day one of the three day procedure

I'm back at the Green Park hospital for a bit so I could pick up some necessities that I forgot to bring (namely, toothbrush and toothpaste) and to report that everything is going quite well for Ryan in day one of the three day procedure.

She's not feeling any pain at all, and no headache, which is great. In this procedure, Dr. Ashish (the anesthesiologist) put a catheter in her cerebral spinal fluid (just outside her spinal cord) at L4, and then twice a day they inject a stem cell/saline mixture into this catheter.

The catheter then runs from her lower back up her spine (safely secured with tape, see photo) to a little clip thing that is taped to Ryan's shoulder. It's very interesting. Her first injection into this site occurred this morning when Dr. Ashish gave her the catheter and she was crouched on her side in the fetal position. Tonight, he just came into our room at the other hospital and injected the stem cells into the clip on her shoulder while she was lying on her back.

The worst part about this is that she has to lay flat and inverted for a few hours after each injection, I'm assuming to assure that the stem cells have lots of space to do their thing. Lying inverted for that long means that much of the blood rushes to her head, so they make her get up very carefully after each "rest" - lying on her side for a while, then sitting up, and finally getting into her chair.

Today she had to lay flat for something like five hours and they were also giving her an IV with an antibiotic, and we all thought she wasn't going to make it not being able to pee for so long, but she did. And once she got up, oh did she pee!

I have to either come back to the Green Park hospital or find a coffee shop with wireless every day for work, so I'll be sure to post another update with more photos tomorrow.

PS - all of those weird looking things on Ryan's back are just lines from her hospital gown - this was taken about a minute after she got up from lying on her back for five hours. It looks much less scary in person, I promise!

"we can help"

It's been an eventful morning here at the hospital and my brain sort of feels like it's swimming with thoughts and emotions.

Dr. Shroff and Dr. Ashish (the anesthesiologist who does the more complicated spinal cord procedures) came down to Ryan's physio this morning and Dr. Shroff was talking with Ryan about her frustration with not being able to decipher which of her leg movements are real/new/notable and which aren't. Dr. Shroff is so straightforward and direct, and she said something like, " you really want it, but you're afraid, so you're not letting yourself believe it. You have to get over that fear and stop being so cynical. Things are happening. "

It's probably true on so many levels. Ryan is so good at anticipating disappointment that she is able to redirect her emotions to not expect anything. This is great in that she's excellent at protecting herself from disappointment and hurt, but it would probably be really good for her to be vulnerable and open, particularly for this experience. I suppose after a certain amount of time, vulnerability is pretty freaking scary, and being skeptical and protecting yourself is probably the safest way to live - I say that from personal experience! (but I promise, I'm working on being open-hearted and opening up to my vulnerability and the idea that I can't control everything in my world. I'll try to teach Ry how to do that as well!)

So that was interesting. Dr. Shroff even taped some of Ryan's leg movements coming from her crazy hips, and showed her on the video camera that SOMETHING is happening that wasn't before. I think she knows this - her feet look better, her skin looks much healthier, her hips are moving all over the place - but it's just so difficult to really lean into it.

After physio, we went to a meeting with the doctors and all of the patients. There are two patients here that are back for their second visit - a spinal cord injury and a Lyme disease patient - and another incomplete spinal cord injury that has been here for three months and is about to go home, and the rest of us have all arrived within the last couple of weeks. So this meeting was mostly for us, to be able to talk to the doctors and ask questions about the treatment and the process in general.

Lots of crazy ideas and bits of information are now floating through my head, bumping into the many varied emotions I feel about these things. Some of the tidbits are as follows:

• one patient said that stem cells, in five years, will be used as widely as penicillin
  
• there's a potential in the future for stem cells to treat pretty much any ailment - physical (muscular), neurological, developmental, psychiatric, etc... Dr. Shroff and Dr. Ashish have sucessfully treated patients with everything from Alzheimer's to Asperger's - from spinal cord injuries to cerebral palsy. Of the patients here right now, there are a few spinal cord injuries, two people suffering from Lyme disease, one with a rare muscular disorder that has led him to lose most of his muscle mass in his limbs, a man with Alzheimer's (from Bahrain!), someone with diabetic retinopathy (I didn't know what that was, but thank god for wikipedia: http://en.wikipedia.org/wiki/Diabetic_retinopathy) and a man with ALS.
• stem cells have cosmetic benefits - one of the spinal cord patients has had his gray hair turn dark again, and perhaps in the future it will be used for cosmetic procedures as well - like the next botox?
• human embryonic stem cells are legal in India only for ailments that are incurable and terminal. That means I can't get stem cells to go to my brain to cure my neuroses, unfortunately :(
• stem cells have homing devices to go directly to the places that are needed - and nobody knows how
• it was really apparent to me how early the research of all of this is - Ryan really is involved in the infancy of such a huge and amazing thing. I of course knew that before we came, but hearing the doctors talk about the possible future of human embryonic stem cells is just remarkable.
• Dr. Shroff is the only doctor in India working with human embryonic stem cells. There are other doctors working with other types of stem cells, but she's the only one working with human embryonic ones.
  
• this is huge!
  

So, there are a just a small assortment of what's going through my head right now, along with the subsequent emotions and feelings of being totally overwhelmed with information and ideas.

But don't worry, not all of the emotions I'm feeling are necessarily scary and undesirable. Some of the emotions are also inspiration and pride and awe and appreciation. So it's all good.

more later... just my immediate thoughts as we wait for lunch.

where's the party tonight? on the dance floor...

today we spent the day at the gautam nagar hospital, dr. shroff's other medical facility nearby, where she mostly treats indian patients and her fertility patients.

there was this beautiful little baby in the lobby when we arrived this morning, she was the most adorable thing i'd ever seen. she was probably about 3 months old, super tiny, and she was dressed up like a little woman - she had a bracelet on and, like a hairdo (i think that was natural). i was really tempted to steal her for ryan. she needs an indian baby.

the procedure today was injecting a larger quantity of stem cells directly into her spinal cord. because the spine is a pretty important and complicated organ of the body, this is the most risky place to inject the stem cells (but also, obviously, the best.) for this reason, the procedure had to be done in an official operating room (the "operating theatre" as the signs said) with doctors and nurses and scrubs and the whole deal.

after the procedure, which took about half an hour, ryan returned to the room and had to lay (lie? i'm losing my english!) inverted (with bricks under the foot-end of the bed) for 6 hours straight. which sucks. i was lucky enough to go to the gym for a few hours, but poor erin had to sit there, and even poorer ryan had to lay there, upside down, for 6 crazy hours. without a pillow under her head. yuck.

and the crazier thing is that this was the shortest procedure of them all. there is also a 24-hour procedure and a 3 day one. good lord. looking forward to those....

how much of this is mental?

When we first met Dr. Ashish, the doctor second in command to Dr. Shroff, he said something to us about how something like 20% of these stem cells working is all mental. He talked about how a big part of this would be yoga, and meditation, and really willing the stem cells to work.

Dr. Shroff even suggested we paint Ryan's toenails blue or orange, because the stem cells like that. We're still on a mission to find toe nail polish in Delhi - I'll paint mine too, just in case it helps.

Part of the mystery of these stem cells, and why Ryan is getting injections into all parts of her body (not just her spinal cord, which is a much more intense procedure that she'll have done for the first time sometime this week) is that they are able to move through her body and go directly to the places that they are needed most. For Ryan, this is her spinal cord, where her injury was, and parts of her legs, where she has various scars and skin grafts. Possibly her brain, too. Just kidding.

With that said, I'm not sure how much of the success of this experience will actually be scientifically based. They don't even really know how it works! But it's obvious that the most important thing that Ryan needs to receive some benefit from the stem cells is a positive outlook and some strong determination. All of that certainly can't hurt from the rest of us, either!

Last night, I decided that the stem cells needed some welcoming into Ryan's body. She's had six shots now, so she has a few thousand stem cells swimming through her bloodstream and lymph system as we speak. We put some temporary tattoos on her legs and feet that were encouraging for the stem cells. I think that the stem cells will like this contribution just as much as blue or orange toe nails - at least until we find some nail polish in the markets!

today's the day.

Ryan got her first dose of stem cells today (thousands of them, the sisters said) in her hand and i got really emotional. I'm not entirely sure why - it was just like all of this - years of wondering if stem cell research could be useful for injuries like hers, months of supporting Ryan in making her decision to pursue this treatment, subsequent months of anticipating this trip and freaking out about it, a week of hanging around Delhi and pretending to be on vacation - all of it came down to this first injection.

Here we go.....