A Recap of the Last few Days - Day 14

A lot has happened in the last few days. A lot of mixed emotions, some boredom here and there, and some bouts of homesickness (for myself at least, Mom handles being away from home very well).

We found a way to finally connect the laptop to the TV, luckily I brought an HDMI cable. We've been watching some shows on Netflix and trying to keep occupied. Mom's had her CGSF injections daily, along with some other things to prevent viral or fungal infection.

Mom and I have learned of a new phenomenon - "sitz baths". When we were first told that Mom would need to take these "sitz baths" we thought okay, no problem. Baths are no big deal.

Sitz baths are not what you'd think. It's a small basin, a big bowl rather, that you have to bathe your derrière in. Not fun. But apparently it's to prevent potential infection. 

There was some confusion from the nurses regarding Mom's other autoimmune illness, ulcerative colitis. She took some laxatives not knowing what they were, and ended up very fatigued from the issues it caused her. This was quickly cleared up with the doctor and now everyone is informed of her condition.

In regards to her diet, we've spoken to multiple people about her dietary needs, such as a severe intolerance to dairy (again, from the colitis) and to kidney beans. Alas, at each meal there is a cup of yogurt, some cheese, and a glass of milk.

Mom's been eating a lot of toast to try and recover from the accidental dose of laxatives. We've met with the head dietician and the other staff of Dr. Gaurav, and hopefully this will all be cleared up soon. The food here is good, but it will take some adjusting to suit Mom's dietary requirements while also trying to maintain the neutropenic diet. We realize it isn't easy, so we are trying our best to be patient while she enjoys her multiple pieces of toast. 

Besides all of that, Mom is feeling rather well. 

The internet unexpectedly blocked any social media site including the blog last night, so it's been difficult to get the next post up. It has since been fixed, and hopefully there are no more issues. We are just grateful to have WiFi so we can share all of this with you!

I'm continuing to add things to my list of recommendations and tips for those who come to Artemis later in the year. Another important note I should add, is that I recommend you bring a good quantity of conditioner and body wash. There is shampoo and bars of soap provided here, but if you're picky about your conditioner then be sure to bring some.

I asked Ms. Meenu about whether or not it would be possible to have a table and chair added to our room, as both Mom and I's backs hurt from sitting on a couch/bed all day. It would make doing my school work a lot easier as well, and Mom misses eating at a table. They were able to bring in a nice desk and chair for us, and a nurse was able to ask for a small fridge for our room. With a tiny ice cube tray, Mom can now have some ice cubes in her water, which helps her drink more. If you let the management here know about your concerns, they do their best to try to accommodate you. So far our only issue has been the diet containing too much dairy, but that opinion will likely change when her food comes later today.

A new doctor has joined Dr. Kharya's team. Unfortunately I do not remember his name, however he is very nice and made Mom and I both feel more comfortable because he had a better understanding of her colitis. The more knowledge involved in this operation the better! We are glad he has joined.

A psychologist came to visit Mom to evaluate her mental state and see if there was anything she needed to talk to someone about. She was deemed to be in good mental health, so he will only be coming on a requested basis. A physiotherapist has also visited us and discussed where Mom's issues are, such as balance and walking. She is going to come for half hour visits and work with Mom on strength training so that she can develop better balance.

Mom's test results were returned to us yesterday. It's nice being able to keep them so that in the future we can compare her current state to how she was prior to treatment. It's also interesting to actually SEE the MS, as the lesions on her brain and spine.

There are a few more days of CGSF injections for Mom, to get her stem cell count up. Once they're high enough they can harvest them and begin the chemo to ablate her immune system. See ya MS! (Hopefully. Although Mom is pretty optimistic 😉)

 This is one of her MRI's. You can see the small white patches in the middle of her brain, on the three images in the middle row.

Another MRI showing some lesions as cloudy looking white areas.

Naps, naps, and more naps!

CGSF and Documentaries - Day 11

Today Mom had her injection of CGSF, cell-growth stimulating factor. This stimulates her bone marrow to produce more stem cells and release them into her blood stream. Dr. Kharya explained that typically only 2-3% of a person's blood consists of stem cells, but before they harvest them they try to get them up to around 30% at least.

They give her the CGSF as an injection, in two spots on her stomach. She's feeling pretty good other than some fatigue and a fever here and there. As usual she is monitored very closely to  make sure her fluids are high enough and that her temperature is fine.

We were supposed to be moved into the new BMT ward today, however they need to re-fumigate and make sure the ward is entirely clean before we go in. So it will be another 5-6 days until we are moved. Better safe than sorry. We are happy with our current room anyway, although I have requested a table and chair so that Mom can sit at the table to eat and I can sit to do my homework. It's tough eating on a couch or bed.

We watched a documentary today on Netflix about the Amanda Knox case. Pretty interesting stuff.

Other than resting and trying to stay hydrated, not much happened today. Mom's spirits are up despite the fatigue.

Stem Cell Mobilisation - Day 10

Today Mom started treatment with cyclophosphamide, some mesna (to prevent damage from the chemo on her bladder), and lots of fluids.

She felt pretty tired after the chemo treatment, but otherwise she was relatively well. She had a minor fever, but that is common during HSCT treatment. They check her temperature often and make sure she is taking in, as well as outputting, a lot of fluid.

She didn't have much of an appetite and she received some hot milk with her lunch, which was the final tipping point. After that she made sure the dietician was well aware that she did not want her milk served to her hot. It hasn't been served hot since. When you're in a bed 24/7 and you don't get much of a food choice, hot milk is enough to send you over the edge.

We headed to bed early around 8 PM, and it's a good thing we did because every 20 minutes a nurse had to come in and reset the IV machine she's using. Mom didn't get much sleep because of the interruptions and the light needing to be on, but hopefully tomorrow will be a better night.

Mom has noted how well the nurses here are able to insert an IV. When she was undergoing her MRI testing she noticed how painless the IV was, and again today when she needed one for fluids and chemo. She's had many IV's in her life because of her health problems, so she knows her fair share of those experiences. I should mention that she also has colitis (without a flare-up in 4 years), rheumatoid arthritis, and she has been investigated for lupus several times throughout her life. HSCT has been studied in treating these health conditions as well, so maybe this procedure will also help with those.

I read an article from a medical journal today that discussed the psychological impact of HSCT. I'm aiming to try and better understand how I can be there for my Mom, and what I might expect from her in terms of change in mindset during and after treatment. The article focused on "the psychological impact of the transplant on quality of life including: physical, psychological, social, and spiritual for the patient and caregiver, and to discuss the nurse’s emotional labor of caring and compassion fatigue for such an intense vulnerable population." Mom's first day of treatment proved to be an example of how it effects both her and I. I have to admit, it is tough watching her in her weak moments. She is doing very well right now, but today when she was too exhausted to wash her hair on her own, I could tell she felt slightly disheartened at the reminder that she has lost some of her independence. After everything she has done for me, I'm honored to be there for her. Some of my blog posts may sound a little depressing, but I'm trying to be as honest and truthful about what the patient as well as the attendant go through during treatment. There are no blogs written from the attendant's perspective that I know of, so I hope this will be useful to both groups of people.

This afternoon Lis stopped in for a visit. She brightens the day with her funny jokes.

Tomorrow we are supposed to be moved to the new BMT ward. Overall, things are pretty decent and tomorrow Mom will receive the CGSF (cell-growth stimulating factor) to help her stem cells grow and move into her blood stream for harvesting. She's eating lots of bananas for potassium!

Passing the Time - Day 8 + 9

Passing the Time

The past few days Mom and I have just been settling into our room and watching some TV. Dr. Kharya confirmed that she will start treatment tomorrow (February 12), and on Monday we will be moved down to the 5th floor into the new ward designed for HSCT patients.

Mom finished the entire season of Stranger Things. She's excited for the second season already.

Today I spent the afternoon working on my linguistics homework, as I'm currently in university pursuing a bachelors in Cognitive Science. My professor agreed to let me do my homework while in India and e-mail it to her, so that I don't have to quit the course. Afterwards I spent some time doing mandala artwork, a small hobby of mine. Dr. Kharya and his team noticed them during his visit and said they were very nice. They are all so kind.
Every day Dr. Kharya and his team come in to see how Mom is doing. They check her weight and blood pressure, her temperature, and remind her to drink enough water. So far it seems that they've started her on a neutropenic diet with only cooked foods, so as to minimize any risks. She's happy with the food though, as am I.

Questions and Answers

I decided that I'm going to make a list of tips and suggestions for anyone who is travelling to India for HSCT. There a few things that would be helpful to know, but you don't think of them until you've been through the experience, like how important it is to get the Dukoral vaccine. I learned that the hard way.


For almost every meat option there is a vegetarian one, as a lot of people in India are vegetarian. It's nice having that option. I had some biryani rice, some steamed veggies, and some fresh cut fruit for lunch, and Mom had some chicken with a tomato sauce on it, rice, and steamed vegetables. I should mention that the menu here has indian food available as well as continental - so those who are not a huge fan of spice or indian flavour are accommodated for.

I've had a few people message me with some questions that I'll address in this post. For clothing, the hospital has Mom wear hospital clothes. They are quite nice. They give you pants and a kimono-style shirt to wear. As for myself, they requested that the attendant bring 100% cotton clothing (at least 2 outfits) so that they can autoclave them and make sure they are sterile each time they need to be washed. They need to be cotton to withstand the rigorous cleaning process. I found some long shirts and leggings and I just keep some plastic flats on.

As for getting to the hospital and hotel, the hospital arranges to have someone pick you up from the airport and bring you to the hotel, as well as a driver to bring you to and from the hospital when needed. At the end of treatment, someone from the hospital drives you to the airport to catch your plane. There is no need for taxi money unless you decide to venture off on your own during the pre-testing days, but they typically take all day so there isn't much time.

There is a foreign currency exchange on the ground floor of the hospital, although I haven't used it myself so I don't know the specifics of what currency they exchange. I know they can exchange USD and INR though. Apparently you cannot bring rupees out of the country, so Mom and I have just been using our Visa card and it works fine.

Mom and I were discussing today how frustrating it is that neurologists in north america are so reluctant to support HSCT. I read an article today outlining some of the reasons why certain MS drugs are put to market while others aren't - for example, Rituximab. Rituximab is a drug used for treating MS off-label, but the company that manufactures the drug (and owns the patent), is currently fighting to remove the right for Doctors in the US to prescribe Rituximab off-label (using it for MS is off-label). They have created a new drug very similar to Rituximab called Ocrelizumab. The patent for Rituximab will run out in a short while, which might be why Ocrelizumab is being put to market instead. However, Ocrelizumab has a far worse profile of side-effects and complications. But there is no money to be made in Rituximab once the patient runs up - so the money goes elsewhere. Of course none of this is to be outright admitted, but it is quite obvious what they are doing.

It is a shame that this treatment is unavailable in Canada despite all of the research that shows it's benefit for MS patients. Neurologists argue that "there are many good disease-modifying drugs currently available to MS patients, while HSCT is unproven", however most of the drugs fail to work in slowing disease progression and it is well documented that they lower the patient's quality of life (nevermind emptying their wallet).

My Mom was told it would be unethical to treat her with HSCT by the neurologists in Canada. What's unethical is watching someone deteriorate when there is something to be done about it.

Anyway, no point in worrying about the negatives when we have so many positives to look forward to in the future!

Tomorrow at 6 AM Mom will be given her IV and administered some cyclophosphamide to begin treatment. The day has finally come!

 Some of the art I did today to pass the time.

 This is the room Mom and I are staying in until Monday. There's a bathroom but it isn't visible in this photo.

 The fresh cut fruit I had at lunch, with some hot water in the thermos so I can make some tea or instant coffee.

 This is the bowl of fruit that gets brought to our room, along with the water bottles we're provided.

Here is some pasta I had the other day for lunch!

Our First Night in Artemis Hospital - Day 7

Today Mom and I went to Artemis Hospital around 1 PM to be admitted. We were put on the 6th floor, I'm not sure if we will be moved to the 5th floor which is newly renovated. Either way, we are just happy to be here.

Ms. Meenu had plug converters brought to our room so that we could plug in our devices. There's a TV in the room with cable, although 90% of the channels are only in hindi. That's okay though, we managed to find a few channels with english movies. 

The room is pretty big. We have a washroom with a shower in it and a closet to keep our luggage in. There's a HEPA filter to keep the air clean, and cleaners come in a few times a day to mop the floor and clean the bathroom. Our bed sheets are changed everyday, and there's a futon couch with a pull-out bed in it for me to sleep on. Mom is staying in a standard hospital bed. 

The food here is very good. Our first night here Mom was given veggie soup, chicken with gravy, and some arabiatta pasta, with her choice of either tea or coffee (or what ever other beverage she'd prefer). 1 Litre water bottles are placed in our room every day for us to drink. If we'd like anything else we just have to dial the extension for the F&B Supervisor (food and beverage). 

They sent an IT person to come set up our devices on the WiFi. The internet isn't too bad in the evenings, although it is a bit slow during the day and not great for streaming. However if you download what you would like to watch during the evening, you can play it during the day without depending on the internet, so it works just fine that way. I should also mention that the TV has an HDMI port, so you can connect your laptop to the TV.

The dietician came to meet with Mom and assess her diet. So far she says there are no restrictions on her diet, but that may change once treatment starts, for example during neutropenia (the presence of abnormally few neutrophils in the blood, leading to increased susceptibility to infection). 

Our first night here many people visited us to make sure we were okay with our room and to see if we needed anything. They were adamant that if we needed anything to just give them a call and they'd fix it right away, and pointed out our phone beside the bed with a list of all the extensions of the various services we'd need (food and beverage 24/7, dietician, house keeping, etc.)

There is a fresh fruit bowl put in our room every day, with bananas, apples, oranges, and grapes, and all of the meals are brought to your room. A person comes to visit us each day to ask what we'd like for breakfast, lunch, and dinner. They have instant coffee here with powder creamer, so Mom's pretty excited about that.

Our hospital door is lockable with a deadbolt, although there is a security guard right outside of our door watching the elevator, so we don't feel too worried. There are also security guards at the elevators on the ground level, so that only permitted guests have access to the upper hospital floors.

The nurses are very sweet. They come check Mom's vitals every morning and ask if there's anything we need.

Please pardon my boring tone during this blog post, I'm still having a tough time sleeping at night and it's beginning to affect my ability to write clearly. I'll post some pictures a bit later.

All in all, Mom is glad to be here and everything is going well, other than a few minor mishaps (they always bring steamed milk for our cereal instead of cold, which we find very odd, but they are happy to fix it when we point it out). 

In the next few days she will start treatment with some cyclophosphamide. 

The Results - Day 6

Every day Mom and I feel better and better about Artemis Hospital's HSCT program. However I am not sleeping well at all. Trying to adjust to a 10 time zone switch is no easy task, and I'm beginning to feel nauseated, irritable, and confused most of the day from the lack of sleep. I hope this goes away soon, as I'm fairly certain I'll wake up in the middle of the night and be sick soon enough.

Today we again went to the hospital in the morning with Lis. We started the day off with meeting Dr. Sumit Singh to discuss the results of all the tests Mom had done.

Her heart, lungs, and blood work all came back fine (although he could tell from her lungs that she was a smoker). He showed us various MRI images of her brain and spinal cord, and pointed out where her lesions were. For the first time, Mom and I could put a face to the name of the lesions on her brain. Until that point we had never seen any of her MRI's and didn't really know what her lesions looked like. I told him we were happy to hear anything he could elaborate on.
He explained that the lesions started out smaller, and that they've grown to become little patches of lesions that are more advanced and have created axonal damage, which will be harder to recover from. He also said that her left visual pathway is damaged, as the visual field image test revealed that her left eye does not communicate well with her brain, due to a lesion somewhere between the retina and the area of her brain responsible for processing images.

He noted that there are some lesions on her spinal cord, but they are more so in her brain. In regards to her memory and cognitive impairment, he said that the lesions are in areas of the brain required for critical thinking and memory, and that is why her memory is so poor. Overall, he said her brain has noticeable atrophy - that means that her brain has began to shrink over time to be smaller than what it should be for her age, due to the MS.

Dr. Singh's final comment was that due to the advanced stage of the MS, the prognosis is only to hope that we can stop the disease. He said any further improvement or reversal of damage will be considered a nice bonus. We already knew this, but of course, one always hopes for more. It would be wonderful if some of her brain fog could lift.

We get to keep all of the test results and MRI images, as well as the notes that Dr. Singh took on Mom's status and condition, which is nice because we can look back on how she was before treatment and compare it to her condition post-HSCT. They are all written in English. I should note, most everyone here speaks english and there are few communication problems, especially in the hospital.

Despite being told that Mom's MS was advanced and that her brain has began to shrink, she held onto her positive attitude, and never forgets how lucky she is to be here receiving HSCT. She's glad we were able to come now, as her EDSS score was increasing by roughly 1.0 point every year.

After meeting with Dr. Singh, all of us headed upstairs to meet with Dr. Kharya once more. He confirmed that we will all be admitted to the hospital tomorrow, but that only 2-3 patients' treatment will be started per day, as he does not want 6 of them being harvested at the same time. It takes 4-5 hours to take the blood out and filter it to collect enough stem cells, and then 3-4 hours to cryo-preserve them. Linda joked, "you don't want to run out of freezer space by having us harvest all in one day!" haha.

We headed back to the hotel and had some dinner in the restaurant. Mom wasn't sure what to order, so she tried some chicken biryani. She requested that it be milder in spice, however this is India and biryani is a dish full of spices, so that wasn't very easy. She struggled with the heat of it, but she never complains and tries her best to simply enjoy the new experiences and tastes.

We spent the rest of our evening checking out the pool deck on the roof of the hotel, laying in the sun (myself mostly, as the sun makes Mom feel like she's "on fire", another side effect of the MS). We talked about the results of her tests and I listened to Mom tell me about what life is like with MS. I always want to know what she feels like, and even though she's told me many times before, I know that few want to hear about the difficulties MS leaves one with. It is a struggle that many internalize and do not speak out about, because truth be told, most people simply don't want to hear it. She needs a listening ear now more than ever.

We headed down to our room once the sun began to set, and had a video call with Dad. He's amazed to hear what India is like. I don't think he could handle it here, as the food is too spicy, there is no Tim Hortons, and Dad is very peculiar about his routines. Nevertheless, he supports us from afar.

We ended the night with a few episodes of "Stranger Things" on Netflix. Mom likes it so far.

Tomorrow, the journey with HSCT begins at Artemis, when we are admitted around 1 PM.

Here we go!

 Mom and her chicken biryani!

The area where we sat in the sun on the roof.

Meeting Dr. Gaurav Kharya - Day 5

Our day began at 10 AM with a taxi bringing us to Artemis Hospital. We wrapped up some pre-testing by having Mom do an MRI, a CT scan, and a full neurology exam.

I should mention that all of the tests are done very promptly with care taken to ensure we are comfortable at all times.

Ms. Meena and her assistant helps guide us and the assistant pushing Mom around the hospital. It's a huge facility. There are probably more doctors in this one hospital than there are in the entire province of Ontario!

After all of the testing was done we headed to the cafeteria. I had some vegetarian biryani and some type of tofu gravy thing (I told the young man working to give me whatever he recommended). I love trying the food here and trying to take in as much of the culture as I can.

Mom is having a hard time adjusting to the fact that there is no such thing as coffee here - not the type of coffee she drinks anyway. When anyone from outside North America visits Canada, they quickly learn that 'regular coffee' does not indicate espresso, cappucino, or latte. Vice versa, Canadians quickly learn that 'regular coffee' does not mean a large cup of weak coffee, it means espresso.

Having been a barista myself I figured the best I could find for Mom was an Americano, a cup of watered down espresso. It wasn't her favourite, but it will do.

After lunch with some of the fellow HSCT patients, we all headed upstairs to meet with Dr. Gaurav Kharya, the head of oncology and the Doctor who will oversee the HSCT patients and the protocol we will follow.

Dr. Kharya is a very approachable Doctor who appears quite confident in his work. He explained the exact protocol of treatment we will follow, and whilst doing so he explained other facilities' protocol and why he advises the one that we will use, citing various medical literature that he's researched.

He answered all of our questions regarding Rituximab (another immune suppressing agent used in other facilities), and explained why previous patients encountered certain problems in their treatment. Nothing was left off limits and we were able to ask anything and everything we were concerned about. When everyone felt satisfied in his answers, we went back to the hotel.

After meeting Dr. Kharya and getting the chance to hear his medical knowledge in first-person, Mom and I both finally felt 100% confident in our choice to go to Artemis. We had chosen the right place. There are so many people that doubt India and the protocol they follow, and up until that moment Mom and I still felt 10% unsure of how to feel. We are confident in Artemis Hospital's protocol and trust Dr. Kharya and his staff.

I inquired about follow-up check ins with Dr. Kharya, and he said he will be in touch with us every two weeks after treatment when we send him the blood work diagnostics from Canada.

All of the fellow patients are lovely people. I had the opportunity to take a picture of most of them, all but the one gentleman from Scotland, John. We will have to take a new one when we're all together again.

Tomorrow we are heading to the hospital in the morning to meet with a dietitian who will discuss what Mom should eat during treatment, and then we will have our final consultation with Dr. Gaurav Kharya and Dr. Sumit Singh to go over all of the test results. We are slowly starting to relax and take in our experience in India. Mom is starting to miss Tim Horton's coffee, though LOL.

From left to right, there is Peter from the Netherlands, Linda from the US, Pam from the US, then Rod from Australia, and my Mom, Janet from Canada. We were missing James from Scotland at the moment.

 Below is a panorama of the view we had from the 6th floor board room we met Dr. Kharya in.

 Mum and I out front of our hotel.

 Mum waiting for her MRI at Artemis Hospital. I convinced her to wear her hair down today in case she happens to go bald from the chemo during therapy! Enjoy it while she has it.