"Complicated but not Hopeless"

We found out 9 days ago that Jamil’s meningioma tumor that we have been battling for the past 2+ years had spread to the front part of his brain, in a large blood vessel called the cavernous sinus.  This took us by surprise, as the last CT we had obtained in Uganda showed no spread to the brain.  This previous scan was done in June and I suspect that the combination of 3 months passing and more sensitive medical equipment are the reasons that we can see the brain involvement now.  Our original plan of obtaining a delicate surgery to remove the tumor from Jamil’s eye socket, recovering while stressing his school work, then returning him to Uganda in late January was now obviously not going to work.  Our biggest fear was that the tumor would be deemed inoperable and that his stay in the USA might feel more like hospice. 

 

Upon hearing of Jamil’s new complications, a doctor friend of ours and of Uganda graciously volunteered his time to take Jamil’s CT scan and medical information to a neurosurgeon that he knows through their common practice at OU Children’s Hospital.  These two doctors met up on Saturday of Labor Day weekend to give free attention to a boy that neither of them have ever met.  The neurosurgeon wanted an MRI done to look at the brain and central nervous system a little more closely.  We were able to get the MRI done on this past Thursday.

 

The neurosurgeon called me last night and said this regarding Jamil’s medical situation: “It’s complicated but not hopeless.”  In a different situation, those words might seem discouraging, but in light of the desert canyon that we have been hiking through, in the last 9 days, it was like a fresh spring in an oasis.  There is hope that with a combination of surgery, radiation, possibly chemotherapy and close surveillance, that Jamil could come through this.  Jamil’s MRI did give indication that he has a chromosomal abnormality called Neurofibromatosis Type 2.  This condition is known for having meningiomas that affect the central nervous system and some other associated problems.  This bit of information will necessitate that Jamil be monitored closely, after his current treatment, for future problems through a special clinic for NF2 patients at Children’s Hospital. 

 

So the current medical plan is to get an appointment with a pediatric oncologist (cancer doctor) at OU Children’s and present to them all of our gathered medical information from Uganda and the USA.  They will then present Jamil’s case at “Tumor Board”.  This board is a gathering of the surgeons and cancer specialists where they discuss certain kid’s cases and the best treatment plan that brings all of the needed specialists together.  Then we will have a for sure plan.  Please pray that this appointment will happen promptly and that the tumor board will have wisdom to take Jamil down the correct path. 

 

On a second front, we understand that 6 months here and then back to Uganda is not going to work as well as we originally thought.  We feel that God is moving this project in a direction that He will have us adopt Jamil, "legally".  This would allow him to stay in the USA indefinitely and enable us to support him through whatever the future holds.  To that end, we met with an international adoption attorney yesterday to explore that option.  Please pray that this will work out in the exact way that God wants it and in a way that is best for Jamil.

Last night, Jake skyped in with us as we had a “family meeting”. 

 

I got a cow skull and two socks and tried to explain to Jamil exactly what we were dealing with in regards to his medical condition.  He voiced understanding that this had become much more difficult to treat and that it could even be life threatening.  We also talked about the possibility of adoption, because we obviously want him to be on board with any medical or family decision that we make, on his behalf.  It was much for him to absorb, but I think that he is grasping the magnitude of the current situation.

 

Please join us in praying for Jamil’s total healing, no matter how that might look.

 

#HealJamil

 

Jay