Looking ahead....

My little New Yorker boy!

After a whirlwind of a week, we have prayerfully decided that transferring Elijah's care to NY is in his best interest-at least for now.  When Elijah was first diagnosed, he presented with unilateral retinoblastoma-meaning, just one eye. The tumor was so far advanced, and being that the cancer was only in one eye, the best decision was to remove that eye. Many times with unilateral, removing the eye is the only treatment ever needed, and that child can be done with cancer altogether. Obviously, that was our hope for Elijah.

Part of the reason they do genetic testing is because with retinoblastoma in particular, there is a specific genetic mutation that is present either in just the cells of the eye, or throughout the whole body. When that mutation is found throughout the body, the risk for secondary cancers are very high-the most common being bone cancer (I'm not sure as to why on that.)

On Thursday, June 4th, at Elijah's last exam in LA, it was kind of a surprise to everyone-including his doctor. Finding tumors in his remaining eye meant:

1. He had active tumors that need to be treated (which also means his exam schedule gets bumped up to every 2-3 weeks)

2. His diagnosis is now bilateral retinoblastoma, which is a whole different ball game

3. Virtually every child with bilateral involvement is positive for the genetic, germline mutation. So he is at much higher risk for secondary cancers.

With the active tumors present, and especially with one in his central field of vision, we want to be vigilant and try to preserve vision and the eye!  So. I will be flying back to NY with Elijah for exams. Once these current tumors are stable, then we will reevaluate.

FAMILY TRAVEL INFO. 

We were able to take the kids on the Staten Island ferry, where they could see the Statue of Liberty...it was so cute hearing Ev say "Statue of Liberty".

We walked into NY and saw the 9/11 Memorial, and by that time we were all pretty beat.

We got back to the car and headed to Maryland. Ben's mom lives there (but was away on business travel.) It was nice to have a safe place to land for a few nights while we regrouped and planned our return trip. Her place is about half an hour from DC, so it also gave us a chance to show the kids some fun things that we study last year:

Lincoln Memorial

 

The White House-Emma told Caleb-"you should become president so we can see the inside of the White House."

Washington Monument-how cool to hear Revelation song playing as we came up

Looking towards the Lincoln Memorial

We had a great time, but it was super hot, and I think we were all pretty worn out. Thinking about making it home was pretty overwhelming. But, today is a new day and we are back on the road. We *hope* to make it home and recover for almost a week before it's time for me to fly back with Elijah.

Thank you all so much for being on this journey with us.