January 8, 2011
Dr. Mixan called with great news. Tanner tested positive for rhinovirus and enterovirus, both of which are very common respiratory/cold viruses! Hurray! She was able to go to Alice in Wonderland rehearsal last night and her first Annie rehearsal today… she’s in heaven.
She also never got a headache from the transfusion… amazing. None of the bad things that could have happened, did… that’s refreshing.
Love,
Beth
October 26, 2010
Some exciting news has come our way this week… Tanner has been named the 2011 “Girl of the Year” for the Tennesee Chapter of the Leukemia and Lymphoma Society!!! What an honor! We’re so proud of her.
What does this mean? It means that the 14 or so candidates for Man of the Year and Woman of the Year will be raising funds in honor of Tanner and the Boy of the Year, Jack Woods. The kids will be LLS ambassadors at parties and events for the fund-raising campaign and even appear in ads. Tanner positively lit up when I asked her if she wanted to do it. Her duties will begin sometime in January and end in June.
Thank you all for supporting her during the Light the Night walk. Our unprecedented success as a “friends and family” team definitely played a huge role in Tanner receiving this honor.
Another piece of news is that I am starting my low iodine diet Thursday in preparation for receiving a radioactive iodine treatment in a few weeks… ugghhh. This radiation treatment is a pill that I take at the hospital and then I can’t be around anyone for five days (and the kids for eight days) while my body is ridding itself of the excess radiation. The iodine is absorbed into any remaining thyroid tissue, along with the radiation, and the idea is that it kills any remaining thyroid tissue, hopefully decreasing the chance of cancer recurrence. Thyroid cancer can recur at any time, even 20 or 30 years later, so I will be tested every year for the rest of my life, essentially. I’m actually relieved that they recommended the radiation… I just want to get rid of this stuff.
Once again, John will have to do it all… work, take care of the house and take care of the kids. I feel so helpless that he will have to do all this… again. I know I have said it before, but I will say it again… cancer sucks.
The low iodine diet is interesting. Since most salt we use in the U.S. is iodized, almost all processed foods are prohibited. No soy, dairy, seafood of any kind, etc. It made for an interesting shopping trip. Thank God for my friend, Beth. She spent all day yesterday baking bread, rolls, muffins and crackers for me from the thyroid cancer cookbook so that I wouldn’t have to survive without carbs for the next two weeks. Who has friends like this? I figure with bread and salt-free natural peanut butter, anyone can make it.
We’ve had a good week so far. Tanner’s energy seems to be back full force and she and Jake are amped for Halloween. Next week, she has a lumbar puncture with chemo injection, so that is looming over our heads, but we are trying not to think about it too much.
Tanner’s school is doing “Pennies for Patients” again in her honor. It’s a LLS fund-raising campaign where kids bring in change from home to benefit LLS. Moore Elementary continues to support our family in ways we never imagined.
I’m going to relish my last day of processed food tomorrow. I’ll miss pizza most, but diet coke is allowed, so I’ll make it!
Love,
Beth
October 4, 2010
We’ve been anxiously awaiting the pathology report from my most recent surgery… and I mean anxiously. You see, we’ve gotten used to bad news… even come to expect it. I thought for sure, they were going to tell me my parathyroid glands were cancerous as well and we were going to have another surgery to take out those. Three surgeries in three months… I told John I was seriously going to cry if that happened… for the first time in a long time.
Today, we were pleasantly surprised! My pathology report was clear… no cancer at all in the right side of my thyroid… hallelujah! So, no more surgeries. I will go to the endocrinologist later this month to determine what the next steps are… maybe nothing… maybe radioactive iodine. But, we can handle that.
Score one for good news!
We had a fun weekend with the kids. Jake had a soccer game Saturday morning, then we took them to Toy Story on Ice. They had a ball. Then, Sunday, we took cupcakes to the sweet kids at church who had raised so much money for Team Tanner. I took the check from the church, along with some other checks people have given me, to the Leukemia and Lymphoma Society today. Our total, to date, is $14,491. Ah-mazing!
The Light the Night Walk is this Thursday. Tanner’s clinic day is Wednesday. Sucks, but it just seems to work out that way. She’ll be on steroids for the walk and for Moore Miles, her school fundraiser, the next day. Don’t know how many laps she’ll be able to run with the steroids and IV chemo in her, but I’m willing to bet she will surprise me… she always does.
I gave up trying to make them be serious for the picture!
So much good news… feels so good.
Love,
Beth
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!
Love,
Beth
March 12, 2010
So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:
Dr. Mixan: “Her counts still look good. Her ANC is 2100.”
Me: “Oh, good.”
Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”
Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”
Dr. Mixan: “Yes.”
Me: “Really?”
Dr. Mixan: “Really.”
Me: “Really?”
Dr. Mixan “Really.”
Me: “REALLY?!!!”
Dr. Mixan: “REALLY!!!”
Me: “Tomorrow?”
Dr. Mixan: “Why not?”
This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.
So, she’s going to school this morning… for the first day… about 7 months late.
Wow. I’m speechless.
Love,
Beth
January 19, 2010
“She is functioning completely normally for a six-year-old girl.”
Wow! I had thought Tanner’s physical strength had improved tremendously over the past month, but never dreamed the physical therapist would say she doesn’t need any therapy. She actually said she was looking for ways to challenge Tanner because her coordination, balance and strength were so good.
You really don’t have any idea how relieved I am. Not just because she didn’t need therapy, but because there is a part of me that has wondered in my darkest place, whether Tanner would ever be physically strong, the way she was before, again. There are so many potential long-term side effects to the medications that Tanner is taking. I don’t worry about them in the front of my mind; they are buried somewhere deep in the place I just can’t go. It’s too much to try to worry about what could happen; what does happen is tough enough to stomach. But, I personally know kids who have avascular necrosis (bone death) and mental processing problems due to the chemo, so I’m certainly aware of the potential problems. There’s also long-term metabolism issues, long term nerve damage, etc., etc., etc.
So, to remove one worry from the dark place makes a little more room for light and hope.
Tanner is strong. Her muscle tone is returning to her legs and arms. She no longer looks like she belongs in an ad for a starving child in a faraway country. She can skip and hop on one leg, walk on a balance beam backwards and do a sit up from upside down. Amazing. It’s wonderful not to think of her as being so fragile.
I have a hard time looking at other kids sometimes without feeling somewhat resentful. They are athletic and bouncy. They have a glow about them and color to their skin. It’s been hard to believe that Tanner would ever look like that again. She still has a way to go. She’s still very pale and low on stamina; I suspect she’ll be that way until August 6, 2011, when this journey will come to an end. But, she no longer looks sickly. And, that’s a relief.
Normal for a six-year-old child. Music to my ears.
Love,
Beth
January 11, 2010
Tanner modeling my new coat
It was the most fun and normal-feeling weekend we have had in a long time. Saturday morning Tanner’s homebound teacher, Mrs. O’Hara came and they had a great session. Then, Jessica came and stayed with the kids until the afternoon while John and I went and did some new house shopping, picking light fixtures, carpet and tile. It was fun just tooling around together and I found that I didn’t think about cancer almost at all the whole time. Jessica and the kids made a card for her fiancé, Harley, who is serving in the marines overseas. Harley once sent Tanner a picture of himself with his marine haircut and Tanner with her leukemia do and said all the guys in his unit thought she looked cool. It hangs on our refrigerator and is one of the nicest things we have received (and that’s saying something!).
After John and I came back home, we all went to a friends’ house for tacos and fun. These are great friends who have been so kind to us. They go to our church and Tanner has known their daughter, Gracie, for a long time. They also have a son, Sam Ross, who is Jake’s age, so it made for an extra fun playdate as everyone had someone to play with. Their kids a similar energy levels to ours and we were treated to some crazy concerts and dance exhibitions.
Sunday, Tanner and I went to the mall together. She was feeling really bad when we left, with a lot of pain in her legs, but was determined to go. We took a jogging stroller with us so she could ride if her legs continued to hurt, but some painkiller seemed to fix the problem and she ended up pushing more than riding. We ate lunch in the foodcourt (another first since diagnosis) and did a little shopping then came home in time to go for another visit. Our friends Steve and Michelle were nice enough to let us come over and look at their beautiful kitchen to get some design ideas and the Tanner and Jake love to play with their girls. We finished the day with some Wii and everyone went to bed tired, but happy.
We also got some really great news… Tanner can go back to dance class. WOW! It will mean so much to her to be able to belong to something again. Not to mention how great it is for her legs.
So, we had a great weekend. Pretty normal, if you don’t count all the medication and the leg pain. Still, an idea that long term maintenance does equal more freedom, even if there is still more chemo involved than anyone would like.
Hope you had a good one, too.
Love,
Beth
December 31, 2009
Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.
Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.
Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.
While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.
Love,
Beth
December 22, 2009
John took Tanner in for chest x-rays today and they were clean!!! Her neutraphils had dropped from the crazy 19,000 to a more healthy, but robust, 3,100. So, doc says we’re in good shape to travel. They gave us a contact at a hospital near my parents’ house that is capable of handling a kid with leukemia and told us to give her Claritin to clear up her one ear that is threatening infection.
So, if my eyes will just clear up and Jake’s nose, we are good to go! We’ll get there a day later than planned, but there nonetheless. Hopefully, no other crazy things will happen to keep us from going.
I’m just starting to feel a little Christmas cheer. Just let the kids open some gifts from dear friends (a Phillies and an Eagles hat, oh my!), read some Christmas stories together and am going to get Tanner to help me wrap some presents while Jake finishes napping. It would be completely blissful if it wasn’t for the laundry!!!
My poor husband finally got to go back to work – he definitely bore the brunt of this health mishap. Trying to work from home while taking care of our two monsters is no picnic.
Hoping all of you are indulging in a little Christmas, Hannukah or Kawanza cheer.
Love,
Beth
Tanner and I waiting for Jake's Christmas program to start
December 17, 2009
Hitch up the sled, we’re flying to Christmas!!!! Tanner’s neutraphil count today was 2,750!!!! That’s even higher than it was 2 weeks ago! We were given the all-clear to go to John’s Mom’s tomorrow and to my parents’ next week. We don’t even have to go in for counts next week! Hallelujah!!!!
Tanner and I high-fived and we hugged nurse Carie and then she forbade me to cry happy tears. When we got out of clinic, we skyped John from the hospital lobby; he was at our church with our Children’s Minister and we told them the happy news. You have no idea how I am breathing a sigh of huge relief not mention joy at being able to spend the holidays among family!!!
After hearing the good news, Tanner and I ran for the hospital pharmacy to fill a few prescriptions, grabbed a bite to eat while we waited, and drove at breakneck pace to get to Jake’s Christmas Program at school at 11 am. Thank you Sissie for holding the program for us (we were a few minutes late!). Right when we got there, Jake’s class came in. We were really worried that Jake would pull a repeat of last year’s performance. Last year, he made it through the back door of the church, saw us, burst into tears and refused to participate any further. So, we snuck in the back and hid ourselves from view. No worries… he was a jingle belling maniac! He came into the back door and bolted to the altar where he stood, ringing his bell and waiting for the rest of the class to catch up to him. He stood there, not singing, but ringing his bell with a huge grin on his face. Then, he saw John who had snuck up the side to take video (It’s hard to hide, when you are as tall as John is). He must have yelled, “Daddy!!!” five or six times during the performance and even made some weird noises and funny faces that had the crowd laughing. Tanner and I giggled hysterically. It was such a treat for her to be able to participate in something like that. She was really proud of him and even got to see a few friends.
Jake and Ms. Julie singing Jingle Bells
Amongst our great happiness today, there is one tiny bad thing (why does there always have to be a bad thing?). If her counts stay this high over the next couple of clinic visits, they will have to up her dose of chemo. Not really what we want, if you can imagine. She’s at a 100% dose right now and they can up it to 125% at max, I think. I really don’t relish the idea that she could take more chemo, but they want her counts to stay between 1,000 and 2,000 to assure that they are affecting any leukemia cells that might try to make a comeback.
But, we will cross that bridge when we come to it. Right now, we will joyfully pack, clean the car and get the oil changed, wrap last minute presents and make a cheese grits casserole before we pile in the car tomorrow headed for Jackson, TN. We’ll be back on Saturday night in time to light the advent candles at church on Sunday morning, regroup (do the laundry) and repack to head for Atlanta on Wednesday.
Thank you to everyone who prayed and send well wishes. And, thank you God for recognizing that we couldn’t take any more disappointment.
Love,
Beth