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
Room at the Inn
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Category Archives: gratitude
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
Great Day
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
Kindness
Pardon my last vituperative post. Temporary negativity.
So, here’s a positive note. The kindness of strangers is amazing. Today, one of my neighbors came by to ask if a friend of theirs, Matthew West, a Christian music artist who has been following Tanner’s blog, can bring us dinner. We don’t know these people, but they are just kind and want to help.
Today, we get a package from Bob Chapek, the President of Disney Studios Home Entertainment. It contains videos, some Sleeping Beauty stuff and autographed publicity photos of the cast of Hannah Montana and High School Musical, some of which are personalized to Tanner. Seriously. (Melissa Dick, you were in Disney World last week and I strongly suspect your involvement here… a million thanks 🙂 If this doesn’t make my steroid-ravaged child smile, nothing will.
Jake’s preschool teacher has been sending Tanner letters almost every day from animals; we got one today from Keith the Cat. She doubles as a pet sitter and sends pictures of the animals and writes a letter. Tanner is intrigued. I know this takes time… taking the picture, printing it out, writing the letter, etc.
These are just a few of the things that happened today. Things like this have happened every day since we landed in the hospital.
My point is, these are extraordinary kindnesses. However big or small, they are extraordinary every one. They make this bearable for us. They buoy our spirits and make us smile. They remind us of the good things in the world when it seems a little bleak.
Tanner now has more than 300 friends on her Friends of Tanner myspace page. More than 300 people in less than two weeks… amazing. John and I find ourselves asking each other, “Do you know someone named…” and often the answer is “no.” Neither one of us know this person who has cared enough about a little girl with cancer, who they have never met, to post a word of hope. Kindness.
We are lifted, no carried by these acts of kindness. I’m hoping to be in a place to return the favor one day.
Love,
Beth
the bottomless pit
Good grief!!! You have never seen a child eat until you have seen one on high dosage steroids! It is a full-time job just keeping her fed. Two-and-a-half rice and cheese tacos, tortellini, chex mix, oranges, chex mix, two bagels with cream cheese, chex mix, etc., etc., etc. She ate cheese nips at least three different times in the middle of the night last night. She wakes up at night and talks about the food she will eat the next morning and begins planning her next meal before she even finishes the one she is eating. Food, food, food.
Each day we get further away from the chemo she gains a little energy. She still lays down most of the time and sleeps a lot, but she has more moments when she seems like herself. Unfortunately, tomorrow is her last day before chemo on Tuesday. We’ll try to make the most of it.
What I really can’t wait for is for the end of these steroids. They have robbed us of our child. She is lethargic and depressed then obstinate and agitated. She isn’t my bubbly child. She has no enthusiasm for anything. Her birthday is in two weeks. She told me today she didn’t want to have a birthday party at all… she didn’t care. I have booked her a birthday party at build-a-bear during her week break between this first stage of chemo (induction) and the next (consolidation). By the day of her party, she will have not had steroids or chemo for two weeks. I’m hoping she’ll feel really good and change her mind. Her doctor will allow us to do it during that week because typically white blood counts will rise without the chemo. Build-a-bear has graciously agreed to let us in before the store opens at 9 am so that she is not in a crowd of kids (another of the doctor’s stipulations). I want this to be special for her. I don’t want it to be yet another thing we lost to leukemia.
So, we have 14 more days of steroids and then, maybe, we’ll get her back. She’ll have to take the steroids again later, but I think for only 5 days out of the month. Pray for our patience during the next two weeks so we can get through this.
Thank you all for your continued support. We are lucky beyond description to have such friends and family.  We love you all.
Beth
Awesome News
Oh, you people must have really been praying for low numbers, because we got the results of Tanner’s bone marrow biopsy and, to everyone’s amazement, including the doctors, it shows she has less than 1% of leukemia cells left in her bone marrow after just one week of treatment! That’s my girl! So like her to be ahead of the curve. The doctor was thrilled. They had told us not to expect to get below 5%!
What does this mean? Well, she is officially in remission, which seems such a weird term since she still has years of treament left. But, the fact that she got there so quickly puts her in the “rapid responder” category which positively affects her course of treament and her prognosis. Basically, this news, plus the test results from last week that classified her as low risk mean Tanner is in the very best position you can be in if you have ALL. In the midst of all this awfulness, we feel extremely blessed for a moment.
So, no bone marrow biopsy next week… yeah! Just IV chemo, which is oddly uneventful, but deadly to Tanner. As I have said before, when she is kicking cancer’s butt, she feels like crap. So, after waking up in a great mood today with awesome energy and improved walking, she deteriorated to just plain old sick by the end of the day, once yesterday’s chemo treatments kicked in. She never did anything today but color once or twice. Even after I turned off the TV, she laid on the couch for 4 hours with no entertainment other than watching Jake play. Sad.
Speaking of Jake, he had tubes put in his ears and was home by 8:30 am (Did I mention that today was a VERY long day?). He did well. Cried a lot, and was pretty whiny and awful today, but otherwise okay. My mom came with me to the surgery and John stayed home with Tanner. My Mom and John’s Mom have been Godsends. Seriously, there is no way we could do this without them.
Again, thank you to everyone I haven’t thanked in person or by email for the cards, presents, meals, favors, etc. You know who you are and you know if I could, I would send a proper thank you note, but the kids’ needs right now are all consuming and I just can’t do it all. I surrender.
Okay, and let me give one last futile attempt at steming the flow of presents coming Tanner’s way. It is not that we do not appreciate them, but we have a whole room of them now, and she’s just too sick to appreciate them. Many are not even opened yet because I just keep hoping she’ll feel well enough to get at ’em, but when she does feel good, she just wants to be a kid and play with her brother, sprinkle water from a watering can onto the patio, blow bubbles in the yard, etc. Don’t get me wrong, I’ll be bringing all those crafts you’ve given us out over the next 7 months, I’m sure, and we’ll use them. But, rather than send us anything else, make a donation to the leukemia association and help keep someone else from ever having to go through this. Seriously.
What amazing friends and family we have. We are humbled by the outpouring of support for our family.
Love,
Beth
Almost a normal day
Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.
Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.
So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.
Love,
Beth
Today get better
I started out today in a funk, wishing Tanner felt better, wanting her to get up because the doctor and the P.T. said she should be able to, frustrated with the whole situation. I think we all learned a lot today. We upped her pain meds, which made a world of difference. She stayed awake longer, was much less whiny, sat up a lot on her own and even went outside some (around the block in a wagon, and in the back yard watching Jake play). We decided to trust her, not the doctors, when trying to determine what she is capable of doing right now and how much pain she is in. We didn’t push as much and she didn’t resist as much. We held our ground when we needed to and gave her as much control as we could over things that didn’t matter. Everything went better. In fact, we had the best medicine taking time that we’ve had in days. She actually accepted that she had to take it and was a trooper. She even opened up a little and told me she was really mad at the leukemia and mad at being sick. Amen little sister… you said a mouthful.
I think we’re finally realizing this is going to be a long, long process and there will be good days and bad days. On the good days we should make the best of them and not take them for granted. On the bad days, we’ll just hole up and sleep and cry if that makes us feel better… another good day will come.
Thank you all for the unending outpouring of support, good food, thoughtful gifts and prayers. We could not do this without you… really. And, if for some reason, we don’t remember to thank you with a personal email (I am not even going to attempt to write actual thank you notes for the many, many kindnesses, even though my Mother taught me better), please know we appreciated it mightily, but were busy kicking cancer’s butt and didn’t get it done. Please forgive us.
I’ll leave you with one sweet thought that came from the innocence of my two-year-old son. Jake adores Tanner and is so confused by her sudden disinterest in playing. Today when she was laying on the sofa, he reached down and gently rubbed her leg and then patted her really softly. He then laid his head down on her leg and smiled one of his best irresistible grins. Then, he stood up and said, “Yay! Jake made her better!”
Yeah, buddy, we’re all making her better with love.
Beth
We’re Home
Well, we’re home! Came home yesterday afternoon. Tanner was in the worst mood all morning at the hospital, but as soon as we got into the wheel chair to go home, she became her normal self again. Hugged the nurses and thanked them for taking such good care of her, played with her new iTouch in the car on the way home and had a tear-inspiring homecoming reunion with Jake. I thought, “This is going to be so much better than I thought. She’s going to be just fine.
Then, she got tired and took a nap. And woke up screaming, in pain, cranky, etc. My heart sank. The rest of the day was a battle. It’s so hard to know what to do. The physical therapist and doctor say she needs to get up and walk so she doesn’t lose her strength, but she feels so bad. Convincing a 5-year-old to do something they don’t want to do because it is for their own good is futile. So, we feel a little lost. Think I will call a friend whose child has leukemia and see how she coped. Maybe you just grit your teeth and barrel through until the end of this awful steroid course (another 25 LONG days) and hope she is more reasonable after that. She will still take steroids for 5 days a month in the next phase, but not every day like this. These steroids seem to magnify the kids’ worst traits until they act that way all the time. It’s great fun!
One good effect of the steroids is the increase in appetite, but we haven’t come to that yet. She still doesn’t seem to want to eat but one meal a day. I just can’t bear the thought of her losing any more weight. Today, we finally managed to entice her with the idea of a bagel with strawberry cream cheese from Panera. So, off John, his mom and Jake go to Panera to bring it back before she loses her appetite again. Once those steroids start making her ravenous, I’m going to let her eat like a banshee — fatten her up for the next phase.
But, still, it’s nice to be home. No one woke us in the middle of the night to take her vitals, flush her IV or stop the infusion machine from beeping. What a blessing. She was still up quite a bit with pain and nausea, but rested better for sure.
One note: we are flush with gifts for Tanner. People have been so generous. Some she just hasn’t even felt good enough to open. So, again, if you want to do something send a donation in Tanner’s honor to www.lilysgarden.com. Knowing that we might be able to help save some other family from this horror is the best gift we can get.
Love,
Beth