Clinic Day #18

October 14, 2009

We had a smooth day at clinic today. Tanner was totally nonchalant about having her port accessed and we actually had a pretty good time joking and visiting with all the nurses, doctors and the childlife specialist.

She got a dose of Vincristine and her last dose of Doxirubicin (red chemo, as Tanner calls it), thank God. She handled it really well, though, and was definitely not as sick this afternoon as she has been before. It seems like she acclimates to the chemo over time and it has less and less effect each time. She was very tired, however, at bedtime and her right leg is hurting her, so she was limping.

The biggest blow today was the doctor telling us we could not get a new dog any time soon. He wants us to get several months into long-term maintenance before introducing a new animal into the house. We were under the impression that puppies were the real issue and so we had begun to look at year-old dogs from rescue. Looking for a dog was a great distraction for all of us… it gave us something to think about besides cancer and something fun to look forward to. Tanner was pretty bummed and the doctor said, “You can hate me for it, Tanner; it’s not your Mom’s fault.” She just looked up and him and smiled and said, “I won’t hate you, Dr. Mixan, I’ll just hate the leukemia.”

I think I’m the most bummed of all. I was really looking forward to getting a new dog and I’m just mad that this stupid disease takes and takes and takes from us.

On a more positive note, the Great Pumpkin visited our house today while we were at clinic and decorated the front of our house for Halloween complete with a ghost, spider webs and giant spiders. Thanks, Aunt Kim… we know who you are! Tanner and Jake loved it.

I’m wiped out. I don’t know why clinic days, no matter how smooth, make me so tired. Something about seeing all those little pale faces and bald heads exhausts me. It’s just not fair and it never gets any easier for me to realize how many kids there are with cancer. Some look so sick it just breaks your heart.

Good grief, time to go to bed. This post is getting depressing.

Love,
Beth

You Can’t Stop Progress

October 13, 2009

Tanner and I dropped Jake off at school this morning and, after stopping at Sonic for our usual drink orders, headed to Sweet and Sassy for a haircut. She has been feeling really good the past two days and I wanted to do something special on our day together. Tanner has not had her hair cut since long before she was diagnosed, and it certainly didn’t seem prudent to cut it while it was falling out, but since she has held on to it so well, I thought it could benefit from a little trim to make it look prettier.

Amazingly, the hairdresser told me that Tanner is growing NEW hair. Sure enough, I look and little sprouts of hair are standing up all over her head. How can this be? With as much chemo as she is processing at the moment, how can something be thriving?

Then, I thought about how in some ways, I feel as if we have been standing still for the past 4 ½ months. Waiting… lots of waiting… for doctors, for medication, for the worst of this to be over so we can try to pick up our life and resume some normalcy. But, unbeknownst to me, Tanner has not been waiting… she has been growing. She is too little to understand what this process should be doing to her body, to her life even… so she does the only thing that kids know how to do… she grows.

Her homebound teacher, Mrs. O’Hara, told me yesterday how pleased she is with Tanner’s progress lately. The two of them have found a rhythm that, if anything, is allowing Tanner to progress in her schoolwork at a faster pace than traditional schooling would allow. Her reading is improving by leaps and bounds and she is a spelling demon. At a time when I worried that she would fall behind her classmates, she continues to shine and grow.

I have also noticed a new maturity in the past few weeks. She seems calmer, somehow. Some of the frantic energy that gets her into trouble seems more in check than normal. She seems to be thinking more before acting or speaking. I haven’t had to discipline her in quite some time and it is nice for it to be so peaceful.

So, while I’ve been busy trying to just hang on until Long Term Maintenance, Tanner has quietly moved on with things. I could take a lesson.

I went to a Board Meeting for Jake’s school tonight and it was so nice to talk about something other than cancer. I probably need to make a better effort to keep growing during this time, too.

Over the weekend, Tanner received cards from a 4th grade class at her school and from her own 1st grade class that meant the world to her. To see that she is missed and the kids want her to come back made her light up. She read the cards over and over again, smiling. It’s the first time, I think, that she has felt missed at school.

So, we’re putting last week behind us… it was rotten, but we made it and that’s what counts. I am a firm believer that it doesn’t matter how messy it looks while you’re making it through, it’s the fact that you came out the other side that matters.

Now, I am going to sleep in my daughter’s room… again… because she can’t sleep without the dog. Anybody have a sleepy dog for rent?

Love,
Beth

We Almost Made It Through Sunday

October 11, 2009dec 08 015 Just when we thought we had gotten through this rotten, unending week, our beloved border collie, Millie, died today. She was 12 and over the past few months, had seemed to be getting old quickly. Today, she suddenly was unable to move and John quietly took her to the emergency vet so as not to upset the kids. The vet said she had several cancerous tumors and one had ruptured causing internal bleeding. John called to say she would only live an hour at best and I piled the kids in car and left a check taped to the door for the pizza guy who was on his way. In the car, I explained to Tanner that Millie was an old dog and had a cyst that was bleeding in her tummy and that the kind thing to do was to keep her from suffering any more.

Together, the four of us said goodbye to our sweet, gentle, Frisbee-loving dog and watching her pass peacefully. Tanner sobbed while Jake patted her and said, “Bye, bye Millie.” This sweet dog slept at the end of Tanner’s bed every night to keep away the monsters and keep a child with an active imagination “safe” at night. She was intelligent, loyal and the model of good doggy behavior. She is already missed.

Sadly, Millie’s passing is just one more loss for Tanner. Millie was her security blanket at night and she has been up 4 times already in the first 2 hours after bedtime. John will go sleep in her room tonight; if I go, I will wake her with my coughing. It was the worst possible time for this to happen (not that there’s a good time for your dog to die) when she most needs comfort and security in what is often a very scary world for her. I’m not sure what we will do.

John is devastated and keeps questioning whether he did the right thing by not opting for a surgery option which the vet said would only give Millie a few months. It would definitely have been nice to have some time to prepare Tanner for her passing. It was just so sudden (it all happened in a matter of an hour) and I think it’s hard not to second guess a decision you feel you made in haste, even if it was the right one.

We’re all tired from the week behind us, with nothing to really look forward to this week.

As John said when I came down from putting Jake to bed, “I want a do-over.” I think he was talking about the dog, but I was thinking about 2009.

Love,
Beth

Clinic Day #17

October 7, 2009

This evening as I stroked Tanner’s head and tried to comfort her until the Zofran and Oxycodone kicked in, I looked down to see two bruises on her thighs where the Peg shots were administered and was reminded of all she has been through in this seemingly endless week.

Those long-dreaded Peg shots turned out to be just one of the many trials this week that have shed some light on why this stage of treatment is called Delayed Intensification. First, there was the pneumonia-ish illness, three days in the hospital, the Peg shots, a breathing treatment that burned her mouth and upset her terribly, the steroids and, finally, back to the clinic today for Vincristine and the nauseating Doxirubicin.

She seemed very tired this morning before going to the Clinic and had a little crying jag about having to take a bath and having to go to Clinic. She wanted me to go with her, which of course I couldn’t, but John’s Mom went with them, so she got to have her E. with her. Clinic went well and she seemed to be feeling pretty well when she got home with her steroid-inspired McDonald’s Happy Meal. But, shortly after eating, she began feeling bad and fell asleep for several hours. When she woke she felt terrible, but we were able to get her nausea under control with medication, so we did better than last time overall. She has figured out that it’s the red chemo that makes her so sick and asked why she had to take something that made her feel so bad. When I explained that we only had to take red chemo one more time, she said looked at me with her pale little face pinched in pain and said she could stand one more time… amazing.

Surprisingly, the steroids have been fairly anticlimactic. She has really handled them well, with minimal mood swings or erratic behavior. The food obsession has kicked in and she wants cheese, grease, fat and more cheese. She literally begged me for McDonald’s hash browns this morning and I found myself at Kroger at 6:30 buying Velveeta for nachos! We finished the last steroid pill this morning and are off them for the next week…. Hurray!

So, now is the really hard part… knowing that we will do it all again next week… and the week after, and the week after. This is a marathon for sure, and there is little time to regroup before the next big hill is upon you.

My poor husband wins the MVP award this week. He has been Mom, Dad, Employee and Nurse this week and has kept his sense of humor to boot. There was a point today where he looked a little like if someone asked him for one more thing little pieces of him might start falling off of him… an ear, an arm, a finger. He just looked too stretched and I felt terrible that when everything was so awful, instead of pulling my weight, I had been just another burden this week. Bronchitis is hard for me to kick and even though I feel better, I still had to lie down for the majority of the afternoon in order to stop coughing.

And, Most Valuable New Recruit goes to John’s mom who rescued us this week, for sure. She has a job and a very busy life and dropped everything in a moment’s notice to help us. I, literally, could not have done it without her. I was down for the count on Tuesday and could not have taken care of Jake that day. Thanks to her, I was able to get the rest I needed.

And, last but not least, to my friends who showed up at my door with food (you know who you are)… what can I say? We are being carried through this journey on the shoulders of those we love and who, thankfully, love us back.

Week one of DI down, seven more to go. Don’t leave us now… we’ll be needing you…

Love,
Beth

Coming Home!

October 7, 2009

Yay! Tanner is coming home this afternoon. Can’t wait to get my hands on that girl! Jake and I have missed her and Daddy terribly.

She does have to go back tomorrow for clinic and chemo, which sucks, but we’ll cross that bridge when we come to it.

Had the Peg shots last night and John said they went as well as he could have hoped, considering they are so painful. The Atavan was a gift and we will be using it for these types of procedures from now on.

She is still hoarse and coughing quite a bit, but the docs feel like her lungs sound good and she is full of very powerful antibiotics.

Nuff said.

Beth

Hospital Update

Tanner showing off her dinosaur oxygen mask!!  She's smiling under there.

Tanner showing off her dinosaur oxygen mask!! She's smiling under there.

October 6, 2009 Tanner is feeling much better and will likely get to go home tomorrow. They were going to send her home today, but apparently needed to adjust one of the antibiotics they are giving her to make sure she is getting enough to be effective. They give that particular antibiotic by weight then measure it in the blood. Tanner’s body processes it quickly and she didn’t have enough in her bloodstream to be effective. So, one more day. Doctors say her lungs sound better and she has no fever.

She misses her Mommy, though. It is excrutiating for her to be there and not be able to be holding her hand or kissing her little face. Kids want their mommies when they are sick, and it is killing me to be stuck here, sick myself. John is awesome though and she had a visit today from the children’s minister at our church. I hate that he is having to handle this totally by himself… I feel useless.

They will do the dreaded Peg shots this afternoon. Hope they are quick and that the Ativan helps her handle them more easily.

Love,
Beth

In the Hospital

October 4, 2009
As we feared, Tanner woke this morning with a fever and her cough had worsened. We didn’t wait for her appointment for the Peg Shots, but took her right in instead. I also woke this morning worse for wear, so John took her since I can’t expose the kids on that unit to my germs.

They found the beginning stages of pneumonia, so they are keeping her at least overnight and giving her IV antibiotics to help her recover. She escaped the Peg shots today… they haven’t said when they will give them, but we did learn that the Atavan works wonders for her anxiety. We gave it to her not knowing if they would give her the shots or not. They were going to give them to her initially, and even went so far as to put numbing cream on her legs and she handled it with great humor. But, once her oxygen level started dropping due to the pneumonia, they decided not to give them today. Thank God. All she needs is to be nauseated and throwing up on top of this illness.

I went to the doctor, too, and have bronchitis, so I cannot go to the hospital tonight. It is killing me not to be there.

John’s Mom is coming in the morning to help, so we’re all good. It will just be Jakey and me tonight.

I’ll keep you posted if we find out anything else.

Love,
Beth

We’ll See What Happens Tomorrow

October 4, 2009 We’re just sick and tired… or at least I am. Tanner woke up Friday morning still pretty sick and slept for several hours mid-morning while my good friend Shelley took Jake to McDonalds with her little boy to play. By afternoon, though, Tanner was feeling a little better and by evening, it seemed like the worst of the nausea was finally at bay. Saturday morning she woke up feeling good and John took she and Jake bike riding in the morning. In the afternoon, we played on the school playground next to our neighborhood and I was impressed by how far she ran across the field and how much energy she seemed to have. But, she and I both began to cough Saturday afternoon. By Saturday night, both of us were hoarse and coughing quite a bit.

So, all day today, no one got out of their jammies. We played on computers, watched TV, painted our faces and generally took it easy. Tanner had a low fever in the 99s this afternoon and we started getting ourselves ready for a trip to the ER. But, her temperature had returned to normal by bedtime. So, we’ll keep an eye on her and hope for the best.

I can tell you that I had no energy at all today and felt pretty bad. So, I’m assuming she felt the same, but you would never know it. I kept telling John I was going to be pretty embarrassed if a kid with leukemia on tons of chemo kicked a cold that I couldn’t kick, but it may be true! She definitely had more energy than I did today.

We’ve been waiting for the steroids to rear their ugly head, but so far, so good. She’s had three full days and I suspect by tomorrow, we’ll start seeing some effect. For now, though, she’s been very good humored and isn’t eating a ton either.

So, tomorrow is a dreaded day… Peg shot day. I will be interested to see if they even give her the shots considering she obviously has some kind of virus. Even though I dread the shots, I just want to get them over with. I just get sick every time I think of it. It’s one of those moments when I feel like I am lying to her by not telling her about them, and even though I know it makes it easier for, I feel rotten about it. I just will never forget her looking at me and asking, “Why did you let them do that to me?” the last time we had these shots. Hopefully, the anti-anxiety drug we will give her beforehand will make it easier.

I’m not really sure how the chemo given through these shots will affect her. The side effects listed in my childhood leukemia book are numerous, but she was so sick from the leukemia last time she had these shots, you couldn’t tell what came from what. She goes back again on Thursday to receive Vincristine and the Doxirubicin that made her so sick last week. Needless to say, I think this is going to be a very tough month.
So, we need some positive mojo, here… prayers, well wishes, good karma in the universe… all these things. Hopefully, no fever by morning and the Peg shots go as well as possible.

Love,
Beth

Tanner Page… My Hero

IMG_1231October 2, 2009 Tonight, as we crossed the Shelby Street Bridge, I looked behind me and in front of me to see thousands of illuminated red balloons, marching along at a determined pace, sweeping along with them the occasional bobbing white balloon for blood cancer survivors and too many gold balloons marking the loss of a loved one. Among these red balloons carried by those who love and support someone currently fighting blood cancer or someone who has survived and beaten it, somewhere around the middle of the pack, was a white balloon attached to a red wagon carrying a pale, but determined six-year-old propped up on pillows and wrapped in a pink High School Musical blanket. That child was my daughter and I was prouder of her in that moment than I have ever been before.

When I left the house at 5:30 pm to make my way to LP Field and meet up with Team Tanner, she was in my bed having managed to choke down a slice of bread and some applesauce. It was the first food she had eaten since the night before and she looked weak and sick, but was firm on the fact that she and John would meet me at the walk a little later. On my way downtown, John called to say she had thrown up 3 or 4 times and that they would not be coming. My heart sank… she wanted this so badly, had worked so hard to raise this money. While we were still on the phone, John says, “Wait, she’s up and says she’s coming!” We talked about keeping her home, but decided to let her make the call and she and John said they would be on their way shortly.

Tanner arrived, packed comfortably in her wagon, with a tired smile on her face, but happy. She said she felt better and joked and posed for pictures with the team. She never got out of the wagon except to go the bathroom and, even then, I carried her the few steps to and from the port-a-potty, but she never complained, and even perked up enough to, hilariously, eat a barbecue sandwich while being pulled through downtown Nashville by her Dad. She made it on sheer grit, a childlike desire for fun, and a maturity I had never seen her show on this level.

The walk was a beautiful event. The weather was perfect, downtown Nashville sparkled and there was an impressive turnout. I thought I would be a weepy mess, but I only cried once, when we found the luminary that Keith Harper created for her, lit along the side of the road with many others. It said, “Tanner Page, My Hero.” Indeed.IMG_1228

Other than that, it was a mostly joyous event that was too uplifting to make me cry. Even those who were walking in memorial of a loved seemed to be celebrating a life lived well, if not ended well.

Our team was wonderful and perfect, a great mix of our friends, some co-workers, some former co-workers, some church members, and some just old friends. I am glad to have shared this magical night with them… it was special for all of us, I think. Thanks to Robin, Kim, Beth, Glenn, Paula, Rebecca K and Rebecca L, Anna Lynn, Abbey, Amy, Keith, Leslie, Pat, Bobby, Lauren and Larry for walking with us. And, many thanks to everyone who donated; we raised more than $7,500. Larry wins the prize for having travelled the furthest; he hails from New Jersey and had flown in the night before from Maine, just to walk with us. Rebecca K wins the trooper award for walking nearly two miles and standing on her feet for an hour beforehand while 9 months pregnant (I am not worthy…). We are blessed many times over to have such wonderful friends who are carrying us through like the red balloons carried the whites.

We carried adorable signs that Robin made, with pictures of Tanner and slogans like “We love Tanner,” and “Team Tanner Rocks.” I think Tanner realized, for the first time, that she is not alone. That there are lots of people with cancer, that there are tons of people who love her, and that she is never alone in this journey, although she probably feels like it sometimes.

On the way home, I looked into the rearview mirror to see my little girl, asleep with the chain of glow bracelets Anna Lynn had brought her looped over her ears and dangling down, ridiculously. She had joked only minutes before that they looked like earrings, then asked if she could have her nighttime meds when we got home because she was starting to feel sick again. She looked beautiful and strong, even though she was pale and physically weak, and I marveled at her determination.

This is my daughter. And she is fighting cancer tooth and nail.

Love,
Beth

Blessings & Curses

September 30, 2009 Tomorrow will be both a blessing and a curse. It is the long-awaited day of the Light the Night walk for Leukemia and Lymphoma Society, a joyous day we have been really looking forward to. But, it is also the first day of the Delayed Intensification treatment phase, a day we have been dreading.

It will be an odd day, but I think it’s awesome that it will end on the up note with the walk at 7:30 at LP Field.

We are still hopeful that Tanner will be able to come, but there are certainly a lot of hurdles to jump. First, her counts will have to be high enough for the doctor to clear her (we’re pretty confident about this as her counts have been high and she did not have chemo last week). Second, if her hemoglobin has gone down and she has to have a transfusion tomorrow, we will be at clinic for so long, we probably wouldn’t make it. Third, she has to feel like coming (and this is where we may find our sticking point).

Tanner’s first day of Delayed Intensification starts with a bang. The whole goal of this phase of treatment is to ferret out and destroy any insidious little leukemia cells that may be hiding, and for that job, they bring in the heavy artillery. Tomorrow, Tanner will have a lumbar puncture with and injection of methotrexate, an IV infusion of Vincristine and an IV infusion of Doxorubicin, a chemo she has never taken. In addition, she starts the dreaded oral steroid, dexamethasone. We’re hoping with a nap in the afternoon, we can bring the wagon and pull her when she gets tired. She really wants to come. So, we’ll see.

We are so honored by those who have chosen to donate to Tanner’s team. It floors us that we have had to raise our goal not once, but 3 times, due to the overwhelming generosity of friends, family and some we have never met. We have currently raised more than $7,200. I cannot find the right words to thank people enough or to explain what this has meant to us… to have something like this to look forward to.

Our friend, Rebecca Little, has a way with words and best summed up the way this event has made us feel. She said we must feel like the guy on the cell phone commercials with the huge network behind him. Only our network is one of love and support! What a perfect analogy! Every donation, every person signed up to walk, every wish for success, has wrapped us in love and support… and tomorrow night we will literally be surrounded by it. I so hope that Tanner can come. She needs to feel what John and I feel, and I think tomorrow night is the kind of night even a six-year-old can understand.

Thank you is not the right word… I just can’t find one that is adequate.

Love,
Beth