Finally an update

My poor baby.  Really my poor family.  We have been through so much in the last week and a half.  It's hard to process it all but we're working on it.  In a whirlwind we flew up to Philly on Sunday, he had an excruciating appointment on Monday.  His appointment time was 10:00.  We finally got checked in at 12:15, then we FINALLY met with the doctor at about 3:00.  They did another ultrasound on his eyes, that was quick and not painful.  But then came the hard part.  They had to clamp his eyes open again, which I was expecting.  Two male doctors held him down while Dr. Shields poked around his eye with a cotton swab so she could get a better look at the tumors.  She confirmed the diagnosis and set up an appointment for a EUA (exam under anesthesia) for Wednesday morning.

Tuesday we met with the oncologist, Dr. Leahey.  She explained the medicine he would be given, three different medicines are used in chemotherapy.  Then she told us all of the many risks and side effects.  Not what you want  to hear, but we need to expect it.  We took a little tour around the floor so we would know where to go on Wednesday.  Dr. Leahey was blunt but we feel like we got more information from her than we did from Dr. Shields.

Wednesday was back to Dr. Shields for an 8 o'clock appointment.  He was finally called back at 10, then we went through all of the talks with the different doctors that would be assisting on his exam.  Someone also approached us for genetic testing and since it was a clinical study they were working on, it would be free so we went ahead and did it.  It did involve spitting, which I am horrible at and gagged quite a few times.  lol  After they took him back we were in the waiting room and met a few other families who were either going through or had recently gone through this and it was comforting to talk to them.  They finally called us back to talk with Dr. Shields and she told us everything should be fine, his right eye is having some of the vision blocked and the cancer in the left eye is a bit more aggressive and larger.  We were left to wait on Jamison to wake up.  We needed to be at the other hospital by 2 to start chemo or there was a chance he would have to be admitted.  Around 12:30 we finally found someone to ask about him they said he was still sleeping but then they realized we needed to get to the other hospital and brought him out even though he was still extremely groggy and 3/4 asleep.

When we got to CHOP, they informed us on the ratings of his eyes.  They are rated A, B, C, D and E.  A being the best, E the worst.  His left eye is a D and his right eye is a C.  Unfortunately this means a more aggressive chemo with higher concentrations of two of the medicines and it also means he'll need a port put in.             But he doesn't have E eyes, and E means removal.

He did really well with his chemo on Wednesday and Thursday, eating somewhat normally and sleeping normally.  Friday, though he vomited all over the chair in the hotel room.  Then he slept the entire flight from Philly to Atlanta.  In Atlanta he vomited all over me twice, but I had a couple changes of clothes for us both.  Then he slept from Atlanta to Columbia.  He has vomited both mornings, but is regaining his strength and is smiling a bit more.  It's nice to see him smile and laugh.  We got our Coley Bear back Saturday afternoon and we have been snuggling and playing with them since.

Jeff's going to work tomorrow and I'm a little nervous about that because Jamison is definitely being more clingy and needing to be held more.  But I know he will come home if I need him.  And he only has to work 3 days before Thanksgiving.  We're not traveling for the holidays because we just got home and are exhausted. I have to take Jamison to the Children's Hospital down here on Tuesday to do a CBC and talk about getting his port put in.

Keep praying for him and we most certainly appreciate all of the love and support we have received over the last week from family and friends.