Category Archives: hope

Clinic Day #51

Posted on by
Reply

April 13, 2011

We got to meet Champ at Medical Play!

We really didn’t expect Tanner’s counts to come up to 1,000 or above today. Generally, counts below 500 take a while to come back up so we were genuinely surprised when Tanner’s neutraphils came back at 1,040 today!!!

I told Tanner, we high-fived in celebration and then she immediately asked, “Can I make to school for recess?” Too funny.

We missed recess, but we did high-tail it back in time for her to spend the afternoon happily at school. At pick-up, she bounced to the car with a big smile on her face and asked if we could play outside when we got home… which we did.

We got to see one of Tanner’s all-time favorite nurses today, too! Blaire was Tanner’s ER nurse that first touch-and-go night when she was lifeflighted to Vanderbilt two years ago. Then, she happened to also be our nurse when we first heard in the ER that Tanner probably had leukemia. Traumatic situations make for tight bonds. Blaire is now a advanced practice nurse in the ER ICU, so we haven’t seen her in a while (thankfully). We loved seeing her; she still keeps up with Tanner through Tanner Time.

Tanner and Blaire in 2009

So that’s the good news… here’s the part that keeps me from celebrating too much, though. We started back at 50% chemo dosage today and go in next Wednesday for her monthly IV Vincristine and a lumbar puncture with methotrexate… her Final Spinal. No rest for weary bone marrow, I tell you. Makes me a little nervous to pile so much chemo on as soon as her counts recover, but this is how cancer treatment works. You don’t stop for much of anything. Call us cautiously optimistic.

Many of you have been asking about Sleeping Beauty tickets. They went on sale today. You can get tickets by calling the Boilerroom Theatre in Franklin at 615-794-7744. The shows are on Saturday, May 21 at 3 pm; Sunday, May 22 at 7 pm; and Monday, May 23 at 7 pm. The theater is tiny (holds about 120) so call quickly for tickets. You’ll want to arrive at the theater ½ hour before to get a good seat. I must ask, for fear that we might sell out the theater with Tanner fans and some poor parent might actually miss her kid in his premiere, for you to please consider one of the evening shows. The matinee is very popular with families.

Thanks to everyone for the good mojo!!!!

Love,
Beth

Clinic Day #48

Posted on by
3

March 9, 2011

We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.

I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.

Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.

On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.

Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.

After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.

I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.

“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”

Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”

Tanner shook her head again.

“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”

“Yes,” she said with some little tears in the corners of her eyes.

“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”

My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”

By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.

I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.

On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.

Love,
Beth

An Army for Hope

Posted on by
4

February 2, 2011

I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.

I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.

Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).

The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.

I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:

Tanner’s Story in Numbers

25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine

This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.

It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.

Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!

We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.

It was a great night to hope.

Love,
Beth

Good Riddance 2009

Posted on by
7

December 3, 2009

I was so happy to write “2010” on a check I wrote yesterday. 2009, for lack of a more literate description, sucked. I don’t want to say this year couldn’t be any worse than last (my realm of possibility has seriously changed), because it, of course, could be. But, I’m hoping things are on the upswing as they seem to be.

Tanner is doing a little better this month on the steroids. We’ve seen some emotional behavior, but they haven’t wiped her out completely like they sometimes do… yet. She’s still taking them through Wednesday morning, so we’ll see. Overall, she is feeling good and we are much encouraged that the doctors felt comfortable with her not returning to clinic for a whole month. That indicates they believe her counts to be pretty stable, something that can usually take many months to achieve. We’ve taken that as a sign that we can comfortably have a little more freedom, which is nice.

We had a very busy weekend focusing on trying to get all the decisions made for the renovations on the new house. It’s fun to have something else to think about, but still, in the back of my mind, I feel like I have to rush, rush, rush because you never know when a hospital trip might pop up. It’s an awful thing to have in the back of your mind, but it’s just the way it is.

Still, it feels for the first time in a long time like our lives are not being held completely hostage by cancer. We’re moving forward, which is the way it should be.

Jake moved forward tonight. He slept in a bed for the first time instead of his crib. We bought him a racecar bed (he LOVES racecars) and he was so excited. It’s easy to forget about the “other child” in this situation. In fact, I forgot to take him to a birthday party on Saturday. I feel terrible. But tonight… he had his moment and he did great.

Have I mentioned that Tanner’s hair is growing back? It started out as this little white peach fuzz, but has since darkened and grown to where she has a soft down covering her entire head. It’s amazing how fast it is coming in. I can’t keep my hands off of her head – she feels like a little downy duckling. She is really hoping it will be brown and curly! It does actually look darker, but there’s no word yet on the curls. See, even her hair is moving forward.

So far, 2010 feels different. It’s not that the dance with cancer is over by any means; I know it will go on for another year and a half and it will be very difficult, but I feel a little lighter on my feet now. I used to wake every morning and my first thought would be, my daughter has leukemia. Now, I sometimes wake up thinking something else – the new house, renovations, getting a new dog – good things.

Here’s to more good things for all of us this year.

Love,
Beth

A Big Bump in the Road

Posted on by
3

December 21, 2009

Tanner’s ER visit seems to have been the beginning of a virus epidemic at the Page house. So far, John is the only one who has not gotten sick. Tanner’s oncologist thinks we all have adenovirus – sore throat, congestion, irritated eyes, and fever. Tanner actually is much better; she just has a cough at this point. I spent all yesterday in bed with a fever and body aches. Today, I am better, but not yet well. Jake continues to cough and just feel yucky. Everyone’s eyes have been bloodshot and irritated at some point.

We’re taking Tanner in for a chest x-ray tomorrow to be sure she’s not developing pneumonia again. If she’s okay and Jake and I feel better, we still may make it to Atlanta for Christmas Eve. I’m a little behind on my Santa duties, but I think we could do it.

Poor John is taking care of three sick people while trying to work from home as well. Once again, he is the lynchpin that holds us together.

So frustrating to have jumped through so many hoops to get to this point only to have a virus take us all down like this. We just can’t catch a break.

Keep us in your prayers. We’re hoping everyone is better tomorrow.

Love,
Beth

Courage

Posted on by
3

November 10, 2009

Tanner, Jake and I went in search of an uncrowded playground yesterday. We ended up at River Park in Brentwood. There were a few little boys Jake’s age, but not really any one else around. Tanner and I sat on a dinosaur together and watched Jake play with three little boys. She was not wearing her wig… she hasn’t worn it for even one minute since she shaved her head… and had a Hannah Montana bandana wrapped around her head.

While we were sitting there, another Mom sidled up to us and tactfully said, “Where does she go?” She caught me slightly off guard, but only for a second before I replied, “Vanderbilt.”

She told Tanner she liked her bandana and then stood next to me as we watched Tanner run off to play. Then she said, “My son went to St. Jude, but finished his treatment at Vanderbilt; we lost him when he was 12.”

We hadn’t even exchanged names yet, but I already knew her. I knew the long hours she spent in hospitals, dosing out medicine, waiting for test results, soothing a sick child, wishing it could be her instead of him. I knew her without saying anything else. I knew her except for that hole in her heart, which I have had to face but never had to actually accept.

After telling her how sorry I was for her loss, I said, “I can’t possibly know what it feels like to lose a child, but I can imagine it… because I’ve had to.” She just nodded.

John and I have had to face the possibility that Tanner might not live at least twice; once when she was lifeflighted to Vanderbilt for a drug reaction and doctors could not tell us whether she would live or die; and the other when she was diagnosed with leukemia. It’s a feeling you can’t really appreciate unless it’s happened to you, just like the feeling of actually losing a child is something I’ll never truly understand, although I think I might have a better idea than most.

The thing that struck me about this woman, who had lost her son just 4 years ago, was that she smiled when she talked about him. She explained that just last weekend, they had hosted the Hoover Run for Hope in Brentwood, in honor of her son, Liam Hoover, and that they had raised over $40,000 to give to St. Jude and Vanderbilt to help families of children with cancer. She and her husband had found a way to turn their grief into something positive and she was amazing in her strength.

This Cancer Parent Club is not one I ever wanted to join, but now that I’m here I find I meet the most amazing people. Fighting this horrible disease can sometimes bring out the best in someone. It’s a by-product of facing your worst fear every day and trying to make the best of it. I’m better for knowing the people I have met through this process, including Michelle Hoover, Liam’s mom. I’m touched by the stories they choose to share and by the way they unfailingly put aside their own worry or grief to try to soothe mine.

My Mom sent me an email from a friend of hers that had a quote at the bottom that struck her as appropriate and meaningful and I agree:

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying… “I will try again tomorrow.” –Mary Anne Radmacher

Yesterday, a quiet voice sidled up to me at a playground and showed me how to keep trying even when everyone would understand if you gave up.

Love,
Beth

We’ll See What Happens Tomorrow

Posted on by
Reply

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

Clinic Day #15

Posted on by
Reply

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

Posted on by
Reply

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

Great Day

Posted on by
2

Well, we finally had a great day! I got to talk to my daughter today for hours. She was super for most of the day. For the first time since we have been home, she actually walked around the house without holding anyone’s hand or using her cane.

For hours, we each lay on a twin bed in her room giggling, talking, reading, crafting, making a Father’s Day card for John, and, of course, eating. It was like a slumber party during the day. She actually asked me to read to her several different times and declared “Chemo to the Rescue” her favorite book. She and I were up most of the night before with stomach problems and just general steroid-induced sleeplessness. I’ve missed her so much, I didn’t want the day to end. We’re hoping for another good day tomorrow before chemo on Tuesday.

We have 8 days left of this first stage of treatment. It probably would be daunting for Tanner to understand how much is left, but I’m going to privately celebrate any milestone I can. Not this Tuesday, but next, is our last day of “Induction.” Tanner’s chemo treatment will have four phases: Induction, Consolidation, Delayed Intensification and Maintenance. The first three phases are varying degrees of intense therapy and will last 6-9 months, depending upon how Tanner responds and what, if any, delays we experience due to infections, low blood counts, etc. The last phase, maintenance, lasts years and is much less intense. It will be just monthly chemo treatments and is when most kids’ hair begins to grow back and they can resume normal activities like school.

The end of this induction phase also marks our last day of this intense steroid treatment. The steroids return later, but never for 28 straight days. So many of her most annoying side effects are, I believe, due to the steroids right now. Abdominal cramps, her bloated face and stomach, her mood swings and crazy appetitie, sleeplessness. Even Tanner knows how many days of steroids are left and we are counting the days on the calendar.

Here’s to another good day tomorrow.

Beth