Day -1

Mom and I woke up feeling refreshed. She finally got a full night's sleep pretty well uninterrupted. Today was her last dose of ATG. Her rash stuck around for most of the day but didn't get any worse. She really didn't even notice she was on ATG. Her hair is beginning to fall out but she is persistent that she won't lose enough of it to need to shave it. Only time will tell.

I finally got a picture of Dr. Gaurav and his lovely team. He told us that tomorrow, March 1st, would likely be Mom's transplant day. How exciting. Some of the patients who have already had their transplant have reported that they feel some tightness in the chest and nausea, but they all agree that it wasn't too bad.

We watched a few movies in the afternoon and I wrapped up some reading. Thankfully Mom is feeling much, much better now. There isn't much else to report on, so hopefully tomorrow's transplant goes well!

Mom loves reading all of the comments you guys post on the blogs! She thanks all of you for your wonderful support.

Day -2

Today Mom had her second dose of ATG. After the vomiting she experienced yesterday, she was hoping that today would be a better day. While her stomach was more settled, she developed a minor rash, a common side effect of ATG. It looks like the nausea and vomiting was a result of the round of cyclophosphamide she did.

She spent most of the day napping on and off, and trying to get some fruit in to recover the energy she lost. Luckily they provide bananas and oranges that she can have, so as to maintain the neutropenic requirements (no fruits without peels, no lettuces, etc.).

While Mom was asleep I spent my time doing some reading from Dr. Mercola's recent book "Effortless Healing", and reading some more medical journal articles on HSCT protocol. I really admire Dr. Mercola's research and outlook on medicine and health. It's very refreshing in a world where most physicians are taught primarily the benefits of drugs and less about nutrition and healing.

Later in the day we watched The Lincoln Lawyer, and after Mom fell asleep again I put on a documentary called The Propoganda Game, an inside look at North Korea. Grim, but very truthful.

I thought I'd take the time to share some photos of the room we're in. Keep in mind that our room is smaller than most others, although we find it cozy and comfortable!
Some features:

• Triple HEPA filter in the ceiling (the corridors in this ward are also HEPA filtered)
• Basic hospital bed with an IV pole
• A small night stand with a drawer to keep some things in
• A mini fridge (this is where Mom gets her ice cubes for the water. She finds it easier to drink while it's cold)
• A comfy chair
• A pull out couch for the attendant to sleep on
• A closet to keep your luggage and whatever else in (comes with coat hangers)
• A flat screen TV that comes with cable and HDMI port (you need to pack the cable)
• The bathroom has a large shower with railings, the toilet has railings beside it (they have commodes if you need them as well as toilet seat raisers)
• A phone beside the bed to call for house keeping, food and beverage service, as well as other amenities
• A call nurse button on the wall above the bed (there is also a remote attached that is kept in the patient's bed)

I should mention that since we've been moved to the BMT ward, cleaners come in twice daily to wipe down all of the surfaces to disinfect, as well as they sweep and mop. Some of the information I provide might seem redundant or repetitive for some, but I know how helpful it is to know these small details when you are trying to prepare for your stay here.

Tomorrow is Mom's last day of ATG, and then if all is well she will be doing her stem cell transplant on March 1st, her 47th birthday. Another patient here, James, also has his birthday on the 1st of March.

Starting anti-thymocyte globulin, Day -3

Today Mom has began the ATG doses, which are given to her through IV very very slowly throughout the course of 8-10 hours. The ATG used in Mom's treatment is derived from rabbits, and is designed to further deplete her immune system by using antibodies against her T cells. A T cell, or T lymphocyte, is a type of lymphocyte (a subtype of white blood cell) that plays a central role in cell-mediated immunity. T cells can be distinguished from other lymphocytes, such as B cells and natural killer cells, by the presence of a T-cell receptor on the cell surface. By using ATG after cyclophosphamide the goal is to deplete her bone marrow as well as cells responsible for immunity, which have gone haywire and mistakenly attack her myelin sheath (this is what MS is). 


Some of the patients who are given ATG have fairly severe reactions, and it is prone to causing fevers, chills, and nausea. This is why they administer it very slowly, starting off with 5 mL per hour (the ATG is mixed in with a saline solution, so it isn't 5 mL of straight ATG), then going up to 10 mL per hour, 15 mL, etc. up to 25 mL per hour if the patient is handling the treatment okay. They check your temperature often and keep a close eye on you.
She was feeling alright all day, a little bit hot now and then but not much else. To help prevent side effects and prevent a dangerously high fever, they administer acetominophen, methylprednisone, and a few other agents such as anti-emetics (prevents nausea), and some antibiotics to prevent any infection. It wasn't until a few hours after the administration of ATG was over that she experienced any side effects. She woke up late in the evening vomiting, which could be from the chemo or the ATG. This carried on throughout the night while she attempted to get some sleep intermittently, but didn't have much luck. 
Her PICC line keeps forming a blood clot which makes it difficult for the nurses to take a blood sample in the mornings. We've been assured that her blood counts are still very good, so since her platelets are still performing as normal they apparently try to stop the blood from flowing out the PICC line. At the same time, she's been having some bleeding and IV fluid leak onto her protective bandages, which is apparently normal due to low platelets. Who knows. They apply a pressure bandage over the line and that seems to fix the leakage problem. 
I tried to get her mind off of how sick she was feeling by putting on a documentary she was interested in. It discussed how fasting plays a role in aging and auto-immune illness. There is a type of hormone in human blood that's called insulin-like growth factor 1. So far research has shown that having higher amounts of IGF-1 in your body increases your risk of having 7 different types of cancer, and one of the things that contributes to this is eating too much protein.  A study of a small population of people in Ecuador, who have much lower levels of IGF-1 (because they lack a growth hormone receptor), showed that they rarely develop cancer and other age-related conditions. They are smaller than regular people, as IGF-1 is important when growing as a child, but they live very long and have almost no history of cancer or auto-immune illness. They live similar lives to the average population -they smoke, drink, eat poorly, and don't maintain physical activity, yet they don't suffer the same diseases we do. There was another study conducted on the 5:2 diet, which involves eating 5 days of the week normally, and then eating only 500 calories for 2 days out of the week. The reason fasting is relevant is because fasting for two days by only eating 500 calories is enough to lower the amount of IGF-1 in your body by a good amount, while also lowering blood pressure, encouraging the body to use fat as energy once it's glucose stores have been used up, as well as encouraging new connections in the brain. Fasting has also been shown to slow down how quickly cells divide, providing an opportunity for cells to be repaired. 
It was interesting enough that it kept Mom's mind off of the ATG while she dozed off now and then. Here's to hoping tomorrow's ATG dose goes a little better. 

Zip-lining Across Niagara Falls, Day -4

I haven't had the chance to sit down and write up a post in the last few days. Mom has started chemo and I've been busy helping her out.

She started cyclophosphamide three days ago (chemo). Today is her fourth day. She has been handling it very well, up until today. Today she experienced a fair amount of vomiting and hot flashes, and a loss of appetite. Today was the last day of chemo, the next three days she will receive antithymocyte globulin. The staff administers anti-emetics to prevent nausea and vomiting, although today she didn't hold up well.

Yesterday we were shifted from the 6th floor to the 5th floor, into the new BMT (bone-marrow transplant) ward. It has been built to assist bone marrow transplant patients and is very new. I didn't believe we were actually moving at first, as we've been told a few times before we were going to be moved but it didn't pan out. We were told about the new ward awhile before coming here.

The new rooms are very similar to the one we had on the 6th floor. You can tell they are brand new as there are some paint marks on the furniture and some little touch ups here and there. There are a separate set of doors you walk through when on the 6th floor to get into the ward. The room we were given was a fairly large room, a bit bigger than the last one we had. Everything seemed to be going well other than having issues acquiring an IV pole for Mom to maintain mobility, up until bed time. Mom was worn right out from the chemo and was woken up at 5 AM yesterday morning, so she really wanted to get to bed. I got her all set up and turned off the lights, only to notice that it sounded like a theme park outside our door. The room wasn't set up very well in terms of keeping sound out, also keeping in mind that our door is directly in front of the nursing station's desk. Asking to keep quiet wasn't exactly an option - they tried their best, but I understand that nurses need to talk to one another, it's part of their job. An hour later a cleaner came into our room and flipped every single light on, and began cleaning. Mom was livid. Understandably so, since she was so tired out. 

I spoke to Dr. Kharya and his team today about the noise and explained that the room would not work out, and thankfully we were able to be switched to a room at the end of the hall, away from the nursing station. It's odd to me that the noise is such an issue on this floor, as our room was right outside the nursing station on the sixth floor as well, but it was never a problem. The room we moved into is about 1/3rd the size of the one we had before, so I had to sacrifice my working desk for homework. The bathroom is the same size and the room has almost exactly the same furniture in it. That is quite alright with me though, what matters is Mom's treatment and ability to get a good rest. It's more cozy this way, anyway!

So it is apparent that there are some things to be fixed on this new floor, but that is to be expected as we are the first patients to be here. The new bathrooms have better hand rails for people who need them. The new flooring doesn't like to cooperate with the IV pole wheels though. We made an attempt at using different IV poles but none of them seem to roll smoothly across the laminate yet.

A few nights ago Mom and I were sitting down watching a movie when she turned to me and randomly said, "when I get better, I want to go zip-lining at Niagara Falls." It caught me off guard as it was such a random thing to say. I asked her "where did that come from?", and she said "because I'm excited to live and be able to do things again". I teared up a bit but didn't show her. For the last few years I've asked my Mom to do different things with me, but she wasn't able to. From my high school graduation to the night of my prom, she wasn't able to participate in normal activities, and to many this was confusing. Her disease has been mostly cognitive decline, so although she is mostly physically able, she has great difficulty processing things and carrying on regular social interaction. She had to sit at the back of the room for my graduation because being in large crowds made her extremely anxious, and she was careful who she spoke to, because all too often she could not keep up with the pace of regular conversation. She would leave events early due to fatigue, and she would have to cancel on plans because she didn't feel like she could mentally process the thinking required for an activity. Knowing that my Mom is looking forward to trying things again brings me hope. Some days it feels like my Mom has gone missing, because the woman I'm speaking to can't understand what I'm saying and her brain can't form the words she wants to speak. 

For now it's some more rest and antiemetics for Mom.

Harvest Time, Day - 8

Today Mom had her stem cells harvested! They collected 1,209,000,000 stem cells, or 13 million per kg of body weight.

The day started early with some blood work and preparing to be moved to the transfusion unit of the hospital on second floor. Once we were downstairs, we had some breakfast and Mom's PICC line was set up.

A peripherally inserted central catheter was inserted on the right side of her neck. They had me leave the room for this part, and at first I didn't quite understand why, because I took precaution to make sure I didn't bring any potential bacteria in. Once I came back in I figured out why. There was a fair amount of blood on the pillow and her hospital gown, and I have to admit, I am slightly queasy at the slight of blood! So I am glad I wasn't present.

She said it wasn't painful, (as they administered local anesthetic first) but that it was uncomfortable. The funny thing is, my mom is poked at least twice daily with IV's or needles/injections, yet she has always had a relatively severe phobia of needles. I realized how far she was willing to go to treat her MS when I watched her take her first IV here like a champ, not even freaking out.

After the line was inserted, there was some vital checks and an x-ray to ensure that the line was in proper place.

Once everything was ensured, we met Dr. (Brig.) Anil Khetarpal, the director of the Blood Bank and Transfusion Medicine unit. He was a very humble and respectable Doctor. He made the procedure easy to understand, and we felt very confident in his capabilities. Naturally I'm a very curious person, so I question everything out of the sheer sake of knowing more about the world. I asked him how the apheresis machine worked, since there was a million tubes and different moving parts. He brought me over to the machine and happily explained from beginning to end how Mom's stem cells were collected. Basically there are two tubes connected to the PICC line. One takes blood out, while one puts the blood back in. The tube bringing the blood out draws it out using pumps, and then the blood is separated into different components using centrifugal force (spinning really fast). The needed components of the blood are collected into sterile bags, and the unused components are returned to the donor via the return line. It was fascinating. I really appreciated the opportunity to hear about the details of it all. His two assistant doctors stayed the entire duration of the harvest watching over the apheresis machine, explaining more of it to us.

One thing I love about Artemis is that their website has a directory of all of the doctors in their facility, their qualifications, and their title within the staff. Dr. Khetarpal's assistant physician was telling me about how he has so much experience in his field, and how he was actually a high ranking official in the Indian army at one point. Upon looking at his profile on the Artemis website, I was floored. He has over 29 years of experience in the practice and teaching of pathology in various military hospitals. Here is his profile: http://www.artemishospitals.com/about-artemis-hospital/for-patients/list-of-doctors/doctor-details?ID=14 It feels good knowing we are in very capable hands.

While I'm at it, here is the fabulous Dr. Gaurav Kharya's impressive profile as well:
http://www.artemishospitals.com/about-artemis-hospital/for-patients/list-of-doctors/doctor-details?ID=202

It only took a little bit over two hours for enough of Mom's stem cells to be collected. Typically they expect the procedure to take anywhere from 4 hours or more, but they were pleasantly surprised at how well the harvest went with Mom. She collected more than needed for transfusion, a whopping 13 million stem cells per kg of body weight.

Once harvesting was completed, they disconnected the machine and kept Mom for a few hours for monitoring. We had some lunch brought to us and then went back to our room.

Tomorrow Mom will start the cyclophosphamide (chemotherapy), and continue for 4 days when her immune system has been ablated. She will also be given ATG later in the week.

She feels really pleased with the results of her harvest, and in general feels strong still!

The final product!

On our way down to the transfusion unit, bright and early at 5:30 AM.

Mom waiting to meet the Doctors.

Getting set up.

This is Mom's PICC line all wrapped up. 

Nervous, but still smiling!

The team, including Dr. Khetarpal and his assistant physicians.

You can see the two lines that connect to Mom's PICC, one drawing blood out, one bringing it back in,

This is the apheresis machine used to separate the components in the blood. Super cool to see,

Some of the stem cells collected during the first cycle.

The final result - what we came here for!

Waiting for Harvest - Day 18

Today Dr. Kharya confirmed to Mom that her blood counts are very well, so we're looking at potentially harvesting tomorrow. Harvesting involves having a PICC line inserted (peripherally inserted central catheter) into the side of Mom's neck, with a tube that leads down into her chest.

They withdraw blood through one tube and it flows back into Mom's body through another. As the blood goes through a machine, the stem cells are collected and the rest are sent back. Dr. Rishi said it's similar to "skimming the top of milk to get cream".

After the stem cells are removed they are cryo-preserved until it's time to re-introduce them to her body. After harvesting has completed, Mom can begin the 7 days of chemotherapy to ablate her immune system. I'm a tad nervous about potential infection, but she's not worried.

Yesterday Mom experienced some moderate lower back pain. Bone pain is apparently fairly typical in GCSF injections, as it encourages the bone marrow to push the stem cells into the blood stream. Some Advil quickly helped relieve the discomfort.

Yesterday we finished watching The People vs OJ Simpson: American Crime Story, and then started watching a documentary called Cash for Kids, a story about a judge in Pennsylvania who was convicted of accepting money for sending juveniles to detention centers over minimal crime.

Mom's been spending some time getting to know the nurses here better. She likes asking them about their aspirations and why they enjoy being a nurse. There is one that is particularly sweet, shes very petite but nonetheless takes care of Mom well. There's always a smile on her face. Many of the nurses look quite young, but they've told us about how they went to school to pursue a 4-year Bachelors of Science in nursing. All in all, the staff here is very nice.

Mom is planning to head to bed early tonight, to make sure she's well rested for the day ahead, in the case that they are prepared to harvest her stem cells.

Not much else is happening, other than our typical daily routines. We're both missing home though.

Trying to locate an Indian Tim Hortons - Day 16

Mom's been doing well, she doesn't feel bothered during the daily CGSF injections. Today is day 6 of the daily cell-growth factor injections.

This upcoming week, sometime between Tuesday and Friday, Mom's stem cells will be harvested depending on her blood counts. For now we're just working on getting lots of them floating around in her blood stream.

Yesterday I went with John (an attendant of another MS patient here) to the foreign registration office. Someone from the hospital took us there and helped us get the paperwork together. Mom just has to go to their office at some point after discharge to give them her signature in front of a witness. You know, bureaucratic things. If you have a medical visa, regardless of the length, you apparently have to go register at the FRO within 2 weeks of arrival.

I came back to find Mom worried, as she had thought they had deported me because I took a few hours longer than expected, LOL. 

She finished watching a documentary called 13th, about the black lives matter movement. I caught the last few minutes, it sounded really interesting. Then we watched Forrest Gump, and then a documentary called The Internet's Own Boy, a story about a young man named Aaron Swartz who had a large role in the politics of technology but was sadly convicted of a cyber crime. It was really good. 

Our typical day consists of the nurse coming in at 6 AM to take a blood sample from Mom, and then they check her weight, temperature, and blood pressure. Yesterday I decided to check mine while she was at it, and I was surprised to find that I've lost a little over 15 pounds since leaving Canada. I can't believe that, since all I do is sit in a hospital room and eat fruit! 

After that Mom sometimes has a shower, and someone comes to clean the bathroom and floors. They change the bedsheets and give her a new hospital outfit. The doctor visits at some point during the middle of the day to make sure everything is okay, and the dietitian pops in to go over what the meal plan is for the day. A separate person comes to take my order for the day's lunch and dinner, and the following day's breakfast. 

Mom and a few others were allowed to go out for a brief while yesterday as their immune systems are not yet compromised (still within the hospital though). They had some coffee or tea in the cafeteria and chatted about each other's experiences so far. We have a group chat with all of the HSCT patients here and a few of the attendants, and boy are they funny. They keep the mood light with humour and it's nice to have a small community where you understand what one another are going through.

A physiotherapist has worked out a plan for Mom. She plans to visit her for a half hour to an hour per day to do some strength exercises to help her balance. She noted how Mom is still relatively strong. Many of the doctors and assessments here have noted that Mom is in a good position to be receiving HSCT. A lot of MS patients are required to do a wash-out period if they've been on MS medications, which can hinder their possibility of treatment. Mom refused to take MS medications as they made her extremely sick and were crazy expensive, and while people thought she was nuts for refusing MS medication at the time, her resistance to accept what she was handed has proved extremely beneficial. She was also diagnosed with MS a relatively short while ago in comparison to most HSCT patients, and generally has no other health complications.

What some people aren't always aware of, is that some times when you go off of an MS medication you can have a relapse in response to the withdrawal. This is what happened to Mom. She had to stop taking Aubagio because her neurologist deemed it ineffective in stopping her disease progression. She went off of the medication and soon found herself barely able to walk, and she could no longer comb her hair or have a shower on her own. She didn't want this happening again. In her own words, she knew that she was declining by not being on medication - but the likelihood of being taken off of another MS medication was high, and she couldn't stand the idea of declining even more rapidly once being taken off of it. She was determined to receive HSCT, and she did so.

Mom is so excited at the idea that if she sees improvement from HSCT she might be able to go back to work one day. She's told me before that if she's doing well in the next few years, she would love to pay it forward and help other people who are fundraising for HSCT. She knows how important this is for MS patients, and she is forever grateful for everyone's help in getting her here.

The other day we were discussing how she really misses her Tim Hortons coffee every day (I know, she talks about Tim Hortons a lot, it's a life-long love of hers). I thought, well it doesn't hurt to try finding it. So I googled "Tim Hortons New Delhi", and was excited to find the address of a Tim Hortons in Delhi. I said "MOM! There's a Tim Hortons in India!" and she said "REALLY?" I double checked the address only to find that the address was in fact, for a Tim Hortons located in Delhi, Ontario (pronounced DELL-hye), not New Delhi, India. She quickly retreated to her state of longing for her favourite coffee. She knew coming here that she would likely be without Tim Hortons, but she's already requested that when my Dad comes to pick us up at the Toronto airport, that he have a coffee in hand for her, haha! I swear if there was a Guinness Book of World Records for the most-consumed Tim Hortons in one lifetime, my parents would win it hands-down. No joke, they typically drink 2-4 Tim Hortons coffees per day, and we are also currently missing out on Roll-Up-The-Rim! Many of the workers who are employed at the various locations in their hometown, Woodstock, Ontario, have my Dad's voice recognized immediately when he orders over the intercom. Only a few more weeks until she can be reunited with her daily large coffee with 2 cream in it.

If you have any questions about Mom's experience here in India, feel free to comment with questions and let us know what you'd like to hear more about, we can answer in the next blog post!

 Pam, Linda, two of the head nurses from Dr. Gaurav's team (I'm so sorry I haven't memorized your names!) Mom (Janet), and myself.

 People watching out the window, lots to see.

 Mom and the physiotherapist working on some length strengthening exercises.

 Receiving her CGSF injection for the day.