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Week 1: March 1 - 8
DAY 1 - March 1, 2008 / Saturday
Kasie finally arrives in India. This is a very exciting time for her.
The trip was long. We left the Glenwood Springs, Colorado area about 7am MST on Friday morning, February 29, 2008 and finally arrived in New Delhi, India on Saturday March 1, 2008 at ~9pm local time (INT) and finally got settled into her room at Nu Tech Mediworld about 11:30pm (INT) which would be about 11:00am MST March 1...we're 12 1/2 hours ahead here.
We arrived at Nu Tech Mediworld, met one of the doctors and filled out some admission forms, unpacked and hit the hay around 1am local time...we were exhausted!
DAY 2 - March 2, 2008 / Sunday
We awoke around 5am local time...couldn't sleep anymore...jet lag for sure. We had a visit with another one of the doctors and filled out some more paperwork. We found out Kasie's treatment wouldn't actually start until tomorrow (Monday) after she is seen by Dr. Geeta Shroff. Dr. Shroff will determine the actual regime for her treatment.
Then this morning and afternoon we actually explored a little around the area near where we're staying and got away from the hustle and bustle of the city at Hauz Khas. It was initially built in the the 1200's BC as a great water storage reservoir (hauz) for Delhi. Later there was an adjacent university and tombs constructed. Today it is a park like setting, with fountains and at this time of year water is still in the reservoir. There were peacocks roaming about and a Deer Park. Seems to be a favorite place to relax on a Sunday afternoon for the locals, kids and adults alike.
DAY 3 - March 3, 2008 / Monday
Today we slept in, until about 720am local time, but that's probably because we were up half the night unable to sleep. We're still both suffering a little from the time change.
Anyway, this morning Kasie had her initial evaluation with Dr. Geeta Shroff and her physio (PT) Shivani Bhall. Dr. Shroff was happy with Kasie's condition as of now. Dr. Shroff said she has great hip flexor strength which enables her to stand and have some success walking with the aid of a walker and leg braces. Dr. Shroff is confident that this stem cell treatment will help Kasie improve her physical state. Alot of the treatment will be up to Kasie and what she believes the treatment can do for her (and BELIEVE she does!), as well as the actual twice daily injections and physical therapy.
While Dr. Shroff makes no guarantees, she has seen so many successes, in fact of the 450 +patients they have had at the clinic every single one of them has had some sort of success, with no ill-effects at all. That is amazing and exciting!
After her initial evaluation Kasie also met with Dr. Ashish Verma who will also be handling her case and her injections, as well as Dr. Nylan, who is not only part of the staff, but also a paraplegic patient here.
Kasie was also measured for a custom set of calipers (leg braces) to assist in locking her knees out to help her with her walking exercises.
After a full morning Kasie had to go for a battery of additional tests including blood tests, ultrasounds and ECG to verify she had no other health issues for the staff at Nu Tech Mediworld to be concerned about. The clinic FOCUS, which is located just down the street is an adventure to get to for sure. Facing mostly head on traffic, with the ever so often wrong way driver coming up behind us, to just get to the "cross walk" because there is no side walk. We've gotten pretty good at determining when we can "shoot the gap" to get us across the busy streets. Once there - well it was
A LOT of waiting - for everything. We were there for a little over 3 hours and the bulk of that was waiting while they tried to figure out what ever it was they needed to figure out. It's not really a handicap accessible facility. And the staff there...well let's just say that they really didn't understand that Kasie couldn't get up and walk into the bathroom to give a urine sample. And guess what, her chair couldn't fit through the door...another thing to "figure" out. Eghads!
DAY 4 - March 4, 2008 / Tuesday
This morning Kasie had her first full session of PT, followed by some ultrasound to help with her sore back (a result of the hard hospital bed, we're working on getting something different).
And then finally - she received her first stem cell injection! It was actually a small "test" injection, intramuscularly to her right arm, not the full dose. This is to ensure there is no adverse reaction to the stem cells themselves. But looks like she's on her way!
No immediate adverse or allergic reaction to the first injection, so tomorrow she will begin getting the full dose, twice daily.
This afternoon more therapy.
The staff provided Kasie with an air mattress this afternoon to go on top of that EXTREMELY hard (can you say plywood) foam hospital bed. Hopefully the air mattress will do the trick.
Raj, the accountant informed us today that he was unable to deposit Kasie's check because NTAF had sent it in Kasie's name. He returned the check to us and Kasie and I went on a mission to find the bank and try to have it endorsed directly. Unfortunately the directions we were given, well not so good to say the least...and the street signs...well we ended up going in the opposite direction for a couple miles. Had some good tea at the Lotus Mall though while we regrouped and learned about Indian silk rugs made in Kashmir. Anyway, by the time we got back to Nu Tech it was too late to try and get to the bank. So we'll try tomorrow. Sent NTAF an update on what was up with the check. If it's not one thing it's another...
Kasie hit the hay tonite about 1030pm and so far so good, she actually seems to be sleeping tonight.
DAY 5 - March 5, 2008 / Wednesday
Yeah - the air mattress seems to have helped - Kasie pretty much slept through the night for the 1st time since we've been here. Have we really only been here 5 days...it feels so much longer already; everyday is just one big blurr as we are still operating a little bit on time here and time back home.
Anyway, Kasie began her morning with PT, primarily concentrating on flexibility and stretching...her legs were a little spasmatic this morning. She reported a slight sensation in her right quad when Shivani was flexing it. Kasie admints she's not sure if she was imagining it because she was watching the flex and stretch or perhaps the small amount of cells she received yesterday are already working their magic (wouldn't that be grand =). It is likely at this point in time, according to the PT and Dr. Shroff, it is either a true sensation that Kasie has not previously noted or she was projecting the sensation. But it is a good sign that Kasie is becoming more aware that she needs to start keeping track of all the things she notices going on in her body, no matter how small.
After PT she had some more ultrasound on her back as she's still suffering a little from the pre-air mattress sleeping conditions.
Kasie then received the first actual stem cell therapy injection this morning. Yesterday was the "test" shot...today was the larger dose containing more stem cells. We're still trying to figure out how many stem cells are going to be in each injections. The cells come frozen in a syringe. The nurse - called a "sister" (NOT a religious affiliation) warms up the syringe containing the stem cells by rolling it in her palms and then injects the stem cells into Kasie. This mornings shot was intramuscular into Kasie's left arm. The premise is that the stems cells, because they are embryonic in nature and can take on ANY needed cell regeneration in the body, will travel to areas in the body that need regeneration. Throughout her treatment the injection sites will be varied.
After treatment this morning we were on a mission; we needed to get to the ICIC bank, which is Nu Tech's bank. We needed to try and endorse the check from NTAF over to Nu Tech directly in order to actually pay for Kasie's treatment. We figured if we were present they'd be able to do it. In order not to duplicate yesterdays wild goose chase around town; today we got better directions, or so we thought. We found the bank on our second try (not bad) with the help of the folks at the Central Bank for India where we initially ended up. Anyway, upon arriving at the ICIC bank, I asked for assistance in help getting Kasie into the building, since it was a flight of 8 or so steep steps. At first they told us no, that we weren't allowed in - WHAT !*$&, absurd. The GUARDS - armed with elephant sized shotguns, seriously, (ah I guess it is India and we might have the random wild elephant come stampeding through New Delhi at any moment) were not happy with us when I told them we had business in the bank. They rounded up a few guys who then carried Kasie up the steps. Once in side we spoke with a few people who shuffled us around finally getting us to a woman manager we presume who was not very friendly at all...in fact she was quite rude when we asked about endorsing the check. Another person came over, who actually seemed almost willing to do the endorsement, but she kept telling him and us no, it couldn't be done, that we needed to have a wire transfer. As I already new from corresponding with NTAF last night, that wasn't an option, I said that was not possible. We asked about just opening an account or putting the funds from the check into Kasie's account via her ATM card - a big fat, resounding NO! So back to Nu Tech we went. While Kasie was sitting in the lobby speaking with another patient and his family, I went and spoke with the accountant and advised him that NTAF would, according to my emails last night with the Chief Financial officer Susan Murray, cut a new check, made out directly to Nu Tech and Fedex it here. He said that would be fine. Did I have to have a little "fun" and tell Kasie they were sending us home, of course I did....for all of about 2 seconds. Like she believed me. Anyway, seems all is good again.
Kasie sending me off with Will's mother in-law tomorrow so she doesn't have to go to the Taj Mahal herself, but can experience it before she leaves on Saturday. Okay. Will is another patient undergoing treatment here.
Back up to the room for lunch...and Kasie appears to have gotten herself a lamb-burger...she is now completely freaking herself out. Not a fan of mutton! We're ordering in tonight and trying something different than the hospital food, um can you say - Pizza Hut, apparently they deliver...and for me, some local Indian fare.
More PT this afternoon. Shivani actually worked Kasie pretty good this afternoon..."pummeling" her with the exercise ball and a throwing - balance exercise. Then onto the floor for some crawling exercises, forward and backwards....not the right pants to wear...the knees kept pulling the pants down and getting tangled up, but despite her techinical difficulties Kasie did a good job.
After PT, another round of stem cells; right arm intramuscular and back up to the room to do a urine sample.
Dr. Shroff stopped by and said she wanted another Doctor to check on Kasie, as her clotting timing was not what she hoped, but not terribly bad. Geeta, then said she wants to do a procedure on Kasie at the other hospital tomorrow that is a full day of stem therapy because she wants her to regain her bladder and bowel control as soon as possible. primarily because she is such a young woman, and the sooner the better. So, I won't be going to the Taj Mahal tomorrow...and that's okay Kasie and I had already been planning on going in 3 weeks, for our birthdays, and the full moon.
The afternoon appeared to be free. We dropped off our dinner orders to the reception area, as they would call it in and asked for delivery at 7pm. When at the reception area we saw Dr. Nelan, who asked Kasie about any anti-coagulants she might be on. She is on none. He then wrote her a script to go back to FOCUS and have an ultrasound of her legs done because of concerns about deep vein thrombosis (DVT). Asha was able to schedule her with FOCUS for 4pm today, instead of tomorrow which would have caused a scheduling conflict with the stem cell procedure at the other hospital. So we had about an hour to kill...and had a brief Hindi /Sanskrit language lesson on the word "BELIEVE" which is "VISHWOUS" in Hindi...and Sanskrit -well that'll take some doing. Anyway, time to shoot the gap and back to the ever fun and excting, not, FOCUS clinic. We were there for an hour and a half to get the ultrasound on Kasie's legs, I was finally feeling the effects of not sleeping at all last night and in the darkened room waiting for Kasie's ultrasound I was so close to falling completely asleep. But no...she's done and back the clinic we went.
Staff then came by to fix our radio....we hadn't even been using the stereo (laptops and ipod) or reported a probem with it, hmm. After they left the TV and refrigerator no longer worked. Had to have them come back to adjust connections...and finagle with something on the back of the fridge.
At about 640pm we found out that my dinner wasn't enough $ to have delivered, so added some Naan (bread) to the order to get the price up to a whopping 300 Rps which is about $7.50 USD...then about 10 minutes later we were told that my dinner wouldn't be delivered until 8pm...heck I was already asleep as I hadn't slept at all last night...so we cancelled my order and I thought I'd just sleep. Kasie's was great...she took care of me tonight and made me some tomato soup that we got yesterday. Her pizza was apparently already downstairs at reception. Anyway, she went to bed about 11:30pm...and now of course, it's just about 2am...and I'm still up...aaaugh!
Just got an e-mail from NTAF...new check on it's way.
Day 6 - March 6, 2008 / THURSDAY
Well another day in India.
Kasie was up about 7am this morning and headed into the bathroom to get ready...shower, etc. She also had to provide a urine sample for the 'sisters' . As I'm sure those of you know Kasie can figure - she is super independent and can take care of herself in regards to all that...but it does take some time. Anyway, the sisters started knocking on the door at about 7:30am and for the next hour they stopped by no less than 4 more times looking for the sample, plus they also stopped by to check her blood pressure and one of the doctors also came by to see how she was doing. All the while I let them know, each time in fact, that she was in the bathroom and we would let them know when she was ready. Kasie could hear all this going on outside.
Anyway, this has become a source of amusement and perhaps a little tension for us. When we're in the room there is no peace...even when Kasie is resting or sleeping, someone is constantly coming and going and often duplicating their efforts. BP checks, clean the room, get the laundry, fix the radio - heck we didn't know it wasn't working and didn't even care (we've got laptops and ipod). When they "fixed" the radio, they disconnected the TV and we couldn't get the cable connections back correctly to make that work, so WE had to then ask them to come back to fix that, then after they fixed that the fridge no longer worked, so then they had to come back AGAIN and fix that (that was all yesterday - Wednesday). Today when we got back from the other hospital, the fridge was again not working so we had to get them up to the room...they had to check it out, couldn't fix it and then they brought us a new one. Oh and we only have one trash can - in the bathroom; so Kasie asked for one for the room too...we were told no, that we'd have to go buy one if we wanted a second one. Crazy.
I digress...so finally when Kasie was done getting ready the sisters came back to check her BP...and to collect the urine sample.
Then it was off to PT. Kasie complained of feeling a little fatigued actually...first day she didn't feel like she could more her right leg as well. Probably just all the PT catching up with her. Staff not concerned about this at this point in time. Her core strength and stability seemed much improved today.
After PT, back up to the room to get our stuff and have her BP checked again. Sisters told us that we had to go down to reception for the taxi to take us to the other hospital because today was the day Kasie was going to have her first 'procedure.' Can you say excited?!
Downstairs to reception we went. And we waited and waited...we saw Dr. Shroff and Dr. Ashish both arrive...hey wait, what are they doing here, if we're going there? Finally about 11:15am the car arrived to take us to the other hospital. Kasie got into the back seat...and the driver and an attendant couldn't understand that her chair is not collapsible. Hello! They kept trying to remove her seat...despite us trying to show them how it needed to be handled. We finally removed the wheels and then they had to put the chair in the back seat with her...because of course there was no trunk or luggage rack. The driver couldn't quiet get that the chair couldn't SIT on her, but finally we got it propped away from her instead of on her. As for me I got to experience the front seat - OHMIGOD! We thought being on the street and contending with the traffic as pedestrians was scary...this was nothing short of Mr. Toad's Wild ride! The driver was a speed demon. demolition driver, and I believe forgot that 6 feet of vehicle can't fit between 2 other vehicles that only have a 2 foot space between them. Neither Kasie or I have EVER experienced a drive like this before....we should have taped it...all you kept hearing from both of us was, OMG, OMG, OMG...he came so close to hitting other vehicles next to us, in front of us, and heck probably behind us...and then the pedestrians...maybe this is the place they really do give out points for hitting one. Kasie could reach out her window and touch them...as well as the folks in the rickshaws...UNBELIEVABLE. And she wanted me to rent a car to drive us around....NO WAY!
Well we finally stopped - and in one piece no less; we couldn't believe where we were. What hospital? Had we been kidnapped by this psycho taxi driver? Nope, we had indeed arrived. This facility was the original facility and is the hospital and in-vitro clinic; wow!
So in we went...more paperwork to fill out; and then upstairs to the room. Glad this isn't where she's staying for the duration. So then the sisters checked her BP and oxygen saturation levels...all good, gave her a gown and said they'd let her know about 15 minutes before they would take her to the Operating Theater so she could get changed and use the bathroom. Um, just before 2pm, after waiting for more than 2 hours, for the procedure that was supposed to take place at about 12pm, I checked what was up...they said they had just taken in another patient and would let us know. Well then like 5 minutes later one of the sisters in OR garb/scrubs and mask came in to tell Kasie it was time and was going to get the gurney to take Kasie away. Well no warning, so Kasie hadn't used the bathroom yet or changed...room was cold (in India - well yes in fact/breezy chill because of the fan - otherwise too hot)...so she had kept her clothes on instead of putting on the hospital gown. Anway, since she wasn't ready they said they'd take someone else...uh no....she's ready...so while they got the gurney she GOT ready. ,Waiting anymore - not an option as far as we were concened. They rolled in the gurney, which doesn't lower and Kasie got herself up on it, about 3 1/2 feet high...and off she went...without me. One of the 'orderlies' was the guy who picked us up form the airport "Opie"...and he thought it was funny that I should think I could go. Kasie and I thought it was funny that I couldn't, what do you mean I can't be there to document this auspicous occassion. I'd gown up, not a problem. I've been in plenty operating rooms in the States...and hasn't been a big deal. But nope I couldn't go, hmph! The Kasie eyes and pout didn't work.
So off she went.
She was gone for about 40 minutes. When they brought her back up she was awake and joking with them...they lifted her off the gurney onto the hospital bed, and entertaining sight. The hospital bed, has the same hard vinyl covered foam mattress which is about 4 inches thick, oh joy. So her instructions were to lie there and pretty much not move for the next 5 hours. Oh this'll be interesting. She had to have her feet slight elevated...so the high-tech place that this is, well they jacked up her feet by placing 2 bricks under the legs of the bed. Comical.
Kasie described her trip to the OR. First off she said Dr. Ashish also said no to me coming to watch and document her procedure. Then she said the operating room was like being smack dab in the middle of a horror movie operating room - thoughts of Hannibal Lechter apparently danced through her head, poor thing. She also said that if Jack (her Papa) were here, they'd be running for the plane instead of going deeper into the midst of this treatment. They put her on a v-shaped table to expose her back for the shots, she recieved four into her spine in the region of her coccyx (tailbone). According to Kasie, only the Doctor actually wore gloves. Have I mentioned this yet...they don't wear gloves around here for any of the medical procedures including ones that expose them and the patient to bodily fluids...unbelieviable. The environmental conditions are of concern, SKETCH for sure. And it's not just here at the Nu Tech facilities, but at FOCUS, the other clinic, too.
At the Nu Tech Green Park facility I watched them change a burn dressing on another patient...well let's just say it is extremely alarming at the lack of sanitary and sterile conditons I am seeing. Heck, I'm way more concerned and conscious about such cross contaminations and transmissions even with the wildlife and livestock we handle at home than they are here. I guess I'd have to say Kasie is EXTREMELY fortunate that all such injections and blood draws, etc., that SHE has participated in, have been with needles and syringes that we have witnessed being taken from new unopened packages...otherwise, ehgads I'd REALLY be concerned.
About 4 pm Kasie had a feeling she couldn't quite describe...but said she couldn't breathe and that it was almost like a pinching feeling in her right lung or a bubble and felt a littlet claustrophobic and said she couldn't breathe...she sat up and the feeling passed. She thinks it was just the uncomfortable feeling of the position she was lying in. She was fine in a minute or so, but mentioned it to Dr. Ashish when he came in to check on her. Oh yes, then a sister came in and said she needed ANOTHER urine sample, because Green Park had forgot to send over the one from this morning, um, Kasie is not supposed to move until 7pm. After all that, aaugh!
About 7pm it was time to sit up for real, another 1/2 hour to wait just to make sure there was no dizziness or other issues. At 730pm we made our way down to the car...hoo we're out after dark...couldn't see a dang thing on the way from the hospital door to the car. This time it was a van, so you'd think her chair would fit just fine. Nope. Could it be the gas cylinder in the back of the van made obstructed the chair from fitting, yep. The new driver and attendant again tried to take off her seat to collapse the chair...I took off the wheels and they got the chair and wheels in the back. This time I got to ride in the back seat with Kasie. This driver was WAY better and we both felt better because we were actually in a larger vehicle as well. Whew!
Back at the ranch...oh I mean Green Park, that's what they call the facility we stay at. Up to the room and low and behold we weren't even in the door and the sister and doctor were her to check on her.
Talked to Jack....filled him in on today's adventures. Time for bed, we're trying the "Do Not Disturb" sign tonight
DAY 7 - March 7, 2008 / Friday
Wow, we both slept pretty much through the night. I got up about 5am...and Kasie just got up about 7am...ah she was texting a little earlier....but went back to sleep. Maybe we're both FINALLY getting used to the time. Wouldn't that be nice.
Well the sign worked until 845am...knock from one of the sisters looking for yet ANOTHER urine sample and get Kasie's BP, accompanied by of the managers looking to know if we were going to want lunch. Yes, vegetarian - Kasie too now after the lamb-burger incident. Egg sandwich? - uh no.
I asked the sister if the urine sample was going to be an everyday thing and if so give us the jar the night before...she said no, but there had been a problem with yesterday's (like they lost it?) I told her that Kasie had to do the one for her yesterday morning and then one at the other hospital because they hadn't sent the first one over...oh she didn't realize. Uhvey!
Not even a minute later she was back to find out if we had received a yellow card when we left the other hospital. No we received nothing.
Kasie's off to PT now...more later.
Good PT session. Kasie's calipers (leg braces) were ready. She stood and practiced shifting her weight. Her right leg, despite the brace was not remaining locked so they adjusted it several times but still having some issues with it. So they'll adjust it more and have it for afternoon session.
Another stem cell treatment this morning, this time it was intravenous into her left hand. Kasie complained it was pretty painful at the site itself...sister said no. Kasie said she could feel the intravenous solution...sodium chloride of 100 ml with the stem cells injected into that medium, radiated up from her hand through her wrist and into her lower forearm. This method of receiving the stem cells takes about 20 minutes and is done in the room. So while in the room we had the room cleaned by one of the staff. For some reason he really seemed to want to "wash" the walls...but we got the floors cleaned, trash dumped and the bathroom cleaned too and fresh sheets. They won't do anything or enter the room unless we are present, no kidding...they're always here!
After her treatment we were visiting with Will and his mother, Marcia about Will's treatment and Kasies...comparing notes a little... His wife Marci is at home with their two kids and dog (Kassie Bell? spelling)...they communicate daily with them via web cam. Kasie has a web cam on her laptop...we just haven't figured it out yet...heck we haven't looked at how to figure it out yet...probably pretty simple if we took a moment to check it out, eh?!
Then Trevor, a paraplegic from Australia, stopped by the room to tell us all that the group meeting was on downstairs in a few minutes. So we all went.
Occassionally, Dr. Geeta Shroff and Dr. Ashish Verma have an open forum discussion with the patients and families who want to participate. This is an opportunity for all the patients to: compare notes in the presence of the doctors; discuss each others progress; ask questions; voice concerns; discuss the protocols and procedures; etc.
Most of this discussion takes place in very general, layman terms. Scientific protocols, research, and techologies are avoided according to the doctors because of pending patents in both India and the USA, therefore they are extremely reluctant to divulge too much, if any information as it pertains to the ACTUAL background, research and development of the stem cell technology they are using.
So here are my notes:
? indicates someone in the group asked a specifc question regarding this subject
After the meeting Kasie had PT again. More work on the calipers and more standing; still having some issues with her right knee not staying locked, so they're going to try and fix it again for tomorrow.
After PT we just hung around for a bit and then went to yoga. Dr. Shroff called Kasie out of yoga to try and void her bladder on her own.
Another stem cell injection into Kasie's arm this evening...again she said it really made her sore...and she got fairly flushed, but BP okay.
Then a Friday night out on the town...sort of. Marcia lent us her car/driver, thanks...expanded our exploration opportunities outside of walking/wheeling distance. Lots of traffic getting there...8 lanes of cars crowded into 4 actual on the ground lanes...still can't get used to ALL the honking...it's insane and sound danged loud all the time. This driver was good, not anything like the psycho from the other day. We went to the Khan Market for a bit...drive about 20 minutes away. Very upscale by the standards we've seen thus far. Very bling bling even! Becky will love her....whatever it is - it IS beautiful...and I got some shoes....yes, a girl (even a game warden) can NEVER have too many shoes, especially if their pink and jeweled...and on sale no less, sweet! Perry do you think we can make a uniform exception?! We found some neat other stuff...but wow some was super pricey....and we only had a little time to shop because we had to get the car back so the driver could take Will's mother-in-law to the airport for her flight home.
Upon returning we ordered dinner in...McDonalds if you can believe it...McDELIVERY, no kidding. Seriously the little delivery guy showed up with a McDelivery hat....we need one of those! And get this, they have veggie burgers...not Boca or Garden burgers...but REAL veggie burgers...it floored me for sure, had to try it, since it was getting late, about 8pm, and we were hungry and just wanted something quick; so I actually ATE McDonalds, holy smokes! And if Kasie eats another piece of chicken I think she's going to cluck...and perhaps sprout feathers and fly home instead of walk home, so since no beef in India at Mickey D's, she had the fish filet. Oh and they DON"T do milkshakes in India - at least not at the Green Park MD's; found that out the hard way....hope we didn't scare the delivery guy too bad....and Kasie - he was 12.
So after dinner we crashed.
Day 8 - March 8, 2008 / Saturday
Well, we've been here almost a week now, time is flying by...but dragging at the same time if you know what I mean...still one big blurr.
Kasie's on her way downstairs for PT.
I did some laundry this morning, how domestic.
After PT and her injection this morning, we're planning on hiring a car to go exploring and perhaps some sightseeing because there is no afternoon PT on the weekend and she can get her evening injection when we return. The quote for the day:
'THERE IS A DIFFERENCE BETWEEN INTEREST AND COMMITMENT. WHEN YOU ARE INTERESTED IN SOMETHING YOU DO IT ONLY WHEN IT IS CONVENIENT. WHEN YOU ARE COMMITTED TO SOMETHING YOU ACCEPT NO EXCUSES AND PRODUCE ONLY RESULTS.'
Later....
So another morning session of PT with Shivani. Dr. Shroff came down to check on Kasie and her bladder and bowel functions. Kasie is having some success with control at this point and Dr. Shroff, as well as Kasie is very excited by this. Dr. Shroff also wanted to see Kasie try to walk today with the aid of the calipers. The right knee, despite the braces continues to be problematic and 'buckles'. It is not just the knee itself that is causing the problem, but the lack of muscle tone in the quadricep and hamstring....this will need to develop more and will with PT.
After PT, Kasie had another round of stem cells intravenously (IV) up in the room. Different/new sister this time. She was having extreme difficulty getting her IV line into Kasie's hand. Kasie was experiencing quite a bit of pain and was complaining to the sister, who was pretty much ignorning Kasie's complaints and concerns. Kasie said she could see the small needle actually poking through her skin, not into her vein...and asked me to look, when I stood up to look the sister pulled the needle. Instead of in the hand, I suggested they give Kasie the IV in the arm...which the sister then did and it was much easier on Kasie since the sister was able to FIND the vein!
A little bite to eat for Kasie...and then we were on our way, much later than we thought....but still at noon...we had plenty of time to explore. We hired a car and driver for the day (8 hours for $25 USD, sha - wing!) Marcia and Will joined us, and followed in their car...we can't all fit in one since these cars are so tiny and we need to fit Kasie's wheelchair.
Oh, while waiting for the car an driver; we learned today that perhaps, just perhaps the fridge problems weren't actually fridge problems, but more like Kasie and Sonia not realizing that when we took the key for the room out of the little thing-a-ma-bob that it inserts into when we leave each time, we actually are turning off the power to the fridge....uh duh! Would have been nice to know. Problem solved.
First stop: Qutab Minar complex...well that's after we sat in a traffic jam forever and didn't go anywhere. I must have been pretty long I reckon' since the driver actually turned off the car for awhile. Proably in part to the traffic lights not working, and probably all 13 million plus residents of Delhi, and then throw in the tourists for good measure decided to be in a car going the same direction we were...traffic lights out due to the power grid failing the night before. We do seem to lose power every evening now for a little bit of time. Anyway, finally at the Qutab Minar....
A vast array of buildings and ruins dating back to the onsent of Islamic rule and are examples of Afghan and Indo-Islamic architecture.
The Qutab Minar, Delhi's oldest landmark, is a towering sandstone minaret - the tallest minaret in the world in fact. Constructed as a victory tower after the defeat of the last Hindu kingdom in Delhi in 1193, its is 238 feet tall, has 399 steps, and tapers from a base of about 49 feet to just over 8 feet at the top. It is intricately carved with excerpts from the Qur'an.
Also located at the complex, in the ruins of the mosque (Muslim place of worship) is the Iron Pillar of Delhi. It is a metallurgical oddity in that it's origins are unknown and the technology used to create the rust-free iron pillar has not been determined. Um - we saw rust on it...but that could be why it's now closed and fenced off. You see, the traditional belief was that anyone who could encircle the pillar with their arms, while their back was to the pillar would have their wish granted.
Kasie was a rockstar...lots of people wanted to take THEIR picture with her. Must have been the blingy top and belt....or the pure white skin, or the wheelchair, or....it's just that it's Kasie!
Quite a few green parrots, and tons of pigeons abound.
Next stop: lunch....the Essex House, no we're not in NY. A very a nice upscale, clean restuarant...the Indian food was excellent! and inexpensive...$15 USD for the both of us. We talked about being "pregnant." Oh did I mention the "being pregnant" thing yet? Hold your horses everyone...it's NOT REALLY being pregnant. But this is the only time I know of when "just a little bit pregnant" might actually cover it. You see, each stem cell injection is in essence creating the environmental and health concerns of actually being pregnant for each of the stem cell patients. Each embryonic stem cell needs 9 months to fully develop. And each time Kasie recieves the stem cells (which is twice daily), she actually extends her 9 months. So not only for the 9 months from the 1st stem cell injection (Kasie now has set an alarm on her cell phone for when the "baby stem cells are born") but what we all seemed to have missed when discussing this over lunch - was that also for the next 9 months for each subsequent injection...including the last injection (in May) she is under doctors instructions to really take care of herself, as if she were pregnant. The better she takes care of herself, the better her chances are for continued success and reaching that ultimate goal: TO WALK AGAIN!
So while no booties or baby blankets are necessary...Kasie will need the continued support of family and friends to ensure what she is now calling her "little baby stem cells" develop properly. First "born" expected on December 4, 2008...and last born (of the May injections) sometime next February 2009.
Today, though Kasie is still full of energy and wants to exlpore some more...and she can roll and I can push...so onto our next stop...
Humayuns Tomb
Mughal architecture only surpassed perhaps at the Taj Mahal.
Humayuns tomb was built by the wife of the second Mughal Emperor Humayun, after he fell to his death in his library. This was in the 16th century. The tomb itself is actually the finally resting place of more than 100 people throughout the elaborate and sprawling layout. It is a series of quadrangle divisions and introduces the "charbagh" (four garden area).
Lots of Myna birds everywhere, a few green parrots again...and we saw several, what appeared to be eagles inflight and hunting on the grounds...no one around to ask, so I'm going to need to do some digging about what bird they actually were. They were definitely a raptor of some sort...similar in coloration and size to a golden.
Again Kasie, a celeb now in her own right had requests to have her picture taken with others. We also met a German traveler, Andrew, who told her about a German man who wrote a book about his travels to India by himself...the twist was that he too was confined to a wheelchair. Andrew will email us the name of the book and we'll see if it comes in an English version....would be an interesting read I'm sure.
And on the way back to Nu Tech, we had to pass them, so we stopped briefly at...
Lodi Gardens
Named after the Lodi Sultan dynasty consists of several tombs to various Sayyid and Lodi rulers. They are beautifully tended gardens, including the National Bonsai Tree Park (um, we missed that part, go figure). The birds though - amazing the songs eminating from the trees as we strolled/rolled our way inwards was unbelievable. And the fresh and crisp smells of the flowers...we so left behind the pungent odors of the streets of Delhi...all within a mere 20 or so feet. And it is truly amazing at all these sites...once you "enter" into these snapshots in time...you leave behind all the hustle and bustle and even the sounds of Delhi. It is so refreshing and so peaceful...wish we could get there without a car...we'd have to go everyday, that's how enchanting this place was.
And finally back to Nu Tech...before 7pm. A full day for sure...
End of week:
Our first week in Delhi India has come to a close...we've been here 7 days now and it has been a whirl wind of excitement and adventure thus far. Kasie's treatments, in a nutshell, seem to be going very well and she is seeing some progressions in her PT.
Our girl is homesick from time to time...but your e-mails, calls and texts sure help perk her up. I hope that this website is helping to keep you all informed and is answering questions you may have about what Kasie is undergoing and what it's like in India. We are going to try and get a 'local' phone tomorrow or Monday, so she can stop running up her phone bill. At $2.29/minute - for both incoming and outgoing calls...while on her domestic phone from home...yikes that sure adds up fast.
She figured out the webcam (at least our end of it)...so now we need to test it out with someone...
Kasie finally arrives in India. This is a very exciting time for her.
The trip was long. We left the Glenwood Springs, Colorado area about 7am MST on Friday morning, February 29, 2008 and finally arrived in New Delhi, India on Saturday March 1, 2008 at ~9pm local time (INT) and finally got settled into her room at Nu Tech Mediworld about 11:30pm (INT) which would be about 11:00am MST March 1...we're 12 1/2 hours ahead here.
We arrived at Nu Tech Mediworld, met one of the doctors and filled out some admission forms, unpacked and hit the hay around 1am local time...we were exhausted!
DAY 2 - March 2, 2008 / Sunday
We awoke around 5am local time...couldn't sleep anymore...jet lag for sure. We had a visit with another one of the doctors and filled out some more paperwork. We found out Kasie's treatment wouldn't actually start until tomorrow (Monday) after she is seen by Dr. Geeta Shroff. Dr. Shroff will determine the actual regime for her treatment.
Then this morning and afternoon we actually explored a little around the area near where we're staying and got away from the hustle and bustle of the city at Hauz Khas. It was initially built in the the 1200's BC as a great water storage reservoir (hauz) for Delhi. Later there was an adjacent university and tombs constructed. Today it is a park like setting, with fountains and at this time of year water is still in the reservoir. There were peacocks roaming about and a Deer Park. Seems to be a favorite place to relax on a Sunday afternoon for the locals, kids and adults alike.
DAY 3 - March 3, 2008 / Monday
Today we slept in, until about 720am local time, but that's probably because we were up half the night unable to sleep. We're still both suffering a little from the time change.
Anyway, this morning Kasie had her initial evaluation with Dr. Geeta Shroff and her physio (PT) Shivani Bhall. Dr. Shroff was happy with Kasie's condition as of now. Dr. Shroff said she has great hip flexor strength which enables her to stand and have some success walking with the aid of a walker and leg braces. Dr. Shroff is confident that this stem cell treatment will help Kasie improve her physical state. Alot of the treatment will be up to Kasie and what she believes the treatment can do for her (and BELIEVE she does!), as well as the actual twice daily injections and physical therapy.
While Dr. Shroff makes no guarantees, she has seen so many successes, in fact of the 450 +patients they have had at the clinic every single one of them has had some sort of success, with no ill-effects at all. That is amazing and exciting!
After her initial evaluation Kasie also met with Dr. Ashish Verma who will also be handling her case and her injections, as well as Dr. Nylan, who is not only part of the staff, but also a paraplegic patient here.
Kasie was also measured for a custom set of calipers (leg braces) to assist in locking her knees out to help her with her walking exercises.
After a full morning Kasie had to go for a battery of additional tests including blood tests, ultrasounds and ECG to verify she had no other health issues for the staff at Nu Tech Mediworld to be concerned about. The clinic FOCUS, which is located just down the street is an adventure to get to for sure. Facing mostly head on traffic, with the ever so often wrong way driver coming up behind us, to just get to the "cross walk" because there is no side walk. We've gotten pretty good at determining when we can "shoot the gap" to get us across the busy streets. Once there - well it was
A LOT of waiting - for everything. We were there for a little over 3 hours and the bulk of that was waiting while they tried to figure out what ever it was they needed to figure out. It's not really a handicap accessible facility. And the staff there...well let's just say that they really didn't understand that Kasie couldn't get up and walk into the bathroom to give a urine sample. And guess what, her chair couldn't fit through the door...another thing to "figure" out. Eghads!
DAY 4 - March 4, 2008 / Tuesday
This morning Kasie had her first full session of PT, followed by some ultrasound to help with her sore back (a result of the hard hospital bed, we're working on getting something different).
And then finally - she received her first stem cell injection! It was actually a small "test" injection, intramuscularly to her right arm, not the full dose. This is to ensure there is no adverse reaction to the stem cells themselves. But looks like she's on her way!
No immediate adverse or allergic reaction to the first injection, so tomorrow she will begin getting the full dose, twice daily.
This afternoon more therapy.
The staff provided Kasie with an air mattress this afternoon to go on top of that EXTREMELY hard (can you say plywood) foam hospital bed. Hopefully the air mattress will do the trick.
Raj, the accountant informed us today that he was unable to deposit Kasie's check because NTAF had sent it in Kasie's name. He returned the check to us and Kasie and I went on a mission to find the bank and try to have it endorsed directly. Unfortunately the directions we were given, well not so good to say the least...and the street signs...well we ended up going in the opposite direction for a couple miles. Had some good tea at the Lotus Mall though while we regrouped and learned about Indian silk rugs made in Kashmir. Anyway, by the time we got back to Nu Tech it was too late to try and get to the bank. So we'll try tomorrow. Sent NTAF an update on what was up with the check. If it's not one thing it's another...
Kasie hit the hay tonite about 1030pm and so far so good, she actually seems to be sleeping tonight.
DAY 5 - March 5, 2008 / Wednesday
Yeah - the air mattress seems to have helped - Kasie pretty much slept through the night for the 1st time since we've been here. Have we really only been here 5 days...it feels so much longer already; everyday is just one big blurr as we are still operating a little bit on time here and time back home.
Anyway, Kasie began her morning with PT, primarily concentrating on flexibility and stretching...her legs were a little spasmatic this morning. She reported a slight sensation in her right quad when Shivani was flexing it. Kasie admints she's not sure if she was imagining it because she was watching the flex and stretch or perhaps the small amount of cells she received yesterday are already working their magic (wouldn't that be grand =). It is likely at this point in time, according to the PT and Dr. Shroff, it is either a true sensation that Kasie has not previously noted or she was projecting the sensation. But it is a good sign that Kasie is becoming more aware that she needs to start keeping track of all the things she notices going on in her body, no matter how small.
After PT she had some more ultrasound on her back as she's still suffering a little from the pre-air mattress sleeping conditions.
Kasie then received the first actual stem cell therapy injection this morning. Yesterday was the "test" shot...today was the larger dose containing more stem cells. We're still trying to figure out how many stem cells are going to be in each injections. The cells come frozen in a syringe. The nurse - called a "sister" (NOT a religious affiliation) warms up the syringe containing the stem cells by rolling it in her palms and then injects the stem cells into Kasie. This mornings shot was intramuscular into Kasie's left arm. The premise is that the stems cells, because they are embryonic in nature and can take on ANY needed cell regeneration in the body, will travel to areas in the body that need regeneration. Throughout her treatment the injection sites will be varied.
After treatment this morning we were on a mission; we needed to get to the ICIC bank, which is Nu Tech's bank. We needed to try and endorse the check from NTAF over to Nu Tech directly in order to actually pay for Kasie's treatment. We figured if we were present they'd be able to do it. In order not to duplicate yesterdays wild goose chase around town; today we got better directions, or so we thought. We found the bank on our second try (not bad) with the help of the folks at the Central Bank for India where we initially ended up. Anyway, upon arriving at the ICIC bank, I asked for assistance in help getting Kasie into the building, since it was a flight of 8 or so steep steps. At first they told us no, that we weren't allowed in - WHAT !*$&, absurd. The GUARDS - armed with elephant sized shotguns, seriously, (ah I guess it is India and we might have the random wild elephant come stampeding through New Delhi at any moment) were not happy with us when I told them we had business in the bank. They rounded up a few guys who then carried Kasie up the steps. Once in side we spoke with a few people who shuffled us around finally getting us to a woman manager we presume who was not very friendly at all...in fact she was quite rude when we asked about endorsing the check. Another person came over, who actually seemed almost willing to do the endorsement, but she kept telling him and us no, it couldn't be done, that we needed to have a wire transfer. As I already new from corresponding with NTAF last night, that wasn't an option, I said that was not possible. We asked about just opening an account or putting the funds from the check into Kasie's account via her ATM card - a big fat, resounding NO! So back to Nu Tech we went. While Kasie was sitting in the lobby speaking with another patient and his family, I went and spoke with the accountant and advised him that NTAF would, according to my emails last night with the Chief Financial officer Susan Murray, cut a new check, made out directly to Nu Tech and Fedex it here. He said that would be fine. Did I have to have a little "fun" and tell Kasie they were sending us home, of course I did....for all of about 2 seconds. Like she believed me. Anyway, seems all is good again.
Kasie sending me off with Will's mother in-law tomorrow so she doesn't have to go to the Taj Mahal herself, but can experience it before she leaves on Saturday. Okay. Will is another patient undergoing treatment here.
Back up to the room for lunch...and Kasie appears to have gotten herself a lamb-burger...she is now completely freaking herself out. Not a fan of mutton! We're ordering in tonight and trying something different than the hospital food, um can you say - Pizza Hut, apparently they deliver...and for me, some local Indian fare.
More PT this afternoon. Shivani actually worked Kasie pretty good this afternoon..."pummeling" her with the exercise ball and a throwing - balance exercise. Then onto the floor for some crawling exercises, forward and backwards....not the right pants to wear...the knees kept pulling the pants down and getting tangled up, but despite her techinical difficulties Kasie did a good job.
After PT, another round of stem cells; right arm intramuscular and back up to the room to do a urine sample.
Dr. Shroff stopped by and said she wanted another Doctor to check on Kasie, as her clotting timing was not what she hoped, but not terribly bad. Geeta, then said she wants to do a procedure on Kasie at the other hospital tomorrow that is a full day of stem therapy because she wants her to regain her bladder and bowel control as soon as possible. primarily because she is such a young woman, and the sooner the better. So, I won't be going to the Taj Mahal tomorrow...and that's okay Kasie and I had already been planning on going in 3 weeks, for our birthdays, and the full moon.
The afternoon appeared to be free. We dropped off our dinner orders to the reception area, as they would call it in and asked for delivery at 7pm. When at the reception area we saw Dr. Nelan, who asked Kasie about any anti-coagulants she might be on. She is on none. He then wrote her a script to go back to FOCUS and have an ultrasound of her legs done because of concerns about deep vein thrombosis (DVT). Asha was able to schedule her with FOCUS for 4pm today, instead of tomorrow which would have caused a scheduling conflict with the stem cell procedure at the other hospital. So we had about an hour to kill...and had a brief Hindi /Sanskrit language lesson on the word "BELIEVE" which is "VISHWOUS" in Hindi...and Sanskrit -well that'll take some doing. Anyway, time to shoot the gap and back to the ever fun and excting, not, FOCUS clinic. We were there for an hour and a half to get the ultrasound on Kasie's legs, I was finally feeling the effects of not sleeping at all last night and in the darkened room waiting for Kasie's ultrasound I was so close to falling completely asleep. But no...she's done and back the clinic we went.
Staff then came by to fix our radio....we hadn't even been using the stereo (laptops and ipod) or reported a probem with it, hmm. After they left the TV and refrigerator no longer worked. Had to have them come back to adjust connections...and finagle with something on the back of the fridge.
At about 640pm we found out that my dinner wasn't enough $ to have delivered, so added some Naan (bread) to the order to get the price up to a whopping 300 Rps which is about $7.50 USD...then about 10 minutes later we were told that my dinner wouldn't be delivered until 8pm...heck I was already asleep as I hadn't slept at all last night...so we cancelled my order and I thought I'd just sleep. Kasie's was great...she took care of me tonight and made me some tomato soup that we got yesterday. Her pizza was apparently already downstairs at reception. Anyway, she went to bed about 11:30pm...and now of course, it's just about 2am...and I'm still up...aaaugh!
Just got an e-mail from NTAF...new check on it's way.
Day 6 - March 6, 2008 / THURSDAY
Well another day in India.
Kasie was up about 7am this morning and headed into the bathroom to get ready...shower, etc. She also had to provide a urine sample for the 'sisters' . As I'm sure those of you know Kasie can figure - she is super independent and can take care of herself in regards to all that...but it does take some time. Anyway, the sisters started knocking on the door at about 7:30am and for the next hour they stopped by no less than 4 more times looking for the sample, plus they also stopped by to check her blood pressure and one of the doctors also came by to see how she was doing. All the while I let them know, each time in fact, that she was in the bathroom and we would let them know when she was ready. Kasie could hear all this going on outside.
Anyway, this has become a source of amusement and perhaps a little tension for us. When we're in the room there is no peace...even when Kasie is resting or sleeping, someone is constantly coming and going and often duplicating their efforts. BP checks, clean the room, get the laundry, fix the radio - heck we didn't know it wasn't working and didn't even care (we've got laptops and ipod). When they "fixed" the radio, they disconnected the TV and we couldn't get the cable connections back correctly to make that work, so WE had to then ask them to come back to fix that, then after they fixed that the fridge no longer worked, so then they had to come back AGAIN and fix that (that was all yesterday - Wednesday). Today when we got back from the other hospital, the fridge was again not working so we had to get them up to the room...they had to check it out, couldn't fix it and then they brought us a new one. Oh and we only have one trash can - in the bathroom; so Kasie asked for one for the room too...we were told no, that we'd have to go buy one if we wanted a second one. Crazy.
I digress...so finally when Kasie was done getting ready the sisters came back to check her BP...and to collect the urine sample.
Then it was off to PT. Kasie complained of feeling a little fatigued actually...first day she didn't feel like she could more her right leg as well. Probably just all the PT catching up with her. Staff not concerned about this at this point in time. Her core strength and stability seemed much improved today.
After PT, back up to the room to get our stuff and have her BP checked again. Sisters told us that we had to go down to reception for the taxi to take us to the other hospital because today was the day Kasie was going to have her first 'procedure.' Can you say excited?!
Downstairs to reception we went. And we waited and waited...we saw Dr. Shroff and Dr. Ashish both arrive...hey wait, what are they doing here, if we're going there? Finally about 11:15am the car arrived to take us to the other hospital. Kasie got into the back seat...and the driver and an attendant couldn't understand that her chair is not collapsible. Hello! They kept trying to remove her seat...despite us trying to show them how it needed to be handled. We finally removed the wheels and then they had to put the chair in the back seat with her...because of course there was no trunk or luggage rack. The driver couldn't quiet get that the chair couldn't SIT on her, but finally we got it propped away from her instead of on her. As for me I got to experience the front seat - OHMIGOD! We thought being on the street and contending with the traffic as pedestrians was scary...this was nothing short of Mr. Toad's Wild ride! The driver was a speed demon. demolition driver, and I believe forgot that 6 feet of vehicle can't fit between 2 other vehicles that only have a 2 foot space between them. Neither Kasie or I have EVER experienced a drive like this before....we should have taped it...all you kept hearing from both of us was, OMG, OMG, OMG...he came so close to hitting other vehicles next to us, in front of us, and heck probably behind us...and then the pedestrians...maybe this is the place they really do give out points for hitting one. Kasie could reach out her window and touch them...as well as the folks in the rickshaws...UNBELIEVABLE. And she wanted me to rent a car to drive us around....NO WAY!
Well we finally stopped - and in one piece no less; we couldn't believe where we were. What hospital? Had we been kidnapped by this psycho taxi driver? Nope, we had indeed arrived. This facility was the original facility and is the hospital and in-vitro clinic; wow!
So in we went...more paperwork to fill out; and then upstairs to the room. Glad this isn't where she's staying for the duration. So then the sisters checked her BP and oxygen saturation levels...all good, gave her a gown and said they'd let her know about 15 minutes before they would take her to the Operating Theater so she could get changed and use the bathroom. Um, just before 2pm, after waiting for more than 2 hours, for the procedure that was supposed to take place at about 12pm, I checked what was up...they said they had just taken in another patient and would let us know. Well then like 5 minutes later one of the sisters in OR garb/scrubs and mask came in to tell Kasie it was time and was going to get the gurney to take Kasie away. Well no warning, so Kasie hadn't used the bathroom yet or changed...room was cold (in India - well yes in fact/breezy chill because of the fan - otherwise too hot)...so she had kept her clothes on instead of putting on the hospital gown. Anway, since she wasn't ready they said they'd take someone else...uh no....she's ready...so while they got the gurney she GOT ready. ,Waiting anymore - not an option as far as we were concened. They rolled in the gurney, which doesn't lower and Kasie got herself up on it, about 3 1/2 feet high...and off she went...without me. One of the 'orderlies' was the guy who picked us up form the airport "Opie"...and he thought it was funny that I should think I could go. Kasie and I thought it was funny that I couldn't, what do you mean I can't be there to document this auspicous occassion. I'd gown up, not a problem. I've been in plenty operating rooms in the States...and hasn't been a big deal. But nope I couldn't go, hmph! The Kasie eyes and pout didn't work.
So off she went.
She was gone for about 40 minutes. When they brought her back up she was awake and joking with them...they lifted her off the gurney onto the hospital bed, and entertaining sight. The hospital bed, has the same hard vinyl covered foam mattress which is about 4 inches thick, oh joy. So her instructions were to lie there and pretty much not move for the next 5 hours. Oh this'll be interesting. She had to have her feet slight elevated...so the high-tech place that this is, well they jacked up her feet by placing 2 bricks under the legs of the bed. Comical.
Kasie described her trip to the OR. First off she said Dr. Ashish also said no to me coming to watch and document her procedure. Then she said the operating room was like being smack dab in the middle of a horror movie operating room - thoughts of Hannibal Lechter apparently danced through her head, poor thing. She also said that if Jack (her Papa) were here, they'd be running for the plane instead of going deeper into the midst of this treatment. They put her on a v-shaped table to expose her back for the shots, she recieved four into her spine in the region of her coccyx (tailbone). According to Kasie, only the Doctor actually wore gloves. Have I mentioned this yet...they don't wear gloves around here for any of the medical procedures including ones that expose them and the patient to bodily fluids...unbelieviable. The environmental conditions are of concern, SKETCH for sure. And it's not just here at the Nu Tech facilities, but at FOCUS, the other clinic, too.
At the Nu Tech Green Park facility I watched them change a burn dressing on another patient...well let's just say it is extremely alarming at the lack of sanitary and sterile conditons I am seeing. Heck, I'm way more concerned and conscious about such cross contaminations and transmissions even with the wildlife and livestock we handle at home than they are here. I guess I'd have to say Kasie is EXTREMELY fortunate that all such injections and blood draws, etc., that SHE has participated in, have been with needles and syringes that we have witnessed being taken from new unopened packages...otherwise, ehgads I'd REALLY be concerned.
About 4 pm Kasie had a feeling she couldn't quite describe...but said she couldn't breathe and that it was almost like a pinching feeling in her right lung or a bubble and felt a littlet claustrophobic and said she couldn't breathe...she sat up and the feeling passed. She thinks it was just the uncomfortable feeling of the position she was lying in. She was fine in a minute or so, but mentioned it to Dr. Ashish when he came in to check on her. Oh yes, then a sister came in and said she needed ANOTHER urine sample, because Green Park had forgot to send over the one from this morning, um, Kasie is not supposed to move until 7pm. After all that, aaugh!
About 7pm it was time to sit up for real, another 1/2 hour to wait just to make sure there was no dizziness or other issues. At 730pm we made our way down to the car...hoo we're out after dark...couldn't see a dang thing on the way from the hospital door to the car. This time it was a van, so you'd think her chair would fit just fine. Nope. Could it be the gas cylinder in the back of the van made obstructed the chair from fitting, yep. The new driver and attendant again tried to take off her seat to collapse the chair...I took off the wheels and they got the chair and wheels in the back. This time I got to ride in the back seat with Kasie. This driver was WAY better and we both felt better because we were actually in a larger vehicle as well. Whew!
Back at the ranch...oh I mean Green Park, that's what they call the facility we stay at. Up to the room and low and behold we weren't even in the door and the sister and doctor were her to check on her.
Talked to Jack....filled him in on today's adventures. Time for bed, we're trying the "Do Not Disturb" sign tonight
DAY 7 - March 7, 2008 / Friday
Wow, we both slept pretty much through the night. I got up about 5am...and Kasie just got up about 7am...ah she was texting a little earlier....but went back to sleep. Maybe we're both FINALLY getting used to the time. Wouldn't that be nice.
Well the sign worked until 845am...knock from one of the sisters looking for yet ANOTHER urine sample and get Kasie's BP, accompanied by of the managers looking to know if we were going to want lunch. Yes, vegetarian - Kasie too now after the lamb-burger incident. Egg sandwich? - uh no.
I asked the sister if the urine sample was going to be an everyday thing and if so give us the jar the night before...she said no, but there had been a problem with yesterday's (like they lost it?) I told her that Kasie had to do the one for her yesterday morning and then one at the other hospital because they hadn't sent the first one over...oh she didn't realize. Uhvey!
Not even a minute later she was back to find out if we had received a yellow card when we left the other hospital. No we received nothing.
Kasie's off to PT now...more later.
Good PT session. Kasie's calipers (leg braces) were ready. She stood and practiced shifting her weight. Her right leg, despite the brace was not remaining locked so they adjusted it several times but still having some issues with it. So they'll adjust it more and have it for afternoon session.
Another stem cell treatment this morning, this time it was intravenous into her left hand. Kasie complained it was pretty painful at the site itself...sister said no. Kasie said she could feel the intravenous solution...sodium chloride of 100 ml with the stem cells injected into that medium, radiated up from her hand through her wrist and into her lower forearm. This method of receiving the stem cells takes about 20 minutes and is done in the room. So while in the room we had the room cleaned by one of the staff. For some reason he really seemed to want to "wash" the walls...but we got the floors cleaned, trash dumped and the bathroom cleaned too and fresh sheets. They won't do anything or enter the room unless we are present, no kidding...they're always here!
After her treatment we were visiting with Will and his mother, Marcia about Will's treatment and Kasies...comparing notes a little... His wife Marci is at home with their two kids and dog (Kassie Bell? spelling)...they communicate daily with them via web cam. Kasie has a web cam on her laptop...we just haven't figured it out yet...heck we haven't looked at how to figure it out yet...probably pretty simple if we took a moment to check it out, eh?!
Then Trevor, a paraplegic from Australia, stopped by the room to tell us all that the group meeting was on downstairs in a few minutes. So we all went.
Occassionally, Dr. Geeta Shroff and Dr. Ashish Verma have an open forum discussion with the patients and families who want to participate. This is an opportunity for all the patients to: compare notes in the presence of the doctors; discuss each others progress; ask questions; voice concerns; discuss the protocols and procedures; etc.
Most of this discussion takes place in very general, layman terms. Scientific protocols, research, and techologies are avoided according to the doctors because of pending patents in both India and the USA, therefore they are extremely reluctant to divulge too much, if any information as it pertains to the ACTUAL background, research and development of the stem cell technology they are using.
So here are my notes:
? indicates someone in the group asked a specifc question regarding this subject
- ? injections / therapy varies on weekends – typically yes there are injections on Saturdays; Sunday varies
- ? how many cells per unit? millions – microscopic
- ? how many units per patient...varied protocol depending on patient -- type of injury or disease
- expect 50% of stem cells to die at end of the day – how do they know this...it is from research with tagged (marked) stem cells in mice; need to consider the stem cells as a biological product and ~ 50 % reach intended site...or other sites along the way that may need some repair/rejuvenation...the remaining do not reach a destination and die off
- by using EMBRYONIC stem cells, these are essentially BLANK stem cells that must be trained to perform and become what is needed of them...they are not specific differentiating stem cells
- therefore the belief is they do not initially know they must be a skin cell to repair a burn, or a brain cell to repair the visual cortex, or a spinal cord cell to repair the spinal cord this all comes with time and 'training'
- in the case of spinal injuries the 'training' is a addressed through physical therapy not only to address the muscle atrophy; but also by asking the body to do something that it cannot the stem cells 'learn' their function and what is needed to help the body do what is being asked of it
- muscle atrophy is a concern because without tone and relative strength, even if the the stems cells repair a site, the body must be prepared to handle the balance, coordination, flexibility and strength and mobility to ... stand and eventually walk
- they find it easier to inject pre-differentiated cells
- brief history: in lab for 2 years in the late 90's; 'growing' and culturing pre-differentiated cells from ONE donor; grew to time when under microscope can determine they become differentiated cells
- Dr. Shroff and Dr. Ashish do not believe it is ethically wrong to use embryonic stem cells derived from Dr. Shroff in-vetro-fertilization (IVF) work, however because of the known controversies world wide about stems cells (embryonic and fetal) they have chosen to utilize only 1 line, derived from only one donor
- (these donor embryonic stem cells were “left over” biological “waste” after the donor patient had IVF, these cells would have just been destroyed as they were no longer necessary had no actual value, the value has come from being able to culture and grow an infinite amount of stem cells from this one donor)
- the stems cells are cultured and divide and replicate themselves (2 become 4 become 8 become 16, and so on and so on); some are culled out and frozen to be used in treatment; others are used to continue to increase the amount of stem cells
- the shelf life of the frozen stem cells has been considered 6 months, recently it is believed that has actually been extended to about 1 year
- in a spinal cord injury the intent is for the stem cells to fill the gap/breech left by the injury itself
- injections are at various places in the body because it is not only the injury site that needs to be repaired;
- injections done during the 'procedures' are above, below and at the site of injury
- the “electrical” stimuli needed to make the parts of the body below the injury function is unable to bridge the gap that exists at the site of injury
- challenge: there is scar tissue present at site of injury, so while the stem cells repair the area by increasing the girth of the area and allowing the some electrical stimuli to be conducted, they do have to contend with scar tissue
- ? why not remove the scar tissue prior to giving stem cells: because despite the scarring, there are important fibers that remain and allow for some conduction, and some of the scar tissue may heal; however it (scar tissue) will never totally heal
- ? in theory 1 neurological stem cell has capability to reach site, and divide and replicate infinitely allowing for the healing process to occur; however, cells mature and the unending regeneration of stem cells does not continue in the body athe the injury site indefinitely; the stem cells 'created' in the lab are not allowed to mature
- ? success previous patients; 1st patient with a deadly brain disease still alive after 5 ½ years; had not been expected to survive
- ? success of previous spinal patients: 1st spinal cord injury patient was in 2005; had different protocol than they have developed now (as result of seeing success over the years); he had only 2 procedures done during the course of his treatment, however he has had some success and his walking (apparently with a staggered and assisted gait); he is scheduled to return for more treatment under the new protocols and Dr. Shroff hopes to see additional improvements
- ? who makes the best patients; recent injury; age, gender...
- young women do seem to respond the best to treatment because of the natural hormones in the body
- time since injury is a factor; however, it is believed anything chronic (over 1 year) really doesn't differentiate between 5 years and 15 years as far as receiving treatment
- ideally believe treatment should happen at time of initial surgery for spinal cord injury; to immediately start healing process and have no build up of scar tissue
- goal to be able to utilize this technology as first line treatment after traumatic injury to promote healing process immediately
- equate stem cell therapy to being pregnant: initial injection begins the 9 month process of being "pregnant" and allowing for the development of the stem cells through the similar stages of the embryo – fetus – newborn
- each subsequent injection extends the 9 month process
- therefore EACH stem cell injection must be treated as if the patient were pregnant, which means: proper rest, exercise, good diet, no alcohol and no tobacco products
- this is not just for while the patient is here undergoing treatment, it must continue during the development of each of the stem cells that have been injected per both Dr. Shroff and Dr. Ashish
- ? currently not published and not peer reviewed; pending patent
- ? pharmaceutical companies not interested in development of stem cell treatments; not because ethically against it, but rather because of negative impact on their $$ in developing and selling medications
- Indian government does have the ability to shut down the operation totally; therefore Nu Tech does provide the government with everything they want and follows the protocols set forth by the government; everything provided except of course the actual patent pending research and development side of the treatment
- ? how many successes needed before it is accepted that this treatment works
- realistically Dr. Shroff feels that even with 5 patients who were "incurable" to have show improvement and success that should have warranted acceptance of success, however that is not the case
- with over 450 stem cell patients treated by Nu Tech to date, with NO side effects and no adverse reactions and all showing SOME sign of improvement Nu Tech has invited others to look at what the patients are achieving and what the patients themselves have to say; because of the pending patent, no accreditation or reviews from other labs have been solicited at this time
- ? no malignant tumors like in other stem cell therapies
- ? if so would utilize another line – not expecting problems; but if so would look at another line
- Dr. Shroff believes because this is the ONLY embryonic stem cell therapy in the world that has been developed without animal products or serums as mediums for growth; therefore has had no 'allergic' reactions; this make it possible to use the same line in everyone
After the meeting Kasie had PT again. More work on the calipers and more standing; still having some issues with her right knee not staying locked, so they're going to try and fix it again for tomorrow.
After PT we just hung around for a bit and then went to yoga. Dr. Shroff called Kasie out of yoga to try and void her bladder on her own.
Another stem cell injection into Kasie's arm this evening...again she said it really made her sore...and she got fairly flushed, but BP okay.
Then a Friday night out on the town...sort of. Marcia lent us her car/driver, thanks...expanded our exploration opportunities outside of walking/wheeling distance. Lots of traffic getting there...8 lanes of cars crowded into 4 actual on the ground lanes...still can't get used to ALL the honking...it's insane and sound danged loud all the time. This driver was good, not anything like the psycho from the other day. We went to the Khan Market for a bit...drive about 20 minutes away. Very upscale by the standards we've seen thus far. Very bling bling even! Becky will love her....whatever it is - it IS beautiful...and I got some shoes....yes, a girl (even a game warden) can NEVER have too many shoes, especially if their pink and jeweled...and on sale no less, sweet! Perry do you think we can make a uniform exception?! We found some neat other stuff...but wow some was super pricey....and we only had a little time to shop because we had to get the car back so the driver could take Will's mother-in-law to the airport for her flight home.
Upon returning we ordered dinner in...McDonalds if you can believe it...McDELIVERY, no kidding. Seriously the little delivery guy showed up with a McDelivery hat....we need one of those! And get this, they have veggie burgers...not Boca or Garden burgers...but REAL veggie burgers...it floored me for sure, had to try it, since it was getting late, about 8pm, and we were hungry and just wanted something quick; so I actually ATE McDonalds, holy smokes! And if Kasie eats another piece of chicken I think she's going to cluck...and perhaps sprout feathers and fly home instead of walk home, so since no beef in India at Mickey D's, she had the fish filet. Oh and they DON"T do milkshakes in India - at least not at the Green Park MD's; found that out the hard way....hope we didn't scare the delivery guy too bad....and Kasie - he was 12.
So after dinner we crashed.
Day 8 - March 8, 2008 / Saturday
Well, we've been here almost a week now, time is flying by...but dragging at the same time if you know what I mean...still one big blurr.
Kasie's on her way downstairs for PT.
I did some laundry this morning, how domestic.
After PT and her injection this morning, we're planning on hiring a car to go exploring and perhaps some sightseeing because there is no afternoon PT on the weekend and she can get her evening injection when we return. The quote for the day:
'THERE IS A DIFFERENCE BETWEEN INTEREST AND COMMITMENT. WHEN YOU ARE INTERESTED IN SOMETHING YOU DO IT ONLY WHEN IT IS CONVENIENT. WHEN YOU ARE COMMITTED TO SOMETHING YOU ACCEPT NO EXCUSES AND PRODUCE ONLY RESULTS.'
Later....
So another morning session of PT with Shivani. Dr. Shroff came down to check on Kasie and her bladder and bowel functions. Kasie is having some success with control at this point and Dr. Shroff, as well as Kasie is very excited by this. Dr. Shroff also wanted to see Kasie try to walk today with the aid of the calipers. The right knee, despite the braces continues to be problematic and 'buckles'. It is not just the knee itself that is causing the problem, but the lack of muscle tone in the quadricep and hamstring....this will need to develop more and will with PT.
After PT, Kasie had another round of stem cells intravenously (IV) up in the room. Different/new sister this time. She was having extreme difficulty getting her IV line into Kasie's hand. Kasie was experiencing quite a bit of pain and was complaining to the sister, who was pretty much ignorning Kasie's complaints and concerns. Kasie said she could see the small needle actually poking through her skin, not into her vein...and asked me to look, when I stood up to look the sister pulled the needle. Instead of in the hand, I suggested they give Kasie the IV in the arm...which the sister then did and it was much easier on Kasie since the sister was able to FIND the vein!
A little bite to eat for Kasie...and then we were on our way, much later than we thought....but still at noon...we had plenty of time to explore. We hired a car and driver for the day (8 hours for $25 USD, sha - wing!) Marcia and Will joined us, and followed in their car...we can't all fit in one since these cars are so tiny and we need to fit Kasie's wheelchair.
Oh, while waiting for the car an driver; we learned today that perhaps, just perhaps the fridge problems weren't actually fridge problems, but more like Kasie and Sonia not realizing that when we took the key for the room out of the little thing-a-ma-bob that it inserts into when we leave each time, we actually are turning off the power to the fridge....uh duh! Would have been nice to know. Problem solved.
First stop: Qutab Minar complex...well that's after we sat in a traffic jam forever and didn't go anywhere. I must have been pretty long I reckon' since the driver actually turned off the car for awhile. Proably in part to the traffic lights not working, and probably all 13 million plus residents of Delhi, and then throw in the tourists for good measure decided to be in a car going the same direction we were...traffic lights out due to the power grid failing the night before. We do seem to lose power every evening now for a little bit of time. Anyway, finally at the Qutab Minar....
A vast array of buildings and ruins dating back to the onsent of Islamic rule and are examples of Afghan and Indo-Islamic architecture.The Qutab Minar, Delhi's oldest landmark, is a towering sandstone minaret - the tallest minaret in the world in fact. Constructed as a victory tower after the defeat of the last Hindu kingdom in Delhi in 1193, its is 238 feet tall, has 399 steps, and tapers from a base of about 49 feet to just over 8 feet at the top. It is intricately carved with excerpts from the Qur'an.
Also located at the complex, in the ruins of the mosque (Muslim place of worship) is the Iron Pillar of Delhi. It is a metallurgical oddity in that it's origins are unknown and the technology used to create the rust-free iron pillar has not been determined. Um - we saw rust on it...but that could be why it's now closed and fenced off. You see, the traditional belief was that anyone who could encircle the pillar with their arms, while their back was to the pillar would have their wish granted.
Kasie was a rockstar...lots of people wanted to take THEIR picture with her. Must have been the blingy top and belt....or the pure white skin, or the wheelchair, or....it's just that it's Kasie!
Quite a few green parrots, and tons of pigeons abound.
Next stop: lunch....the Essex House, no we're not in NY. A very a nice upscale, clean restuarant...the Indian food was excellent! and inexpensive...$15 USD for the both of us. We talked about being "pregnant." Oh did I mention the "being pregnant" thing yet? Hold your horses everyone...it's NOT REALLY being pregnant. But this is the only time I know of when "just a little bit pregnant" might actually cover it. You see, each stem cell injection is in essence creating the environmental and health concerns of actually being pregnant for each of the stem cell patients. Each embryonic stem cell needs 9 months to fully develop. And each time Kasie recieves the stem cells (which is twice daily), she actually extends her 9 months. So not only for the 9 months from the 1st stem cell injection (Kasie now has set an alarm on her cell phone for when the "baby stem cells are born") but what we all seemed to have missed when discussing this over lunch - was that also for the next 9 months for each subsequent injection...including the last injection (in May) she is under doctors instructions to really take care of herself, as if she were pregnant. The better she takes care of herself, the better her chances are for continued success and reaching that ultimate goal: TO WALK AGAIN!
So while no booties or baby blankets are necessary...Kasie will need the continued support of family and friends to ensure what she is now calling her "little baby stem cells" develop properly. First "born" expected on December 4, 2008...and last born (of the May injections) sometime next February 2009.
Today, though Kasie is still full of energy and wants to exlpore some more...and she can roll and I can push...so onto our next stop...
Humayuns Tomb
Mughal architecture only surpassed perhaps at the Taj Mahal.
Humayuns tomb was built by the wife of the second Mughal Emperor Humayun, after he fell to his death in his library. This was in the 16th century. The tomb itself is actually the finally resting place of more than 100 people throughout the elaborate and sprawling layout. It is a series of quadrangle divisions and introduces the "charbagh" (four garden area).
Lots of Myna birds everywhere, a few green parrots again...and we saw several, what appeared to be eagles inflight and hunting on the grounds...no one around to ask, so I'm going to need to do some digging about what bird they actually were. They were definitely a raptor of some sort...similar in coloration and size to a golden.
Again Kasie, a celeb now in her own right had requests to have her picture taken with others. We also met a German traveler, Andrew, who told her about a German man who wrote a book about his travels to India by himself...the twist was that he too was confined to a wheelchair. Andrew will email us the name of the book and we'll see if it comes in an English version....would be an interesting read I'm sure.
And on the way back to Nu Tech, we had to pass them, so we stopped briefly at...
Lodi Gardens
Named after the Lodi Sultan dynasty consists of several tombs to various Sayyid and Lodi rulers. They are beautifully tended gardens, including the National Bonsai Tree Park (um, we missed that part, go figure). The birds though - amazing the songs eminating from the trees as we strolled/rolled our way inwards was unbelievable. And the fresh and crisp smells of the flowers...we so left behind the pungent odors of the streets of Delhi...all within a mere 20 or so feet. And it is truly amazing at all these sites...once you "enter" into these snapshots in time...you leave behind all the hustle and bustle and even the sounds of Delhi. It is so refreshing and so peaceful...wish we could get there without a car...we'd have to go everyday, that's how enchanting this place was.
And finally back to Nu Tech...before 7pm. A full day for sure...
End of week:
Our first week in Delhi India has come to a close...we've been here 7 days now and it has been a whirl wind of excitement and adventure thus far. Kasie's treatments, in a nutshell, seem to be going very well and she is seeing some progressions in her PT.
Our girl is homesick from time to time...but your e-mails, calls and texts sure help perk her up. I hope that this website is helping to keep you all informed and is answering questions you may have about what Kasie is undergoing and what it's like in India. We are going to try and get a 'local' phone tomorrow or Monday, so she can stop running up her phone bill. At $2.29/minute - for both incoming and outgoing calls...while on her domestic phone from home...yikes that sure adds up fast.
She figured out the webcam (at least our end of it)...so now we need to test it out with someone...
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