An Army for Hope

Posted on by
4

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.

Love,
Beth

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

Update — Feeling Much Better!

Posted on by
Reply

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

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

A Plea

Posted on by
4

December 14, 2010

I’m writing this with my laptop propped on Domino’s back since he is nestled half on my lap and half on the bed. With great sadness, we have realized we cannot keep Domino. He has nipped Tanner twice in the past month and has begun chasing neighborhood kids when they run into the yard. We had a trainer coming next week to work with him, but just decided that he would be much better off with a family without children. So, he will be going back to the rescue organization that had him before he went to the prison on Saturday, UNLESS someone out there is looking for a beautiful and loving Dalmatian/pointer mix who would make a great pet for a family without kids.

Here are his particulars: He is three years old, neutered, micro-chipped, up to date on shots, heart-worm and flea control. He has passed his AKC Canine Good Citizenship test and knows sit, down, stay, come, give a paw, rollover and Bang! He is completely and very reliably house-trained and crate trained. He never chews anything up unless it is food or smells like food (he is quite a chow hound and has a great nose, so you have to be careful leaving food out). He is smart and silly and loves to be near his people. He has never shown any aggression towards John or I and does not challenge our authority. He would probably do best as the only dog and does not like cats. He is initially growly and seems aggressive when meeting a dog, but mellows out if the other dog does not want to fight. He needs regular exercise, but is definitely not as energetic as a pure Dalmatian and is very calm and docile in the house. He needs to be an inside dog with outside privileges.

So, if you or anyone you know are interested, please respond to the post ASAP. You wouldn’t be sorry. We are heartbroken to have to let him go.

Love,
Beth