Category Archives: friends

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

How Much Chemo Does it Take…?

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November 11, 2009 How much chemo does it take to keep a good girl down? Apparently more than Tanner has had, and that’s saying something. Tanner continues to feel good and her energy level is actually increasing, despite the fact that her counts are likely tanking. I tried to tell leukemia that it picked the wrong girl!

We played all morning at Liberty Park playground. She set up an entire Barbie neighborhood while Jake napped, we did some homework, she wrote two stories for her teacher, she had her lesson, ate dinner, played wii and then she read two stories to Jake before bedtime. I was tired, but she didn’t seem to be.

Tomorrow is clinic day. We’ll just go in for counts and an IV dose of ARA-C. Then, she’ll come home accessed again for another 3 doses of ARA-C, like last week. She continues to take 6-TG oral chemo daily until next Friday. Then, we are done with DI… yay!

Jake has a yucky nose so pray she doesn’t get it (or that I don’t for that matter, since I can’t seem to get a cold without getting bronchitis these days).

Also, special prayers for Madelyn, the little 3-year-old who was diagnosed with ALL when we were in the hospital last time. She is still at Vanderbilt and I know how tired her family is getting and how badly everyone wants to get home.

Tired, late, going to bed.

Love,
Beth

Courage

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November 10, 2009

Tanner, Jake and I went in search of an uncrowded playground yesterday. We ended up at River Park in Brentwood. There were a few little boys Jake’s age, but not really any one else around. Tanner and I sat on a dinosaur together and watched Jake play with three little boys. She was not wearing her wig… she hasn’t worn it for even one minute since she shaved her head… and had a Hannah Montana bandana wrapped around her head.

While we were sitting there, another Mom sidled up to us and tactfully said, “Where does she go?” She caught me slightly off guard, but only for a second before I replied, “Vanderbilt.”

She told Tanner she liked her bandana and then stood next to me as we watched Tanner run off to play. Then she said, “My son went to St. Jude, but finished his treatment at Vanderbilt; we lost him when he was 12.”

We hadn’t even exchanged names yet, but I already knew her. I knew the long hours she spent in hospitals, dosing out medicine, waiting for test results, soothing a sick child, wishing it could be her instead of him. I knew her without saying anything else. I knew her except for that hole in her heart, which I have had to face but never had to actually accept.

After telling her how sorry I was for her loss, I said, “I can’t possibly know what it feels like to lose a child, but I can imagine it… because I’ve had to.” She just nodded.

John and I have had to face the possibility that Tanner might not live at least twice; once when she was lifeflighted to Vanderbilt for a drug reaction and doctors could not tell us whether she would live or die; and the other when she was diagnosed with leukemia. It’s a feeling you can’t really appreciate unless it’s happened to you, just like the feeling of actually losing a child is something I’ll never truly understand, although I think I might have a better idea than most.

The thing that struck me about this woman, who had lost her son just 4 years ago, was that she smiled when she talked about him. She explained that just last weekend, they had hosted the Hoover Run for Hope in Brentwood, in honor of her son, Liam Hoover, and that they had raised over $40,000 to give to St. Jude and Vanderbilt to help families of children with cancer. She and her husband had found a way to turn their grief into something positive and she was amazing in her strength.

This Cancer Parent Club is not one I ever wanted to join, but now that I’m here I find I meet the most amazing people. Fighting this horrible disease can sometimes bring out the best in someone. It’s a by-product of facing your worst fear every day and trying to make the best of it. I’m better for knowing the people I have met through this process, including Michelle Hoover, Liam’s mom. I’m touched by the stories they choose to share and by the way they unfailingly put aside their own worry or grief to try to soothe mine.

My Mom sent me an email from a friend of hers that had a quote at the bottom that struck her as appropriate and meaningful and I agree:

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying… “I will try again tomorrow.” –Mary Anne Radmacher

Yesterday, a quiet voice sidled up to me at a playground and showed me how to keep trying even when everyone would understand if you gave up.

Love,
Beth

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth

The Good, the Bad and the Really Cute

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The Good, the Bad, and the Really Cute

October 29, 2009

We’ll start with the good news: the doctors believe Tanner is responding to the antibiotics and that we are on the right road to beating this thing. She is still having fevers, but they seem to be mostly pretty low grade and they are further and further apart. Thank God.

Then, there’s the bad news: I don’t think there’s any chance we will get home for Halloween. She has to be fever free for at least 24 hours and they want to continue giving her antibiotics by IV for a few more days and gradually take her down to oral antibiotics and see how she does before we go home. So… day 8 and still counting.

Here’s the Really Cute part: Jake came to visit today and the two of them sitting in bed eating bagels together was priceless. I could have cried. It was the most natural thing in the world and she was so motherly with him. He came in and said, “Hi Tanner. You not got any hair?” She just smiled and showed him the top of her head and said, “Feel it. It all fell out,” and that was the end of that. He just accepted her just like the big sister she is and moved on. John’s Mom also came and Tanner kicked both John and I out so she could be with Jake and her E.

She seemed to feel okay this morning, but was exhausted after Jake left and slept a lot. She seems worn out with being sick and the Zithromycin antibiotic they have her on is tearing up her stomach.

I miss my family. It has been more than a week since we have all four been together and John and I haven’t spent more than 20 minutes at a time together.

We have accepted the Halloween thing, though and John has come up with a great idea. We are going to ask our neighbors to keep their Halloween decorations up and let Tanner, Jake and a few friends Trick or Treat when Tanner gets home. Friends are helping to put together a flyer to distribute to the neighbors and go door-to-door asking for their help. On Halloween, they have a celebration in the hospital and do reverse trick-or-treating where the nurses and others come to the kid’s doors and give them candy. We’re going to bring Jake up here to “trick-or-treat” with Tanner and, hopefully, they will bend the two visitors to a room rule for that time so both John and I can be here with the kids. We figure we’ll have two Halloweens that way.

Please continue to pray for little Madelyn and her family. I saw Madelyn in the play room today (she is adorable) and she was doing well with her new port. Her parents continue to grapple with accepting what has happened to their child and dealing with the overload of information that they are faced with at diagnosis. It is such a difficult time and my heart breaks every time I see them. It is truly a club no one wants to join and I am so sorry to see another child and family start this rocky journey.

Tanner is asleep. A nurse is in hooking up her IV to start an antibiotic infusion. I’m going to put on my jammies, watch a movie on the computer (thank God for the laptops we all have) and go to bed.

No fevers, no fevers, no fevers….

Love,
Beth

Waiting for a Break

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October 25, 2009 Tanner’s fever broke sometime late last night and she remained fever free most of the morning, raising my hopes that we might be done with the fevers. Unfortunately, I was wrong and she spiked another fever at lunchtime. But, I think we’re making progress. We went fever free for a while and the fevers seem to be responding well to the Tylenol again. In fact, I believe she is fever free right now while she sleeps, so we’ll hope that continues.

Doctors told us today that she also has a sinus infection and added Zithromycin to her growing list of antibiotics she is taking. They expect we’ll be here the rest of the week and we are praying we’ll get home in time for Halloween. It breaks my heart to think she might miss it. She’s been really excited about it and has her Addams Family Wednesday costume all ready.

John came to the hospital this afternoon so I could go home and see Jake for a little while. I got the best hug from him when I came home. He is having a ball with his grandmothers, but this is so hard on him, too. John and I just pass through briefly and he keeps asking me where Tanner is and when she is coming home.

Please pray for Madelyn, a 3-year-old little girl from Franklin who was diagnosed with ALL last night. They live within a mile or so from us. She is on our floor and we met her dad today briefly and offered our help. I know how helpful Lily’s Mom, Larisa, has been to me and how great it is to have someone who is a little ahead of you in treatment to talk with. I caught a glimpse of Madelyn’s Mom today trying to calm her screaming child. I recognized myself in the look on her face… terrified, overwhelmed, devastated. Diagnosis is such a hard time and I hope that we might be of some comfort to them once they get their heads above water.

I’m going to sleep dreaming of a feverless tomorrow. Thanks for your thoughts and prayers.

Love,
Beth

Still Hanging in There

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October 25, 2009 Tanner’s fevers continue, in fact, they seem to be defying the Tylenol now. Doctors are pretty convinced it’s viral since it’s not responding to antibiotics and her white counts have gone down since yesterday, an indication she is fighting something viral. Her hemoglobin was up a little bit, though and her neutraphils had made a big jump – from 190 to 450!!! Unfortunately, neutraphils fight bacterial infections, which Tanner apparently doesn’t have. So, we’re happy their going up, but they don’t help much in this situation.

She also seems to feel worse today. She was much more lively yesterday. So, I don’t really know where we are… I guess just more watching and waiting.

She and I sat and read all the comments about her new wig and hat today… it really made her smile. Thank you so much to everyone who has been so kind and had such good words of wisdom for her.

Tomorrow, we will get the remaining wispies shaved off of her head. The hospital has an approved hair shaver that, I guess, is extra careful about cutting heads. Hopefully, that will make her head less itchy.

Hopefully, the fever will break soon.

Love,
Beth