Making Lemonade

March 25, 2011

It’s been spring break this week for both Tanner and Jake. Since Tanner had chemo this week, we didn’t go anywhere, but decided to make the most of our staycation by scheduling a fun activity every day.

Monday, we played in the gorgeous spring weather we were having earlier this week (not so much now!) at a playground with some friends. Tuesday, we went to the Tennessee State Museum. They were having an Egypt exhibit, and Tanner is fascinated with Egypt. Turns out, I think we enjoyed the state history even more. Tanner and I have been reading the Little House on the Prairie books, so it was fun seeing the pioneer history fleshed out at the museum. Tanner kept recognizing things like a butter churn or a yoke for oxen that we had read about in the books.

Jake totally cracked us up because he was making up a story for everything he would see, and tell it in this really serious voice.

“Let me tell you about this,” he would say. “This is boat and it’s tied up and the ropes made it not sail right.”

“Was the boat okay?” I asked.

“Nope, it sank to the very, very bottom of the water with the fish,” he said seriously.

Tanner and I started asking him about everything we saw, just to hear what he would make up.

Wednesday was clinic day, but we made plans to see a movie in the afternoon with friends. On the way home, we stopped to get gas and buy some candy for the movies (yes, I realize that’s against the rules). Unfortunately, when I tried to start up the car to go, it wouldn’t. The kids and I got out the car (in the rain of course) and walked across the street to a Firestone and got them to tow my car, and called John to pick us up. I had seriously had it at that point. But, the men at Firestone were so nice and John was, as usual, like a breath of fresh air. He cheered up the kids and resuscitated me with his infectious enthusiasm. “We’re making lemonade, people!” he yelled in the car. “I never get to see you guys in the middle of the day… I love it.” We went home to let the dog out and then dropped John off at work, still on schedule to make our movie… until Anna Lynn called to tell me it was sold out… really.

Now, I was just mad… until I started laughing. I mean, seriously, what else can you do at this point? I had worked too hard to get us to this stupid movie. Thankfully, our friends were game and we found another movie theater playing the same movie an hour later. We prevailed!!! We filled almost a whole row of the movie theater and the kids laughed out loud at the movie.

Thursday, the kids got a much-needed break from one another with separate playdates. Tanner went to a friend’s house and Jake had a friend from school over. Then, Tanner, John and I went to the Leukemia and Lymphoma Society Man and Woman of the Year campaign kickoff where Tanner was officially announced as Girl of the Year along with Jack Woods, Boy of the Year. They debuted the video we had shot a month or so ago. It’s a great video, although Tanner is uncharacteristically shy in it. This was taken not long before we decided that she needed medication for anxiety. You can see her in this video regressing to babyish talk; very unlike her. Just underscores for me that we made the right decision.

In contrast, last night she was working the room, full extra-large personality in play. The event last night was pretty grown up at a nice restaurant and at one point, John and missed her. We thought she was sitting at the table playing with John’s phone. Instead, we spotted her across the room, standing on a chair, talking animatedly to three men, who were laughing and talking back. Then, the photographer asked to take a picture of them. They did one serious shot and then Tanner got them to all make silly faces. John said, “Should we go ask what she was talking to them about?” I paused and said, “No, I think I’d rather not know.”

Here’s the video:

2011 LLS Boy & Girl of the Year from Nathan Thompson – Disegno Video on Vimeo.

And, today, we had big plans to see the marionette show at the downtown Nashville library. The Whitlers were meeting us there and everyone was excited. The kids were playing on computers in the library waiting for the show to start when we figured out they didn’t have a show today (something I did not see on the Website). But Ron Whitler (Tanner Time’s blog host), who is a long-time friend and from the same school of lemons as my husband, didn’t miss a beat and just said, “We’re game for whatever, let’s go to lunch.” So, we went to Margaritaville and had a great time.

So, I want to thank all the people who helped me make lemonade this week, including Tanner, who has been a trooper despite not feeling very well from steroids, and Jake, who never fails to make me laugh. I am truly blessed by the most amazing friends and family.


Better Days

Things are looking brighter the last couple of days. After lying awake half the night on clinic day night worrying about the crazy amount of medicine that had put in my child in one day, and what the effects of that medicine would be, I woke to a very pleasant surprise… Tanner did not feel all that bad and… was pleasant. For the first time in months, she didn’t fight with me about getting ready for school… she actually smiled and said, “Okay, Mom.” Wow. Seems that anti-depressant works a lot faster than the doctors suspect.

After just three days on the anti-depressant, Tanner is a different child. John came downstairs on Friday night after putting her to bed and said with wonder, “She actually seems happy.” And right then we realized how much anxiety and fear and frustration and anger our poor child had been carrying around for quite some time. All the misbehavior (well, maybe not ALL of it) was really just misery. All the frantic, impulsive, over the top nuttiness was anxiety. I think her unhappiness happened so gradually, we just didn’t realize how bad it had gotten. It didn’t really look like unhappiness; it looked like combativeness. And, mercifully, it’s gone now, replaced with a peacefulness we haven’t seen in a long, long time.

Theoretically, it should only get better. She is on steroids and the extra chemo has set in and she doesn’t really feel all that great and even so, we see an improvement. Also, she is not even taking the full dose of the medicine; we will work our way up to that in a few weeks.

It makes me sad and happy at the same time. Sad to know how much all this has affected her and how heavy her burden has been. But, happy to know this is helping her regain her optimism and her true personality. It’s been a nice couple of days to hope for the best.

Then, today, another gift. Tanner auditioned last night for a part in Sleeping Beauty and today we found out she is going to be… wait for it… Sleeping Beauty (aka Briar Rose and Princess Aurora)!!!!! We couldn’t be prouder and she couldn’t be happier. We are so thankful to Act Too Players for believing in Tanner and giving her this chance. The play is in May… we’ll put out dates as soon as we know them.

Hope your weekend is as going as well as ours.


Laying Low

June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.


We Made It!!!!

May 10, 2010

Our drive went well and we arrived yesterday at 6pm in Give Kids the World Village, the resort just for Wish kids. It is truly a magic place. There are probably 50-75 wish kids here with their families and 8,000 volunteers work together with a small staff to make every moment special for these kids who have been through so much.

Just a few highlights:

• The present fairy comes every day and leaves gifts for the kids. Today we got a special Give Kids the World Village Candyland game.

• The characters from three theme parks come here so the kids get more undivided attention. This morning – Goofy, Pluto, Mary Poppins, and Mickey and Minnie.

• The Mayor of Give Kids the World Village is a large rabbit and he and his wife, Ms. Merry are here every night. Tanner rode the carousel with Ms. Merry two times tonight and is so smitten with her. We will call tomorrow to arrange for Ms. Merry to tuck Tanner and Jake into bed one night this week.

Tanner and her new friend, Ms. Merry

• There is a putt-putt golf course, splash park, train, playground, magic castle, theatre, etc., etc., etc. All right here at our beck and call.

• There is an activity every night. Last night, there was a Candyland party on the playground with a DJ and Tanner danced the night away while Jake played on the playground. We even played a giant game of Candyland. Tonight, there were therapy dogs to pet, a Kinkachu and an armadillo to see, a man with a telescope showing you the sun and a party that we didn’t attend because everyone was tired.

• All of our meals are free here and there is ice cream all day long. We had ice cream right after breakfast this morning!

• Tanner had her nails and makeup done at La Ti Da spa and she and Jake both got airbrush tattoos. Again, all done by volunteers.

• The list goes on an on, I can’t say enough about these amazing people and how fun it is here in the Village before we even get to a theme park.

We went to Sea World today and saw the Shamu show and rode some rides. Everyone had a great time. Tomorrow, we’re heading to Magic Kingdom tomorrow to see the Princesses, Lightening McQueen and Mickey Mouse.

So, here’s the only downer… Tanner is still coughing… and coughing… and coughing. It definitely seems worse and it took her a very long time last night and tonight to get to sleep because of the coughing. But still, no fever, which is what they told us to look for. So, we don’t know anything else to do but keep going… carefully. We are trying not to wear her out and forcing her to take naps to try to avoid worsening her immune system with fatigue. She has had a coughing virus before that she got over without incident, so we’re hoping that’s what it is. We’re going to Magic Kingdom tomorrow because we’re terrified we’re going to end up in the hospital and that’s the theme park we would most want to go to if tomorrow is our last day. So, pray for healing for her.

That’s about it. Good night!


Disney Here We Come!

May 9, 2010

Well… we made it this far with no fevers and we’re on our way to Disney! As usual though, things haven’t gone exactly as planned.

Saturday morning, Tanner woke up sounding a little worse and we really struggled with what to do. If we canceled, we wouldn’t be able to reschedule until fall. If we went, we risked ruining the trip with a visit to the hospital and exposing her to all those germs when her immune system was compromised by possible illness. Ughh. We hate these decisions. We decided to take her to the pediatrician’s office and see what they thought. They listened to her lungs and checked her ears. ALL CLEAR!!! Then, they were kind enough to run counts for us. They were elevated… boo! That indicates she is fighting something. But, overall, the pediatrician felt like she was okay to go but suggested we check with her oncologist. So, I called in to clinic and gave them all of our information.. they also said, “Go!” But, in asking about whether we were exposing her to undue risk by taking her to a park with thousands upon thousand of people, they said the airplane was really our biggest risk.

After much deliberation, we decided to drive to Disney instead. It was just one risk we could eliminate. So, we called Make-A-Wish to cancel our flight, packed up and got the car tuned up within three hours, and got on the road yesterday!!!! Hurray! We drove last night to my parents’ house outside Atlanta and stayed overnight. This morning, we are on our way and should be there by 6 pm.

Tanner doesn’t seem any worse; she really isn’t coughing too much this morning. Everyone is super excited and we’ve got our fingers crossed we’ve made the right decision.

Mickey Mouse… here we come!


New Beginnings

April 4, 2010

So, Tanner did have a urinary tract infection. Mercifully, we didn’t have to go to the ER. The oxycodone held her over until morning and we were able to drop by the pediatrician instead. She is on a course of antibiotics and feels fine now. But first, we went to the Easter Egg hunt at our church. It was really fun and the kids had a great time.

Ready to hunt some eggs

Then, I ran away, as promised. I didn’t actually go to a movie, but I did shop (okay, for the kids, but it was still shopping). The important thing was that I was gone for hours and came back feeling much, much better. We grilled up some dinner and ate outside (it was such a beautiful day) then, dyed Easter eggs and wrote notes to leave for the Bunny. Tanner finally went to bed on time. The terror seems to have subsided and she got a good night’s sleep. And, I got to sleep in my own bed.

This morning, Tanner was up at 6:20 rearing to go to hunt those eggs. We woke Jake and they had a big egg hunt and ate chocolate for breakfast. It’s not Easter unless we’re all eating Peeps and Reese’s Peanut Butter Eggs before 7 am.

Then, drumroll please… we went to church… for the first time in 10 months. It was wonderful. The service was beautiful and Tanner was so cute singing along with the music. Jake made sure to let the entire congregation know (more than once) that he got a Batman and Mr. Freeze in his Easter basket. We went to breakfast at Cracker Barrel on the way home, so it was a really nice morning.

In their Easter Finery

We spent almost the entire rest of the day outside. We played with neighbor kids and did some yard work and just, generally, enjoyed the beautiful weather.

So, I feel renewed and ready to face a week of spring break. We’ll make the most of it. We have plans to swim, have play dates and maybe, just maybe, go to the zoo (although that may be too crowded to venture forth).

Happy Easter!


Snow, Sledding and Steroids

January 27, 2010

I moved to Nashville in 1994 from Philadelphia, where, as you can imagine, it snowed quite a bit. In the nearly 16 years since, this is the most snow I have seen! We got a whopping 4-5 inches of snow, which is just enough to have an awesome time sledding.

John’s Mom, Ann, came on Thursday and had a special afternoon with Tanner after clinic. Friday morning, I left the kids in her capable hands and ran out at 8 am to:
1. search for a sled (I knew it wasn’t going to happen, but I couldn’t live with myself if I didn’t try)
2. search for waterproof gloves for both kids
3. search for snow boots for Jake
4. Finally join the snow panic and ransack what was left of the stock at the grocery store so we could “hunker down” for the weekend

I would love to say that after three hours and eight stores, I was successful, but the only thing I came home with was food. No sleds, boots or warm gloves within 100 miles. Retailers must pray for snow in Tennessee.

So, later that day, in the sleet and snow (aka “wintry mix”) Tanner insisted on going out to meet some friends in the school field. We bundled up and I put three pairs of crappy gloves in my pocket so I could replenish her gloves when they got wet. It was in the 20’s and very, very cold and windy.

The kids played for 15 or 20 minutes with me replacing Tanner’s knit gloves every time they got wet. My hands were cold in ski gloves so I couldn’t imagine how she was standing it. But, after we went through all three pairs, she had a melt down and I had to give her my gloves and carry her all the way home and put her in a hot bath.

That’s the way it goes with Tanner these days. She plays so hard and with such enthusiasm, but it usually ends rapidly when she tires out. She is on steroids this week, which exacerbates her fatigue. She lives life in bursts… a burst of energy… a burst of exhaustion. I worry about how she will do at school. But, I try to remind myself that some school is better than no school and we’ll just let her do what she can.

The day after the big snow, we all went sledding with some neighbors and had such a good time. It was Jake’s first time and he LOVED it. I still have my old Radio Flyer sled from childhood and we took that and then shared our neighbors’ plastic sleds. Usually, the runner sled won’t work here, but we had freezing rain on top of the snow and, after waxing up the runners, it flew! I didn’t take my camera, but two of our friends had brand new fancy cameras and took lots of pics, so I’m sure they will send me some I can post (hint, hint Ashley and Molly).

We have two more days of steroids. She has handled them pretty well so far; some crying and fatigue, but she’s powered through a lot of it. We give her a lot of grace and hugs, remind her that it’s the steroids that make her feel this way and let her rest and watch more TV than normal. When she’s had enough, she asks to go to her room alone and watch movies on her computer in bed. We’re learning how to find a workable balance during this week. We’ll have 19 more steroid weeks, so it’s important we figure out the best way to get through the week without letting it totally halt our lives.

If school ever reopens this week (it’s already cancelled for tomorrow), I’m supposed to meet with a group of folks over there so we can come up with a plan for Tanner to attend school safely. She will need some special concessions, obviously, and we will all pow wow to figure out how to best meet those needs and how to protect her from germs as much as possible. The school has been so super and I know they will do everything they can to help.

The new house renovations are going really well. It looks like a house again instead of a demolition zone. Carpet and tile this week. Finishing hardwoods next. Then, finally, the long-awaited kitchen redo. If all goes as planned, we’ll move mid-March. Then, an empty house to sell. Hmmmm.

Anybody want to buy a house in historic Franklin, TN?


Big Things

January 26, 2010

We spent Saturday night at one of our favorite places with some of our favorite people. We went to the circus!!! I LOVE the circus. I would go if I didn’t have kids and so would John. I had put it on our calendar a month or more before, but was struggling with whether it was safe to take Tanner into that crowd of people. It’s one thing to be at a restaurant with other people in the next booth, it’s another to sit with people who may or may not be healthy on all sides of you.

John’s company, Franklin American Mortgage Company, made the decision easy. They gave us their suite so we could go without worry and invite friends, too. We had an awesome time with two other families. It’s a big thing for Tanner to be able to do something like this… and Jake, too. We realized at the Circus that Jake has experienced a lot less than Tanner at the same age because he’s been sheltered due to our situation. He was super excited!!! We all laughed at him because he just kept jumping up and down and screaming at random moments because he was so happy.

Thursday night will be another big night. Two representatives from Make a Wish are coming to interview Tanner about her wish. She is so excited, but very conflicted. She really thought she wanted to go to Disney World, but now wants to maybe meet the cast of one of her favorite TV shows and ask to be in an episode. Decisions, decisions. I was hoping for Disney, but whatever she wants will be fine. I just want it to be special for her. It will be interesting to see what she comes up with.

And, Thursday morning is clinic day. It has, unbelievably, been a month since we have been to the hospital. Surreal. She will get a dose of Vincristine in her port and see the doctor. She also starts her monthly five-day steroid pulse.

We are hoping her counts have remained between 1,000 and 2,000 so that they don’t raise her chemo levels. No more chemo, please. Also, if her counts have remained steady, maybe they will clear her to go back to school.

John’s Mom, Ann, is coming with us to clinic on Thursday and then taking Tanner to the movies afterwards. They are going to spend the day together. Tanner is super excited.

Tanner continues to feel really good most of the time. She has periodic nausea and body pains and fatigues more easily than normal, but mostly seems like any six-year-old. Still, the chemo is there. She got sick yesterday morning for no apparent reason that I could figure except the chemo. Weird since Tanner only got sick twice during all the chemo she has received. But, a reminder that even in maintenance, the chemo is still there, still poisonous, still eating at her.

Still, I’ll take maintenance over the past six months any day. The freedom that it brings, the ability for Tanner to regain strength and stamina. The possibility of school and friends.

Big Things… Good Things… Hopeful Things.


A Blizzard in Tennessee

December 7, 2010

No point in posting yesterday… just would have been another steroid rant. But today was a totally different matter. It snowed… Nashville-style, which translates into a ½ inch dusting of snow! School was cancelled the night before (yes, before it even started to snow) and we expected to wake to 2-4 inches. Jake woke up first and he and I pulled back his curtain to peer outside hopefully, in search of the much- anticipated snow… NOTHING! Tanner was really indignant.

But, by mid-morning it had started to snow and we started the long process of suiting up for a snow walk. After getting officially bundled up, we met Corinne and the gang over at the school next door. The kids found some ice to slide on and traipsed all over the field, our friends’ golden doodle romping happily in circles around us.

We threw sticks in the river, jumped on icy patches in the field until they cracked, piled up sticks and pretended we were making a fire and were joined by some other neighborhood friends. I expected Tanner to peter out early since she doesn’t always regulate her temperature very well and because she had just finished steroids and had felt terrible and seemed weak the day before. But, as always, she surprised me. We stayed out, in sub-30 temps for more than an hour. Jake actually begged to go home first, but everyone stopped on the way home to pepper the neighbors’ driveway with snow angels. Jake had never made a snow angel before and was delighted.

We came home and had hot chocolate with a LOT of marshmallows. Jake skipped the hot chocolate and just ate a cup of marshmallows. Boy, can we make the most of a ½ inch of snow in Tennessee!

I, believe it or not, appear to have pink eye. I’m so disgusted to be sick in some way again I just can’t tell you. My immune system is pitiful this year. I think it makes a serious case for the effects of stress on your body.

So, we’ve made it through the first rough week of the month. Each first week for the next year and 8 months will be difficult – Vincristine, steroids, methotrexate. But, the next three weeks should be easier, so that’s something to be thankful for.

No school again tomorrow. Ice. Not that we would have gone to school anyway! But, that means friends at home to play with.