had a ball and forgot for a little while that she had leukemia.

Part of what made it so normal was the she didn’t need any help from us during the party. She has figured out a somewhat unorthodox, but effective method for getting herself up off the floor and was able to march around with everyone else without drawing any unusual attention to herself. Great fun!

Then, the piece de resistance… we took the training wheels back off the bike and rode the whole neighborhood. We stayed outside from 4:30 to 7 pm riding bikes, playing in the gravel, meeting neighbors and rolling in the grass. This is what I love to do with the kids. I love to be outside, to find unexpected friends and just let the fun happen. It snapped me out of a funk I had been in for days.

How amazing that Tanner is doing these things. Is there really chemo in that pill she is taking every day? How can she have this much energy? I think I had given up hope that she would be able to do these types of things for a long, long time.

We’re basking in it while we can.

Love,
Beth

Just Say “Yes” to Build-a-Bear

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dec 08 015July 12, 2009 I stressed all last week about whether to change Tanner’s birthday party date. I had originally scheduled it for the 6th, but thinking we were going to have a break in chemo, moved it to the 13th so she would feel her best. Then, we figured out there really was no break, except a week without vincristine, and couldn’t decide what to do. When she felt so good last week, I kept thinking I should change it, assuming the new chemo treatments would knock her back and she would feel bad at her own birthday party.

Well, her party is tomorrow and she couldn’t feel better!!! The two doses of chemo she received last Thursday and the chemo pill she has been taking daily has yet to affect her, and if anything, I think her energy level has steadily increased all weekend. She has gone from napping two and three hours every day to not napping at all.

Her legs also grow stronger every day. We went to the playground today and she climbed a rock wall! Really. She still can’t run and has difficulty climbing stairs or getting herself up off the floor, but I do think these are just loss of muscle issues leftover from the steroids and from a month spent lying down. She definitely needs some physical therapy, but it’s amazing how much her willingness to play has made a difference.

It’s possible this oral daily chemo she is on may prove me wrong and have a cumulative effect on her which eventually drags her down, but with no more vincristine this month, I hope that she will continue to feel good.

Having said that, her counts were pretty borderline last week, so we’re feeling extra cautious about germs. It’s frustrating for her to feel so good, but still be so limited as to where we can go and what we can do.

Today, I felt like we had to say “no” to her over so many things. “No, you can’t come into the restaurant with Mommy; I’ll pick up the food and we’ll eat at home.” “No, we can’t play in the creek, there are germs in there that could make you sick.” “No, you can’t eat those grapes; you can only eat fruit we can peel.” “Don’t pick up that worm… it’s not good for you.” No. No. No. No. NO!

Ick! It’s not like you don’t say no enough as a parent. To have to say no to so many things is hard. Every time I do, I feel as if I am reminding her she is different… sick.

This morning as she struggled to get up the step from the patio to the back door, she turned and said, “Mom, why are some things that are so easy for some people so hard for me?” I explained about the chemo, but even as I said it seemed like a raw deal to me. She said, “We shouldn’t take something that is so bad for me.” It seems the irony of chemo isn’t lost on even a six-year-old.

But, tomorrow she should be able to do everything everyone else can. In fact, I would say she qualifies as a world champ at Build-a-bearing, cancer or not. There won’t be any stairs, any need to run or do any of the other things that set her apart from other kids. Just some of her best friends, some cute bears, a fairy cake and presents. She can handle that, no problem.

Love,
Beth

Birthday fun

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July 9, 2009 Thanks so much for all the birthday wishes for Tanner. I held up a handful of birthday cards that came in the mail yesterday and commented that I had never seen so many birthday cards for one person. Tanner said, “A lot of people care about me.” Amen, sister.

We went yesterday morning to the Dollar Store at an off time when no one was there and let Tanner pick out her plates, cups, etc. for her Build-a-bear party on Monday. She’s inviting a few girlfriends and they’re opening the store early so she can go without exposure to any other kids. (Thank you Build-a-Bear) She’s super excited.

Then, last night we had a family party at the house with pizza and a Sundae bar. Tanner hasn’t been able to see her cousin, Mack, since she was diagnosed because the family has been passing a bug around. So, she was really excited and they had a really good time.

Today was our clinic day. We began the Consolidation phase of treatment today, which will last 4 weeks. Had a dose of vincristine (chemo) and an injection of another type of chemo into her spine. In addition, we started on 6-MP, which is an oral chemo she will take daily for the next month. It all went smoothly, although we narrowly missed not being able to start consolidation today because her neutraphil count was very close. It needs to be above 1000 to start and Tanner’s was 1030. Squeak!

So far, so good with this chemo. She came home and watched a movie while she ate, played on the computer with Jake for a while and then we all went outside to ride bikes for a while. She did just fine on the bike. Needed a little push up the hills and to get started, but otherwise did fine. I so, so hope that this dose of vincristine doesn’t set her leg strength back. She’s gaining so much every day and it’s so normalizing.

Special thanks to my Bunco girls tonight for getting me out of the house for a good time. Good girlfriends are good therapy. Also, thanks to my mother-in-law who came again this week so I can get out of the house, spend some time with Jake and have some help. I’m lucky to be part of such a loving family.

Here’s to more days of birthday fun!

Beth

Independence Day

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July 5, 2009 If you told John and I a week ago that we could have had the kind of holiday weekend we have had, we never would have believed you. Our daughter is back! Instead of having to convince her to get off the couch, we have to convince her to take a nap.

What did we do this weekend? A better question would be what didn’t we do? Saturday morning we went swimming at the Whitler’s. If you didn’t see Tanner fall on the way to the pool or labor down the stairs, you would have never know there was anything wrong. In the water, she is her old swimming self. Flips under water, swimming to the bottom for torpedoes Jake kept throwing into the pool, paddling across the deep end. She looked like any other kid. It was a moment of pure joy for John and I to watch her in an arena where she could match up to other kids.

Having said that, she was exhausted afterwards. I had to wake her 3 hours into a nap so we could go to a 4th of July cookout at the Adkins’ across the street. The original plan was to go over at 5:30 or so, then come home for a little while for a rest and then go back for fireworks. Apparently, that was not Tanner’s plan. We stayed straight through until almost 9 pm. They ate, played inside and outside, caught fireflies, ate freezer pops and did everything a kid should do at a cookout. Tanner was right there with the other kids. Sure she couldn’t jump or run to catch a firefly and she fell several times, but she hung in there and had a great time. Again, though, when she got tired, it was instant. She suddenly said, “Mom, can we go home now? Right now?” Kendall carried her across the street to the house. John and Jake had gone home earlier when Jake discovered that he did NOT like fireworks. “I not like that BOOM!” he said, with his little hands over his ears.

Sunday was the best day of all. We hung around and took it easy all morning… because… Roger Day was coming to our house for a private concert!!! If you don’t know who Roger Day is and you have kids (or grandkids), you should. He’s awesome. He’s a singer/songwriter that the kids love and the parents can actually enjoy as well. His lyrics are funny and clever, but the music is solid and his concerts are tons of fun. We’ve seen him a number of times and own all his Cds and his video. He plays all over the country, but lives right here in Franklin. You can check him out at www.rogerday.com. A million thanks to him for taking time out of his Sunday to help a little girl who can’t go to his concert this Thursday at Brentwood library (shameless plug). We always go to see him when he plays in town, but can’t anymore because of Tanner’s immune system. After he left, he actually drove all the way home and came back with a signed T-shirt for Tanner that he had forgotten to bring. Nice guy or what?

We invited a few friends over to sing and dance with us and had the best time. All the kids were dancing and doing all the special moves to “Mosquito Burrito” and “Roly Poly.” A physical therapist couldn’t have worked Tanner out any better. Roger played for nearly an hour and serenaded Tanner with his cool Happy Birthday song. She was thrilled. We’ll try to post some video to the site, if we can, to show what fun the kids had. The funniest part was when Roger came through the door and Tanner saw him. She walked to him, intending to throw her arms around his waist in a hug, but fell right before she got to him. Miraculously, she played it off as if she had meant to do it and threw her arms around his calves instead, saying, “You’re Awesome!” She never missed a beat.

After Roger left, Tanner went to Corinne’s house for Ms. Ashley’s famous homemade pizza. Ashley called at 6:30 to say that Tanner was going to fall asleep in her plate if I didn’t come get her. While she was there a tooth fell out, too. When I went to get her, she asked if I would carry her home and when I picked her up, she whispered in my ear, “Can we go straight to bed?” Which is exactly what we did. Exhausted, but happy.

In short, this weekend was better than we could have ever hoped for. I’m not so naïve as to think that there aren’t hard times ahead, but I’m just trying to live in this moment and not worry about what next week will be like. We’ll hang on to the memory of this weekend for a long time and bring it out when we need it to remind us of what is at the end of this long journey. It was the first time that I felt like we ruled the leukemia instead of it ruling us. We got the best of it and declared our independence from it, even if temporarily.

Happy Independence Day! Hope yours was even half what ours was.

Love,
Beth

Hospital Update

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Tanner’s fever is down this morning after 2 IV antibiotics. Her leg pain has also lessened, thank God. Her blood cell counts still look good today, so I think we’re going to get to go home. We just have to find an attending who can make that official. The hospital is packed and it’s a holiday, so we may not even see the attending until this afternoon.

She’s on contact precautions right now. It’s so funny, because here I sit with my cold that has brought all this on, but every medical person that comes in here gowns up and wears gloves. So strange. Definitely don’t plan on coming by to see us unannounced; we can’t have visitors at the moment.

Good grief! When else does a 100.7 degree fever send you to the hospital overnight? Will keep you posted.

Love,
Beth

In the Hospital… again

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Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.

I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.

The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.

Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.

Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.

Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.

Will update in the morning.

Beth

the bottomless pit

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Good grief!!!  You have never seen a child eat until you have seen one on high dosage steroids!  It is a full-time job just keeping her fed.  Two-and-a-half rice and cheese tacos, tortellini, chex mix, oranges, chex mix, two bagels with cream cheese, chex mix, etc., etc., etc.  She ate cheese nips at least three different times in the middle of the night last night.  She wakes up at night and talks about the food she will eat the next morning and begins planning her next meal before she even finishes the one she is eating.  Food, food, food.

Each day we get further away from the chemo she gains a little energy.  She still lays down most of the time and sleeps a lot, but she has more moments when she seems like herself.  Unfortunately, tomorrow is her last day before chemo on Tuesday.  We’ll try to make the most of it.

What I really can’t wait for is for the end of these steroids.  They have robbed us of our child.  She is lethargic and depressed then obstinate and agitated.  She isn’t my bubbly child.  She has no enthusiasm for anything.  Her birthday is in two weeks.  She told me today she didn’t want to have a birthday party at all… she didn’t care.  I have booked her a birthday party at build-a-bear during her week break between this first stage of chemo (induction) and the next (consolidation).  By the day of her party, she will have not had steroids or chemo for two weeks.  I’m hoping she’ll feel really good and change her mind.  Her doctor will allow us to do it during that week because typically white blood counts will rise without the chemo.  Build-a-bear has graciously agreed to let us in before the store opens at 9 am so that she is not in a crowd of kids (another of the doctor’s stipulations).  I want this to be special for her.  I don’t want it to be yet another thing we lost to leukemia.

So, we have 14 more days of steroids and then, maybe, we’ll get her back.  She’ll have to take the steroids again later, but I think for only 5 days out of the month.  Pray for our patience during the next two weeks so we can get through this.

Thank you all for your continued support.  We are lucky beyond description to have such friends and family.   We love you all.

Beth