Bailey Update

Bailey has been quite the trooper in recent weeks. Her life has been turned upside down and nothing looks like it did. She breaks down and has hard days, but she somehow always manages to pull it together and march forward. She has had three rounds of chemo. The first couple were completely dreadful. It takes a while to figure out the nausea medications and it was awful. She was so sick and miserable and there was nothing that seemed to help her. We felt helpless and it was horrible to watch. The Methotrexate has seemed easier for her to deal with. This weekend is the Doxorubicin and Cisplatin which were so difficult the first week. The Cisplat is brutal, so we are hoping that we can come up with the right meds this time around. She is battling terrible mouth sores from the Methotrexate and that has been her biggest complaint lately, as she is in significant pain and eating has become difficult. By last weekend, we seemed to have figured out what works for at least one batch of the chemo drugs...and she actually had a decent weekend in the hospital...was eating well, sleeping well and the sickness was kept to a minimum. But the schedule has been grueling and she is coming up on her third weekend in a row spent at the hospital.

While we would rather not know any of these people, the group at the AFLAC Cancer Center at Scottish Rite has been amazing. We love Dr. George and Alisha, Karen in Child Life and our favorite nurses Sara and Andi...the team there is awesome and very good at what they do. If you have to spend a lot of time at the hospital, they are the people you want to hang with...a totally fabulous bunch.

We are busy now, prayerfully considering surgical decisions. Bailey will be having surgery in early June, and as I've mentioned in previous posts...the tumor must come out. We have done hours of our own research. We have met with surgeons. We have met with a physical therapist. We have either spoken with or met families who have been through this and chosen varying options for their children. We have even talked to the kids who have been through it and Bailey has met a few of them. None of the choices are easy or actually even desirable. There also isn't a way to say that one option or the other is better for all children. It depends on the child's age, amount of growth potential left (height), personality and desired activity level post-surgery...as well as a number of other factors...none of which are easily quantifiable. We are definitely leaning in one direction at this point (all three of us), but this is certainly not the type of decision we ever dreamed of making for our child. Bailey is also actively involved in this choice...as she is the one who will have to live with it. 

Overall, I would say that Bailey - all of us - are doing as well as can be expected. We have seen God's hand in this. We are attempting to live in the day. To cherish small blessings. We are trying to research and do our due diligence, without becoming so obsessed that we are sucked into the black hole of despair that comes from too much time spent on the Internet. We have good days and bad days. Actually, good hours and bad hours. This is not an easy way to live...to keep up with life. Some days we are drowning. Other days we can see glimpses of normal. On all days, we are exhausted. He loves us. He is in control. Some days I hear Him whisper. Some days I am angry. Other days, I cannot hear Him and I simply chose to trust because I know He loves us. It is beyond difficult...a struggle like we have never known...to fight cancer. Faith-testing. All-consuming.

Please continue to pray specifically and fervently. We do feel covered and we have flashes of peace about things that we know can only come from God holding us. We are grateful to have such a body of believers, walking with us...carrying us even, doing what we cannot do for ourselves. The journey will be long...we will need each of you...praying, loving, serving. We are so thankful to have so many amazing people in our lives. This is not a road we would have chosen, but this is the path that He has for us. We are not sure why - we may never be. When we cling to Him, it seems alright. When we lose sight, it is terrifying. Thank you for walking with us.

(If you are friends or family and would like Bailey's website info, please just send me an e-mail and I will get that to you.)

Osteosarcoma - Surgical Options

We have come a long way fighting cancer in this country. Survival rates are better, options are better, hope is greater...for many cancers...although not for all. But if you honestly evaluate the situation, while hope exists where it may not have before...fighting the disease is usually about navigating through a long list of scary choices...none of which really feel like choices you would want to make. It becomes about beating the beast, whatever it takes. But many times, what is takes, while it leaves you with a life...and that is a huge blessing...that life is almost always one that looks very different than the life you had before cancer.

Osteosarcoma is no different. While the options, plan of attack, and instances of survival have grown tremendously...the choices are still less than ideal and sometimes seem to border on insanity. It feels particularly difficult because this disease effects a number of children...and is this really the life we want to give back to these kids? After they've already endured the horrors of chemotherapy, of missing out on their life for months? There is much to be done in the area of fund-raising and research because while it is significantly better than it was 30 years ago, it seems to me as a mother of a child with this disease...that there is still a long way to go. (I thought our family's cause was going to be adoption...but I feel a new fire that might be growing in my soul...we shall see where God leads us...).

The current protocol for osteosarcoma currently is 10 weeks of chemotherapy, then surgery to remove the tumor and then 6 months or more of additional chemotherapy based on tumor necrosis at the time of surgery. The chemo prior to surgery is done to kill as much of the tumor as possible in an effort to minimize the risk that live cancer cells may break off and spread to other parts of the body during surgery. There can also be a small amount of tumor retraction once the cells die. The chemo after the surgery is done because there may be mets that are not visible and so every effort must be made to rid the body of any cancer cells that may not have shown up on scans. The chemotherapy has proved hugely beneficial to the survival of patients with osteosarcoma, as it is a cancer that can respond well to these types of drugs, but that is only one part of the puzzle.

As I mentioned above, a surgery piece must also be included. For the best chance at a long and healthy life, these tumors must come out. Period. There is no way around it. To remove a tumor from a bone is dependent on a number of things. How large is the tumor? Where is the tumor located? Are there joints involved? Is there soft tissue involvement? What must be done for clear margins to be achieved? Is the patient fully grown or is there much growth potential left? What is the desired activity level of the patient once the cancer is gone? This certainly isn't an exhaustive list, but these are just some of the things that must be considered. For now, we will keep Bailey's specifics out of it, and just stick to generalities. I will post more about where we are headed in the weeks to come. The surgical options are difficult. People keep asking us if we are getting additional opinions and we are, but I assure you, that these are standard. I am grateful that we have choices, but as a mother, it is difficult to look at your child and present these options. This is the ugly truth of osteosarcoma:

1) Amputation - 30 years ago, this was the only option and with no chemo, most died anyway. Fortunately, we live now and not then, and the chemo provides a much better opportunity for success. With amputation, you simply go to where there is a clear margin, and amputate there...based on where the tumor is. A number of osteosarcomas occur near the knee...so many times an amputation would be an above the knee amputation.

Pros - you can achieve very good mobility with a high-tech prosthesis, high functionality with minimal limitations

Cons - depends on location of the amputation, below the knee is much better functioning than above the knee, loss of normal weight bearing structure can cause other orthopedic issues (i.e. the thigh is not meant to bear weight, so hip problems can result, spurs, etc.), phantom pains can a serious and life-long issue requiring pain meds, etc.

2) Limb-Salvage - Touted as one of the great developments of recent years, although based on function alone - this point could be debated. Depending on the tumor, the area is removed to give safe margins and the missing bone is replaced...with a graft if the area is small (very unusual to have just a graft alone, areas are usually too large and it would be unstable) or with an artificial joint, titanium femur, etc. The idea behind this is that (other than a rather large scar) the leg will look "normal" and function normally for basic movement such as walking (after a period of physical therapy).

Pros - more cosmetically appealing, there are now expandable prosthesis that allow for growth in children

Cons - does not grow (unless you have expandable), leg length discrepancy, high possibility of infection, joint degeneration, high risk of fracture, may require bracing, multiple surgeries, will need to be redone when child is fully grown, limited physical activity for the duration of the patient's life, no high impact or contact sports due to potential loosening or fracture of prosthesis

3) Rotationplasty - The most radical looking of the options, but also allows for the most functionality long-term.The entire leg section of the tumored bone is removed, the foot is then rotated 180 degrees and the remaining tibia is attached to the remaining femur...thus allowing the ankle to function as a knee. (If you want to get technical, rotationplasty is considered an amputation...but I have it listed separately here.)
(www.rotationplasty.com)

Pros - ankle is made for weight-bearing, allows for full function as a below the knee amputee with no limits on activity (once fitted and accustomed to prosthesis), no phantom pains

Cons - unusual, could be cosmetically displeasing as foot is reversed, rehabilitation can be a long process

How do you like those choices? Although there are technically three options: 1) Amputation 2) Limb-Salvage or 3) Rotationplasty, it basically comes down to a decision between a leg that looks like what we expect a leg to look like or a leg that will allow you to live with no limitations...you cannot have both.

This information will be shocking to some. It was to us initially, but we began understanding and researching this piece shortly after Bailey's diagnosis, so we have had some time to process. It was as if there were two levels of devastation. Initially, the utter shock and disbelief of a cancer diagnosis and then again, as we realized that our active, athletic child was facing the loss of everything she loves. A totally different life on the other side of cancer. These are our choices and they are excruciating and cannot be made by anyone who does not have intimate knowledge of our child. They are beyond lousy options, but we have had some time to grieve and we are ready to fight to get this little girl her life back. We are currently researching and meeting with surgeons. Another huge piece of this is talking to kids and families who have been through it...so we are doing that as well...and their stories have been instrumental as we begin to develop some definitive views on next steps.

Please pray with us...for strength, wisdom and clarity as we make choices that no parent ever dreams of making. As I have mentioned before, we are well beyond ideal here. Based on what we have in front of us, we need to prayerfully consider the child God has created Bailey to be and the kind of life that will be acceptable vs. the life that will not be...to her.

It is an agonizing choice.

The Lutzie

When you have cancer, of course it is awful, for anyone. But when you are a kid with cancer, it is so completely horrible because of how quickly it interrupts your childhood and in such dramatic ways. It forces you to grow up, almost overnight. One day, you are at school, playing with friends, competing in sports, taking piano lessons, doing homework...not a care in the world. And then five days later, as it was in Bailey's case, you are learning words like tumor and port and chemo. School stops, play-dates stop, activities stops...childhood stops. Your days are filled with nothing fun...just doctors, needles, medicine...and a lot of really difficult and heavy decisions. 

So, when people do something to take our little girl's mind off of the hard stuff, we are so appreciative.  And one (of the only) good things about cancer, is that people really will make a lot of effort and go completely out of their way to make you smile - especially when it involves a child...and that part, has been a lot of fun. Specifically because it is Bailey that people are doing these nice things for...and she is so appreciative and it lifts her spirits so.

Today, we were able to spend time with Auburn football superstar tight end Philip Lutzenkirchen. He heard about Bailey's story and he wanted to get involved. He went out of his way to set up a special meeting and he brought a huge bag of Auburn goodies for her...posters, balls, pictures, etc. ( He even had some paraphernalia from an organization near and dear to my heart, the Auburn Women's Soccer Team.) Bailey was thrilled. She had been feeling down all morning because she was headed back to the hospital, but this really lifted her spirits and took her mind off of the next chemo. She is already talking about making sure we get to an Auburn football game next fall. A special thanks to Philip for taking the time to make our baby girl smile. Bailey said that once she is cancer free and her leg his healthy, she is going to Lutzie! We'll be sure to post the video. :)

Thankfulness

Thankfulness.

This word. I cannot escape it. I try to run, because it is too difficult to understand. I feel too weary to wrestle through this right now. Anger is easier and takes much less effort. I go there naturally. But God is doing more than whisper this word to my soul. I am unable to outrun it lately...it is everywhere. I have been writing journal entries about being thankful...or actually, my lack of thankfulness. Last week, "Jesus Calling" said that I should "punctuate all of my moments with thankfulness." I have finally started reading Ann Voskamp's book, One Thousand Gifts. It is beautifully written, wonderful, on its way to being one of my lifetime favorites...and so very convicting.

So what am I supposed to do with this? This not-so-gentle nudging. I thought I was thankful. I am. For all things good in my life. But, am I thankful for the bad? The things that are not in my plan? The difficult? No! The ugly, honest answer is that I am not. But if I read, search, know my scriptures...don't they say that I should be thankful for the hard too? I can't just pick and choose. We are to give thanks for all things. Of course I celebrate Him when days are good, when life is easy, when I am happy. But how quickly I turn to doubt, fear and anger when things seem to have veered off course. (Even though it is only in my perspective that we have gone off track - it was His plan all along.) Perpetually, in the Bible, people begin with thankfulness...the faithful, the disciples, Christ...they are always thankful first. I knew this, but I needed to really see, to be reminded...and God has used Ann Voskamp to gently begin nudging me back to truth

"Do I believe in a God who rouses Himself just now and then to spill a bit of benevolence on hemorrhaging humanity? A God who breaks through the carapace of this orb only now and then, surprises us with a spared hand, a reprieve from sickness, a good job and a nice house in the burbs - and then finds Himself again too impotent to deal with all I see as suffering and evil? A God of sporadic, random, splattering goodness - that now and then splatters across a gratitude journal? Somebody tell me: What are all the other moments? "

(Ann Voskamp, One Thousand Gifts)

Of course I don't believe in an impotent God. I believe in a God who calls me beloved. Who created the universe. Who knows every intimate detail of my days. He is my Abba. Father. But if that is true, if that is my heart...then comes the hard. The part where I must live what I believe. The scriptures are clear. Thankfulness come first. In all things.

Oh my...please God, no. I don't want to embrace this. I don't. How does this look in the harsh reality of living on this side of heaven? Now, in my life at this moment. In this place, this dark hole?

Cancer. My child. Thankfulness.

Can they go together? Must they go together?

Can I be thankful that...

My ten year old is battling a cancer that threatens her life? While we are hopeful, even following treatment, her life and body will be forever different? Forever weakened? My daughter is being subjected to this grueling chemotherapy, week, after week, after week...making her so sick that it is agonizing for this mother to watch? She is unable to be a child, go to school, play sports or spend time with her friends? My other kids are struggling...sad for their sister, needing more attention, wondering why things are not the same? I haven't spent time with my husband in weeks, all of our energies channeled into keeping our family moving forward?
Every day is so difficult...balancing life, doctors, logistics...and we are exhausted? Life as we knew it is over, never to return?

The obvious answer, the Biblical answer, is yes.

The more difficult question is how? How God?

This is the part that is going to take some time. He is slowly opening my eyes to this word, this word that I have glossed over for years. I am sure of that much. He has put thankfulness on my radar. But I do not know how to get there. To really understand this, embrace it...while my child hurts...it seems impossible. It is another of a number of things with which to wrestle...a hardness in my heart revealed by this horrible illness. I want to rest in thankfulness. I want to default to thankfulness. I don't know how. I think He will move...meet me in this...He must. He has laid it on my heart, yet I certainly cannot find peace in this on my own. I am too weak.

I am off to start my list of 1,000 things...but knowing that it may be a slow process. I am still struggling to breathe, so I will search for one blessing at a time. My prayer is that it is truly as eye-opening and  heart-healing as I suspect it has the potential to be. Initial obedience can lead to significant heart-change.

Thank you Ann for sharing Truth that I needed to hear...and for doing it in such a gentle, poetic way.

Living in the Day

Before our lives changed forever, I was already feeling a bit weary. The homework, driving, laundry, sports, chores...doing the life that goes with raising four children...can be tiring...repetitive. Still, I was content (or at least I thought so) because routine is comfortable. Plans are comfortable. The illusion of control is comfortable. I have never just "lived in the day." I thought I did - was...but looking back...it's laughable. Living in the moment isn't something we (recovering) Type A planners do well. Actually, we loathe it...it is completely foreign to us and it feels ridiculous and irresponsible. We are control freaks and not controlling every moment makes us feel...yucky.

But having a child with cancer, forces you to live in the day. In part because tomorrow is very scary and in part because your schedule is dictated by this insidious disease. The battles are grueling. The war is long. The emotions are raw. There are doctors appointments and chemo. There are side effects and fevers and hospital stays. The more you plan ahead, the more disappointments are left in the wake. It is not a schedule that can be controlled. So you end up living in the day, because if your child is home and feeling healthy...you want to treasure that day, those hours...those minutes. In the beginning, it was torture...the not planning, not knowing. Disappointment after disappointment...some small, some huge, all painful. But I am faintly hearing Him now...even though it is a whisper. It is there where I couldn't hear it before. I am sensing that there is something great to be learned here...in this valley. I don't want to admit it. No Lord. I don't want to hear it really...but cancer forces you to hear, to re-evaluate...to lean on Him.

My "Jesus Calling" for April 11 said this:

"To find joy in this day, you must live within its boundaries. I knew what I was doing when I divided time into twenty-four-hour segments. I understand human frailty, and I know that you can bear the weight of only one day at a time. Do not worry about tomorrow or get stuck in the past. There is abundant Life in My Presence today."

If I had read this three months ago I would have nodded my head, "Ahhh...yes...this is so true." I thought I understood.

I had no clue.

My first experiences at living in the day have come just recently. When you don't know what tomorrow brings, you have to, it is the only way to keep moving forward, breathing. Living in the past creates sadness, because the past was more simple, happier. The future is terrifying because it could hold the unthinkable. I was recently reminded by a wise woman that if I am too busy looking in some other direction, then I may miss the amazing things God is doing right now...in the moment. What if He is working miracles in my heart, in my life, in the heart and lives of those around me...and I am missing it because I'm facing the wrong way.

I still haven't embraced this...living in the day. I don't know if I ever can, fully. I am selfish and sinful. Contently living in God's plan means that I must trust that He knows best. Even when I think otherwise...when His plan is different from my plan. It takes a tremendous amount of discipline to keep your mind on track, in the moment...to keep it from wandering someplace other than the now. I need to spend time with Him each day or else losing focus is guaranteed. But I do see change happening. Slowly. I am treading carefully as I try to let go of the schedule and planning...the facade of control.

Something is happening deep in my soul, of that I am certain. Even though I don't like it...it is beyond painful. He is trying to show me something. I don't want to admit it...but my heart is beginning to stir...my soul beginning to shape. If I could just stop kicking and screaming long enough...listen more, complain less...be thankful in every circumstance...

I am fairly certain that then, His voice would grow louder than a whisper...

The Bailey Brothers

I've mentioned before how amazing our kids' school is...but today...I am speechless. There was a group of parents that met for prayer this morning, specifically for our sweet Bailey. Then, the boys and girls in the fourth grade also split up to have their own prayer time. Following, a group of the fourth grade boys shaved their heads...to pave the way for Bailey...so that she would not have to do this "hair" thing alone. I really have no words. In an era when schools are so politically correct that they are unable to be effective in the lives of our children...to be so loved by this precious school, to see these parents and kids so willing to step up and bridge the gap for our little girl...to support us and carry us through this...thank you doesn't seem like nearly enough. There are no words suitable for what our hearts are feeling. Thank you to everyone for today...especially these dear boys...no, these are not boys...they are little men of God.

Check out the amazing video:

The Bailey Brothers

What if this resurrection thing really did happen?

I'm a believer. Even in all of my angry, soul-searching rants of late...I still believe. Believe in what you may ask?

I believe in Jesus.

Oh no...there is that word, Jesus! Please keep reading. I promise I'm not going to go into some crazy, Bible-thumping, cheesiness. Not my style. Those people drive me nuts. You can't beat anyone over the head to make them get it...doesn't work that way. He has to find you.

He found me in college. I grew up in church, but it was a lot of years later before I finally got it...the relationship with Christ part. It took many years before it was completely woven into the very fabric of my life. The whole, "You've just got to have faith," thing didn't really work for me. I like information...lots of it. I like research and history. While I don't need proof beyond a shadow of a doubt to believe in something...it needs to make enough sense that it could be plausible. After that, if God is calling, there is a heart piece that will get you the rest of the way. It will help you cross the bridge that is the faith part...because after all...we are finite and it is impossible to know everything...about anything.

In college, I was blessed to meet some friends who were different than those I'd known before. They "talked the talk," but as I watched them live, they also "walked the walk." Me? I had a foot in both worlds...I knew what to say, I knew Bible stories, I went to church. However, true peace, hope, purpose for my life? It wasn't there. But God was working. I prayed that he would begin changing my heart...and He did. I thought that meant that I wouldn't be able to have any fun, but really, I was slowly convicted of behaviors, lifestyle choices, attitudes and beliefs that may not be pleasing to Him and it wasn't difficult to give those things up. When your purpose is different, and God is working...it doesn't feel as though you are losing things...because the big picture is more clear. Still, it wasn't overnight. It was gradual, over the span of a few years. God was working in my heart, but for me, part of that included reading, learning, researching the historicity of things. Even currently, I enjoy books about "faith," simply to remind me that you don't have to check your intellect at the door to be a Christian...a couple of chapters with C.S. Lewis or Tim Keller will clear up any misconceptions about that. Everyone has different pieces they need for their walk to grow. For me, it was about truly learning what was in the Bible and prayer for God just to get me there. It was also reading things other than the Bible (there is a list of some of my favorites on the right sidebar of my homepage), books that described the spiritual journeys of others, the reasons for God, the proof that is available. Another piece of the puzzle in my openness to the notion that there must be a Creator, is nature. It speaks to me. When I spend any time outside and note the beauty of His creation, the order, the perfect design of even the smallest creature...I am moved. Bottom line though, is that it is about Jesus. That I can't do right on my own, but if I accept Christ, then He payed the penalty for me. So even with all of the knowledge, at some point it comes to down to one of three options. Is he Lord, liar or lunatic (which is actually one of my favorite ways to think about this...as C.S. Lewis describes in Mere Christianity)? There are no other options...it must be one of those three.

So why the Jesus talk? Because today is Easter. Even with all that can go in to "religion," the bottom-line is that it is about Christ...did He die for me? I think he did...and it has changed the way I "do" life. I don't just meet Him on holidays or maybe even on Sundays. Every thought, every decision...in times of blessing and, as I am currently experiencing, in times of sorrow...Christ is there. Life on earth will end for all of us at some point. Whatever you determine, it is probably a good idea to at least give the topic some thought...and decide something. The stakes are too high for indifference. This resurrection thing...if it really did happen...then shouldn't that change everything?

If you've had bad experiences with crazy "Jesus" people in the past, let me apologize to you for them. Most don't mean to be loons, they are simply passionate and they want others to experience the joy that they have. Their intentions are good, even though the delivery can be ridiculous or judgmental or hypocritical or downright nutty. Some think it is completely up to them, and although God does call us to share our faith, He's got to be in it. It isn't up to us.

One thing that I love about our church, is that it is geared toward people with minds. It isn't a lot of rah-rah, dancing and snakes...it is just good, solid theology. If Easter has left you with questions, you owe it to yourself to at least do some research. The stakes are too high not to at least check it out. Find a good church. Not one that preaches prosperity or picks and chooses which parts of the Bible they like. Pick a good, theology filled church that believes the Bible in its entirety is the Word of God. And then ask Him to come into your heart and see what happens...

Happy Easter

Easter looked a little different this year. Bailey has been in the hospital for three days due to a fever...which is quite normal for chemo kids. It has been hard and today was certainly not what we'd planned. We decided that we needed some time together, just the six of us. So Easter morning happened at Scottish Rite. Not ideal certainly, but we tried to enjoy the day anyway. I do think we managed to squeak out a few smiles.

I Didn't Read About This In Any Parenting Books...

I remember the anxiety I felt the first time I became a mother. Not in those first few days...when I was in the heaven that is an hours old baby. Those sweet smelling, teeny tiny little bodies that melt into you...I treasure those early moments. I still have days now when I long for that...for just one more newborn. Instead, I'm talking about shortly after, when they send you home from the hospital two days later and you find yourself exhausted, standing just over the threshold of your house, holding one of those ridiculously awkward bucket carriers as you utter out-loud, "Uh, ok, ...now what?" I always battled a bit of the baby blues; I think because it just felt so overwhelming to me...the enormity of the process...raising a child to adulthood.

But then you get a few years of motherhood under your belt and you start to get a bit overconfident. A couple of years in, I thought I knew everything. I mean, how hard can parenting be? You simply feed them, change diapers, they nap twice a day and they go to bed at 7:00. Easy, right? Even at this point in my mothering, I'm pretty certain I could get almost any baby to sleep through the night, I can change diapers with my eyes closed (we did diapers for ten years in a row) and I am fairly convinced, that after four success stories, I've mastered the art of potty-training. However, these itty bitty little people grow up and so do our responsibilities - and what moms realize in the school age years, is that we really don't know anything. The problems are heavier, there is much less black and white and so much more gray, there are hearts that need shepherding and these sweet babies have grown into small adults with all of their own "stuff." So that is where I have been in the past year or two...a mother of school-age kids coming to terms with the reality that I know very little and accepting that it really does not get easier as they get older...the parenting challenges simply shift to different arenas...but it certainly is no less complicated. I am continually looking to more experienced moms for advice. I was completely overwhelmed by my responsibilities...feeling like mediocre would have to be my new normal because I was not equipped for this motherhood thing.

And just when I thought I had been completely humbled...

...my child was diagnosed with cancer.

If I was insecure in my mothering skills before...now what? This situation is so much bigger than I am and I am not trained to walk this child through this. I can barely hold myself up. How do I carry her? I keep delivering bad news. She is sad and then rallies, puts a smile on her face and moves forward. Then I give her more bad news and she does it again...the same cycle. How many times can we do this before the smile is permanently gone? Before her spirit is irreparably crushed? Will she cling to Jesus...or run from God because His plan seems too hard to understand? I tell her God is good...but really, how do I convince her of this? It seems as though every hour contains a new disappointment. Some large, some small...but one hard thing after another, after another, after another. How can a ten year old deal with this?

In the next few days, we have to sit down and give her Part II of this nightmare. Not only must she endure months of chemotherapy...feeling awful and missing out on life, but soon, she will face a surgery that may be even more difficult. In fact, the chemo could seem easy in comparison to what she will be left to deal with after we remove this tumor. There are several options...but none are ones that a mother would choose for her child. I want her to have a leg that both looks normal and functions well...and from what we are researching...these two things do not go together...they do not co-exist. Can I give her this bad news too? How do I find the words? What do I say? How much can this precious child take? Why God? It is so difficult to understand.

When I signed up to become a mother, this isn't what I had in mind. I was day-dreaming about what color to paint the nursery and chubby baby snuggles and a toddler with a little hair sprout popping out of her head. Walking my child through a devastating diagnosis, explaining life-altering surgery...this was not my plan.

Wrestling with my own suffering is one thing...difficult, but do-able. Helping this child through hers? Equipping her to deal with a new life? To answer people's questions? To endure sorrow and disappointment? To deal with stares and mean kids? To accept that everything is different now and that we can never go back? To trust God's plan? To embrace unwanted change? Not to get jealous of kids who are healthy and carefree? To keep her sweet spirit in tact? To look at the big picture...to see how she will be able to use this part of her story?

Again, more questions than answers these days. I'm feeling lost as a mother right now - so unsure of each next step. It is more challenging than anything I have ever done. If I feel as though the burden is so much that I could crumble at any moment...how do I then hand this journey to a child...to my child?

It just seems like far too much for her to carry...

Bailey Update

Just a brief update on how Bailey is doing...(if you want the details, please let me know and I'll give you the information for her website)...

Here is a look at the time-line thus far:

Prior to March 11 - generalized knee pain for about six weeks in our otherwise healthy and very athletic ten year old, no cause for concern, she was doing a number of sports and it appeared to be an over-use injury, no reason to suspect anything out of the ordinary

Sunday, March 11, 2012 - took her to a Children's Healthcare satellite location for x-ray on her knee because the pain was continuing to worsen...expecting it to be a sports injury (a trip in the afternoon followed because our youngest child sliced his head open and needed stitches...our first double-ER visit day)

Monday, March 12, 2012 - Disturbing phone call from our (normally calm) pediatrician in which she suggested with some certainty (and panic in her voice) that it was a bone tumor, made an appointment to see a surgeon, who was also concerned and scheduled an MRI

Tuesday, March 13, 2012 - MRI...results indicate need for further examination

Thursday, March 15, 2012 - Biopsy in the morning; cancer diagnosis (Osteosarcoma) in the afternoon, in less than five days we went from a completely "normal" life to the parents of a child with cancer, in less than a week, our entire lives were changed forever

Friday, March 16, 2012 - chest CT shows no evidence of visible metastasis

Tuesday, March 20, 2012 - bone scan showed no evidence of visible metastasis

Friday, March 23, 2012 - port placement surgery in the morning and first round of chemo that evening

We are now one full week out from her first chemo. The first few days were rough, but she seems to be doing much better. The nausea still comes and goes and her fatigue is quite evident. Prior to cancer, this child was non-stop...up in the morning with a smile on her face ready to take on the day...and full of energy all day long. This change is a bit difficult for us to get used to...watching her so sick and not wanting to do much more than lie in bed watching t.v. She will have a full three weeks off after this chemo...which has been really nice. She'll have time to start feeling better and we'll all have some time away from the hospital. The next session though will be three weekends in a row...which I suspect will be very difficult and it is looming like a bit of a dark cloud in my mind. We are trying to just enjoy these few weeks.

We continue to covet your prayers: for full and complete healing the first time around, for surgery options (which are quite complicated and emotionally stressing) and that God changes our hearts and gives all six of us the strength and peace to meet the ever-changing things our family is facing...