One Week to go!

Jill continues to take small but encouraging steps forward.

First, up to this point Jill's disease has left her completely unable to move her tongue.  However  this week she was very excited and happy about her renewed, albeit slight, ability to move her tongue.

Second, she has shown poor coordination in attempting to simultaneously complete two motions or physical actions. For example, tossing a ball underhand requires the arm to swing and the fingers to release at the right moment.  This has been too difficult in the past. Today she is able to toss the ball with good timing of release.

Third, she has been able to take sips of soda which she had given up on before we arrived in Delhi.

In other news of the week, I picked up some sort of bacterial infection or stomach virus that lasted three days ; these are the kind of details I look forward to keeping you appraised of on the blog.  I stayed in the clinic as the staff nursed me back to health just in time for our visit to the Taj Mahal.

Jill's sister Erica arrived on Thursday afternoon and hit the ground running. We left for Agra (Taj Mahal's location) Friday morning and then continued to the princely city of Jaipur on Saturday afternoon.   Despite the relatively short distances of approximately 150 miles of each leg of the journey and the fact that most of the trip was on a divided highway, the traveled at best at an average of 35 miles per hour.  I was very glad to be in the capable hands of a driver, within a nice roomy vehicle, as we watched the freeway extend from 2 lanes to 4 or 5 on numerous traffic-rich occasions.  We stayed in two nice hotels  and guides showed us around both destinations.  My only regret is that we didn't have a little more "pool time".

Despite the 110 degree heat and the 5 hours in the car, Jill handled the trip quite well. No doubt the addition of her sister played some role in keeping her spirits high for most of the trip.  

In Agra we saw the Taj Mahal and the Red Fort.  In Jaipur we saw many more less famous sites that can be seen on a website that  I  stumbled on - http://www.jaipur.org.uk/jaipur-photo-gallery.html  

Seventh Week

As I write, it is 111 degrees, making it very difficult to go outside for anyone and in particular, hospital patients.  The fortunate people stay indoors with the AC on and avoid the midday heat so long as the power is on.  Power outages, however, are common in India and of course when everyone has their AC going full blast, the chances go up. A big business here is back up power generators.

Jill really enjoys the company of the other patients at the clinic who congregate daily in the lobby or out front when it cools off a little. They offer lots of encouragement, give her a break from her parents and give her a feeling being part of a social group.  Also we arranged a massage for her as well as a trip back to the Dilli Haat market to buy some gifts. 

 On Friday of the seventh week Jill had her second intensive procedure receiving a dose of stem cells in the lumbar area.  The toughest part was staying still for 5 hours and in bed until the next morning.

 Jill's balance seems to have taken a turn for the worse this week with several near falls and real difficulty standing up straight.

The doctors say that it is normal to have good and bad weeks and, in an ironic twist, they were encouraged by some emotional moments this week- Jill was sad more often and for longer periods than normal.  They said that that this indicates improvement in her ability to understand the seriousness of her condition.   

Because the hospital is closing at the end of the month the patients are starting to thin out and there are only eight patients left with a full staff.  I am hoping this results in extra attention for Jill.

We look forward to Jill's sister Erica's arrival on 5/21.  She will be here for 6 days and we have arranged to take a trip to Agra (Taj Mahal) and Jaipur over a long weekend.  

This is the week that I can honestly say we have started to notice some progress in Jill's condition.  Several days ago some of the other patients and family members started  telling me that they noticed Jill's walk improving. Honestly  I didn't really see any change, however over the last couple of days we have noticed that her balance is improving and her walk has improved slightly.  Although  few and far between she has also managed to say  a few words that were understandable.  The doctors noticed as well and informed us on Friday that they will be stepping up the stem cell dosage. So, I think we can say that it was week 6 when we noticed something changing.    We just pray that the progress continues and possibly accelerates.

The clinic is starting to thin out a little bit due to its closing down in June for renovations.  The fact that patients come here for  a minimum of a month tells me that we are going to finish off our stay with the clinic at 50% occupancy. I'm hoping that means there'll be plenty of focus on Jill.  Another method of administering stem cells that seems very odd to me has turned up.  For the last several days they have  been giving Jill a topical dose of stem cells on her tongue and in her mouth.

India is in the midst of its elections which take several weeks and if I understand correctly all the votes are counted manually.  Election day here in New Delhi was on Thursday and the temperature has fallen this week to a moderate 106 degrees.  

Jill's weekly activities included a trip to Dilli Haat on Monday, a market that sells regional crafts and food.  Every two weeks the market changes vendors so we can go several times and not see the same things.  Jill is not much of a shopper but she fell in love with some beautiful marionettes which she purchased and is quite pleased with.

Wednesday Jill had her Pic line removed.  This is a long term IV tube that was part of an antibiotics delivery system that she no longer uses.   She was very happy to have one less reminder of her condition. Now if she could only get rid of the feeding tube!

On Thursday, Jill's high school friend Alvin visited Jill again. It is very nice to have some company, particularly one of Jill's closest high school friends.  We tried to take him to Dilli Haat, but due to the election in Delhi most businesses were closed,  so Alvin missed it. The normally packed and noisy streets were eerily quiet that day.

On Friday, Jill splurged and got a on pedicure ($4.00).  Next week she'll  will start getting  a weekly massage ($10 for 90 minutes).  

We're half done!

This week started off with Jill moving to another hospital for a three-day procedure.  She headed to the other hospital by taxi at 11:00 AM, settled in her new room by 12:00, and was whisked out of the room down to the OR at 1:00.  The main procedure took about 45 minutes and involved inserting a very small plastic tube through the side of the spine into her cerebrospinal fluid and pumping stem cells around the spinal cord. The procedure turned out to be the easy part- the 5-hour period laying down on her back without moving appeared as the most difficult part of the task.  The two bricks under each of the lower legs of the bed, acting to tilt the bed in order to bias stem cells toward the brain, did not improve these comfort levels.  Let's just say we don't want to repeat the last few hours of that ordeal.  In comparison the balance of the three-day stay was a breeze.

 

Many of the patients suffer headaches and other side effects as a result of the procedure- thankfully Jill had none.  The balance of the week she went back to her physical and cognitive therapy.

 

We have been told by Dr Shroff to expect to see some results within a week. So far we haven't noticed anything but remain hopeful that we will see something soon.

 

It has been a hot (around 110 degrees), dry and dusty week in New Dehli, so trekking around the city during the day is not a really appealing to anyone.  However we braved the heat one day and visited the largest Hindu temple in the world, BAPS Swaminarayan Akshardham, http://www.bbc.co.uk/religion/galleries/hindutemple/  .   Turns out it is built recently, has a staff of 800 employees and is free.

End of the third week of treatment

It's been a slow week here in New Delhi, no real news to report other than it's getting hot over here with temps hovering in the  100-104 range in the day, but cooling off to around 75 at night. Next week it's supposed to get closer to 110 and I am told that it gets to around 115 in May.  I was under the mistaken impression that it would be hot and humid here, but I was pleasantly surprised at how dry it is. On the other hand something that was not such a nice surprise is the wind combined with a very fine airborne sand.  Nothing's better than preparing for dinner with a nice cool shower, putting on clean clothes  and walking out the front door and getting  hit with a hot blast of grit in the face, then feeling the dust making its way between one's neck  and shirt.  

Jill is in good spirits, diligently does her work and is a favorite face around the clinic.  Several  times a week she does have her  low moments that  last for only a few minutes.  We get out of the clinic daily and go to the market where she continues to enjoy a eating brownie. It isn't easy for me to asses her strength and balance as they seem to vary daily but her PT does think she is getting stronger and has her on a treadmill.  Next week the pace picks up a little, she goes to the other hospital for a three day "procedure" starting on Monday  and they plan to double  the cognitive therapy when she gets back to the clinic.

I have added more photos and some YouTube videos.   For those that don't watch YouTube videos  much, to avoid the start stop due to slow download speeds, I just turn the volume down and let them run through once, then play the video again and they play through without stopping. 

After two weeks of treatment

 It's the end of the second week of treatment for Jill.  She did go for her first procedure on Tuesday, which involved injecting stem cells in her neck.  Although it's difficult for me to notice, her physical therapist informed me that she is scoring higher on her balance and strength.  They have a little obstacle course that's composed of small stairs and ramps which she walks through and they mark her down if she needs to hold the rails, stops on the stairs etc. 

Her days consist of two physical therapy sessions, one or two stem cell shots and one or two hours of cognitive therapy.  The cognitive therapy is tough on her because she knows how far she has slipped back and really dreaded going initially.  Her instructor encouraged her  to come and help with the younger kids and  she is now going without complaints or sadness.  There is definitely no shortage of kindness and empathy from all the staff members in the facility.  

With the help of a wheel chair, Jill has gone out several times into New Delhi and looked around a little. We have taken all types of transportation, from the infamous green and yellow three wheelers to the cabs that looks like a '50s vintage English cars. Then there's our least favorite, the taxi driver that hangs out across the street from the clinic who we avoid if at all possible. The problem is that the clinic arranges some of our adventures with him and we just have to grin and bear it.  This guy is looking for trouble, trying to intimidate other drivers and really aims for pedestrians, forcing them back to the sidewalk or to at least dash out of the way . We have gone shopping for bargains at the local markets as well as a posh western style mall.  Unfortunately Jill can't drink tea these day's but we did stop by the Imperial Hotel, http://www.theimperialindia.com/home.htm . She decided that as soon as she's able, we're coming back for high tea, very "upper crusty".

I'm sure the highlight of the week was when her high school friend Alvin came to visit on Saturday. Alvin lives in Hong Kong and works for Cathay Pacific airlines. It was a very pleasant surprise and Jill enjoyed hearing about what Alvin's up to  these days.

Jill's sister Erica is working for the CDC during the summer and will be in the Nanning, China office.  Hopefully Erica will be able to come to India for a visit.

After a week

We are now ending the first week of treatment.  The weeks lows include everyone getting a little sick including Jill and the high is the fact that Jill  has noticed a positive change in her  swallowing. 

Lately she has not been able to take any food orally  and just uses a feeding tube. The problem being, she is unable to chew or coordinate tongue, pallet etc, to successfully swallow. During that last two days she has been able to consume part of an orange and a brownie.  

The other high was on Friday morning when Dr. Schof scheduled a meeting with all the patients and caregivers for a question and answer session. There were about  20 patients present and the session started off with patient introductions and brief summary of their experiences. About half were new enough not to have much the share, but several had been here before and shared details with the group.  Paraplegics report major improvements in muscle control. They are not able to walk but they can stand and the use the toilet which they could not do before. One case that I thought was very interesting was a Doctor with Parkinson's tried the treatment. Her son, also a doctor, came with her but was claimed to be quite skeptical. They mother and son both claim that there is no question that her symptoms have be reduced to the point that she is not taking her medication. Her knee jerk was brisk and now it is normal and her tremors are much reduced (even without meds).   

Regarding the treatments, Dr Schof has a rather mysterious way of administering the schedule. Generally they give one or two doses per day of stem cells, either by IV or inter muscular injections and sometimes by IV drip. It is not clear to me how they decide on the one or two injections. There is one other "procedure" as they call it, that is given in another hospital, this procedure involves directing the stem cells more in the area that they are needed, generally they are given somewhere in or around the spine.  Patients are no notified more than a day in advance that a "procedure" is going to happen. Jill had one "procedure" scheduled but it was cancelled due to the fact that she was running a fever.

The doctors and patients that have been around say that results usually show up in the first few days, then after about 6 weeks and most of the time continue after the patient leaves. 

I am going to try and post every few days and if I can figure it out I would like to put some video and photos on the Blog.

Steve