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A Battle Against A Rare Cancer:Appeal for Funds
This is copied from my friends wall Dr Ekanem and his Idara Ekannem whose son battled against rare cancer .The situation is better now but they still need all the financial support they can get.
Here's the story in pictures
*AKANIMO EKANEM - a battle against a rare cancer.*
Thank you Guys for this opportunity to share the story of my brave 10-year old son as he battles a very rare cancer. Honestly, it's been a life-changing experience for me and my family. *I did question God at first but I quickly moved from shock to focus and I told God that if He brought this my way, then it meant He believed I could handle it.* I just asked for His support with every decision I had to make. It's going to be a long story but I'd try to give some important highlights of the journey so far.
Saturday, October 21:
I sat in the stands in Adamasingba Stadium, Ibadan cheering my son as he played 2 full soccer matches against other teams - he is a member of the Oyo State Junior Soccer Team. I recall he wasn't in the mood to play but we encouraged him thinking he was just being "lazy". After the games, the entire family went for a pizza and ice cream treat. All seemed well.
Monday, 23rd October:
I leave early for Lagos to earn my daily living. Akanimo returns from school complaining of "stomach pain". As a doctor, I suspect the common "stomach bugs" and recommend some home remedies. Pain continues steadily despite these remedies.
Thursday, 26th October:
My son wakes up and says he isn't going to school! Who? My brilliant, school-loving son? I encourage an otherwise hesitant Mum to take him to the Staff Clinic at the teaching hospital in Ibadan. The doctor recommends an ultrasound scan of the abdomen. *And boom!!!* I receive a call in Lagos from a colleague in Ibadan telling me my son has an abdominal tumour, likely a cancer! Imagine the shock and disbelief.
Friday, 27th October:
My family arrive in Lagos early in the morning. Further scans including an abdominal CT scan show even more! My colleagues are depressed and the gloom in the air very palpable. They don't know how to tell me their findings. But they manage to do so. I'm still confused but can't show my wife. I play down the story a bit as I inform my wife of what's going on. Our son is admitted and planned for a biopsy. Note that he has not been able to pass stools. for at least 1 week before pain started.
Saturday, 28th October: Biopsy done.
Sunday, 29th October: wife and kids return to Ibadan. Son still quite ill.
Tuesday, 31st October: Son sees a Paediatric Surgeon in Ibadan.
Wednesday, 1st November:
Son is admitted in Ibadan teaching hospital (the beginning of a long journey of inpatient care which continues till this day). I receive a call with this info and I clear my desk immediately and inform my colleagues and other staff I'd be away.
Thursday, 2nd November:
I arrive Ibadan early morning.
Akanimo was getting more and more ill. The doctors in Ibadan were ready to give Akanimo the very best they could offer. They waited for the pathology results from Lagos to determine the next step of treatment. Preliminary tests suggested from Lagos suggested 3 different possible diagnoses. A decision was then made to take Akanimo for a surgery. The subsequent pathology report suggested two altogether different diagnoses. Nobody was sure what it was! The Lagos Lab (thankfully) sent a sample to South Africa and they clinched the diagnosis - *Desmoplastic Small Round Cell Tumour* - (we eventually confirmed later in Houston). Akanimo was deteriorating despite 2 surgeries in 8 days in Ibadan. *With a diagnosis from SA so rare and never been made in Ibadan (and possibly the whole country)*, I decided to seek better help for my son. Several mails were sent seeking treatment options abroad. At this point, he didn't have an international passport, let alone a visa! *He got his International Passport and Visa being moved around on his sick bed!* I'd spare us the details of these for now.
We left Nigeria on Sunday, November 19. Three major worries and a heavy burden for me were:
1) Akanimo was very ill. There was the vivid fear and uncertainty of his ability to survive a 12-hour flight from Lagos to Atlanta (and a connecting flight to Houston).
2) The diagnosis is so grim and the chances of survival so slim. Was it worth the try, the risk?
3) The financial burden was so enormous. No insurance. No back up. I'd be in debt for life maybe.
But Guys, *I was determined to give my son the best fighting chance possible!* I took the bull by the horn and we were set to leave the shores of our country for an uncertain sojourn. _(His in-flight experience is one major story we would tell soon too)_. We came to *MD Anderson Cancer Center* (one of only two hospitals in the US and the whole world with vast experience in the management of DSRCT) and that has been the best decision we have ever made. My son is alive today thanks to the amazing and conscientious team of professionals and caregivers here at the hospital. *They are to me the very best in the world! Humane, patient, loving, passionate and most importantly, awesome team players.* Lots have happened since the day we arrived till this day!
*With the confusing diagnoses back home, they were ready in Ibadan to commence chemotherapy for the "most possible diagnosis" but I resisted it. My wife and the doctors may have thought I was crazy but I wanted my son to have the right treatment.* Truth was time wasn't on his side. It turns out that was a magnificent decision because I am sure my son would not have survived if they started the treatment back home without the much needed supportive care.
His response to the first two chemo sessions were so scary and his life was in serious danger. The managing team called us for a grave talk a few days after his first chemo saying they weren't sure he would pull through. They had to intubate him. His tummy got bigger and the tumour grew even larger.
To cut the long story short, he pulled through! Trust me, the doctors worked hard to get that degree of success. By later that same day, my son was playing video games with a tube down his throat! A miracle indeed.
Interestingly, we got an even worse scare with the second course of chemotherapy. His doctors had never seen that sort of response to chemo before. This time, his heart, kidneys and lungs failed! The doctors called us to tell us he may not survive through that day! *There is a more detailed narrative of this account recently shared by my Wife on Facebook. This incidence was in the wee hours of the morning of December 10, 2017! A Sunday to Remember!* God did it! My son survived it!
Since then, his treatment protocol has been unique! *I'm almost convinced nobody else has ever had a treatment protocol for DSRCT as my son has received in their 13 or so years of actively managing this condition with approximately 200 thereabouts cases in their wealth of experience.* Our son battles on!
Akanimo had 4 surgeries in a space of 9 days! The first lasted about 12 hours and the last about 8 hours! He completed the 6th course of chemotherapy yesterday - 3 before surgery and 3 after surgery.
Nobody knows the cause of this tumour. The doctor told us two things when we arrived here: 1) we shouldn't blame ourselves because there is nothing we did that caused this cancer. 2) the cancer wasn't there 6 months earlier! Meaning it is a fast and aggressive tumour. Remember from onset of abdominal pains to ultrasound showing a tumour for my son was only *3 days!*
It has been more devastating for me being a doctor. It's unimaginable seeing your son so ill and dying abd there is nothing you can do about it. You can predict the next sad thing that could or would happen. It's been dificult.
I think that I have stayed strong so far because I had to rely more on faith than on medicine. With the stories about this cancer, my son stands no chance. But I believe God and I've handed all over to Him. So it's more of *faith* and a decision to stay strong for my ailing son, my distraught but amazingly brave wife and my dear daughter who has been a bit neglected in all of this. Moreso, this arduous task of playing the tough guy and acting like I "have it all together" is constantly being challenged and threatened by the enormous medical bills accruing as his treatment progresses. It's been 5 long months since his admission and *the last time I received a bill it had exceeded 1.34 million dollars!* This is so scary but very true and I'm even more scared to ask for an updated bill. I only thank God for a wonderful healthcare system which thinks life first and would do all they could *to save that one life first!*
Overall, I have
all the reasons to be grateful to the Almighty. Akanimo is alive today
and really doing well. His response to treatment is remarkable. We still
have a long way to go regarding his treatment but we can thankfully say
there are baby steps in the right and positive direction. *We keep
faith!*
I seize this opportunity to thank all my friends, family, colleagues and well-wishers who have been there for us so far. In fact, hitherto strangers have also turned up as significant fortresses as we face this battle head on. My family and I really appreciate your financial, emotional and spiritual support. The race is still on. Akanimo must beat this cancer. I've never been more convinced about anything in my life. Our son is a warrior, brave and strong. He's been through an unimaginable lot and the pains now are quite tough to bear. But he knows he will be fine soon. Please keep us in your hearts - we really still need massive support. God bless you all richly. *It shall surely end in praise! AMEN!*
Sunday Ekanem
(Culled from Sunny Ekanem Facebook Wall)
+2348065684547
+19799227311 (WhatsApp active when not in the US)
sunneyjr07@gmail.com
GoFundMe: https://www.gofundme.com/akanimo-ekanem
For those who will prefer assisting directly, kindly find below Sunny's account numbers:
Sunday Ekanem
2025889886
UBA
Alternatively,
Sunday Ekanem
0042637881
GTB
Thank you
Here's the story in pictures
*AKANIMO EKANEM - a battle against a rare cancer.*
Thank you Guys for this opportunity to share the story of my brave 10-year old son as he battles a very rare cancer. Honestly, it's been a life-changing experience for me and my family. *I did question God at first but I quickly moved from shock to focus and I told God that if He brought this my way, then it meant He believed I could handle it.* I just asked for His support with every decision I had to make. It's going to be a long story but I'd try to give some important highlights of the journey so far.
Saturday, October 21:
I sat in the stands in Adamasingba Stadium, Ibadan cheering my son as he played 2 full soccer matches against other teams - he is a member of the Oyo State Junior Soccer Team. I recall he wasn't in the mood to play but we encouraged him thinking he was just being "lazy". After the games, the entire family went for a pizza and ice cream treat. All seemed well.
Monday, 23rd October:
I leave early for Lagos to earn my daily living. Akanimo returns from school complaining of "stomach pain". As a doctor, I suspect the common "stomach bugs" and recommend some home remedies. Pain continues steadily despite these remedies.
Thursday, 26th October:
My son wakes up and says he isn't going to school! Who? My brilliant, school-loving son? I encourage an otherwise hesitant Mum to take him to the Staff Clinic at the teaching hospital in Ibadan. The doctor recommends an ultrasound scan of the abdomen. *And boom!!!* I receive a call in Lagos from a colleague in Ibadan telling me my son has an abdominal tumour, likely a cancer! Imagine the shock and disbelief.
Friday, 27th October:
My family arrive in Lagos early in the morning. Further scans including an abdominal CT scan show even more! My colleagues are depressed and the gloom in the air very palpable. They don't know how to tell me their findings. But they manage to do so. I'm still confused but can't show my wife. I play down the story a bit as I inform my wife of what's going on. Our son is admitted and planned for a biopsy. Note that he has not been able to pass stools. for at least 1 week before pain started.
Saturday, 28th October: Biopsy done.
Sunday, 29th October: wife and kids return to Ibadan. Son still quite ill.
Tuesday, 31st October: Son sees a Paediatric Surgeon in Ibadan.
Wednesday, 1st November:
Son is admitted in Ibadan teaching hospital (the beginning of a long journey of inpatient care which continues till this day). I receive a call with this info and I clear my desk immediately and inform my colleagues and other staff I'd be away.
Thursday, 2nd November:
I arrive Ibadan early morning.
Akanimo was getting more and more ill. The doctors in Ibadan were ready to give Akanimo the very best they could offer. They waited for the pathology results from Lagos to determine the next step of treatment. Preliminary tests suggested from Lagos suggested 3 different possible diagnoses. A decision was then made to take Akanimo for a surgery. The subsequent pathology report suggested two altogether different diagnoses. Nobody was sure what it was! The Lagos Lab (thankfully) sent a sample to South Africa and they clinched the diagnosis - *Desmoplastic Small Round Cell Tumour* - (we eventually confirmed later in Houston). Akanimo was deteriorating despite 2 surgeries in 8 days in Ibadan. *With a diagnosis from SA so rare and never been made in Ibadan (and possibly the whole country)*, I decided to seek better help for my son. Several mails were sent seeking treatment options abroad. At this point, he didn't have an international passport, let alone a visa! *He got his International Passport and Visa being moved around on his sick bed!* I'd spare us the details of these for now.
We left Nigeria on Sunday, November 19. Three major worries and a heavy burden for me were:
1) Akanimo was very ill. There was the vivid fear and uncertainty of his ability to survive a 12-hour flight from Lagos to Atlanta (and a connecting flight to Houston).
2) The diagnosis is so grim and the chances of survival so slim. Was it worth the try, the risk?
3) The financial burden was so enormous. No insurance. No back up. I'd be in debt for life maybe.
But Guys, *I was determined to give my son the best fighting chance possible!* I took the bull by the horn and we were set to leave the shores of our country for an uncertain sojourn. _(His in-flight experience is one major story we would tell soon too)_. We came to *MD Anderson Cancer Center* (one of only two hospitals in the US and the whole world with vast experience in the management of DSRCT) and that has been the best decision we have ever made. My son is alive today thanks to the amazing and conscientious team of professionals and caregivers here at the hospital. *They are to me the very best in the world! Humane, patient, loving, passionate and most importantly, awesome team players.* Lots have happened since the day we arrived till this day!
*With the confusing diagnoses back home, they were ready in Ibadan to commence chemotherapy for the "most possible diagnosis" but I resisted it. My wife and the doctors may have thought I was crazy but I wanted my son to have the right treatment.* Truth was time wasn't on his side. It turns out that was a magnificent decision because I am sure my son would not have survived if they started the treatment back home without the much needed supportive care.
His response to the first two chemo sessions were so scary and his life was in serious danger. The managing team called us for a grave talk a few days after his first chemo saying they weren't sure he would pull through. They had to intubate him. His tummy got bigger and the tumour grew even larger.
To cut the long story short, he pulled through! Trust me, the doctors worked hard to get that degree of success. By later that same day, my son was playing video games with a tube down his throat! A miracle indeed.
Interestingly, we got an even worse scare with the second course of chemotherapy. His doctors had never seen that sort of response to chemo before. This time, his heart, kidneys and lungs failed! The doctors called us to tell us he may not survive through that day! *There is a more detailed narrative of this account recently shared by my Wife on Facebook. This incidence was in the wee hours of the morning of December 10, 2017! A Sunday to Remember!* God did it! My son survived it!
Since then, his treatment protocol has been unique! *I'm almost convinced nobody else has ever had a treatment protocol for DSRCT as my son has received in their 13 or so years of actively managing this condition with approximately 200 thereabouts cases in their wealth of experience.* Our son battles on!
Akanimo had 4 surgeries in a space of 9 days! The first lasted about 12 hours and the last about 8 hours! He completed the 6th course of chemotherapy yesterday - 3 before surgery and 3 after surgery.
Nobody knows the cause of this tumour. The doctor told us two things when we arrived here: 1) we shouldn't blame ourselves because there is nothing we did that caused this cancer. 2) the cancer wasn't there 6 months earlier! Meaning it is a fast and aggressive tumour. Remember from onset of abdominal pains to ultrasound showing a tumour for my son was only *3 days!*
It has been more devastating for me being a doctor. It's unimaginable seeing your son so ill and dying abd there is nothing you can do about it. You can predict the next sad thing that could or would happen. It's been dificult.
I think that I have stayed strong so far because I had to rely more on faith than on medicine. With the stories about this cancer, my son stands no chance. But I believe God and I've handed all over to Him. So it's more of *faith* and a decision to stay strong for my ailing son, my distraught but amazingly brave wife and my dear daughter who has been a bit neglected in all of this. Moreso, this arduous task of playing the tough guy and acting like I "have it all together" is constantly being challenged and threatened by the enormous medical bills accruing as his treatment progresses. It's been 5 long months since his admission and *the last time I received a bill it had exceeded 1.34 million dollars!* This is so scary but very true and I'm even more scared to ask for an updated bill. I only thank God for a wonderful healthcare system which thinks life first and would do all they could *to save that one life first!*
I seize this opportunity to thank all my friends, family, colleagues and well-wishers who have been there for us so far. In fact, hitherto strangers have also turned up as significant fortresses as we face this battle head on. My family and I really appreciate your financial, emotional and spiritual support. The race is still on. Akanimo must beat this cancer. I've never been more convinced about anything in my life. Our son is a warrior, brave and strong. He's been through an unimaginable lot and the pains now are quite tough to bear. But he knows he will be fine soon. Please keep us in your hearts - we really still need massive support. God bless you all richly. *It shall surely end in praise! AMEN!*
Sunday Ekanem
(Culled from Sunny Ekanem Facebook Wall)
+2348065684547
+19799227311 (WhatsApp active when not in the US)
sunneyjr07@gmail.com
GoFundMe: https://www.gofundme.com/akanimo-ekanem
For those who will prefer assisting directly, kindly find below Sunny's account numbers:
Sunday Ekanem
2025889886
UBA
Alternatively,
Sunday Ekanem
0042637881
GTB
Thank you
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