Category Archives: friends

Clinic Day #46

Posted on by
1

January 28, 2010

Clinic went pretty well today. She panicked at the LP as usual, but did resign herself to it in the end. She tucked her head under my chin, closed her eyes and said, “Night Night, Mommy” in a tiny little voice. Thank God there’s only one more.

Her counts were ideal at 1180. That means no increases in chemo, thankfully.

She has not felt well this afternoon. Her stomach is really upset. She finally fell asleep at 9 pm with a bucket next to her bed just in case. Still managed to go outside and play with the neighbor kids, though. I wanted to crawl into bed by 2 pm… I don’t understand how she does it.

Speaking of tired… I am.

Goodnight,
Beth

Alice in Wonderland

Posted on by
1

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

Big Black Dog

Posted on by
3

January 17, 2011

Meet Daisy Mae Page
Age: 10 months
Breed: Big Black Dog
Temperament: All sweetness and kisses

We met her at Petco in Bellevue. She was one of the many dogs rescued by Proverbs 12:10. Daisy Mae (formerly Thelma) has been coming there every Saturday since she was a pup. I can’t imagine why. She loves everyone and gets along with everything. But, lucky for us she was still there last Saturday so we could spot her, fall in love and bring her home. Technically, we are “fostering to adopt.” We have until next Saturday to decide whether we are keeping her for good. But, I think it is safe to say the Pages are smitten and hopelessly committed, barring some kind of unforeseen Cujo moment, of course.

The interesting thing is that she has never been an inside dog. She has lived her whole life outside. But, she has been a perfect lady inside and is quickly figuring out what she’s been missing. Now, if she could just figure out what stairs are and how to navigate them!

Tanner has been doing well. She has struggled with some minor health issues like a urinary tract infection, a still unexplained rash on her arm and a persistent cough. But, it hasn’t stopped her from rehearsing for her Alice in Wonderland shows next week and loving it. She is the cutest rose! I can’t wait to see the show.

On a sober note, please pray for the little two-year-old girl, Alli, who I have mentioned in previous posts. She has pre-b ALL, just like Tanner, but is high risk. Their road has been unbelievably difficult and Alli has been on a ventilator since last week, fighting fungal pneumonia. Fungal pneumonia is very serious; so serious that all kids with ALL take daily antibiotics to prevent it. She had to be moved up to an oscillator today, which is apparently a step up from a ventilator, because she is having so much trouble breathing. I can’t imagine the pain of watching your child slowly get worse, instead of better. After all we have been through with Tanner, I don’t think we’ve ever had a situation that didn’t improve steadily. It must be absolute hell. This sweet little girl and her family need prayers.

Love,
Beth

Good News!

Posted on by
4

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

Spent the Day at the Hospital

Posted on by
2

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

Posted on by
1

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

Christmas Spirit

Posted on by
3

December 22, 2010

Christmas last year

Every year, the Christmas spirit hits me at some point. I may have been preparing for weeks, going through the motions because I know I have to or I will get behind, but not really enjoying it like I want to. Last year, it hit me when a sweet friend sent Santa to our house because she knew we wouldn’t be able to get out to see him that year. He arrived in a black pickup truck and came in amidst shouts of joy from my kids. He snuggled my bald little girl and tried to coax Jake to sit on his lap to no avail. And when I hugged him goodbye, I whispered in his ear, “Thank you so much… I didn’t think we would get to do this this year.” And, he whispered back, “I know… that’s why I came.” POW! The Christmas spirit hit me like a ton of bricks!

This year, it has come in more gently. I’ve been trying to enjoy the kids being home and their anticipation of Christmas, but mostly it has seemed like too long of a week without school before Christmas this year. But, this morning, sometime between 10 am and 1 pm, Christmas arrived for me. We invited two families over to decorate Gingerbread houses. These are not just any friends… they are dear friends. These are the girls that showed up, silently, at the hospital to hold my hands as we waited to find out if Tanner would make it through the night when she had to be life-flighted to Vanderbilt for a drug reaction. They are the girls that bring food without being asked, bring crafts when they know we have been housebound too long and take Jake with them when I need to focus my attention on Tanner. They are those easy kind of friends that are more like having family around your house.

So, we gathered this morning, kids happily smearing glue-like icing on gingerbread houses and eating easily as much candy as they smothered on. The girls did a nutcracker show, the boys played batman and air hockey and the Moms got some much needed girl time in a long week with no school.

A sugar coma in the making

When they all left and I sent the kids to their rooms for some quiet time, I realized that I was finally in the Christmas spirit. I put some music on the ipod and made fudge and counted my blessings… my many, many blessings.

When John got home, we went to see some Christmas lights and then, after everyone went to bed, I made Christmas morning breakfast casseroles to freeze in anticipation of Christmas day.

Christmas is just a magical time when, despite all the hubbub, there are genuine moments of such kindness to be found. Like the other night when my friend, Ron, called to say they had a special package for Tanner on Christmas day. I met Celia in the Kroger parking lot (okay, it was the liquor store parking lot, but that didn’t sound so good!) and we talked for 45 minutes in the freezing cold, catching up. Celia and Ron had pulled some favors and got a signed copy of Taylor Swift’s new CD for Tanner. It says, “I (heart) Tanner.” Swoon. In addition, the daughter of the person who got the CD for Celia made Tanner a necklace out of a Taylor Swift guitar pick.

In the bustle of season our friends had remembered us. That is the Christmas spirit.

I know I haven’t written in a while, so here are some of the highlights of the past two weeks:

– Jake had his Christmas program at school where he wore one blue transformer glove the entire time he was on stage singing Rudolph the Red Nosed Reindeer.
– Tanner had pajama day, went can caroling for the Second Harvest Food Bank and enjoyed her last day of school before Christmas break.
– We had our picture taken with Santa. Started out as a kids only picture, but since Jake wouldn’t get anywhere near Santa without me, we all jumped in. As you can see, he is clinging to my leg for dear life.
– Beth, Tanner and I went to see the Nutcracker. It was beautiful and reminded me so much of when my Mom used to take me to see it in downtown Philadelphia as a little girl.
– Beth knew me well enough to offer to go with me to return Domino to the rescue organization he came from. She was a great distraction. We drove to Jackson, TN, and handed him over to, hopefully, find a loving home without little kids. I still miss him terribly, but we’re ready to start looking for our new, family friendly dog after Christmas.

If it hasn’t already, I hope the Christmas spirit creeps up on you or hits you right between the eyes!

Love,
Beth

Clinic Day #44

Posted on by
5

December 1, 2010

Tanner went in for her monthly clinic visit today to get Vincristine in her port. Her counts were high (too high, really) at 3,500. Dr. Mixan doesn’t know why, but per protocol, we will wait a few months to see if she comes back down before raising her chemo above 100%.

Tanner has been to clinic 5 times in the last month. During maintenance, we typically go once a month, but for counts checks, flu shot study and a fever, we happened to be there a lot last month. This morning, she just started to cry when I told her it was time to get dressed for clinic. I hugged her and told her I wished we didn’t have to go and helped her get dressed. We dropped Jake at Aunt Beth’s house and went to the hospital.

The clinic visit went very smoothly, but Tanner kept telling me the whole time that her stomach hurt and she didn’t think she could go back to school. Then, when I thought for a brief time she might make it back for recess, she rallied and was excited to go back. But, when we got in the car, I looked at the clock and there was no way to make it to recess. Tanner started yelling at me in this desperate voice, “Just drive really fast. Don’t stop for lunch. Just get me there… just GET ME THERE!”

I didn’t say a thing. What could I say? I knew it wasn’t just about recess. It was about missing things in general. Going to the hospital to get poked and get chemo while your brother spends a fun filled day at Aunt Beth’s house and your classmates get to go out for recess. Not for the first time, nor the only time. For the 60th or 70th time.

The car got very quiet and I could hear her sniffling in the back seat. I wanted to say something comforting, but I don’t know any more comforting words. I’m fresh out. “Don’t worry, we’ll just be doing this 20 more times or so for 9 more months and
THEN we’ll be done.” Yes, that would be cheerful.

Then, she told me she was sorry she yelled at me and asked me how much longer she would have to do this. “Nine months,” I said, quietly. She just began to cry and said, “I wish I was someone else.”

Again, no words of comfort. She had given up and so had I. It’s just too long sometimes. Too much behind us and too much ahead. She’s doing so well and I know I should be grateful, but I don’t feel that way lately. I just feel tired and ready to not worry about all of this.

I ended up letting her stay home the rest of the day. I just couldn’t muster up enough momminess to encourage her to go back. I’m sad for her, but in this numb kind of way where I seem paralyzed to do much to help.

I realize this post is a big downer, but if I’m being truthful, these days are just as much a part of the journey as the celebratory ones or the tragically sad ones. In between are these numb ones where caring about all of this seems like a lot to ask. Leukemia is an exhausting disease that could wear anyone down. I know we will make it to the end; even on a day like today I have no doubt of that. I know we are strong enough to endure. But, I also know that there will be battle scars that never heal as a result. For all of us. And some days, I mourn those scars and question why this had to happen at all.

Love,
Beth

All Aglow

Posted on by
2

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

Clinic Day #43

Posted on by
4

November 3, 2010

I don’t know why it surprised me. It shouldn’t have. It’s not like we have not known all along how kind the people at Vandy Children’s are. I think it was just stunning to look at all the kids who were in the hospital today and realize that the comfort and peace of mind of just one of those children was so important to them.

Today, when we went down to the surgery waiting area for Tanner’s LP, both the Childlife Specialist, Sara, and the music therapist, Jenny, came with us. Then they accompanied us to the pre-op room and, finally, to the operating room itself. They played music, dealt a hand of UNO, and generally, were engaging enough to distract Tanner from the impending, dreaded sleepy milk.

It was a vast improvement over the past few times. There were no anti-anxiety drugs, no tricks, no deceit. She did cry and get scared at the very end, but the lead up was so much better. She was just having too much fun to get so worked up.

In the end, I carried her to the operating room and held her while they pushed the sleepy milk into her port. She buried her head in my neck and cried, then finally went to sleep. I laid her down on the gurney and we left to spend another ½ hour in a waiting room we now know like the backs of our hands. It was the best it could be, but let’s face it… it still sucks.

So, four kinds of chemo delivered three different ways… plus steroids… in one day. Anytime I start to feel a little nervous about the radiation next week, I remember all she endures.

Her counts were good… too good at 2,600, so they upped her chemo again. I suspect she will feel pretty bad tomorrow, but you would have never known it this afternoon. She danced and sang and she and Jake put on a superhero show for Aunt Beth. And, unbelievably, had trouble going to sleep tonight because of the “nap” she had at the hospital.

Heard about yet another little girl from Franklin diagnosed with leukemia this week. Please pray for her family as they struggle to comprehend the incomprehensible and for this little girl that the chemo begins to heal her quickly and her body responds as the doctors hope it will.

Love,
Beth