Wedged in the middle

Yesterday was a big day for us Ramers.  Brent completed chemo one year ago, which is one tick of the cancer clock.  There was no cake.  We didn’t celebrate, unless you consider playing a game of Catan as a family a celebration (I kind of do).   It was, however, something that I was aware of, one of those dates that stick in your head.  It is one of the days that seem to matter.  We have rather a lot of those days and dates those that give me pause.  Some people call them “cancerversaries.”  Diagnosis, end of treatment, surgical removal of a tumor…they are important steps in the process.  But there is some controversy, according to some, in marking them, in celebrating.  Should we?

I think that on the one hand, it is important to see how far we have come, and to reflect.  Has the last year been easy?  Not remotely.  Brent had physical therapy.  He has already had 3 surgeries with another one scheduled in less than 2 weeks.  He faced the strong suspicion of his cancers return and the possibility of losing his leg…again.  He missed 62 days of school.  So, no, I would not characterize it as easy.

But was it easier than the year before?  Most certainly.   The previous year Brent missed all but nine days or so of school, spent more days at the hospital than at home, had 4 surgeries, countless scans, procedures and the horrible beast that we call chemo to wrestle, as he did simultaneous battle with cancer itself.   And as a family, we had that small matter of Lauren’s brain tumor to contend with.   So, I will enthusiastically go with our vastly improved, cancer free trend of the past 365 days.

In short, we have come a long way, and are most grateful to be cancer free:  Brent for one year and Lauren for 18 months.  I am grateful, and would celebrate the milestone in my mind. But I do not want to live 'there,' tied to our difficult past.  

 

Today, we celebrated the baptism of my nephew, and enjoyed brunch with extended family.  We had a quiet afternoon, reading outdoors after a nap (And we sit here laughing at Alex as he sings over the roar of the lawn mower… who is laughing at himself, now that he is caught).  It is summertime, and we are together which I consider a blessing on the sheer face of it.  The nice weather today, the opportunity to be outdoors and to have a bonfire is an extra bonus.   I swear that I don’t need much. A nap is always a good start these days, because I am so tired. 

Tomorrow is a new day.  I understand that they all are.  But Lauren has scans, so it threatens to be another day or date that will matter, worthy of remembering.  It is potentially wedged between the denouement of the past year and a half, and the beginning of a fresh nightmare.  This is the anxiety, the reality that we must manage.  And for the most part we have. 

I should point out that “we” means Dan and me.  I do not notice any concern in the kids at all.  They are kids, and this has become normal, these ‘field trips’ to Rainbow Babies and Children’s Hospital, our upcoming ‘vacation’ in the Big Apple. 

This may not be the way that I grew up, but it is normal to them.  So I try to adopt their attitude and pray that it remains simple and that our future holds many more opportunities for Olivia to squeal with delight over a package of marshmallows.  It doesn’t get better than that.  And this is the day I currently have, one that calls for pointers on the proper toasting of a marshmallow.  

I am going to get to that important life lesson...right now.

Mother-of-four day, average pediatric cancer day, or LFS day?

Some days are 'normal mother of four' days.  Some days are 'normal cancer' days.  Some days are LFS days:  We ratchet it up a notch for those.

So, we are blessedly, and most gratefully, home.  And we have no immediate oncological worries.  This makes it, upon waking, quite possible for it to be the first sort of day:  a 'normal mother of four' kind of day.

But, as I would point out, today I woke at 4:30 am...with the vague understanding that something was amiss.  I walked into Brent's room, and realized immediately that I did not flush his line and unhook him at 1am,  like I was supposed to.  This was because, as I soon realized, I neglected to plug in my phone... which was obviously dead, failing to alert me as it faithfully does nine time as day to what I must do antibiotic wise.

Ahhh!   I unhook, flush, and heparin... only to reflush, and hook him up a mere 2 1/2 hours later, with the new bag of vanco.  Such is my life.

This now qualifies as a cancer day, because while this is not active cancer nonsense (Thanks be to God!!), it does, however count as cancer aftermath.  I want points...although we recognize that they are not so different: parent points, spouse points, kid points...and we actively tease that they are all redeemable for nothing in our house.  Collect all you would like!    :)

So, I kept the Vancomyacin train running on time. Kudos to me!  I can collect a bazillion points!

But, of course, it cannot end there.  We aren't those sort of underachievers.

Lauren has scans on Monday, July 8th.  I will most gratuitously borrow from one of my brilliant LFS friends and leave the annotation completely to her wishes:  LFS could stand for 'Living For a Season.'  We do quarterly scans that make living a seasonal affirmation...and God willing, one that we Ramers might continue without chemo, radiation, surgery etc...   Our 'season,' well... it is upon us.

This would make it an LFS day alone.  But we do not simply indulge in such episodic anxiety.  We Ramers need to add something more. So, on Friday, I got the call... from Make a Wish.

Make a Wish is a wonderful organization.   I have a whole bunch of text that I put together after Brent did his MAW a few weeks ago.  I haven't had the time to put it together with the photos (shame on me!!) but, even without this, let me just say that they do an amazing job with kids in a tough situations.  Lauren, with the whole 'Brain Tumor thing,' qualifies as one in a tough situation, without being at all understated.   We do a lot of understated in our house, for the record. 

Because failing to do so, we would be absolutely certifiable.

So,  Lauren wished to be in a movie, when she met with her wish granters several months back.  She is very Hollywood, comfortable speaking in public, and something of a ham.  Just saying.  So, I think this is a fabulous wish for her. The mere thought of this would make me personally throw up, but to each to their own.  And, as this is about Lauren, she would love to be in a movie.  We were advised that such a wish could take some time, based on character type, and movie available etc. etc.  Lauren was good with this.  She, as I have mentioned, is a pretty patient girl.

So, we received the call on Friday, that there was an opportunity for Lauren.  It was not in California, as she had requested, but NYC.  I had goose bumps.  Had it been in in California, I would have shot it down outright, knowing of our pending surgical plans on a different coast.

"Really?  When?"

" 'On set' July 21st"

I didn't know what to say.  We would already be there for Brent's surgery on the 18th.  I should remind you that we have no idea what is involved for Brent (a 3 hour surgery or 12?), or how long he will be at MSKCC. (we are perpetually surprised)  We are generally comfortable with the 'leap of Healey faith.'  It has really worked for us so far. But in LFS situations, this ambiguity adds an additional challenge. 

Do we commit to such an opportunity for Lauren?  Should we?  We do not know if Dr. Healey intends to do reconstruction or not.  It sort of makes a difference.  And not just for Brent.  Further, it is un-askable at this point, of Dr. Healey.  We recognize that it is a 'game time' decision on his part, and the outcome is utterly and completely uncertain.  Damn you, crystal ball! 

I deferred to Lauren.  When she got back from oncology camp (huge hit, btw!)  I told her about the call, and the opportunity.  As well as the limitations.  She immediately said that she didn't think it would be right for her to be having fun making a movie, if it was at all possible that Brent would be in a hospital...and couldn't enjoy it with her.  She has a pretty strong sense of family, that one.  She wasn't interested in theatre camp either, if it meant being here in Brecksville, without the rest of the Ramers.  Her preference was to be together in NYC, with no 'special' fun planned for her.

This possibility was something that we had planned for back when we had the understanding that Brent would be a minimum of 6 weeks in NYC.  For the second surgery, we thought that Dan would bring out the rest of the 'Nation,' and we would be together for a period of time, giving Brent an emotional boost for the strong finish.  He got a reprieve, in coming home for a few weeks in the middle, but the benefit of being together, for Brent, for the rest...it is palpable.  We got this time together, like the three (or 6) musketeers....all for one and one for all!

There is part of me, that understands the logistical challenges (or nightmares) of this solution, of taking 4 kids to NYC for an indeterminate amount of time.   They are not small.  But when you consider the benefit, well, it is not even a close call.  We will do what we must, that which benefits most.  Together, well that seems to benefit most.   So, we will make it happen, somehow.

Make a Wish, well, it should be simple.  Your child wishes for something, and because they have a life-threatening challenge like cancer, this fabulous organization tries to make it happen. With LFS, even the beautiful, kind and wonderful things...well, they are more complicated.  I am blessed that my daughter recognizes our challenges as a family...feels them, and responds to them appropriately.  And my hope is that she has a wonderful wish, when the time is right, for her and for our family. 

May next week's scans bring the blessing of another season to plan such things.  And to wish.  And to be together as a family. 

I do not take such things for granted.  It has already been proven that we cannot afford to.  But maybe that is the point, or the emphasis, in the blessing.

Much love!
Ann

A week full of thoughts of surgery and support

We find ourselves quite unexpectedly at home.  Brent's first surgery went so surprisingly well that they decided that he might spend the next couple of weeks in Ohio, rather than the Big Apple.  There is an abundance of blessings to be found in this statement.  

I am responsible for giving him IV antibiotic three times a day (with a 2 hour drip for each dose) until we return for his next surgery.  I am praying that this antibiotic regimen clears the infection.  None of his cultures grew anything, despite the graft being obviously infected, so we are hoping that this measure of going broad in spectrum, as well as deep in coverage (6 weeks) will wipe it out.  Whatever 'it' is, which is unknowable at this point.

I finally sorted out things with MSKCC, and our plan it to return to NYC in a bit over 2 weeks for the definitive surgery.  It is unclear at this point, exactly what form that will take, but the surprises have been good for the past month.  We are praying that they continue to be good.

As I waited for the appropriate time to hook Brent up to his IV (or unhook him...I forget which) on Tuesday night, I checked in with my LFS friends online.  The Internet is a blessing, especially for support in something like Li-Fraumeni.  With an estimated total of 400 people in the US with this genetic disorder, I would not have likely had the opportunity to meet anyone like us, with the same challenges and similar worries.  We would be essentially alone.

I remember when we initially learned about LFS, back when Lauren was first sick, some 8 years ago now, I had read about families with LFS in medical journals, but those were written for clinical use. There are no names, of course, and details about the patients are limited to age, sex, diagnosis and outcome.  The stories of these families are devastating from a medical perspective.  It was a very tough read, with little encouragement to be found, especially with the worry that we might be just such a family.  There was no sense of warmth, of hope, of connection.  It was written for a researcher, not a patient... or a parent.

When we discovered nearly two years ago that we in fact had the p53 mutation, initially, I went back to reading articles in medical journals, when I had the time. Fortunately, (??! ...that doesn't seem quite right!) I was pretty busy just helping Brent through chemo and then surgery...and follow up chemo, dealing with Lauren's brain tumor (which by comparison, seems like an acute issue)  and generally trying to keep the wheels from falling off.  I didn't have much time to seek further information or support...or offer it.

The omnipresence of Facebook and social media has been something that I have been very slow to embrace.  I am not sure why some folks find it necessary to share photos of their lunch...when it is utterly mundane fare from Taco Bell. But, it is not all bad.  In the last 6 months I have stumbled into a private support group of similar "mutants" as we refer to ourselves.  And consequently, this rather Amish girl has become grateful to Mark Zuckerburg, for indirectly making possible these connections with fellow LFS patients and, by extension, this support.  

Talk among my LFS friends on this particular evening centered on the various reconstruction techniques and options after a mastectomy, with much advice being offered.  I must confess that the technical talk is all a bit beyond me, having zero experience with breast cancer, and in all hope, I should like to keep it that way.  But several things struck me.  First, should I ever find myself in Alabama, for example, I absolutely know who I would stop and have a drink with, knowing that all of my cancer and genetic jokes would be appreciated.  These ladies have a wicked sense of humor.

Second, if I found myself in California, I know who I would rely on for advice on hospitals or doctors. This group has a wealth of information and medical experience (so wish that were not the case). But, they are willing to share their personal trials in very generous ways, in order to help others find the solution that is right for them.  

 

Reconstruction, for example, while it might seem like an obvious choice if available, might not be right for some.  Or the timing might not work, given recovery requirements.  How it is achieved technically, if chosen, is varied as well...and makes a big difference.  These considerations can be sorted through, with folks who have a practical understanding of what it all means.  That sort of advice is invaluable.

With LFS, we have a host of considerations that others do not, and likely cannot fathom...in medical treatment, in family dynamics, in finances, insurance, life perspective...the ways that cancer invades your life is not so different from the way it can take over your body.  I really try to keep it in check (umm...as I blather on and on about it here).  I clearly have varying degrees of success with this. These ladies have similar understanding of this effort at balance, and I am grateful to them for their openness and honesty about all of the consequences.

Besides, in having them scattered across the world means that at 3 am, should I find myself awake and worried about something, someone is likely to be awake somewhere.  And support, understanding and reassurance is easier to reach for, when you know that you are not disturbing someone's sleep.  I have been glad on more than one occasion, that Hawaii has a 5 hour time difference.

I woke up Wednesday morning to hang Brent's antibiotic, thinking about a dear friend who was to have surgery that day.  I was hoping that she had clean margins and was praying for clear nodes. This was for her second episode of breast cancer, not relapse, but rather a different kind of breast cancer than her original, nearly 10 years ago.  Double primary...it makes me want to swear. Kind of a lot.  And she does not have LFS, incidentally, not that it even matters.

My own surgery had been scheduled for Thursday (as if I could afford the time for such recovery) I cancelled it when we thought that we would be in NYC for the summer.  My ovaries will keep for a bit longer, and my geneticist currently has some other tissue to work with for a while. I hope to keep her busy this fall with more samples, and come up with some answers for what I should be doing. 

But presently, I am just very happy to be back home.  I am glad to be with my family, and to step away from the hospital scene, as much as is possible, with a fridge stocked with bags of Vancomycin rather than bottles of summer Corona.  I am trying to have normal conversations, about other peoples vacations, or children's activities, remodeling projects, because our take on these subjects is a bit different:  We vacation at Ronald McDonald House, my daughter is at oncology camp this week, and our remodeling project this summer is in my son's hip. 

I find that I make OR reservations more often than dinner reservations these days.

We will get closer to normal, but just not this summer, apparently.

Living among strangers

We have vacationed with other families that we know.  It is different than going out to dinner together or going to a party at their home.  It is far more intimate, seeing friends first thing in the morning, before anyone has had the benefit of coffee, or a hairbrush.  But if you choose to vacation together, you at least have some idea of what you are getting into.  

In this parallel universe we have joined, it is interesting, living among strangers.  Cancer is an equal opportunity disease. There is a cross section of society on a cancer floor.  You encounter all sorts of people, like spending the afternoon at the BMV.  

But then you bunk with them, in all your glory.  And theirs.  

As an institution, hospitals are in the business of healing, of helping folks return to health.  Part  of that involves tapping into the support of family, recognizing that our emotional health partners with physical health.  So, in addition to meeting all sorts of people, you meet all sorts of families.  And, as I like to say, 'families are messy,' which is a euphemism for "there are idiots in the world and someone has to be related to them."  

From my observations, tricky family dynamics are not suddenly simplified by stressful circumstances...they are magnified.  Cancer is pretty darn stressful, and like holidays, a reason for families to be thrust together.  Here is the gasoline...where is the fire?

In a hospital, they are forced to serve as a maitre d' putting patients, and by extension, their families in very close proximity to one another.  There are a host of variables that must be considered...the sex of the patient, the infectious considerations of both patients, their age, their likely duration of stay...  I imagine it is like the bride and groom trying to plan the seating arrangement for their wedding, but considering only certain qualities of the guest, like whether they select beef or fish.  

I did not pre-arrange seating at our wedding, and discovered at the reception that an uncle of mine who incidentally, had extracted his own teeth, was seated next to our dentist, who enjoys near iconic status in our family, evidenced by the fact that he attended my wedding. (premarital counseling in our family includes some very sticky questions...do you intend to convert to Dr. Hummel? If not, how do you intend to handle the dental upbringing of the children?)  I can only imagine what sort of conversations these two struck up.  But, even if it was less than ideal, it was only one night, one meal, and at least there was wine.

Point being, that in hospital, when all sorts get thrown together in a rather intimate and stressful situation, separated only by a curtain, it is less than ideal...and unfortunately, can last a bit longer than one evening.  The food is nothing to write home about.  I still cannot find the wine.  

Add to that the myriad of variables regarding something as simple, and essential to healing as how you best sleep... (Lights on, lights off, tv on, music, what time do you retire for the evening...what time, given the choice, do you get up...) To the extent that your needs, and those of your child are in conflict with the needs of your neighbor, there is some requirement for compromise and consideration. Lets just say that some folks have a better understanding of the concept of consideration and are more amenable to compromise than others.

Add in the various reasons for being hospitalized...fever, chemo, surgery...and things get even more more complicated.  You may need to encourage your child to eat a lot, after surgery in order to heal, but the child next to you is nauseous from chemo.  Or your child is NPO, as Brent currently is, waiting for a procedure, and the boy next door is eating his second meal of the day, smells of forbidden food wafting over on our side of the room.  Your kid needs to sack out, beat up from a long night of chemo, and the teenager next to him, only in for a neutropenic fever, is trying desperately to connect with friends, skyping loudly.  It is a challenge under the best of circumstances. Pediatric oncology seldom offers ideal circumstances.

Over the past 2 years, we have had many opportunities to room with others (ha!) and I have generally been surprised with how well this is managed, and how most families have been kind and courteous. I hope that we have been the same.

There have been some striking and memorable exceptions, however.  The curtain may offer some visual privacy, but there is no acoustic equivalent.  We are the involuntary witness, 24/7, of the toughest times for other families, seeing relationships at their most strained and stressed...  It isn't always pretty, this forced voyeurism.  It can be awkward, trying not to hear the intimate details of the patient's treatment (what is the point of signing reams of HIPPA forms in this situation?) or pretending that you haven't heard the heated argument between stressed out family members.

In order to mitigate my frustration with people at such times, I remind myself that by virtue of being on this floor, on pediatric oncology, these folks are having a tough time, are under stress, and warrant special consideration.  I try to forget the fact that we also find ourselves on this same floor.  

And whenever possible, we try to laugh.  Brent, upon remembering a particularly difficult match, joked that getting C-diff was worth it, because he had to be moved for infectious control, and fortunately remained in a single. He was quarantined into some precious privacy, away from the challenge of dealing with others.

We start with compassion, but laughter is our fall back position.  Sometimes, with a bit of snark.

Going to New York

I went to sleep last night, listening to the sound of a steady rain and the feel of the summer air coming through the window.  I woke to the rustling of the birds, a chickadee trill, the stirrings of the waking forest.  Then came the suburban sounds...a neighbors dog barking a friendly greeting, a car passing the house. This was followed by the more domestic sounds as Cinder jumps up onto the girls bed.  They murmur at first, then quietly talk and giggle together down the hall.  I listen to the sound of Dan's breathing as he sleeps next to me.  All distinctly the sounds of this place, of these people.  Of home.  In the stillness, I soak it all in and know that it is beautiful, and a blessing.  

I get up to start the coffee, put the breakfast in the oven, and finish the preparations for our departure.  All the while, I wonder what it will be like when we return.  When will we return?  My mental calendar officially ends on Thursday, a phenomenon that I privately call "scan day syndrome."  I find that the uncertainty that the future holds, while familiar, is something I am starting to get a bit anxious about again, mostly because I am no longer so terribly busy organizing things. It is upon us now, with nothing left to buffer the space.

I had a date with Lauren yesterday.  When we first told her about having Li-Fraumeni Syndrome and the scans and screening that she, Brent (and likely I) would have to do in order to find cancer early, I assured her that while we had to do hard, unpleasant things, we would do something special as well...like go to a movie or get our nails done, as a special treat to make up for it.  In the year and a half since I made that promise, the only special treat she got for doing scans... was brain surgery.  I am not exactly stellar as a parent in this regard.

She is amazingly patient, this daughter of mine.  And uncomplaining, mature beyond her years.  But, I don't want to push my luck.  And I really wanted have a date with her, to touch base uninterrupted, and spend time seeing how she really is, before I ditch her again.  I ditched her just weeks after that 'special treat' brain surgery that I mentioned...for Brent to have his first surgery in New York, thus avoiding amputation.  We were gone nearly 2 months. I am heading there again, this time knowing now that it will be a long time. 

We chat about the next several weeks as she gets her pedicure, so grown up.  Even though she is only 10, I ask her input about how she feels about scans...wait for me to return, or go with someone else?  We talk about oncology camp, and how much fun that will be, even without Brent...she is outgoing and confident.  I have no worries about her, but I think I will email to confirm which familiar faces will be there.  I know that Ceci, her nurse, will be there, and she will look out for her. We are so fortunate in this.

She selects my polish color, a bold pink.  I would never have picked this color, but I tell her that it would be a splash of Hollywood in the generally bland pallate of Sloan Kettering.  It would remind me of her, and that she would be with me.  Lauren really likes this.  We decide to do this again, and make it our quarterly date.  I feel like she is going to be fine.

Olivia will be fine as well.  We have prepared, talked about the plan.   We will all talk on the computer.  She will come visit in a few weeks to her 'birthday hospital' and we will have a date... All hurt of separation was forgiven with the revelation that New York City has a playground, and my promise to her that I will take her to the playground when she visits.  She can wear my perfume and smell like me, if she misses me.   That is all she wants.  It is simple when you are 5.  She is a pretty happy kid.

Alex will be busy with his sisters, and no doubt socializing as teenagers are prone to do.  He will enjoy visiting with my sister who is going to spend time at the house while Dan is away. We have neighbors who have kindly volunteered to take him to swim team.  If he is active, he is fine. He will be pretty active.

Leaving is still hard, but after having a nice breakfast together, it is time.  We go.  The lilacs are about finished blooming.

.

.

.

I pick up the drive through the mountains of Pennsylvania, which is 300 brutal miles of nothingness, while Dan dozes and Brent is watching a movie.  We have the strangest weather pattern, and seem to be skirting the edge of a front, because we have rain, and dark November-feeling clouds, but we frequently open up to blue and sunshine.  

I see a rainbow, which makes me happy, thinking about a friend in Hawaii, who frequently talks about them.  I have never been to Hawaii, but I suspect that rainbows are more common there with the more frequent rains.  I see another rainbow, a partial one, seeming to fall from a cloud.  It is almost a stylized rainbow, cartoon like.  I am amazed, delighted.  

Every turn brings another rainbow...to the right...right in front of us....double rainbow... To the left....interrupted rainbow...  They are everywhere, a frenzy of rainbows, for five solid hours.  As we approach NYC, I am positively giggling, and Dan and Brent are annoyed with me for my constant exclamations, because I just cannot help myself.  Dan said that we were driving through a rainbow factory...I like to think of it as a rainbow escort, wrapped up in promise and reassurance.  I finally said that the only thing that would turn off this parade of rainbows was the sun setting.

And as we breeze through the Lincoln Tunnel, with no wait, the reflection of the sunset on the clouds over the city is gorgeous.  Traffic is light, relatively speaking and we make the drive across Manhattan with ease.  As I pull up to Ronald McDonald House, someone else pulls out, leaving street parking for us right in front, which is the equivalent of finding a $100 bill on the sidewalk, because we will not have to move it to the garage until Thursday.  I feel giddy and reassured as we check in.

The travel here was easy, and I am hopeful that the rest of it will be blessed as well, full of encouragement, beauty, promise and hope.  

Only one problem, thank God

As I picked up my phone in the car yesterday, I saw the (212) area code, recognizing that Sloan Kettering was on the other end.  I answered, stomach dropping, and heard a familiar voice, Dr. Healey's nurse. The pathology was in, she said, and it was negative for malignancies.  She wanted to call me right away to put my mind at ease, which was an act of kindness that I will always remember with deep gratitude.

I could hardly speak, and only managed a tearful thumbs up to Lauren who sat next to me in a state of confusion, bordering on concern, as I blubbered incoherently.  Lauren has been with me before, when I fielded tough news.  She is an old soul, and mature far beyond her years. I am very grateful for the universal message that thumbs up provides, because I couldn't manage much else.

I immediately called Dan who was relieved beyond measure.  Then I called Brent, who gave an understated "woo-hoo" as though I said that we were having pizza for dinner. Really. He was more enthusiastic about hearing that I was taking Lauren for a date, than the fact that he didn't have cancer.  "You haven't had time together in a long time!  Enjoy!"

So, we went into the restaurant to have a date.  I was trying to see how she is doing with what Brent faces. I apparently will have to have another date with her, because while we had a joyful meal together, interrupted by many happy, relieved texts from friends and family, and my own emotional rollercoaster, I did not get a good gauge on where she is in all of this.

Lauren and Brent had cancer at the same time, which is long story for another post.  In short, she had a golf ball sized brain tumor removed here in Ohio only weeks before Brent had his entire right pelvis removed in New York. The abrupt change in his situation this week, including concern about his cancers return, and the likelihood of amputation, well, that is a bit much for any 10 year old to process. But, I wonder if she additionally worries about her own cancer status. It would be surprising if she didn't.

Brent is managing amazingly well with all that he faces.  He wants to focus on the good things the next few weeks will bring before surgery...the Kick-it for Cancer fundraising events that his school has every year to support pediatric cancer research, the end of school bonfire, his Make a Wish.  He says that he does not want to talk or think too much about surgery. I would worry about this, concerned that he is not preparing himself, but this is how he has always done things, focusing on the good that today offers and dealing with the difficulties when he must, regardless of the challenge: chemo, surgery, distant hospitalization...

In addition to checking in with Lauren and preparing Brent, we have the other kids to think about. Alex is a very physical, athletic kid.  He and Brent, only 2 years apart, have always been close.  They played soccer together and rough and tumbled outdoors their whole lives.  Over the last year and a half, Alex has struggled with the change in their relationship, in the ways that they can relate.  He wants to fix it, to fix Brent.  He wishes to return to how it was before cancer.  I wish I could do this as well, for both of my sons. 

Brent is happy for Alex and has a very generous spirit. I have never seen any jealousy or resentment from him about Alex's ability to continue along a path that isn't as physically restricted as his own. While Brent hasn't gone to but a couple of Alex's games, this is mostly because sitting so long is uncomfortable for him physically.  I think Brent will continue to adapt well emotionally, but this is going to be a very tough thing for Alex to come to terms with.  I recognize how strange that seems.

Olivia, well, I do not know what to do to prepare her. At 5, I think that this would best wait until we are much closer to surgery.  But I am at a loss at how to make all of this right for any of our kids when it is so difficult for us to wrap our own heads around.  I do not know exactly how to help them.  Even if there was a manual for raising kids, I doubt that there would be a chapter that covers this.

While I still feel the heavy weight of our limited orthopedic options for Brent, without the oncology bearing down on us, it doesn't seem quite so overwhelming.  It is unbelievably hard, but not soul crushing.  I will go with "not soul crushing," and be grateful.

Very, very grateful.

And try to find our way to the next step. As serious as the problem is, and as difficult the solutions, we know that we are blessed in a dozen different ways, starting with the clean pathology.

Brent had cried out in Dr. Healey's office that it wasn't fair, which really struck me.  This is a statement that he has made very, very rarely, in the course of this 21 month ordeal. (I believe only twice)  All of the chemo, all of the surgery, all of the rehab...and he has complained very little.  I think he recognizes that while it cancer is not fair, this is what is.  Fairness is immaterial, so why dwell on it?

So we try to focus on what we are given, rather than what we have lost.  What we are given, the things that we count among our blessings, might not occur to others.  It is probably a given that your children to not have cancer. I name this daily as a blessing, but likely take other things for granted.

We are all different.  We all have blessings, and challenges, each unique. I think that our happiness stems from where our focus lay. (lie? lays? lies?--I can never get that one right)  You understand what I am mean, crappy grammar aside. 

Not to be all rainbows and unicorns, but I am going to focus on what we have been given, as we move past the shock of all of this. Like Brent, I am not going to dwell on the immaterial, unchangeable facts, but pick a solution and march on.

That is my plan at least.

Walking in Manhattan

After starting the linens in the washing machine, I thought that I would let Brent sleep a bit longer at Ronald McDonald House. (One advantage of him finding sleep on the couch more comfortable than on the bed, is that I do not need to wake him to do the 'exit laundry'). I decided to return the wheelchair to Memorial Sloan Kettering that we borrowed after Brent's needle biopsy yesterday.  I threw my handbag into the empty wheelchair and set off, alone with my thoughts in the city.

This has been an emotional trip, and I am finally alone, without things that I actively need to do like when we were in the hospital.  There is anonymity in the city, especially one this large, and with the understanding that I do not know anyone here.  There is real temptation in screaming right there in the street...wailing to the heavens.  A plea for some mercy, a frustrated cry for insight, a bit of anger at God.  I think that it is ok to be angry with God once in a while.  I do not rage outwardly as I walk, but I am grieving.

My son Brent, who only a day or two ago (could that possibly be right?) expressed to me how he couldn't wait to be able to run again, how much he is looking forward to the freedom to play with Olivia in that physical way almost required of 5 year olds, will never be able to walk normally. We learned that he is in all likelihood, going to lose his leg, after a long year and a half of surgeries and rehab in an effort to save it.  

And that may not be the bad news.  We are now concerned about local relapse of his cancer.

For months, there has been starts and stops with physical therapy.  Concern and frustration nagged at me about the fact that we have not managed to establish a head of steam in his progress.  But, it seemed last week that we might have just turned a corner.  His wound was improving, and I was going to set up PT again for him, beginning tomorrow, upon our return to Ohio.  We turned a second corner here in New York however, when routine X-ray showed that the donor bone is dissolving.

I never saw that coming.

So now, the worry that I have had about infection for a year, has been transformed into my wish.  My fervent prayer is that we have been tamping down an infection for months, despite massive doses of antibiotics and antifungals, and that the infection has damaged this donor bone, degrading it to the point that it must be removed.  That is my new hope.

From an orthopedic perspective, the problem is severe, and the solutions are all unappealing.  But if the causative agent is infection, we have one sort of problem.  If it is cancer, we have much bigger challenges and more difficult "fixes."  

I walked, looking at the flower vendors, and food trucks setting up for the day. The constant movement of people, like a pulse, even in the early hour carried me along. I really love the city, for a country girl.

Along another line of thought, I spoke at length to my oldest son last night.  He, quite understandably, is struggling with this.  He offered up a string of ideas, solutions for this orthopedic problem that do not involve amputation.  "Couldn't you go with metal?  Could you use his fibula?..." He told me that he had loads of ideas, as he wrestled with the changes that Brent faces, that we face, as a family.

I explained to him that while it is not completely decided yet, amputation is what he should really be prepared for. I told him that Brent is not defined by his physical form.  But that this change, which is troubling to Alex, might serve as his own personal inspiration, especially if he has ideas.  Go into biomedical, and make the world better.

We all have hard things. It takes no effort to lie there, curled up in life and bewail our challenges.  Our job, I believe, is to turn those hard things into something good. 

I challenged Alex, that if he has ideas about how to fix this, he should write them down, explore them, find the problems that come with with the solutions (they are always there) and try to fix those problems too. If he feels passionately about this, he should do something about it, and try to help others.  I am trying to do that through my writing, using the hard things we have, and bringing good things to others, making it easier, in all hope.  

I drop off the wheelchair, having borrowed it overnight.  There is a family feeling about this, sort of like when I would take my parents car when I was a teenager.  The discharge nurse had encouraged us to borrow it (He had a needle biopsy only hours before, after all) shouting to the secretary at the desk as we left that we were taking it to RMH, feeling like like a sister of sorts.  Will I ever feel differently about this place, like when you step into your parents house after living on your own?  A bit of a guest, rather than like you belong there?  Should you knock?

I head back to RMH, up First Avenue.

A third line of thought, which I try to sort out...the people that have come into our lives.  I had shared with Brent that I believe that things happen for a reason, that there is a plan.  While God sometimes gives you hard things to do, he also sends you help along the way, guidance and support.  I see too many coincidences to think otherwise.  Lately, there have been people, who visit, and revisit my life in odd ways, at serendipitous times.  

Looking back, I sometimes understand what someone's purpose was in appearing at a particular time. But sometimes, I worry about the future when someone shows up.  I don't want the "help" that they might be offering, or the problems that they are best suited to assist me with. I fear what it might mean, and really wish that they would just go away.

For example, a doctor that has been particularly helpful to us in Ohio is looking for permanent position elsewhere, and unfortunately, has not secured anything as of yet.  He is extending his stay with oncology as a night hospitalist for another 6 months.  Until yesterday, I simply wished good things for him, and left it at that.  Now, that information carries a tinge of anxiety.  I do not want that sort of help, or those sorts of problems.  And I have a half dozen examples of this ilk to worry at me.

It is best not to look ahead in that way, I think. I remind myself that it is not all about me, or my family. And these sorts of things are not prophetic.  There are a multitude of purposes, and reasons, none easily seen or understood from this perspective. 

I have racked my brains, trying to figure out what all of the labs, and symptoms of the past 5 months add up to, in advance of the pathology which will take a week.  How would the CRP behave from infection, from cancer? But I am no doctor, and the doctors don't know.  We all wait.  I wait impatiently. Anxiously.  

I step into a coffee shop, my regular stop on this route. Brent and I were here only 2 days ago, grabbing a bite while people watching, and resting as the 5 block walk to Sloan was a lot for him to crutch. We didn't bring our own wheelchair to New York, and the thought had flitted through my head that day that perhaps I should arrange to return it, as we seldom use it anymore. Brent was looking forward to showing Dr. Healey how he could walk.  We had no idea how different that meeting would be from what we had imagined in that moment.

Brent is still sleeping when I return, an untroubled sleep. I put the linens in the dryer and suddenly it all washes over me.  I need to breathe.  And take one step.  One word.  One moment. One breath.  Then another of each.

I need to take the hard things and make them good.

We came here in solid clouds, that made the landing a leap of faith.  We leave in fog, which obscures the path right in front of us.  I am so grateful for the fact that we have an Angel Flight, so that I do not need to drive for 9 hours and focus on the immediate responsibilities of driving for that long, which are both too much and too little at the same time.  I miss my husband and my other children, and long to be all together.

We wait a week for pathology, to find out what we are doing.

We wait.