Wednesday, June 10, 2015

An exam in New York

I am so, so thankful for the doctor who examined Elijah! He has been a pioneer in the field and had some great things to say.

First of all, he does not think Elijah needs chemo at this time. We can continue to treat with laser as long as it works. Unfortunately, it is too soon at this time to see if it has worked. But as long as it does work, then we can continue with that course of treatment. If at any time, the laser treatment is ineffective, then we will be back here in NY.  There are other ways that retinoblastoma tumors are treated, but they aren't good options for Elijah.

He currently has three small tumors. Two of them are not in his central field of vision.  One of them is. This makes it more difficult to treat with laser because of the chance of damaging vision. This is obviously more important as well because he only has one eye.  
We were told that the laser works best on dark eyes-it is a little more tricky on the lighter colored eyes. 

Obviously these are just statistics here, but they are important considerations. Because of the young age at the time of his diagnosis, Elijah has anywhere between 50-96% chance of developing new tumors until about age 7.
Again, these will be treated with laser as long as it is effective. The doctor said we should expect that he will need laser treatments in the future. 

We are SO overwhelmed by the love and support of so many. It has been amazing to feel like we have a whole army of friends and family doing battle alongside us.  There are SO many ways that God showed Himself to us today....

I went down to the front desk at 11:30am to ask about getting into the city for Elijah's appointment at 2pm. They said a shuttle was leaving the hotel at noon, to take me to the ferry, which will take me to Manhattan, where I should catch a cab.  I literally got everything together, put Elijah in the ergo baby carrier, walked down, and hopped on the shuttle (that was full except for one seat, and waiting for me). On the ferry, I met two lovely ladies who gave me some pointers for navigating things. I got off and went about trying to get a taxi....I saw some people climbing out of one, so I asked if he could take me. As I climbed in, I looked up and saw a sign hanging from the rear view mirror which read: I love Jesus.

In LA, after Elijah is in pre-op, they wheel him away for his exam and put an IV in. When he wakes up he is mad and has all kinds of wires everywhere.  Here, they use gas instead of an IV. So I got to go in the exam room (they have an OR decdiated just to retinoblastoma patients). I laid him down and held his hands to his tummy, and they put the gas mask on while I spoke gently to him until he fell asleep. Then I went out of the room until he was done, and the doctor came out and sat with me. We got Ben on speakerphone so that we could both hear what he had to say. It was such a gift. We really value this doctor's time and were so thankful for his opinion in examining Elijah. (We are also so very thankful for the doctors, nurses, and staff at CHLA)!!!

We are just so thankful. Taking one day at a time. And ready to slow down and try to enjoy the return trip a little more, now that we aren't quite so rushed.
Thank you again, to all who have prayed, donated, supported, encouraged and journeyed with us.  It's still kind of the beginning of our road with Elijah's cancer. But we are so thankful to have all of you with us as we walk.


Amanda Rogers said...

Praising Jesus for the little things and asking Him for bigger things in the days to come.

joyfulgirl said...

Oh how grateful I am for your faithfulness in this journey Lisa, and how grateful I am for His faithfulness to His children. He knows the plans He has for you, plans for welfare and not for evil, to give you a future and a hope. I know your need for hope right now is great. Thank you Jesus that you came to give us a future and a hope!!! We love you friends. . . . Aubrei