Discharged this afternoon. Tanner feeling better. Happy to be home. Thanks for all the good thoughts and prayers. Too tired to write anything else.
Beth
Home again, home again, jiggity-jig
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Hospital Update
Tanner’s fever is down this morning after 2 IV antibiotics. Her leg pain has also lessened, thank God. Her blood cell counts still look good today, so I think we’re going to get to go home. We just have to find an attending who can make that official. The hospital is packed and it’s a holiday, so we may not even see the attending until this afternoon.
She’s on contact precautions right now. It’s so funny, because here I sit with my cold that has brought all this on, but every medical person that comes in here gowns up and wears gloves. So strange. Definitely don’t plan on coming by to see us unannounced; we can’t have visitors at the moment.
Good grief! When else does a 100.7 degree fever send you to the hospital overnight? Will keep you posted.
Love,
Beth
Room at the Inn
Somebody must have been praying, because we got a room!!! And some morphine!!!!!!! Both things have us resting comfortably now. Just settled in at 1 am. We’ll let you know what’s going on as soon as we have any news.
Beth
In the Hospital… again
Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.
I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.
The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.
Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.
Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.
Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.
Will update in the morning.
Beth
More Great News!
In the words of Tanner’s doctor she is now among the “lowest risk” of all leukemias. The results of the detailed bone marrow study from yesterday confirm that there is no leukemia left in Tanner’s bone marrow. TAKE THAT CANCER!!! This isn’t some cupcake you’re dealing with here… this is Tanner Page. I mean, have you ever seen this child throw a tantrum? If you had, you would have never chosen her as an incubator for your vile, evil lazy leukemia cells. You would have recognized that you have met your match! Just move on, give up and DON’T BOTHER TO COME BACK!!! This is how we roll at the Page house and you are NOT up to it… I promise!
So many things to be thankful for this week. Our last day of steroids for a while, the end of the first phase of treatment, Induction, and now this. Just two days with no steroids and I can already see a difference in Tanner. She is still eating like a maniac, but she was definitely more lively and sassy today and her stomach pain seems to be lessening. Hoping she sleeps better tonight.
Thanks to all our friends who came by today, we had a great day. Tanner had visits from Gracie, Leah and Zach and Grandmom came today, too. Big day with lots of fun. Thanks to Leah for teaching Tanner how to “finger weave.” She sat on the sofa all afternoon weaving a very long rope. It made me happy to see her sitting up for that long instead of lying down.
Tonight as we were going to bed, I tried to tell Tanner how proud I am of her. I just hope it sinks in because usually she looks like she’s just embarrassed when I say stuff like that. I tried to explain “grace” to her, which is very difficult, I found out, to explain in terms that a five-year-old can understand. I finally resorted to referencing a Disney movie “Princess Protection Program” to explain the concept. I think she understood. I told her that I was particularly impressed by how she was handling losing her hair, which has been falling out for the last week or so. She looked shocked and said, “My hair isn’t falling out!” Oh no, I thought, she’s in denial now. Then, she exploded into peals of laughter and shrieked, “I’m going to glue it back on! No, I’ll finger weave it to my head!!!” We laughed hysterically and I reminded myself how lucky I am to have gotten such a kid. I’m glad to see her sense of humor returning to her. Goodbye steroids… for now.
Thanks again for everything people are doing for us. We are humbled every day by the outpouring of support our child has inspired. She is awesome and we know it, but to see many others recognize it and lift her up and help carry her through this awful mess is so touching. We are blessed by those who love our daughter and care about her plight in this way. All we can do to repay this kindness is to pay it forward. To hope that our story will help inspire people to demand that no other family ever have to live through this again. To donate, to give time and energy and to raise awareness for childhood cancer.
Love,
Beth
We made it!
We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.
We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.
We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.
Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.
We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.
All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.
One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.
Love,
Beth
One more day
The last day of steroids tomorrow!!! I know we’re making a huge deal of this, but you just can’t imagine how horrible the side effects are getting. She is so exhausted from not sleeping and if her face and stomach swell any more, she will pop. Not to mention the constant stomach pain. At first, the mood swings seemed like a real pain, but now they just seem like a minor annoyance compared with the rest. I’m not sure how long the steroids will take to get out of her system, but we are all looking forward to a good night’s sleep, I can tell you that. Hopefully, by the end of the week.
I keep meaning to point out that Ron added a new link to this page. It’s to a book called Chemo to the Rescue. If you are the parent of a friend of Tanner’s, I would encourage you to read this book to them so they can better understand what is happening to Tanner and what to expect when they see her again. You can read the book online for free. It is Tanner’s favorite book now. It was written by an 8 year old girl and her mom after she finished treatment for ALL. They wanted kids to know that chemo is really a good thing and to understand what was happening to them. It is very positive, but honest. I think Tanner likes it because she knows it doesn’t sugarcoat leukemia with any pretty analogies and it is written to empower kids. We read it all the time and today, Tanner, John, Jake and I all chanted and drummed to the “rap” that is written in it about chemo. It was hilarious. She made up hand motions to certain parts of the book and had Jake doing it with her. They were pretending to put magic EMLA (numbing) cream on their ports and then stick themselves with an IV line. Bizarre fun.
I’m going right now to put together Tanner’s nighttime “snackpack.” It’s a big tupperware tub that we fill with snacks so she can nosh all night at will. She has requested Cheese Nips, Sunchips and Pretzel sticks.
Here’s hoping you sleep because I know I won’t 🙂
Love,
Beth
2 days and counting!
Great news! One less day of steroids than we thought, so tomorrow is our last day!!! You have no idea what this will mean to us. Tanner is really not sleeping at all at night anymore. Maybe 1 hour at a time, which means everyone at the Page house is very tired, including her. She is able to nap some during the day, but not for long periods of time, so I think she is chronically tired. Add to that the strain of the incredible amount of water retention this has caused, the stomach cramps and mood swings and we are ready, ready, ready for these to go! Believe it or not, my skinny little Tanner has huge cheeks, like she has mumps, and has a giant, distended belly. Those of you who have been pregnant before can attest to the fact that this is not a comfortable predicament.
Tuesday also marks the last day of Induction, our first phase of treatment. It is a milestone, but also a hard day at clinic. A bone marrow biopsy, spinal tap with chemo injection into the spinal fluid, and an injection of vincristine (another chemo drug) into her port. She’ll be sedated for all of this, which is good, but means she can’t eat past midnight the night before… uh-oh. You do NOT want to be at our house tomorrow night.
Had a great day yesterday. We continue to be able to creep more normalcy into our lives. Tanner invited her friend over for a slumbover. That’s where you do all the stuff for a sleepover — pajamas, bath, dinner, playing and watching a movie — but then go home when it is bedtime. Tanner lasted for about and hour and a half, but that hour and a half was so normal. They played upstairs in the playroom on the Smartcycle (thanks Will!), dressed in identical nightgowns, ate tacos and watched “Princess Protection Program.” It seemed just like it always was and John and I were grateful to see Tanner interested in playing. Hopefully, when the steroids wear off, we’ll see even more interest in normal things.
We continue to be really worried about Tanner’s legs, especially her right leg. She has started falling some; that right legs just buckles beneath her. We’re going to push for physical therapy this week.
John and I had some normalcy this week as well. I went our with my good friend Celia for a movie Friday night. Just some good girl time. And, Aunt Kim came over last night so John and I could go out for a walk together by ourselves. Got home early so we could get in bed. It was John’s night to stay with Tanner and she didn’t sleep much. My turn tonight…
Count down the last two days of steroids with us. Just 3 more doses! Yay!
Love,
Beth
What’s this
Since we have been home from the hospital, we have been worried about Tanner’s walking. First, the fact that it is nearly limited to walking to and from the bathroom, and second, that it hurts and seems difficult for her. We worried that she had some weakness, perhaps caused by the chemo or the steroids. While her walking has gotten steadily better, it is still slow and limited. She has stopped using the cane and doesn’t need to hold our hand anymore. This is all good. She still labors up stairs, but seemed to even be getting better at that. The doctor basically said, “Use it or lose it” so we’ve been forcing the issue and she’s really been trying. Then, yesterday, she started complaining that the back of her right calf hurt when she walked. I stretched it, massaged it, but to no avail. She began dragging it along the ground because it hurt less than picking it up and walking. Two steps forward and one step back, I guess.
Last night, during one of her many nightly eating binges, she said she was so disappointed because she was going to show E. (John’s Mom) today how well she could walk with her cane, but now her leg hurt to much. Still, when she saw how tired i was on our 3rd trip to the bathroom for the night and, consequently, her 3rd eating binge, she told me she would go to the bathroom by herself so I could sleep. She said I should never take her to the bathroom at night again because I was grumpy at night (mind you, this was 2 am). So, for the rest of the night, she dragged her little leg behind her to the bathroom… sweet thing.
This morning, it is no better and her tummy started hurting again (could it have something to do with the two bagels and taco she ate for breakfast?). We marked another day on our steroid calendar (5 1/2 more days). She actually had a pretty good day yesterday, considering she had chemo the day before. When these stomach cramps from the steroids go away, I think she will feel so much better.
Five and a half more days… count it down with us!
Beth, Tanner, John and Jake
The other one
The first thing Jake said when he woke up this morning is, “Where’s Tanner? She feel better?” It’s one of the first things out his mouth every morning for the past three weeks. Even before she came home from the hospital, he would ask me when I came home, “Tanner come home, too? She feel better?”
When they are sitting on the couch together, he pats or rubs her leg and sometimes will repeatedly ask, to her annoyance, “Tanner, you all right? You feel better?” He helps me put lotion on her feet where they are cracking and peeling. He is interminably sweet.
But, I can’t help but think that a 2-year-old shouldn’t have to wake up in the morning worried about anyone. I keep telling myself it is a blessing that he is so small and that he won’t remember much of this, but then I realize that 2 1/2 to 3 years is a long enough time, that whether he remembers it or not, it will shape him. What will that look like?
Will he be the other child? The one people forget to ask about or I forget to tell about because he doesn’t have cancer.
The truth is, we all have cancer. Me, John, Jake, and of course most of all, Tanner. But, as it eats at Tanner’s body, it eats at each of us in different ways. A two-year-old that worries about his sister and knows that she can’t play like she used to. A mother and father who now know that anything can happen to your kids… nothing is out of the realm of possibility. A family that used to go, go, go and now is having to learn to find joy in quiet moments at home.
It kills me to turn away from Tanner sometimes when I know she is feeling bad and wants her mama, but I have two children and her needs cannot overshadow Jake’s every time. Jake has a cold today and was a little whiny and fussy. He needed his mama, too. And, although a little discomfort from a cold cannot really compare to the pain that Tanner is in, the need behind both is really the same. And, even when he’s not feeling bad, he still has needs — to play, to read a book, to cuddle, to ride a bike or run in crazy circles around the house. It’s gutwrenching, really, to decide that those needs are as important as Tanner’s need for her mommy when she is hurting and uncertain.
In the end, I can only do my best and hope that she will learn independence and fortitude in the face of adversity, and that he will always stay as sweet and nurturing as he is now. And, that he will know he is loved just as much, even though he didn’t always get the attention he might have otherwise had.
I can’t wait until the day I can tell him, “Yes, Jake, Tanner feels better. We’re all alright now.”
Love,
Beth