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Retinoblastoma, Treatment

This is the second part of this story which begins here.

 

One thing that seems so obvious to me now, as I look back on 1999 and the years following, is the unmistakable presence of God through all this.  We, although numb, were conscious that we were riding on cloud of love and prayers.

We returned home that late Friday afternoon (the week of Colin's 2nd birthday), working the cell phone the whole way.  Telling our moms, and Colins' godmother, was undoubtedly the hardest part.  By the time we got home, people began to arrive, our family and friends, and our priest.  I don't remember much, except I remember how unphased Colin was by all this.  He and his cousin Gabrielle danced and had a good old time.

Kelley had of course called her twin sister Kim.  Kim of course was shocked.  But, what she had to say was amazing.  She and her husband Vinny were just preparing to go camping for the weekend with another couple.  The other couple was with them at their house, and the man was an old family friend, Lance.  Kelley was aware that Lance had a prosthetic eye, but never knew why.  When Kim of course told everyone the news, Lance's eyes swelled with tears, and he said, "That's what took my eye at the age of two."  (!!)   He got right on the phone with Kelley, and said, "please call my mother!"

Kelley, of course did so, and drew much comfort from the conversation.  Lance's mom cried with her as she recounted this event in their family, 20 some years earlier.  But she assured Kelley that she could get through it!  And the fact that Lance was a healthy, well-adjusted adult, who had enjoyed playing baseball all through his youth.  (one of my first questions to the doctor was, "Will he be able to hit a baseball?"  Colin has since proved that he can indeed!)  God's providence was so evident, right from the beginning!

The next evening, Saturday, our priest Fr. Jayson, held a healing service at the parish for Colin.  Many friends and family gathered with us to pray for Colin...and we knew many more were praying from wherever they happened to be.  We gathered great peace from that service, and felt a little more equipped to face this challenge. 

ON Sunday morning, we were present at the Full Gospel Tabernacle, for the dedication of our nephew Liam.  Pastor Reid of course had heard the news, and they brought us up on stage to pray for us.  While we were grateful for their prayers, what we really wanted was to be back in our own church, recieving the body and blood of Christ.  But God's will was done, and we knew we had all those good people from our former Church praying for us, as well.

Monday was the CAT scan.  Fr. Jayson accompanied us.  While his short tenure as our parish priest was beleaguered, and he has evidently since left the Orthodox faith, I have to give him lots of credit.  Like a true pastor, he was with us every step of the way, never letting us be alone.  I am eternally grateful for his love and ministry during that difficult time in both of our lives.

The CAT scan revealed what we already knew.  The cancer was large, and untreatable.  Well, the only treatment was enucleation, complete removal of the eye.  And to pray that the tumor was "encapsulated," that is that it had not spread through the optic nerve to the rest of the body.  When Colin was born, the most often heard comment about him, was about his "big, beautiful eyes."  Yet here I was, giving the doctor my approval to take knife in hand, and cut out one of them.  Jesus word's, "If thy eye offend thee, cut it out," came to mind.

As we left the hospital that afternoon, our cell phone rang.  It was a friend of mine from the police dept., and he said, "Hey, you've got to talk to Tim here!"  He put Tim, a guy I knew, but not very well on the phone.  Tim proceeded to tell us that his niece (I think it was), had dealt with the same thing, and would we call his sister?  We did, amazed again, at the people God continued to put in our lives.

While we drew comfort from another story, this time we also drew some anguish.  For this lady told us of a clinic in Philly, that had opted not to cut out her daughters eye, but treated her with radiation and were able to save the eye.  Now this put us in a delimna.  I would have course, strapped him on my back and swum the ocean, if I knew I could have saved his eye.  But the surgery was scheduled for the next day (Tuesday), and the surgeon was then leaving on vacation for two weeks.  It was crucial to remove it ASAP, as to prevent it from spreading down the optic nerve.  After talking with the surgeon again on the phone, we decided that we believed him, that the tumor was so big, that the only course of action, was to remove the eye.  Sight could never be restored in it (and he probably had had no sight in it for 3 months or more), and the risk of spread was too great.

In retrospect, I was glad that we went through that.  I had even called the airlines to try to get a "red-eye" (no pun intended) to Philly that night.  After that, we never doubted that we had made the right decision.  But let me tell you, it was an agonizing hell to go through.

So Tuesday we get up and go to Buffalo Children's Hospital, to have his eye removed.  We had our family with us, Kelley's dad had even driven up from North Carolina.  We had four minister's pray for Us.  Fr. Jayson was with us again, and Fr. George, believing that Fr. J had gone to the archdiocese convention came and prayed as well.  The Protestant hospital chaplain, came and prayed, and Dave Bemis, the Sr. Associate from "The Tab," came and prayed as well.  All we needed was a Catholic priest, and we would have had the bases covered!

The hardest thing, was letting them take him from us for surgery.  While we had sat in the "pre-op" area, he was playing so happy with the toys they had there.  He had looked up at me with those big blue eyes, and I had to remind myself that one of them was "dead."  This was made easier, because the previous day after the CAT scan, I had taken him to change his diaper, and under the bright lights of the bathroom, I saw the "monster" for myself.  He looked up at me, and there it was, white and flaky.  It was actually terrifying.  But it did make it easier to give him to the surgical nurse.

Colin, left as he always does, calm and without complaining, "Elmo" in hand.

 

To be continued...

Posted on Monday, March 28, 2005 at 09:23AM by Registered CommenterDeacon Raphael in | Comments3 Comments

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Reader Comments (3)

Aw, what a great little guy. Eagerly awaiting the next installment. :)
March 28, 2005 | Unregistered CommenterGina
My son had retinoblastoma and reading your story brought me to tears. I believe I was in so much shock and confusion that I can barely remember anything. We are blessed it only took one eye. The amazing part is that he is such an athlete. I am not kidding...he always is at the top of his teams. It's amazing. I remember a heart breaking time when we were at Kings Island Amusement Park. We were in a 3D Spongebob Ride and I watched him take his goggles on and off with a look of confusion. It was sad.
June 1, 2007 | Unregistered CommenterJill
Jill, thank you so much for your comments. How old is your son now?

We thank God for his presence with us in this tragedy . . .

I think its time to post a follow up . . .
June 2, 2007 | Unregistered Commenterfdr

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