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

Clinic Day #15

October 1, 2009 After a pretty smooth clinic day, we’re still on the fence as to whether Tanner will be able to attend the Light the Night Walk tonight. She passed the first two hurdles… good counts and no transfusion necessary… but has yet to pass the third… feeling good.

This new chemo, Doxorubicin, she received today has really made her nauseated and she feels pretty lousy. I just gave her a dose of anti-nausea medicine 4 hours early, but don’t know if that will do the trick or not. She’s in my bedroom for a nap and I am hoping she will wake up feeling better. Bless her heart, she told everyone at the hospital today that she was going tonight and is so excited. She told me not fifteen minutes ago that she still wanted to go even if she didn’t feel good. She said we could pull her in the wagon.

Agggghhhhhh. This stinking chemo!

The good news is that her hemoglobin pulled itself back up to an acceptable level without having to have the transfusion. We did have to hold her down again today to get her anesthesia…. She was terrified. The doctor is going to give her some versed next time beforehand to lessen her anxiety. We’re also going to give her some anti-anxiety meds before she has her peg shots on Monday. The Peg shots are two shots given simultaneously in the thighs that are very painful. Tanner is terrified of shots and we won’t tell her until right before they give them to her which means we can’t do any of the numbing cream or ice to help with the pain. Needless to say, I dread Monday.

So far, Delayed Intensification is living up to its name.

Hopefully, she’ll see some of you tonight…

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

Golf Carts and Scarecrows

IMG_1216September 29, 2009 It’s a strange title for a post, but I couldn’t think of any other way to sum up our jam packed and super fun day today. We got up this morning and headed to Lily’s house for a play date. You’ve probably heard us talk about Lily before… she is 8-years-old and has pre-b ALL, just like Tanner. She and Tanner had such a good time playing and her Mom, Larisa, and I got to swap stories and share information, so it was good all around. Lily has a little Chihuahua named Rosie that Tanner fell in love with and she spent the rest of the day asking me if we could get one after our dog, Millie dies… thank God the dog can’t understand English.

Larisa took us all, even Rosie, on a ride around their neighborhood to tour some playgrounds and parks in their golf cart. Everyone loved that and it was such a beautiful day. It just felt so good to be out. And, I think it probably felt good for Tanner and Lily to be playing with someone that just “gets it” with no explanation needed. Lily had to take some medicine while we were there and I could see Tanner thinking, “just like me.” Both girls are out of school now, so we’ll try to get together again soon.

We came home after Lily’s house and ate lunch. Tanner got up to go to the bathroom and fell down, then she fell down on the way back… uh oh. Five minutes later, she was sitting on the couch and just began screaming and grabbing her right leg. I could tell she was in great pain and no position we tried to lay her in helped. I ended up having to give her pain killer, which eventually made her more comfortable, but she lay on the sofa and whimpered on and off for the next hour or so. She was supposed to have a dance lesson, but we canceled it. She started having pain in her leg last night and I noticed her limping on it several times today. I assume it’s neurapathy from the Vincristine, but it’s still unsettling as this is the leg that hurt so bad from the leukemia at diagnosis.

The painkiller eventually did it’s job and we went to a friend’s house for pizza and scarecrow making. All the kids stuffed their own clothes and created some very cute scarecrows. It was great fun and Tanner just seemed like one of the girls with these friends who have been so unfailingly good to us. I got a lot of grown-up girlfriend time today too, which I think really lifted my spirits.

Tanner’s six-year-old friend, Leah, held a lemonade stand today to raise money for Light the Night… so, so sweet. We’re taking her proceeds with us to the coinstar tomorrow so we can count it up and make another donation. We’ve raised almost $7,000 thus far, surpassing our original goal of $5,000 and even our second goal of $6,5000. We’re humbled beyond humbled and so hopeful that Tanner will be able to come to the walk and see all those who will be there to support her. I know I will be an emotional mess that night… it’s really just too much to believe people’s kindness. If you see the blond woman mopping her eyes and sobbing at LP Field, it will be me.

What a great day!

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

Clinic Day #14

September 24, 2009 I’ve yawned and rubbed my eyes through this entire day and just finished spray n’washing a mound of laundry, so I’m going to make this update brief and go to bed.

John took Tanner to Clinic today while I stayed home and tried to get done some of the things I keep not getting to recently. She just went in to have blood drawn for Counts and we were concerned she would have to get a blood transfusion if her Hemoglobin levels had dropped any more than the previous week. They had dropped some (down to 8 from 8.5). Somewhere around 13 is normal and below 8, they will consider transfusing, but the doctor thought that since Tanner wasn’t really experiencing many symptoms (i.e. her energy level is at it’s normal uncanny level) and she was not receiving any chemo this week, she did not need one. Again, we’ll watch her to see if anything changes, but they anticipate that level to be rising.

Her neutraphil level, which is the other level they watch carefully and is indicative of her infection fighting ability, was still great, although it had dropped 1500 points to 2000 from 3500 last week. Although the normal person would have between 5-10,000, 2000 is still excellent for a kid on chemo and they were pleased.

So, barring any unforeseen drops in levels, Tanner will begin the dreaded Delayed Intensification phase of treatment next Thursday by beginning steroids, receiving an IV dose of Vincristine and getting a lumbar puncture with Methotrexate. Nothing like starting with a bang.

Thursday is also the day of the Leukemia and Lymphoma Society’s Light the Night walk to raise money to find a cure for blood cancers. Team Tanner has raised $4,925 so far, just $75 short of our $5,000 goal. But, we don’t want to stop at our goal, we want Tanner’s team to be #1. (We were #2 at the point when they gave away the Taylor Swift tickets.) Sooooo, if you haven’t donated yet, but feel moved to do so, you have 6 more days to do it. Just go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner and click on donate. Tanner is planning on holing a lemonade stand in the next week so she can donate to her team as well and… as long as her counts hold up and she holds up after a day of surgery and chemo… she will be allowed to walk with us and carry the white balloon!!! All of us who are walking will carry a red balloon in support of her. At first, she didn’t want to do this walk because she was embarrassed for people to know she has cancer, but now she is excited and hopes to be able to do it. She’s really started to accept that she has cancer and to believe that people still love and support her.

Brief post… I am just not capable apparently.

Good night,
Beth