California Dreaming

We have been very busy, but a good busy.  Actually, wonderful, magical, blessed time to be together as a family.  Lauren had her Make a Wish, which was to be in a Hollywood movie. She was willing to wait for it.  It was everything that she hoped that it would be, and then some.

Make a Wish is a terrific organization that tries to grant wishes to children with life threatening conditions, like a brain tumor the size of an egg or giant, throbbing osteogenic tumors.  We have been blessed and fortunate to have had two wishes granted in the past 5 months, although that is the ultimate "glass half full" statement.  The empty part of the glass is how we had two children with life threatening illness, simultaneously. I prefer to look at the blessings we have had, and this trip was definitely a blessing.

I must say that we packed a ton into the five days that we were in California: a day at Universal Studios and City Walk, a trip to Santa Monica Pier, a day of filming, a visit to the Hollywood walk of fame, an afternoon at Venice Beach, a drive up to the Griffith Observatory, and through the foothills of Hollywood for a photo op by the famous sign, an evening at the Getty Center which has stunning views from a mountain top...  It was all fantastic.

I think about the opportunity we had to be together, and for Lauren to have her dream of being in a movie, something that we couldn't have possibly done for her on our own.  I am so grateful to Southwest Airlines, those who donated airline miles and hotel points, the generosity of Disney and Universal Studios. We had everything that we could need, and it was all planned out for us.  It was an amazing gift to us all.



As I sat on the beach one afternoon, watching my children play in the surf, I enjoyed some quiet. Brent took his crutches into the water, delighted to be able to swim.  I watched the sun glinting off of the water, reducing the kids forms to silhouettes.  It was really beautiful.

I remember how my friend had shared with me a dream that she had very early in Brent's diagnosis.  She had dreamt of our children, all much older, playing together on the beach.  Monica is one of those people who have dreams that mean something, that seem somehow prophetic. In the very dark days of that fall, I couldn't fathom how her dream could be anything more than a fantasy.  Last week, I watched that dream unfold, right before my eyes on Venice Beach. 

The goose bumps I had could not simply be attributed to the cool ocean breeze, as this realization washed over me.

But as I watched my children splash in the Pacific, I thought about how far we had come.  Sure, we flew 2,000 miles to get here, but the road to this point was really much farther. It was physically grueling, emotionally exhausting, circuitous and perilous.  But, we had arrived together at the Pacific...meaning 'the peaceful' ocean.

Lauren was especially excited to be in the ocean.  She wave jumped, coming up and double pointing to the heavens as she stuck the landings.  Over and over, she took on the waves that came in, delighting in the challenge and celebrating in her own success.  She and Alex went pretty far out, and swam together.  I like how they look out for one another and enjoy each others company.

Olivia found a long stem rose in the surf, and planted it in the sand, reminding me of another dear friend who finds comfort in roses discovered in unexpected places.  Livvy began playing with the waves closer to shore, starting most sandpiper-like, being chased by them as all children do at that age.  Eventually, she too ended up wet, splashing around with Brent.  She isn't experienced about looking out to sea, and she got surprised by a wave, which completely knocked her over.  She came running in to have her face wiped and a sip of Gatorade to wash out the saltwater taste.  And then she was back in the ocean. 

They just pick themselves up, and get back to giggling.  Back to living.

So this morning I was waiting for yesterdays scan results, looking out to sea.  I was trying to be prepared, and not get completely knocked over by the waves.  At long last, the call came and the scans look generally good...only one lymph node to be followed up on in a month. I think we have stuck the landing and can double point to the heavens.

I know that the Pacific was named "peaceful" only relative to the stormy, tumultuous Atlantic.  There are still waves and sharks and other hazards out there.

But, today, I am most grateful for the relative peace that we enjoy as a family, and the good glow of mostly boring scan results.

 

Relapse

It has been a rough couple of weeks.  

The Ramers have been terrific.  Brent has perfect attendance at school.  We have been getting our lives back on track.  I might even get to see the inside of the kids school rather than the inside of their various hospitals.  It has been great.

We enjoyed a fantastic day on Sunday via Flashes of Hope, sponsored by the Browns in honor of pediatric cancer awareness month.  Dan and the kids got to go down on the field as the teams warmed up.  We watched the game with two other families from the corporate suite.  The Browns won.  The weather was perfect.  We parked under the stadium with the players.  Fabulous day.

But for me, there was something of a shadow lurking over this all, because in LFS land, it has been positively raining relapse.  A friend who messaged me frequently about her osteo relapse options, went into hospice.  Others have been struggling with their second and third cancers.  And most devastatingly, a dear mutant friend announced that they found mets in her lungs and bones.  Perhaps sarcoma, but likely breast cancer.  There has been some swearing in my head.  I have vile things to say about cancer.

And, amongst all of this, Lauren has been getting headaches. They started out fairly sporadic.  They happened only at school.  But there has been a definite uptick in the frequency and the intensity of them. Dan and I were not thrilled about this.  We were nearing on scans, and were thinking between us that the brain MRI in two weeks couldn't come soon enough.  

As Lauren had more headaches over the weekend, I made plans to email her oncologist.  But first thing Monday morning, my phone rang.  The local Make a Wish chapter had a possible opportunity for Lauren, which felt both exciting and ominous.  While I had hoped to move her MRI up for my own peace of mind, now I really needed to, for this wish opportunity.  I emailed her team, advising them of her new and concerning symptom.   They forwarded it on to neuro oncology. 

When she came home after school on Monday in tears over a headache, I put her to bed, and called oncology. Phone calls back and forth...and by the end of the day, she was scheduled for an MRI first thing Tuesday morning. 

So, I checked Lauren several times overnight, but she slept soundly.  Lets just say, I did not.  Tossing and turning.  At 2am, I woke to discover a recent email from my geneticist.  My friend had also emailed.  I had too many thoughts swirling in my head. I couldn't sleep, but I couldn't do much else either.

We battled morning rush hour traffic to a satellite of University Hospitals. Lauren was great.  I was just simply jumping thought the next hoop, grimly, because we had to know what we were dealing with. We checked in at radiology and began to wait.  

Make a Wish called while we sat there to confirm the dates for her wish.  I knew that we would do her wish regardless of the scan results, and am grateful for the opportunity.  But it would feel very different, if we were traveling with the carry on baggage of another brain tumor, and a return trip to oncology on the itinerary.  

Lauren changed into a gown, and I was allowed with her in the back, to watch her scan.  The tech stopped the MRI to stick her and give her IV contrast, then put her back in the tube. He was a one man show in this small outfit. I resumed my waiting, trying not to think ugly thoughts.  Make a Wish called again to confirm more details.  I wanted to throw up, completely distracted by the fact that they were making images of my daughters brain, and how that information would determine the course of our lives.

I shared the details of Lauren's wish with the tech, in an effort to distract myself from awful thoughts.  I imagined how excited she will be to hear this news, having been patient so long.  He wished her well, and finally went in to pull Lauren out of the tube.  She quickly changed back into her clothes and we left.  

Before we could even get on to the highway, my phone rang, a number I recognized from the hospital. Dr. Sterns, the neuro oncologist said that he was looking over the scans, and that they appeared unchanged from her last ones.  I think that he must have been looking at them live from UH Main Campus during her scan.  I am so grateful for technology.  I am grateful for the clean scan.  I am grateful for the phone call.

I could breathe.

Lauren texted Dan to inform him of the good news while I was driving: "Hi daddy, its Lauren.  Just wanted to tell you that there is nothing wrong with my totally awesome cancer-free brain." We had breakfast together, at what she now calls our 'good news restaurant,'  and I took her home to get some rest.  I headed out to the main hospital for my own appointments and errands, now very happy with my day.

The very first person I lay eyes on upon arriving at UH was Lauren's neurosurgeon.  I swear, if I didn't already know her MRI was clean, I would have thrown up all over him.  Instead, I giggle to myself and text Dan about it.  These things feel so different without the uncertainty. 

I know, in my head, that cancer isn't contagious.  But the series of sad and troubling announcements from my friends had the universal effect of sending everyone in LFS world scurrying to "get their shit checked out," forgive my language.  Because, while we might laugh inappropriately at cancer, at oncology, and the horrible things we are required to do, we all have a very healthy respect for LFS (Ha! Isn't that an ironic turn of phrase?) and the potential for cancer. Neither LFS, nor cancer, is anything to mess with.

The relapse storm just serves as a reminder.  An alarm bell to anyone who might be tempted into complacency, which we all are. Everyone is busy with life, and everyone with LFS wearies of time in hospital. Furthermore, even for us, there are normal things, not just cancer.  It is just hard to know what to worry about.  

A great deal of the research to date with LFS centers on the psychological implications of knowing your status, what I refer to with much irritation as the "how do you feel, know that you know?" research.  It is a balance, having due diligence, and living.  With LFS, we start with 'rule out brain cancer' and work our way back to  'adolescent onset migraines.'  We have to, given our genetic circumstances. 

And we high five migraines in this house.

So at the end of my long day at the hospital, I returned home, and Dan and I gathered together the kids to talk as a family.  Our talk is different than other talks that we have had.  The talk that I worried about having.  A talk that my friend was having with her four beautiful children.  We celebrate migraines in this house, as cancer averted.  And we get back to the business of living, and embracing the blessings that each day offers us.

And we shared that Lauren has been granted her wish. Hollywood is going to Hollywood.  She and her totally awesome cancer free brain are going to be in a movie.

We leave in a week.

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

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.

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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.