arianddannie

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September 2013 ~ Holding On

In Medical, Uncategorized on October 3, 2013 at 8:22 am

September 15, 2013

“Nothing like a hospital stay to start writing again”— not so this time. Minutes to hours to days, filled, non-stop, surreal.

Dannie’s new found improvement was/is exciting and encouraging. She has found her treatment of choice for this leg of the journey, improving her overall health, supporting the developing stem cells, beginning to see a filtering of light at the end of the tunnel.

Excited to visit home with her improvements, spend time with family/friends, get a few appointments completed, gather some things and return to Wichita for continued treatment… she journeyed home, by plane~coach not business, able to sit up! and ride in car…. something impossible for years upon years. Two days before she was to be here, we found mold in our home, resulting in Dannie not being able to sleep in her own bed, but in a hotel…  Unexpectedly, the break from the treatment which was so healing and helpful, the travel, and a few other challenges, seemed to give way to a return of her spine and body pain…

Blow torch up and down her spine, electrical shock pain streaking and jolting through her body, feeling of broken bones, shattering with weight bearing, movement. Nausea, sensory sensitivity, hot and cold,  migraine….Efforts to arrest it, reverse it were unsuccessful, resulting in two trips to the emergency department  and a third visit, admitted and inpatient, for nine days thus far. ICU followed by a step down unit, now on an Acute Care Unit. An episode that was excruciating to witness, I cannot fathom what it is for her to experience. Home, back to the emergency room, not once, but twice, last time the night Ari was flying to India… I stood in the hallway, quietly talking him through nausea as he had a 5 hour layover in Korea.

I can’t write about Dannie’s ordeal—ordeals— now. It is too much.  I am too weary from witnessing such suffering and the unbelievable and exhausting episodes of hospital groundhog day…

Plan: To get thru this – to find a way to quiet the pain and for her to get back to the treatment that was serving her so well and to stay longer, to allow stabilization, and the solidifying of her progress.  Somehow. Some how. Some how. Soon. Holding on. Sometimes wanting to let go, then holding on some more.

first newsletter

In Uncategorized on December 3, 2012 at 9:45 am

NEWSLETTER final PDF 11.26.12 noon

August 5, 2012

In home, Uncategorized on August 6, 2012 at 8:46 am

I should have known better than to promise to write more “tomorrow,” now over a month ago. Whew! Every moment is vied for. How I would love to sit at the computer, sorting through this adventure, committing to writing the complexity, the gifts, the miracles, the revelations, the steep inclines, the mogul covered hillsides, the storms, the droughts, the deafening silence, the pounding thunder… It does not seem real, yet too real. Santa Rosa hometown simple girl. Nothing simple now. Yet, in many ways, more simple. For me, I have narrowed my focus to this: The most important thing is love. If, in a day I love God, if I love others, if I remember that is the most important calling and act congruently, it is a good day. To me, loving is not limited to a feeling, but is a verb, is not contingent upon circumstances, health, intelligence, memory, resources, plans, not even shelter or food. Love is possible independent of anything, free, unlimited.

Ari and I have been enjoying our house and garden every day. EVERYDAY, thanks to the Central Peninsula Church makeover. I awake in a bedroom that feels cozy yet tailored and orderly like a hotel room (a good thing), bright and cheerful… evidence of such love. Ari and I have had evenings sitting in the garden, though not nearly enough with the windy Belmont pseudo-summer.  The love invested in our home, welcoming each of us upon our separate returns is lingering…permanent, and still causes us to feel surprised and reminded daily that we are not alone. The transition home is hard to articulate, and the newness and warmth of our home, infused with love, eased the re-entry.

Ari is slowly, but surely, moving forward. While his sense of well-being has not returned to the level he experienced in India, is pain continues to be less, and his “productive hours” are improved. He is holding at about 30-40%, getting dressed every day, facing the challenge of figuring out how to start from scratch to engage more fully in life. We are all working to listen for God’s voice and direction… He is teaching himself bonsai, spending time in the garden, and spent some time in the outdoors last week. He marveled at the water bugs, the sound of wind in the trees, birds singing… celebrating the amazing world we live in, from which he had been cut off from for so long. Pure joy!We are so grateful, encouraged and fully anticipating his continued healing as the stem cells mature. We are still planning for his next trip in December, funds permitting. He has registered for classes in the Fall, confident that he will be able to work away at his General Education requirements. Yeah! It is no longer “light at the end of the tunnel”~ there is now light IN the tunnel.

At long last, Dannie and Kyler are back! After weeks of them waiting in 115 degree heat in New Delhi, managing her illness, while Lorrilynn and I worked to arrange the trip back— to find a doctor to travel to India to  monitor her condition and manage her pain on her flight back; and then, to coordinate return flights for the doctor, Kyler and Dannie became a challenge of larger proportions than I could have ever imagined.  Getting a visa for the doctor took weeks; attempting to use air miles while having very specific needs and timing,  proved a puzzle not to be solved. After six weeks of daily checking flights and prayers for direction, it was clear that saving the air miles for the next trip and getting Dannie home needed to happen imminently. With the visa in hand, flights purchased, and without medical clearance, the doctor, with gentle but firm persistence, negotiated Dannie onto the flights, and they all arrived safely home on July 16th.

We are celebrating that Dannie’s neurological functioning and vision have  improved and expect that it will continue to improve. However, the bone joint muscle and skin pain are not yet relieved. While it was anticipated that she would need a series of treatments, we still anticipated some remediation of her pain sooner rather than later, which would have the most dramatic impact on her quality of life. This is tough.  While being so grateful for the cognitive improvement, it has come with her increased awareness of her experience of pain and clearer focus on her “situation.” Needless to say, this is a challenge in and of itself.

Last week began with a start. Saturday Dannie’s pain continued to escalate into Sunday, necessitating guidance by two of her MD’s, praying to find some way to help, outside the hospital. She was having a very difficult time, requiring attentive loving care and support.  She started a new pain approach last weekend and continues to believe that as the stem cells heal the damaged areas in her brain, when the pain center heals, her pain will subside. She has made incredible progress in eliminating the most concerning medications from her protocol. We are considering/researching many alternatives to help her with the pain and physical therapy, in the interim between trips. Most decidedly, this is the preeminent issue right now as she is in 24/7 pain… on the pain scale a 9-10… nearly all energy/attention demanded to cope with the pain.One tough girl!

For those who asked: All the funds raised have been spent on the treatment and associated costs and credit cards nearly are  at their max. With three unanticipated admissions to the hospital including 11 days in ICU (not covered by insurance), and an extra month of treatment for both Dannie and Ari, extended stays, additional caregiving required, and unexpected purchase of airline tickets…. The only card with a balance available for the return flights and extended lodging was American Express. With the full knowledge that there not being sufficient funds yet secured to fully pay for the necessary expenses, had I(with an amazing community around me) stepped forward in faith to secure Dannie and Ari’s treatment. While the funds were not fully present, the clear direction was~ results of the prayers of many, clear road signs, doors opening just as we stepped forward, but many times, not until we stepped forward in faith, with confidence not in ourselves, but in God.

So last Monday, I checked the American Express balance, uncertain as to how this would be covered, due in three days.  As has been the case throughout this journey….Tuesday I unexpectedly received an email letting me know about the receipt of an extremely generous donation to help with Dannie and Ari’s medical care. I was able to pay the American Express bill on time. Miracles upon miracles… God is Good… and thereare so many amazingly loving people in our lives, without whom Ari and Dannie would not be turning the corner toward healing.

I am humbled and not sure how to fully express my gratitude. I have always been grateful that God entrusted me to be Dannie and Ari’s mother, yet at times, I have not lived with the certainty that God will provide for the challenges that have arisen in meeting this responsibility and joy.  I have missed times of peace, when I could have been resting in the knowing that God would provide. How different it is to know, not just hope. There is more freedom now.

Ari and Dannie are on their way. I believe Dannie’s life has been saved, and Ari is solidly on his way to restored health.  Onward.

Next week my high schoolmates are having a fundraiser: golf tournament friday and barbeque saturday to help us raise funds to continue to pay for the treatment provided thus far, and to look forward to the future trips to complete the transplant process.  Thank you to Glenn Pope for leading this amazing initiative! http://www.montgomery73.com/3/events.htm

Just before posting this, for the first time since she got home, Dannie was able to get up and get dressed! This is a very big deal, taking several hours. She is amazing!

Golf Tournament Flyer

Ari & Dannie Picnic Flyer

ari’s camera nu tech april 19 2012 021

In New Delhi, Uncategorized on May 10, 2012 at 10:10 am

ari's camera nu tech april 19 2012 021

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! (http://www.actionlyme.org/amiram_katz.htm) 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,

Kate

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!

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

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