DecemberUpdates

Apologies for the delayed update, but it was a difficult/busy two days at the hospital, and even the passage of one day to the next is sometimes a blur....

The transfer to St. Elizabeth's rehab facility was postponed until early this evening, when she was brought via ambulance and is now settled in.

Tomorrow begins what is sure to be a challenging and intensive journey towards recovery.

Due to Joyce/mom's continued cognitive impairment -- and her continued battle against the extraordinary exhaustion induced by major brain surgery -- the rehabilitation process will take absolutely every ounce of energy and focus that she can muster. Therefore, we have to respectfully request that she receive no visitors, at least for the time being.

The entire Arnold family greatly appreciates everyone's genuine interest, concern, prayers, positive energy and thoughtful messages.

Joyce/mom continues to draw on her extraordinary inner strength, courage, fortitude, determination and good humor – which have served her well all through life – as she persists to battle against constant exhaustion and fatigue to participate in her aggressive rehabilitation regiment. The comprehensive therapy she is receiving is imperative to improve her mobility and cognitive processing to the point that she is able to return home, which is the goal that she has continued to communicate, despite her confused state.

Due to her cognitive impairment – as well as our over-protective nature of our beloved mother – one of us has slept in the ICU waiting room/spent the night in her hospital room every day since her surgery on November 24th and Dick or one of the kids has been with her every single minute.

Next week, she will begin the radiation/chemo protocol that is standard for this type of disease (Glioblastoma, which gained recent attention after Ted Kennedy’s diagnosis.)

Joyce/mom had quite an eventful day today as she embarked on her journey of treatment; a daunting journey across uncharted territory, not dissimilar to the harrowing journey traversed by one of her lifelong heroes, Charles Lindbergh, and one which she is already facing with the same courage and determination that she so admired of Lindbergh.

This morning, mom was transported from St. Elizabeth’s Hospital to her first appointment at the Cancer Treatment Center in Swansea via a wheelchair-transport van, which was quite a unique experience, but less eventful than her commute from St. Louis University Hospital last week, when her ambulance was flagged down to stop and assist an inebriated man who had fallen on the sidewalk and was bleeding profusely from the head.

While at the Treatment Center, mom underwent a CT scan and was then fitted for the mask that she will be required to wear during each of her 30 radiation treatments, which will commence in about a week.

Despite her grueling morning, mom’s tenacity propelled her to not only fully participate in her afternoon physical therapy session back at St. Elizabeth’s, but to perform at her highest level yet!

The true essence of mom’s unique and wonderful personality is able to permeate even her cognitive impairment and her exhaustion, and is being recognized and acknowledged by her therapists and her nursing staff, who have begun to realize what an extraordinary woman they have in their midst. The staff is additionally amazed by the Arnold kids’ infinite reserve of special “mom stories,” including her love of literature and poetry and how she eschews store-bought gifts in favor of a note, a poem, or a kind gesture to others or how she gave each of us $60 on her 60th birthday with instructions to do something fun or special on her day!

Joyce/mom has had a busy two days of therapy milestones and we are encouraged that we are noticing a slight improvement in her extreme lethargy and level of alertness, as she begins to be weaned off of some of her medication.

She is working so incredibly hard (although she has NEVER done ANYTHING in her life, without giving it 1,000%) at both her rigorous therapy schedule and at forcing herself to eat as she progresses towards her goal of enjoying the simple, normal pleasures of life at home, such as sipping coffee at the dining room table with her beloved husband of 51 years or enjoying the view out of her sunroom window.

During one therapy session yesterday, the therapists actually took mom OUTSIDE to practice getting in and out of a car!. It was difficult, but she did it!

.In yet another session, she was able to lengthen the distance she could walk at a steady pace without stopping (about 400 ft).

She additionally is showing improvement with her cognitive processing, demonstrating her ability to remember a greater number of commands in a row.

What continues to be evident to each of mom's children is that, despite her current diminished and impaired state, mom has not relinquished her roles as our source of greatest strength and inspiration as well as our true matriarch and the HUB of the ARNOLD FAMILY WHEEL!

Joyce/mom is continuing to push through her exhaustion to participate in her six daily therapy sessions, consisting of two sessions each of physical, occupational, and cognitive therapy. Although it is so difficult to see her having to work so hard – and expend such energy – at relearning tasks that she once took for granted, such as brushing her teeth, changing her clothes, or walking up two small steps, we know it is necessary in order for her to be able to return home.

We are also learning to manage our expectations as we encounter the “one step forward/two steps back” that we were forewarned is typical of brain-related recovery/recuperation.

Despite this extraordinary challenge, Mom is still Mom. And, as we maintain 24/7 care at her side, we are each grateful for what a TRUE GIFT it has been to spend this one-on-one time with our beloved mother. Although this journey has already been long and arduous, we savor our time with her and each of our “shifts” is affording a treasured, unique experience for each of us.

Though this is a confusing time for Mom, her deepest loves are clearly intact, including her family, her faith and her love of music and poetry. During a quiet moment recently, when she was asked, "What are you thinking right now, mom?" she responded with a remarkably honest: "I'm glad......that there is such a thing as.....as hope." In addition, as tears well in her eyes, Mom has been reciting a stanza from one of her favorite Emily Dickinson poems, "Hope."

Hope is the thing with feathers

That perches in the soul,

And sings the tune--without the words,

And never stops at all.

Although Joyce/Mom was scheduled to begin radiation/chemo this week for her Glioblastoma Multiforme diagnosis, which is typically quite aggressive, we have decided to postpone – and possibly forgo -- these treatments after much thought, prayer, love, and advice from medical professionals.

We are choosing life, choosing hope, and choosing joy for every moment we share together. Our main focus now is unselfishly respecting Mom’s wishes and doing whatever we can to help her enjoy life and spend time at home.

Although we were planning to bring her home from St. Elizabeth’s Rehab Unit today, a pre-release vascular test revealed numerous blood clots, which required immediate attention. A vascular surgeon was called in to insert a device inside an adominal artery to block a blood clot from reaching her lungs. The use of necessary blood thinners is complicated by her having had recent, major brain surgery, requiring extra-vigilant monitoring and frequent blood tests. Due to this complication, she has been moved to a medical floor at the hospital.

When mom does return home, we know she would enjoy us sharing your favorite memories/stories with her.

If you are so inclined, feel free to post them in the on-line Guest Book, send them via “snail mail” (address at top of website), or e-mail them to: elisaarnold@charter.net

Your prayers and positive messages continue to be very appreciated, as they have buoyed all of our spirits.

Dad’s only Christmas wish -- to have mom home with him again -- was fulfilled after mom was released from the hospital late Tuesday and arrived home via ambulance.

She is already more relaxed and comforted by the quieter, less structured pace and the familiar noises of home and she found immediate peace in the constant presence of her ultimate love and greatest source of strength and solace, her beloved Dick.

She is transitioning to her new routine, which includes monitoring by a day-shift licensed nurse and the continued 24/7 presence of at least one of her children at all times.

Although we find ourselves confronting this holiday conflicted, we find our beloved, departed brother, Rick, reaching out to us with his eloquent, prophetic and insightful “Another 12 Days of Christmas,” which he wrote just two Christmases ago, in which he admonished us to find "joy in places and situations that you never thought possible."

As reflected below, it is a gift that Rick saved for his 12th Day of Christmas, "…a gift so small it would fit under any tree, so large, no box could contain it, so inexpensive, a child could afford it, and so priceless, no one could ever buy it; the gift of time, time to treasure who you have, what you have and why you have it for as long as time will allow."

Another 12 Days of Christmas

By Rick Arnold December, 2007

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Because I’ve never seen a partridge in a pear tree and because the thought of lords a’ leapin’ keeps me awake at night, I decided to create my own 12 days of Christmas gift list. My Christmas wish is that these gifts find you during this holiday season.

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May the first day of Christmas bring you excitement; excitement for the season and for the personal and professional challenges and opportunities that lie ahead over the next year.

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May the second day of Christmas bring you joy in places and situations that you never thought possible.

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May the third day of Christmas bring you chocolate cake; after all, it’s Christmas!

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May the fourth day of Christmas bring you peace; peace to resolve those inner conflicts we all face or to help mend fences with a co-worker or neighbor. The world is overcrowded with angry people. We don’t need any more.

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May the fifth day of Christmas bring you contentment; contentment to help you appreciate that while every day may not be a bed of roses, each day brings with it seeds of optimism and possibility.

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May the sixth day of Christmas bring you more chocolate cake; after all, it’s still Christmas!

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May the seventh day of Christmas bring you frankincense and myrrh, so, finally, after all these years, you know exactly what that stuff is!

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May the eighth day of Christmas bring you (if you’re a Missouri Tigers fan) a Cotton Bowl-pickin’ good time in Dallas on New Year’s Day.

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May the ninth day of Christmas bring you a white dress shirt, size 18 collar and... whoops, wrong list.

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May the tenth day of Christmas bring you the idealism of small children, the energy of teenagers, the realism of middle age and the wisdom of old age.

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May the eleventh day of Christmas bring you happiness. Some will find it in the third and sixth days of Christmas. Others may find the search more difficult but keep looking, it’s out there.

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And may the twelfth day of Christmas bring you a gift so small it would fit under any tree, so large, no box could contain it, so inexpensive, a child could afford it, and so priceless, no one could ever buy it; the gift of time, time to treasure who you have, what you have and why you have it for as long as time will allow.