Alice in Wonderland

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

Good News!

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

Update — Feeling Much Better!

January 6, 2011

Tanner woke up feeling A-Okay this morning! No neck pain or rash, but still coughing some. I kept her home from school just in case she was contagious, but throughout the day she became more and more animated and seemed like her normal feisty self by bedtime. Barring that nasty headache from the IgG transfusion rearing it’s ugly head, I see no reason she won’t be able to go back to school tomorrow and Alice in Wonderland rehearsal. Annie starts on Saturday!

No results yet on the virus panels… that will take another day or so. If she’s positive for either virus, we’ll probably have to go in for a counts check next week and cross our fingers that they haven’t dropped to a dangerous level.

Thanks, as always, for the good wishes and concern. I really does help to know we’re not in this alone.

Love,
Beth

Spent the Day at the Hospital

January 5, 2011

As we suspected, we did end up at the hospital today. We made it through the night with no fever, but Tanner woke up with no improvement in the neck pain, coughing and feeling bad. While we were waiting to be seen, I noticed she had developed a lacy rash on her arms and neck. I actually felt relieved about that because it meant that she probably had a virus as opposed to swollen lymph nodes because of reasons I can’t even bring myself to write.

The doctor agreed that she probably has some kind of virus and has tested her for all viruses, but specifically for Epstein Barr and Parvo Virus. Epstein Barr is the virus that leads to monolucleiosis for some people, but not all. Parvo is commonly called Fifth’s Disease or Slapped Cheeks because it can cause red cheeks and is accompanied by a lacy rash. Neither will be a great situation as both viruses are known to compromise bone marrow and can cause anemia. In the normal person, their bone marrow can compensate and regenerate quickly. Tanner’s will not. If she has either of these viruses, her counts will likely drop across the board and necessitate blood and platelet transfusions and bottom out her neutraphils. It would take a while for her body to recover. The results of the virus panels will not come back for a few days.

Waiting for an antibody transfusion

Dr. Mixan decided to give her an IVIG transfusion. This is an antibody transfusion that might help her recover from this virus. The effect of an IVIG transfusion is not proven on ALL patients, but anecdotally, it has helped Tanner in the past. She is almost always low on the IgG antibody, but we usually don’t transfuse until she’s below 400 (600 is the low side of normal for a kid her age). She was at 481 today, but we thought it might help. Unfortunately, it has a common side effect of nasty headaches for a few days. Tanner had one last time (this is her third IVIG transfusion) so I’m waiting for that shoe to drop.

Tanner cried today thinking she might not get to go to Alice in Wonderland rehearsal on Friday night or her first Annie rehearsal Saturday. I’m hoping she’ll get to be in the plays at all.

She cried a lot today. About going to the hospital this morning, about being “sick,” about possibly missing things. She is just so sick of all of this. I want to hug her and comfort her and tell her I understand, but unfortunately, I think it doesn’t help her be strong… and she needs to be strong. We reminded her today that everyone gets sick, not just people with leukemia, and that this isn’t that big of a deal. But, I think she is smart enough to know that when “normal” kids get sick, they don’t have to go to the hospital and have blood drawn and get transfusions. As always, though, she bucked up and is holding it together, at least for now.

Please, please send good thoughts or pray or whatever you do that this is just a bump in the road and not a break down that will cause her to miss lots of school and these plays she so desperately wants to do.

Love,
Beth

Clinic Day #45

January 4, 2011

Refreshing to write 2011 on the date line. Nice to enter the actual year that chemo will end for Tanner.

Sorry for not updating for so long. We’ve just been living… like normal people, you know?

Here are the highlights:

A White Christmas in Tennessee

– Christmas was wonderful and relaxed. We stayed right here and enjoyed the snow with John’s family. It was beautiful and peaceful and magical… just the way Christmas should be.
– The children’s Christmas Eve service at church was perfectly imperfect, as always. The kids get to pick a costume to wear and come forward as their part is read about in the reading of the Christmas story. Tanner was an Angel… Jake, after much deliberation and protestation, was a shepherd. Beth and Glenn came home with us and we ate Stromboli and exchanged gifts.
– My parents were planning on coming to our house the day after Christmas, but got snowed out. So, that Wednesday, after clinic, the kids and I piled in the car and headed to their house for “Christmas” with Grandmom and Grandad. We left John at home for a much needed bit of alone, downtime.
– We’ve spent lots of time online and at shelters looking for a new family dog. We’ve found one great candidate, but we’re continuing to look to be sure we’re finding just the right one. If you know anyone who can’t keep their medium to large sized, housebroken, kid-friendly dog, send them our way!

Tanner’s clinic visit last week held very good news… her counts had come down to 1,600 (from 3,700) on their own so we did not have to raise her chemo over 100%! Huge sigh of relief. No one wants their kid to be the one that needs more than 100% dosage to keep counts down. We were terrified that going over 100% would crash her counts and keep her from being able to do Alice in Wonderland and Annie over the next couple of weeks. That would have devastated her.

That was the good part of clinic. The not-so-good part was that they raised her steroid level slightly because she had gained some weight. She normally takes 5 pills per day for 5 days; they raised it to 5 ½ pills per day. As evidence of how unbelievably potent the steroids are, she reacted as if they had doubled her level. She was crazy emotional, tired, would eat like crazy all day only to feel too nauseated to eat at dinner, and now has been having extreme neck and jaw pain for the past three days. We thought the pain might be from the Vincristine (IV chemo), which can cause jaw and face pain. But, today her left cheek swelled slightly, but noticeably, so we think she might have some kind of infection, maybe a salivary gland. She’s also been coughing a lot. After talking with Tanner’s doctor today, we agreed to come in to clinic tomorrow if it isn’t any better. If she develops a fever, we will have to go to the emergency room tonight.

Please send good thoughts for Tanner’s health during these next few months. She will be so crushed if she has to miss either of her plays. Allowing her to participate in Annie, which has a fairly intensive rehearsal schedule, was such a leap of faith for us. We wanted to say no, but knew she really needed us to say yes. Hopefully, her body will cooperate.

Also, please keep in your prayers little two-year-old Alli. She was diagnosed with high risk pre-b ALL (Tanner is low risk) at the end of October and has spent more time in the hospital than out. She is currently in the hospital with a cold, very low counts and a intestinal infection.

Love,
Beth

Good News All Around

November 20, 2010

Friday was full of good news. First, I got my scan results… and they were clean!!! I should have posted last night, but I think I was just so relieved, I just wanted it to all go away and not even think about it anymore. They found remnant tissue around my thyroid, as they expected, but the radiation was doing its job in killing that. And, they didn’t see anything else… nothing!!! That’s what I like to hear. Now, to get back to life without all these interruptions.

Second, we found out Tanner got a role in Annie. She will be an orphan named Kate. Talk about one ecstatic child! She threw her arms up in the air and screamed as only a seven year old girl can. Rehearsals don’t start until January, but she’s been singing “Hard Knock Life” for days. Even Jake can belt out a resounding rendition of “Tomorrow” at this point.

Jake scrapping for the ball

Today, Jake had his end of season soccer party at CiCi’s pizza. He had a great team with really nice kids and parents so we had such a good time. The coach gave out trophies… you’ve never seen anyone more proud than Jake. He carried that trophy around half the afternoon with this big grin on his face. The pictures are on John’s phone, but I’ll post some next time. He really was adorable.

On a breakaway

I think it’s just sinking in for me that this latest health debacle is actually over. I think one of the side effects of becoming strong enough to handle what we’ve been through is that you also become a little numb to news – be it good, or bad. It’s like you just brace yourself for the worst and it’s difficult to believe it’s actually good news instead of bad. Even though my cancer has not been hard to deal with physically, it’s been hard on our family mentally. Just the disruption to our lives over and over and, for John and I, feeling like we were kicked when we already down. I just want to be able to move forward with some things, instead of always feeling like we’re treading water trying to keep from drowning. Swimming to shore and standing on dry ground would be a nice change.

Congratulations from a friend

Celebrations all around. Hurray for good news.

Love,
Beth

On Its Way Out

I think the radiation is definitely on its way out. I feel much better today after several days of mild malaise and fatigue. Even stopped by the house today to pick up Domino and take him for a walk. The walk was tiring, but it felt good to get moving and be outside. I think my friend Kim is going to come home to find a permanent indention in her new sofa in the shape of my heiney. I’ve read two books and watched countless movies and even gotten a few (a very few) things done.

Mostly, I miss my family. John and the kids seem to be doing great, but I know it is unsettling for the kids to keep having me drop out of sight while I recover from the surgeries or now while I am hiding my glow from them. Tanner still doesn’t know I have cancer, but I think she is smart enough to figure out that it’s somewhat serious and it makes her anxious. But, mostly I think they just miss their mommy… and I miss them. Still, I think John has really enjoyed his time with them.

I’ll come home Tuesday. Even though I can’t touch the kids more than 30 minutes cumulatively each day, I can at least be around them by then and I can help. And, I can get hugs, even if they’re quick. That will feel good.

I go back to Vanderbilt Thursday for a body scan to see how effective the treatment has been and determine if the cancer had spread anywhere outside the thyroid. If it had, the cancerous tissue would have absorbed the radioactive iodine and it would show up on the scan. I think I have to lie still for 1 ½ hours (can you say, “Nap?”).

I ended my low iodine diet today at dinner time. John and the kids did a “drive by” and brought me Jets pizza, some candy and a cake in the shape of a turkey that says, “Glow, Mama, Glow.” I laughed out loud. Jake was so cute bringing me the candy. He put it on the ground and backed away from me and said, “You’re done with your diet!!!!” Sweet thing. It killed me not to be able to give him a big hug.

Tanner has her Annie callback tomorrow night. She seems to have gotten over her cold and cough pretty much, so I think her voice is back in singing form. I wish I could go so badly, but I’ll just have to get a report from Daddy.

Thanks for all the well wishes. People have been so nice… as always.

Love,
Beth

All Aglow

November 12, 2010

I’m aglow… with radiation! I’m sitting on a plastic tablecloth on my BFF Kim’s couch watching the Today show. It’s like a vacation as long as I forget why I’m here. I don’t feel really bad, but I don’t feel good either. I feel like I’ve been poisoned… go figure.

I’m still on the low iodine diet through Sunday to ensure the radioactive iodine absorbs into any remaining thyroid tissue as well as possible. So, Beth is coming over to make us hamburgers with homemade French fries and homemade ketchup. Yum! How does a girl thank friends like these? The thing is, I knew that they would take care of me… it’s just what we do for each other.

John and the kids dropped by last night and rang the doorbell and drove off before I could answer (This is affectionately referred to as the “Ding Dong Ditch” in the South). They left funny gifts the kids had picked out… a reindeer antler headband and a “Do Not Disturb” eye mask! Too funny!

Yesterday was surreal, but a little anticlimactic. No hazmat suit for the lady who gave me my RAI pills (I feel ripped off), just gloves. But, the pills themselves came in a space age looking metal canister. When she opened it, the metal was 2 inches thick and there was a very small indentation inside with a small plastic vial in it. The pills were in that vial and I had to take them without touching them (apparently it’s okay to touch them with the inside of your body, but not the outside!). Then, after I took them, a guy came and measured me from one foot and three feet away with a radiation detector to determine how radioactive I was. Apparently, everyone is different depending upon body mass (this is the one time it would have paid to have been more overweight than I am). Then, they write your contact precautions based on those measurements.

So, no closer than three feet from someone for me and six feet for kids or pregnant women for at least three days, but our doctor suggested we go seven days for that precaution. Even after that, I’m not allowed to have direct contact with the kids for more than 30 minutes a day for the next 16 days. Bummer. I’m going to miss cuddling with my babies so bad. But, I can get out more than I thought. No reason I can’t run to the video store or grocery during off hours when there aren’t a lot of people.

I feel like I’ve hijacked this blog… it is called Tanner Time, after all. So, here’s how Tanner’s doing. She’s having a somewhat hard time handling this extra chemo load. I think we had gotten spoiled being on 50% chemo for so long and now she’s on 100%. She missed school Monday and Wednesday. She just didn’t feel good. And, she’s fighting some kind of cold. Jake had a mild case of croup this week and missed school, so it’s been a little nuts this week.

Tanner auditioned for an orphan role in Annie last weekend and did so well. She has a callback this Monday and is so excited. It was a leap of faith for John and I to even let her try out because the rehearsal schedule will probably be a little tiring, but we just felt like it was something she wanted so badly that it was worth it. I was so proud of her for doing so well at the audition; she had just had that big dose of chemo and was on steroids, but she still got up there and gave it her best. Hope her cold clears up by then.

I think if nothing else, I am gaining a new respect for Tanner’s resilience. She has pointed out to me several times over the last few weeks that I am just like her – I can’t eat what I want, I have to stay away from people and I have a yucky taste in my mouth that changes the way food tastes. And, now I feel bad like she must have so often over the last year-and-a-half. I’m having a mini-dose of her life. Wow. I respect her even more. She doesn’t complain often and now I realize she really could. I have to say if I woke up one morning and felt like this, I would call in sick to work, but I think she goes to school like this some days. Strong kid, that girl of mine.

Thanks for all the well wishes; I’m doing just fine.

Love,
Beth