Red Shoes, White Snow

Another milestone in Kelly’s treatment passed this week: the start of her radiation and chemo therapies.  This part of her journey will last for six weeks - thirty sessions of the radiation therapy and forty-two doses of the prescribed chemo drug.

The preparations and procedures that Kelly undergoes in her radiation therapy are quite simple and very precise.

Upon entry into the radiation room, Kelly is not required to change into ward garb, but remains in her street clothes; she simply removes any earrings and any other head gear or accessories.  Once prepped, she lies flat on a table-like platform without cushion or cover.  After she has been carefully positioned on the table, an assistant places the head brace on Kelly and its proper fit is confirmed.  The brace itself is then fastened to the table, ensuring that Kelly’s head is in the exact pre-programmed position and ready for radiation.

The apparatus that emits the radiation moves about her head, first directly in front of her head, then to the left side and finally to the right side.  The machine emits a quiet clik-clik-clik sound when emitting its radiation. Otherwise, the procedure is completely non-intrusive.  The total time under radiation is about 10 minutes.  After completion of the radiation cycle, the procedures to release Kelly from the brace and table are reversed and she’s finished for the day!  In total, perhaps 30 minutes pass between entering the radiation room to walking out of the clinic.  Kelly reports no discomfort during therapy or afterwards, though this may change over time as the effects of the radiation accumulate.

The only change in this weekly routine occurs on Tuesdays: a weekly consultation with Dr. Chan’s chief nurse to discuss Kelly’s experiences and the radiation program for the following week.  Kelly has been allowed to pick her appointment times, preferring mid-day appointments for those days that she commutes by train from Mountainville and early morning sessions on those days when she is living in Manhattan.

The day that radiation therapy began Kelly also started chemotherapy.  Thankfully, this therapy is contained in capsule form.  A temozolomide drug, the Temodar capsule is prescribed in 140 mg strength for Kelly.  After dinner and prior to retiring to bed, an anti-nausea pill is taken about ½ hour prior to taking the Temodar capsule.  Kelly has experienced only minor side effects at the start of this routine but those have diminished now.  Whereas the radiation treatments are given 5 days a week, Monday through Friday, the chemotherapy capsule is taken every night.

The scar on Kelly’s head continues to heal very well.  The hair around the long wound is beginning to re-grow – standing straight up like a diagonal mini-Mohawk. Soon she will be able to comb this right back into her natural style.  But not to fall out of current fashion, her radiation treatments will probably result in hair loss at the various points where the radiation is directed; she’ll still retain that “punk” look she has recently acquired.

Mountainville was covered by a thick blanket of snow on the 26^th and we continue to enjoy the traditional winter wonderland vistas like those we marveled at in storybooks of yore.  The snow fell light and dry, covering the broken landscape under smooth white drifts that are easily blown about by the wind, reshaping and softening the terrain.  The leafless forest trees and sparse underbrush barely intrude on the white-scape. Making snowballs, snow angels and sledding down the slopes are pleasures of the season; and shoveling snow and scraping ice off windshields are the type of chores that result from the season. Temperatures have remained low enough to preserve most of the snowfall, at least through New Year’s weekend.

Ian and Mary spent Christmas with Mary's extended family in Annapolis and Norfolk.  They joined us on Wednesday and will stay for a few days before returning to their new home in Panama.

Santa and our family and friends were quite thoughtful when choosing gifts to share this year.  Among the gifts to Kelly was a pair of red shoes like those worn by Dorothy to travel to the Land of Oz.  And just like Dorothy, Kelly was advised that she only need to put them on and knock her heels together three time to transport herself off to any land she wishes to visit.  And that land, as you may imagine, lies on the tiny isthmus connecting continents more than a thousand miles to our south.  Home is where the heart is; home is Panama.

The countdown is on...if all goes as planned, this magical journey home will take place in just over 6 weeks!  Indeed, that is music to our ears.

We think of you as we cuddle close to the fireplace, sharing memories of past New Year days and ringing in a New Year as bright and shining as the winter snow that now surrounds us.  And we send you a hearty New Year message: throughout the year, may you enjoy the love and warmth of home, family and friends.

Clan Dillon

A Christmas Prayer

As a university freshman, Mari was an enthusiastic member of her college choir.  Most memorable for her was participating in Beethoven’s Ninth Symphony in a campus Christmas celebration at the foothills of the Rocky Mountains.  She has often related the soaring hope and confirmation of faith that evolved from the rising thunder of the music and the adapted lyrics of the finale.  The memory of the Ode to Joy forever warms her heart and soothes a restless soul.  Lyrics sung so long ago still provide strength to this very day:

Be embraced, millions!

This kiss for the whole world!

Brothers, above the starry canopy

Must a loving Father dwell.

Do you bow down, millions?

Do you sense the Creator, world?

Seek Him beyond the starry canopy!

Beyond the stars must He dwell.

Some forty years later and in mountain foothills on the other side of the continent, another clear and icy Christmas eve brings renewed hope and faith.  Tio Pat, Tia Zoila and their children, Lucia Patricia and Wilson, arrived from Panama on Wednesday to spend their holiday in the boundless hospitality of Kurt and Bea.  We will join together this evening for an expanded family dinner in the Stone House, reminiscing on the past and ruminating about our futures.

Our temporary home is decorated with tree and trimmings and festive lights, a constant log fire warming us.  What brings us most cheer and warmth are the innumerable gifts of love and friendship offered over these past months; they float about in this Glass House and comfort Kelly and her family at every moment.

The five of us witnessed the lunar eclipse earlier this week; a beautiful moon colored the red of the Sedona cliffs crossed quietly under a great clear canopy of stars.  On this Christmas eve, we announce again our faith in God and his mercy and our love for family and friends.  God bless each of you and keep you healthy and hardy.

The Dillons


Christmas Eve

Our Angel.
A gift to Kelly from Sister Barbara and Sister Dina from MUCEC
Colon, Republica de Panama

 One of Kelly's many ornaments she has collected from our time in NY.

A beautiful arrangement of tulips sent to Kelly from her friend Stevie Bowman.

Mom and Pops hard at work preparing for our family feast!

The Nutcracker

Hello All,

Many folks have been emailing and texting, wondering what has been going on in Kelly’s world since Thanksgiving.  She has been busily traveling to and from NY City for the last 10 days, going from one doctor to another and submitting to more exams and tests to monitor her progress.  We met with doctors, doctors met with other doctors, plans were agreed upon, appointments were set up, etc.  And in a parallel universe, we’ve been joined at the hip with the insurance company, lining up the endless bureaucratic paperwork required by a major medical event (a future blog entry will deal with health insurance, sharing critical information that we have learned along the way).

If I had to compare our life these last several weeks to something familiar, I would suggest the end of the first act of the famous musical, The Nutcracker.  And right at that point of the ballet when things are very, very wound up and crazy; when gingerbread and tin soldiers are twirling and spinning and running because the Mouse King and his minions are attacking!  We can relate to that because it feels as if we have been spinning around in a frenzy, scurrying from office to office, meeting and missing appointments, dashing for an unscheduled exam, gulping down meals at odd hours, fretting in waiting rooms, etc., etc.  With each day, the momentum increases and everyone is saying, “Hurry, hurry!  Why is the insurance company taking so long?  Why has the hospital not responded yet?  Where are these papers?  Take this here; take that there; call so-and-so!”  Inevitably, you start feeling  like you are one of the dancers in The Nutcracker, running, rushing, not having any idea what’s coming next.  Momentum builds up to a frenzy, just like in the musical!  We are hoping that once the treatment begins, the tempest will break and - bang! - all the madness will come tumbling down….. a deep peace falling over the land.  And we will return to a more normal, sane life.  The mice will have been destroyed and happiness will reign again over the Land of Sweets!  Yes, that’s what these weeks have been like. Crazy!

We’ve now interviewed Dr. Posner (chief neuro oncologist) and received his frank and insightful analysis.  We had a lengthy consultation with Dr. Mellinghoff (medical oncologist), who explained the planned chemo therapy (and confirmed that he will direct Kelly’s case over the long term).  This past week we visited Dr. Chan (radiation oncologist) and his team, who did a good job of explaining all the ins and outs of the radiation regimen.  All of these doctors are MSKCC staff and all treatment will be performed at the primary facility in NYC.  The therapies are very much the same as we explained in an earlier blog, i.e., 6 weeks of concurrent radiation and chemo therapies, 4 weeks of rest,  followed by 6 monthly cycles of chemo.  None of that has changed.

Starting Monday, the 13th, Kelly will be fitted for a head mask, used to keep her head immobile and precisely located during radiation.  A plaster mesh is placed over her face and head to make a mold that will then be used to make the mask.  A CT scan of her head will be taken and used to map the precise positions and angles where the beams of radiation will be directed into the head.  The radiation oncologist and a team of physicists (!) use the imagery to develop this very precise plan of attack.  This is called the "setup" phase and it takes nearly 2 weeks to complete.  

These radiation treatments are scheduled for five days each week, Monday-Friday, and will only take a few minutes each session.  It’s a matter of arriving at your scheduled time, fitting and adjusting the mask, sitting alone in a treatment room while being bombarded intermittently with radiation for a few minutes (this is IMRT therapy) and then removing the apparatus.  The photon beams enter the head along several different paths; all of the beams intersecting at the location of the tumor.  Hopefully, the radiation will cauterize the surrounding tissue and cut off the blood flow that keeps the astrocytoma cells alive and metastasizing (multiplying), thus killing them.  She was told to bring along a CD with the music of her choice and they would play that for her while she was being treated.  The staff allows the patients to choose the scheduled time for this daily regimen.

Concurrent with the radiation, chemo therapy is used, but for seven days a week.  The chemotherapy drug is temozolomide, and is available in pill form.  Called Temodar, it does not cause the terrible discomfort common with other forms of chemo.  We have been told by all the specialists that most people have no side effects from the chemo other than fatigue, which sets in after the 4^th week or so.  Temodar is recommended in Kelly's case because it works best against astrocytoma cells.  Temodar "interferes with cell division, thus slowing tumor growth.  Because the basic building blocks of temozolomide are small molecules, the drug is able to cross the blood-brain barrier and reach tissues other chemotherapeutic agents cannot. Temozolomide has been shown to prolong survival and improve patients' quality of life."  Kelly will experience some nausea, but that will be minimized by taking anti-nausea medicine each night an hour before she takes the Temodar, so by the time she wakes in the morning, she should be feeling fine.

Radiation and chemo therapies will begin as soon as they complete Kelly's mask, probably just before Christmas.   The task of providing radiation to the brain is very tricky and must be done by radiologists that specialize in brain tumors.  The path that is mapped out in the brain for the radiation to enter the tumor site(s) must be very precise as there is the risk of causing damage to other areas of the brain.  So, it has been very important that experts be in charge of the radiation and chemo therapies.  Dr. Mellinghoff and Dr. Chan are the experts in their specialties at MSKCC and they will have the continuous support and counsel of Dr. Posner; we are absolutely confident that Kelly's care is in the very best hands.

When the 6 weeks of radiation and chemo therapies are completed, Kelly will then rest for 4 weeks.  She will remain in NY for observation during those 4 weeks and if her team of doctors determine that the brain swelling diminishes in a normal fashion during this time, she will be allowed to return home to Panama.  The following 6 months of chemo can be done while in Panama and any MRI’s that are required during these 6 months also can be taken in Panama and sent to MSKCC.  Kelly will return to Sloan Kettering every 6 months for a checkup and, based on the final MRI scan at the end of this period, the doctors would decide upon further treatment, if any.  Once she returns home, she can resume her normal way of life (of course, within limitations… extreme sports are on the “No Way” list for life!).

We are tired…. it’s been a long 6 weeks!  But, we are most grateful that everything has turned out in such a successful manner.  Every doctor or nurse that examines Kelly shakes his/her head in disbelief that she had undergone a supremely delicate operation and recovery ordeal and yet continues to maintain high spirits and excellent health.  Her family looks at her in wonder.  She’s very strong of heart and we are confident that she will take on the next phase of her journey with the same optimism and deep faith that God is watching over her.

A wonderful family friend gifted Kelly the keys to a cozy furnished apartment only two blocks from the medical center on the Upper East side of Manhattan.  Kelly and Hector have found the center of the universe!  She is currently undergoing treatment at the nearby NYU fertility clinic (a precautionary measure - for her future), anticipating the start of radiation/chemo therapies at mid-month.  And during these tumultuous days we made another move - to the Glass House, a wonderful Modern wood/glass home set on a rocky ledge in the woods bordering Pea Hill.  With full-height glass walls on all sides, she offers sweeping views across the valley and past Schunnemunk Mountain.  We will probably reside there for the duration, winter weather permitting, and Kelly will switch between the two homes as needed.  Annie flew down to Atlanta this past weekend and will drive the Explorer back to NY the end of this week (with her beau, Thomson, as co-pilot); we've been forewarned that the little Mazda we brought North may not be capable of navigating the country roads to and from our winter hideout.  4x4 and tire chains!  Panameños shudder just thinking about it.

We are all very homesick!  Your notes and messages of comfort, enthusiasm, insight and support are the wind in our sails.  Stay connected, especially with Kelly and Ani.  We know that we have been deeply blessed - with your care, your friendship and your love.

Much love and saludos to all,

Mari and Mark

*Happy Faces in NY*

(1)Eskimo kisses are about all you can muster when the temperature drops into the 20's! (2)Hector at FAO Schwartz...Kelly says he lost his mind when he saw this much chocolate! (3)Watch out New Yorker's, there is a Panamena driving through traffic today...and it's her first time driving in the city! (4)"The best smooch is by my Pops!"~Kelly (5)Mom and I indulging on a Frozen Hot Chocolate from Serendipity! (6)Kelly and Hector take a stroll through Central Park on the last warm(er)day of the season.

A Note from Home

Now that we have completed recent consultations for Kelly's on-going therapies (more details to come soon) and adding some order to the confusion and uncertainties of our options in NYC and elsewhere, Dad returned to Panama last Thursday.  Ian and Mary collected Dad and baggage at Tocumen airport and quickly brought him up to date on local happenings both at home and office.   Upon arriving home, Dad found that Pauline and the (too) numerous household pets were in good health and anxious to relate all manner of recent disasters and triumphs since his last exit.

Well after Ian and Mary had left for home, Pauline appeared at the doorway to Dad's den.

"Mr. Mark, I leave you a note on the table."

"You left a note on the table?"  Now what manner of catastrophe would require that she write a note?

She disappeared from the doorway, quickly returning with the note.  

"'ere is it."  Then, taking up her beloved Scotty, Abigail, she retired to her little house in back.

After serving Dad a late-night supper and with quiet returning to the house, Pauline had sat down at the kitchen table and, writing neatly on a large index card, she composed this heart-felt poem for her sister, Kelly, and her family:

Sorrow

Our sunshine days are soon forgotten

when God sends the rain.

And when it rains on our parade

how quickly we complain.

But no one walks the road of life

in sunshine all the time.

There are pitfalls along the way

and mountains we must climb.

Sorrow dwells in the broken heart

where doubts and fear reside,

and thrives there in the shadows of tears

that we try to hide.

Where sorrow dwells, there is no joy,

no sunshine in our soul.

For dark and dreary are the days

when sorrow takes its toll.

God is with you

whenever there is pain.

There could be no rose

without a little rain.

A little faith, a little hope, abide.

And take heart;

Sorrow will soon depart.

November rains in Panama have again been heavy and ever threatening, causing widespread suffering and damage in the countryside.  But dry season will "soon come" and sunshine and dry weather will return.  As Pauline declared at the end of her note, we must "Keep the faith".