May 13, 2011
Here’s a link to the WTVF story about the therapy dog:
She did a great job. We’re so proud of her.
May 13, 2011
Here’s a link to the WTVF story about the therapy dog:
She did a great job. We’re so proud of her.
May 2, 2011
We’re home. Which is a wonderful thing and more than we had hoped for when we left here yesterday morning. The psych team believes that she is suffering from traumatic stress and that the past few weeks have been a little too much for her. In addition, they thought the aftereffects of the steroids could have played a role as well.
They didn’t think her antidepressant was to blame, in fact, they raised her dosage. She was on such a low dose and had gotten such good results initially that they felt they were helping.
It was reassuring to know they didn’t see any signs of mental illness; just too much stress for our little girl to take. The doctor said she believes that Tanner’s age group has the hardest time dealing emotionally with cancer treatment. Older kids are able to express themselves better and relieve some stress by venting and using coping strategies. Younger kids don’t really understand the seriousness of their treatment and are spared some of the fear of dying or of relapse. Tanner’s age group is old enough to understand, but not really old enough to express themselves and use coping strategies. Tanner, in particular, does not really talk about having leukemia or what stresses her. She just doesn’t.
The next couple of days may still be a little bumpy, but I think we’re better prepared to deal with it until the increased dosage of antidepressant might help relieve some of the tension for her.
Thank you so much for all the love and support you sent our way; it truly buoyed us when we were drowning. And huge thanks to Beth, Kim and Ann, who went above and beyond, as always.
April 20, 2011
Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.
Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.
We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?
Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.
We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.
Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.
I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.
April 13, 2011
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.
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!!!!
April 11, 2011
Tanner is feeling good today. Her cough is resolving nicely. Going to pick up homework from the teacher so she can keep up with her class. Reading Little House on the Prairie… she’s almost finished. Playing lots of Monopoly and Life. Living in our pajamas and watching movies. Making lemonade as best we can.
Sadly, she is experiencing some side effects from her increased chemo dosage that make us all feel like we’re going back to the beginning of treatment. So heartbreaking for all of us, but especially for her. She is devastated and frustrated and mad. Cancer is wily and evil and is getting in it’s LAST licks before we are finally done with it… but we WILL be done with it… just four more months.
I found comfort today in these words from Elizabeth Edwards. I wish Tanner were old enough to fully appreciate what Elizabeth went through and how resilient she was all the way to the end. It might bring her comfort, too. Amazing woman, that Elizabeth. Amazing child, my Tanner.
“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
— Elizabeth Edwards
April 6, 2011
Tanner’s counts finally came in late last night. Her neutraphils are 390, which is better than we feared, but still severely neutropenic. Dr. Mixan called this morning and her IgG level was also low (that’s an antibody associated with respiratory immunity). So, we’re headed to clinic this morning for an IVIG transfusion. We’ll also hold all chemo until next Wednesday when we’ll go in for a counts check and see where we are. No school and neutropenic precautions until her counts are back up.
Tanner slept really well last night and feels good this morning, although she is still coughing. The IVIG transfusion might help her kick the virus she is fighting so we’ll hope for the best.
Glad the waiting is over… I hate waiting. Thank you for all the prayers and good wishes.
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:
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.
March 23, 2011
As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).
Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.
After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.
We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.
It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.
Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.
We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.
Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.
Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.
On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.
It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.
I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.
Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.
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.
February 2, 2011
I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.
I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.
Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).
The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.
I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:
Tanner’s Story in Numbers
25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine
This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.
It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.
Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!
We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.
It was a great night to hope.