arianddannie

Archive for October, 2013|Monthly archive page

update from India

In New Delhi, Uncategorized on October 14, 2013 at 8:46 pm

Ari had placed an epidurlal catheter today as the route of transporting stem cells directly into his spine over a three day period, during which he would remain in bed. This is the biggest of all the procedures. At the first “top off” after the catheter insertion, it was found that he had a clot and the line had to be removed, followed by six hours of obseration in bed. Restless but feeling well. It will be rescheduled.

A patient that Ari met on his first trip is there again with him! a Wonderful “Coincident”~He is there for a spinal cord injury, having had no movement or sensation in his spine and lower body for over ten years following a sporting accident. Yesterday he reported that the first trip he had gained sensation from T11/12 to L1/2 and could feel the needle. This time he had full sensation at L3/4 !

Witnessing such miracles.

October 17 Ari’s Birthday

Ari's birthday at NuTech

Ari’s birthday at NuTech

2013 ari birthday eating cake 2Three Cakes! Lots of laughter, Tons of Love

Transplant underway!

In Uncategorized on October 13, 2013 at 8:58 am
India Exploration

India Exploration

Ari Getting Stem Cells!!!

Ari Getting Stem Cells!!!

Ari, in India for stem cell sporting his LymeLight T-shirt

Ari, in India for stem cell sporting his LymeLight T-shirt

ari and his nurse/friend, clint.

ari and his nurse/friend, clint.

From Ari:
“It is with excitement and gratitude to God and all those that have contributed that I am able to share that Dr. Shroff is confident that after this month of treatment I will not require any additional stem-cell therapy, save being reinfected with Lyme.

My initial spect scan taken upon my return for a third round of treatment has shown that the stem-cells have continued there work since my last trip to India – and show an impressive improvement over the last scan from my second round of treatment.

The expectation is that over the next 9-11 or so months, the new stem-cells will continue to move, grow, and develop, and that this process will lead to completed recovery and the opportunity to at long last live a more full life!”

Ari is half-way complete with his second trip to India for HESC transplant… excitement and challenge… up days and less up days. Being there is a blessing, missing having family and significant others there to face the procedures, share the adventure and to process the events of the days has been daunting at times. That said…. phone, skype, email has kept us close in contact. This week Ari will have a three day procedure, with an epidural catheter and pretty much bed bound, finished just before his birthday on the 17th.

Help With Housing… Leads Welcomed!

In Uncategorized on October 3, 2013 at 8:29 am

Mold… Yes, Again: With mold discovered in our home, we now have a clue as to what may have contributed to the loss of some of Ari’s progress upon his return from India last year, and we will not be able to continue living in our home, rented, but our home for 12 years or so. With mold being the first event that thrust us into the health crisis we have been facing for 13 years, we are all too familiar with the devastating impact on health and the need to move expeditiously.

We must find new housing as soon as possible… we have a dream of owning our own home again~ our cozy home lost with the cascading effects of mold 14 year ago, and necessity for me to stop working when Ari and Dannie were young, sick and in need of my care and presence. I was so thankful at the time to have the remediated house to sell to allow me to stay with them for a while. However, now, our desire to have a stable home, a healing place that we can nestle into, invest love and care, rest, and welcome others, has surged to grand proportions. I have so missed this sense of HOME and ROOTS. Ari has lovingly tended the garden and the Central Peninsula Church generously made over our home when we were in India… he is grieving the loss of his carefully nurtured plants, and sad to anticipate leaving the signs of love from the CPC community. It meant and means so much…visible presence of God’s care.

We do hope for some dirt… some place to ground, and grow… some place to feel secure and at ease. Though it could easily be a source of fear and anxiety, we are focusing on excitement and anticipation for what God has in store with this unsought/unplanned move. The peninsula housing market would deter us, but we know that supernatural things can happen…Thinking outside the box and outside of what seems likely or possible!!!

So, now to the list, prayers for supernatural guidance and direction for our house hunt! And Any Leads are Welcome!!!

Onward….

Joy. Ari has Arrived in Delhi

In Uncategorized on October 3, 2013 at 8:26 am

Joy: Ari returned to India on September 30th! He is late in returning for the necessary follow up treatment, and so grateful to be able to go. He will spend his 26th birthday there… and the celebration of the birth of new stem cells…

With a continuing and progressive illness that Lyme and co-infections can be, repeat treatment necessary to out run the disease process. Ari has experienced some return of symptoms, though not to the depths of where he was before. That said, he expects to close the gap back to his highest level of functioning with the next transplant, and to retain the progress. It is uncertain if this will be his final transplant or whether or not he will need any additional treatment.

In the interim between treatments, he was able to attend one college course per quarter and received one of 12 annual awards for exceptional students in the Science and Math Department… his second one!  And nothing to do with his illness or “disabled status” but his student status!!! He has continued to garden as therapy… fruit trees, bonsai, a bit of everything… and he has taken up photography recently.

untitled

This trip to India he will sorely miss his travel companion, Sheila, and travel alone. His improved health allows this! While he would very much like a loved one to be with him, he is mindful of keeping the cost down. Clint, his dear nurse, brother, in India, will be with him through his stay, and a patient he met last time, will also be there for follow up treatment. He has other friends there, Pawan, a PhD student he met at the University of Delhi. He hopes to take lots of pictures, welcome and nurture the stem cells,  and return renewed and improving.

ari on his way to india with mike and wayne 9.30.13

Ari, Wayne and Michael at Airport : Departure for India 9/30/13

Kate and Ari at SFO 9.30.13

Kate and Ari at SFO 9.30.13

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.

August~ People Acting as Angels

In Medical on October 3, 2013 at 8:20 am

August 26, 2013

Dannie is across the room sleeping, a hotel in San Mateo, back from Kansas and can’t come home because we found out last week that our house has mold. Ari must not return here after his next trip to India for human embryonic stem cell transplant in October.

Yes. Twice in our life we find ourselves urgently in need of a new, mold free home.  This whole ordeal started with a flood in our house, mold, sickness, hotel, dispose of EVERYTHING that might have mold spores, which is essentially everything, pull down, rebuild, sell….rent…… and mold.

Dannie’s trip to Kansas was successful…while slower progress after the surgery there is again improvement, more life, more hope. Dannie’s current wish is to return to Kansas for continued treatment. This may need to be for an extended length of time and we are exploring options to allow this to happen.

Dannie and Dr. Jernigan 2.21.13Dr Jernigan and Dannie

Dannie in the Wichita Snow... Taking Walks -- PLURAL---for the First time in Years.

Dannie in the Wichita Snow… Taking Walks — PLURAL—for the First time in Years.

Meanwhile, back at the ranch….. Ari is gardening, resting, taking pictures and preparing for his next trip to India, leaving September 30, 2013. A group of anonymous donors have made this possible…. no words. No words can describe how grateful and hopeful we feel.

Below are some of the pictures he has taken recently, a new form of therapy and healing for him.

Art Photos and Mayras bday santa rosa 280

Art Photos and Mayras bday santa rosa 144

13 and Castle Rock SP 247

Nothing like a hospital stay

In Medical on October 3, 2013 at 6:59 am

Started June, 2013 ~ interrupted and resumed August 2013, interrupted and finished September 2013~ and so goes our lives.

JUNE

Nothing like a hospital stay to start writing again. Hours of captive attendance. Quiet required. Stationery. The beeps and clicks of monitors and pumps… The long sought sound of restful breathing finally added to the chorus. Dannie appears to be finally sleeping- head dropped, ice packs surrounding her neck and jaw, head phones, eye mask… and her brow un-furrowed for the first time in days.

The wisdom tooth extraction went very smoothly on May 31, 2013. Like many people with long term undiagnosed chronic disabling illness, people who have suffered from daily internal assaults, and a medical world that initially one thinks can help, then sometimes harms and often just doesn’t know what to do, and the lost after loss of elements of what makes life worth living… Dannie is now suffering from PTSD related to the pain of her illness, the unavoidable and compounding loss, and the medical treatment and intervention. Once with steel nerves, she could face just about anything with eyes open, grounded resolve that she could win over any potential intrusion and interference to her day… while that spirit is still here, her tank has been emptied too many times. Too many things gone wrong… too many promising trials that became the source of more pain, or the pain of nothing yielded.

So her wisdom teeth – generally a teen/early twenties no big deal thing — were seen to be sitting on the nerves, and whose extraction presented her with the anticipated loss of feeling in her lip and cheek (eating, smiling, kissing with no feeling).  She did not waver in her decision to get this over with despite the potential outcome. She heeded encouragement and direction from one of her treatment providers that this would be an important step in her healing, despite her fear. He wanted her to complete this surgery, before resuming other treatment. She pushed through four painful and trauma triggering appointments, and faced checking into the hospital, general anesthesia, and surgery… dealing with dozens of new providers; three hospital teams: pain, surgery, medicine; countless nurses and all the relationship challenges–the negotiating, the advocating, the communicating, over stimulating and exasperating environment. Lights, hospital food, noise, disruptions, poking, squeezing, intrusion, exposure… it is simply exhausting upon exhausting for a Lyme patient whose sensory perception is heightened aggravated and hurts, when touch sends painful sensations reverberating, when day is night and  night is day, or there is no night (sleep) at all. Struggling to smile to establish positive relationships with doctors, nurses, assistants, lab techs….when every cell in her body is saying, “QUIET!!! No noise, no touch, no light…”

She now is resting post surgery, with no loss of feeling in her cheek or lip. Thanks and rejoicing!

That said, a pain crisis throughout her entire body was triggered, landing her in the ICU where we now reside. Too many days like this for anyone, yet one so young. More time in hospitals than any other place than home. More contact with doctors, technicians, phlebotomists, nurses, physical therapists and on and on… than peers. Peers are an endangered species in her life. Where are the healthy friends that long ago claimed their loyalty and love?  They are rightfully living the life of the early 20’s …. Adventures, exploration, figuring it out.

I can’t go there right now. Neither can she or Ari.

So here we are. Knowing this all too well, yet not knowing what this specific chapter will present.

Four days later: They wanted to move Dannie to another floor, out of ICU, to take her off IV medications and switch her to oral pain meds for a few days. She insisted on going home. She told them she knew the drill and that being in the hospital was not healthy for her… that she could face the transition at home better than in the hospital environment. Despite their unfamiliarity with this kind of discharge, she had an amazing nurse practitioner that HEARD HER and we left directly from the ICU to home… several prescriptions in hand… and praying for a cessation of pain that was not accomplished in the hospital.

Dannie at UCSF after surgery

So brave. None of this is okay. Yet the 13 years of medical trauma, combined with the internal beating her body gives her daily has become too too much. TOO much. I see the toll it is taking. For the last year, I see her changing. I see it. I see it. Shift focus…. I see her persistence, her resilience, her fierce grasp to taking hold of her life, over and over again. Grabbing it back from pain, wrestling it from nausea, finding her voice and claiming it with

The days that elapsed in the weeks to follow were filled with Dannie diligently getting off the pain medication and recuperating slowly. Thankful for the successful surgery, yet very saddened and concerned about the trauma it caused in her body and spirit. She is not bouncing back. She got rid of 5 of the six pain medications. Said NO to them. Her hope is waning, her sadness, frustration mounting. Fighting and relinquishing at the same time. She can’t talk about it anymore. Shut down. White knuckling it.

The plan is for her to get better enough to head back to Witchita for more treatment, which was so amazingly effective, so quickly, making more progress than in years… making her body a better environment for the continued development of the stem cells. She wants to get back there… continue to progress… Lyme rebels after any trauma to the body… surgery qualifies.

We planned her trip for June 23rd to travel, and resume treatment June 25th.  This was to be enough healing time.

Reservations made, caregiver hired…

But her body is not cooperating. She keeps trying to get up each day to pack, to get ready. Each effort thwarted. She insists that no one pack for her… she wants to do it herself. Each night she makes a list for the next day. Each day the list is carried over. I see both her disappointment and fear, right alongside her stubborn persistence.

The 23rd comes, trial upon trial to get up. If she can’t get up, how can she fly? And change planes, and travel to the hotel, and get settled, and start the five day a week routine of treatment 4-6 hours a day? The noise, the light, the movement, the pain of the stimulation on every level. Pain at an 8 baseline.

Flight changed to the 24th.  Then the 30th. She packed over those days. On the 27th we moved her to a hotel next to the airport. One step closer for rest and launching. Her bedroom at home where she laid for 11 years feels like a jail cell… we brainstormed how to increase the likelihood that she would make the flight on the 30th and this seemed a good plan… no triggers, just quiet. She was able to be up a bit, and out of bed.

And, at 4:05 p.m. June 30th, she was off!

<span>%d</span> bloggers like this: