This Weekend is the one that we had been hoping for the last
9+ years.
This Weekend is the one we had figuratively circled on our
calendar for the past 6 months.
This Weekend is the one that we had literally circled on our
calendar for the past 6 weeks.
This Weekend, Jamil was flying from Uganda to Turkey and Turkey
to Dallas.
This Weekend, I was flying from OKC to DFW.
This Weekend, I was going to greet Jamil as he came out of
the door from Customs and Immigration in DFW.
This Weekend, we were going to fly from DFW to OKC to be reunited
with family and friends, like we did in August of 2014.
This Weekend is the one that I talked about with Jamil, on
the phone, the middle of last week about what to expect, to pack and what to
plan for.
Before I get to This Weekend, let me talk about the past.
Let me remind you about our son, Jamil Wanswabe Gregston. He was born, Wanswabe Jamil, on
October 17th, 2001 in Uganda. His unwed mother abandoned him with her
family and his maternal uncle raised him as a son. He was born to a Muslim father
that passed away, in a traffic accident, not long after we had met Jamil.
We met Jamil in February of 2012. Our family was in Uganda
on a 5 month medical mission trip when an evangelist, Jonathan Kabanda, told us
of a 10 year old boy that had a special medical need. He arranged for Jamil to
come meet us when we were working in Jinja, Uganda. Our family had been working
a long day and went to Two Friends Restaurant in Jinja, where Jamil and his
older cousin were supposed to meet us. They were delayed with Mutatu travel and
traffic. We had already ordered our food (US food like pizza, French fries etc).
When Jamil and his cousin arrived, we had our food and had just started eating.
At the direction of our Ugandan team, we ordered our new friends “Ugandan food”,
like whole fried Tilapia and a stew. While we were waiting on their food, Jamil
started to “share” our food and ate quite a large amount of pizza and French fries.
When his food arrived, we marveled at how he finished that off too and worried
that he might be sick all night. It had gotten to be late so we got Jamil and
his cousin a room at the hotel that we were staying in. We literally had to show
them how to flip on the light switch and to flush a toilet. The next morning,
we said our goodbyes and made a plan to try to help Jamil navigate the Ugandan
health system for a horrible tumor behind his eye. A month or so later we had
seen the eye doctor and he had surgery at Mulago hospital to remove the tumor.
This treatment was made possible by some generous Due Unto Donors. Jamil, at 10
years old, had not started school due to this tumor and the site of his eye made
the locals think he was cursed. After his surgery, we helped him enroll in
school.
When we returned to Uganda in 2013, Jamil's tumor had returned, so we got him back in with the eye doctor. He
had another operation and then radiation. The radiation was supposed to take 6
weeks (he and his uncle were required to stay at the hospital) but it took 10
weeks because the machine worked intermittently.
When we went to Uganda in 2014, Jill and I had been praying
that if his tumor had returned again, that we might be able to bring him to the
USA for further treatment. At this time, we were thinking it was one pesky tumor
that we could not get rid of in Uganda. That summer, in Uganda, was a long ordeal
that was chronicled extensively in our blogs. We were able to get temporary
custody of Jamil in Uganda, and miraculously, he was able to get a visitor’s
visa to come to the USA. Jamil and I flew back to OKC in August of 2014. Jamil
had a 6 month visitor visa. We had him see an ophthalmologist in Edmond. He had
another CT scan of his brain and then an MRI. It was determined that the “eye
tumor” extended back through his skull and into his brain. We were devastated as
what we thought would be a surgery and return home, turned into what sounded like a
death sentence. He had already had radiation and now had an aggressively
growing brain tumor.
Through further investigation, and an expert doctor at OU
Children’s Hospital, Jamil was found to have a congenital condition known as Neurofibromatosis
Type 2. In the USA, patients with the sub-type that he had, had a life expectancy
of 25 years of age. There was not treatment, no chemo, just watching the tumors
and praying that they stop growing and removing ones that we could. The plan
was to repeat the MRI scans at 3 months.
Jamil stayed with us from August of 2014 until May of 2015. Yes,
he outstayed his visa by a few months. His MRI at 3 months showed that the
tumor had not grown. We got another set of MRIs 3 months after that, and no
growth. His tumor growth had stopped for now. We had tried to get permanent
residency for Jamil, in the USA, but were denied. We went back to Uganda, with
Jamil, in May of 2015. We got him started in a boarding school there and he excelled.
His health remained stable for multiple years, with no tumor growth. We found a great neurosurgeon in
Uganda (Dr. Peter) that I could communicate with via email and he monitored Jamil closely.
In 2022, Jamil started to have some “passing out” spells at school. In their description,
I think that these spells were seizures. He was seen by Dr. Peter and it was
found that his tumor had started to grow and that he had multiple tumors in
other locations of his brain.
In January of 2023, Jamil had a brain surgery, performed by
Dr. Peter, to remove one of the growing tumors. This helped with some headaches
and the seizures did not return. Jamil had close follow ups and many MRIs after that surgery in January of 2023. Each time, it would be noted that the tumors
were enlarging and he had started to develop some extra fluid in his brain
(hydrocephalus).
After Jamil turned 18 in October of 2019, he was determined
to return to the USA for a visit. He no longer needed a guardian to travel.
COVID shot some big holes in this plan for several years. In early 2024, we
started to talk about this possibility again. I was convinced that he would not
get a visa because we had overstayed his visa last time, trying to get his
health situation sorted out. When he applied in the late spring, they told him
that the next visa appointment at the US embassy in Uganda was in December of
2024. He got on a waiting list, and was persistently calling the embassy to see
if there were any cancellations. We wrote a letter of support for him and
described what he would do in the USA, when he would come and when he would go
home. He ended up getting an interview in July and much to our amazement, he
got a visa where he can come and go to the USA for 2 years in August.
Since Jamil had very little travel experience (one trip with me leading him
around the airports), we started to look for a time that someone from Uganda
was coming to the USA that he could travel with. We finally got our guy, Mark,
a lab tech that worked in the medical center that we worked out of in Uganda.
He was coming to Dallas in October and would be traveling home 3 weeks later.
We booked Jamil’s ticket and started planning the trip.
Last week, when I talked to Jamil, he mainly wanted to see
family and go to our ranch to visit. This was his primary home when he was here
10 years ago. He had been messaging with my mom (his Nanny), and they were
already planning his birthday cake.
This Weekend I was supposed to pick up Jamil at the airport
in Dallas.
This Weekend he was going to watch his first Red River Rivalry
since he watched his Sooners beat the longhorns 31-26 in Dallas 10 years ago.
This Weekend, we had a big family birthday party planned in
Duncan on Sunday, where this pre-planned cake would be unveiled.
This Weekend, Jamil would meet his nephew Jack for the first time.
This Weekend did not happen…..because of Last Weekend.
I talked to Jamil on Wednesday 9 days ago. We planned what
he should pack. I reminded him of things that he could not carry-on the plane. We
went through the plan after he arrived in DFW and where I would meet him. We
planned how we would communicate through WhatsApp. We signed off with the plan
to talk a few more times leading up to This Weekend. Jamil complained to me
about some headaches but this was not new for him. He had seen Dr. Peter
earlier in the week to review some recent MRIs and was given a “fit to fly”
letter to come to the USA.
Last Weekend – Jill and I drove to Kansas City last Friday to spend the weekend with family and friends and go to the Chiefs game on Monday night. As we arrived in KC, at Jill’s cousin’s home, I noticed a missed call from Uganda. That was a bit odd because it was from a number that I did not recognize and it was about 1:00am in Uganda at the time. Before I could think it through too much, I got a text from Dr. Martin, our main Africa Renewal contact in Uganda. I called him back and he informed me that Jamil had contracted malaria while he was visiting his home village a couple weeks before. He had gotten pretty sick with it and our team from Uganda went to Pallisa to pick him up. Jamil was given IV fluids and malaria medications in Wentz Medical Center. He had started to improve. Jamil had told me none of this. He had discussed with Dr. Peter and Peter thought Jamil was ok.
Last Weekend, on Friday am, Jamil complained of worsening headaches and he as taken back to Wentz Medical Center for treatment.
Last Weekend, through the day on Friday, Jamil slipped into a coma.
Last Weekend ruined This Weekend as Jamil passed away, late
in the evening of October 4th, Last Weekend.
Last Weekend our hearts were broken.
Last Weekend, Jamil went to heaven and no longer has headaches,
trouble hearing, seizures, or Neurofibromatosis Type 2.
Last Weekend, Jamil was blessed with a quick and minimally
painful passing. He was staring down the barrel of a daunting medical journey
as his tumors progressed over the remainder of time that he had on earth. This
was gloriously expedited for him.
Last Weekend, I felt that pain of not getting him here
sooner so that we could see him again, but I also had the relief that this sudden
passing did not happen on the airplane or in the USA. The logistics of either
of these would have been complicated.
This Weekend, we are still heartbroken that we have lost
Jamil. He was a son, a brother, a grandson, an uncle and a cousin in our
family.
This Weekend, we remember the kind hearted, good humored young
man that he was. He was dealt a raw deal in his life in many ways, but
especially medically. He navigated this admirably and we had talked before
about how his facial deformity, from the original tumor, had given him an opportunity
to talk to other people with difficult medical or personal situations.
This Weekend, we are hoping our Sooners win one for Jamil.
This Weekend, we are still having the family birthday party for
Jamil on Sunday. He was in Oklahoma to celebrate his 13th birthday,
and we are going to celebrate his 23rd!
This Weekend, we plan to go to an African Restaurant and
gorge ourselves on whole fried tilapia and fries to remember the day we met
Jamil.
This Weekend, I finally got the inspiration to write this
blog.
This Weekend, I am proud that Jamil called me Dad and took my last name, but a little disappointed that I probably never told him that.
This Weekend, we are comforted knowing that we will see a
healthy Jamil again someday and that likely, some of his family, including my
Granny and Aunt Marsha, greeted him in heaven and have already celebrated his
re-birthday.
Next Weekend, Jamil would have been 23.
Jamil Wanswabe Gregston October 17, 2001-October 4th, 2024.
