His Blessing Over the last few months, I have wrestled with when I should write this testimony of our journey with GOD on the healing of our son. I have been waiting to see how he progresses with the recent transplant. Essentially, seeking clarity before I pen down the testimony. My procrastination is really my lack of faith; I wanted to be certain that John is medically healed before penning the testimony. I wasn’t following the example of when Abram changed his name to Abraham before the promise of children happened. And GOD’s message through Pastor Jeff on Sunday, December 13, highlighted the need for Clarity may actually be lack of Trust. So, here it is..... As I write this testimony, John is at National Institute of Health (NIH) in Maryland due to complications from the transplant. He has developed antibodies that is destroying his blood, also referred to as Evans Syndrome. In the last 5 weeks, he has received about 13 blood transfusions, and his hemoglobin and platelet #s remain very low. He is pretty lethargic and had to endure two painful bone marrow biopsies. Needless to say, this doesn’t appear to be the right time, in human eyes, to be writing the testimony of John’s healing. But we know GOD already answered of prayers to heal of sickle cell disease, notwithstanding his current challenge. Nearly 23 years ago, John was born at the Cedar Sinai Medical Center in Los Angeles. It was such a joyous occasion. So, when Vivien got a call few days later to advise that John was born with Sickle Cell (SS) anemia, we were devastated. I was particularly aware of the challenges that SS children faced – the terrible pain and sickling crises, the low energy levels because of persistent anemia, and the short life expectancy to name a few. And this was a disease with no known cure. However, on getting the news, I had the peace that GOD is on the throne and that His name will be glorified in John’s healing! Based on the available science and treatment, I clearly did not know how he will be cured medically even though scientific advances were being made to help SS children to manage the disease and have a better quality of life on this side of eternity.
His Glory Our first experience with the disease was a pain crisis when John was about 9-months old in Guam in the Pacific Islands. At that age when he couldn’t talk, we could not figure out why he was screaming. While sickle-cell disease is not familiar to the medical community in Guam, John’s pediatrician was able to handle the situation. This was the beginning of regular / frequent hospital stays for John. It is so difficult for a parent to see their kid suffer and not be able to do anything about it. And while we knew that GOD loved John more than we could ever love him, Vivien and I struggled with how He would allow such an “innocent” kid go through so much pain. I recall one pain crisis that occurred while I was away playing golf with some church and business buddies; Vivien called to advise that she was rushing John to the hospital. As you can imagine, I was devastated. In my hurried drive to the hospital, I prayed to GOD and I got the image of Abraham laying Isaac on the altar. A new peace came over me – that I am laying John on the altar because he actually belongs to GOD. GOD is the Jehovah Jireh, and that I am letting go as John is best in GOD’s hand, not mine. This Abraham/Isaac revelation changed my outlook: the battle is the LORD’s; it isn’t by power or might but by His Spirit; GOD loves John more than we can ever love him; and GOD is not oblivious to the pain that John is going through. While it remained very painful to see our son suffering, we increasingly learned to trust GOD.
Our GOD is on the Throne – Healing of John Adigun Another incident that comes to mind was when John had was admitted to the hospital to handle another SS crisis. A few days later when the pain levels were manageable with oral medication, he was discharged. But shortly after we got home John’s situation deteriorated, and we were back at the hospital. That evening, some folks from our church visited us and we spent the evening singing praise and worship songs. By the next morning, John was doing better, and he was discharged. As we were leaving, the family that was next door to John’s room thanked us for the worship songs from the previous night, saying that it really ministered to them. We realized that GOD sent us back to the hospital to minister to this family. John’s illness and frequent hospital admissions (5 to 8 times per year for 7-10 days) took a toll on the family. Since these episodes are not predicable, Vivien and I could not spend “us” time away from the kids for an extended period; Daniel missed parental attention when John was ill; Vivien sacrificed her career to stay home and care for; and I had to prioritize John’s medical care over lucrative career opportunities. Needless to say, the excruciating pain that John had to endure, and how much it disrupted his critical formative years. But through it all, GOD gave us peace and joy in our home. And GOD blessed John with courage, personality, temperament and loyal friends to handle the disease. Some years were better than others, but we had a “revolving door” to the pediatric inpatient section of the hospitals in the cities that we lived. The nurses knew us and hospitably welcomed John back when he was going through a crisis. With medical advancement, new drugs became available that helped to reduce the frequency of episodes. For a few years, John had fewer episodes, and his studies improved and his participation in church youth activities increased. This period gave us a glimpse of “normal.”
His Healing But sometime in 2014, the frequency of episodes and hospitalization increased. By the time we moved to Houston in 2015, John was in the hospital with excruciating pain about 7 to 8 times per year and the tenure of hospital stay was averaging 10 to 14 days. This impacted John’s studies, though he managed to graduate high school on time in 2017. However, his situation was not sustainable, and we prayed and sought GOD’s face for wisdom. As John transitioned from pediatric to adult care, his new hematologist suggested that we should explore some of the new clinical trials that are being kicked off. This was really GOD’s grace because research to cure Sickle Cell disease has historically been limited - it is a disease that mainly affects black people, and there is limited business or economic incentive for research in this area. However, by mid 2017, there were a handful of studies on Sickle Cell disease at National Institute of Health (NIH) and some universities. Vivien and I started to explore NIH clinical trials and identified the ones related to Sickle Cell disease, but we were unable to contact the Research Coordinator. Separately and “coincidentally,” a distant relative of Vivien was chatting with a church friend at the school parking lot while they were waiting to pick up their kids. The discussion somehow drifted to my son, John. Her friend asked a lot of question about my son’s medical situation and she was surprised about his level of interest. He then explained that he is involved in research at NIH and he could put us in contact with the Research Coordinator for the Sickle Cell clinical trials. Our GOD clearly orchestrated this engagement! Within a few months, John was assessed to qualify for 2 of the ongoing trials. By the time we finished with the paperwork, one of the trials (related to gene therapy) was closed but he was admitted to the second trial (haplo bone marrow stem cell transplant).
Our GOD is on the Throne – Healing of John Adigun In parallel with this review with NIH, we explored the bone marrow transplant trial at MD Anderson Cancer center in Houston. The MD Anderson assessment did not go well and the estimated cost of a transplant outside a clinical trial was >$1 million. So, we pursued the NIH option – they were further along in the ongoing trials; preliminary results were promising; there was no cost for participating in the trial; and will provide free accommodation, cover travel costs and provide stipend for meals! Indeed, our GOD is the Jehovah Jireh. At the NIH assessment phase in November 2019, the doctors were amazed at John’s health – he still had his spleen; he had not had a stroke; and his kidney, liver and heart were in good shape. A doctor commented that John is the healthiest Sickle Cell patient he has ever seen. Hallelujah! Vivien was determined to be the better donor, and NIH was able to harvest the required stem cells from her bone marrow in one sitting! She did have a lot bleeding after the procedure and had to spend the night at the hospital. Otherwise, it was a remarkable bone marrow harvest. The transplant took place on February 28, 2020, and all the #s during the following weeks were all trending in the right direction. There were none of the hiccups that sometimes happen with transplantation, and we were able to return to Houston with John in June 2020. Since the transplant, John has had no sickling/pain crisis! His subsequent 6-month review confirmed that the transplant was grafting well, and his blood counts are comparable to a healthy adult. Wow! Our GOD is good and faithful. GOD delivered John’s healing as He promised 22 years earlier! In closing, GOD blessed us with a wonderful son, John. Even though he was born with Sickle Cell anemia, GOD, the Jehovah Jireh, provided for John’s health. He provided doctors, finances, peace and joy all through the years. While for many years, there was no cure for John’s situation, GOD finally created options and orchestrated circumstances to get John included in one of the clinical trials at no costs. Indeed, our GOD is still in the healing business and He remains on the throne. He is faithful and He delivers on His word and promises. GOD is worthy of our praise!