From Mumbai with love...
7th January 2017
Our first day in Mumbai and what a hectic day it has been. India has redenominated its currency and the forex bureau in the hospital has closed. I had to pick a tuktuk (rickshaw taxi) to lokandwala market to change money, I left the hospital at about 6.30pm and stood on the road looking for a tuktuk that would go. Nobody was willing to go. I saw a nice looking young man with his son in pyjamas and no hair on his head, looked like they had just been discharged from the hospital. The gentleman realized how much I was struggling and when he got a taxi he offered me a ride. I was elated. Of course I hopped right in, and he seemed quite safe regarding his situation.
As we were in the taxi, I thanked him and smiling I watched him interact with his son. They intrigued me because it's always nice to see father/son bonding and also nice to see a father being actively part of their child's healthcare which isn't very common to see in Ghana.
Me: Is he your son?
Gentleman: yes
Me: What type does he have? ( I realized he looked like he was undergoing some form of cancer treatment, hence this question)
Gentlemen- He has cancer of the blood, leukemia.
My heart really sank when I heard this, such a handsome little boy, so full of life.
Me: I'm really sorry to hear that...you're a brave little boy you know? Not everyone can go through the treatment. You will be fine.
I finally arrived at my stop and thanked the gentleman.
And he said, don't thank me just pray for my son that he will get better soon.
It got me teary eyed but I tried at all costs to hide my sadness from them, especially the boy.
This little interaction taught me a good life lesson: everybody has their fair share of problems they go through When I feel depressed or discouraged, I always remember that people are in worse situations and although mine is also just as bad, I should always be grateful for the kind of issues I have and learn how to deal with them.
Never be down or broken because of what you're going through, always look to God in times of trouble, the truth is He will never leave us hanging. He's always there.
14th January 2017
We have had no rest since we got to Mumbai, medical review isn't easy. Redoing tests we did last year and comparing them. And then also going for physiotherapy. Giovanni has been a warrior in it all, he was cranky at the beginning I guess because of the time difference but after a week now, he has settled in just fine.
When I lament on how Gio has to suffer from seizures and being sick often and taking so much medication, I stop complaining when I see kids like this little boy who are also going through a painful battle. I suddenly become silent and stop complaining and stop lamenting and thank God for my little boy. It doesn't mean the journey is any easier, it just helps me be more grateful to the Lord.
Giovanni's journey is indeed a painful one. I'm not concerned about whether he will walk one day, that one can be handled with our fast evolving technology and to be honest more people who are wheel chair bound are able to accomplish so much these days. You see, that is the least of my one thousand and one worries: my worry is that Giovanni will be a vegetable due to his continuous severe seizures. No medication is working and very soon we will have to look at other options like the ketogenic diet which apparently only works in 30% of epilepsy cases, what makes Giovanni part of this 30%? especially when medications that should have worked on him did nothing. I worry for my boy, is he going to have seizures all his life? When will his EEG be clear for once? Is he in pain? Does he understand when I speak? Will he be able to express himself one day? Will he ever respond to any of these bloody medications one day?
This trip to India has been different from the previous one. The first one, Giovanni was 6 months old, much more difficult to travel with him but he adapted to the change very quickly. This time round, the trip hasn't been too bad either, but Giovanni has taken a whole week to adapt to his new environment, the time change and food have had quite an effect on his routine. The food is completely vegetarian for him and the time change has disturbed his sleeping and medication pattern.
But all in all, he's still my little warrior, he's still very strong and has been forcing his body to adapt. He's a real fighter for sure!
We do between 3 to 5 therapy sessions a day which include speech, physio and occupational and he's doing really well, aside the other review tests we have to do. And again all this has been possible through every single person's donations towards his treatment. Unfortunately Giovanni still doesn't quality for epilepsy surgery and I'm beginning to wonder if he ever will. His seizures are too severe and too generalized, that the doctor has recommended we do not opt for that for now. One way I'm relieved but on the other hand I'm upset for him because maybe just maybe this could have been the only way to get rid of his horrible seizures once and for all.
It has been a hectic week and we have had no rest at all. At night, Giovanni is wide awake due to the time difference and in the morning he's asleep, and when Gio sleeps, he sleeps like a log, there is no way you can wake him up.
Almost run out of treatment options for his epilepsy as several medications aren't working. He is currently taking IVIG, kindly google I can't explain, but apparently the effects will only be seen a month or two after, but there is no high chance that it would actually work. When we return home, we will be back on steroids and this means I will have to isolate Giovanni once again from sick people. Nobody with as little as a sneeze or cough can come around him, as he gets very fragile when taking steroids. That's means no functions either for him. Poor Giovanni, meanwhile he loves the outdoors but this won't be possible over a two month period.
27th January
Finally time to go back home. The trip overall was good. I wasn't disappointed at all regarding the hospital and its efficeincy. MRI scan, EEG reports, VEP report, lab tests, genetics, it's all been very professional and detailed. I thank God for my friend who led us to this hospital in the first place. The Doctor has tried her best to find a solution to Giovanni's severe seizures, so we shall follow through with the treatment she has prescribed for the next couple of months, if that also doesn't work then we need to start thinking of going for second opinion somewhere else. Unfortuntately the second opinion we went for in France was terrible, we weren't lucky and fell upon some very unqualified doctor who completely ignored us during our stay. This time we have to carefully consider where we are going, and take into consideration cost and how specialized the centre/hospital must be. My research begins... the earlier we find a solution for Giovanni the better, he just cant keep having seizures like this...
As I sat on the plane and closed my eyes, I just thanked the Lord for gow far He had brought us. Our journey continues...
Our first day in Mumbai and what a hectic day it has been. India has redenominated its currency and the forex bureau in the hospital has closed. I had to pick a tuktuk (rickshaw taxi) to lokandwala market to change money, I left the hospital at about 6.30pm and stood on the road looking for a tuktuk that would go. Nobody was willing to go. I saw a nice looking young man with his son in pyjamas and no hair on his head, looked like they had just been discharged from the hospital. The gentleman realized how much I was struggling and when he got a taxi he offered me a ride. I was elated. Of course I hopped right in, and he seemed quite safe regarding his situation.
As we were in the taxi, I thanked him and smiling I watched him interact with his son. They intrigued me because it's always nice to see father/son bonding and also nice to see a father being actively part of their child's healthcare which isn't very common to see in Ghana.
Me: Is he your son?
Gentleman: yes
Me: What type does he have? ( I realized he looked like he was undergoing some form of cancer treatment, hence this question)
Gentlemen- He has cancer of the blood, leukemia.
My heart really sank when I heard this, such a handsome little boy, so full of life.
Me: I'm really sorry to hear that...you're a brave little boy you know? Not everyone can go through the treatment. You will be fine.
I finally arrived at my stop and thanked the gentleman.
And he said, don't thank me just pray for my son that he will get better soon.
It got me teary eyed but I tried at all costs to hide my sadness from them, especially the boy.
This little interaction taught me a good life lesson: everybody has their fair share of problems they go through When I feel depressed or discouraged, I always remember that people are in worse situations and although mine is also just as bad, I should always be grateful for the kind of issues I have and learn how to deal with them.
Never be down or broken because of what you're going through, always look to God in times of trouble, the truth is He will never leave us hanging. He's always there.
14th January 2017
We have had no rest since we got to Mumbai, medical review isn't easy. Redoing tests we did last year and comparing them. And then also going for physiotherapy. Giovanni has been a warrior in it all, he was cranky at the beginning I guess because of the time difference but after a week now, he has settled in just fine.
When I lament on how Gio has to suffer from seizures and being sick often and taking so much medication, I stop complaining when I see kids like this little boy who are also going through a painful battle. I suddenly become silent and stop complaining and stop lamenting and thank God for my little boy. It doesn't mean the journey is any easier, it just helps me be more grateful to the Lord.
Giovanni's journey is indeed a painful one. I'm not concerned about whether he will walk one day, that one can be handled with our fast evolving technology and to be honest more people who are wheel chair bound are able to accomplish so much these days. You see, that is the least of my one thousand and one worries: my worry is that Giovanni will be a vegetable due to his continuous severe seizures. No medication is working and very soon we will have to look at other options like the ketogenic diet which apparently only works in 30% of epilepsy cases, what makes Giovanni part of this 30%? especially when medications that should have worked on him did nothing. I worry for my boy, is he going to have seizures all his life? When will his EEG be clear for once? Is he in pain? Does he understand when I speak? Will he be able to express himself one day? Will he ever respond to any of these bloody medications one day?
This trip to India has been different from the previous one. The first one, Giovanni was 6 months old, much more difficult to travel with him but he adapted to the change very quickly. This time round, the trip hasn't been too bad either, but Giovanni has taken a whole week to adapt to his new environment, the time change and food have had quite an effect on his routine. The food is completely vegetarian for him and the time change has disturbed his sleeping and medication pattern.
But all in all, he's still my little warrior, he's still very strong and has been forcing his body to adapt. He's a real fighter for sure!
 |
| Giovanni at physiotherapy |
It has been a hectic week and we have had no rest at all. At night, Giovanni is wide awake due to the time difference and in the morning he's asleep, and when Gio sleeps, he sleeps like a log, there is no way you can wake him up.
Almost run out of treatment options for his epilepsy as several medications aren't working. He is currently taking IVIG, kindly google I can't explain, but apparently the effects will only be seen a month or two after, but there is no high chance that it would actually work. When we return home, we will be back on steroids and this means I will have to isolate Giovanni once again from sick people. Nobody with as little as a sneeze or cough can come around him, as he gets very fragile when taking steroids. That's means no functions either for him. Poor Giovanni, meanwhile he loves the outdoors but this won't be possible over a two month period.
27th January
Finally time to go back home. The trip overall was good. I wasn't disappointed at all regarding the hospital and its efficeincy. MRI scan, EEG reports, VEP report, lab tests, genetics, it's all been very professional and detailed. I thank God for my friend who led us to this hospital in the first place. The Doctor has tried her best to find a solution to Giovanni's severe seizures, so we shall follow through with the treatment she has prescribed for the next couple of months, if that also doesn't work then we need to start thinking of going for second opinion somewhere else. Unfortuntately the second opinion we went for in France was terrible, we weren't lucky and fell upon some very unqualified doctor who completely ignored us during our stay. This time we have to carefully consider where we are going, and take into consideration cost and how specialized the centre/hospital must be. My research begins... the earlier we find a solution for Giovanni the better, he just cant keep having seizures like this...
As I sat on the plane and closed my eyes, I just thanked the Lord for gow far He had brought us. Our journey continues...
Comments
Post a Comment