Category Archives: family

Clinic Day #25

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

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

December 17, 2009

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

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

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

Jake and Ms. Julie singing Jingle Bells

Jake and Ms. Julie singing Jingle Bells

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

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

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

Love,
Beth

The Breaking Point

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December 16,2009

Tomorrow is a pivotal day. We go to clinic in the morning for counts. The results will likely determine the course of our holidays – joyful and with lots of family, or a little less joyful and by ourselves at home. I feel like this will be the breaking point for Tanner… and possibly for me, too. We want — no we need – a change of scenery and a chance to forget about cancer, even if only for a few days. The thing is, Tanner feels really good these days. It’s hard sometimes for me to remember to give her midday medicine because she seems so normal. But, still, we’re reminded every day by the places we cannot go and things we cannot do, that she is not normal. Being able to spend the holidays among family would be as close to normal as we have had since diagnosis. I don’t know how I will console her if her counts are too low to go.

The stress of everything depending upon this count check has definitely gotten to Tanner. She has begun in the last few weeks to act out and has steadily gotten worse. We haven’t seen this type of behavior from her since her stint of acting out after diagnosis. What seemed to help her then, and I believe will help her now, is our play therapist, Allison. It is so weird, but without ever talking to Tanner about leukemia or her difficulties with it, Allison is able to help Tanner work out her feelings through play. She says Tanner is very transparent in her play. Last week, Tanner forced animals and dolls to drink “toilet water,” telling them they had to do it and if they didn’t, she would have to hold them down and make them drink it. I think toilet water is actually a really good analogy for chemo.

Tanner is also anxious about moving. What started out as a really positive thing has turned into a source of anxiety. She is nervous about leaving her friend, Corinne, and about meeting new kids in the neighborhood when she has no hair. She has also started obsessing about the dog we lost several months ago, Millie. She writes her notes and puts them on her ashes urn and talks about her all the time. She is afraid to leave the room I am in and won’t go upstairs without either Jake or me with her. She is still sleepwalking and having nightmares, although she is sleeping better than she was several weeks ago. It’s heartbreaking to watch her self-destruct this way. She is eaten alive by anxiety and it manifests itself in bad behavior.

So, please pray for us in the morning. We need good counts. We need a break. I don’t want to have to tell her, yet again, that we will miss something important to her.

Love,
Beth

House Calls

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December 15, 2009

Well, Jake’s school stint lasted two days. He has a cold and I had to keep him home today. He missed his Christmas party, bless his heart. And, I was supposed to take Tanner to see Princess and the Frog while he was at school, so that was also a no go. We’re hoping Tanner doesn’t catch the cold and end up spending Christmas at the hospital.

BUT, the day was saved by a special visitor… Tanner’s favorite ER nurse, Blaire, came to play. Seriously, how amazing is that? Blaire was Tanner’s nurse back in March when Tanner was lifeflighted to Vanderbilt for a Bactrim reaction. All that long night, while John and I sat in chairs and hung on to hope that Tanner would make it through the night, and that someone would figure out what was wrong with her and be able to fix it, Blair was there. She was quiet and competent and sweet to my child and to John and I.

The next time we were in the Vanderbilt ER was on May 30; the pediatrician had sent us in after having spent most of the night at Williamson Medical Center’s ER with excruciating back pain. We were sent home having been told that Tanner was constipated. The next morning, after not sleeping for most of the night due to the pain, Tanner developed a fever and we went to the pediatrician’s office. They sent us to Vanderbilt where she had numerous tests and were told that she most likely had leukemia. Again, Blaire was there, this time with Megan (who Tanner also loves). I think going through that kind of trauma bonds you in a strange, but powerful, way. Blaire and Megan came to visit Tanner while she was in the hospital that first week, even bringing gifts for her. They said they rarely get to see what happens to their patients after they leave the ER. We thought they were amazing.

A month ago, Tanner needed a blood transfusion and John took her to the ER. Guess who was there?!!! Blaire! I think it’s unusual to keep getting the same nurse like that when there are so many shifts and the Vanderbilt Children’s ER is so big.

Blaire contacted me through the blog the other day. She said she had the week off and would love to come play with Tanner. Of course, we said yes. Today, she and Tanner danced, dressed up Build-a-Bears, played restaurant and doctor, and even played wii. Tanner loved it. She needed it. I don’t have the stamina to play with that kind of intensity anymore… I’m burnt out on pretending.

I think it is amazing for a nurse that sees sick kids all day at work to choose to spend her time off with a sick kid. But, honestly, that’s been our experience at Vanderbilt. John and I say constantly how awesome it is that the people that work there are unfailingly compassionate. For example, when Tanner has a CT scan, you can only imagine that she is the 20th kid the tech has scanned that day, but you would never know it. They are kind to her, and kind to us. They genuinely care.

We are so fortunate to have a hospital like Vanderbilt so close by. I keep up with the CaringBridge site of a little girl named Kinsee that has T-cell ALL and just had a bone marrow transplant. She lives in a small town in West Tennessee and travels to St. Jude for treatment. When she is in intensive phases of treatment or her counts are low, she and her mom have to live at the Ronald McDonald House or the Target House. I can’t imagine how disruptive this is during what is already an unbelievably stressful ordeal.

Today, Blair reminded us of just how lucky we are. Not only do we live 20 minutes from Vanderbilt, they make house calls! I meant to take a picture of Tanner and Blaire for the post, but forgot. Tanner says Blaire took some with her phone. Maybe she’ll send them to me (hint, hint) and I’ll post them if she doesn’t mind.

Love,
Beth

Happy Anniversary

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December 11, 2009

cabo san lucas 072Ten years! I have been married to John for 10 years. There have been ups and downs, good times and bad, smooth rolling and rocky moments and… well, the unimaginable. Together, we have traversed this road side by side and I can’t imagine having taken this journey with anyone else.

The best part about John is that he gets me. He knows I usually have a negative knee jerk reaction to new things at first, but that, usually, after thinking about it, I’ll consider it rationally and come around. (And, no, I don’t usually apologize for the knee jerk reaction.) He just knows that’s what I’m going to do and rolls with it. He knows that’s me and it’s probably not going to change. And, he doesn’t make me feel bad about it. I have a big personality and need someone confident enough to deal with that. If anything, John’s personality is bigger than mine, but somehow, he complements me instead of overshadowing me.

Over the past six or seven years, John and I have faced a lot together. On the way to having Tanner and Jake, I miscarried three times. Jake was born with one kidney and had bladder reflux… thankfully it resolved itself without surgery. John’s Mom has had breast cancer… twice. Then, of course, leukemia for Tanner, an unimaginable diagnosis that could rock the foundation of any relationship.

All these things could have separated us. The stress alone certainly drives John and I to say and do some things we wouldn’t normally say or do. We certainly don’t always agree on everything to do with Tanner’s treatment. But, in the end, I think we’re a tighter team than we have ever been before. We work on it, forgive each other, and sometimes just agree to disagree. But, mostly, I think we come out on the same side and face things head on… together.

Dr. Phil (I can’t believe I’m quoting Dr. Phil) once said that marriage is NOT 50/50. Sometimes it’s 80/20, sometimes 60/40 and, occasionally, 100/0. I think you have to have faith that it evens out in the end and not keep score. I think the best thing about our relationship is that John and I carry each other when we need to and try not to make a big deal about it. No one needs to feel bad about the times when you’re not really pulling your weight.

Bottom line is, I’m crazy about my husband. He is goofy and kind. He has an unwavering commitment to me and to the kids that is rare. He is strong and solid an amazing dad and husband. He makes me laugh and still gives me butterflies. And, I just like hanging out with him… he’s fun.

Happy Anniversary, Baby. I love you.
Beth

Taking it Back

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December 9, 2009

We’re working fast and furious to pick materials so we can hit the ground running on our new house renovations when we close next week. Buying this house has been a really great thing for all of us. It feels like we’re getting back something the cancer took from us back in June when Tanner was diagnosed. We may have lost the house we had a contract on back then, but we have found another that suits our needs even better and lets Tanner stay in her school as long as we want.

It’s also given us something to look forward to. Something we know is not going to be taken from us, or fall through because of low counts or because someone got sick and we couldn’t be around them. There are so few things I allow Tanner to look forward to these days – it’s just too painful for her to be disappointed again and again. Usually, we don’t tell her about something fun we’re going to do until right before we do it; that’s when we know its really happening. But, this house is a pretty sure thing and we are all happy to be dreaming about something that has nothing to do with cancer.

Tanner is feeling pretty good, considering the steroids. She goes in spurts where she seems to feel pretty good to times when she just doesn’t feel like doing anything but lie down. The past two days, I’ve seen the side effects from the Vincristine creeping in as well. Yesterday, her mouth started burning whenever she ate or drank anything. This morning, her jaw started aching and tonight, her upper leg is hurting so badly she is lying in bed right now, waiting until I can give her the next dose of painkiller in 20 minutes. I expect in the next day or two to see the awkwardness and difficulty running and climbing stairs to return. These side effects are like old acquaintances you wish would stay in your past – familiar, but not good for you. The treatment for this disease is cruel, even while giving us hope.

She finished her five-day pulse of steroids this morning; hopefully, she’ll start feeling better soon. By next week, we’ll start having to be a little more careful about getting out since the oral chemo she has been taking daily should start affecting her counts by then. But, tomorrow we are taking advantage of our freedom and having a girl’s day while Jake is at school. We are going to Panera after we drop him off to have her schoolwork time in a booth over bagels. Then, home to make a gingerbread house without little brother stealing all the candy.

I really hope Jake can continue going to school this month. He had such a good time on Tuesday and his Christmas program is coming up next week. We’ve been practicing Jingle Bells and he’s got it down cold so I hope he gets to have his moment to shine.

It feels like we are taking back our lives, little by little.

Love,
BethIMG_1307

When Dinner Out Becomes a Celebration

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December 7, 2009

It has been more than six months since Tanner has eaten in a restaurant. We have eaten outside on the patio of Jonathan’s twice, but never inside. Today, she wanted to go to Opry Mills mall and eat at the Aquarium restaurant. It has a huge fish tank in the middle and a diver often swims around and feeds the fish.

It was a great idea, because they both needed new shoes and I was so sick of bringing home shoes for them to try on and then having to take them back because they didn’t fit.

Tanner and Jake dancing on the stage at Opry Mills

Tanner and Jake dancing on the stage at Opry Mills

So, although it felt odd to be able to say yes to something involving a public place, I gathered us up and off we went. We had the best time. It felt so amazing to be out in public with both kids… so normal… only now it doesn’t feel normal. It was pretty empty when we first got there and they were able to run around as much as they wanted. They seated us in a booth off by ourselves at the restaurant and the kids had a really good time looking at the fish. Jake especially loved it; he was fascinated, especially when the diver appeared. Poor Tanner got really hungry waiting for the food to come (did I mention it is steroid week?) and was actually crying by the time it got there. Steroid hunger is not to be underestimated. She shoveled the food in like a ravenous wolf despite the fact that it had just come out of the fryer. I asked her if it was burning her mouth and she said, “Yes,” between bites, but never slowed down.

We even had ice cream sundaes for dessert. Why not?
photo_2
Despite the fact that she wasn’t feeling very good, she still wanted to get shoes and pajamas. It felt so weird to be in a store with other people. I kept having to choke down panic and remind myself to just soak it in. Even Tanner seemed a little anxious a couple of times and said once, “Is it okay that there are people around?” I assured her that we were fine, but that we needed to get out of the mall before it got too crowded.

Shark Boy and Lava Girl?

Shark Boy and Lava Girl?

She fell asleep in the car and napped when we got home then had a lesson with her teacher, Mrs. O’Hara. After dinner, we had planned to decorate the tree together. She was very excited and kept asking when John would be home so we could get started. But, by about 10-15 minutes into decorating, the steroids got the best of her and she begged me to take her to bed. Sad for her to not have enjoyed something she usually loves so much.

Jake, on the other hand, enjoyed himself immensely. He was an ornament hanging fool. True, he usually hung about six ornaments on the same limb, but he was very enthusiastic. He sang Jingle Bells as he went and was so cute.

Overall, despite the steroids, it was a great day. I wish John had been able to be with us at the restaurant so we could all have been out together. The steroids definitely impact her and all of us, but we’re trying to power through and not let them stop us from enjoying this freedom while it lasts. We have no way of knowing whether the 100% dosing of the oral chemos she is taking is the right dose for her until we go back to clinic in a couple of weeks and see how it affects her counts. If they are down, we’ll go back to being secluded until they come back up. The doctor tells us that it usually takes 2-3 months to get the dosages adjusted to keep her counts between 1,000 and 2,000. At that point, we will gain a lot more freedom; she should be able to go back to school and rejoin life.

By tomorrow, I suspect the steroids will take most of the day from her. Jake is going to school for the first time in a month. Tanner and I will probably lay around a watch movies and do our toenails. That’s probably as much as she will feel like doing. Sounds good to me; I’m tired!

Love,
Beth

Christmas Has Arrived!

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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

A Long Day at the ER

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November 22, 2009

Since Thursday, when we went in for clinic and Tanner’s hemoglobin was so low, we’ve been keeping a close eye on her for signs that it was dropping even further or that it was producing symptoms that made her uncomfortable. After asking me to take her to bed at 6:30 last night, she woke up this morning with a headache and was very washed out looking. We decided not to wait until tomorrow to take her to clinic, so John took her to the ER around 11 am.

They arrived home at 9 pm with fresh blood and platelets in her system, tired, but with rosy cheeks and red lips. Her hemoglobin had dropped down to 6.6 from 7.2 on Thursday (anything under 8 is grounds for a transfusion, but Tanner was not showing any symptoms then so we decided to wait) and her platelets were down to 28 (normal is somewhere around 300). So, two bags of platelets and one bag of blood later, she should be feeling a lot better. Her neutraphils have, thankfully, not dropped from Thursday, so hopefully those have bottomed out and will start going back up so she is less vulnerable to infection.

We weren’t surprised or too upset that she needed a transfusion; it’s almost expected during DI and Tanner has really been lucky that this is only her second transfusion since diagnosis. We’re just thankful that she hasn’t caught anything while her immune system has been so compromised the past few weeks.

The anemia didn’t slow her down a whole lot this weekend. Saturday, Jessica, our friend, babysitter and petsitter extraordinaire, came and played with the kids all afternoon while John and I cleaned out the attic and garage and went to lunch together at Puckett’s in Lieper’s Fork. We were playing at the elementary school playground next door to the house when Jessica got there and Tanner never slowed down until Jessica left. They danced, played wii, and pretended all the day long. I think Tanner was just happy to see someone else but John, Jake and I. It’s been a while.

After John and Tanner left for the hospital today, I shaved Jake’s head. He wanted to look like Daddy and Tanner. All those little curls in the trash can. He loved it, though! I thought it was so cute that he wanted to look like them.

Jake's new hairdo

Jake's new hairdo

It looks like it will be another “keep to ourselves” kind of week… at least until Wednesday when we get our next counts check. That will let us know whether we can see John’s family for Thanksgiving or whether we need to keep it simple here at home with just us. It would be great to see John’s family, but either way will be fine; the way I see it, we have a lot to be thankful for.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

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November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

Love,
Beth