With heavy hearts, we approach boldly.

 

Have you ever noticed that some of the most important decisions in life can be painful?  Choosing to do what is the “right” thing or what we feel God wants us to do, can often be costly to us in many ways.  Our family is praying and working through one of those decisions, coming to a climax today in Uganda. 

As most of you know, Jamil has been living with us, in the USA, since late August of last year.  We have known Jamil since the spring of 2012.  I have written several blogs about Jamil, his medical problems, the reasons that we felt called to go through the ORDEAL of getting him to the USA.  Please glance back at those and understand the baseline of miraculousness (my computer tells me that this is not a word, but I’m going with it) that brings us to today.  As I blogged about his eye tumor extending into his brain back in September, I was not sure that today’s difficult decision would ever be an option.

 

Jamil has a congenital condition known as neurofibromatosis type II (NF2).  Doctors, smarter than me, have made this diagnosis since we have been in the USA.  The NF2 makes him at risk for tumors associated with his Central Nervous System.  It is the reason for the big meningioma behind his R eye.  NF2 is also the reason that he has tumors on both of his acoustic nerves (hearing nerves going to the ears).  These acoustic neuromas could cause trouble with hearing or balance if not watched carefully in the future.

 

When Jamil reached the soil in the USA, we made a mad dash to start his medical care.  We had 6 months to get him accurately diagnosed, treated (which we thought would be a surgery to remove a tumor in the eye socket), and then recovered so that we could get him back to Uganda before the 2015 school year started and before his visitor visa expired.  Quickly after starting this dash, we realized it was going to be an endurance race.  We were advised to start the legal process of getting Jamil permanent residency (a juvenile green card) so that he could stay with us for up to 10 years to receive medical treatment.  As we got the diagnosis of brain tumor, the 10 years seemed like it would be much more than we needed.  The process of getting the green card is long and expensive.  Jamil went for his final interview for this card on Wednesday of last week, as we prepared to leave on Friday.  We don’t know the results of this interview yet.  Jamil had received some travel documents that “should” allow him to travel to Uganda and then return to the USA while awaiting the ruling on the green card. 

 

Our wise doctors at the NF2 clinic at OU Children’s Hospital, advised us to watch the brain tumor for 3 months, to monitor what it was going to do.  Jamil had already received radiation and the tumor was not in a place that made it safely accessible to surgery, so watchful waiting seemed like the best plan.  In December, his MRIs showed that none of the 3 tumors listed above had changed.  Jamil was healthy, growing, and did not seem “ill” at all.  So we decided to wait again for 3 months and recheck.  In late April, his tumors were still found to be unchanged.  So here is a summary of the medical information:

-          He has 2 acoustic neuromas and one meningioma that is in his brain.

-          These tumors have been stable and without growth for 9 months.

-          He has NF2, which puts him at increased risk for future additional tumors.

-          He has received radiation while being treated in Uganda.  This does not completely preclude him from receiving radiation again, but his doctors will want to delay any radiation for as long as possible.

-          Uganda has recently gotten MRI technology, which they did not have prior to last summer.

-          We have found a hospital that was started by a neurosurgeon from the west that has agreed to follow Jamil, if he returned to Uganda.

-          Medical care for Jamil would, without debate, be better in the USA.  The degree to which the options are better in the USA is unsure.

-          We are unsure how difficult it would be to bring Jamil back to the USA at a later date if he starts back to school in Uganda.

 

Jamil is truly a joy.  He is really a good kid.  He’s funny, easy going, and sensitive.  He can get “blue” about some things, including missing his family and certain things about Uganda.  When we went to OU last month, his doctor asked him what he misses most about Uganda.  Jamil said, “My family.”  She then asked him what he would miss most about the USA, if he moved back to Uganda.  Jamil said, “My family”.  He has progressed well in his math studies and we feel that he has progressed in English too.  It is difficult to teach him some things because we have to filter the teaching through English, which he is still learning.  So he is 13 ½  years old, schooling on about a 4^th grade level and emotionally around 10-11 in my opinion.  The reasons for this strange combination is likely a result of his delay in starting school and his chronic illness.  Jamil has loved his many adventures in the USA.  Football games,

 

birthday parties (especially his), Christmas, snow skiing,

 

 fishing, swimming,

 

gardening and taking care of the animals on the ranch have been some of his favorites.  He has gotten to experience an extended loving family and a deep pool of loving friends, that have probably seemed more foreign to him than snow, smooth roads and air conditioning.  Jamil has definitely become a son to Jill and I, a brother to our kids, a grandson to a few, a cousin/nephew to several and a friend to many over the past year. 

 

Here is the situation that we find ourselves in.  Jill and I felt called to bring Jamil to the USA to get medical treatment (we thought this was a surgery) and then to return him back to school in Uganda.  We find ourselves at a point where he has reached his medical improvement, even though surgery was not necessary and we feel that God is leading us to get him back into school in his culture, in Uganda.  We have wrestled with this decision.  It will be tough on our family, his extended family and all that have grown to love him.  It will be tough on Jamil.  Materially, his situation will endure a drastic change, in the opposite direction that it did in August.  He will be back to limited menu and wardrobe options as he would start back in a boarding school in Uganda. 

 

When we have mentioned this decision with others and asked them to pray with us, we can tell that some of them don’t understand why we would not want to keep Jamil with us.  After we “got him out” of Uganda, why we’d consider taking him back.  The simple answer is that we are not sure either.  Just that we believe that God has a purpose in it.  We believe that Jamil can go further in school in Uganda.  We believe that Jamil has more potential to lead others in Uganda, and we believe that his testimony of healing and grace will have a larger platform in Uganda. 

 

We go today to look at some schools in Uganda with Jamil.  Unless God chooses to change his plan in our hearts and  minds, we plan to start him in one of those schools, when the new term starts in one week.  We will continue to support him as if we were sending another child off to college.  We will still make sure that he gets the needed medical care for his NF2.  But make no doubt about it, our hearts are going to hurt.  Make no doubt about it, his heart is going to hurt.

 

Hebrews 4:16 says: “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”

 

We ask that you pray with us for the best decision for Jamil, and for God’s purpose/glory.  We are trying to pray as Jesus did.

 

Hebrews 5:7  During the days of Jesus’ life on Earth, he offered up prayers and petitions with fervent cries and tears to the one who could save him from death, and he was heard because of his reverent submission.