Stephen and Dana go to India

04/09/2025

Hi everyone.

Long time no post. I guess I feel like I don't have a lot to report. Really I do though. I have been making slow and steady progress with my physiotherapy. I have recently graduated from a wheelchair to a walker. Though I still have some fairly significant PT issue with crouching, sit to stand, anything approximatiting raising my right leg above 6 inches. I am still not leav ing the house for anything other than trips for medical reasons. There is currently a measels outbreak in Calgary to compund everything else going on. I am doing a graduated return to work. That has its good days and bad. Today was a bad day. I am pushing myself harder than I should be, so it's a struggle finding my limits and staying within them. My boss is super supportive and my co-workers are great though. Dana has been awesome. Even with navigating her own personal stuff while supporting me she has been a rock. I am planning on venturing into public in May. we will see how it goes. I will try and be regular in my updates.

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02/01/2025

Hi Everyone- Stephen here

Updating again. So my hair is growing back! I think it's a different colour. Which is no surprise. I know that my mustache definitely is. It was mostly red, now it's mostly black.

My brother Matthew drove down from Edmonton to take me to my physiotherapy appointment. I did my post transplant physical benchmark so I can compare progress vs pre transplant abilities. To see where I am at post transplant and make a plan for regaining as much function as possible. She concluded that my drop foot issues are actually from a hip muscle I have that doesn't function fully. So I can't raise my leg all the way. I have balance issues, but my vertigo is no longer a problem.

I am currently battling yet another infection which I causing me no end of problems with my day to day. When I'm sick my body doesn't work well.

Dana is back at working from home and taking care me. She loves cooking so much that we are now getting hello fresh 3 times a week. Ha ha.

01/22/2025

Hi Everyone -long post warning- Stephen here. -Edit here- regarding my return to work date.

Well, we have been home just over a month. Not a lot has changed but a lot is about to change. There's been a few things of note.

Today is day +60 since my transplant which is a significant milestone for if it was going to wrong it would have wrong by now type stuff.

My "numbers" are steadily improving.
Numbers are all the information gathered from the by weekly blood tests being done. Mostly to do immune system and blood counts but also organ function.

I'm moving and walking better. I was able to cook dinner for the wife and kid Monday night unaided for the first time. Though I was exhausted afterwards.

Dana has returned to work this week but is working from home full time so that she can support me if needed. She is going for 2 days at the office to reconnect with her team while someone stays to make sure I dont do anything rash like try to go down stairs.

Mason has been writing his finals and is as enthusiastic as can be expected of any teen about continuing with his studies next semester.

I think the two biggest pieces of news for me are that I begin my graduated return to work February1st.( I had a brain fart earlier and got my weeks mixed up! So I edited this) I have a very supportive employer and coworkers. I'm excited to go back.

The other news is on my symptom side. For anyone whos has experienced chronic pain you will understand how it affects every aspect of your life. I have experienced chronic pain for 6 years. I woke up today and for the first time in 6 years, I wasn't in pain. It was so odd a sensation I couldn't even identify the feeling at first. It was more the absence of feeling. I realized my leg didn’t feel like it was on fire. This was a gift I never dreamed of and I hope it lasts but I'll treasure it while it's here.

So those are the highlights! I'm sure missing stuff. But I'm writing a Facebook post not a book. I'll try and update after my neurologist appointment on February 3rd.

01/12/2025

Hi Everyone,

Stephen here, long time since an update and people have been wondering how I am. We have been back for just over 3 weeks. My numbers have come up slowly but steadily. I struggled with fever the first 2 weeks I was back but that seems to have cleared up as that test came up negative this time around. I am hoping to meet with my Neurologist soon regarding future treatment and have been working closely with my GP regarding care. I am much stronger than I was when we left India and I am walking a limited amount. I think my hair is even starting to grow back! I had my first visitor this week, so that was great. I also helped to prepare a meal in a limited capacity. I miss being in the kitchen and cooking so this was great for me to be able to help at all. I have been just recuperating, and doing my physiotherapy. I will keep you all posted.

12/23/2024

Hi Everyone, Stephen here. Sorry for not posting since we landed. It's been pretty hectic. I have had a fever since we landed and it has knocked me for a bit of a loop. The flight was a marathon. I went 40+ hrs without sleep. I am still amazed I did that, as it was not my intention. We did not get out of the Calgary airport until around 4pm and I was asleep by 5pm. I woke up at 10pm to take medication and eat something and went back to sleep until the morning.

We have had had a couple of friends drop by unannounced. They were great to see. But our house is currently closed to visitors until after Christmas. I am still very immuno-compromised and have some sort of illness causing a low grade fever.

So while I appreciate everyone's love and support. For my safety, please stay away. Per my Doctors direction If you have a child under 12 in your house hold this especially applies to you. Zoom is a great medium for virtual visits now.

We want to wish everyone a very Merry Christmas and a safe holiday season.

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12/19/2024

We are leaving on a jet plane! Goodbye India! You were great! The excitement and anxiousness we have had about travelling today can't be expressed. We will be travelling to Amsterdam with a layover and then on to Calgary. Arriving Friday around 1:30 hopefully! follow the flight tracker as I will keep it updated this time

https://www.flightaware.com/live/flight/KLM677

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12/16/2024

Hi Everyone, Stephen here. - Day 54 - Sorry for the lack of updates. Not a lot to report. We have been hanging out in the Gokulum Grand hotel https://gokulamgrandblr.com/ waiting to go home. Today I had my final blood draw and tomorrow, I have my final meeting with the doctor before going home. I still need to get my PICC line removed. I had anticipated them using my Picc line today for the blood draw but it was not. I guess they ran out of time on my discharge day to get it taken out and decided I would rather get out of there and come back in a week and get it taken out rather than wait around. They were 100% correct. Home soon!

Gokulam Grand Hotel & Spa, Bangalore, is a luxury hotel on BEL Road located close to Orion Mall. Book your rooms now and enjoy a restful stay.

12/10/2024

Day 48- Stephen here. We are free! Yesterday we were released from hospital in the late afternoon. It was a long morning of waiting around while the events went on in the background for my release for outpatient care. Then suddenly it felt like, person after person were coming in to talk to me about medication schedule, dietary restrictions, self care regimen, and physiotherapy exercises that I need to follow. A final visit with my Dr. to answer any questions. Then a really awkward but well intentioned photo op with the president of the hospital. He gave Dana a beautiful bouquet of flowers. Then that hurry and wait period while they got Dana and the logistics of our departure and final packing of the belongings I had in the transplant ward.

I can't express in words how great the feeling was getting wheeled out of the transplant unit and being able to hug my wife for the first time in a month. I finally got to put on my own clothes, which was awesome.

Then we were stuffed into an SUV with all our luggage and my wheelchair and whisked off to the hotel. When we arrived. There was a few hiccups at check in but we are now settled in to our room. I go back to the hospital next week for my last appointment and to get my PICC line out. We are enjoying sleeping in a comfortable bed and being with one another again. Looking forward to coming home.

12/06/2024

Day 45: Stephen here - I am feeling better each day and continue to improve on my post transplant numbers. Here is a quick catch up on me.

~ S

12/01/2024

Day 40: Hi everyone, Stephen here. Please bear with me I am using speech to text as I am not up too sitting and writing. Today is transplant plus 8. This is important for me because the transplant team has typical benchmarks on where average patients usually are. I am good in some area and worse in others but nothing atypical thankfully.

The way chemotherapy works for those who don’t know, is the drugs come first, they have certain immediate side effects, but their true effect come after. This is what I have been going through. I have been coping with issues stemming from extreme fatigue, digestion, and nausea since transplant day. I have developed mouth sores recently that makes swallowing food a painful process, I have no appetite. The chemotherapy makes my MS symptoms worse in the short term not better, so I have had to deal with those issues. The only thing that is unusual is the persistent low-grade fever that I have had for 4 days, (that is seemingly better today). I have been given broad spectrum antivirals, anti-biotics, and anti-fungals every morning and evening. As well as blood platelets, this to stay ahead of issues.

Regarding what the doctors expect to see happening at this point in the procedure. They expect me to start improving. The goal of this procedure was to wipe out my immune system and effectively reset it. The wipe out has happened. The stem cells are in. Sometime in the next 2-5 days the stem cells that were transplanted back to me will begin to “engraft” in areas of my body where bone marrow is produced. My body is starting to make all of the things critical for living, along with a reset immune system. Hopefully, I will see some relief of previously active MS symptoms but that is not guaranteed. As my immune system numbers continue to improve, I will reach a certain threshold at which point I will be considered for outpatient release and monitoring for a week. Then barring complications, we will embark on a very safety conscious and cautious few flights home.

I finally lost all of my hair but I am rocking this new look!

~ S

11/26/2024

Day 35: Dana here.

Stephen received his stem cell transplant 4 days ago. He says that after all the research, chatting with others who have gone through this procedure, and feeling as if he was prepared enough for what he was about to do. Imagining is nothing like experiencing it. He does not feel that anything could have prepared him for how difficult this truly would be.

He is doing ok, there have been a lot of ups and downs but we will cover more in posts to come.

~ D

11/21/2024

Day 30: Dana here - It is hard to believe that we have almost been here a month! As you can imagine chemotherapy has many side effects, for Stephen it seems to be lethargy, nausea, headaches, and lack of desire to eat among others. He is happy that his hair is finally falling out so that he does not have to shave it.

Tomorrow is when they transplant his stem cells back into his system. This will be considered day 0 and the "Birthday" of his transplant. This is the day he has been waiting for a very long time and the reason why we are here.

Crossing my fingers all goes well 🤞

~ D