Sunday, September 14, 2014

Updating Jamil's Medical Plan

Let me start today’s blog with a big thank you to everyone that has been praying for Jamil.  He continues to appear well and to adjust to living in the USA.


This past week, we took Jamil for a regular visit to see a pediatrician in Oklahoma City.  He was started on a vaccination schedule to get caught up for years of being behind.  He did not like the 4 vaccination shots that he received in addition to the PPD skin test that was placed.  He will have to get a few more in November.


On Wednesday, Jamil had an appointment with a pediatric oncologist.  This is a doctor at OU that is well acquainted with Neurofibromatosis type 2, as her sister had this.  She also has recently treated a young man with an ocular meningioma, like Jamil’s.  She reviewed his files and got his history the best that we could relay it.  Following that visit, she took all of his information and scans to “Tumor Board” for the review of all of the cancer doctors, radiologists and surgeons.  As they reviewed his old CT scans, they could see the tumor in his cavernous sinus as far back as 2012, when we first met him.  This news is a little encouraging because this means that the progression is likely slower than we thought.  The consensus of the board was that they thought we should take a wait and see approach.  There is a scenario where meningiomas will swell after radiation, for up to a year.  This looks like the tumor is growing, but then starts to recede.  Jamil is just over a year from finishing his radiation that he had in 2013.  The doctors at OU would like to repeat his MRI just before Thanksgiving and see what it is doing.  They do acknowledge that the tumor involves the bones of his face and the cavernous sinus.  This is something that can not necessarily be “cured” by modern medicine.  The progression can be slowed and sometimes halted. 


We intend to employ all that modern medicine has to offer and add in a heaping dose of prayer to the mixture.  Please continue to lift Jamil up in your prayers.  Please pray specifically that the tumor growth to halt and actually recede.
We spent the weekend with some friends in Hinton and then at the OU game.



We will continue to update the blog as indicated.




Saturday, September 6, 2014

"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.