I’m trying something… I created a photo album on Facebook and I think this link will allow you to look at the pictures whether you have a Facebook account or not. Let me know if it works!
https://www.facebook.com/media/set/?set=a.10150194752809014.330293.89436949013&l=5d3a4a89e9
April 28, 2011
Okay, so yesterday was clinic day; I just got too tired to write about it. John took Tanner to clinic yesterday morning to give me a little break from the hospital scene. I wish we could give Tanner a break from it, but guess that’s not possible. Her neutraphil count was up quite a bit, at 2,200, but the steroids she had just come off of will artificially inflate neutraphils, so it’s hard to say what it will be once it comes back down, but Dr. Mixan felt good about it in general so we don’t have to go back for two more weeks.
John broke the news about Cari not being Tanner’s nurse any more in the car on the way there. She was very sad, but handled it as well as we could hope.
Hunting Easter Eggs is exhausting!
I’ve had a bit of a break this week. Jake is at my parents’ house and is coming home tomorrow. It’s given me three days by myself in the house for the whole time Tanner is at school. I really needed a little time to regroup and get some things done. It’s been nice to just go at a project without worrying about picking Jake up from school or being interrupted 1,000 times. Thanks to my parents for taking him; he’s having a ball playing golf and being spoiled. Nice for him to get a little break from the stress of our house as well. I miss him though, and am ready for him to come home.
Tanner and I went to a champagne toast at Flemings on Monday for the LLS Man and Woman of the Year Campaign. She didn’t really feel super as it was the last day of her 5-day steroid pulse, but we gamely went out and bought new dresses and headed downtown. I’ve been so proud of her at all these events; she’s really risen to the occasion and showed a lot of grace and poise at what have been very adult events. I think she understands how important this commitment is (and it doesn’t hurt that I’ve bought her a new dress for almost every event!).
People sometimes make the comment to me, “I don’t know how you all do it.” And, most of the time, I respond by saying, “You just put one foot in front of the other,” which is true. I mean, really, what choice do you have, really? But, I was reminded at the MWOY event the other night, that you really are carried through this journey by great friends, family and even people you don’t know who support you and love you through it.
There are 13 candidates for Man and Woman of the Year. Some of them have a personal connection to blood cancer and know first-hand how important it is to find a cure. Some are just caring people who have recognized a great cause and are giving enough of their time and energy to agree to take it on. Either way, they are supporting us and all the other families who have, unwillingly, embarked on the road to beating a blood cancer. Their commitment is an inspiration to me; it makes me realize we are not alone. There are lots of people who care and who recognize that this disease needs to be eradicated before it affects even one more family. To say we appreciate what they are doing is an understatement; frankly I don’t really know to thank them properly.
We spent Easter with our church family... and then John's family
Tanner has been feeling really good lately. The reduced chemo level she is on because of her low counts last month is evident. She’s only on 50% dosage at this point. Although I love that she’s feeling so good, it makes me nervous for her to just be on 50%. I assume if her levels are good next visit, they’ll raise her up to 75%. We’re delaying her next chemo a week to accommodate her Sleeping Beauty shows. She would have had chemo two days before her first show and been on steroids for all three shows. Dr. Mixan was nice enough to let us delay a week until the show is over and school is out so she won’t miss any of the end of school fun.
Speaking of Sleeping Beauty, if you want tickets but haven’t gotten them yet, you can order them by calling the Boilerroom Theatre at 794-7744.
Love,
Beth
April 13, 2011
We got to meet Champ at Medical Play!
We really didn’t expect Tanner’s counts to come up to 1,000 or above today. Generally, counts below 500 take a while to come back up so we were genuinely surprised when Tanner’s neutraphils came back at 1,040 today!!!
I told Tanner, we high-fived in celebration and then she immediately asked, “Can I make to school for recess?” Too funny.
We missed recess, but we did high-tail it back in time for her to spend the afternoon happily at school. At pick-up, she bounced to the car with a big smile on her face and asked if we could play outside when we got home… which we did.
We got to see one of Tanner’s all-time favorite nurses today, too! Blaire was Tanner’s ER nurse that first touch-and-go night when she was lifeflighted to Vanderbilt two years ago. Then, she happened to also be our nurse when we first heard in the ER that Tanner probably had leukemia. Traumatic situations make for tight bonds. Blaire is now a advanced practice nurse in the ER ICU, so we haven’t seen her in a while (thankfully). We loved seeing her; she still keeps up with Tanner through Tanner Time.
Tanner and Blaire in 2009
So that’s the good news… here’s the part that keeps me from celebrating too much, though. We started back at 50% chemo dosage today and go in next Wednesday for her monthly IV Vincristine and a lumbar puncture with methotrexate… her Final Spinal. No rest for weary bone marrow, I tell you. Makes me a little nervous to pile so much chemo on as soon as her counts recover, but this is how cancer treatment works. You don’t stop for much of anything. Call us cautiously optimistic.
Many of you have been asking about Sleeping Beauty tickets. They went on sale today. You can get tickets by calling the Boilerroom Theatre in Franklin at 615-794-7744. The shows are on Saturday, May 21 at 3 pm; Sunday, May 22 at 7 pm; and Monday, May 23 at 7 pm. The theater is tiny (holds about 120) so call quickly for tickets. You’ll want to arrive at the theater ½ hour before to get a good seat. I must ask, for fear that we might sell out the theater with Tanner fans and some poor parent might actually miss her kid in his premiere, for you to please consider one of the evening shows. The matinee is very popular with families.
Thanks to everyone for the good mojo!!!!
Love,
Beth
March 9, 2011
We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.
I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.
Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.
On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.
Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.
After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.
I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.
“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”
Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”
Tanner shook her head again.
“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”
“Yes,” she said with some little tears in the corners of her eyes.
“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”
My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”
By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.
I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.
On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.
Love,
Beth
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.
Love,
Beth
January 24, 2011
Tanner’s big day finally arrived. She had her stage debut at Rosie in Alice in Wonderland Jr. on Sunday. She did great and had such a good time. She just loves performing and is definitely in her element. It is such a cute show!
We had a whole row of people there to see her. Thanks to everyone for coming; it meant a lot to her.
If anyone still wants to see it, she’s performing Wednesday and Thursday nights at 7pm. The show runs about an hour and 10 minutes and you can buy tickets by calling the Boiler Room Theatre in the Factory in Franklin at 794-7744 (that’s my shameless plug for Act Too Players!). It really is a cute and campy version of Alice in Wonderland.
Next up… Sleeping Beauty. We decided not to do Annie after all. The schedule was very tough and, after much agonizing, we just decided she couldn’t handle it. Tanner actually seemed a little relieved and agreed that she might rather do Sleeping Beauty with Act Too. They just rehearse once a week, which frees her up to go back to dance lessons. She is doing hip-hop and ballet. Sadly, she had gotten very worried that she would get sick and miss an Annie rehearsal or, worse yet, the show. It was causing her visible anxiety.
Frankly, Tanner is experiencing a lot of anxiety right now, for one reason or another. I’m not sure whether she’s just so sick of all this or what, but we’ve started seeing the play therapist again and are hoping she’ll get some relief (and then John and Jake and I will get some relief!).
Daisy Mae joined our family officially on Saturday… she’s our official adopted dog and she’s doing great. The kids adore her… especially Jake.
Tanner has clinic Friday morning with the dreaded lumbar puncture with chemo. It is the worst time for this to fall… she is just so anxious to begin with. We haven’t even told her because we don’t want her to worry about it and ruin her two shows this week. It will bring a crashing halt to her elation from the shows, I fear. The childlife specialist at the clinic, Sara, is going to accompany us to the OR again to help distract Tanner and keep her from working herself up as much. She will be tired from doing two shows two nights in a row on school nights so I’m not hopeful about it turning out all that well. Sigh. HOWEVER, this is the second to last one. Only one more spinal after this (fondly known in leukemia world as the “final spinal”). Truly a landmark.
An update on little Alli who I wrote about last time — she has FINALLY come off the ventilator and is breathing on her own again, but not really out of the woods yet. She still has a ways to go to recover from this and keeps getting other infections in the process. I can’t imagine how excruciating this has been for her little body to endure and for her family to withstand. But… progress nonetheless for her!
Love,
Beth