Category Archives: beginnings

In the Hospital

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May 1, 2011

When Tanner was diagnosed with Leukemia, I thought it was going to be the most difficult day of my life. But, at least there was a concrete plan of how best to treat her. There were numbers and statistics and protocols based on years of research. And, I knew that nothing any of us had done caused it, and nothing we could have done would have prevented it.

Today is different; and in many ways, worse. Tanner is inpatient at Vanderbilt for a psych evaluation after two tough days that led us to the decision that she needed more help than we, or a visit to Allison, could provide. I don’t want to give a lot of details, because Tanner deserves some privacy as she struggles to deal with a disease that had me reduced to a day full of tears and xanax just last week. If it is more than I can bear sometimes, I think it is not unrealistic to expect that it is more than a 7-year-old can bear sometimes, too.

We are also concerned that her antidepressants could have backfired. Anti-depressants and kids are known to be tricky and the labels on her medicine warn that it can cause suicidal thoughts in children.

She has also had a very rough couple of weeks. I didn’t write about it, again to give her some space to deal with it without others knowing, but since she told her whole class about, I figure she wouldn’t mind. She began losing her hair again last month after her chemo. We were so blindsided; we had no idea that this could happen again. John found her crying on the slide at the playground and she told him that she had known for days that it was falling out, but thought we would think she was stupid for thinking that. Turns out, it happens sometimes. It seemed like an unimaginable cruelty to have it happen so close to the end for her. Like cancer was trying to get in it’s last licks. It stopped falling out after about two weeks and, although she is noticeably thin on top, she still has her hair and it has not happened again after this round of chemo. Still, it was incredibly difficult for her… for all of us, really.

Then, we had my colossal mistake… where I thought her LP a few weeks ago was the last one… only it wasn’t. I don’t think she can really get over thinking maybe I lied to her on purpose. I know I had a rough couple of days after that one and still haven’t really forgiven myself for it, but it is what it is and I can’t do anything to change it.

Then, this week, we sent Jake to my parents for some much needed special time. It’s hard being the “other kid;” the one who doesn’t have cancer. He needed that one on one attention from his grandparents, and I needed some time alone to regroup and reorganize. Unfortunately, in meeting our needs, I think we hurt Tanner. It was very clear to me during the week that she was so sad that she can’t go to her grandparents house alone for special time, and she knows it’s because of the leukemia. Balancing everyone’s needs in this case seemed precarious at best.

Allison believes that Tanner wanted to come to the hospital and did what it took to get herself here. She believes that Tanner’s world felt very out of control and that she feels safe here as an inpatient. I wouldn’t disagree with that, but I also think we could have a medicine issue as well. There is also a plethora of documented research linking traumatic stress disorder and post-traumatic stress disorder to kids who have cancer. I think Tanner definitely could fall into this category.

The psych team will come in the morning to evaluate her and, hopefully, we’ll know more then. This is, by far, one of the most tormenting things I have ever been through. To not feel like there will be a clear plan for how to deal with her issues. To feel like something we did, or didn’t do, could have exacerbated her problems. To know that we most certainly made some mistakes that may have hurt her. It is agonizing and I wouldn’t wish it on anyone.

I know that I can count on you all not to share this information with your children, who might tell other kids at school that Tanner is having these kinds of problems. Children can be cruel, even unwittingly so, and I would die to know that this blog had caused her any more pain than she is already in. The only reason I share this information is 1) because I know people care about Tanner and want to know how she is doing, and 2) because I feel strongly that the only way to end this *&^%$ing disease is for people to know how awful it really is and be moved to give of themselves to help.

I’ll write more when I know more. We are, as usual, blessed by the wonderful people who come running to our aid when we need it, and do not need anything at this point.

Love,
Beth

A Little Freedom and Gorgeous Weather Go a Long Way

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March 8, 2010

Tanner got to go to a birthday party on Saturday for the first time since she was diagnosed with leukemia. Nine months with no birthday parties. We didn’t tell her until the last minute and she was so excited. It was a Young Chef’s Academy party so they made pasta and garlic bread and had a ball.

Tanner dressed herself for the party and came down in jeans and a jump rope-a-thon t-shirt with black high top converse. She has the girliest little face, but still… she gets her feelings hurt when someone calls her a boy, and this outfit would not help. I tried to convince her to wear a barrette in her hair, but she wouldn’t do it.

Turned out she knew all the little girls from school. But, it made me tear up a little to see how confidently she bounced into the room to great her friends. This ordeal could rob her of her self-esteem. I can easily see where I would feel a little like a freak when your parents keep following you around with hand sanitizer and telling you not to touch stuff everyone else is touching. But, Tanner’s confidence is definitely intact and I’m glad cancer hasn’t taken that away from her too. She’s still a happy, bouncy little girl that loves to play with other kids.

Saturday night we had friends over the new house for pizza in the basement. Great fun! Sunday was a gorgeous day and while John carted several loads of our belongings into the house, the kids and I had a picnic on the front lawn and rode bikes with our neighbors-to-be. We already love our cul-de-sac. There are so many kids and it feels like such a safe place for them to play.

School was out in Williamson County today and we went to a friends’ house to play outside on a beautiful 70 degree day. They had a new “zip line” and while the Moms watched from lawn chairs, 7 kids had a great time playing on the playground and just being outside. It was a welcome break from the drudgery of packing.

Tomorrow, Tanner and I will spend the day packing and taking stuff to the new house while Jake is at school. We’re in the final stretch here and I’m starting to feel a little strain. So far, though, it’s been a relatively easy move and we have no real deadline for getting our stuff out, so I’m just not going to sweat it if it all doesn’t get done before the movers arrive. Don’t get me wrong… I would rather not come back on Sunday after moving the day before to pick up the stuff we didn’t get, but we will if we have to. We have enough stress in our lives without creating imaginary deadlines.

One of my friends asked me why we would choose now, with all that has gone on with our family this year, to take on something stressful like renovating a house and moving. She said she thought it would put her over the edge. The funny thing is, it has been exactly the opposite. It has been a blessing. It has given us something else to focus on, something to look forward to and offered us a safe place to go when we couldn’t get out because of low counts. It’s a little like an adventure to go “camp” at the new house for a meal… pure gold when you haven’t been to a restaurant in a while.

But, mostly, we haven’t found it to be very stressful at all. Our experience with cancer has changed our idea of what stressful is. Stress is thinking your child might die, watching them in pain, feeling like they are a sick all the time, disappointing them over and over again, even if it is for their own good, feeling like your child is being robbed of her childhood. These things are stressful. A messed up hardwood floor can be fixed, a wrong tile choice in the bathroom can be covered with a throw rug, a missed deadline can be rescheduled.

Four more days until we move. It’ll all get done somehow. Meanwhile, we’ll enjoy whatever freedom we can get.

Love,
Beth

Twinkle Toes

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Tanner dressed for a recital 2 weeks before diagnosis

Tanner dressed for a recital 2 weeks before diagnosis

July 14, 2009 Tanner had a private dance lesson today… for an hour! Her very sweet dance teachers took time after their workout to teach Tanner and her friend Corinne. They had a ball and I was amazed at how well Tanner held up. Only by looking at some really subtle things could you tell anything is wrong with her. Like the fact that she can’t skip (although she tried) or leap, or spin quickly. But, she kept up with all the moves they taught her and the ballet stretches and positions, and never knew she was getting some of the best physical and mental therapy. Thank you so much to Morgan, Rachel and Elisha at Histown Dance Studio (histown.com) for caring so much about my daughter.

Tanner’s been taking dance for about a year-and-a-half, both hip hop and ballet. The lesson today stirred up a memory that haunts me. Two weeks to the day before Tanner was diagnosed with leukemia, I took her to our pediatrician because her back was hurting. She had been complaining about it on and off for several days and had even woken up in the night once, crying, saying her back and leg hurt. The pediatrician, and I, agreed that she must have strained a muscle. She had been unusually active (which is saying something) for several days before that with two dance recital rehearsals, the recital itself, field day and the kindergarten rodeo. Anyone could easily strain a muscle with all that going on. We gave her ibuprofen for a few days and it went away.

It came back on June 28th at 9 pm, just an hour-and-a-half after Tanner went to bed. This time, it made her scream and curl up in a ball and writhe in pain if you touched her. It was leukemia and it had been stalking my child for at least two weeks.

So, I’m haunted by the pictures I have of her at that recital. She looks like any other 5-year-old, happy to be in a cute costume and excited to show off her moves at the big show. But, I keep looking at those photos. I zoom in on them sometimes, trying to see if there were dark circles under her eyes. Is that a bruise I see on her leg? Tanner has always been very thin, but her legs look super thin and long in those knee socks. Too thin? Her face looks really pale, especially for the middle of May when we have playing outside so much in the beautiful spring weather. Almost ashen.

Then I compare them to the photos from her December recital before the bactrim reaction sent us to the hospital for 5 days in March and before the leukemia. She looks so healthy and beautiful. Why didn’t I notice how pale she was later?

Tanner at a Dec. 08 recital

Tanner at a Dec. 08 recital

Then, I remember my Mom telling me on a visit that she thought Tanner looked tired because she had dark circles under her eyes. When was that? I can't remember. Tanner has chronic ear infection problems, so I thought they were the "allergy shiners" kids with sinus and allergy problems are prone to.

The point is, I am haunted by the fact that the leukemia was already there in those photos of the spring recital. It was lurking there conducting its evil business and no one knew. My beautiful, happy, dancing, twirling daughter was being stalked by a killer and we didn't know.

Not that it really would have changed anything; I just don't like it. It mars some happy memories for me. Those pictures will never just look like harmless pictures of a little girl going to a dance recital; to me, they look menacing.

It's just another of the many things this disease has take from us– our freedom to go places and do things, the house of our dreams that both the kids and John and I were so excited to move into, our peace of mind in believing that nothing really bad will happen to our kids. I am sure that one day it will give us something back (besides our daughter). I'm sure we'll get something out of this — strength, courage, new friends, a closer-knit family — but there are days that are tough to remember that, or believe it even.

This was one of them.

Love,
Beth

We made it!

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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

Baby Steps

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Most of you probably know that Tanner was in the hospital two months ago for a life threatening reaction to Bactrim and, possibly, ehrlichiosis which is a tick-borne illness. She had to be lifeflighted on a Monday night and was gravely ill for several days before being released on Friday afternoon with a course of antibiotics to finish as our only reminder of our time there. Tanner was sad and depressed in the hospital (it doesn’t suit her bubbly nature) and didn’t even want to get out of bed until I made her. But, as soon as we left the hospital, she came alive and never looked back. The next morning, she was playing Wii with friends, refusing to take a nap, and demonstrating jump rope moves for her brother. By Monday, she was back at school with no indication that anything had ever been wrong. Not bad for someone who was on a helicopter with a 50/50 chance just a week earlier.

That is my kind of illness… quick and dirty, with immediate results. I’m not really cut out for stuff that lingers. I like the kind of job where you work harder than everyone else and you see the best results immediately. I could never be a farmer… heck, I can’t even keep the plants the kids give me for mother’s day alive for more than a couple of weeks. All that watering, day in and day out… you get the picture.

So, when Tanner left the hospital after her leukemia diagnosis, I guess in the back of my mind, I thought things would get better… that she would bounce back the way she did before. Not that I was so stupid as to believe she was going to lick leukemia in a few weeks, but I guess I expected there to be some kind of forward motion to her recovery.

There is no forward motion. Only back and forth, up and down, side to side. Anything but consistent forward progress. Cancer has to be one of the only diseases for which the treatment is as bad or worse than the disease itself. The cure that almost kills you, as I like to say.

So, here’s how a typical day goes: Tanner wakes up crying this morning (as she does every morning since taking the steroids), after pain medicine, she feels a little better, eats voluminously and watches TV. She knows that eating too much will hurt her stomach, but its like the pull of the steroids outweighs common sense and she overeats, resulting in an ugly tummy ache. I give her something to help her tummy and then she plays on her computer for a while and helps Jake play on mine. Then, we go upstairs where she lays on the floor and talks to Jake while he plays. When we decide to go downstairs again, she begs for my help getting up off the floor. Even though I want to help, I know she needs to use those muscles and encourage her to do it on her own. This causes a giant temper tantrum (steroids, lack of sleep) that causes me to have to send her to her room where she promptly falls asleep for 2 1/2 hours. After she wakes, we eat more, of course, and go across the street to her friend Corinne’s house. I haven’t told Tanner about this because I know she won’t want to go… it makes her so anxious. As I expect, she balks at going and we arrive with her crying. Poor Corinne looks alarmed, but sweetly asks what’s wrong and invites Tanner to sit on a little couch in the playroom. Within minutes, they are looking at my new iphone and comparing games. They spend the next hour happily drawing and talking together on the sofa. I have to pry her off to go home. The trip home seems like miles. Her legs buckle on the stairs out of the house and she falls onto her bottom. It goes downhill from there. The heat beats her and she is exhausted when we get home. We regroup and have a much-anticipated visit from Lily, an 8-year-old little girl from Franklin who also has pre-b cell ALL and is about 7 months into treatment. It is their first meeting and we were excited to see her. But, the horrible stomach ache returns and Tanner can’t really enjoy the visit the way she wants to. Her stomach gets worse and worse and she can’t eat the McDonalds she wanted so badly all day long. We finally manage to get the right medicine to ease her pain just in time for bedtime.

So, it’s not just one day up and one day down, it’s 15 minutes up and 15 minutes down. You never know when a symptom will creep up and rob her of her personality temporarily. And, even though I know the tests show she’s kicking leukemia’s ass mightily, I don’t see it. I just see a little girl who can be giggling and cutting up one minute and groaning in pain the next.

So, I’m learning to take baby steps. To not expect it to get progressively better each day, but to have faith that it will get better… eventually. I guess I’m going to have to learn how to water a plant every day no matter how slowly it seems to be growing.

Love,
Beth

Great Day

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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

Today get better

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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

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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

Going Home?

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Unbelievably, we may be going home Saturday!!! Hurray! She is doing so well they see no reason to keep her. We will have to return Tuesday for a spinal tap and chemo injection into the spinal fluid, a bone marrow biopsy and her IV chemo (sounds like a day of fun, huh), but we can be at home until then. This will be so good for all of us. Tanner is a social butterfly, as you know, and does not do well in the hospital. She is depressed and the steroids are exacerbating that so she is insufferable right now. Getting home, being around Jake-the-miracle-cure, and not being hooked to that annoying IV pole will do wonders for her. So, please don’t send any gifts to the hospital — we probably won’t be there. And, please let us figure out what she is going to be capable of before you come visit. Call first, because she may not be able to see anyone. We’ll get some guidelines at the hospital tomorrow and just see how she adjusts.

I can’t wait to get her home and for us all not to be living in that “sick” environment, and to be able to see Jake — he’s been such a trooper being transferred from friend to Grandmother to other Grandmother.

Keep your fingers crossed nothing changes to keep us from going home.

Beth

Tanner update 6/2

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Dear Friends:

tanner-curls-with-backpackSo much has happened in the past two very long days.  Let me start by saying thank you to all of you for your prayers, your loving messages, your extraordinary kindnesses and thoughtfulness towards our family in this terrible time for us.  Your emails keep John and I going through the day; we feel wrapped in love at a time when we need it most.

Yesterday was another exhausting day, but Tanner’s surgery to insert the chemo port and her spinal tap went well.  Her spinal fluid showed no leukemia cells, thankfully, but they inject chemo into her spinal fluid either way, though to prevent any cells from forming there.  This &^%^$#!! disease is so hideous that it actually hides in your spinal column since it knows that the chemo injected into her bloostream doesn’t work there.  Your body protects your brain and spinal column so thoroughly, that unless they inject the chemo directly into the spine, the leukemia can hide there and come out later to begin it’s path of destruction once again.  Unbelievable.

Tanner handled yesterday beautifully, and mercifully, emerged from her surgery a new girl.  One of the medicines they have given her to help with the pain finally kicked in after building up in her system for a few days and has made it possible for her to be much more comfortable while still and less tender when moving, although moving is still extremely painful.  That very morning, she was either completely doped up on morphine or she was panting from the excrutiating pain of just lying in her bed; it was heartbreaking.  So, we are so grateful she is a little more comfortable and some of her personality has come back.  She tires easily, though and sleeps often.

Today was the day that Tanner Page, age 5 and three quarters, had to accept that she has cancer.  The endless march of medication, the length of time she will be in the hospital, and, most devestating to her, the fact that she will lose her hair.  She ended the day by refusing to take medication (in only a way that Tanner could refuse!) and then realizing it made no difference whether she refused or not.  Before she went to sleep, she looked up at me with tears streaming down her cheeks and said, “I hate this place and I hate Leukemia.”  Amen to that.

She also had first dose of chemo today, which is oddly anticlimactic.  They just shoot it into the IV line that runs into her port (which feeds directly into the blood vessels leading to her heart) and that’s that.  I didn’t notice any real side effects today except that her food seemed to not taste good to her.

John and I spent the morning trying to digest the treatment plan, which is just so unimaginable.  It seemed like they discussed about a hundred drugs with us, to be administered in every way possible.  We will have honorary medical degrees before this is through.

So, enough said about the awful stuff… here was the good stuff:  my child, head pealed back in hysterical laughter as she snatched the hair off a puppet named Slater to reveal his leukemia inspired bald head; the immeasurable kindess of our friends who are doing things for us we didn’t even realize we needed; a darling little 8-year old named Lily who is friends with one of Tanner’s friends is 7 months into Leukemia treatment and wrote Tanner a note in crayon telling her that chemo is hard but she knows that Tanner can do it; my son saying to me as I left the house (again) this morning, “Mommy come back?” and then running off happily to play with a friend; and the doctors and nurses at this amazing hospital where they have thought of anything and everything a family could ever need and who treat our daughter like she is their own, even though they see this stuff every day.

Forgive me for the length of this post.  It’s ridiculously long, but helps me process this thing that has hit my family and turned our lives upside down.  A good friend has created a blog so that I can keep this up and disseminate information more easily.  You can reach it at http://www.tanner.celiamusic.net.  It will probably post tomorrow.  Thanks, Ron. [editorial: You’re welcome, glad I can do something helpful, — Ron]

One last thing — people keep asking how they can help… right now we have everything we need, but if you want to help us find a way to end this horrible disease, there is one thing you can do.  The little girl I mentioned above has a website, lilysgarden.org, where you can donate money to research for children’s cancer.  Any donations made in Tanner’s honor would be amazing.

Time for bed.
Love,
Beth