5.29.2012
FAQs - Bailey, Osteosarcoma and Rotationplasty
While we do not feel as though we owe anyone an explanation for our choices, we do understand that there are many who know and love Bailey and truly care about how we arrived at the place of choosing what appears to be a very unusual surgery. We also understand that people may be stumbling upon this blog after discovering that their own child has this insidious disease. We are learning much from others who have walked this road, so I am trying to be very thorough in sharing information in case it can be of assistance to someone else who may faced with these unimaginable choices for their child.
The first time I saw a photo of a rotationplasty, I was horrified. I actual remember saying, "There is absolutely NO way I will ever do that to my daughter." That was before I knew. That was in the beginning of this process...before I learned the true horror of this disease. What we realized early into our due diligence was that there are NO good choices when it comes to surgical options...osteosarcoma has taken them away and replaced them with nasty, ugly, scary things. This mother's choice would most certainly be that my daughter never got cancer and that she was able to continue on as a happy, naive kid...doing the active things that she loves. That's my choice. However, that is not going to be Bailey's story and we have to accept that because we have to face forward, she needs us to face forward. Through time, prayer, research and talking with people who have been through it, God has begun to change our hearts. Rotationplasty looks incredibly different, certainly...and is shocking to everyone who sees it for the first time. What we have begun to understand though, is that this surgery is really an amazing scientific innovation that uses God-given parts (the kind that work the best and last the longest) to allow our little girl to move on from cancer and get back to what she loves doing. Even now, as sleep eludes, I go through the choices again...hoping and longing for another way...and each night, I come to the same awful conclusion. This is the only way for this child.
What were your options?
Surgery is absolutely imperative for osteosarcoma. It is not optional and the tumor will not just completely disappear through chemotherapy. There are several surgical options, but choosing the correct one depends on numerous variables, including but not limited to: the age of the child, location of the tumor, joint involvement, desired activity level post-surgery, etc. One of the most simple and complete discussions I have found on the issues faced can be found here (it is taken from an interview with a doctor at MD Anderson):
Osteosarcoma Surgery
I also wrote a blog post several weeks ago describing the choices in-depth as they relate to Bailey specifically. For that information, see this link:
Bailey's Surgical Options
What is rotationplasty?
Rotationplasty is a form of amputation in which the diseased bone is removed and the leg is then rotated 180 degrees and reattached (essentially - backwards). The rotated ankle now functions as a knee and the patient wears a prosthetic to serve as the bottom portion of their leg. It was first done in Germany in the 1930's and it is used quite a bit in Europe. (The reasoning most suspect is that Europeans are less vain than Americans.) Dr. Van Nes introduced it in Canada in 1950 and it is much more widely accepted there. The benefit is that it is classified as a below-the-knee amputation, with all of the mobility and functionality that comes from that designation. Many times, patients receiving this surgery would be facing high, above the knee amputations...which although can be quite acceptable with the high-tech prostheses available now, are still less functional and energy efficient than a below-the-knee amputation.
It is best described visually and we have found the videos below quite helpful in explaining it to people. Brace yourselves...if you have never seen one...it does seem shocking at first. It takes a while to appreciate the genius of it. :) The first video is less than five minutes, while the second if for those who want detailed information, as it is close to thirty minutes.
Rotationplasty - short video
Rotationplasty - long video
What are the positives to rotationplasty?
While it will take quite a bit of time (years) for Bailey to become proficient on her prosthetic leg, once she does so, she will have no limitations to activity. Surprisingly, it can be labeled the most simple of any of the options. There are few complications, low rates of infection and the bones typically heal to be quite strong, and in most cases, it is one surgery and done. It looks different (ok...it looks crazy), but it is extremely functional - more so than any of her other choices. Because she will have a "knee," she will have much better control over her prosthetic leg (the foot also provides good sensory feedback, since you cannot feel the foot on the bottom of a prosthesis). There will be no long-term phantom pain, because the nerves are not severed and her foot is still there. The human foot is created to be weight-bearing, so you do not have the over-use/stress/spur issues that can come from transitioning a non-weight bearing extremity (like the thigh) to weight-bearing. She will be able to play sports, wrestle with her kids, ski with her family, climb mountains...whatever it is she decides she wants to do.
What are the drawbacks to rotationplasty?
Cosmetics/aesthetic appeal is the only major drawback. It is a significant issue, but for many people, they quickly forget about the "look" once they see the functionality. Although, it is certainly not for everyone.
Most people choose limb-salvage (replacing the cancerous bone with a metal rod and artificial knee joint - called an endoprosthesis) when in this situation...why is this not the right choice for Bailey?
Limb-salvage is probably the right choice for some kids and it tends to be the current "favorite" of the surgical community (although other decisions are on the rise as kids become more demanding about the functionality they want post-surgery). As it relates to Bailey, we feel that limb-salvage has some serious flaws:
-Her activity would be restricted forever...no high impact sports, very little running, pounding, twisting or anything that could damage the knee and femur replacement because the parts loosen over time (both through use and through growth of her bone in both length and width as she grows taller). The parts only last for so long and they can only be replaced so many times before the bone is worn away to the point that there is nothing left to attach it to. For the athletic and activity level that Bailey is used to and wants to continue, this simply is not an option. (If you think about your 70-year old grandfather getting a new knee and both the years he needs it and his activity level...vs that of a 10-year old child...there is quite a difference.)
-She has a good bit of growth left (height) and would need an expandable rod, so she would be guaranteed multiple procedures to lengthen the rod and at least one replacement surgery when she stops growing to put in an adult rod, but most kids typically have numerous surgeries over the course of a lifetime (and these are not easy surgeries...typically a long period of non-weight bearing, crutches, walker, high risk of infection, and significant rehab). The expandables are less durable as well, so if she did decide to push the boundaries a bit...chances are she would break it.
-The risk of serious life-threatening infection, rejection and complication is significant and grows with each surgery. Many infections end up resulting in amputation.
-If she was fully grown (thus not needing the more fragile expandable and limiting her potential surgeries and maybe giving her a bit more leniency on activity level) or if we could save her knee, we may have chosen something different, although I'm not sure about that. However, she has significant height potential left and we cannot save her knee...both fairly large issues for which to find solutions.
What about an above-the-knee amputation? It doesn't look nearly as unusual as people are used to seeing them, plus the technology behind prosthetics allow for unlimited activity?
This was definitely a consideration. The technology of prosthetic legs has come a long way (especially with so many soldiers returning as amputees). If we were to amputate, it would be mid-thigh for Bailey. She would have much less functionality and it would use much more energy than a rotationplasty. Also, the thigh is not meant to bear weight, so most above-the-knee amputees have serious hip or other issues from using the limbs in ways in which they were not designed. Phantom pain is a major issues as well and should be considered very seriously as it can lead to a lifetime of pain medication.
Are you concerned about the way rotationplasty looks?
Uh...let me answer this with an emphatic, "Yes!" No parent wants to intentionally disfigure their perfect looking child. That is unnatural. But osteosarcoma is insidious. She can either have a leg that lets her do what she wants to do or she can have a leg that looks "normal." Osteosarcoma will not let her have both. This is not a choice that we want to make. While we have peace that this is the correct choice for her, we still ache wishing that there was another way. There is not. We have no peace in the reality of being forced to make this decision for our daughter...it is beyond awful.
Aren't you subjecting her to a lifetime of being different?
No, we are not subjecting her to this different life...cancer is. We do not want cancer to also keep her from doing the things she loves to do. Yes, she will look different. There will be hard times. We know that the years from about 12-17 have the potential to be exceptionally tough. But we cannot plan her entire life around the drama and image consciousness of the teenage years. Even the most outwardly perfect girls hate middle school. No one likes that time period. Mean girls exist, superficial teenagers abound...regardless...and so there is no way that we can protect her from all of the pain. We also don't want to teach her that looks are such a priority that she should subject herself to being miserable for the rest of her life, simply to fit in and look "normal." That doesn't feel like a good lesson either. Ultimately, this is God's plan for her...not some deviation from the plan...and so we hope and pray that God will grow in her a heart strong enough to be confident in her identity in Christ. Still, this is not an easy choice and it is one we would rather not be making.
Don't sports end after high school? Why the focus on athletics?
Many assume that because Patrick and I were both college athletes, that we expect the same of our kids. We don't. To compete at that level takes a particular skill set, personality and a bit of "luck"...all of which are totally out of our hands. For many, sports do end after high school. Right now, Bailey does want to continue to play sports and this surgery will hopefully (with very much hard work) give her that option. But more importantly for us, it is about being able to live an active and healthy lifestyle...pursuing a number of activities that will keep her physically fit, able to relieve stress, etc. For a true athlete and active person, sports do not end after high school. I played soccer (with men) throughout my twenties and would still do so now if I had the time. I also currently do boot camp style workouts, sprint triathlons and mud races. Patrick played baseball throughout his twenties, he still plays ice hockey and a good bit of golf. We want Bailey to have those same opportunities...whatever it is that she chooses. She is an on the go kid and I would imagine she will grow into an active adult because that is the kind of family she is being raised in. We don't want her to miss that fun. We also want her to be able to run and jump with her kids or go skiing with her family or play tennis with her girlfriends...things she would not be able to do with a limb-salvage.
Can't she learn to love other things?
You can learn to love other things, but I'm not sure that (short of a miracle) you can change your entire disposition. Bailey would be a boy if she could be. Just the other night, she was sad and needed to do something, so the two of us (mother and daughter) went outside and threw the football (very carefully with her bad knee) for almost an hour. She has no desire to sit around ever and I don't think that will change. She could pick up some new hobbies, but I would hate for her to face repeated heartbreak for the rest of her childhood because she was having to watch others do the things that she loves. Because of cancer, she will have already missed far too much.
Have you met families who have made this choice?
We have either met with, spoken with or traded e-mails with quite a few families who have made this choice. There are several girls around Bailey's age and I e-mail or talk with their moms regularly. We went and watched a boy named Sean play a high school lacrosse game. We also met a very awesome kid named Sam while we were in Florida visiting the surgeon. He took off his leg for Bailey, showed her his little leg. She was very impressed with his mobility. We also practically stalked a 25-year old woman named Lora who had the surgery at 11. I saw her online and we knew we had to find her. Both she and her parents were so gracious and spoke at length with us. She played numerous high school sports, and then after high school pursued the Paralympics and is on her way to London this summer for her third games. She is married with a baby now and has offered to come visit Bailey after her surgery in June. This list goes on and on...
Have you spoken with anyone else who has swayed you in this direction?
The most convincing arguments have come from those having either first or second hand knowledge of the "after." Physical therapists, nurses, parents, doctors, kids who have had the surgery...as they share about their experiences, functionality, what they have seen...we realize that most wish more people would choose this option, rather than being too scared off by the looks to even consider it.
What does Bailey want?
Bailey, without hesitation, wants rotationplasty. Initially, she had enough to deal with just understanding cancer and all of the terminology and information that goes with that. We held off on the surgery information for a while...all that she knew was that her sports were in jeopardy and it would be a very long recovery. Finally, I presented all three options to her (Patrick thought mother/daughter would be better and I tend to agree...she and I are very close and it was an excellent talk)...there was devastation in her eyes when I said that she would never play basketball again with limb-salvage...complete heart break. When I told her about rotationplasty she asked what the limitations were...could she play sports? I said she that she would have to work very hard and it would take some time, but she could play whatever sports she wanted to - and her eyes lit up...and she has not changed her mind since. One of her first thoughts was even, "It might be cool to look different mom." I know she is ten and that will change, the last thing a teenager wants is to be unique, but I think it speaks a lot to who she is. We have spent much time focusing on Bethany Hamilton and those types of stories - about people who had hard things happen, but that it opened doors and opportunities that they never would have had otherwise. She is still sad, angry, afraid...all of those healthy emotions...but she has been unwavering in the choice. We are blessed that all three of us were feeling the same way. I'm not sure what would have happened if there was no consensus. As much as I don't want to admit it, I also think that God has uniquely designed this child for this, and although I HATE the idea of what we have to do...I also believe that He is preparing her to be ready when the time comes.
Anything else?
Cancer is awful - especially for children. They suffer tremendous pain, both emotionally and physically. They miss out on much of life as they spend time either in hospitals or at home feeling sick and tired. If you can get them through cancer, if they can beat it, then you want nothing more than for them to return to being a kid...not to a life of more restrictions, more pain, more surgeries, more watching others do...more hard. Even if the cancer is gone...the ramifications linger and it still wins. This is a battle we are in and there are no guarantees. This surgery is part of what we must do to try to win the war. We are trusting in the doctors, the chemo, the surgery - all of the pieces in the hands of our great Physician...the one true Healer...to beat this cancer so that she can live. We don't want to do this. We still have no peace about the fact that we have only three agonizing choices. But this is our path and at some point, as parents, we must step up and attempt to move through this...making the best possible decision for this specific child. Choosing this particular surgery, the point of this, is so that once the cancer is beaten, she can truly LIVE...and not spend the rest of her life watching from the sidelines.
Bailey Update
So, just a quick Bailey update. She has finished her first two rounds of chemo, minus one Methotrexate (we will make it up later), which we ended up post-poning due to potential kidney issues...but it turned out that her kidneys were fine. Based on the national osteosarcoma protocol, it is now time for the tumor to be resected. She will be having rotationplasty surgery on June 5, 2012. This surgery will be very difficult on all of us - but especially for Bailey as her body will be forever altered. Following surgery, she will have a few weeks to recover. Then, she will begin chemo again...the time and medicines dependent upon whether or not the first rounds were successful at killing most of the tumor. We have missed much school this spring, however, she was able to attend many of the fun end of the school year events, so for that, we are very thankful. Please continue to pray for our little girl.
5.23.2012
Bailey's Surgery
I've written at length about the first few days of our journey into the world of childhood cancer. The complete shock and disbelief about the diagnosis. The wrestling with God. The crushing, suffocating pain. What I haven't spoken much of was the second layer of our grief. After we had a few agonizing days to process the initial news...it was time to begin formulating a plan...of determining what was next...of facing forward. Oncologists don't talk much about the surgical options as it relates to osteosarcoma, at least ours didn't. They save that for the specialists. They point you in the general direction, and then you are on your own to find a surgeon and make decisions regarding that particular phase of the treatment. So after a few days, we could scarcely breathe again, and we allowed ourselves back on the Internet (it was much too scary in those early moments) to begin researching surgical options...and that is when the next layer of grief came rushing, like a second tsunami wave washing over still fresh devastation. We realized that while there was hope that we could beat this hideous disease, we learned that our child would fight this brutal war only to be handed back a life that looked drastically different than the one she had prior to cancer. This was not some middle-aged man we were planning a life for, this was a ten year old girl. A girl who loves sports and running and jumping and tree climbing and wrestling with her brothers and who rarely sits still...ever. I had just come out of the pit, ever so slightly...when I immediately went tumbling back in...grasping, clawing...again...grief not as heavy as the first time around, but nearly so. How could I deliver this news to a child who was already carrying more than she could bear?
Initially, we'd heard all about this supposedly great thing called "limb-salvage." About how kids with osteosarcoma used to face certain amputation, but now, their limbs could be saved in most cases. But the more research we did, the more difficult and confusing and disheartening it became. Each situation is different, depending on many factors: the type of cancer, the location of the tumor, the age of the child, the potential growth (height) the child had left, the desired activity level after surgery, etc. In our case, we learned that there were three choices and three choices only, and they were all horrible. The bottom line was, that based on the location of her tumor, both Bailey's knee and part of her femur had to go. One solution for this was the famous "limb-salvage" surgery, which really doesn't salvage a limb other than for cosmetics and very basic usage. Then there were also two forms of amputation, a straight above-the-knee amputation or the insanely crazy looking rotationplasty. While we are grateful for the developments in chemo-therapy and for the presence of choices that never used to exist, we began to realize that "choices" might not be the correct terminology for this decision...because none of the options were anything that a parent would ever willingly choose for their child. As I have said before, cancer takes away any good choices, and that was certainly proving to be true here as well. I read a terrific article that was very concise, yet throrough, as an Dr. at MD Anderson summed up the issues. If you are interested, here is the link:
Bone Surgery Options in Young Patients
I wrote a detailed post about the three surgery options that applied in our case specifically, and if you are interested in reading that, it can be found here:
Surgical Options
So we sat in this second tier of grief for several weeks...heart-sick that we were going to have to tell this athletic, active child that her sports were over...for good...at ten. It was heavy and awful and unsettling. Although we had no idea which direction to turn yet, we began the process of looking for a surgeon. The protocol for osteosarcoma is standard, and surgery occurs at 10 weeks...and so there is precious little time to make this agonizing decision. We read everything. Everything. I'm not sure that an article exists that I have not read. We talked to numerous surgeons specializing in various options. (One thing to note on surgeons, if you are walking this road...they all favor or have a strong opinion about one surgery or the other, so you must know your child. The good ones will admit that one surgery is not correct for all children...but many do not...they feel strongly that their way is the only way. You must do your own research.) Some of the most instrumental people we have spoken with have been those who have seen the after-affects...either first or second hand. We met with a physical therapist who was extremely helpful...going through realistic expectations in each case. We spoke with children who have gone different routes. We have met with families. We have left no stone unturned in our insatiable thirst for information. Wishing, hoping, praying that there was some other way...any other way.
There is not.
We have decided (Bailey included) after much agonizing, prayer and trying to talk ourselves out of it, that rotationplasty is the best "choice" for this child. While it looks quite radical, as we have learned more, we have come to appreciate the brilliance behind this surgery. The below videos are quite helpful in explaining the procedure. Brace yourself, because if you have never seen one...it can be shocking:
Rotationplasty (short video - less than five minutes)
Rotationplasty (long video - approx. 30 minutes)
Basically:
-The functionality will be limitless (eventually); with a prosthesis she will have no restrictions to activity and she should be able to return to sports and do well (using the ankle as a knee will allow her to function as a below-the-knee amputee...which is more energy efficient, easier to manage and the foot is already designed for weight-bearing, so there are less long-term over-use issues than an above-the-knee amputation). Having a functional knee joint is critical in athletics.
-There is little risk of complication or repeat procedures. It is typically one surgery and done.
-There is no phantom pain, since the foot is still there and no nerves are actually cut.
-It uses parts that God has made and they just work better and last longer than anything man has made up to this point.
-Bailey wants to lead an active and athletic life and this surgery provides the best opportunity for that.
There is heated debate in the medical community as to which surgical choices are best for osteosarcoma. Quite honestly, I think they all stink and to call them choices is ludicrous. However, we strongly believe that each child is different and wants different things from life, and so in evaluating this, we are speaking only of Bailey and would never push our opinions on another family. You must have intimate knowledge of the child involved to have any hope of making the appropriate choice.
Tomorrow, I will post answers to some FAQs...because we are finding that many people are wondering the same types of things, so, more to come soon...
Initially, we'd heard all about this supposedly great thing called "limb-salvage." About how kids with osteosarcoma used to face certain amputation, but now, their limbs could be saved in most cases. But the more research we did, the more difficult and confusing and disheartening it became. Each situation is different, depending on many factors: the type of cancer, the location of the tumor, the age of the child, the potential growth (height) the child had left, the desired activity level after surgery, etc. In our case, we learned that there were three choices and three choices only, and they were all horrible. The bottom line was, that based on the location of her tumor, both Bailey's knee and part of her femur had to go. One solution for this was the famous "limb-salvage" surgery, which really doesn't salvage a limb other than for cosmetics and very basic usage. Then there were also two forms of amputation, a straight above-the-knee amputation or the insanely crazy looking rotationplasty. While we are grateful for the developments in chemo-therapy and for the presence of choices that never used to exist, we began to realize that "choices" might not be the correct terminology for this decision...because none of the options were anything that a parent would ever willingly choose for their child. As I have said before, cancer takes away any good choices, and that was certainly proving to be true here as well. I read a terrific article that was very concise, yet throrough, as an Dr. at MD Anderson summed up the issues. If you are interested, here is the link:
Bone Surgery Options in Young Patients
I wrote a detailed post about the three surgery options that applied in our case specifically, and if you are interested in reading that, it can be found here:
Surgical Options
So we sat in this second tier of grief for several weeks...heart-sick that we were going to have to tell this athletic, active child that her sports were over...for good...at ten. It was heavy and awful and unsettling. Although we had no idea which direction to turn yet, we began the process of looking for a surgeon. The protocol for osteosarcoma is standard, and surgery occurs at 10 weeks...and so there is precious little time to make this agonizing decision. We read everything. Everything. I'm not sure that an article exists that I have not read. We talked to numerous surgeons specializing in various options. (One thing to note on surgeons, if you are walking this road...they all favor or have a strong opinion about one surgery or the other, so you must know your child. The good ones will admit that one surgery is not correct for all children...but many do not...they feel strongly that their way is the only way. You must do your own research.) Some of the most instrumental people we have spoken with have been those who have seen the after-affects...either first or second hand. We met with a physical therapist who was extremely helpful...going through realistic expectations in each case. We spoke with children who have gone different routes. We have met with families. We have left no stone unturned in our insatiable thirst for information. Wishing, hoping, praying that there was some other way...any other way.
There is not.
We have decided (Bailey included) after much agonizing, prayer and trying to talk ourselves out of it, that rotationplasty is the best "choice" for this child. While it looks quite radical, as we have learned more, we have come to appreciate the brilliance behind this surgery. The below videos are quite helpful in explaining the procedure. Brace yourself, because if you have never seen one...it can be shocking:
Rotationplasty (short video - less than five minutes)
Rotationplasty (long video - approx. 30 minutes)
Basically:
-The functionality will be limitless (eventually); with a prosthesis she will have no restrictions to activity and she should be able to return to sports and do well (using the ankle as a knee will allow her to function as a below-the-knee amputee...which is more energy efficient, easier to manage and the foot is already designed for weight-bearing, so there are less long-term over-use issues than an above-the-knee amputation). Having a functional knee joint is critical in athletics.
-There is little risk of complication or repeat procedures. It is typically one surgery and done.
-There is no phantom pain, since the foot is still there and no nerves are actually cut.
-It uses parts that God has made and they just work better and last longer than anything man has made up to this point.
-Bailey wants to lead an active and athletic life and this surgery provides the best opportunity for that.
There is heated debate in the medical community as to which surgical choices are best for osteosarcoma. Quite honestly, I think they all stink and to call them choices is ludicrous. However, we strongly believe that each child is different and wants different things from life, and so in evaluating this, we are speaking only of Bailey and would never push our opinions on another family. You must have intimate knowledge of the child involved to have any hope of making the appropriate choice.
Tomorrow, I will post answers to some FAQs...because we are finding that many people are wondering the same types of things, so, more to come soon...
5.10.2012
Two Worlds
To some extent, we have moved past the shock and denial stage of this cancer journey (although not completely...I think we will carry some sense of the "I can't believe this really happened to us" feeling forever). The truth is that our current reality is still very new and the territory is extremely unfamiliar and painful to navigate. In the first couple of weeks, I could do nothing but look either backward - at what was no longer...or forward - at what was never going to be. I think I am beginning to submit to this path (as if there was a choice?) and to live in the present...simply because it is the only way to make it through each day. Even so, the present is proving to be difficult terrain, as I attempt to find a balance between two very different worlds.
No one likes hospitals. The only thing good that happens in a hospital is that new babies are born, and if you aren't visiting for that blessed event, then any other trip stinks. They are filled with white walls and small windows. The environment is cold and mechanical...machines buzzing and beeping and whirring at all times. Outside the day is bright and sunny and the world bustles by. Inside, it is dark and quiet and time stands still. Childrens' hospitals are even worse...especially in the cancer wing. You walk the halls past pictures of precious and smiling bald children...and only now do I have a sense of the war those sweet faces have waged. It is miserable. Still, what we are finding when you have a child with cancer, is that there is some comfort in the hospital. A bit of routine to it. A bit of familiarity. You get to know the nurses. All of the families there have been baptized by fire into a club that no one wants or expects to join. We understand the brutalities of chemo, the grueling nature of the schedule...of juggling life and cancer, of being consumed by fear, of horrible choices. You don't feel alone...and if you are in the hospital, you are fighting the illness...and so it is one of the few times when you have some sense of empowerment because you are actively battling the disease. It is still stark and sterile, but it is a community and there are few distractions. You can set aside life, withdraw a bit...and focus on the fight.
But then there is the other world. Home. Obviously our preference for places to be. When we are in the house with just us, life is relatively normal. Although normal looks a bit different...as we have a child with bone cancer who has lost all of her hair and can no longer run around outside with her siblings, climb into her brand new loft bed or go to school with her friends...but even with all of that - home still feels good. Any mama knows that there is something about having all of her babies under the same roof. If we could simply hide in our house, home would be amazing. In our little cocoon, it is easy to remain relatively free from pitty parties. But with home, comes the "doing of life" - our old life - and jumping back into the crazy suburban routine is hard. It makes the pain feel new again, fresh...almost as raw as it was in the first few weeks. The typical things of life, even though I know they are important...feel ridiculous, excruciating, superfluous. I wish I were mature enough, wise enough...to rise above - to embrace our journey as one designed specifically for us (because it is) and be thankful for it...to refrain from looking around or back. But I am not that woman...at least not yet. I am praying that I will get there, but I feel that peace might still be quite far off. I see Bailey's friends run into school on two healthy legs, and it hurts. I get an e-mail about summer basketball camp and my heart sinks. I see information about the talent show, which Bailey was looking forward to competing in with the jump rope club...and I shake. I listen to other moms complain about planning and driving and busyness and stress and I have to walk away. I hear about all of the exciting things the kids will be doing in fifth grade and I ache. I see Bailey's teammates headed to swimming or tennis practice and it knocks the wind from my lungs. May is usually such a happy time for children. There are fun things at school, yearbooks, awards ceremonies, good times with friends...and she has missed so many of them - her eyes sad, but her emotion is disappearing, because there have been so many disappointments...the pain throbs. I know that this will fade over time, but never completely. For now, it feels like a fresh wound is ripped open each time I am confronted by something from our old life.
Two months ago, we had no idea how our lives were about to change. We had healthy kids and we were ready to wind down the school year for a fun and active summer. Swimming, a trip to the beach, a wedding in Vail. As a parent, I think you always have some sense that things can change immediately, that accidents can happen...that life is fragile. But did we ever suspect that our athletic child would be stricken with a rare bone cancer that would threaten both her life and her ability to do everything she loved? Did it ever occur to us that Bailey would be one of only 400 children this year who will be diagnosed with osteosarcoma?
No.
Never.
Never ever.
I am not used to having a sick child. I am not used to having a limited child. I not used to having a child whose body will look permanently different as a result of this cancer. This is all new. In speaking with others who have suffered, I am realizing that traveling between the two worlds is something with which most everyone struggles. Being in either world is tolerable, but jumping back and forth from one to the other, though unavoidable, is extremely uncomfortable and emotionally distressing. I am saddened that I was not sensitive to this before...as I watched others hurt. I am learning so much and I am greatly humbled. Maybe some day I will be on the other side of this and I will be writing posts with answers...with neat little wrap ups about walking through a valley. I'm not sure. I can't even imagine being in that place. The immediate future holds only more wrestling, more hard, more trying to sort through our new reality. I pray that in time, God allows me to rise above this...to grow in faith and wisdom. I suspect for now, that I have much more time to spend wandering in this desert.
No one likes hospitals. The only thing good that happens in a hospital is that new babies are born, and if you aren't visiting for that blessed event, then any other trip stinks. They are filled with white walls and small windows. The environment is cold and mechanical...machines buzzing and beeping and whirring at all times. Outside the day is bright and sunny and the world bustles by. Inside, it is dark and quiet and time stands still. Childrens' hospitals are even worse...especially in the cancer wing. You walk the halls past pictures of precious and smiling bald children...and only now do I have a sense of the war those sweet faces have waged. It is miserable. Still, what we are finding when you have a child with cancer, is that there is some comfort in the hospital. A bit of routine to it. A bit of familiarity. You get to know the nurses. All of the families there have been baptized by fire into a club that no one wants or expects to join. We understand the brutalities of chemo, the grueling nature of the schedule...of juggling life and cancer, of being consumed by fear, of horrible choices. You don't feel alone...and if you are in the hospital, you are fighting the illness...and so it is one of the few times when you have some sense of empowerment because you are actively battling the disease. It is still stark and sterile, but it is a community and there are few distractions. You can set aside life, withdraw a bit...and focus on the fight.
But then there is the other world. Home. Obviously our preference for places to be. When we are in the house with just us, life is relatively normal. Although normal looks a bit different...as we have a child with bone cancer who has lost all of her hair and can no longer run around outside with her siblings, climb into her brand new loft bed or go to school with her friends...but even with all of that - home still feels good. Any mama knows that there is something about having all of her babies under the same roof. If we could simply hide in our house, home would be amazing. In our little cocoon, it is easy to remain relatively free from pitty parties. But with home, comes the "doing of life" - our old life - and jumping back into the crazy suburban routine is hard. It makes the pain feel new again, fresh...almost as raw as it was in the first few weeks. The typical things of life, even though I know they are important...feel ridiculous, excruciating, superfluous. I wish I were mature enough, wise enough...to rise above - to embrace our journey as one designed specifically for us (because it is) and be thankful for it...to refrain from looking around or back. But I am not that woman...at least not yet. I am praying that I will get there, but I feel that peace might still be quite far off. I see Bailey's friends run into school on two healthy legs, and it hurts. I get an e-mail about summer basketball camp and my heart sinks. I see information about the talent show, which Bailey was looking forward to competing in with the jump rope club...and I shake. I listen to other moms complain about planning and driving and busyness and stress and I have to walk away. I hear about all of the exciting things the kids will be doing in fifth grade and I ache. I see Bailey's teammates headed to swimming or tennis practice and it knocks the wind from my lungs. May is usually such a happy time for children. There are fun things at school, yearbooks, awards ceremonies, good times with friends...and she has missed so many of them - her eyes sad, but her emotion is disappearing, because there have been so many disappointments...the pain throbs. I know that this will fade over time, but never completely. For now, it feels like a fresh wound is ripped open each time I am confronted by something from our old life.
Two months ago, we had no idea how our lives were about to change. We had healthy kids and we were ready to wind down the school year for a fun and active summer. Swimming, a trip to the beach, a wedding in Vail. As a parent, I think you always have some sense that things can change immediately, that accidents can happen...that life is fragile. But did we ever suspect that our athletic child would be stricken with a rare bone cancer that would threaten both her life and her ability to do everything she loved? Did it ever occur to us that Bailey would be one of only 400 children this year who will be diagnosed with osteosarcoma?
No.
Never.
Never ever.
I am not used to having a sick child. I am not used to having a limited child. I not used to having a child whose body will look permanently different as a result of this cancer. This is all new. In speaking with others who have suffered, I am realizing that traveling between the two worlds is something with which most everyone struggles. Being in either world is tolerable, but jumping back and forth from one to the other, though unavoidable, is extremely uncomfortable and emotionally distressing. I am saddened that I was not sensitive to this before...as I watched others hurt. I am learning so much and I am greatly humbled. Maybe some day I will be on the other side of this and I will be writing posts with answers...with neat little wrap ups about walking through a valley. I'm not sure. I can't even imagine being in that place. The immediate future holds only more wrestling, more hard, more trying to sort through our new reality. I pray that in time, God allows me to rise above this...to grow in faith and wisdom. I suspect for now, that I have much more time to spend wandering in this desert.
5.05.2012
Thankful for Saturday
A wonderful Saturday was had by our little clan today. In our life B.C. (before cancer), Saturdays would breeze by...full and busy...hardly noticed. Games and sports and chores and projects. A crazy day with no time for small things...the little blessings. Cancer changes that. It changes everything. But I have written much of sorrow lately...and I know that there will be many more dark, lonely nights that will spawn angst-filled posts about the ugly state of my soul. So for today, I want to rest in the moment. To celebrate the joy. To be grateful.
Dear Lord,
Today, I am thankful...
For rest in my own bed, not on a hospital futon.
For a morning with no alarm clocks.
For a leisurely Saturday breakfast, made by my groom.
For warm weather, summer quickly approaching.
For ignoring chores.
For ignoring chores.
For time at the swimming pool.
For dinner as a family.
For laughing and playing and siblings loving.
For sleeping under one roof.
Together. Finally.
Just our six.
Thank You.
5.03.2012
How To Serve Those Who Are Suffering (Part I)
So, since this whole heavy-duty suffering business is new to me, there are some things I am learning about how to minister to those who are in the midst of a life crisis. I've decided I'm going to keep a bit of a running list, and then when I have a few items, I will post them...hoping that it will be helpful to others. I'm actually feeling a bit ashamed about how I thought I was ministering to people before...I really had no clue. I feel as if I need to go back and apologize to everyone because I was so terrible at it. But until you have walked through something like this, it is difficult to know what to say or do for someone who has been unwillingly jolted into a significant life change. I certainly cannot speak for everyone, as I'm sure people receive this type of love differently (depending on their "love language")...this is simply our perspective. I'm certain that it changes somewhat depending on the type of suffering too...a death, a serious illness, a loss of mobility...each case probably has specific needs. We have only been at this for a few months, so this list is in no way exhaustive. It is just some initial things we've noticed and I will add to it periodically as I learn more:
1) The number one rule is not to ask, "What can I do?" People will either a) be afraid to ask for help or b) as we have found in our case, not even really know what they need or what to ask for. If you see a need or have an idea and you know it won't be more of an inconvenience than a help, just do it.
2) Food is always good. People may say that they don't want a meal, but in the midst of a life crisis, grocery shopping and meal preparation become necessities of life that are too difficult to maintain. It doesn't always have to be a meal either...fridges and pantries are usually pretty bare...so staples such bread, fruit, lunch meat, snacks, treats, paper towels, paper plates, and toilet paper are all welcomed. Anything that saves the person an extra errand or two is usually appreciated. Most people don't want to chit chat, plan when they will be home or have to relay updates multiple times a day, so a cooler or drop area somewhere in the front of the house is a good way to avoid that.
3) House projects are good. In our case, we have someone who cleans our house and does our yard...but I can only imagine how stressful those things would be if you didn't. Someone did plant flowers for us because it was that time of year, and it was a huge blessing. Laundry is also an option, although I haven't figured out a way to outsource that yet. I don't even know whose socks are whose myself...so I'm not sure how someone else could fold our wash.
4) We don't have a pet, but someone mentioned to me that they had a person in charge of their dog when they were gone. The friend had a key and anytime this family was at the hospital, the friend covered all doggie duties (and doodies!). Obviously, this would be a better job for a nearby neighbor than someone who didn't live close by.
5) Cards, e-mails, texts and phone calls are alright as long as a response is not necessary. It is wonderfully encouraging to know that people are thinking about you and praying for you...but returning messages, writing thank you notes, etc....are impossible things when you are simply struggling to find the strength to run your family.
6) Gifts are good, but can get overwhelming. Spacing them out is a nice idea. Also, if there are other kids in the home, keep that in mind. It is similar to a new baby and siblings...kids are very self-centered and if one child is getting all of the attention it can cause issues. Also, don't expect someone who is either ill or grieving to be overly expressive in their gratitude for a gift or kind gesture. Deep down they do appreciate it, but many times they are just trying to make it through the day and enthusiasm may be tough to generate. (We have found this with Bailey...people will do very nice things for her and she seems unenthusiastic, but honestly, she was feeling so poorly that she just could not generate any excitement even though she was very appreciative).
7) Try not to do things that cause the receiver to have to juggle their schedule. "I need to come by at this time because I have this and this and this to do." The sufferer does not need one more thing to worry about, person to work around or line item on the day's itinerary.
8) Helping with the kids...planning fun outings, having them over for play-dates...things that distract kids as "fun" things to do rather than making them feel shuffled around because mom and dad are consumed with something else.
9) Hospital and home visits are intensely tricky and dependent upon the situation. We have found that when our "patient" is feeling decent and only in the hospital riding out the time for a fever or waiting for a drug to clear, then she enjoys visitors because they make the day pass more quickly. When she is feeling badly, then she wants the room dark and quiet and she doesn't want to have to sit and chit chat. She is only ten...so I can't speak for adults, although I would imagine it is much the same.
10) Read their Caring Bridge page or whatever website they are using to update people with information. Initially, when the pain is great, a little piece of you dies inside each time you tell the story. In the long term, when the sufferer sees you they will want to talk about anything other than the sorrow. If you are informed, then you will allow them time to just be normal, rather than forcing them to relive the sadness multiple times a day. This applies to family members too...do not assume that because you are close family that you deserve updates...see reasoning above. Also, leave notes as you read updates. They are so encouraging...it can feel very lonely during these times of grief...it is nice to know you are not walking alone...that people are following your journey.
A couple of other random things that don't necessarily fit...but I think are important to know:
1) While people may be going through an intensely sad and dramatic life change, they do not necessarily always want to have to talk about or acknowledge this. If you see someone crying and obviously suffering, then it is probably alright to meet emotion with emotion. However, if they appear happy and smiling...they may be trying to "forget" and just be normal for a bit. In that case it is much better to offer a hug and a, "Hey. It is great to see you!" Rather than the head tilt, sad eyes and, "Ohhhh...how ARE you?" Sometimes we want to get away and not think about it. That is the beauty of a Caring Bridge site...that you don't have to update each different person you see. (Yes, this is similar to #10 above...it is an important one though.)
2) As you go out and about your life, consider that some of the people you encounter are undergoing immense suffering. The week Bailey was diagnosed, but before she started treatment, we were out running errands and it was awful. I was in a fog and small talk was excruciating. Bailey and I were in the Gap and she had her leg brace on and was in a wheel chair, and there was a mom and her daughter in front of us, and the mom was peppering us with questions. I'm sure she was just being chatty, but they did not pick up on our cues that it really wasn't something we wanted to talk about. "What did she do to her leg? Is it a sports injury? How? Do you need surgery? When? What kind of surgery?" "Oh, we did something like that and you'll be back to normal in no time." She asked at least ten questions, Bailey was looking at me with eyes begging for it to stop. I wanted to scream, "She has CANCER and it will never be back to normal!" Of course this poor woman didn't know that, but she also didn't read body language well either. It just reminded me that I don't always know what someone is going through and I need to be aware of that as I meet people throughout my day.
3) A serious health crisis is all-consuming. While it may feel like a friend or family member has fallen off the face of the earth, really they are simply retreating and using all of their resources to keep their family functioning and moving forward. They have no strength for anything extra or to carry any other wounded soldiers out of the jungle. They are doing all they can to keep their little clan going. Between hospital stays and running a home, there is no time or energy left for anything that falls outside of the parameters of the immediate family.
1) The number one rule is not to ask, "What can I do?" People will either a) be afraid to ask for help or b) as we have found in our case, not even really know what they need or what to ask for. If you see a need or have an idea and you know it won't be more of an inconvenience than a help, just do it.
2) Food is always good. People may say that they don't want a meal, but in the midst of a life crisis, grocery shopping and meal preparation become necessities of life that are too difficult to maintain. It doesn't always have to be a meal either...fridges and pantries are usually pretty bare...so staples such bread, fruit, lunch meat, snacks, treats, paper towels, paper plates, and toilet paper are all welcomed. Anything that saves the person an extra errand or two is usually appreciated. Most people don't want to chit chat, plan when they will be home or have to relay updates multiple times a day, so a cooler or drop area somewhere in the front of the house is a good way to avoid that.
3) House projects are good. In our case, we have someone who cleans our house and does our yard...but I can only imagine how stressful those things would be if you didn't. Someone did plant flowers for us because it was that time of year, and it was a huge blessing. Laundry is also an option, although I haven't figured out a way to outsource that yet. I don't even know whose socks are whose myself...so I'm not sure how someone else could fold our wash.
4) We don't have a pet, but someone mentioned to me that they had a person in charge of their dog when they were gone. The friend had a key and anytime this family was at the hospital, the friend covered all doggie duties (and doodies!). Obviously, this would be a better job for a nearby neighbor than someone who didn't live close by.
5) Cards, e-mails, texts and phone calls are alright as long as a response is not necessary. It is wonderfully encouraging to know that people are thinking about you and praying for you...but returning messages, writing thank you notes, etc....are impossible things when you are simply struggling to find the strength to run your family.
6) Gifts are good, but can get overwhelming. Spacing them out is a nice idea. Also, if there are other kids in the home, keep that in mind. It is similar to a new baby and siblings...kids are very self-centered and if one child is getting all of the attention it can cause issues. Also, don't expect someone who is either ill or grieving to be overly expressive in their gratitude for a gift or kind gesture. Deep down they do appreciate it, but many times they are just trying to make it through the day and enthusiasm may be tough to generate. (We have found this with Bailey...people will do very nice things for her and she seems unenthusiastic, but honestly, she was feeling so poorly that she just could not generate any excitement even though she was very appreciative).
7) Try not to do things that cause the receiver to have to juggle their schedule. "I need to come by at this time because I have this and this and this to do." The sufferer does not need one more thing to worry about, person to work around or line item on the day's itinerary.
8) Helping with the kids...planning fun outings, having them over for play-dates...things that distract kids as "fun" things to do rather than making them feel shuffled around because mom and dad are consumed with something else.
9) Hospital and home visits are intensely tricky and dependent upon the situation. We have found that when our "patient" is feeling decent and only in the hospital riding out the time for a fever or waiting for a drug to clear, then she enjoys visitors because they make the day pass more quickly. When she is feeling badly, then she wants the room dark and quiet and she doesn't want to have to sit and chit chat. She is only ten...so I can't speak for adults, although I would imagine it is much the same.
10) Read their Caring Bridge page or whatever website they are using to update people with information. Initially, when the pain is great, a little piece of you dies inside each time you tell the story. In the long term, when the sufferer sees you they will want to talk about anything other than the sorrow. If you are informed, then you will allow them time to just be normal, rather than forcing them to relive the sadness multiple times a day. This applies to family members too...do not assume that because you are close family that you deserve updates...see reasoning above. Also, leave notes as you read updates. They are so encouraging...it can feel very lonely during these times of grief...it is nice to know you are not walking alone...that people are following your journey.
A couple of other random things that don't necessarily fit...but I think are important to know:
1) While people may be going through an intensely sad and dramatic life change, they do not necessarily always want to have to talk about or acknowledge this. If you see someone crying and obviously suffering, then it is probably alright to meet emotion with emotion. However, if they appear happy and smiling...they may be trying to "forget" and just be normal for a bit. In that case it is much better to offer a hug and a, "Hey. It is great to see you!" Rather than the head tilt, sad eyes and, "Ohhhh...how ARE you?" Sometimes we want to get away and not think about it. That is the beauty of a Caring Bridge site...that you don't have to update each different person you see. (Yes, this is similar to #10 above...it is an important one though.)
2) As you go out and about your life, consider that some of the people you encounter are undergoing immense suffering. The week Bailey was diagnosed, but before she started treatment, we were out running errands and it was awful. I was in a fog and small talk was excruciating. Bailey and I were in the Gap and she had her leg brace on and was in a wheel chair, and there was a mom and her daughter in front of us, and the mom was peppering us with questions. I'm sure she was just being chatty, but they did not pick up on our cues that it really wasn't something we wanted to talk about. "What did she do to her leg? Is it a sports injury? How? Do you need surgery? When? What kind of surgery?" "Oh, we did something like that and you'll be back to normal in no time." She asked at least ten questions, Bailey was looking at me with eyes begging for it to stop. I wanted to scream, "She has CANCER and it will never be back to normal!" Of course this poor woman didn't know that, but she also didn't read body language well either. It just reminded me that I don't always know what someone is going through and I need to be aware of that as I meet people throughout my day.
3) A serious health crisis is all-consuming. While it may feel like a friend or family member has fallen off the face of the earth, really they are simply retreating and using all of their resources to keep their family functioning and moving forward. They have no strength for anything extra or to carry any other wounded soldiers out of the jungle. They are doing all they can to keep their little clan going. Between hospital stays and running a home, there is no time or energy left for anything that falls outside of the parameters of the immediate family.
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