Big Black Dog

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

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

You Get What You Need

June 27, 2010

We thought we wanted a golden retriever… a goofy, playful, ball chasing, loveable family dog. But, as Cesar Millan, the Dog Whisperer, once said on his show, “You don’t get the dog you want, you get the dog you need.” (I wish I could do the accent; it sounds better with the accent.)

Domino has turned out to be exactly what we needed. He isn’t actually all that playful; I think being kept outside by himself for the first couple of years of his life didn’t teach him much about playing. He doesn’t even seem to notice when a ball bounces by his head. But, he is silly, which is actually more amusing. He is unbelievably adorable and super soft. He doesn’t really play with the kids, but his is unflappable when they play. He is the first dog I have ever seen sniff a tambourine when a child was shaking it… seriously. He is unfailingly gentle, completely bombproof and always ready for loving in any form. The kids can lay on him, poke his feet, pull his ears… it’s all good with him… he takes it as love, which is how it’s actually meant.

John ruining the dog

So, he may not be what we thought we wanted, but he is exactly what we needed. And, we have had a ball with him this weekend. The kids are taking turns having him on their beds at night while reading books… he loves it. Jake put his blanket over himself and Domino today and they lay on the floor and watched TV together.

If you or anyone you know is looking for a dog, I can’t recommend the Death Row Dogs program enough. You can find it at McMuttigans.com. The whole experience was wonderful, from meeting the inmates to getting our super dog. He is very well trained; he knows all his obedience commands and basic good manners, is house-trained and crate trained. He doesn’t jump on you, or rush at the door or chew stuff up; it’s been a wonderful way to get a dog. They get 25 dogs every three months and Domino was the 484th dog they have rescued from euthanization. People come from all over the country to get their dogs and we feel lucky to have found them. They had four dogs from Domino’s class that had not yet found a home, including a beautiful chocolate lab. Surely, someone we know needs a trained dog….

Too hot to do anything this week, but swim and maybe, go to the movies. We go back to the clinic on Thursday for a counts check and, hopefully, they’ll be up so we can get a little more freedom after that.

On a sad note, Ellie, the little girl I asked you to pray for last week, passed away the very next day after my post. I don’t know what else to say about that, except to say cancer sucks.

Love,
Beth

Yay for Domino Day

June 23, 2010

Domino in the car on the way home

Finally, he’s here. Domino. Staring at me as I write on the computer. Trying to get me to scratch his ears. He is, believe it or not, cuter in person. And, so gentle and laid back. The Dog Whisperer would not have approved of his introduction to our household. Four kids screaming and playing with loud toys, six adults, everyone swarming him at once, Jake hugging him and laying on his back. But, he took it all in stride. He’s just great.

I’ll write more tomorrow about our experience at the prison. It was really inspiring. But, right now, it has been a very long day and there is a spotty dog who will expect a long walk at 6 am, so I’m going to have to stop being such a night owl from now on.

Sorry we didn’t take better pictures. We didn’t get home until 4:30 with Domino and the kids were so excited. We had a small dog fight with the lab next door and then we, ever so briefly, lost our new dog. Jake left the door open and he slipped out. John and I cornered him one street over, but it was a close call. Whew! So, it was a little crazy and we hustled the kids off to bed while we gave Domino a little break in his crate and then realized we forgot to take pictures. Tanner had trouble sleeping and came down later and we snapped a shot of the two of them, so that’s really all we have. We’ll take better pics tomorrow and I’ll write about meeting the inmates that trained him. They did a good job.

Love,
The Happy Pages + a Spotty Dog

1 Day to Domino

June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.

Love,
Beth

Meet Domino

April 26, 2010

Today, we ordered a dog. He’ll be ready for delivery in June.

This dog actually poses when you point a camera at him

John, the kids and I loaded into the car today for a two hour drive to Kentucky to meet Domino. We got through the security gate and parked in the lot they directed us to. Through the chain link fence, we could see inmates walking and exercising in the prison yard. Occasionally, you would see an inmate walking a dog. Then, we spotted a woman walking a very prancy Dalmatian toward the lobby. When we went inside, we found a very sweet, very gentle, very spotty dog that we all loved. We spent about 20 minutes with the kids walking him around the room and petting him. He was very well-behaved and very calm around the kids. By the end of our visit, he was leaning against John with his eyes half-closed while John petted him. What a great dog! Can’t wait until June. John and I will go back, without the kids, for a graduation ceremony and meet the inmates who trained him. They’ll get the chance to tell us everything they know about Domino and we’ll get to chance to tell them what this dog will mean to our family.

Take that cancer.

Love,
Beth

Happy on the Outside

April 20, 2010

Tanner at the party

Somehow six days have slipped by again without a post. Let me catch you up: Tanner did get to go to her birthday party at Jump Zone – she had a blast and I wasn’t the only Mom handing out the hand sanitizer. The Dalmatian passed the child-worthy test with flying colors and now we’re trying to work out going to the prison to visit him. If all goes well, we’ll put dibs on him and wait until he finishes training in June! Tanner is feeling well, although she seems a little tired and has had some headaches. John and I got to go on a date on Sunday night for the first time in months. We went to see a movie at the Nashville Film Festival produced by our next-door neighbor. Went to church on Sunday (Jake entertained the church during the children’s sermon by showing another child the inside of his nose…) and then had lunch at the home of some good friends. It was a great day.

Tanner dancing after the party... love the shoes

We got a package from Give Kids the World Village today. That’s the resort for wish kids at Disney where we will be staying. It was so exciting to see all that we will be doing. We get three Disney passes, two Universal theme park passes and one Sea World pass. Not to mention how awesome the Village is itself – putt-putt, horseback riding, a train ride, present fairies, ice cream all day, La Ti Da spa, etc., etc., etc. All the characters from Disney, Universal and Nickelodeon come to the Village to visit with the kids. If Jake sees spider man in real life, he may pass out. If only iCarly would show up… Tanner would need nothing else. I’m hoping this trip will suspend reality for us for a while. We could all use a break from that.

So life is good… why is my child so mad? Tanner is struggling with something that is resulting in massive temper tantrums. Her therapist thinks it is anxiety from the newness of school. That sometimes even really good things can be overwhelming. I think Tanner also tends to push until she is more than exhausted, which doesn’t help. Suffice it to say, I’ve received the brunt of Tanner’s anger and it’s exhausting for all of us. Poor Jake doesn’t understand what he has done wrong to make his sister suddenly turn on him. It’s frustrating to finally be at this good place and see her struggle so mightily with something. It’s like the emotion is too much for her, even though the emotion is happiness. Please pray that I keep my patience and that Tanner finds some peace and is able to fully enjoy this time.

It’s tough to know how to slow Tanner down… how to know when she’s had enough, even if she doesn’t think so. She called today from school with a tummy ache. When I got there with medicine, she was lying down on a bean bag chair while the rest of the class sat at their desks. She looked pretty miserable and I just decided maybe she should come home. She didn’t want to, but I felt the rest might be the best idea. She didn’t stay down long when we got home. After picking up Jake, she wanted to go for a walk. I took the wagon so she didn’t get tired, but on the way home, it looked like we had done too much. Then, the meltdown came over something small and stupid (isn’t that how they always happen?). And, she ended up losing some pretty fun stuff because she couldn’t get hold of herself. It’s just a no-win for everyone and I wish I had a rule book to follow. You know, the rule book for kids who have cancer and who have just returned to school and seem happy, but keep having meltdowns. Anybody seen that one at the book store? Online? Guess I’ll have an extra call with Allison. Sigh.

Thursday is her monthly clinic day. Vincristine through her port and the start of another five-day pulse of steroids (that ought to help the meltdowns, eh?). I’m hoping that if the docs want to raise her chemo they’ll let us wait until after Disney. It would be a huge disappointment to have to postpone the trip due to low counts. I’ve tried not to be specific with the kids about when we’re going just in case.

Hoping for a tantrum-free tomorrow…

Love,
Beth

What is normal, anyway?

April 14, 2010

This may have been the longest I’ve gone without posting since Tanner has been diagnosed… 6 days. It’s weird, but things are so normal I feel like don’t really have much to say. Tanner feels really good and looks really good and, mostly, seems like every other kid.

Then, there are moments when I see our life from an objective viewpoint and it hits me that none of this is really normal… it’s just what we’re used to.

For example, last Thursday night, John was preparing Tanner’s nighttime meds and said, “Good grief, am I right with all this she is taking?” He was staring at our medication spreadsheet, taped to the inside of entire double-wide kitchen cabinet dedicated to medicine, mostly Tanner’s. I usually update the spreadsheet about every 2 weeks, after clinic, to be sure we’re current on everything she takes (really, it’s that confusing), but I’ve been kind of slacking lately with the move and all, and he wasn’t sure what he was seeing was correct. I assured him it was. Thursday night sucks. She takes ½ 6MP pill (daily oral chemo), 5 methotrexate pills (weekly oral chemo), 2 neurontin capsules (for neurapathy due to the Vincristine), mepron (a daily antibiotic that prevents a dangerous type of pneumonia), omnicef (antibiotic for the urinary tract infection), claritin (for allergies), pepsid (for the stomach problems that all these meds cause), and zofran (anti-nausea med to prevent the nausea that the methotrexate usually causes overnight). As you can see, nothing normal about a 6-year-old taking all this, and that’s just her nighttime meds.

Today, I spent hours on the unfortunate task of trying to untangle the last month’s medical bills. All of our deductibles have rolled over, so I’m forced to pay close attention to the bills again to be sure we are paying the correct amount. It’s a nightmare matching up the EOB’s from the insurance company and the bills from doctors and the hospital. In the stack, I came across an old bill that had not yet been filed. It was from one clinic day back in the early November – the dreaded first day of the second half of delayed intensification. We stayed at the hospital from 8 am to 6 pm that day, getting every kind of chemo but the kitchen sink. The bill was a testament to the fortitude of my child, to her desire to thrive and survive. Three pages of chemo, listed on line after line. It reminded me how much Tanner’s body has already endured and worried me about how it will effect her long-term.

Tanner came home yesterday SO excited about a birthday party invitation from a little girl in her class. It is at Jump Zone; and we have not allowed Tanner to go there since diagnosis. She was so hopeful, but also was aware that she might not be able to go. I could see on her face how important it was to her… how desperately she wanted, needed to feel normal… to just go to a birthday party like the other kids. I told her I would have to talk to John that night, as he is out of town. That night, we decided that she could go as long as I stayed and applied some hand sanitizer every once in a while. Tanner was thrilled and accepted our stipulation. She was so funny, though. She said, “Dad’s not coming though, right? Just you? Cause Dad will be so crazy with the hand sanitizer.” I laughed and laughed. She’s exactly right. It will be much less embarrassing if germ-a-phobe Dad stays home (love you honey!). So, we’re so happy she’ll be able to go, but there’s nothing totally normal about your Mom lurking in the shadows with hand sanitizer.

So, it’s not really normal, but it’s cancer normal. And, for cancer world, she’s probably about as normal as possible right now. We’re planning for summer camps and our trip to Disney and the Spring Fling at school. We’re grateful and it’s a relief to not feel like we’re in crisis mode, even if it always seems one fever away. I see things ahead that don’t involve hospitals and isolation, but are just normal things that kids and families do. It’s not normal by most people’s standards, but we’ll take it.

We received some awesome news this week… we can get another dog!!! Yay!!! I don’t know who is more excited, me or the kids. We’ve picked out a dalmatian mix from McMuttigan’s rescue in Kentucky. The trainers are child-testing the dog this week and will let us know if they believe he will be a good candidate for us. He is in a three-month training program in a Kentucky prison and will be trained especially for us, by prisoners, by the time we get him in June. We will also know he has been thoroughly vetted over the past three months, so he should be safe for Tanner. So, cross your fingers that he is bomb-proof; we already feel attached to him. If you’re in the market for a dog, consider this program… it’s such a win-win for everyone. The last time we almost got a dog from this program, the prisoners were pouring extra love into the dog we had picked out so their “little angel” would get the best dog possible. Blessings come from the most unusual sources sometimes.

Sorry for the long post… guess I had something to say after all!

Good night,
Beth

On the Mend

February 4, 2010

Tanner finally is feeling better today. After having spent the last two days pretty much in bed, she got up today and played. The antibiotic that she is on for the ear infection has been pretty rough on her stomach and she still isn’t sleeping well (steroids cause sleeplessness), so we’re all a little tired, but she isn’t coughing as much and had more energy today to play.

We bought valentines today for her class and decorated a valentine box in anticipation of being in school that week (I hope, I hope, I hope). We’ve laid low this week and hope that on Monday we find her counts are up enough to go back to school next week.

Speaking of school, those wonderful kids at Moore Elementary raised more than twice their goal in the Pennies for Patients campaign. They raised $2,042 to help fight leukemia and lymphoma. Amazing! On Monday night, the school board is presenting an award to the school and to another in the district that also did a campaign for a child with cancer there. The principal has asked Tanner to come to the meeting with her to help receive the award. I hope her counts allow it.

She was on the news last week; a story about the campaign. They want to do a follow-up when Tanner returns to school and a local newspaper wants to do the same. Very cool. Tanner will just hate that attention (wink, wink).

We’re in a bit of a rut. I think we’re all waiting for something to happen. I find us watching too much television and playing too much wii these days. I really hope she can go to school next week – she really needs a change of scenery, interaction with other kids and a challenge for that quick brain of hers. And, Jake and I could do some things that he has missed over the past 9 months – the library, his gym class, playgroup, etc. He needs to have more friends his age – boys, preferably. So, I’m looking forward to being able to focus on him a little. He’s turning 3 this month and we’ve planned a fun birthday party at our new house and bought him a much bigger present than we usually buy for the kids. He deserves to be in the spotlight for a day.

We’re hoping to be able to go visit our potential new dog this weekend… in prison! He is part of a prison dog-training program that pairs dogs destined for euthanization and prisoners in a intense three-month training program that teaches prisoners job skills and responsibility and gives the dogs a second chance at life. We hope to end up with a nice, trained dog to complete our family. A dog to take Millie’s place at the end of Tanner’s bed and calm the fears that a six-year-old shouldn’t have. A dog to motivate me to get up and walk in the morning to have some me-time and get some much needed exercise. A dog for Jake to lay on and throw a ball for. A dog to keep John company when he falls asleep on the couch. We can’t wait.

Waiting for lots of good things to happen. Impatient for them to get here.

Love,
Beth