First Day of Pre-testing and Meeting Dr. Singh - Day 4

Today we had the first day of pre-testing at Artemis Hospital. Indian hospitals are very busy but also very productive.

We arrived around 11 AM, and began with blood work. They tested for everything and anything, vitamin levels, you name it.

Then we moved to the x-ray zone and mom had a chest x-ray done. She put the hospital gown on backwards and couldn't seem to figure out why it wouldn't fit right (LOL). During her ECG we met a Doctor who was very happy to hear we were Canadian and was a big fan of Justin Trudeau. We ended with a Pulmonary Function Test to check Mum's lungs.

While she did that I spoke to Ms. Meenu and Mr. Amrit Pal Singh (international executives of Artemis Hospital) and told them how long it would take for us to receive all of these tests in Canada. For an MRI, the average wait time is a month to a year depending on what the reason is, and for other tests it can range from 3 weeks to 4 months as well. All together, to have all of the tests completed that we did today, it would take a year or more to be fully prepared for this treatment. We love our country, but receiving medical care so quickly here is almost a shock for us.

After Mum's PFT (Pulmonary Function Test, to see how strong her lungs are) we headed to the cafeteria for lunch, where they had a Subway and various other Indian food shops, as well as a Costa Coffee. One thing we've learned is that cream does not exist in India. We asked Lis if cream is sold anywhere in India, and she responded with "what, face cream?" LOL, good thing Mum is okay with taking her coffee black.

After lunch Mum had a CT scan done to check the function of her kidneys. She drank two litres of water within 10 minutes, I never knew she could drink so fast.

We then went to meet Dr. Sumit Singh, the head of neurology at Artemis. His office was littered with various diplomas and awards. He evaluated my Mom and discussed her history of MS, her limitations and disabilities, and then discussed what he thought a probable outcome might be for her. He said that for memory impairment it is likely that the HSCT will prevent further decline, but that improvement from her current status is questionable. He said he can provide a more thorough explanation of the prognosis of this treatment and the potential outcome once Mom has an MRI done.

Tomorrow she is scheduled for an MRI of her brain and spinal cord, a CT scan, as well as our meeting with Dr. Gaurav Kharya, the Doctor overseeing the HSCT program at Artemis Hospital.

On a side note, the traffic here is nuts! I've never heard so many horns honk at once in my life. And there are just as many rickshaws as there are cars and scooters.

By the end of the day we were tired right out from all of the information we absorbed, but we are looking forward to meeting Dr. Kharya tomorrow.

 Mum waiting outside the room for her kidney function test, she had just finished drinking her second litre of water.

This is Lis Wiberg, sitting chatting with an Indian man we met in the cafeteria.

Meeting Lis Wiberg - Day 3

Today Mum and I woke up at around 3 AM and stayed awake all day. The time difference is so big here that we can't usually sleep for more than 5 hours. This was our third day in India.

We had some brunch, and then got ready to meet with the international case manager of Artemis Hospital, Lis Wiberg, as well as the fellow patients who will be undergoing the same treatment.

We met everyone in the bar of the hotel. The fellow patients are very lovely people. There are patients here from Australia, Scotland, and Holland I believe. It was so nice meeting everyone, as they understood what it takes to get into this procedure and how MS can affect you. Everyone in the room understood MS, HSCT, and why we're all here. It was a heart warming moment.

MS isn't typically a disease that you can see, or one that many people are aware of. It's difficult for people to understand the brain fog, confusion, difficulty walking, and the host of other strange symptoms MS causes. Even  myself, at times, have had difficulty truly understanding the fatigue and confusion my Mom has felt.

Few understand the urgency that MS patients feel when it comes to receiving treatment. For many their future is uncertain, changing on a day-to-day basis. As we discussed in our meeting today, MS patients can't help but go to bed wondering, "will I be able to walk tomorrow?"

We are all so happy and grateful to be here in India, able to receive this treatment.

Lis Wiberg is wonderful. She's a danish angel. She is so kind and does her best to explain everything to us and answer any of our questions and concerns, and she is funny too. She keeps the mood light and maintains the view that there is no use in being negative, and every time someone does not speak well words of the facility, she works even harder to improve and perfect the standard of care at Artemis. In my opinion, she really takes all of the feedback towards Artemis and tries to make the most of it.

 She explained the pre-testing schedule that we will follow over the next 4 days. Mom will have an MRI, an ECG, PFT, and meet with a dietician to determine what type of food she should eat during treatment.

Lis explained that there will also be a psychologist visiting us while we're in the hospital to help with any anxiety, frustrations, home sickness, and worries that the patients may feel (she may have said psychiatrist and I am remembering incorrectly).

During the pre-testing days we are scheduled to meet with Dr. Gaurav Kharya, the head of Oncology and BMT, and Dr. Sumit Singh, the director of Neurology.

To those who are not that familiar with HSCT protocol, one celebrates their "second birthday" on the first day of transplant - the day they receive their stem cells back to re-program and remove the memory of MS from the body. This is considered a brand new version of the person, and is celebrated as being "born again" in a sense with a brand-new immune system.

During treatment, my Mom will have two birthdays - her stem cell birthday, and her actual birthday. Funnily enough, another patient here has the same birthday as her, March 1st!

After chatting with everyone we returned to our room to have some dinner, and promptly headed to bed as socializing tends to tire Mom out very quickly from the MS.

Tomorrow we being Pre-testing day 1 at Artemis. We can't wait to meet the doctors!

Since we are coming from Southern Ontario and don't see much sun around this time of year, we are loving every minute of the hot sun coming through the hotel window. It's so nice to wake up to actual direct sunlight!

Our journey to New Delhi

Well, we arrived in New Delhi at about 2:00 AM on February 3rd, 2017.

Our total flight time was between 20-22 hours, with a one hour layover in London, UK.

British Airways was lovely. The food wasn't too bad. However, neither of us slept on the way here. Our first night we slept 14 hours.

Things I've learned in our first 24 hours here:

1. They drive on the left side of the road here.
2. Research which type of plug converter you need. It is difficult finding one in a different country.
3. Jet lag sucks.
4. Indians are very nice!
5. There are security men everywhere in the airport with guns. Big guns, and I don't mean muscles. This is a little alarming when you're a Canadian never having seen a gun before.

We had dinner in the restaurant downstairs - most of the food was Indian, which I am a fan of. My Mom however, will take some time to adjust to the spices (LOL).

Tomorrow we meet with Lis Wiberg, the case manager for HSCT patients at Artemis Hospital.

For now, it's some more sleep and some Netflix.

Mom and I on the plane to New Delhi. As you can see, we were a bit tired, especially Mum :)

How it all started

I wrote a paper in grade 9 titled "How Stem Cells Impact my Life". It was for a contest held by Partners in Research. The goal was to write a paper about a new medical advancement that would impact your life. I wrote about how stem cells would one day help my Mom and Nini (grandmother) with their autoimmune illnesses - rheumatoid arthritis, lupus, and ulcerative colitis.

Little did I know, stem cells would have a much, much, larger impact on my life.

My Mom and I are travelling to India on February 2nd, 2017, to have her receive a Hematapoietic Stem Cell Transplant (HSCT). I will be her medical attendant for the journey.

For those who aren't sure what the procedure is all about, there's a separate post explaining it in more depth here: http://www.hsctstopsms.com/how-hsct-works/

Basically, the patient has their immune system "reset" by the therapy, removing the 'memory' of MS from the cells.

It starts with prepping the body for the transplant, "stem cell mobilization". In this stage your stem cells are mobilized into your blood stream.

Once your body is ready, they take your blood out and put it through a machine that separates the stem cells floating in your blood from the rest of it, and then the blood flows back into you.

After this, you are given chemotherapy, which is meant to destroy, or "ablate" your immune system up to 90%. After receiving ATG or another agent to further eliminate rogue T-cells (other bits of your immune system), your stem cells are transplanted back into your body. This helps you recover from the chemotherapy and reduces the risk of mortality from the treatment, to begin re-building your immune system.

After monitoring your system to ensure 'engraftment' has taken place and your immune system is being re-built, you're released from the facility and spend the following year building your immune system back up.

Multiple sclerosis is an auto-immune disease where your body's immune cells attack the protective covering on the nerves in your brain and spinal cord, causing the signals between neurons to be inable to communicate with neurons around them.

When your immune system is wiped out and is "re-programmed" to work properly by the stem cells, your body has a chance to attempt to reduce the damage incurred by the previous immune system.

Here are some articles I've attached that discuss the procedure of various HSCT trials and their successes:
http://www.healthline.com/health-news/stem-cell-transplants-first-ms-treatment-reverses-disability-012215
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/


It is important to note that while this treatment does not always work 100% of the time, your chance of recovering from MS is greater the lower your EDSS score is. EDSS stands for Expanded Disability Status Scale, and is used for determining how disabled someone is with MS.

The scale goes from 0 to 10, 0 being no neurological impairment, and 10 being death. My Mom is currently at a 3.0, but has been worsening by the month over the last year. Her type of MS is RRMS, Relapsing-Remitting Multiple Sclerosis. She has relapses where she sometimes cannot leave her bed, cannot do anything independently, and loses most of her ability to speak. When she recovers from these relapses, she never fully recovers to what she was before.

When none of the standard MS medications were working for her (they didn't slow progression of the disease), we looked into other options. When we discovered HSCT, we attempted to have my Mom take part in a clinical study ran by Dr. Mark Freedman in Ottawa, Ontario, Canada. We were told that my Mom was not disabled enough for the treatment (despite it being widely recognized in the medical field that it is extremely important to have it done early in the disease) and that she had not exhausted her medical options. All of the previous treatments had made her too ill to leave bed due to vomiting, or did not work at all. This was her only hope at returning to normal life.

We found an online community full of information, various Facebook groups, and lots of support.

Believe it or not, most neurologists do not recognize HSCT as a reliable form of treatment or therapy for MS patients. Canada has the highest rate of MS in the world, yet they continually deny the success of the therapy. They believe it is "too high risk, too unpredictable, and won't recommend it" to the majority of their patients.

I was told by a medical researcher that "HSCT is a treatment that is too high risk, we do not know what stem cells will do to the body. You're putting something foreign into your body and we have no idea what it will do. We don't know if stem cells cause cancer, or if you could die from it".

Personally, I thought this was rather ironic of this researcher to say, as if the expensive lab-produced medicines were not risky foreign substances with unknown effects. With extreme side effects such as nausea, vomiting, and even rare brain diseases forming, many MS patients find these treatments intollerable. Many people decline even faster after going off of an MS medication that did not work for them.

My Mom has always been a risk-taker. The mortality rate of HSCT is around 1% with the current protocol - they have lessened the extremity of the chemotherapy given, making it non-myeloblative rather than myeloblative.

In her own words, she "would rather die trying, than die not trying".

This may sound extreme to some, but when you've lost your career, cannot brush your own hair anymore, can barely speak or walk, and start to forget your own age & your daughter's birth date - HSCT seems like a pretty good deal.

India, here we come!