arianddannie

Archive for March, 2012|Monthly archive page

Post Four

In Uncategorized on March 29, 2012 at 1:30 pm

Post Four

March 28, 2012

8:30 a.m. Sitting in the reception area of NuTech, horns honking outside, friendly “I am here” honking, constant from about 7:00 a.m. I am awaiting Ari’s arrival for physical therapy, dashing down from the Ashton Hotel about a block away, where he is staying until being readmitted here on April 2nd for a final month of treatment.

Dannie has been released from the hospital, and has returned to NuTech.

ari loving his sister

ari loving his sister

The lobby is empty now, rare during daylight hours… typically buzzing with swarms of out patients and their support persons. Children with apparent congenital problems, adults fighting Alzheimer’s, paraplegic patients of all ages. The housekeeping staff is bustling about, bringing out water glasses for the hot day ahead, delivering the two-egg breakfast standard to the rooms upstairs, staff rushing to punch in at the reception desk, patients beginning to stir and come downstairs for physio. A gecko holds fast to the wall above a shrine in the corner.

I have purchased two tokens to have two miniature cups of coffee dispensed from a machine, which turns out to be sugar-filled with little coffee flavor. I have suspended my eating practices here… caffeinated coffee, our organic food stash that we brought from home depleted, fresh stuff requiring extra care in cleaning and only a bathroom to work in. So Dannie is eating cheerios, gluten and sugar included, and Ari has a nagging belly issue from eating “outside.” We are rolling with it!

Dannie’s pain has not subsided, but is differently treated now. Her time at Apollo afforded her the opportunity to try a variety of pain medications less intrusive to stem cell transplant, under medical supervision. The result was that she returned to NuTech on a continuous drip, with other intermittent medications, none of which provide her any real relief from pain for any duration; one can provide sleep when the dosing is ‘right’. Her pain remains 9-10, awaking from sleep with sudden horror of pain at a 10, chasing pain, trying to communicate her needs, trying to survive.  The first sign of her awaking is a gasp, cry and her fingers raised signifying 10, IV lines trailing down her arms. She wears an eye mask, ear phones and sometimes oxygen~ we rarely see her face. Sleep or pain: her two, almost exclusive, states now.

first physio 3.29.2012

first physio 3.29.2012

Dr. Shroff is certain that with stem cells the healing will begin and yield less pain, restful sleep. Days away. A beautiful picture in my mind, my heart.

Ari is making his way. A bit tired the past week. A lot to adjust to. Heat is rising, draining. The stomach thing…Keeping himself busy in service to us and to making a bit of a life while awaiting return to the clinic. He is essentially living in Delhi, alone. I am so filled with joy bearing witness to his emergence.

He has made a few local friends and is learning so much about the local culture. He is conducting an independent study of the “changing face of new Delhi” interviewing a wide range of people, reading, reflecting… Trying to learn some Hindi. Clint, his caregiver remains his daily companion, and I imagine now a friend for life.  Today he is staying in bed, resting. A good decision.

elephant strolling down green park extension seen from Dannie's window

elephant strolling down green park extension seen from Dannie's window

kyler at her side

kyler at her side

kate

unexpected change in plans

In Medical, New Delhi on March 25, 2012 at 12:40 pm

Post two ~ Kate

March 20/21, 2012

The sounds of a string of 20 beeping monitors from curtain boundaried cubicles, the shuffling of feet, ringing of phones, call bells loudly beckoning attention, layers of conversations none of which are in English, occasional out bursts of delirium from the other side of the partial divider wall, clanking of metal garbage receptacles being opened and closed, splattering of buckets of cleaning water tossed across the vinyl floor, muted music, the hum of a floor fan, smell of insecticide are causing me distraction as I desperately, but mindfully, maneuver to protect Dannie’s long fought battle for sleep.

She is in Apollo Hospital ICU.

I have not been able to write due to a cascade of challenges which have been given impetus to by the continuation of the indescribable intractable pain Dannie has wrestled for many years. She daily experiences an 8-10 of bone, muscle, joint, and skin pain which landed her in the hospital 4 times in the past 10 months. This pain, though temporarily managed so that she was able to tolerate the plane trip, came surging back full force, plus some, in the second full day at the clinic. The changes in this pain state anticipated by the work of the stem cells will not take place immediately, and the suitcase full of medications that we carried with us did not provide relief. Even with the gracious help from Abha who massaged Dannie tirelessly and the attentive care from NuTech doctors overseeing trials on the medications available at the clinic, the days and nights were sleepless filled with agony interrupted only by the momentary, short-lived pseudo-calm of exhaustion.

On the morning of March 14th, Dr. Shroff met with me and shared her plan/desire to transfer Dannie to a hospital about a 25 minute drive away, to assist with treating her pain. The intention was/is to remove some medications from her protocol, and to replace them with medications that would be more effective and compatible with HESC transplant.

Day Six at Apollo: Dannie’s  first day was spent in the “day care,” awaiting a room, continuing uncontrolled pain, throwing up, delirium caused by pain, extremely challenging communication… hours. Two staff from NuTech accompanied us there without whom it would have been unbearable. She was admitted to a regular medicine unit, and continued to suffer with doctors and “sisters” working diligently to assist her, without success. By the early morning hours it was determined that they would transfer her to ICU to enable monitoring and to more intensely attempt to address the pain.

Still trying. Dannie is now either awake and in pain 8-10 with an emphasis on 10, pleading for relief and sleep or, when her pain is reduced temporarily to an 8 and she is medicated for sleep, she sleeps briefly, awakening to quickly accelerating pain that prevents further sleep. This see-saw has been repeated hour after hour for the duration of our stay here, with some hours more difficult than others, despite IV pain medications.

The sisters provide  tender and kind  care. We are both embracing learning about the culture and, at times, challenged to communicate urgent information in the midst of pain crises. Dannie astutely observed that here she is initially asked less, but listened to more. Her experiences in four bay area hospitals in 2011, with beautiful surroundings, heralded reputations, and initial great hope were all eventually dashed. Listened to, and reinterpreted, and then dismissed… Here the commitment to not giving up, of caring for her, of responding and instilling hope is a welcome relief. We are rolling with the limitations of the environment, space, equipment, language ….sometimes better than others. Waiting, when pain is rising, adds to the suffering. Repeating consumes much energy, trying to communicate linear priorities critical to pain management, to explain that though kindness is intended, touching hurts, light hurts, bumping the bed hurts, voices that are too loud hurt, and being instructed “don’t cry, don’t cry” when Dannie has spent years stoically suffering and is finally allowing, or perhaps unable to hold back tears of pain, provide both new and well-known challenges, intensified.

Can’t wait to get “home” to NuTech and resume treatment that had just begun…

my bed at apollo icu

my bed at apollo icu

Dannie with sister, Angum. amazing loving care

Dannie with sister, Angum. amazing loving care

Ari is dashing about with Clint, his caregiver, playing tourist during his hiatus from treatment. He is growing in his local knowledge and comfort level. He visits us nearly daily, carting things back and forth between the clinic and hospital, a 25 minute ride away from his hotel across from NuTech. Today, however, he is a bit tired, and has agreed not to come, but to take a day of rest.

Ari’s back continues to be free from pain, and his new-found energy enables him to have activities in each day. He continues physio at the clinic, visiting with his “Delhi family.”  The relief from longing for us to all be together postponed, he continues to absolutely make the best of each situation, each day. This has been a rite of passage, of sorts for Ari. Despite circumstances which proved challenging, he has remained focused and steadfast in his direction and commitment to healing.

Post Three

March 23, 2012

Still at Apollo. Trying to find medications that will work to get Dannie back to NuTech. Unclear what will happen, what is needed. Episodes of brayacardia.  Still spicking to 10 (pain scale top) daily. Never below 8. Tries to lay perfectly still so not to stimulate pain. Can’t tolerate touch much of day. Eye mask and reverse noise earphones. Eating and going to bathroom causes pain spiking.

Stepping forward in faith each day with our eye on the goal. Suspending needing to know. Being in the moment, loving each other with tenderness. Missing Ari.

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28.

to the ends of the earth

In Uncategorized on March 20, 2012 at 3:35 pm

3/9/12 to 3/11/12

Post One ~ Kate

To the ends of the earth…..

It is six a.m. I am reclining on a futon a few feet from Dannie’s hospital bed having sleep allude me all night. The college dorm sized refrigerator next to my head is vacillating from a hum to a percolator… bubbly then hissing… oddly soothing against the back drop of the early morning birds, automobile horns, the white noise of the air conditioner. Dannie is seemingly finally resting, I hear an occasional deep breath, but unlike when she was a baby and satisfied from nursing and we would both drop off to sleep for the two hour break, I am wide awake, with swirling thoughts and feelings competing with the ambient sound. We are in India to save her life.

Gratitude~ a string of miracles culminated in us arriving here, on the other side of the world. I am in a state of awe and wonder. Ordinary middle class, Santa Rosa girl. Nothing extra ordinary about me, or my life, until this surreal unraveling of Dannie and Ari’s health swept us up, rearranging everything measureable… the only thing left in place, seriously challenged but remaining,  is our love for God and each other and belief, despite circumstances portending the opposite, “that all things work together for good…”

We have been shown extraordinary love. When I think of it, I still can’t grasp it. I know I will be unable to express the ineffable gratitude to each of you, for prayers, for kind words, for grace when I have been less than I wanted or you wished, for practical help, for listening, for standing the gap when this all was simply too big, too long, too much of everything.

There have been twelve years of agony, floundering, finding our way only to have the path cut off again, twelve years of the “nothing else could possibly happen” with something else happening, the torment giving entrance to twelve years of miracles bringing us to this moment.

The last few days before the departure~ travel donated in full, hours of calls and coordination to get the right flights, the right lay over, the right seats- a crew of self-selected and recruited saints (although some would say they were “called”)  put aside their lives to make saving Ari and Dannie’s  life possible. Denise running from place to place gathering medicine, finding lost paperwork,  a dozen other things, scooping up our kitty for care while away, arranging for us, with help from her sister, Diane,  to be ushered like celebrities from the curb to the plane (by way the British Airways first class lounge a glass of merlot and cheese, thank you Lorri, Harold and Wayne),  Dannie being escorted by Dr. Brandeis who made sure she was as comfortable as possible on the flight to Ari having arranged for a car, days in advance and personally checked out and instructed the driver as to what his sister would need so that her suffering would be lessened by as smooth and calm a ride as possible. Sheila while available and willing to return to India when needed, now providing a vacation to our dogs, Lily and Wesley, and Glenn keeping the process going at home, to move toward the required follow up care. This has taken more than village…Lyme Light Foundation and hundreds of donors who opened their hearts and contributed to making this possible. So many I haven’t mentioned here…

Denise and sister, Diane in the British Airway Lounge before flight.Dannie, Kyler and Annegret awaiting flightDr. Brandeis (Dr. Awesome) and Dannie on airplane upon arrival in India

To see Ari, again! To embrace him, to observe the tender reunion of Ari and Dannie, and see him fully engaged in life!! Living in New Delhi, on his own, with a month off from treatment. He will have an additional month of transplant in April. Ari carefully paved the way for our arrival, with his two month of experience he was able to ensure that each detail was taken care of, the clinic “knowing” his sister already, taking charge and having the energy to do it.  Dannie next.

The first few days were rough, Dannie’s pain unrelenting. Hours of unspeakable suffering, no sleep. Yet, when the nurses, called sisters here, and doctors ask, she reports her pain, but always ends, “but I am so happy and grateful to be here.” She has begun treatment and a new medication to manage her pain seemed to be help some today.

Day two

Ari is staying across the street, and will return to NuTech the first of April for his first “follow up” treatment, saving him a trip back and forth and allowing us to be together during this most meaningful time.  It is beyond expression what it is like to see him dashing up the stairs, free of back pain for the first time in 12 years, with energy to carry him through a full day.

Abha, Dannie's caregiver, Ari and Dannie at NuTech

Signing off for now. Finishing this writing at 3:04 a.m. New Delhi time… and very happy.

K

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