Archive for April, 2012|Monthly archive page

first days 025

In Ari, New Delhi on April 30, 2012 at 6:42 am

first days 025

Send off January 2012

retracing Blues…

In New Delhi, Uncategorized on April 30, 2012 at 6:26 am

4/20/2012 or 20/4/2012 here in India

Retracing Blues

Ari has had a few intense days of retracing…. After years of attributing exacerbation of symptoms to herxing, or die-off, attributing the seemingly same experiences to the stem cells settling in and HEALING is a welcome redefinition/understanding of otherwise difficult to cope with discomforts. Nauseated, sweating, dizzy, shooting pain, exaggerated startle responses, down mood, … and in Ari’s words, compounded by “end of journey jitters.”  Shifting through all the learnings and implications of this profound experience will undoubtably be fodder for reflection for the duration of all our lives.

It is past eleven in the morning~ I have consumed the morning poached eggs that are the NuTech standard and generally are rejected by Dannie, Ari and Kyler. Each morning a version of eggs arrives at the door… releasing the morning egg smell that is, well,  less than pleasant. Ari has made instant oatmeal which he has grown so tired of. Dannie has become “addicted” to Tiger Crackers, a rectangular version of children’s crackers, sort of tasting like a combination of animal crackers (not the gluten free, organic version…) and vanilla wafers. Oh, well….

I have just cancelled for the third time, an appointment at Asian Roots for Dannie to get her hair done. She is anxious to have it relaxed somewhat to prevent the matting that has happened repeatedly when she is in bed for days on end.  One of her amazing strengths is to keep planning for each day to be better… thus the repeated scheduling. She/we will try again. Pain control continues to be too limited to assist her in getting out of bed to venture to the salon, while waiting for the stem cells to provide healing. Cascades of symptoms from the past twelve years being played like a repeating octave up and down and back again. Minor clanging, crashing, pedal down.

We have happy news:

Dr. Amiram Katz it here! ( He has spent time with Dannie and will meet with Ari before he leaves.  Another unrequested gift! He is warm, kind and knowledgeable, and had a soothing impact on Dannie. His Lyme knowledge was a welcome addition to the care she is receiving, as well as his experience with pain and sleep disorders. He had some valuable perceptions of, and treatment responses to, Dannie’s condition that we believe have yielded some, albeit incremental,  improvement in her pain symptoms. Today he will be speaking on the use of IVIG with neurodegenerative diseases, a presentation he has not done before.

All for now, more later with pictures. The day is demanding my active participation which does not include sitting here  a minute longer.

Hugs and so much happiness,


Yet we go forth…

In New Delhi on April 24, 2012 at 2:10 am


April 22, 2012 (can it possibly be?)

Hello All,

It has been some time since I posted, with several attempts which did not gain enough momentum to be completed. My wish is to have happy news, unrestrained. In the absence of that, and due to continual demands here, I have not been able to carve out the time to sit at the computer and sift through all that is happening and construct it into words. Many twists and turns, many obstacles, many moments of exasperation, yet we go forth.

Naked truth this morning: Dannie continues in excruciating pain. She is in a minute to minute survival experience still. ~10~ pain, throwing up at 3 a.m….We herald the moments when she is able to break free enough to have a moment of extraordinary, approximated, normalcy… like sitting up in bed and chatting about something other than pain, like laughing at a “America’s funniest home videos”-yes, in Delhi, like a breif venture out in her wheelchair that took days to work up to, like eating a meal and not paying for it with paralyzing pain or throwing up.  Sliding sideways, baby steps toward normalcy… and we rejoice.

Holding On

Holding On


The stem cells are working, as indicated by retracing… waiting for the relief to come. We know it may take several trips, yet we still expect and have hope that some relief will be eminent.  More so, we pray for sudden, miraculous and complete healing to trump all other efforts.

Ari is retracing some of his most difficult symptoms right now, as well. He has the recent memory of feeling great to easily recall… while working through the return of nausea, exhaustion, hot and cold sweats, altered cognition,  shooting pain… to name a few.  He is having “end of journey jitters” wanting to be home right now while at the same time wanting to stay to focus on pursuing some business ideas he has for pro-typing a handbag line that he has been sketching for some time, and exploring manufacturing options. Next trip!  Ideas abound, time and energy are limited!

getting ready for procedure

getting ready for procedure

I am great. I am! I have moments of grieving, moment of sadness, moments of cell-shaking tears, moments of feeling that I cannot watch/hear/sense my son or daughter suffer one more thing, one more moment of distress of any kind, one more parried effort to reach out toward life, one more aspect of human existence again deferred, one more insensitive comment or action, one more admonishment that change is coming, is coming, is coming for twelve years and counting. Yet in the midst of this, I have many more moments of quiet, settled, resolve to see this through, whatever comes.

Then there is joy… which springs forth in the midst of writing, talking, or reflecting on the horror of it. Side by side… the endless sadness and boundless faith and hope.

My mantra continues to be faith, not fear!  as a prayer, as a meditation, as a reminder to breathe, as a reminder that there is always always always choice.

Spring outside the window

Spring outside the window

Ari is returning home May First!!!!! I miss him already. His presence, his smile, his attention to logistics, his insistence on excellence for his mother and sister … his love expressed clearly and directly have been pure joy and sustenance for me.

walk on green park

Treatment concludes on the nineth.~Kyler will return around the tenth as close to when Dannie and I leave as possible…  taking care of Dannie with dedication, patience and humor. When we left Belmont, we anticipated that I would come home after a month, and tag-team with another caregiver for Dannie. Her deteriorating medical condition made that impossible, thus I am still here with Kyler’s much needed help. Because of her unexpected stay in ICU , her treatment period was extended;  our original flights to return now obsolete.

Kyler by Dannie's side

Kyler by Dannie's side

We are now having difficulties with securing flights with the remaining air miles for the two of us, and not certain yet if we will need a doctor to fly with us, as we did on the way. As it turns out, we do not have enough air miles for the two tickets (as her pain and sensory sensitivity to noise, light, movement, and touch…still requires First Class to be in as quiet, calm and restful environment possible) We had hoped that Dannie’s pain would have subsided enough to feel confident that the two of us could go it alone without a doctor, and her condition would not require First Class. Doesn’t appear so at present, and we have no MD on board for the journey

That said, if anyone has any air miles to help that would be fantastic. However, we are finding that air miles are not that easy to use, as there are limited flights available to be “purchased” with air miles… so it may be that we find ourselves having to purchase tickets. That is in the context of needing to get home as soon after the ninth as possible.

More Adventure~ More prayer!!! (and faith not fear!!!)

Going Forth!!!

“Do not grieve, for the joy of the LORD is your strength.”
Nehemiah 8:9-11

Easter’s Promise

In Uncategorized on April 9, 2012 at 10:56 pm

Rebirth~New Life

I awoke at 7:30 a.m. hurriedly dressed in my new kurta and ventured out in the already hot day… 80 degrees maybe? The streets this Easter Morning are quiet. With fewer people filling the streets, the condition of the surroundings, the remnants from the prior day…  garbage strewn about, smoldering piles of garbage, newspapers, construction materials, piles of all kinds, buildings in various states of disrepair, all much more noticeable. “Ari’s puppy,” one he has been feeding since Sheila and his arrival, is wandering down the street, now sporting a red collar, indicating the love that Sheila and Ari gave was carried on by a local person, and she is no longer a homeless dog. The bowls that Sheila bought to feed the dogs, still on the sidewalk, filled daily for the dogs that live on this corner… eating better than some people close by.

We had all hoped to go to the local Easter service,  but the healing process is following it’s own schedule, so I went alone  while Ari and Dannie continue to allow healing to occur. I arrived to find that the service was in Hindi, walked home visiting tombs built in the 1300’s and back again , later to the English service. While I was unable to understand all of the message, sandwiched between families, overflowing to outside, the heat was challenging me to stay hydrated, and conscious… the message of Joy that surpasses circumstances was affirming of my experience.

Dadi-Poti's Tomb on Easter Morning Walk

Dadi-Poti's Tomb on Easter Morning Walk

After church,  Ari met me for a latte at Coffee Costa… the Delhi Starbucks. It being my birthday, Clint, Ari’s caregiver, came by on a friend’s motorcycle, to deliver a beautiful bouquet of red roses and yellow gerber daisies… more than a day’s pay and so unexpected, and a heartfelt card… Ari presented a card, as did Dannie and Kyler later in the day… the sentiments of which deeply touched me… I am so blessed with love.

Birthday Flowers from Clint!!!

Birthday Flowers from Clint!!!

Easter celebration at the Clinic

Easter celebration at the Clinic

Dannie was unable to get up today, so Ari and I went to dinner… on a roof top, a wonderful restaurant atop a building that is more than 3/4rd empty, and largely unfinished. The air was still atleast seventy degrees, and wonderful.

Monday Night:

Dannie is resting just now, a welcome relief after forty eight hours of no real sleep, no hiatus from pain at a “ten”. She is resting, not sure if sleeping… and certainly will not risk checking!

Too often lately I have thought her to be sleeping, only to find later that she was fully aware of everything, but trying so hard to rest, and sometimes immobilized by pain and/or unable to speak or move. Other times she is in a sleep/awake state of vivid like night mares, that seem so real that they are like hallucinations, but not really. Not restful either. She has had two episodes of four and five hrs of sleep since our arrival. Everything else has been forty minutes to two hours at best.

Clearly and certainly, that we are doing the right thing. While her suffering continues, this trip has saved Dannie’s life. The path she was on with American Medicine opportunities was spiraling downward. We are all so grateful to be here and believe in the healing that is happening and witnessed.

That said:  Dannie has been to putting everything she has into handling pain levels that do not go below nine and a half, and little to no sleep; she has accomplished taking two showers (enormous events of shower chair, building a dam so that the water doesn’t spread all over the floor, ninety minutes of trying to untangle and comb her hair that has been knotted in a five inch wide dred lock which threatened to require her hair to be cut) slow, laborious, body temperature rollercoaster, sweating \ shivering, painful shower… and three times she has been able to totter and tilt into the wheel chair to leave the room, each for about fifteen minutes. That is it… since we arrived.  And those times have been glorious and celebrated. She hoped to go to a shopping mall saturday night, but the shower literally took three hours, and that was it and beyond what she should have done. She has been “paying” for it since then with pain. If she moves her limbs in the bed, it feels like rug burn to her. She tries not to move to avoid muscle joint and bone pain… the noise from outside which is constant, is a form of torture, and her body heat regulation problems are being tested with the imposing heat. None the less, she agreed to a brief session of occupational therapy today which amounted to a face massage-like treatment and exercising her hands. Physical therapy wasn’t possible today.

It is a delicate balance between trying to give the stem cells the best environment and to manage her symptoms, goals which can be at cross purposes.

All that said, there is progress, if it is only that she is coping amazingly with higher levels of pain, while the stem cells are being pumped into her and are staking out their new “worksites” The sixth week is often pivotal for lyme patients… that is next week. That said, we met a German patient today that has also been sick with Lyme for twelve years, and she did not experience improvement until six weeks after getting home. She is back for her second round now, and though improved, she is still on the uphill climb, thus the need for several episodes of treatment for patients who have experienced years of damage from Lyme.

The goal is to have this trip (dannie’s first and ari’s first and second rolled into one) paid for by the end of August, so that we can focus on raising funds for Nov/Dec return trips.

After an amazing experience of reduced pain and increased energy, Ari is now experiencing an expected dip in improvement and return to retracing. He is pretty tired, back hurting again, and more stressed with Dannie and me here.  He cares so much for Dannie, it is hard for him to see her suffering. We are talking a lot about his support and love for her, and him protecting his own healing process. Pretty challenging stuff. With the anticipation of being better, and having “tasted” it, he is beginning to try to conceptualize how he will proceed in his life. This has led to some anxiety and sense of overwhelm about how to pick back up his life… so much missed, so much to do… trying to challenge the concept of “catching up” and deal with the normal feelings a twenty four year old man feels about wanting to find his place in the world, to accomplish, to contribute, to be independent…. He desperately does not want to return to life the way it was… and has yet to test out how his body will function… it will be a transition, and take patience… physical therapy, learning to find an new balance and process for self regulation… decisions about continued lyme treatment, school/work, working toward returning to India and continued stops and starts in his life rebuilding process.

Skyping Michael at Home

All great and welcomed challenges to face! but daunting.At the onset of improved health does not come a “normal life” but a new set of challenges. He won’t be dropped into a 24 year old’s life, and can’t pick up where he left off at 12 years old. It will have to be a “one of a kind” development with more learning about acceptance, flexibility, and wonder.

Lots of prayer, lots of listening, lots of handing control over to God… again and again.

Joy is a part of every day. Deeply Experienced Every day. Love is billowing around and in us. There is peace among the turmoil. There is laughter. There is contentment There is tremendous awe. We continue to be in awe that God has brought us this far, and has enlisted so many people to help. We pray for sleep and reduced pain. For healing on all levels: physical, emotional , spiritual, financial, educational, occupational… even recreational HEALING!!! And it is happening right now…

love kate

Physio Therapy

Physio Therapy

Our laundry being returned to the Clinic

Our laundry being returned to the Clinic

Kyler hanging out in Ari's room

Kyler hanging out in Ari's room


Pictures through 4/5/2012

In Uncategorized on April 6, 2012 at 2:01 pm

Palm Sunday

In Uncategorized on April 1, 2012 at 10:06 pm

Palm Sunday


Post Five

April 1, 2012 Palm Sunday

Spring. New beginnings. Celebration of rebirth.

O Christ our God

When Thou didst raise Lazarus from the dead before Thy Passion,

Thou didst confirm the resurrection of the universe.

Wherefore, we like children,

carry the banner of triumph and victory,

and we cry to Thee,

O Conqueror of Death,

Hosanna in the highest!

Blessed is He that cometh

in the Name of the Lord.

Little baby stem cells making their way to their new homes… ready to burst into life. True healing. Rebuilding…

We are grateful~ God-designed life… not a drug,  but the basic element of human life. Billions in Ari’s and Dannie’s bodies, programmed by their/our Creator to evolve perfectly into what is needed.

Each day we are dying to old things and giving birth to new. It is required here. Letting go, if only temporarily, to old and familiar ideas, old comforts, food, smells, sounds, sights, concepts, ideas, ways of being…. Opening to new, changing, perplexing circumstances, requirements, causes and effects, rhythms…  Open to each moment. Sometimes feeling like we are free falling, but with the comfort of knowing that we have a safety net woven of faith and evidence of so many miracles.

Dannie has experienced some progress!!! Thursday she muscled herself into a wheel chair to get outside her room and see, at least the building, where she is… we sat outside NuTech for a few minutes before going back inside. It was celebrated by the doctors… taking pictures, making them the screen saver on the community computer… joyous. No holding back with “professional distance” but clear celebration and proclamation of their excitement. Friday she sat in the shower by sheer force of will, for the first time in months, perhaps four, and Saturday she was able to tolerate having her hair combed out by Abha, who was a miracle worker. We anticipated that the mats would need to be cut out, leaving her without her long hair, so this was also a cause for celebration.  

Abha and Dannie

Abha and Dannie

Abha’s handiwork

Intermixed with these milestones, she is experiencing continued pain every waking moment. The pain is changing and we are wondering if it is evidence of “retracing” a phenomenon wherein Lyme patients receiving stem cells re-experience past symptoms as the stem cells settle into areas of injury. For Dannie there are 12 years of very painful and difficult symptoms… Wednesday and Thursday she had myoclonus, and a long episode of seizure-like experiences which were very painful, straining, every muscle tensed and rigid, hands locked in fists, and completely exhausting. They seem to have passed, leaving the pain of the extreme straining in their wake. Her most recent searing burning pain seems to have been traded out for migraine, auras, nausea, and deep deep pain encapsulating her whole body. Her vision is much compromised, making seeing difficult. And noise is, at times, painful. We must be very careful not to accidently bump the bed sending waves of sharp pain through her body. Her veins are protesting holding IV lines and she has been accessed more than 20 times in the past two weeks. Her picc line came out, we believe due to her being moved by well-meaning nurses/MD’s at Apollo trying to get her on a gurney. Sleep has been elusive. No complete sleep cycles since Wednesday when she was able to sleep for four to five hours for the first time in months.

As I sit here, in the dim light of room with shades pulled, the hissing of the air conditioner, and ever present honking horns, she is now sleeping, or appearing so. Often it “looks like sleep” but she is not … just lying as still as possible so as not to stimulate any pain by movement. When the pain is at its highest, she does not even dare move her mouth to speak. Sometimes the only evidence of her wakefulness is a tear on her cheek and a soft, almost inaudible moan. Her pain visible: the sweat on her face, a furrowed brow.  Later she will report awareness of being awake… having been trying to disassociate from pain, meditate, breath. Like the relief that comes from a baby finally falling asleep after hours of crying: walking, patting rocking- we don’t dare verify if the stillness is sleep or another less restful state… we guard the door to minimize interruptions, do not disturb on the door… with the exception of the sisters bring medication.

Ari and Kyler are having a home cooked lunch somewhere in Delhi with a new found friend of Ari’s, Yudhisthir.  The heat is penetrating, sneaking up on those of us not familiar, requiring quantities of bottled water and mindfulness about hydration that surpasses our already practiced water consumption. After lunch Kyler hopes to shop to find some “pajama pants” to allow for a cool alternative to jeans, which really have no place in this weather.  Ari has acquired the traditional dress, which delights the MDs and sisters. He will move back tomorrow.

My heart is full.

in our bathroom today

in our bathroom today


First time out of room 203!

In Uncategorized on April 1, 2012 at 8:42 pm

First time out of room 203!

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