To the memory of my oldest son Kareem Marcellas Jones who passed away in May 2013 at the age of 36. Kareem had Sickle Cell Disease along with renal failure. Below is my story...
On May 15th, Kareem was released from the hospital after having a very very intense different type of pain crisis. We picked him up from the hospital and brought him home. We had dinner and he went to bed but all night his behavior was different. He seemed disoriented and uncomfortable. He spoke of how painful this crisis was and how different from the others in past, I told him to try to get some rest.
The next day he complained that his body was sore, I suggested he get into the hot tub and soak. He seemed somewhat disoriented, however he was responding to me, so I started the water running in the tub and he proceeded to get in. I told him I would go downstairs to get him a change of clothes. While coming up the stairs I heard noises in the bathroom like banging against the tub. When I went in the bathroom Kareem was having a seizure. I tried to bring him out of it but was unsuccessful. Kareem then collapsed in my arms. Frantic, I ran to the phone and called 911. The operator told me to get him flat on his back and begin pressing on his chest to get him to breathe. I was emotional and hysterical at the same time and unsure of what I was doing. The fire department arrived within minutes and worked on him fiercely and relentlessly for about 20 minutes but, unfortunately, could not revive him.
Kareem died on May 16th. I went crazy and still do at times. The diagnosis was a blood clot to the lung /pulmonary embolism. His death was unexpected it was almost surreal and I can't even begin to express what it feels like to have your child die in your arms. I know he suffered quite a bit for most of his 36 years because I saw the pain in his eyes. He was so tired of fighting the good fight.
My son could only go to the at San Francisco General Hospital Sickle Cell clinic on Mondays between 8:00am - 1:00pm, that was the only time it was open. The clinic has moved now to another building and is still only open on Mondays between 1:00pm and 5:00pm. This is not even a Sickle Cell Clinic, it's more of a pain clinic. Consequently, if he was sick any other day of the week he had to go to emergency and hope there was someone on staff that know something about Sickle Cell Disease, now I ask you "what kind of healthcare is that?" He is at rest now.
"This is an experience I relive almost everyday. I always worried and wonder what would become of him after I passed on; never the other way around. His death has changed my perception of life and my approach to death. I pray for parents who have children with SCD, that they never have to experience this. However, for those of you that have, I say..."
"STAND STRONG YOU ARE NOT ALONE"
Miles Dewey Davis III was an American jazz trumpeter, bandleader, and composer. He is among the most influential and acclaimed figures in the history of jazz and 20th century music.
Legendary jazz musician Miles Davis suffered from sickle cell anemia. He was reportedly plagued by bad health, including diabetes, hip problems related to sickle cell anemia and two bouts of drug addictions.