Category Archives: Beth Page

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

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth

Calling Nurse Page…

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November 2, 2009 When John and Tanner came home from the hospital Saturday, they had a lot of stuff with them. We had been in the hospital 9 days and had accumulated a lot of things that John kept unloading from the car and bringing into the house. After 3 or 4 trips, he brought in two big cardboard boxes and set them on the kitchen table.

“What the heck is that?” I said, expecting it to be a gift of some kind for Tanner. He opened them up to show me all medical supplies necessary to administer the IV antibiotics to Tanner for the next four days. Yikes! John laughed and said, “I say we just take her back to the hospital and say we made a mistake… we want to stay.”

Ironically, that was an option. We could either stay four more days or learn how to administer the antibiotics. Seemed like a no-brainer to me until I saw those boxes. Fortunately, John had taken a video of the pharmacists’ explanation of how to use the supplies and I had asked the nurse to show me how to flush her line while we were at the hospital. There were also written instructions. How hard could it be?

It isn’t actually all that hard, just kind of unnerving considering the reason she is getting the IV antibiotics in the first place is because she had some staph bacteria in her line. So, slightly nervous, John and I glove up, read the directions through several times and go at it. It went really well, I thought, until I came back ½ hour later and no antibiotic had drained from the ball. That’s when I realized I hadn’t unclamped the line to the antibiotic… oops!

Since then, I’ve become a pro, even by flashlight at 2 am. I’m pretty fast and quite confident now, which is good, because I have to do it four times a day. I’ll have flushed her line 32 times, hooked up the antibiotic and administered heparin 16 times by the end. I sterilize the cap on her line, flush with saline, bleed the air from the antibiotic line, hook them together and unclamp everything to begin the drip. Then, I reset my alarm for an hour later, wake up, unhook her, flush and administer heparin to keep her line from clotting.

It’s an amazing contraption that allows us to deliver IV antibiotics at home pretty simply. No pole, no infusion machine… just a little balloon filled with liquid antibiotic that, once screwed into her line and unclamped, drips out of the balloon and down the line into her port much like a water balloon would drip out if you put a pinhole in it. So clever. She even has a little fanny pack she can put it so she can carry it with her if she wants to get up and play.

So, it’s been going very smoothly… until this morning when the needle came half out of Tanner’s port. John woke me up and I could hear Tanner crying and yelling. Nothing to do but pull it out the rest of the way and go to the clinic to have it accessed again. Tanner and I took Jake, which was fun because she got to show him the ropes and he got to meet the ever-famous Nurse Cari.

One of the nice things about this whole thing is that I get to do something for John. The whole thing makes him a bit squeamish. It’s not just the fact that you have to draw back blood to make sure the port is working, I think it’s also the thought that he might hurt her if he makes a mistake. At any rate, it makes him uncomfortable and I just told him not to worry about it; I didn’t want him to have to do it. So the miracle is that he has let me do this for him; he doesn’t often stop helping me enough to let me help him. I’m glad.

So, two more days of IV antibiotics, then a long day of lots of chemo on Friday that begins five days of IV chemo administered at home. We’re ready.

Love,
Beth

The Freaky World of Cancer

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mommy in maskOctober 19, 2009 Yes, it’s me in the mask. Fuzzy picture taken by Tanner, from whom I am trying to keep my throat infection germs. I tested negative for strep, but have some kind of throat thing and the doctor mercifully gave me antibiotics to try to make it go away fast before I give it to Tanner. Hence, the mask. Attractive, no?

The last two infections I have had, Tanner has also picked up. Whether we got it together or she caught it from me I don’t know, but I do know I need to stay away from her until these antibiotics have a chance to work.

As usual, my best friend, Beth, rescued me. She stayed with the kids for many hours today while I tried three different clinics and two different pharmacies to get what I needed. I literally don’t know what I would do without her. My Mom and John’s Mom are lifesavers and so willing to help, but they live 2 and 3 hours away. Beth is always there when I need her. She is family, and my kids couldn’t be any more her niece and nephew if we were related by blood.

Which brings to my point of this post, which is to acknowledge that, in order to survive something like this, you have to let go of your independence and your assertion that you can handle things without any help from anyone else. You can’t… trust me. You need help, and plenty of it. It takes a village to see a child through cancer, especially the kind that lasts 2 ½ years. I know I may not always accept help as gracefully as I should, but please know that it doesn’t mean I don’t appreciate it. I do… believe me. I just don’t want to need it. I think it is part of my desire to have a normal life where I didn’t need people to take care of my kids for days at a time, cook me meals, fold my laundry, etc. I want to do it all myself, but thank God for those of you who realize I can’t and do it anyway. I love you… really.

Tanner is still feeling pretty rotten. Every day she takes the steroids, she retreats a little further into herself and gets a little more limp. She lies on the sofa and watches TV or plays on her computer. If you turn off the TV, she will just lie there and stare into space or doze off. She asked John to take her to bed at 6:30 tonight, but will have trouble sleeping. Last night, she woke up 3 or 4 times, once at 3 am for some “cheesy snacks!” Thank goodness we have the prior experience with the steroids and know this is normal and will go away within several days of stopping. She only has two more days of the steroids, so I think she’ll start coming out of it Friday or Saturday. Then, she is done with steroids until she starts long-term maintenance in a month or so. But, they are a very important part of leukemia treatment and she will take them the first five days of every month for the remaining year-and-a-half of maintenance.

So, we’ll just keep renting movies and letting her lay on the sofa until they start wearing off.

I’m off to bed, hoping the antibiotics will work their magic overnight and I will feel better tomorrow.

Love,
Beth

Clinic Day #17

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October 7, 2009

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

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

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

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

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

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

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

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

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

Love,
Beth

Coming Home!

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October 7, 2009

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

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

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

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

Nuff said.

Beth

Hospital Update

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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

To My Wife On Her Birthday!

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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!