The ribbon, this month, is gold

September is pediatric cancer awareness month. 

Didn't know?  Don't feel bad.  I have two kids who have had 3 cancers between them, and I didn't know.  But then again, I am aware of pediatric cancer every day.  I don't need to set aside the thirty days in September to think about it.  We live with pediatric cancer like some hideous knickknack that we cannot ever part with.  I am grateful for the opportunity for this monstrosity to collect dust over the next 6 weeks, whereupon I hope to put it back on the shelf until after Christmas.  Very, very grateful.

But, as many of my friends either anticipate (or dread) the pulling out of the pink ribbons next month, this month's color is yellow. (Didn't know that either?  No worries!)  Dan made a fabulous banner on his facebook page, one that I only barely possess the technological wherewithal to steal.  But I did-so, take that technology!

 

 

 

 

Hollywood and our One Hip Wonder... 

 

Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience.  We absolutely never say the phrase "What are the odds?" in this house.  With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires. 

 

However, there are some things that statistics can help illuminate.  Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.   

 

While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers.  Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids.  They get the 'hand me down drugs' of the adult cancer world.  In 20 years, only one drug has been developed for kids with cancer.

 

I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit.   Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances.  Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs.  I am not at all interested in more kids getting cancer.  Naturally.

 

But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer.  Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country.  Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group.  The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.

 

I was asked by a friend about how to best support pediatric cancer.  There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research.  These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.

 

If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)

 

If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself.  (I like to think of them as the 'mutual fund' of pediatric research.)  Here are a few: 

 

Flashes of Hope                             http://www.flashesofhope.org/

Kick It:For Children's Cancer        http://www.kick-it.org/

St. Baldrick's                                  http://www.stbaldricks.org/

Alex's Lemonade Stand                 http://www.alexslemonade.org/

 

We are personally associated with the sister charities Flashes of Hope and Kick It.  Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland.  Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause.  This year, our family's story will be featured at the event, in an effort to raise some more research dollars. 

 

Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game.  It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May.  This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name.  Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds.  We are so grateful for those dollars being directed in such a personally meaningful way.

 

The CDC lists cancer as the 2nd leading cause of death of children, after accidents.  We are hoping to push that way down the list.  No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out.  We are working on helping to secure the resources for those bright minds, right now. 

 

Any help you would like to offer would be appreciated.

 

 

 

 

 

Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

http://www.cleveland.com/brecksville/index.ssf/2013/06/brecksville-broadview_heights_262.html

 

 

And my world goes 'round again....

So, how am I?  How was the surgery?  How is the recovery?  Is it what I expected?

I am just now writing after a week...that should be your first clue.

But, I suppose that I should begin with my expectations.  Based on my research, and advice from friends, I really didn't know what exactly to expect, because as we know in this house, all too well, "Everyone is different...it all depends."  Some warned me to be prepared for 2 days to generally recover, some 2 weeks.   All, however, advised me to keep ahead of the pain with narcotics.  Okey dokey.

I sort of expected that I would feel pretty crappy over the weekend, and I was not disappointed.  I have had four children, and have bounced back well from each of these deliveries, so I thought that I would recover from this pretty quickly with this too.  I gave myself until Monday for drugs. 

Monday, I took less drugs, but as I got tired, and started feeling crappy, I took another Percocet and went to bed, which seemed like a sound decision.  I was still sore, but my incisions were looking good...the bruises had become green and yellow, a vast improvement over the black that they were. I knew that each day would be better. This part was pretty much to my expectations.

My concern though, was the headaches that I kept getting.  Over the weekend, I thought maybe I was getting a sinus infection. As the week began with the same headache, I became concerned that it was perhaps narcotic withdrawal. I should mention that despite the fact that this is more than the 10th surgery in 2 years in this household, we do not have a lot of experience with narcotics.  My kids just don't take them outside of the hospital setting. Hell, Brent hardly takes them outside of the OR anymore, tough cookie that he is.

My sister actually said to me in the hospital, "Don't try to be Brent...take the drugs!" Okey dokey.

But these screaming headaches, that Tylenol didn't begin to touch, this is not what Percocet was prescribed for.  By today, I called my OB's office, assured them that I had no concerns about infection, explained that my abdominal tenderness was improving, but inquired about the headaches.  I was hurting pretty bad.  Like an ice pick in the eyeball kind of bad.  I thought about amputation...at the neck.

My choices per my OB were:

1. Go to the ER for evaluation. (ummm...I cannot drive yet because of that surgery thing last week, and I was fairly certain that I was not looking an aneurism, or brain tumor, although with LFS, weird things do happen.  For example, I personally know 2 different people who are left with half a pancreas.  TWO. How many do you know? With LFS, nothing is beyond the realm of possibility, and I would not presume to know the limits of Gods sense of irony with regard to our family.)

2.  I could wait 2 hours and then take 2 more Percocet, to try to knock out the headache completely, as though it were a migraine. Stay in the dark, keep it quiet.  I have never had migraines, but thought this might be hormone, or lack of hormone driven change.  Also a contender.

3. Or, I could try coffee.

Clouds part, the sun shines, angels sing in jubilation.

If my brain were firing on all synapses, I would have figured this out sooner.  I drink coffee every day. Truth be told, quite a bit of coffee.  I hadn't had but half a cup since last Thursday because my stomach is queasy, which coffee would aggravate. And, I keep taking drugs that make me only want to nap, because my head hurts so much.  You are noticing the vicious cycle too?

I brewed up a pot, took some Zofran, washed it down with a cup of Joe, and Bob's your uncle.  I feel like a million bucks.  It wasn't narcotic withdrawal, or surgery, but caffeine withdrawal that was kicking my butt.  Yes, I am done with the Percocet now.  :)

All of the questions I had to answer about vitamins, prior experience with anesthesia, health history, cancer...blah, blah...nothing about my caffeine intake, which is probably not medically relevant generally speaking.  But, I think that the last time I 'quit' coffee was when I was pregnant with Olivia.  She is 5.  Both she and coffee make my world go 'round.

So, the moral of the story, boys and girls, is that you should call your doc right away if things seem at all wonky.

And drink lots of coffee. 




I

Making room for the good: Olivia's first day of school

It was raining. 

Thundering, actually, which is the only thing that Olivia fears, a fact that I had dutifully noted on the “all about me form” that I filled out for her kindergarten teacher. 

But today was the first day of school for my youngest daughter, and the excitement in her as she bounded down the stairs before 7am, negated all anxiety about the thunder.  She dressed and ate breakfast, brushed her teeth and I helped her with her hair.  She put her lunch in her backpack and put on the sign that Kindergarteners wear around their neck on the bus to help direct them like the precious package that they in fact are. (There is a return address label on her, incidentally) Then, we waited nearly an hour for the time when the bus was due to arrive, with varying degrees of patience.

Olivia announced that she would not, of course, bring her special green blanket. 

She loves an umbrella, but dislikes thunder.  Today, she was not even a little troubled by the thunder boomers.  We grabbed an umbrella and walked to the bus stop where she sang, rather loudly “The sun will come out, tomorrow!”  A neighbor closed her window as she belted out the finale.  Probably because it is chilly today.

Then the bus rumbled down the street, and she was gone.

 

 

It is raining.

But I have a cup of coffee and a quiet moment before I continue to clean out the basement, discarding things that are broken and passing along toys that are no longer used.  I have neither had the time nor the inclination to evaluate the detritus of our lives.  The answer for nearly two years, when asked about an item has been “put it down in the basement and I will deal with it later.”  Well, later is now. 

I am happy to report that Brent has been cleared from Infectious Disease.  Neither he, nor Lauren, will return to hospital until mid October for scans, a break not experienced here in nearly two years.  So, I have both the time and the inclination now, to deal with those mundane, everyday things.  It is a luxury that I have not enjoyed, and somehow, I am looking forward to it.

There is something nostalgic about parting with items that are worn, and no longer useful.  There is a longing in a way, for the time past, when life was maybe simpler, or had more possibilities.  Despite this, I have always been pretty good about finding new homes for things that we no longer use, clothing we have outgrown.  And, I have always felt lighter after such purges.  I never have regrets, and feel that the process makes room for more useful things that are suitable for our current lives. 

You cannot embrace the present, if your hands are clinging to the past.

It is still raining, but harder.

Olivia is off on her new adventure, excited about the possibility of making new friends.  While there is part of me that regrets the details of her preschool years, it being a picture far different from the one that I would have painted for her, she is a happy child.  And I am grateful for this.  There is part of me that worries about the future, the thunder, and her fear. (As a very loud clap of thunder crashes outside my window, making me jump!)  She will be fine.

So, today I will make room for the good things in our current life by passing along the relics of our former one.  I am sure that there will be some conflicting emotions in this, sorting through our past, leaving open spaces, spaces which initially feel empty, but make room for our future. 

And on Thursday, I will continue to do the same sort of thing, but on a more personal level.  I will have surgery, ironically enough, exactly two years to the day of Brent’s diagnosis.  I feel that it is a fitting end to this chapter in our lives.  The kids are cancer free, and I will have finished everything that I can for my geneticist. 

I am making room for the good that is to come.  Because, as Olivia so musically declared, "The sun will come out Tomorrow!"

Today, I will pour myself another cup of coffee and dive in.  I will wait to hear of Livvy's new and exciting experience when the bus returns this afternoon, regardless of the weather.  Arms open to her, and to our future.

Half my life

My husband is pretty terrific.  I say all the time that I definitely “married up.”  We had our anniversary earlier this month, and marked 18 years.  I was not feeling well that night, so we postponed having a date.  Most things that we have postponed over the past two years have simply been tabled, so I am really glad that we had the opportunity to go out, just the two of us, for the evening last night.

Generally, we would have gone out to dinner at a nice restaurant, or tried to get away for the weekend.  With four children, it is a challenge to take a trip together.  Getting away has been a challenge for the last 15 years, but more so now than ever because the kid’s activities and other considerations are so much greater.

Dan decided to go ‘old school’ and take me back to where it all began.  We met in college and so, he took me back to Kent.   Anticipating  feeling old, and perhaps a little out of place, Dan said that he was fairly sure that he would not get into a fight, but if some young punk asked if he was at the May 4^th shooting in 1970, all bets were off.  I might have mentioned that I married Dan because he makes me laugh.

There is much about the campus that has changed, as you might imagine.  It is much prettier than I remember.  There are buildings that have been constructed in the past 20 years, which are an asset to the university.  Likely, there are students there who cannot conceive of a time when they weren’t there, filling up those spaces that were empty when Dan and I were young. 

They reworked the plaza in front of the student center (I remember it being a really horrible space) and when we were there, they had a free concert-big band.  We sat, enjoyed the music and the lovely weather and had the opportunity to talk, which was much better than the wine that they served.  It was really wonderful.

We walked the campus, recalling the beginnings of our life together.  It was different back then, and much, much simpler.  What we had imagined for our lives was not this, certainly, because who would dream this up?  (I joke that if I were ever to write a book about it, they might shelve it among the fiction titles) 

We went into town, and stopped at a couple of our old haunts, those that are still in business. At ‘The Loft,’ we walked in and I was shocked at how nothing had changed.  Sitting at the bar, I was bewildered at how we were transported back twenty years.  We used to go there to have three dollar pizza and beer on a cheap date.   Dan teased that he feared ordering one now, because the crowd might go silent, music off, all eyes turned on him….before they burst into laughter, because maybe they haven’t served pizza in a decade.  He ordered two beers instead.

Looking around, just taken with it all, I exclaimed, “Nothing has changed!”

Putting down the two drafts, the bartender says, “That will be seven dollars.”

Dan turned to me, laughing.  Some things had changed.

 

We stopped for another drink at a place that was spatially familiar, but the name was off.  We couldn’t remember what it had been called.  I asked the bartender if he knew what it had been called before it was Dominick’s.  Eyes bugging, he said that it was called the Town Tavern, like 22 years ago.  Then, shaking his head, he said that he was aging himself more than us.  Yeah, we are all getting old.

We stopped to get something to eat at Rays.  We talked about our future, and the medical things that we need to finish up in the next couple of weeks:  The very last hoops to jump through before we are on ‘LFS maintenance,’ as I like to call the fishing expedition that we do every 3 months.  I am anxious to finish these last things, and be cleared for a while.  Dan and I never talked about multiple geneticists in Rays before, pretty certain of that. 

Our lives have changed over the years, and like the university campus, the empty spaces have been filled. We have built this life and built our family which, admittedly, has not always been easy. However, no large project advances without a problem.  As an architect, Dan has taken particular pride in those that are 'on time and under budget."  I am pretty sure that we are neither of those at this point.  I do feel that a good product results from creative solutions.  I am grateful for Dan's creativity in our family.

I do not imagine that I will ever end up in academia as I had once planned.  Of our plans, I often say “We plan, and God laughs.”  With Dan next to me, at least God isn’t the only one laughing, which makes the hard parts and the detours easier to deal with. 

What I can say with certainty though, it that all these years later, and despite all of the challenges, this life is better, and far more beautiful than the one I started with.  I have now spent half my life with Dan.  I credit him with the improvement.

Picking Good Doctors

Conversations with friends recently reminded me of this piece that I wrote nearly 6 months ago.  Interesting, as we have very recently bid Dr. Getty goodbye, and we are relying again on Dr. Gingo.  The sentiments are constant, however.

We have been blessed in this life with good doctors.   Some we looked for.  Some simply fell into our path.   The vast majority of folks in our medical journey have been terrific, although, as in life, there will always be some people that rub you the wrong way. 

How do you pick a good doctor? 

When I first moved back to Ohio, Dan and I were looking to start our family and I needed an OB.  I was young and healthy, and had no primary care doctor to ask for a referral.  So, I asked around at the restaurant where I worked, and was referred to a gentleman who was very nice, by a coworker, who incidentally, had no children. 

Dan and I were excited about starting our family, and as a first time mother, I did exactly what I was told, came to my appointments as scheduled.  It was all going along swimmingly.

After one episode of false labor (first time mom, you don’t know what to expect or what “real” labor is), my OB had me in for another ‘weigh-and-measure’ appointment.  He checked me, and I was 3.5 cm.   Nervous, he recommended that I be admitted and induced.   Okey-dokey. 

So, petocin (a drug which I now have evil feelings about) was ordered up.  Progress was rapidly achieved, but I honestly feel that this man had dinner plans that he did not want to be late for.  Because, he personally turned up the petocin, at a point when I had no breaks whatsoever between contractions. (My extensive subsequent experience in hospitals has shown that doctors do not in fact operate IV pumps, never touching them, except on very rare occasion, to silence them)    Epidural (too late), and Alex was born in 3 ½ hours, making me officially a mom.  He was nearly dropped (Dan still talks about this man’s very small hands, understanding that Alex was a slippery little bugger, but suggested that my next OB have a catcher’s mitt)  While I was thrilled to be a mom, I thought that maybe another doctor might make the next experience a bit better.

So, I needed to find another doctor.  My sister had 4 children, so I used her OB for Brent’s delivery.  I felt that I could trust her experience, and her opinion.  I loved this doctor.  Brent was brought into this world sans petocin (per my request which was both heard, and honored) in an hour and a half.  He was born in time to watch a World Series game with Dan, who teasingly complains to this day about how rough it was for him to stand so long, and that no one offered to give him a foot massage.   (Ahem…)   Dr. El-Dabh was terrific.

But our insurance then changed, and to go out of network for another delivery with him as my doctor was cost prohibitive.  I really considered it though.  Looking again…

I went to a smallish Christmas party with a printout of my OB options.  I asked the ladies there to cross off any docs that they did not like (be warned if you try this, there are passionate feelings among women about such things) and to circle the good docs. I asked questions about the circled docs.  Wait time? (OB offices are prone to occasional delays, given the unpredictable nature of birthing, but some are notoriously over booked, and I had 2 toddlers to consider)  Efficient staff?  Does the doc take time with you or rush through?  Confidence in him?

Among those circled I found Dr. Anthony Gingo, who has been an angel whispering in my ear, for over 10 years now.  I have been grateful ever since, for that last minute Christmas inspiration, grabbing the list and asking ladies that I didn’t even know so well at the time, their opinion on a pretty personal matter. 

I cannot exaggerate the positive impact that this man has had on my family and the trust that I place in him.  His guidance has served me well each and every time it has been offered.  I credit him with Lauren’s life, both on the day she was born (cord around her neck) as well as when she was sick the first time, alerting me of the need to “find answers” which helped me push a little, when we were initially told by another doctor to just ‘come back in 6 months’ for a re-evaluation. As it turned out, she had a rare unpredictable cancer, which would not have been discovered for another 6 months, with who knows what results, except for Dr. Gingo’s words banging around in my head.

I am grateful for his care of me, for respecting my wishes in difficult situations, of his attention to my family and his consideration of my daughter’s future.  He has been invaluable for thinking ahead and preparing us for possibilities we would rather not consider and hopefully preventing catastrophes, unlikely for the average patient, but worthy of very serious consideration for both Lauren and for me.  I have hardly been the routine or average patient.  He is an exceptional doctor, so I feel that we are a good match.  I am so grateful for his guidance.

When your child has cancer, it is not like you can bring a list to a Christmas party and expect that anyone can help you, or offer an opinion.  (When your child has cancer, you haven’t time for socializing so it is just as well)  You land where you land, shell shocked and trusting that doctors in general, and the oncologists in particular, are much smarter than you are, and that they can fix it. But they are human, fallible and sometimes just not a good fit, despite their exemplary medical qualifications.

Sprinkled across our medical story are a few doctors that I cannot say offered unreasonable opinions, or came to conclusions that were unsound, but they were just not a good fit for us.  This was not simply because they raised concerns or possibilities that we did not like, or arrived with recommendations that we found disagreeable (nearly all doctors we spoke with had big problems to report, and unpleasant recommendations) There was almost always a manner whereby these few doctors communicated with us, or failed to communicate, that we found very difficult. 

So, the euphemism in our family is “not our favorite” for docs that are not a good fit for us.  Only occasionally, have they irritated us enough to garner a private nickname, like Dr. Doom-and-Gloom, or Dr. Chicken Little (They sky was always falling for that one).  But these people have earned the respect of the title of “Dr.” even if the surname is slightly altered to more accurately reflect the quirk of personality that rubs us the wrong way. And, these have always been nicknames that help remind Dan and I (or very recently, our children) that they offer one possibility, have their own perspective, and are entirely human.  The ‘Dr.’ part is to remind ourselves that they are truly trying to look out for us using their experience and education, despite how it feels.

I contrast this handful of doctors who focused perhaps too narrowly on one aspect of a problem or failed to communicate altogether, with the vast majority of docs who have meshed well with us, been compassionate and thoughtful in the way that they spoke to us while presenting the unfortunate result, recommendation or information that they were required to report. The best doctors took the time to explain their thoughts and concerns.  They also listened to our concerns and answered our questions.

I think of the affection that Brent has for Dr. Getty, a man who explained to him why it was prudent to amputate his leg, and how challenge ridden a reconstruction of the hip would be.  He led with “I have options for you, and I am sorry to say, unfortunately, you aren’t going to like any of them.”  Honest, but compassionate. I believe that the most important thing he did, was to strongly encourage us to seek other opinions, preparing us for those conversations with other doctors, and ensuring that we were best informed about perhaps the most significant decision of Brent’s cancer journey.  He has been unwavering in his support of our decision, despite the obvious restrictions in the ways that he can help us at this point. 

Perhaps because all of our options were bad, the negative consequences of our choice (the persistent concern and worry about this hip construction) are more easily tolerated.  But somehow, I don’t think that Getty is an “I told you so” kind of guy.  He is far too humble, and respectful of both his patient, who, by definition is in a very bad situation, and of the disease, which is unpredictable, in spite of his vast experience with it. His part in our journey might not be direct, having never actually performed surgery on Brent, but could hardly be considered tangential. 

Besides, he is just a really great guy.

This humility is something that I respect in a doctor (coupled, of course, with extensive medical knowledge).  One of Brent’s oncologist said to me once, that he doesn’t cure, that he doesn’t have the answers.  He merely assists and guides.  There is so much mystery, so much uncertainty.  And he volunteered that he couldn’t say what makes the difference from one outcome to another. This might make someone else crazy and think “why am I here if you don’t really have answers?” But for me, I think that this acknowledges the limitations of scientific understanding, and recognizes the exceedingly complex nature of human beings.  And, it may have been the first that I heard a doctor openly refer to the philosophical and spiritual aspects of our being human and its influence on medicine, which I think has its place along with science. 

But that is just me, and maybe someone else might develop a nickname for these same doctors, to demonstrate that they were “not a fit” for their family.  

We have been blessed with so many ‘fits.’

Brent the Great, the One Hip Wonder

 

 

 

I am not terribly tech savvy. But, as there was something graphic that I wanted to share (thus saving several thousand words, if my math is right), I have been required to learn something that most would find most basic...importing photos.  Normally, I would just haul my husband in, who is my tech guy for such things, and creative in ways that I am not.  For example, I will not likely sweat, picking the font that I use, which I am told, matters.  Heck, I cannot figure out how to clean up the text on this blog, in order to have a consistent size of text from post to post.   I am sure that Dan would work at it, and make it pretty for me if I asked, but this is supposed to be my deal. I should really grow up and learn something.  I will get there, eventually.

So, I was going through our photos, which incidentally, live on our hard drive and in some place called 'The Cloud.'  I will not dazzle you with my knowledge of how these things work, because I am a little fuzzy on the details.  Just know that like so many others out there, we take photos and they generally remain in digital form.  We almost never print them out.  But, I was looking for examples that will illustrate the design process for Brent's logo.  Because if you didn't know him, it wouldn't make any sense. 

It was hard, not simply in a technical way, to look over these pictures, and to see where we have been.

This first photo was taken on the last day of school in June of 2011 at our neighborhood bonfire, which is a tradition held dear in this household.  In order to properly kick off summer, the kids go down to the park and burn their old homework assignments while the parents grill off hotdogs and such, a wonderful way to catch up with other families.  My kids save their school papers all year in anticipation of this day.  Their "burn pile" is pretty big.  There is joy in burning that stuff...victory and satisfaction, all of which is quite evident in Brent's pose.  Lauren isn't unhappy either.

 

 

 

 

I look at photos now differently than I did before.  This is a great photo, just showing the delight of some children..."No more school! No more books! No more teacher's dirty looks!"  (Actually, they enjoy school and the teachers are pretty terrific)  But, I look at this now with the knowledge of what is coming in a few short weeks for Brent, and in 6 months for Lauren.  I am a little haunted.  Can't help it.

 

 

Brent was diagnosed the first week of school that fall, and our world fell apart.  Brent was incredible, I have to say, making the best of every situation, and finding joy in the small things.  Getting discharged after another week of chemo was always cause for jubilation.  This photo was taken a few weeks into treatment, less than 3 months after the one above.

 

 

I was telling my mom, that going through the photos was shocking, in a way. Even when Brent's hair all fell out, practically overnight, for his birthday (yeah, that was fabulous timing), the physical changes were small, and we saw him daily. He was still Brent.  He continued to celebrate discharge, or as we often called it, "parole."

 

 

 

 

 

 

 

Christmas.  Lauren had brain surgery. We traveled to NYC to see about a surgery that might spare Brent's leg. While there, we visited a huge Toys R Us, which was something to see, and apparently, to celebrate.

 

 

 

Brent had his 'giant surgery,' in NYC.  And 2 follow up surgeries.  And more chemo. Time passed. The seasons changed. There is a lot covered by these spare sentences.  

 

Before Brent finished with chemo, which is an experience so isolating that I struggle to express it, Brent wanted to see his friends. It was beautiful spring day, one weekend off, so we went to a soccer game, to see his former team play. I remember him crutching down the hill to the field that afternoon (which is steep enough to be a challenge, even without the mobility issues that he had) and I worried a bit as I watched, but you have to let them stretch their wings. 

 

Brent had the best day, sitting on the bench with his team and at the end, we took this photo, which still brings tears to my eyes.  The soccer club, along with the school and the community here, have been so amazingly supportive of our family.

 

 

 

 

 

After chemo was finished, Brent had physical therapy, to try to strengthen his leg, and learn how to walk on his new hip.  He returned to school, and we tried to get back to a normal life.  We were offered tickets to go as a family to a Browns game by Angela, the Child life specialist, with other families from the oncology floor.  We had a fabulous day, enjoying some beautiful weather, doing something that normal families do, and watching the Browns actually win.  Believe me when I say that a win for the Browns is cause to celebrate, nearly as much as the day Brent finished chemo. 

 

This time Alex struck the pose:

 

 

Brent had an awesome year at school, despite missing the month of January for another jaunt to NYC for surgery to do an muscle flap.  But, as I mentioned, May was a little rough when we learned about the donor bone disintegrating, and that he might have cancer again. When we found out that the pathology was clean and that there were orthopedic options involving limb salvage, we certainly celebrated.  We were cautioned that it would not be easy, that there would be at least 2 surgeries as part of the reconstruction. 

 

Always a surprise, but a pleasant one this time, Dr. Healey told us after June's surgery that the ligaments holding Brent's femur to the pelvic bones were pretty tight and might be sufficient to walk on, even without an iliac wing.  Unsure of what Dr. Healey might do leading into the second (really, 6th) surgery, Brent asked me, if he was left with what is known as a 'flail hip,' could we call him the "One Hip Wonder?"  He was giggling like nobody's business.  But that is just how we roll here.

 

Back in New York in July, after it was determined that we would not put in any hardware, Brent and Dan came up with the following, using an image, serendipitously discovered on the internet, and the magic of photo shop:

 

 





 

 

Cancer can take his hip bone, but it cannot take his humor (or his humerus-ha!). It may prevent him from playing soccer, but it cannot stop his determination...whatever he decides to do in this life. In doing this logo, he is defining himself, rather than being defined by cancer.  It is both empowering and powerful.

 

 

 

When we had scans earlier this month, Brent and I went to the Cleveland Museum of Art on a break between appointments.  We got the call while we were there from the hospital telling us that the scans were clean.  I snapped this photo at the lagoon.  His self-appointed title is "Brent the Great, the One Hip Wonder."  Given what he has gone through in the past two years, he can be called whatever he wants.  I like it though.  I kinda like the logo, too.

 

 

 

 

Alice and Dorothy

 

I have tried clicking my heels on more than one occasion, wishing ourselves a return trip home, channeling Dorothy and those fancy kicks of hers.  There is something about these two sitting down together that just tickled me when I saw it on FB.  (And if Dorothy is any kind of friend at all, there is something stronger than tea in Alice's cup.)

 

 

That is no lie.

 

 

I have often used the phrase "going down the rabbit hole" to refer to the whole cancer experience because it is just so otherworldly, not unlike poor Alice's journey.  Suddenly there are strange cakes to eat, bottles of stuff to drink and everyone seems to be speaking in an odd language that only somewhat resembles English.  The rules are upside down. Nothing seems to make sense. Your body is not your own.  Everything is foreign.  Surreal.

 

We too, have seen some weird shit.

 

A friend of mine has a son going through treatment right now, and mentioned that they worried that he might need a transfusion, which he has never had.  I vaguely remember the first time Brent needed transfused, our worry and concern, having never done something like that before.  He has had nearly 40 transfusions to date.  We are very grateful for the donors, but not remotely anxious about the actual transfusion, when such an occasion arises.  We have spent far too much time 'Through the Looking Glass,' if such a thing has become routine. 

 

We were told at one point to be alert for the symptoms of narcotic withdrawal on our 12 year old, several weeks after his 18 hour surgery. "Umm..can you tell me what they are?" having no practical experience with narcotics, much less the associated problems with weaning your child off of them. We do not bat an eye at a 5 hour surgery, either, considering one of such length a "middle of the road procedure."

 

We wound our way through genetics. I have thought at length about myself at the earliest stages of my own development, where somehow, I went rogue in the most unusual of ways. I have talked to my kids from a young age about how some decisions are critical and can have a huge impact on their life.  What was my microscopic 64-cell self thinking?  Or was it much later? Regardless, that had some impact, that genetic 'improvisation.'   As a mosaic, I am a freak, even among mutants.

 

I was always a strong believer in nurture over nature.  Somehow, I must concede that nature scored one in this skirmish. 

 

Brent experienced hyperbaric oxygen treatments, without ever visiting Michael Jackson's Neverland Ranch, which as I understand it, is what many people in the general public associate with HBO.  Yes, it is a real treatment.  With insurance codes and everything.

 

I took my 10 year old to my OB/GYN to have her lopsided ovaries checked out today. (all good there, btw)  It was absurd trying to fill out the electronic patient questionnaire.  There were not nearly enough spaces to explain Lauren's cancer history, and far too many other questions, all of which should have been covered with the blanket observation that "She is 10," Unfortunately, this was not one of the options to select from.  Most 10 year olds don't go, of course.

 

We have been down the rabbit hole for a long time, and have begun to peek our heads out a bit, which is kind of an adjustment, and rather bewildering actually, being exposed to sunlight after so long.  We are blinking and rubbing our eyes, looking at the great outdoors.  Dan says that the weather has been 68 degrees and fluorescent for 2 years now.

 

 

Our lives were hit by Dorothy's tornado. "It's a twister! It's a twister!"   Now, we are sweeping up the rubble, literal and figurative.  I have stored away IV supplies worthy of a small ER, and wound care supplies I hope to never need again.  I have shut down my kitchen pharmacy, at long last.  We get to take a 2 month hiatus from pediatric oncology...scans are not scheduled until mid October. 

 

Dan and I have looked around at what remains, and are grateful.  Sure, there are things that we need to realign, things that took a back burner, low on the priority list for too long.  But at the end of the day, we are poking our heads out of the rabbit hole as a family.  There are some scrapes and bruises, naturally, but we are all here.  This, we do not take for granted. 

 

There is a saying that a person doesn't get cancer, but a family does.  I am pretty sure they didn't mean this particular genetic problem, whereby a family literally gets cancer, but rather that cancer affects all members of a family.  I think that we are doing OK overall. We would prefer less screen time for the kids (both on electronic devises, as well as in hospital), but what parent out there doesn't?  Probably, we will adjust to 'new normal' just fine.

 

Everyone who does this cancer detour has a different experience.  But it universally crazy. Oz, Wonderland, Lilliput... Hades... When Bizarre-o-world begins to seem normal, you know it is time for a break.  We were due for some time away, and I am very happy to bid farewell to the Wizard and check out of Hotel Wonderland. 

 

We know that we are likely to be back at some point, given the LFS.  Dan says, if it is 2 months or 20 years (I vote for 20 years-longer, actually) we should spend our time in the meanwhile living, with joy and happiness.  No argument from me, with the addition of vigilance.  Joy, happiness and vigilance.  

  

And of course, I now have Grace Slick singing in my head: 

     

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice, when she's ten feet tall

And if you go chasing rabbits
And you know you're going to fall
Tell 'em a hookah smoking caterpillar
Has given you the call
To call Alice, when she was just small

When the men on the chessboard get up
And tell you where to go
And you've just had some kind of mushroom
And your mind is moving low
Go ask Alice, I think she'll know

When logic and proportion have fallen sloppy dead
And the white knight is talking backwards
And the red queen's off with her head
Remember what the dormouse said
Feed your head, feed your head

Read more: Jefferson Airplane - White Rabbit Lyrics | MetroLyrics

 

 

HA!  And now you do too.  ;)

 

Feed your head!