Hopefully Our Last Night in the Hospital for a While

photoOctober 29, 2009 So close… so close… just one more night without fever and we can go home! Nine days is a long time and we are all ready for this to be over and so thankful that she has recovered so well.

She felt so much better today with no fever, not even a low-grade fever. We will come home with her port accessed and have to administer IV antibiotics 4 times a day as well as 2 oral antibiotics. They taught us today how to flush her line with saline and use heparin to assure the line stays clear. It’s not rocket science, but still a little unnerving. They’ll teach us tomorrow how to do the IV antibiotic infusion.

She got to dress up today in a costume that the hospital gave her and they handed out Halloween goody bags. The Predators were there and they had a Halloween party downstairs, but Tanner is confined to her room and couldn’t go to any of that. She has not left her room for the entire nine days except to go to a CT Scan. I know she must be sick of looking at those walls.

We had a fun day. In addition to dressing up in the costume, we made some Halloween decorations for the door, had Chik-fil-a brought in by my good friend Melissa, played Wii with the physical therapists and watched some good movies.

Kida from The Lost Island of Atlantis

Kida from The Lost Island of Atlantis

So, barring any unforeseen fevers, we should be home for Halloween… a small miracle and we’ll take it! Now, if we can just do something about the rainy forecast…

Love,
Beth

Finally… A Reason for the Fevers

October 25, 2009 After five straight days of unrelenting fevers, the doctors ordered a CT scan today to determine if she might have a hidden infection that was not showing up in her bloodstream. They found pneumonia in her left lung and believe that is what is causing the fevers, coughing and pain in her stomach and chest when she coughs.

Whew! I know it seems weird to be happy about pneumonia, but she has a better chance of winning if we know what we’re fighting against. I feel a huge sense of relief that there is something we can do about it instead of just watching and waiting. Her fever today reached 104.5, which starts to get scary.

They’re not sure whether or not the pneumonia is a secondary infection from a virus she may have had last week or whether she had it all along, but it progressed too slowly to show up on the two x-rays she had earlier. The CT scan is more sensitive and may have caught something the x-ray couldn’t see.

They had already added another broad spectrum antibiotic earlier today as a prophylactic measure since the one she was already on wasn’t stopping the fevers. So, they’ll give that a day or so to work and decide whether she needs another as well.

So, we’ll probably be here a few more days, I believe. She was really too sick today to be bored. She didn’t really feel like doing much. She mainly watched a Punky Brewster DVD I found at Target, took a big nap and played a little on her computer. She loved getting some emails from people, but I knew she didn’t feel well when she didn’t want to answer them or write a blog post.

On a positive note, her neutraphils continued to come up today… they are at 630, up from 490 yesterday, so we’re making progress.

She has handled herself with more grace than I would have considering how bad she must feel. I’m amazed at the maturity she has acquired through this horrible ordeal and, at the same time, sad she’s had to grow up so fast at six.

Thanks to all of you who sent Vandy email cards to the hospital. They brought them in all printed out this morning and they made her smile.

She’s sleeping soundly and I’m going to try to do the same before someone comes in for something else!

Love,
Beth

Still Hanging in There

October 25, 2009 Tanner’s fevers continue, in fact, they seem to be defying the Tylenol now. Doctors are pretty convinced it’s viral since it’s not responding to antibiotics and her white counts have gone down since yesterday, an indication she is fighting something viral. Her hemoglobin was up a little bit, though and her neutraphils had made a big jump – from 190 to 450!!! Unfortunately, neutraphils fight bacterial infections, which Tanner apparently doesn’t have. So, we’re happy their going up, but they don’t help much in this situation.

She also seems to feel worse today. She was much more lively yesterday. So, I don’t really know where we are… I guess just more watching and waiting.

She and I sat and read all the comments about her new wig and hat today… it really made her smile. Thank you so much to everyone who has been so kind and had such good words of wisdom for her.

Tomorrow, we will get the remaining wispies shaved off of her head. The hospital has an approved hair shaver that, I guess, is extra careful about cutting heads. Hopefully, that will make her head less itchy.

Hopefully, the fever will break soon.

Love,
Beth

Kicking those steroids to the curb

October 21, 2009 Tanner finished this pulse of steroids tonight! Yay! No more until Long Term Maintenance. It is my understanding that steroids affect the kids in all different ways… some get hyper, some get really belligerent, some get super sad. Tanner acts as if she has been run over by a truck. She is just limp— physically and emotionally. Today, I was helping her get to the bathroom and I noticed she didn’t grip my hand at all, she just let it lay in mine… limp.

I am feeling better today. The antibiotics kicked in and I was even able to take off my mask. My friend Beth invited us over this morning to hang out at her house with mutual friend Anna Lynn and her daughter Elise while the two earth mommas were making applesauce (no one even suggested that I participate in that!). It was a great idea because it gave me the opportunity to wear Jake out running on Beth’s acre and a half while Tanner could lie on the couch. Tanner really wanted to go, even though she felt so bad. I carried her to the car and she slept most of the way there. When we got there, I carried her in the house and put her down in a big, comfy chair and she never moved until we left. Just sat in the chair and watched TV and spoke when she was spoken to. Poor thing. Jake did get the expected exercise looking for the geese that were not at the pond and jumping over goose poop (his idea, not mine). Tanner got a change of scenery, but she was wiped out when we left.

Beth and her husband Glenn came over later and made us some yummy shrimp scampi and ate with us. It was a nice day, despite the fact that Tanner felt so lousy.

Now, we just have to wait until the steroids get out of her system. She started to get a stuffy nose and is coughing tonight, so I’m hoping she’s not getting sick. She said it was hard to breathe, which could either mean her lungs have some fluid in them or she could have low hemoglobin, which carries oxygen in your blood.

She is also losing hair by the fistful. At this rate, she may not have any hair by next week. I must have combed big piles of dead hair off of her 7 or 8 times today… it’s heartbreaking. She doesn’t seem bothered by it, but she’s so numb from the steroids, I don’t know if that’s a true reaction or not. I pulled a big hunk off her back today and put it in my jewelry box so later, when she is bald and missing her hair, we can pull it out and remember how beautiful it will be when it grows back.

This is definitely the most tenuous and stressful phase of her treatment besides the first month after her diagnosis. It is every bit as difficult as we imagined it could be. I am worried constantly. Does she look anemic? Is she getting sick? What will this next round of chemo do to her? Will she need a transfusion? How will she handle losing her hair? Will she be able to trick-or-treat? Etc., etc., etc. It’s exhausting. Oddly enough, I’m not normally a “worrier.” But, you would have to be dead not to worry. I’m trying to just look ahead one day at a time… that’s all I can really count on.

Tomorrow is Clinic Day. We’re just going in for counts, so it should be quick unless she needs a transfusion, and then it will be really long (see what I mean by not being able to count on anything?). Hopefully, she beats the sniffles and doesn’t wake up sick. They told us she would likely be in the hospital 2 or 3 times during DI, but surely they didn’t mean all in the first month?

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

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

Lemonade for Leukemia

Lemonade for Leukemia

Lemonade for Leukemia

September 28, 2009 This afternoon, Tanner, Jake and I made a pink sign that said, “Lemonade for Leukemia.” Then, while Tanner had school with Mrs. O’Hara in her classroom, Jake and I made lemonade and packed the wagon with a card table and chairs, cups and Leukemia and Lymphoma Society red bracelets.

At 5:10, we pulled the wagon across the street and set up shop. An hour later, we packed back up, having collected $259 for Tanner’s Light the Night Team. Yes, you read correctly… $259!!! Tanner is so excited. We came home and I thought after dinner we would count up the money and make the donation on-line. But, Tanner had other ideas… she wanted to know if she could have the loose change that John and I throw into various containers throughout the house. Needless to say, we’re taking it tomorrow to Kroger to put it in the Coinstar machine to be counted.

But, here’s the best part… she lost a tooth today (that’s a whole other story) and we put it under her pillow for the tooth fairy. After putting her to bed, I came down to eat dinner and she showed up on the balcony and said, “Mom, I want to write a note to the tooth fairy to ask for extra money for Light the Night. Can you help me?”

So, she dictated the following note:

Dear Tooth Fairy,
Please leave extra money so I can get ahead of the other team and have the most money for Light the Night.
Love, Tanner, Jake, Mommy and Tanner

She asked me, while I was writing the note, why I kept laughing. I wanted to tell her that I loved her competitiveness, her never-give-up attitude and her wonderful innocence in thinking that we could somehow make up the $4,000 that separates us from the first place team. That is the attitude that will help her come through this stronger than before and I love seeing it.

So, look out! Tanner Page is on a rampage to be the high dollar fundraiser for Light the Night this year.

I want to thank my friend Robin Embry for putting together this Light the Night team for us and all my dear friends at Lovell Communications for jumping in to help. I don’t think we would have ever done this without her and it has turned out to be the most positive thing for us. I know that I’ve dedicated a lot of blog space to this event, but it’s not just because we want so badly to see this cancer eradicated. This fundraiser has given us, and especially Tanner, something positive to focus on and has empowered her to feel like she could have some effect on this disease. That is priceless and we thank everyone for helping her feel this way.

Now, excuse me while I go find my wallet and make sure the tooth fairy is generous.

Love,
Beth

This Is How a Cure Happens

September 27, 2009 I’ve been sitting here on the sofa for the last hour writing thank you emails to those who have donated to Tanner’s Light the Night Team. I’m happy to say it’s not the first time I’ve spent time writing thank yous for the event, nor will it be the last, as I am still not finished. I’ve had tears in my eyes for the vast majority of the time I’ve been writing. I can’t believe the generosity of our friends, our family and those we have never even met.

Tanner was so excited when I told her that we had passed our goal. In fact, we haven’t just passed it, we’ve blown right by it in a flurry of generosity that has made me hopeful that someday, no one will have to ever get leukemia. In the past four days, we have raised another $1,000 for a total, as of this writing, of $5,920. I can’t believe it!

This is a how a cure happens… one donation at a time… donations in honor of a little girl who appreciates it so much.

We’re planning our lemonade stand for this week so Tanner can contribute as well. She’s really excited and so hopeful that she’ll be able to walk with us on Thursday. John and I said today it will be a “perfect storm” of circumstances if she is able to come, but we’re still hoping.

We had a wonderful weekend. My parents took on the responsibility of Tanner’s medication (I didn’t realize how complicated it was until I tried to explain it) and kept the kids overnight while John and stayed in downtown Nashville Friday night. We had a great dinner at my favorite restaurant, a good night’s sleep and a leisurely, uninterrupted breakfast before meandering our way home Saturday afternoon. It was wonderful and my parents are awesome. They stayed with us Saturday night and the kids loved getting to see them.

Tanner has had some odd moments of not feeling well and not being able to describe her symptoms that have me worrying about her red counts, but her energy continues to be great, so I’m trying not to worry about it. Poor thing, I keep staring at her face to see if her lips are blue and picking up her hands to look at her fingernails. I’m sure she’s sick of me.

We have some cancer kid friends that need your prayers … Tanner reminded me last night not to forget to pray for Kinsee – an eight-year-old with T-cell ALL who goes to St. Jude on Tuesday to begin preparing for a bone-marrow transplant. She will undergo intensive radiation and chemo treatments until all the cells in her bone marrow have been killed and her white counts are down to 0. Then, they will transplant the donor’s marrow into her bones and see if she recovers. She will be in the hospital for a minimum of 100 days. This is a very dangerous procedure that, Thank God, is not part of Tanner’s treatment plan.

Another eight-year-old you have probably heard me talk about, Lily, has had very low neutraphil counts. Neutraphils are your big, infection-fighting white cells and a normal count level would be from 5-10,000. Lily’s neutraphils last week were at 300. She has had to be pulled out of school until her counts recover, after just having been able to return. Lily has not been feeling well the last two days and has had a low fever. Please pray that her immune system recovers and she does not have an infection or virus.

Thank you so much to everyone who has donated to help stop this disease, or at least find a more humane way of treating it.

We love you,
Beth

Happy Birthday to Me

September 23, 2009 If you read Tanner Time this morning, or if you were one of the 50 or so people who sent me some kind of good wishes today, you know it is my birthday. Wow! What can I say? How do you thank a husband who does something like that? Or, friends who send so many kind wishes?

Today was full of the normal things… laundry, dishes, diapers… but every time I checked my email, I got a little burst of birthday cheer! Then, my two best friends, Beth and Kim, and Beth’s husband, Glenn, brought dinner and cake to the house. We ate, sang, and laughed, a lot. My husband and kids gave me a giant singing card, money to go shopping and a subscription to People Magazine. It was the perfect kind of birthday.

Friday, my parents are coming to take care of the kids while John and I spend Friday night in downtown Nashville. What a treat for everyone! The kids will love having Grandmom and Grandad here and John and I will get a date night and our first uninterrupted night of sleep in a long time. Yay! My birthday will just go on and on… I love that!

Thank you so much for all the kind and encouraging words today… I was blushing by noon. If I’m only half as strong as people think I am, I’m doing okay ☺. Actually, there is an Eleanor Roosevelt quote printed on the back of my Leukemia and Lymphoma Society “Relentless” T-shirt that I hope to live up to some day. “Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”

I know myself enough to know that I am not the kind of person who will never complain, not the kind of person who will always put others first, not the kind of person who is eternally positive. I complain often and definitely have my down moments. But, I am strong, to the point of being stubborn sometimes. Fortunately, I think this is one of the requirements of making it through a journey like this. I believe Tanner may have inherited some of this stubborn strength from me. She is so strong willed that she can drive you crazy sometimes. But, she can also kick some serious cancer butt.

Today, I was brushing Tanner’s hair and quite a bit fell out. I gathered it up and was on my way to throw it in the trash, when Jake head butted Tanner… with his face. Blood everywhere, screaming, busted lip… ugh. Later, when we returned from Tanner’s play therapy appointment, Tanner found the clump of hair on the couch where I had abandoned it. She held it up in two hands and said in a kooky voice, “Awwww.” Then, she threw it up in the air, laughing, and ran off to play race cars with Jake. Just in case all those kind words today went to my head, my daughter reminded me to be humble in the face of true strength.

Hope your day was great, too.

Love,
Beth

To My Wife On Her Birthday!

I know all of you read this blog to learn about Tanner and get a glimpse into Tanner’s world through Beth’s eyes as well as to support us in this place where we find ourselves – and for the prayers and well wishes I thank you from the bottom of my heart!  I mean it – we could never make it through this without you!  I do not write like her, nor do I express myself as she does – (She is really good at this thing)   But today I want to make my post – and it is for my wife.

Beth Page

Beth Page

Beth Brisbane Page you are amazing!   One of your home co-workers cries and wets his pants (Jake),  the other is fighting an ugly disease that does not allow for a normal life of school, parties, etc (the time most moms get breaks)  – I want you to know that I realize that in many ways  this is as difficult for you as it is for Tanner – the feelings of being trapped in a house, the feelings of not wanting to go to clinic one more time, the feelings of exhaustion when no one sleeps at night – trust me I realize!  I watch you (a social butterfly is an understatement) a past VP of a Public Relations firm – working everyday with polly pockets and dinosaur toys.  I know that this gets old –  and the pretending games and motorcycle races drive you almost to the place of insanity – I realize – I promise!  But Baby – let me stop today on your birthday and in front of all these witnesses and remind you why I married you. I married you because…

  • you are strong!  You remind me of that everyday when you get up and start a new day of exactly what you did yesterday – not knowing how Tanner will feel, or if she will say thank you for the grind you work through each day.
  • you are smart! You remind me everyday when you learn something new about the disease and find new things we can do to make Tanner’s treatment better and easier for her.
  • you never give up!  You are the mother tiger – you fight for Tanner – if it the school, the hospital, or even me (for all the readers – I am a germ-a-phobe – If it were up to me Tanner would be in a bubble) Beth gives Tanner a life!
  • you are balanced!  You remind me everyday by how you make the kids exercise, do school work, give to others, and play without screens in front of their faces.
  • you are beautiful!  You look great in Pajamas or Jogging Pants, Dresses or Jeans – I know Jake tells you that you are cute all the time – maybe I need to learn from my 2 year old son and tell you more often!
  • you are you – no matter what any one else thinks!  That is a  lesson we all could learn – I am not sure that you have ever followed the crowd a day in your life – I do believe, however,  you may have looked which way the crowd was going and chose the other route for fun!
  • I just love you and I am crazy about you!

This post was so easy to write – and I could have gone on and on and on – that is how I know I love you – these things just spilled out – my fingers could not even keep up with my thoughts  – you are as amazing as I knew you would be when I married you – you are committed to our kids – advocate, cheerleader, mommy, and more – so on the days when you can’t feel it – read it!

We all stop and wish you a Happy Birthday!  You are a great mom and wife – you are my soulmate and my friend – you are amazing

Happy Birthday!