Janet's HSCT Journey: A Recap of the Last few Days

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 😉)