Help on the inside

I woke today, thinking about the changing of the guard.  We have done another year, and seen another group of doctors move on to new opportunities.  

Back in Ohio, when Lauren had her scans two weeks ago, I was forced to work my way through a number of people that I haven't met yet, and who have little experience in the University Hospitals system, much less with the crazy things that the Ramers have working.  

We became increasingly worried that evening, as we didn't get the call about Lauren's scan results and labs like we always have.  The last time the hospital didn't call until late, they were cooking up Christmas plans for brain surgery, so our anxiety was at least grounded in experience.  Going off of routine is never good on scan day, which is the time when we most often repeat the phrase "Boring is Beautiful." 

Finally, by 10 pm, to avoid crawling out of my skin any further, I called. I became increasingly frustrated, trying to get information out of strangers, who understandably wanted to follow protocol on their first day, and were reluctant to use alternate routes to information, suggested by me, a person that they didn't know. I do get it, from their perspective. I had to work hard, but after a series of phone calls back and forth, each with me rejecting the idea of 'calling back in the morning,' I got some answers.

Anyone who has gone through cancer can attest to scanxiety. We manage pretty well, but I need to tuck away the fact that summer scans will likely bring the challenge of newbies, and potential difficulty getting results.  I mean no disrespect here, and look forward to meeting these new folks in a couple of months when we return. (How delicious does that sound?!) 

Yes, the scans ended up clean, in case I left that in doubt.

So, as I mentioned, it is a universal time for docs to leave the nest and move on to other institutions, taking what they have learned and applying it to new patients, new situations.  This includes those here MSKCC.  We said goodbye to a number of doctors this weekend, and find that we have met many new ones as we leave.  I do not want to get to know these new ones at all, if you know what I mean.

There is undeniable advantage, however, in having people inside who know you, and who understand how to make the system work for you, be it in a hospital, insurance company, actually any large institution.  We find that at this time of year, we are in some ways the veterans, knowing how things are done and what in fact can be done. Unfortunately, this is the voice of experience. I could do without the experience.             

Part of beating cancer, is the medicine.  We are hugely compliant in this, evidenced by the fact that baby Vanco will be coming home again for a few days.  If it is medical marching orders that we get, we are great soldiers.  I have an alarm on my phone to remind me of what we need to do, and when we need to do it.

But, the other part of getting through cancer, is working through the institutions in order to have a sane life.  For me, the rules of the hospital are somewhat 'lesser' commandments. They are more like guidelines, for those who lack common sense or courtesy. Umm,  I view them as suggestions (visiting hours and age restrictions comes most immediately to mind).  Ok, as I continue to backpedal, much of it is arbitrary nonsense, and must be worked around.  

Making any of this work for my child and for my family, sometimes means bending institutional "rules" a bit, while, of course, maintaining respect for the health, healing and sanity of those around us, patient and health care worker alike.  

Considering how many doctors I deal with, for example, I personally wish that emailing was a bit more common, and encryption a bit less.  I recognize that everyone isn't as open as we are (most people don't blog the details of their health, or post X-rays to help explain things), but HIPPA and encryption are obstacles for me, rather than protections. Multiple 'release of information' forms, email permission slips for each individual doctor (are you kidding?) and institutional encryption worthy of Soviet cold war secrets, well, I haven't the time. 

I have been fortunate to have had the the help of folks on the 'inside,' to help cut red tape and to make our hospital lives run as smoothly as possible. Considering how much of our lives have been in hospital over the past two years, having our hospital lives "work" is no small thing.  But, as those folks graduate and move on, so must we.

And with any luck, we will have fewer doctors to email, and less reason to care if our hospital lives "work." 

Because we will be far too busy with our lives on the outside. 

 

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.

The timing of 'eventually' is perfect

They say that there is no such thing as coincidence.   I believe this.  I truly believe that there is a reason for everything.  And sometimes, it is not the things that happen, but the timing of those things that gives me goose bumps.

My son Brent was diagnosed with Osteosarcoma on his right pelvis nearly two years ago, and after 15 weeks of chemo, he had his entire right pelvis removed in NYC.  It was a giant surgery (18 hours) to remove a giant tumor. We were very fortunate to have found this surgeon, because he was able to reconstruct Brent's hip using donor bone, and save his leg.  (We are so grateful for the donor family as well)  There were 2 follow up surgeries back then, during the nearly two months that we were in New York, before we returned home to Ohio to finish another 15 weeks of punishing chemo.  The delays involved in the second half of chemo carried this process to nearly a year.

But, at the end of this year, my son was on the road to recovery.  He began physical therapy.  His marrow recovered.  He returned to school.  None of this was easy, but we were all happy to have active battle behind us.  There were still an ungodly number of visits to the hospital for scans, labs, PT, specialists... and at Christmas, a wound on his hip that simply would not heal sent us packing for New York again...a surgery whereby a muscle was moved from his abdomen over the donor bone, to help provide a better blood supply to the allograft and promote healing.

And he healed. It seemed to be a success, until last week's routine x-ray showed that the bone is disintegrating. Infection or cancer was the question of the day...because the cause of this deterioration dictated our choices.  If it were caused by cancer's return, there would be no choice. We would have to amputate and he would be on a very hard road of amped up chemo.

If it were infection, there might be some choice.  I prayed hard for infection, because my blood ran cold at the thought of cancer, both due to the orthopedic requirements as well as everything else that this implies.  Actually, amputation would be the least of our worries.  I am very glad to be able to put those thoughts aside for some time. May they remain there for all time.

We always knew that the donor bone would eventually need to be replaced.  'Eventually' is a very theoretical time, until you are looking at it face to face.  I am grateful that I am not smelling cancer's foul breath in this version of 'eventually.'

I would never have scheduled this, setting time aside for it.  But here we are.  And it will be ok.

Eventually, we will need to replace our roof...it is expensive and a very unsexy way to invest in your house, as I say. If you drop that kind of cash in your kitchen for example, you would have a party and invite your friends over to take a gander at your new cabinets when it was done.  There would be wine, and it would be worth the aggravation.  Which is why people ever embark upon such a construction project to begin with...one so inconvenient and disruptive, but with a big payout.

Most people, if they think about their roof at all, look at it and say "Eventually we will need to replace that."  But if it isn't leaking, or worrisome in some other way, you wait another year.  We have been in our home for 8 years...not sure how old the roof was when we bought it. I am grateful that we do not need to replace it this year. I hope to be grateful next year as well.  I hope to sell this house with the gratitude of many, many years of never replacing our roof.  If the eventuality of replacing the roof never came to me, I would be quite satisfied.

But, should we discover a leak, we knew that this was a possibility...a probability, in fact.  So, we call our contractor, and get busy.  Repair, or replace? 

I hope that the weather is dry, because we are doing a full tear off, exposing the rafters on this one. There are plans to rebuild though. We are thankful for the rebuild.  So very thankful.



Brent is happy, because he can finish the school year and enjoy all of the activities associated with the Kick-It fundraiser for pediatric cancer research that his school does every May.  He has been to a bake sale, a car wash, teacher dunk tank, a soccer scrimmage (boys vs. girls--girls won!) and next week has more events set up by middle school children.  If they make their goal again, they will have raised a total of $100,000 in four years, only working in the month of May. 

While there is some adult help, this is achieved mostly the effort and organization of children.  One of Brent's friends set up a website (heck, I couldn't do that) and a calendar of events.  There were scads of kids washing cars and baking cupcakes.  They are using their time and talent to make a difference.  They are using their collective numbers, with every little bit advancing the common goal.  It is a powerful lesson for these children, and one that I was impressed by, even before we were so personally invested in the cause.

I am grateful that Brent can participate in these things.  The timing of this surgery allows him to finish school, which is so important to him, and to attend 'Kick Bald' on Monday.  He challenged Lauren to raise $250 for the privilege of shaving his head in honor of kids in treatment, which has been a source of much teasing and fun between the siblings.  (I do not need to tell you how differently I felt about this as we worried about Brent's pathology last week, thinking he might soon be a child in treatment) 

Lauren baked up a storm, and made her goal...and then some.  I am so proud of her for thinking and planning.  She is grateful for the generosity of the donors...because while she makes a mean brownie, she recognizes that the charity was what was being supported. It will be a fun event, watching Lauren shave Brent's head at the school.  There is a sense of solidarity in the baldness.  Last year, when Brent had no hair, it was touching to see so many of his classmates sporting a shiny dome in his honor.  We are glad to be honoring other children this year, showing support in a visible way. 

We are looking forward to a time when baldness and cancer are not associated with children...or anyone for that matter.



Brent will be doing his Make a Wish next weekend. This is a wonderful organization that provides wishes for children with life threatening conditions.  Brent has dreamed for nearly a year and a half about what he would wish for, which has been a wonderful distraction from the many challenges that he has faced.  Many of his wish ideas involved sand or water, or a combination of both, which does not mix well with an open wound.  He wanted to wait until he healed, so that he could do this sort of wish. He waited, patiently most times. Eventually, we thought, he would heal and be able to do it.

But 'eventually' became far too theoretical for him last week.  He faces weeks in the hospital this summer and he knows that this surgery is not a sure thing.  He wanted to move forward with another wish.  He is going on a "shopping spree, " which mostly involves getting a computer.  He would like to learn how to design apps (?!?)  and feels that a laptop would be a good distraction while he is in the hospital.  He knows what this is like being isolated that way, and is using his wish, again, to make that difficult time better.


As I have been planning for this trip, I am struck with how different this is from the last time we removed his hip:

• There is no cancer to worry about, or chemo beckoning.  I will not be frantic about delays.  There will likely be delays.  I will be calm.
• Brent will be emotionally replenished and prepared.
• We know going in that it will be at least 4-5 weeks.  We can plan a visit with the kids in the middle of this because there are not restrictions for cold and flu. 
• The kids are out of school, so keeping things rolling here is simpler.  Alex is 15, and because he is home for the summer, can help with his sisters. 
• There are things that have fallen into place for us, like the fact that the chief of surgery from Bologna Italy, was recently picked up by MSKCC and put on staff...he has successfully done the surgery that Brent requires 12 times.  I am comforted by this addition.
• Dr. Healey, because he saw us just before his trip, has been consulting with the brightest in Europe about Brent's case.  We benefit from their experience and opinions, without needing a passport.
• In case I failed to emphasize it enough, we have no oncology pressure cooker.  I cannot say what a difference this will make going in. 

This series of surgeries is by no means a slam dunk.  It will be a long process and fraught with risk.  But there are things that I am encouraged by. Things that I am comforted by. Many things that make the challenge more manageable.  The timing of this eventually, is part of that comfort.

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.

A Delicate Gift

It was a remarkable day.  A beautiful one, but one laced with fear, punctuated with shock, celebrated in jubilation, in disbelief…in grief. 

The day began as my mom and Alex left to attend a funeral.  One of Alex’s soccer coaches, a young man, only 20 years old, died very suddenly and unexpectedly.  I could not go with Alex, because I had appointments with Brent at the hospital, and am grateful that my mom could go with him.  Alex spent his day celebrating the life of a friend, and grieving the loss of him.  This family, who I do not know, is close in my prayers, and heavy in my heart.

Dan has been keeping me updated on the status of a friend’s newborn baby, the joy experienced at his birth less than two weeks ago has been replaced with fear as this little one battles meningitis.  He has had multiple spinal taps and they expect several weeks in hospital.  Even from the tiniest humans, there is the spirit to survive.  I think of this family throughout my day and send them strength.

Brent and I were at the hospital all day.  There was nothing earth shattering…a mammogram for me, and clinic visit for him.  We stepped out for a walk at lunchtime, meeting Dan in the sunshine.  Brent and I toured Case’s campus, enjoying the chalk scrawls of anxious students approaching finals.  The encouragement and humor displayed was a good thing to see.  The mix of flowers, and mix of old and new architecture on campus was beautiful, and somehow calming.  We went into the Peter B Lewis building, designed by Frank Gehry, which Brent really enjoyed. 

At clinic, I called about the new treatments that Brent is to start, but learned that we cannot until insurance approval has cleared.  They said that it can take up to 10 days.  I am a little frustrated with this, but I know that there are bigger problems to have.  We have had bigger problems.  Others currently have bigger problems.  I try to balance patience with persistence, accepting what I cannot change, doing what I can, and finding the ever elusive “wisdom of knowing the difference.”

Dan texted me and said that Brent and I should go have a date, one that does not involve a hospital.  So, we did.  We went to a movie, on a Monday night, which is unheard of, and was fantastic.  Brent had dreamed of seeing Iron Man 3 that night, and woke up bitterly disappointed in the ending, which was one of the fun things we talked about as we walked.  So we went to see it together, just the two of us.

When we returned home, Dan told me the shocking news that Jina DeJesus, Amanda Berry and Michele Knight were all found alive after a decade of being missing.  Amazingly, joyful news.  It is unimaginable, both in that they are all alive, but also because they have been hidden here in Cleveland all along.  Unimaginable to think of what those years must have been like for those young girls, what they lost, how they will have to mend and rebuild a life.

Life is a gift, albeit a fragile one.  Even a broken one sometimes.  But out of the brokenness, out of the striving for survival, out of the rebuilding, and even out of the loss, we show that it matters, that it has value.   

And there is beauty where there is love...from the encouraging chalk scrawls on the sidewalk of the university to the hug of a neighbor-savior, and everything in between.

In the Begining...

So, Dan has been saying for a couple of weeks now that I need to give sort of a background of our story…a thumbnail of how we got here, because some on this blog are not on Caringbridge.  In truth, I have been dodging this task (but in fairness, it is not like I have been eating bonbons and watching reality TV or anything so frivolous)

So, how did we get here, in 10,000 words or less?  Uggh….Bonbons and reality TV is sounding pretty good about now. 
 



Our cancer story began in late 2003, once upon a time, when Dan and I were younger, much less medically experienced and simply enjoying our family.  We were busy, I thought, with three small children, but a ‘good busy’ and we had a blessed life. 

That whole frame of reference shifted, just changing Lauren’s diaper a bit before Christmas.  I noticed that she had begun to get some hair…down there.  I had a 15 month well visit on the calendar for her and so I planned to mention it to our pediatrician when we went in. 

We didn’t see her regular doctor that day at the practice (it was nearing  on Christmas), but the substitute pediatrician blamed it on hormones passed  to Lauren from my birth control pills, because I was still nursing.  Lauren was my last baby, and Dan still brought her in to me first thing each morning.  Feeling guilty and responsible for harming her, I never nursed her again.

I did, however, call my OB, to let him know (after all, he had prescribed the pills knowing that I hadn’t completely weaned her yet).  He asked me to bring Lauren in to see him that same day.  After examining her, he encouraged me to see a pediatric endocrinologist by the first of the year and to get some answers (What?  Getting into a specialist might take months, even without the holidays) He was emphatic that my nursing her had nothing to do with this, and strongly suspected some endocrine issue, maybe with the pituitary gland. He warned that Lauren might continue to develop, even start menstruating (What??!!! She is in diapers!!)   He told me not to worry, but to get some answers.  He also offered to help me get the consult, if I had any problems getting in.  First of the year…

This whisper of urgency was a message from God.

The specialist we saw initially examined her, but just wanted us to come back in 6 months.  He wasn’t even going to draw any labs.  My OB’s words stayed with me, and I pushed.  Finally, the endocrinologist agreed to draw blood, but assured us that he had seen this before, not to worry, and that we would see him in the summer. 

He called a few days later, with results that he did not expect, but that he failed to explain, despite our many questions.  He ordered another test, again, with assurances that knew what it would likely be…although he never explained what that precisely was. We repeated this pattern several times, for several different tests.

Finally, by early March, I took Lauren in for the latest test, an abdominal ultrasound.  Dan and I had decided that after this test, we wanted a new doctor, because this man, while very smart, was not a good fit for us.  We needed to understand what he was looking for, and what he was ruling out. 

We decided that Dan would take half a day off of work, to be with the boys and I would run in to Rainbow for the ultrasound, which was non-invasive and easy.   In the darkened room, I chatted with the tech, asking questions about what we were looking at, because when I was pregnant, I could never tell the difference between a foot and a face, much less determine who the child looked like.

“  … so, that is her adrenal gland?  Interesting…”  On to the other side.

“Is that her other adrenal gland?”

No.  You apparently are not supposed to be able to see it. This information was starting to take root in my mind.  But the tech then said that we needed a full bladder to look at her uterus or her ovaries, I forget which.  Could I maybe get her to drink some juice and fill her bladder over the next half an hour and she would be back? 

Alone in the room, we looked at the colorful mobile that hung above the examining table, read a book to Lauren, plying her with juice (I doubted that this would really work…in my experience, a full, uncomfortable bladder for a baby means an empty bladder and a full diaper).  I considered the two adrenals, the discrepancy in size and thought about how Dan would laugh at me for the fleeting thought that it was a tumor.  How ridiculous, because she was a baby.   We would certainly be laughing at this mama by dinnertime for being so silly.

But half an hour later, when the tech came back, she was not alone.  There was a full posse of medical backup…oncologist, social worker, radiologist…I forget who all else, but from my current perspective, I suspect the rest were underlings in tow (until we were well into this journey, I did not understand that there were levels of doctors, and doctors in training…all white coats are not created alike.)

There was a mass of people in the room. 

There was also a mass, in my daughter. 

 

They were admitting her, because one type of adrenal tumor causes dangerously high blood pressure and she could stroke out.  Did I need to make some calls?  The social worker would mind Lauren, and guide me over to admitting.  We would then be going to the oncology floor. She was going to be sedated for a CT scan.  I was informed of these things, told of this plan, not asked about it.  I think that this was probably a very good thing, having it all decided for me, because my brain had entirely stopped functioning.

This was the moment that I realized that I would never be going back to Kansas.

The social worker went with me and Lauren to a bank of pay phones, where I called Dan ‘…come meet me in pediatric oncology.  Yes, that means cancer.  Get someone to stay with the boys…my sister, or a friend in our neighborhood…but you need to come.  Now.’   It became a blurry nightmare…

Horrible call.  Horrible day.  To this day, I cannot walk past that bank of payphones without being in that moment, stomach lurching.  And they remain there for me to walk past, nearly every time I am in the hospital.  It never gets better.  Those pay phones take me there, every single time.

As it turned out, Lauren did not have the blood pressure issue with her tumor.  She had another, rarer, kind of mass (3-4 cases in 10 million as I understand it).  We were discharged after a sleepless night on RB2, one that I have next to no memory of, except that I left with a pounding headache, likely from not eating, not sleeping, and crying an awful lot.

While we waited a week for surgery to remove the tumor and entire gland, I thought about how fortunate we were that this happened at her age.  Because, had she been a bit older, she would have been potty trained, and I would not have noticed her symptoms so easily.  Her ravenous appetite, I chalked up to an impending growth spurt.  Many children get vaguely moody.  The one thing that really got my attention was the pubic hair.  And had I not seen it, especially when my OB would have reason to weigh in on it, well, we might have been in a whole ‘nuther boat.

A week later, when we came in for surgery, I remember changing her diaper and looking at her belly.  She looked so pink, so happy, so perfect.  I could not imagine handing her over to the surgeons, for them to cut her open, because she appeared so healthy.  It was hard to remember that she was sick, and it was very serious because she was a happy child, in no pain.  I really wished that a bikini wax would have fixed it. 

The surgery took several hours.  It felt longer, because as I now understand these things, it always does.  But Lauren did well.  Within days, we ended up chasing her around the unit with an IV pole on Rainbow 2, wheeling her around in a wagon.  She played in the playroom incessantly, partial to a kitchen set that they had there.  We were especially encouraged by her bounce, probably because we were absolutely spent with worry.    

Clean margins, completely resected.  When the pathology came in mixed, they explained that there were several factors that were encouraging…but the most concerning, was that it was pleomorphic, meaning under the microscope, there many different looking cells, which suggested an aggressive tumor. 

For this rare type of cancer, Adrenal Cortical Cancer (ACC), there was no effective chemotherapy available.  We could only wait and watch.  They would scan her, and do blood tests, measuring the testosterone level.  If the cancer came back, wherever it raised its ugly head, it would produce testosterone, which was what caused the pubic hair to grow, and the appetite.  This was something that we could detect at very low levels in her blood, likely before it produced any symptoms.  This is how we would know.  And then we would go looking for it.

When we came home, Dan turned to me, and said that he had to leave for a bit.  I was surprised, given that we had just returned home from a weeklong stint through the bowels of an emotional hell, the likes of which I could not have imagined.  I was personally ready for a nap. 

When he returned, his mission was clear.  He had been to Toys R Us and picked up a kitchen set for Lauren.  He noticed how much she enjoyed the one in the hospital, and really wanted her to have that same enjoyment at home.  It was a celebration of her recovery, and reward to her for being such a trooper.  This is just how my husband is.  I love him for it, and weep at the thought of how much he cares and looks out for our children.

When we came in to RBC for our first outpatient visit after surgery, the oncologist had a long talk with us.  She let us know that given Lauren’s rare tumor and young age, we should consider genetic testing.  The overwhelming odds, given the ACC, favored her having a genetic predisposition to cancer which was even more rare than the very rare tumor.  It was called Li-Fraumeni Syndrome.  It is a failure of the tumor suppressor gene p53, so she would more likely develop other cancers, different cancers.  All cancers.

 And if she had it, we should consider testing the boys.  And ourselves.   There was a 50% chance that we were also carriers.  Would we mind sending her tumor to St. Jude’s for testing?  ‘What were we going to do with it?  Put it in a jar on the mantle?  Of course, send it, by all means.’   

This, incidentally, might have been the very beginnings of my stress driven snark.

So, that day, we went from being cautiously pleased with Lauren’s surgical recovery and the mostly positive news out of pathology, feeling that we could beat this, to learning that we were likely only beginning our troubles, which could be vast. 

The genetic testing takes time, and for a month, I could only look at my children and instead of entertaining typical maternal thoughts, imagining the people that they would become (What college would they go to? What will their spouse be like?  Would they have children of their own?  What career might they take up?) I worried about a life in hospitals and the cancers that the three of them might develop.  It was a very long time in limbo. 

Internet research, for the record, is not a good pastime at such a point in your journey.  LFS is no picnic, I rapidly discovered.  It runs in families, and is devastating.  There is no cure, and only recently was there a way to test to see which family members would be affected by carrying a mutation in their p53 gene.  I cannot imagine how, in the absence of science, families processed this, making sense of the frequent and returning cancers in their family, of every variety.  They must have felt cursed by God.  They might still.

When we returned to RBC a month later, the genetic results still were not back.  The oncologist, knowing our anxiety, kindly called down to St Jude’s and got results faxed over.  She excitedly told us that we were somehow on the skinny side of the odds…Lauren did not have the mutation.  This was a fluke…  Bad luck…A lightening strike…  Pretend that this never happened.  Carry on.  Congratulations!

Jubilation and disbelief doesn’t begin to describe how we felt.   In retrospect, we probably should have stuck with disbelief, but who doesn’t grab on to good news when it is offered?  No one gets a second opinion on good news.

And as we progressed, drawing labs every month, with reassuringly low testosterone numbers and scanning her every three months with clean CT scans, the likelihood of the adrenal cancer returning decreased.  My anxiety on scan day never did, but statistically speaking, if the cancer were to return and spread, it would have likely done so within the first year.  We scanned her for 18 months and followed her labs, mostly for my own peace of mind, for several years at increasing intervals.  We were moving on.

But despite this generally positive trend, I frequently wrestled during this time with odd things that happened with Lauren.  Changes in her appetite had a sinister feel to them, a potential symptom of the cancer’s return. (And what child doesn’t have these sorts of changes as they grow?)   I tried to tamp down my worries and reminded myself that we had it beat.  And it was only a lightning strike...  A fluke...  Bad luck...

I am ashamed to say that more than once, I panicked as I changed her diaper…spotting a black hair or two on her nether parts.  The sick feeling, as my stomach dropped and my mind raced to very ugly places, fearing that the cancer was back…well, it fortunately disappeared upon closer inspection. 

I cursed our black dog Max, and my apparent lax housekeeping skills.  It was only stray dog hair down there, hair that easily wiped away.  Yes, this happened more than once, but my reaction was always the same.  I can laugh about it now, but in that moment, you know deep in your soul, that it can all change just that quickly.  And while the hair is easily wiped away, the fear is not.

So, I vowed to vacuum more diligently, to enjoy my blessings, and to try, with much effort, to relax.  I do recognize the paradox in that statement, but it was an effort…one that was required in order to make a new habit. To relax.  I was determined to not allow this episode to change our happiness.

Back in the day, we didn’t have cell phones and voicemail.  We waited for important calls, chained to our home, paralyzed with the wait.   When there were lab results, or scan results, this didn’t help me in my vow to enjoy my blessings, or offer any assistance with my effort  to relax about the results.

 And while my time on the phone with doctors and nurses naturally had to be a priority, Lauren was oblivious of this because of her young age.  The boys, and Alex in particular, were not oblivious.

Alex had questions, as all children do.  Especially on occasions when I was talking on the phone to various medical folk, and I would scold him and Brent impatiently, for squabbling over a toy, interrupting and distracting me from a rather significant conversation.  (They were 4 and 6, so, it is not surprising that they would occasionally need outside intervention, a peacekeeper, or negotiator)  But, I felt that I had to explain to them what was happening in our family and why they had to be especially good while I was talking on the phone to doctors.

Many people would try to protect their children from the hard reality of this all.  If I could, I probably would have tried.  But, for me, it seemed that Alex’s little world would make most sense if he understood what was going on.   He would understand me, and trust me.  It was a philosophical position, one of honesty, despite his young age.  I have never backed down from that decision.  And it has not always been easy.

After I explained that Lauren was sick, and that I needed to talk to her doctors, who were trying very hard to fix her up, Alex asked me if she was going to be all right.  He asked me, point blank, if she would die.

It was quite the loaded question out of a six year old. 

I was honest.  I told him that I didn’t know.  And it was perhaps the hardest sentence that I have ever been required to spit out.  It broke my heart saying it.  Almost in tears, I nearly choked on the words, and the awful reality of what those words represented.  Speaking the truth to him, I could no longer deny the possibility in my own mind. 

Not to spoil the ending or anything, but I have had to say these words more than once to Alex.  And it does not get any easier; you only think less about cushioning the truth in some fluff.  Because, God forbid, if it didn’t work out, which I could not control, I could not have that absolute travesty compounded by Alex’s mistrust of me and my words.  I knew that if I lost Lauren, I would also lose Alex, unless I was very clear and very honest in that particular moment. 

This was instantly distilled in my mind on that day, sitting on the steps of our little home, looking into his questioning eyes.   

I have never looked back.  On that point, at least.