arianddannie

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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

Monday…Again

In Uncategorized on February 14, 2012 at 8:09 am

Hello Everybody

It’s hard to believe that this is my sixth Monday in New Delhi! My feelings of time are different here; it feels like it’s been both long and short at the same time. I am now well on my way to complete healing!

I am feeling a bit tired today, but my sleep is starting to recover after an off-week of waking up several times per night. When I spoke to the doctor about this, she believed that it may be part of the “Retracing” process which the stem-cells tend to trigger for Lyme Disease patients. In this retracing, patients often experience a series of symptoms that previously occurred during the course of the illness, which may or may not have been present recently for the patient. I believe that during my stay here, I have experienced a handful of possible retracing symptoms.

Otherwise, my schedule at the clinic keeps me feeling busy.

I continue each day to thank God for all the blessings and stem-cells I experience/receive on a daily basis, and pray that my sister is able to make the journey here soon despite the recent decline in her health.

Thanks everyone for your encouraging and loving comments, support, and prayers! I wouldn’t be here if not for grace of God many great people! And for this I am extremely grateful!

Best,

Ari

pictures

In Uncategorized on February 13, 2012 at 11:10 pm

Clint and I

Bonsai!


Some more pictures

In Uncategorized on February 8, 2012 at 7:51 pm

puppies from down the road

Feeding the puppies!

wiring

Time for an update!

In Uncategorized on February 8, 2012 at 2:51 pm

Hello Again!

It is Wednesday just before noon as I write this, laying down, having just had my third caudal stem-cell injection/procedure.  As with each procedure and every stem-cell dose, I am filled with gratitude and excitement for the fact that I am here, on the other side of the world getting this amazing treatment, and also for what this will mean for the rest of my life as I become able to function more, take on adult responsibilities, and live life!

At the direction of Dr. Geeta, I have joined a local gym with the intention of working with some weights in order that I “change my body type” and develop muscle.  While I feel a bit out of place in the weight section of the gym, I am eager to comply with every aspect of my treatment plan, and to do all in my power to make this trip the most effective.  With a busy morning schedule and given that my longest break before evening is between noon and 2pm (physio is at 11am and 2pm) and coincides with lunch (usually arrives around 1pm), I plan to make time for the gym in the evenings – maybe every other day or so.

I will upload some pictures later in the day.

Best,

Ari

Monday Night Update

In Uncategorized on January 30, 2012 at 10:16 pm

Hello again!

Its been a while so wanted to make sure to write before bed today.

I had a pretty active Monday today. My day started with breakfast and stem-cells shortly thereafter, after which I usually shower and get ready for physio-therapy at 11am. Then lunch, more physio at 2pm, followed by more stem-cells between 3:30 and 4:30. Feeling more energy mixed with a determined interest in going to yoga (I had missed several yoga sessions due to my cold), I attended the hour long session starting at 5:30.  I found it very tiring and had to do it a bit slower than the pace of the instruction, but hope to have a bit more stamina next time.

Today I also received a larger dose of stems-cell in the afternoon: a 5ml IV injection of cells in addition to the regular IM injection in my arm. I guess the dose is significant enough that they gave me two medications with the stem-cells to avoid shudders and such that some patients get afterwards.  The administration of the larger dose went well, and I am now getting ready for bed knowing that there are millions of young stem-cells making their way through my body, praise God!

I’ve taken a lot of pictures and will upload some soon when I have patience/energy to post them (the Internet here moves at a glacial pace).

Tomorrow I hope to go to the neighborhood market to feed the local puppies and buy some basics such as facial tissue for my continuing congestion.

Sending my best wishes and gratitude,

Ari

Procedure Today

In Uncategorized on January 25, 2012 at 1:16 pm

Hello Everyone,

Just a quick post to let you know that in about an hour I will be going in for my second Caudal Procedure, during which the doctor gives an injection of stem-cells into my lumbar area. After the procedure, I must lie in bed for an hour before resuming the rest of my day. I am excited for it because it facilitates a higher dose of stem-cells than my “regular” twice daily doses, but also itsnt particularly painful as the two day catheter version.

Thats it for now.

-Ari : )

Be it the improvement of my cold or the stem-cells, I am feeling much more energy today than in the last week or so.

Saturday – January 21, 2012

In Uncategorized on January 21, 2012 at 9:14 pm


More physiotherapy, which I now have 11 times per week

Wedding procession

Wedding procession with groom on horse

Mall security with rifle


Man squatting by a busy intersection

Wednesday January 18, 2012

In Uncategorized on January 21, 2012 at 7:42 pm

Wednesday Jan 18 – First Epidural Catheter Procedure

In Uncategorized on January 18, 2012 at 7:39 pm

Dear All;
Feeling a bit tired and under the weather today and yesterday (sore throat), but so very happy and grateful to God that I have been given the great privilege/blessing of Nutech Mediworld’s stem-cell treatments.

Today I had my first epidural catheter “installed” into the lower mid-section of my back. The procedure was at 11 am and went smoothly. I have an external catheter/thing tapped to my lower back, and a line that is used for larger stem-cell injections – of which I have had three today! The hassle is that I must remain in my own room for all day and all of tomorrow, and must spend most of my time lying flat on my back or with my bed inclined.

Other news is that I was moved to a new (and better) room this past Monday – number 203. I now have a view of the street and some trees rather than the old building next door. I am thrilled to have two large windows that make this new room very bright during the day. Additionally, Sheila will be headed back to Santa Rosa tomorrow morning at 6:45 am for the 23 hour journey. I will miss her very, very much. Having Sheila’s help, support, wisdom, faith, and positive spirit through the first leg of my first journey to India has been invaluable. I am sad to see her return, but am also excited to get to know Claudia, who arrived today and will be my caretaker for the remainder of this trip.

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