day two...

This is when it got real.  He noticed a white reflection immediately out of the left eye, white is the color of the tumor.  He needed to get a better look in both eyes but due to Jamison only being 13 months old that wasn't going to happen easily.  I had to hold his feet, a nurse his head, and the doctor had to pry his eyes open and clamp them open so he could get a good look.  He noticed white reflections in both eyes and started to talk to me about it.  I knew immediately where he was going.  He then asked about pictures of Jamison and if he ever had a white reflection instead of red eye in them.  Well...this picture was taken in March 2010.

Looking back at the photos he started getting a grayish tint in the late February pictures but in March he started reflecting white.  You can notice that his right eye, the one with smaller tumors, is reflecting red as it should, but the left eye is reflecting the color of the tumor. 

After a long agonizing exam for him he told me they would set up some appointments at Palmetto Health Richland for the following day.  I guess the hospital was giving him a hard time about scheduling the ultrasound and CT scan so he called me and told me to go straight to the hospital after I went home and packed a few things.  He was hopeful they would do the CT scan that night and the ultrasound in the morning.  Well, we waited forever and at about 10:00pm they came in so we could take him do for the CT scan.  The doctor who was going to do it told them there was no way he would be able to get accurate pictures and it would be silly to subject him to the radiation for no reason.  I completely agreed.  I mean he was going to be put under anesthesia the next morning for the ultrasound so why not do them together.  Friday morning we went do for the ultrasound, they started at 9:41am.  Shortly after the doctor came in and told us he was 90% certain it was bilateral retinoblastoma.  He showed us the pictures of the tumors and let us see that the left tumor was in front of the optic nerve and the right wasn't.  His left eye is currently at a +5 for vision meaning he can't see very much out of it.  His right eye is still seeing 20/20.  The CT scan was to confirm that it was this and the confirmation came with the knowledge of white calcium deposits in the tumors. At 11:00am they came to get me so I could go back to recovery and be with him while he woke up.  He immediately wanted to nurse and cuddle.  However as soon as he was able to open his eyes he wanted to get down and play.  He kicked off his heart monitor and his blood pressure sensors, along with his hospital ID bracelet that he had been kicking off all day.  

After many meetings with nurses, peds doctors, the peds hematologist, and Dr. Cheeseman we were left with the daunting decision of what to do next.  We decided to go with the place Dr. Cheeseman highly recommended, The Wills Eye Surgery Center in Philadelphia, Pennsylvania.  We now have an appointment at 9:45 on Monday, November 15, 2010.  Today we spent the day running around trying to get things accomplished so we would be ready to meet with the new doctors.  I had to run downtown to get Jamison's birth certificate because some of the financial assistance programs need it and for whatever reason it kept getting pushed to the back burner.  Then I had to run to my endocrinologist's office to get a letter for flight clearance to board with insulin and all other pump supplies.  Then on my way home the Wills Eye Surgery Center people called to set everything up.  They asked that Jamison have a recent physical and a hearing test done because of the hereditary hearing loss on Jeff's mother's side of the family.  They wanted a baseline since chemo can affect the hearing. 

Although we haven't met with the doctors who will primarily be caring for Jamison yet, we believe the course of action is going to be a combination of chemo therapy and laser therapy.  We have high hopes that some of it will be able to be done in Columbia, but some will involve travel to Philly.  We are both at a loss because who would ever consider that they are going to go through something like this, however we're also thankful because we know it could be so much worse.  Our first goal is obvious, save sweet Jamison's life.  Secondly we hope to save his eyes, and third we hope that his sight will be restored in his left eye.  It is hopeful that as the tumor shrinks the vision will return. Please continue to pray for our sweet lovely boy.  We are so thankful for our support from family and friends and even strangers who are being touched by him.  We love him so much.  

Cole is being a great big brother, though still doing big brother things.  He runs up to Jamison and gives him hugs and then turns around and knocks him down.  When I told him that we might have to leave him with someone next week he looked at me so sadly and whined, "nooooooo."  Poor baby.  I know he's too young to understand.  

Here's to looking forward to the huge cancer free blow out bash we're going to have when this is all over.