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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.
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!
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