Yut!!!
Ryan and I are currently up in Philly for Ryan’s medical appointments at both CHOP (Children’s Hospital of Philadelphia) and the Will’s Eye Institute. Yesterday, Nov 30th, was a MRI and a check up with his oncologist/chemotherapist. The MRI went well. The scan ended up being normal, meaning that there is not cancer tumors running amok in his brain. I did learn that he has what his doctor called a pineal cyst in his head and that it’s not something to worry about. Other than that the check up went pretty well. Ryan was pretty silly after the MRI, which he was sedated for. During the visit with the doctor he would keep wanting to get down off my lap and walk around but he was still too wobbly after the sedation. It almost like he was drunk. He was also pretty funny while the first medicine started to kick in. He would be sitting on the bed and he would yell out at the nurses outside the room and kinda roll around the bed. I had to stay right beside the bed to make sure he didn’t fall off.
Today was his check up at the Will’s Eye Institute. I woke up later than I wanted to so we were kinda late. Ryan did very well at his check up at Will’s Eye. There they do a procedure they call an Examination Under Anesthesia or EUA. So he’s put under for this as well. Ryan will be pretty tired and groggy afterward, but otherwise he’s ok. During the examination the doctor looks inside his eyes and is checking for these things she calls seeds (which are like miniature tumors, I guess). If she sees any she’ll treat them using either a cryotherapy or a thermatherapy. Today she only saw one seed in each eye and she treated them with cryotherapy. Just one seed in each is pretty good since when he was first diagnosed and started his treatments there were over 10,000 seeds. But even one seed can become an issue if it’s not followed up on in a timely manner. One seed can grow big enough to fill the entire inside of an eye, if that happens the eye will have to be removed. His doctor at Will’s Eye mentioned that during the debriefing and also mentioned how we were so good at being able to always make the appointments. She said that I get a gold star for that. So, all in all she said that he looked really good and seems to be pleased with his progress. I also had received mine and his genetic results. We had voluntarily opted to be included in the research that was being done on retinoblastoma. My results just said that I didn’t carry the genetic mutation that causes retinoblastoma. YAY!! Ryan’s on the other hand is a bit more grim. His results indicate that even though the mutation that caused his retinoblastoma was sporadic, he has the hereditary form of the disease. Which means that there is a fifty percent chance that his kiddos will get retinoblastoma. Also he is at an increased risk of getting other types of cancer. Want to hear a bit of the more technical side of the disease? I’ll include it and Jayme can take it out if she wants to. OK first everyone has the gene that causes retinoblastoma and it’s called the RB1 gene. The RB1 gene is made up of 27 sections called xeons. There is also a part of the gene that is called a codon which tells the gene when to stop building xeons. In RB1′s case the codon tells it to stop at 27 xeons. Ryan’s RB1 gene has a codon that makes the gene stop building at 11 xeons, which is what the mutation is. The professionals doing the research still aren’t sure what exactly causes this mutation. Anyway, Ryan’s gene isn’t recognized by his body and the cells carrying the mutation continue to divide uncontrolled and that is what creates the tumors. Well that’s the way I understood as.
After we were all said and done at Will’s Eye Ryan and I came back to the hotel and we had a bath and a shower, had a snack and then took a nap. Usually Ryan is pretty cranky after a visit to Will’s Eye, probably because his eyes hurt like hell. His eyes will be really red and swollen too. This time his eyes didn’t look so bad and he wasn’t really cranky this time around. After our nap I played some WoW while Ryan played around in the room and sat in my lap while I played. Then we got hungry and I decided that we should go to a place here in Philly called Nifty Fifties. I had an extremely delicious Philly Cheesesteak (can’t come to visit Philly and not get a cheesesteak) and Ryan had a cheeseburger, which he almost finished. After that we shared a hot fudge sundae. I just put Ryan down for bed and tomorrow morning we’ll pack up and start headin home.
Ry-guy at Nifty Fifty's
This sounds like such good news! Glad he did so well, and LOVE LOVE LOVE this picture!!
Sweet little guy (sweet daddy too). Sounds like he’s darn near in remission. I am really sorry to hear about the genetic aspect and increased risk of otherr cancers, though.
Hey Jayme?? Can I borrow your husband sometimes?? How freaking sweet is he?? I’m not even sure Mike knows how to find my blog half the time =X
Thanks for posting Aaron, what a sweet dad update!! I actually really like the detail you put in about the genetics & the seeds, its really interesting & good information to learn, which otherwise I never would have.
Thanks for sharing & of course, we’ll keep thinking about Ry guy!!
Wow, Glad everything went well and things are looking up for this whole Family!..An awesome update Aaron…(((((((((((Family))))))))))
What a cutie pie! So glad to hear that things went fairly well. Hope he continues to have great appointments and how wonderful of you to post such a thoughtful update!
Awesome! I’m glad to hear things went so well this time! Sounds like you guys had a good time too. Love the picture!!!
So, will Ryan always have this cancer? Can it ever go into remission??
I’m glad you had a successful visit. I love Ryan’s picture at the diner. Looks like, despite the circumstances, you had some great father/son time.
Sounds like he was a trooper! So glad there was only 1 seed in each eye, amazing that there used to be 10,000! That is insane to even think about.
Wow, sounds like a great check-up! He’s such a cutie and seems like a happy little guy! You guys are doing a great job of staying on top of everything! I can imagine these trips are very stressful on everyone.
He’s a cutie. It must be very stressful for you guys though. I will include him in my prayers to continue having good news at his appointments.
Awesome news! Glad to hear your little man is doing so well. Ryan is a lucky little guy to have a daddy like you. Thanks for the update, Aaron!
Awesome checkup! I’m glad you explained the genetic stuff, it’s always interesting to learn something new. Hopefully by the time he starts having children, something will have been found to help it! Glad the little guy is doing well today!!!
Yay! That sounds like great news!! I bet you will be happy to have Ryan and Aaron home!
By the way, I have a pineal cyst too….have had it since high school. Never would have known it was there…
So glad that things are looking better for Ryan! Much praise goes out to the doctors assisting him, and his super-brave daddy taking him to his appointments himself! Most guys would be overwhelmed and would leave it up to mommy. And lets not forget mommy holding down the fort herself
Gold stars for everyone for sure!
I love Aaron’s updates, what I love most is that he retains all of that information. My husband wouldn’t remember a thing.
I never remember that kind of stuff either LOL
Glad to hear the good news – prayers continue for Ryan. What a great guy your hubby is! Watch out you will have to start a fan club!
Ryan is so darned cute. Prayers continue for your family. Glad to hear Ryan is doing so well.
Love this picture! Glad you and Ryan are having some bonding time, even though it’s under these circumstances. What a great daddy you are! Praying for everyone!
Awesome job, Dad!
I’m so glad it was good news – only one seed!
Ryan is doing so well.
What a wonderful Christmas present, eh? You’re an awesome Dad Aaron. I will keep you all in my prayers