Category Archives: gratitude

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

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

Bye, Bye DI !!!

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November 18, 2009

IMG_1286It’s here. Tomorrow is the last day of DI… the last day of the most intensive part of leukemia treatment… the last day before we enter LTM (Long Term Maintenance)… a day we have been working towards for six long, grueling months. I can’t believe it’s here.

We’re celebrating. I made t-shirts for Jake, John, Tanner and I and we are going to wear them to clinic tomorrow. I think we are also going to pass out something to the staff – I’m not sure what yet – maybe donuts? — to thank them for making this journey with us and for, literally, being our saviors.

John is picking up a cake on the way home from work tomorrow so we can celebrate with a special dinner. Depending on how her counts turn out tomorrow, we may invite some friends, but it’s not likely; we expect her counts to be low.

So, here’s how our friends and family can celebrate with us. Send a comment to Tanner congratulating her on the last day of DI. I want her to open up Tanner Time and Friends of Tanner and see how many people love her and realize what a big accomplishment this is.

We’ve really been celebrating all week. We’ve been visiting playgrounds and stopping by church to drop something off and getting to see the whole church staff (aka wonderful friends) and giving them hugs. Tanner got to spend the day with Aunt Beth today at her house (I think it must have magical properties the way our kids plead to go there) while Jake and I played some mean wii Star Wars. We’ve just been finding ways to remember how great it is to feel good and have the energy to have fun.

Yesterday was a great day. In fact, it was a ROGER DAY!!! Roger Day is a children’s recording artist who is big time at our house and he was so nice to stop by and bring Tanner his newest CD, Brain Freeze. It’s AWESOME!!! If you’ve been following our story long enough, you might remember that Roger came to our house back in July to have a small concert for a handful of kids and we had the best time. He is a great entertainer and a great person and he made my kids’ day.

Tanner and I in our new hats

Tanner and I in our new hats

We had another visitor yesterday as well. My friend Pat dropped by with hats and chicken noodle soup… the perfect combo. She had seen this adorable pink fuzzy hat for Tanner and brought it for Tanner and a hat for me, John and Jake, too. What a nice surprise. When she left we noticed a little gift bag on the front porch that contained an envelope full of cards from a 1st grade class at Tanner’s school. There were pictures of each child on the card and Tanner loved reading them and remembering all her school friends. Then, John came home with two new wii games sent by a long-distance friend who has recently relapsed with lymphoma. Mind boggling to think they thought of us when they have so much on their own plates.

It’s a lovely world where hats, chicken noodle soup and Roger Day all show up on the same day. Help us celebrating a life worth living tomorrow.

Love,
Beth

Clinic Day #21

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I love this picture of Tanner. I think she looks so at peace with who she is.

I love this picture of Tanner. I think she looks so at peace with who she is.

November 12, 2009 Today was our fastest clinic day ever, which seemed only fair since last week was our longest! Tanner’s counts had dropped, but not terribly. Her neutraphils were down to 900 from 1,100 last Friday, which means she is neutrapenic, but is still so much better than I expected. The chemo takes 7-10 days to drop counts and we started back on the at-home IV ARA-C chemo today, so the doctor warned us that in the next couple of weeks, we should expect to see those counts go down significantly. We will administer the ARA-C at home for the next 3 days and she will continue to take the oral 6-TG until next Friday. The next two weeks, we just go in for counts and to be sure she doesn’t need a transfusion. If her neutraphils are back up to 1,000 at week 3, we will start Long Term Maintenance on Dec. 4. Unbelievable!

The doctor said we will need a couple of months of maintenance under our belts for her to be cleared to return to school. Tanner reminded him that we also couldn’t go back if flu season was bad (she really did!). So, maybe February… that would be such a gift.

After clinic, we went for shrimp scampi at Captain D’s (Have I mentioned her recent obsession with shrimp? It was pizza for a while, now shrimp and I think we might be moving on to chicken noodle soup!) and stopped by John’s office so a few co-workers/friends from out of town could come down and give her a hug. Then, we went to pick up Jake at Aunt Beth’s house. On the way home, she fell asleep in the car and stayed asleep for a while after we got home. She had a playdate with Corinne and Laurel and was tired again at bedtime. Maybe yesterday wore her out!

Anyway, it was a good day and a good clinic visit. Jake continues his cold and I continue to be terrified that Tanner will catch it. Have you ever tried to keep a two-year-old from spreading his germs? Impossible.

Thanks for all the love and support coming our way. We are carried by the love, prayers, good wishes and acts of kindness of friends and family. People never seize to amaze me. Last week, I looked out the window to find my neighbor blowing the leaves off of the front lawn. When he was finished, I went out to thank him and give him a hug. He is a cancer survivor himself and while we embraced he said simply, “I just want to do something to help.” I don’t even know what to say about this and the countless other kindnesses that have come our way. Thank you doesn’t seem like enough.

Love,
Beth

Still Feeling Well

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November 9, 2009 Despite being somewhat fatigued, Tanner continues to do well under this deluge of chemo, which proves that I will never understand this whole process. Seems like the simplest thing (steroids) takes her completely out and then she does well under the heaviest treatments. She definitely does not have her normal energy level; she spends a good portion of the day sitting or lying down, but she is still able to get out and ride a bike or play briefly on a playground. She is having a little bit of nausea, but it is very controllable with zofran. We are so grateful.

Although we’re ecstatic she’s feeling so well, there is still this weird creepy feeling; we know this chemo is designed to kill everything that hasn’t been killed to date, so her counts are most certainly plummeting, despite her feeling pretty well. These are dangerous times as she will be very susceptible to infection. We are holding our breath to see if we can make it though the remainder of DI (Delayed Intensification) without another hospital stay or a life-threatening infection.

I’ve been administering a daily IV chemo called ARA-C to Tanner and she is taking a daily oral chemo (TG) as well. Tomorrow is her last dose of the IV chemo until Thursday, when we will go to clinic. There, they will check her counts and give her another dose of ARA-C. Then we will administer a dose-a-day for three days afterwards. She will finish taking the TG oral chemo in 10 more days and then that is the end of chemo for this phase. The remaining two weeks are for counts recovery as neutrapenia (neutraphils below 1000) is described by the doctor as “inevitable” during this phase. Tanner’s neutraphils on Friday were at 1100, just 100 above what they needed to be to start this last two weeks of treatment, so we expect them to be very low by the end of this week. Scary stuff, to say the least.

So, we’re laying low at the Page house. We’re really not taking her anywhere these days; just trying to make it through to long-term maintenance and, hopefully, a great increase in freedom. We’re even keeping Jake out of school when her counts are low to try to prevent him bringing anything home to her.

I didn’t realize how little actual chemo she had left in this phase until today. The chemo roadmaps they give us are sometimes a little difficult to read and I thought the chemo would last the whole next month, but the last two weeks are reserved for counts recovery so we can then begin Long-Term-Maintenance. I had a moment of disbelief… could this day we’ve been working towards since June be almost here? I want to celebrate, but would seem to be tempting fate. It’s just 10 more days of chemo, but her counts will take a little while to recover so it’s a month-long or more period where she will be very susceptible. It’s a little like a minefield and I feel the tension of making our way through with setting off a bomb.

So, we’ll do what we have done so often during this whole process… we will choke back our fear and take it one day at a time.

Maybe we should just start over and ignore everything I’ve written prior to this tonight. Here’s my new post: Today was a good day.

That’s all we need to know for now.

Love,
Beth

Happy Halloween!

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Tanner as Wednesday Addams

Tanner as Wednesday Addams

October 31, 2009 Did you hear about the parents who let their child go trick-or-treating on a cold night after just getting out of the hospital for a nine-day stay for pneumonia?!!! Oh, and she has leukemia, too!

It sounds so bad on paper, but it was really fun. If there is one thing I have learned from this whole experience it’s that you have to grab your moments when they present themselves for you never know when they will be taken from you. Apparently children know this piece of wisdom without being taught. Tanner seized the moment, for sure, tonight.

Tanner and John got home from the hospital today around 1:30 with chick-fil-a for everyone. We ate, Tanner’s stomach started to hurt from one of the antibiotics she is on, John and I spent 20 minutes trying to be sure we were administering her IV antibiotic correctly and she promptly fell asleep for several hours. That’s when the adults decided that caution would be prudent. That she might just be too tired to go out for Halloween tonight. That maybe we should do it the next night with a good night’s rest under our belt and one more day for her to recover. So, John runs all around the neighborhood asking the neighbors to save some candy for trick-or-treat on Sunday night. People were so sweet and willing to help.

Then, Tanner wakes up. No way was she trick-or-treating the night after Halloween! We warned her that the doctor said she had to wear a mask… that did not dissuade her at all. So we hustled up, ate some dinner, hurried into our costumes and met Tanner’s friend Olivia and her Mom, Jennifer, for some power trick-or-treating.

Jake, Olivia and Tanner

Jake, Olivia and Tanner

We brought the wagon because we didn’t think she would last long. She’s been in bed for 2 weeks, after all. But, as always, she surprised us with her determination. She probably made it to 15 or 20 houses before climbing the steps became too much for her and she started just stopping on the sidewalk and letting me go to the door to collect her candy. She eventually got into the wagon with a blanket around her and rode the rest of the way in great spirits.

I can just hear myself trying to explain our parenting skills to the doctors when she shows up with pneumonia again from being out in the cold (just kidding, they told us she could go). But, it was one of those moments where I realize that the stubbornness in her that has long driven me crazy as a parent is starting to serve her well. What had been just strong-willed obstinence as a toddler and preschooler is morphing into tenacity and perseverance as a kid. I was so proud of her.

IMG_1245She and Jake and Olivia had a ball. They looked so cute and got a LOT of candy. When we got home, Tanner said it had been one of her favorite Halloweens. She said, “This was a great night.”

I guess having so many things taken from you makes you really appreciate the things you get… or, in Tanner’s case, the things you reach out and grab with sheer determination and grit.

Happy Halloween!
Love,
Beth

P.S. If you see Jake, do NOT tell him he was a cute fireman. He was Billy Blaze from the Rescue Heroes, thank you very much!