My sweet little kid

Cash has been home for two days. It is so nice to have his little presence in the house.

Unfortunately, he is sick. It doesn't seem to be respiratory - he's breathing fine - but he's very lethargic and has no appetite. Some of it is probably jet lag, but it seems to be more than that, especially since he had a little fever today. I plan to take him to the doctor tomorrow.

Due to the illness, it's difficult for me to make any judgments about the results of the stem cell therapy, but I have a few initial observations. His eye contact seems significantly better, he has some new or improved signs (cookie, radio, C, high five), he seems more responsive to language spoken to him, he played a little ball with me which he has never done before, he helped more with getting dressed, and he seems to stand a little stronger. On the other hand, his walking is definitely worse - not only not better, but worse. I think that is attributable to the problems with his braces in India and inconsistent therapy. I am hopeful that his therapists here will get his walk back soon.

Regarding the brain scans, I think they are remarkable. However, we aren't sure exactly what the brain scans mean, because it's not like they exactly line up with his behavior. Here's what I think and hope: I hope it means that now his brain is functioning better and we'll start seeing faster progress. It does not mean he's suddenly going to look like every other five year old - it's taken all those kids five years to get there with their normally functioning brains and bodies. Even with the best outcome, Cash still has to go through all the steps and stages everyone else does. But maybe now, we'll start seeing a little more progress, a little faster progress. - Of course, he has to get healthy again first.

He's home!

Cash's welcoming committee at the airport:

I have very awesome co-workers.

Cash was a little tired and shy when he arrived, but he seems happy to be home. He has been moving around the house checking on all his toys. He looks great.

In the air

Cash and AD are in Denver, hopefully home very soon! I can't wait to kiss his fuzzy little head.

Homecoming

Cash's last day here in India has come. I've trimmed his nails, had his hair cut, and bathed him. In a couple of hours he will be on the plane back to the United States. Friends and family will be there to greet him and Dianne.

He is stronger and more engaged than I have ever seen him. From this point forward hi progress should be directly proportional to the efforts and the therapies directed toward him.

Perhaps the shrine in the clinic loby to the elephant god Ganesh has blessed our boy. Ganesh is known as 'the remover of obstacles'.

It's a boy

Yesterday we went for an ultrasound to check all of Cash's organs. Although it did not hurt him, he howled when the goop was applied to his belly (moms you know the drill) and remained PO'ed until off the table. The good news: everything is where it's supposed to be.

Miraculous!

Before: December 2010










After: February 2011







Well, I have been the optimistic skeptic throughout this stem cell process. If there were anything definitive for proof of progress that I would hang my hat on it would be the SPECT scan. We went for the follow up scan this morning. Although Cash cried every time we got near the machine, I was able to sing him to sleep on the table for the duration of the scan.



It took four hours for them to do the scan and process the images, by which time Cash and I were well and truly done. But when the technician showed me the results and said they showed near 'normal' brain functions I was overwhelmed.

Initially I was just stunned to see the photos you see above. This was unreal. Really, I didn't know how to process it. And then, briefly, I was angry. Unless you have had a special needs child, you will never understand how completely devastating hope can be. You want to hope, you need to hope, but you have to accept. How dare they, if this is not 100% genuine, give me this kind of emotion.

By the time we got back to the clinic I was moved to tears. Dr. Schroff met us in the lobby and asked if I wanted to discuss the results. I told her Cash had not eaten lunch and I needed to feed him, besides I was afraid I might cry and preferred we discuss it in private. (Dianne, by the way, has come down sick and spent the day in bed. Despite her valiant efforts, even stirring has been an effort.)

When the doctors and I did discuss the results, it was difficult to follow. From what I understood through swimming emotions, his brain is getting the oxygen it needs in most parts and should resume the near normal function it has been denied for years. The one area still showing some purple (indicative of low blood flow) corresponds to the speech area of his brain. But, overall, improvement is dramatic to say the least. Even areas that were orange are now yellow and white indicating the best possible circulation.

I have seen subtle changes. Maybe he stands straighter, his vocal cries of insistence are stronger, or he looks at me longer with more understanding. But nothing I could say was a definitive leap in his natural progress.

Dr. Schroff says things are due to start taking off and given the results we have seen today, I fully expect to see some dramatic progress within the next six months.

Countdown

We are in our final week here at the clinic. This morning I met with Dr. Schroff and Dr. Asis to discuss where we are at and what we need to do moving forward. They both feel that he has made progress and will continue to do so. Not only will he walk, they say, he will also talk and make great developmental strides toward catching up to his peers. I hope very much that they are right. They would like to see him come back for a second round of treatment in six to eight months.

This afternoon we are going to get an ultrasound to check his organs and tomorrow morning we have an appointment to get his second SPECT scan done. We will get the results before we leave and discuss them with Dr. Schroff.

In the presence of greatness?

Doctor Geeta Schroff has patented her method of working with stem cells. She has been conducting treatments since 2002 on over 850 patients to date. She has traveled the world promoting the treatment and wants to see it universally available for many terminal illnesses. Still she is a controversial figure because the treatments have not undergone clinical trials and her research has not been verified.

Stem cells are produced naturally in every ones body. We have more of them when we are young and produce fewer as we age. Dr. Schroff even claims that one of the first things a patient may notice is looking younger. The idea is that like a magic bullet these cells go wherever they are needed in the body and begin to rebuild and repair.

IF this process works as claimed, Dr. Schroff and others like her will revolutionize the medical field as we know it. We may well be in the company of another doctor Jonas Salk or Alexander Flemming. For Cash's sake, I certainly hope so.

A day at the zoo

We took Cash to the zoo today. It was his first trip outside the clinic in weeks and he seemed to have a good time. I think his favorite was the leopards who came right up to the fence and growled at us. He also liked the elephants and a particularly adorable sloth bear.

Tammy left tonight on the late flight.

Tammy loves Cash

This is Tammy Sells posting. I am Cash's aunt. Josh's sister. I have been here since the 10th and it has been an incredible experience.

When I got here Cash was getting over being sick, so there was a lot of time spent hanging out on the bed reading books and listening to his radio, frog, violet the dog and new fridge magnet(noise maker) that I brought him for Christmas. Some of you may already know but Cash likes to play all of them at the same time. To those of us around it can be a bit much and unable for our simple ears to be tell the difference from one to the other. He knows exactly which one is playing and what song. This is evident because he will change each one to songs that he likes or restart a song that he hears come on. I believe his favorite is his radio but that seems to vary every once in awhile.

After he got to feeling better it is pretty hard to keep him still. He is walking up a storm. At first he was it was better with someone holding both arms. Now today he wants you to let go of one arm and let him balance and walk. I was way impressed but not good at it and accidentally let him bonk the wall. He was a little angry at me but rallied to go see his neighbor Tyler.

The day before yesterday he had a treatment and had to lay flat for four hours. He was so good and did not fuss at all. We read, played, talked, and mostly listened to all of his musical toys. If anyone is ever confused about what to get Cash for his birthday, it should always be any toy that makes music. Stuffed animals, or even hard sided toys.

I can't remember which day it was but Hailey his cousin called one day and on that day Cash was very talkative. He signed every word I knew that he had. I have since been told he knows much more but that was the most I had seen him communicate. He is getting to be quite the talker.

This morning it seemed that Cash had the brightest eyes I have ever seen. Smiley and just flirting to flirt. I do think he is homesick. I saw him cry when he was tired and had talked to someone from home before bed. He might really miss it here because he has so many people loving on him. The girls downstairs give him cookies. Someone at the front desk gives him candy. Every patient, it seems, asks him to come say goodnight before bed. This is something Cash is more than crazy to do. It was way more fun for him with his walker but he still wants to go even thought he has to walk or be carried now.

More cast and crew

Shavani does physical therapy with Cash sometimes.



Gracey is one of the nurses. I talk to her frequently simply because I can pronounce her name. At least I think I pronounce it right...





Hasha is Cash's occupational therapist. She is always mugging on him and calls him 'my baby, my sweety.' She is very enthusiastic and he seems to respond well to her.












Dibin has been his regular physical therapist for a while now. We like him. Cash had a great session this morning walking a few independant steps between us coaxed by a piece of chocolate. Dibin seemd almost as excited as I was by it.


We also have a new patient at the clinic named Jerry. He is from northern California and has Lymes's disease. He wore a t-shirt the other day that said 'Ticks Suck.'

Procedure

Cash's injection procedure went smoothly today. He had a stem cell injection in his lower spine as well as his upper spine. Afterwards he had to lie flat for four hours. Tammy, Dianne, and I rotated through keeping him still and entertained. This is only the second, and probably the last, such procedure.

Paparazzi

Yesterday Tammy and I went with Kessa to see the Qutab Minar- a famous Mughal minaret. Kessa is sister and caretaker to Tyler (the teenager who broke his neck playing football). She feels uncomfortable going outside the clinic alone so we try to get her out with us occasionally. I thought she was overreacting until I saw the response she gets from the locals. It's like she's a celebrity. Personally, I have had several dozen random Indians request pictures taken with me- it is bizarre. But because she is blonde, fair skinned, female, and larger than the locals Kessa gets literally mobbed.

I had just said that we should start charging 20 rupees per photo with Kessa to earn cab fair when the group of women shown below swamped us. Over 15 individuals had to rotate through getting a photo taken with her. She was a good sport about it all and conceded that it is a great confidence builder.


Today Dr. Geeta Schroff revoked Cash's walker. She says he has come to believe that he can't walk without it. It's a crutch, so to speak. So we are going to try it her way for a while. It's hard though because he asks in sign language to walk in the walker.

Tomorrow Cash is due for another procedure where he gets a shot at both the top and bottom of his spine and must lie flat for four hours. We'll let you know how it goes.

Symbol of love

Over the weekend we went to see the Taj Mahal in Agra. Agra is only 120 miles south of Delhi but the drive takes an insufferable five hours each way. When traffic is not at a standstill it is a white-knuckle car chase. Agra itself is dirty, crowded, and has few redeeming qualities. In spite of all this, the Taj Mahal is every bit as impressive as its reputation and well worth the visit. After all, this is considered to be the most magnificent architectural achievement of all humanity.

We left our hotel before dawn to beat the crowds and were rewarded with a spectacular sunrise. The light on the white marble changed with each moment as the sun climbed.


Tammy and Dianne are photographed sitting on the bench where Princess Dianna had her famous photo taken.

Valentine's

I can tell you what love smells like- just sniff the top of Cash's head.

Aunt Tammy

My sister, Cash's aunt Tammy, arrived in Delhi late last night. Her taxi driver informed her that her hotel was not in the best part of town and then offered to stay with her. She declined the hospitality.

Cash was delighted to see a familiar face and she brought presents.

Pattycake

Cash admires Bhawna's henna.

Little tea pot

I have noticed some interesting behavior in Cash recently. For one thing he has become aware of his shadow. I mean he's been aware of his shadow for a while but I just noticed him manipulating it in the last few days. Looking at his shadow on the wall he moves his hands and touches his ear. He entertains himself with rudimentary shadow puppets.

More interesting has been his recognition of the teapot. Favorite among his pictures recently sent from home is that of his white teapot (apologies to all the people in that book). For reasons of his own, Cash has always been fond of teapots and enjoyed playing with them. Yesterday Cash pointed at the photograph of the teapot and then pointed to the actual teapot in our room. What's extraordinary about this is that he realizes the photo is representational of the real object. Furthermore, even as dissimilar in appearance as the two are, he knows the concept is the same.

Finally, I think he is playing with his tongue more. Poking it out, touching it, even sticking it out on command sometimes. I don't know that there are more corresponding vocalizations, but it is a good sign.

Crash

Cash fell off his tricycle this morning and busted his chin again. The tricycle (henceforth referred to by me as 'That Stupid Tricycle') was given to him by his physical therapists to work on some different muscles. I think it was more for the cutesy effect of seeing him ride it. It is too small for him and he does not cooperate with the pedals.

The cut on his chin was small and opened up along an old scar from a similiar incident. It was quickly dressed and he was soon over it. Tomorrow it will just be a colorful bruise.

Patients

Tim and Vicki are leaving today. They are returning to their home in Seattle. Vicki has MS and has come here for treatments four times over the last couple of years. Because MS is a progressive disease, it is hard for them to know if or to what extent the stem cells have helped. They feel like it has been worth it but are not sure if they will continue.

Other patients include Zohere ('Joe') from Lebanon who is being treated for macular degeneration. Natpa from Iceland has a T-7 spinal injury. Rob from California has ALS and Dr. Berlin, Indian, suffers from Parkinson's. It is worth noting that Dr. Berlin was a noted physician and two of his three sons are presently neurologists. 15-year old Tyler Olson is from Iowa and broke his neck playing high school football. He has only been here a couple of weeks but says he is already experiencing some new sensations in his hands and feet.

Dr. Schroff claims that her ultimate goal is to make stem cells globally available as a first-line response to all major illness and injury. If there is any question about the extent of Dr. Schroff's own convictions, the woman shown standing in the photo is her mother as well as a patient. Immediately after a severe stroke she was brought to the clinic and given stem cell treatments. She has made a near full recovery.

The weekend

Dianne and I were able to get out and explore Delhi a bit this weekend. We went one day to south Delhi and saw the Bahaii Lotus temple and Tughluqabad fort. Dianne's dream of seeing monkeys was fulfilled at the fort as hordes of them descended on us in the late afternoon filing past us with scarcely a second glance. However, one violently objected when she tried to take a close-up photo of him with a flash. He lurched at her menacingly and I nearly peed my pants laughing.

The following day we spent visiting the Red Fort and wending our way through labyrinthine Chandi Chowk bazaar. Entire days could be spent absorbing the sights, smells and sounds of Old Delhi.

Cash was unfortunately confined to the room recuperating. Nora watched him and sang songs to him. He has grown quite fond of her and at a rate of $16 for the day, I am thinking of exporting her to the States.

Some days

Some days













not a lot












happens.

All clear

This morning Cash and I went to get his second chest Xray. It showed his chest to be clear. He still has a croupy cough and nasal congestion. Antibiotics will continue for the next couple of days on the advice of Dr. Shekar, the pediatrician.

Incidentally, Cash's chest x-rays cost 300 rupies each. That's about $6.59 USD. Why, again, is American health care so expensive?

Cash presents

The nurses here at the clinic really missed Cash while we were gone. Anjelia even brought him a toy truck made from blocks. As usual, he was more interested in the wrapping paper than the present. Last night Bem Bem brought him a tootsie roll lollipop that was literally bigger than his mouth. I don't think Cash has ever had a lollipop before and he didn't quite know what to make of it. We laughed as he tentatively poked his tongue at it. This may have to be a new oral motor stimulation tool.

The other patients, caregivers and staff also have expressed their concern for Cash. Much like at home, everyone knows Cash and my name is 'Cash's Dad'. Suits me fine.

New kid on the block

Cash is back on point. He will get his stem cell injection tonight. He went to this morning's therapies but, although he was feeling fine, Dianne and I decided to let him rest more this afternoon. Tomorrow he should be back to a full day.

We met the most adorable little girl today. Her name is Nehal. She is four years old and has a chromosomal deletion. She has some of the same characteristics (a bit disengaged when meeting new people) and faces similar challenges as Cash, although she has begun to walk recently. We had a long conversation with Seeme, Nehal's mother, who said the family lived in Colorado Springs for a while in the late 90s. They now live in Bangalore, India's Silicon Valley, and I think they may work in the technology field.

I watched some of Nehal's PT and she seemed to have a similar avoidance strategy to Cash. However, where he tries to go limp and unresponsive, Nehal was screaming as loudly as she could. When the therapists paused, she stopped. Her technique did not work out any better than Mahatma Cash's non-confrontational protests.

We look forward to getting to know them (Cash has not officially made Nehal's acquaintance) and to watching their progress. This was Nehal's first day.

Tickles!

Although not quite back to his usual energy level, Cash felt up for a game of tickles this afternoon. He's resting peacefully now.

Moolchand

Cash and I just got back to the clinic. We spent the last two nights at Moolchand Hospital on the instruction of the pediatrician. A chest Xray taken Sunday morning showed some evidence of pnumonia in his right lung. Despite their best efforts at the clinic, we could not keep Cash's fever down on Sunday night. So that night we spent in the ICU pumping Cash full of antibiotics. He responded well and we were moved to a private suite yesterday morning. There they continued medicating and monitoring him overnight and we were released today at noon.

Before we left the hospital they asked us to do a testimonial of our experience for their website. I consented and they sent in a film crew and did a couple of takes. It was a nice facility and they did seem to go out of their way to take care of us. Cash took it all in stride and even hammed it up a bit for the camera.

He seems to be feeling much better but he has been sleeping a lot. I don't know where this leaves us with the stem cell treatments.