Category Archives: emotions

A Blog Holiday

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November 30, 2009

Sorry to have not updated in so long… I was on a blog holiday… in honor of Thanksgiving. Okay, maybe I was just really tired and haven’t had anything very nice to say.

I feel so ungrateful admitting that. In reality, we had a nice holiday and I got out quite a bit over the long weekend. Tanner is feeling really good and we’ve been looking at houses again to see if we might find a big yard to romp in when we can’t be around others (ours is a postage stamp). I cut about six inches of hair off and feel so light and wonderfully different. (I felt conspicuous in this family with all that hair.) I saw New Moon with girlfriends and laughed more than I have in a long time. We got a Christmas tree on Sunday morning and actually went into the outdoor garden section of Home Depot with both kids in pajamas (the only public place we have been in almost a month). Tanner ran all over in iCarly pajamas with her pale, bald head uncovered. It was a sight to see.

So, I should have had lots of nice things to say, but somehow I just couldn’t write them down. Whenever I sat at the computer, I wanted to write about how frustrated and irritable we all are cooped up here. About how Tanner is not sleeping, waking 4-5 times a night, sometimes with nightmares, sometimes sleepwalking. She is getting up consistently now at 4:30-5:00 am for good. About how John and I are exhausted. About how Tanner and Jake, once fast friends, can now not spend 2 minutes together without fighting. About how Tanner has asked to go back to see the play therapist because she knows her emotions are out of control and she doesn’t know how to fix it.

I know I should be grateful that our plan to keep her isolated and avoid any more hospitalizations during this phase has been successful. And, I suspect her counts will have come up when we go to clinic on Friday and we will gain more freedom in just a few days. I know how I should be feeling, but I just can’t seem to get there.

Instead, I feel irritable and cranky (have I mentioned I don’t stay at home very well?) and tired of playing 2- and 6-year-old games. I feel desperate for normalcy and a little resentful of all those people I see just romping about taking their freedom for granted. I realize that makes me a glass half empty kind of girl this week, but that’s just the honest truth.

Thanksgiving night, after having a nightmare, Tanner asked me what good thought she could think about while she tried to go back to sleep. I was completely stumped. What good thing could she look forward to? A playdate with a friend? No. A birthday party? No. A special event at school? No. A movie with Mom and a girlfriend? No. No. No. No. No. No. Six months ago, I could have rattled off five fun things to look forward to without even thinking about it. Thursday night, a full 60 seconds after she asked me, I came up with this beauty: maybe you and Jake could get your little stuffed dogs and make a little bed and house for them out of a cardboard box… and decorate it. No wonder she showed up in our bedroom 5 minutes later crying that she was still scared.

It is a horrible feeling to realize your child has nothing to look forward to but another day spent with her Mom and her brother in the house or at some abandoned playground, hiding from other kids and germs.
Tanner’s state of mind is evident in her play. She has played cancer nurse every day for a week. She takes lab tests, delivers chemo, puts me and Jake to sleep for procedures and delivers the bad news that we have cancer… over and over again. This week, the cancer has taken advantage of our weariness and has moved in to take over.

Tanner has just woken up again for the third time already tonight. It promises to be another sleepless night. I snapped at her when she showed up at the balcony the third time, telling her to go back to bed and refusing to come up again and tuck her in… again. I’ll go check on her in 10 minutes and help her if she’s not asleep. There’s no way to know whether her sleeping problems are physical or emotional. I’m leaning towards emotional since she hasn’t had chemo in several weeks. Either way, they’re exhausting for all of us.

So, now you’ll wish I hadn’t broken my blog holiday. Hopefully, I’ll cheer up or it will warm up so we can at least go outside. Friday seems a long way away.

Love,
Beth

Another Battle Lost

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November 24, 2009

I am crying as I write this, crying for yet another child who has lost his life to cancer. I did not know him, but every time I hear about cancer taking a child so early, I can’t help but cry out of sadness for the child and his or her parents… and out of fear for my child. There are no words to describe the terror.

My Mom emailed me last week about a little 5-year-old boy she heard about who was losing his battle to neuroblastoma. He loved Christmas and his family was celebrating Christmas early while he was able. They put out a request on their blog that people send Christmas cards to him.

Yesterday, I told Tanner about Noah. I didn’t tell her he was dying, but that his family was trying to do something special for him, just like people do special things for her when she is having a hard time. She eagerly agreed to make a card for him and got right to work. She drew a Christmas ornament and wrote inside it, “Merry Christmas. Hi, my name is Tanner. I am six-years-old and I have cancer just like you. Love, Tanner.”

IMG_1303This morning when I woke up, she had gathered a small stuffed fox, a pumpkin eraser and a little fuzzy ball and put those items, along with the card, inside a large zip lock bag. Thirty minutes ago, I put the bag inside an envelope and addressed it to Noah, added stamps and dropped it into the mailbox. When I came in, out of curiosity, I decided to look him up on Caring Bridge to see if he had a site. He did not, but I googled him and found a host of new stories documenting how his family’s request for cards had gone viral and more than 1 million cards and gifts had come to their home. But, the family was asking people to please stop because they had celebrated Christmas on Nov. 8 and Noah had passed away… yesterday.

I can’t stop crying thinking how I now have to hide away the card and little gifts Tanner collected… little childhood treasures put together from the innocence of her heart… so I don’t have to explain to her that he died before he could receive them.

Noah Biorkmann received more than 1 million Christmas cards before he died yesterday

Noah Biorkmann received more than 1 million Christmas cards before he died yesterday

This disease is vile and heartless. It steals childhoods from innocent children and beautiful children from loving parents. It breaks my heart every day and I am sick of it.

Beth

A Long Day at the ER

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November 22, 2009

Since Thursday, when we went in for clinic and Tanner’s hemoglobin was so low, we’ve been keeping a close eye on her for signs that it was dropping even further or that it was producing symptoms that made her uncomfortable. After asking me to take her to bed at 6:30 last night, she woke up this morning with a headache and was very washed out looking. We decided not to wait until tomorrow to take her to clinic, so John took her to the ER around 11 am.

They arrived home at 9 pm with fresh blood and platelets in her system, tired, but with rosy cheeks and red lips. Her hemoglobin had dropped down to 6.6 from 7.2 on Thursday (anything under 8 is grounds for a transfusion, but Tanner was not showing any symptoms then so we decided to wait) and her platelets were down to 28 (normal is somewhere around 300). So, two bags of platelets and one bag of blood later, she should be feeling a lot better. Her neutraphils have, thankfully, not dropped from Thursday, so hopefully those have bottomed out and will start going back up so she is less vulnerable to infection.

We weren’t surprised or too upset that she needed a transfusion; it’s almost expected during DI and Tanner has really been lucky that this is only her second transfusion since diagnosis. We’re just thankful that she hasn’t caught anything while her immune system has been so compromised the past few weeks.

The anemia didn’t slow her down a whole lot this weekend. Saturday, Jessica, our friend, babysitter and petsitter extraordinaire, came and played with the kids all afternoon while John and I cleaned out the attic and garage and went to lunch together at Puckett’s in Lieper’s Fork. We were playing at the elementary school playground next door to the house when Jessica got there and Tanner never slowed down until Jessica left. They danced, played wii, and pretended all the day long. I think Tanner was just happy to see someone else but John, Jake and I. It’s been a while.

After John and Tanner left for the hospital today, I shaved Jake’s head. He wanted to look like Daddy and Tanner. All those little curls in the trash can. He loved it, though! I thought it was so cute that he wanted to look like them.

Jake's new hairdo

Jake's new hairdo

It looks like it will be another “keep to ourselves” kind of week… at least until Wednesday when we get our next counts check. That will let us know whether we can see John’s family for Thanksgiving or whether we need to keep it simple here at home with just us. It would be great to see John’s family, but either way will be fine; the way I see it, we have a lot to be thankful for.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

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November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

Love,
Beth

Bye, Bye DI !!!

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November 18, 2009

IMG_1286It’s here. Tomorrow is the last day of DI… the last day of the most intensive part of leukemia treatment… the last day before we enter LTM (Long Term Maintenance)… a day we have been working towards for six long, grueling months. I can’t believe it’s here.

We’re celebrating. I made t-shirts for Jake, John, Tanner and I and we are going to wear them to clinic tomorrow. I think we are also going to pass out something to the staff – I’m not sure what yet – maybe donuts? — to thank them for making this journey with us and for, literally, being our saviors.

John is picking up a cake on the way home from work tomorrow so we can celebrate with a special dinner. Depending on how her counts turn out tomorrow, we may invite some friends, but it’s not likely; we expect her counts to be low.

So, here’s how our friends and family can celebrate with us. Send a comment to Tanner congratulating her on the last day of DI. I want her to open up Tanner Time and Friends of Tanner and see how many people love her and realize what a big accomplishment this is.

We’ve really been celebrating all week. We’ve been visiting playgrounds and stopping by church to drop something off and getting to see the whole church staff (aka wonderful friends) and giving them hugs. Tanner got to spend the day with Aunt Beth today at her house (I think it must have magical properties the way our kids plead to go there) while Jake and I played some mean wii Star Wars. We’ve just been finding ways to remember how great it is to feel good and have the energy to have fun.

Yesterday was a great day. In fact, it was a ROGER DAY!!! Roger Day is a children’s recording artist who is big time at our house and he was so nice to stop by and bring Tanner his newest CD, Brain Freeze. It’s AWESOME!!! If you’ve been following our story long enough, you might remember that Roger came to our house back in July to have a small concert for a handful of kids and we had the best time. He is a great entertainer and a great person and he made my kids’ day.

Tanner and I in our new hats

Tanner and I in our new hats

We had another visitor yesterday as well. My friend Pat dropped by with hats and chicken noodle soup… the perfect combo. She had seen this adorable pink fuzzy hat for Tanner and brought it for Tanner and a hat for me, John and Jake, too. What a nice surprise. When she left we noticed a little gift bag on the front porch that contained an envelope full of cards from a 1st grade class at Tanner’s school. There were pictures of each child on the card and Tanner loved reading them and remembering all her school friends. Then, John came home with two new wii games sent by a long-distance friend who has recently relapsed with lymphoma. Mind boggling to think they thought of us when they have so much on their own plates.

It’s a lovely world where hats, chicken noodle soup and Roger Day all show up on the same day. Help us celebrating a life worth living tomorrow.

Love,
Beth

Clinic Day #21

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I love this picture of Tanner. I think she looks so at peace with who she is.

I love this picture of Tanner. I think she looks so at peace with who she is.

November 12, 2009 Today was our fastest clinic day ever, which seemed only fair since last week was our longest! Tanner’s counts had dropped, but not terribly. Her neutraphils were down to 900 from 1,100 last Friday, which means she is neutrapenic, but is still so much better than I expected. The chemo takes 7-10 days to drop counts and we started back on the at-home IV ARA-C chemo today, so the doctor warned us that in the next couple of weeks, we should expect to see those counts go down significantly. We will administer the ARA-C at home for the next 3 days and she will continue to take the oral 6-TG until next Friday. The next two weeks, we just go in for counts and to be sure she doesn’t need a transfusion. If her neutraphils are back up to 1,000 at week 3, we will start Long Term Maintenance on Dec. 4. Unbelievable!

The doctor said we will need a couple of months of maintenance under our belts for her to be cleared to return to school. Tanner reminded him that we also couldn’t go back if flu season was bad (she really did!). So, maybe February… that would be such a gift.

After clinic, we went for shrimp scampi at Captain D’s (Have I mentioned her recent obsession with shrimp? It was pizza for a while, now shrimp and I think we might be moving on to chicken noodle soup!) and stopped by John’s office so a few co-workers/friends from out of town could come down and give her a hug. Then, we went to pick up Jake at Aunt Beth’s house. On the way home, she fell asleep in the car and stayed asleep for a while after we got home. She had a playdate with Corinne and Laurel and was tired again at bedtime. Maybe yesterday wore her out!

Anyway, it was a good day and a good clinic visit. Jake continues his cold and I continue to be terrified that Tanner will catch it. Have you ever tried to keep a two-year-old from spreading his germs? Impossible.

Thanks for all the love and support coming our way. We are carried by the love, prayers, good wishes and acts of kindness of friends and family. People never seize to amaze me. Last week, I looked out the window to find my neighbor blowing the leaves off of the front lawn. When he was finished, I went out to thank him and give him a hug. He is a cancer survivor himself and while we embraced he said simply, “I just want to do something to help.” I don’t even know what to say about this and the countless other kindnesses that have come our way. Thank you doesn’t seem like enough.

Love,
Beth

Courage

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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

Still Feeling Well

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November 9, 2009 Despite being somewhat fatigued, Tanner continues to do well under this deluge of chemo, which proves that I will never understand this whole process. Seems like the simplest thing (steroids) takes her completely out and then she does well under the heaviest treatments. She definitely does not have her normal energy level; she spends a good portion of the day sitting or lying down, but she is still able to get out and ride a bike or play briefly on a playground. She is having a little bit of nausea, but it is very controllable with zofran. We are so grateful.

Although we’re ecstatic she’s feeling so well, there is still this weird creepy feeling; we know this chemo is designed to kill everything that hasn’t been killed to date, so her counts are most certainly plummeting, despite her feeling pretty well. These are dangerous times as she will be very susceptible to infection. We are holding our breath to see if we can make it though the remainder of DI (Delayed Intensification) without another hospital stay or a life-threatening infection.

I’ve been administering a daily IV chemo called ARA-C to Tanner and she is taking a daily oral chemo (TG) as well. Tomorrow is her last dose of the IV chemo until Thursday, when we will go to clinic. There, they will check her counts and give her another dose of ARA-C. Then we will administer a dose-a-day for three days afterwards. She will finish taking the TG oral chemo in 10 more days and then that is the end of chemo for this phase. The remaining two weeks are for counts recovery as neutrapenia (neutraphils below 1000) is described by the doctor as “inevitable” during this phase. Tanner’s neutraphils on Friday were at 1100, just 100 above what they needed to be to start this last two weeks of treatment, so we expect them to be very low by the end of this week. Scary stuff, to say the least.

So, we’re laying low at the Page house. We’re really not taking her anywhere these days; just trying to make it through to long-term maintenance and, hopefully, a great increase in freedom. We’re even keeping Jake out of school when her counts are low to try to prevent him bringing anything home to her.

I didn’t realize how little actual chemo she had left in this phase until today. The chemo roadmaps they give us are sometimes a little difficult to read and I thought the chemo would last the whole next month, but the last two weeks are reserved for counts recovery so we can then begin Long-Term-Maintenance. I had a moment of disbelief… could this day we’ve been working towards since June be almost here? I want to celebrate, but would seem to be tempting fate. It’s just 10 more days of chemo, but her counts will take a little while to recover so it’s a month-long or more period where she will be very susceptible. It’s a little like a minefield and I feel the tension of making our way through with setting off a bomb.

So, we’ll do what we have done so often during this whole process… we will choke back our fear and take it one day at a time.

Maybe we should just start over and ignore everything I’ve written prior to this tonight. Here’s my new post: Today was a good day.

That’s all we need to know for now.

Love,
Beth

Happy Halloween!

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Tanner as Wednesday Addams

Tanner as Wednesday Addams

October 31, 2009 Did you hear about the parents who let their child go trick-or-treating on a cold night after just getting out of the hospital for a nine-day stay for pneumonia?!!! Oh, and she has leukemia, too!

It sounds so bad on paper, but it was really fun. If there is one thing I have learned from this whole experience it’s that you have to grab your moments when they present themselves for you never know when they will be taken from you. Apparently children know this piece of wisdom without being taught. Tanner seized the moment, for sure, tonight.

Tanner and John got home from the hospital today around 1:30 with chick-fil-a for everyone. We ate, Tanner’s stomach started to hurt from one of the antibiotics she is on, John and I spent 20 minutes trying to be sure we were administering her IV antibiotic correctly and she promptly fell asleep for several hours. That’s when the adults decided that caution would be prudent. That she might just be too tired to go out for Halloween tonight. That maybe we should do it the next night with a good night’s rest under our belt and one more day for her to recover. So, John runs all around the neighborhood asking the neighbors to save some candy for trick-or-treat on Sunday night. People were so sweet and willing to help.

Then, Tanner wakes up. No way was she trick-or-treating the night after Halloween! We warned her that the doctor said she had to wear a mask… that did not dissuade her at all. So we hustled up, ate some dinner, hurried into our costumes and met Tanner’s friend Olivia and her Mom, Jennifer, for some power trick-or-treating.

Jake, Olivia and Tanner

Jake, Olivia and Tanner

We brought the wagon because we didn’t think she would last long. She’s been in bed for 2 weeks, after all. But, as always, she surprised us with her determination. She probably made it to 15 or 20 houses before climbing the steps became too much for her and she started just stopping on the sidewalk and letting me go to the door to collect her candy. She eventually got into the wagon with a blanket around her and rode the rest of the way in great spirits.

I can just hear myself trying to explain our parenting skills to the doctors when she shows up with pneumonia again from being out in the cold (just kidding, they told us she could go). But, it was one of those moments where I realize that the stubbornness in her that has long driven me crazy as a parent is starting to serve her well. What had been just strong-willed obstinence as a toddler and preschooler is morphing into tenacity and perseverance as a kid. I was so proud of her.

IMG_1245She and Jake and Olivia had a ball. They looked so cute and got a LOT of candy. When we got home, Tanner said it had been one of her favorite Halloweens. She said, “This was a great night.”

I guess having so many things taken from you makes you really appreciate the things you get… or, in Tanner’s case, the things you reach out and grab with sheer determination and grit.

Happy Halloween!
Love,
Beth

P.S. If you see Jake, do NOT tell him he was a cute fireman. He was Billy Blaze from the Rescue Heroes, thank you very much!