Ryan has finished another check up with the doctors up here in Philly. Yesterday he saw his oncologist at CHOP (Children’s Hospital of Philadelphia). At least, I think she’s an oncologist. When we first met her she said that she was a chemotherapist. But, anyway we saw her yesterday and that visit went well. I think it’s mostly for the doctor’s benefit than anything really. The visit is mostly so she can look at Ryan, hear about how he’s been, check his blood and whatnot. She did say that she wanted Ryan to have another MRI in May, other than that not much particularly significant. Today we saw the doctor at Will’s Eye Institute for Ryan’s EUA ( Examination Under Anesthesia). The examine at Will’s Eye went well too. The doctor was once again pleased with the progress that Ryan is making. She also said that there were NO NEW SEEDS in his eyes. All she did today was treat the ones that had been there from the previous visit. The doctor is hoping that no new seeds have developed by the time we see her again in April. So now there is a light at the end of the tunnel.
Update from Philly
Update from Aaron
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
Ryan’s Appts
Yesterday was a pretty eventful day for Ryan and I. We set out yesterday morning to head to the Will’s Eye Institute for his evaluation under anesthesia (EUA). We were heading south down I-95 when the van started acting funny. It didn’t seem to want to move any faster when I pushed the gas pedal. Thankfully traffic was backed up and it was slow going anyway. So I pulled off onto the shoulder to see what the problem was. Once I stopped and put the van in park, I revved the engine to see what would happen. It revved like it should have and then I put it into reverse and had the same problem. I turned the van off and went to start it again, it wouldn’t start again. Oh this is just wonderful I thought to myself. Eventually the state troopers came by and they called a tow truck to get us off the highway. The t0w truck only took the van to the first exit and dropped it off.
Ryan and I got to ride in the police car. The trooper was really cool though, he had been in the Marine Corps so we talked about Marine stuff while we followed the tow truck. Once we got dropped off I got a hold of my road side assistance company and got picked up by them and they took us to the nearest Nissan dealership. They figured out that the alternator and the battery was shot and needed to be replaced, were waiting for the claim to go through with the warranty company and they were waiting for parts to come in from another store. They got us set up with a car we could borrow while we waited for the van to be ready.
After all that Ryan and I finally made it to Will’s Eye about 5 hours late. They seemed to be a bit upset about it too. I had even called the only number I’ve got for them and told them what had happened and they said that they would relay the message to them. Apparently they didn’t though. Anyway, the treatment went well and all the doctor had to say was that he was looking really well and that his retinas are flat, which is a very good thing. We were supposed to go to CHOP afterward to start his LAST round of chemotherapy, but by the time we were done at Will’s it was too late.
This morning Ryan and I headed over to CHOP to get his chemo started. After some IV issues they got his chemo going which went well too. Ryan slept for about the first half since he was tired and when he was awake he was the sweetest little boy ever. All the nurses kept saying how Ryan was the best baby they’d ever seen. He was all smiles, talking and playing nice. Tomorrow we’ll be headed back to CHOP to finish up his round of chemo. I suspect it’ll go just as well as it did today.
I’ll Let Jayme Title This
Yes, like Jayme said Ryan did very well during his chemotherapy today. He was all smiles and laughs while we visited with the oncologist and during the first half of his treatment. For the last half he slept until it was all done.
I guess I’d like to try and put his treatments into perspective. When we began his first treatment the oncologist said that the medicines that he is getting would make an adult want to curl up into a ball and lay in a corner. The drugs themselves come in these glass jars and have warnings saying “hazardous drugs”, “use caution”, use gloves and eye protection when handling”. Things like that.
The thermotherapy treatments are no joke either. After he gets done with those his eyes are all red and swollen. Ryan is also really groggy from the pain medications he gets.
Ryan’s oncologist works very closely with his eye specialist. While I was visiting with her today she told me about this device that is like a contact lens that delivers radiation to specific spots in the eye. I thought that was pretty neat. I also asked her if there was a chance that Ryan may need more chemotherapy. She said that it was highly unlikely. She said that the eye specialist at Will’s Eye is very good at getting rid of the remaining tumors.
I don’t want to title it! I don’t know what to put. And I’m glad he just posted about Ryan, I saw him typing and asked and he wouldn’t tell me his topic. I was afraid it would be something embarrassing, and thought perhaps I shouldn’t have given him his own log in to the site. It’s OK though- I’ve got some stuff up my sleeves to post about him if he decides to post something embarrassing! Or maybe just for fun anyway…
Also, if I’d known he was going to post tonight I wouldn’t have put up my random thumbtack entry.
Ryan’s Appointment at Will’s Today.
Jayme tells me that all of you are wanting to hear the specific details concerning Ryan’s appointment at the Will’s Eye Institute today.
Today was his fourth appointment there. Backing up to his first eye exam, the doctor confirmed his diagnosis of bilateral retinoblastoma. Bilateral just means that there are tumors in both eyes.
The tumor in his right, which was the biggest, was classified as a group D tumor and the one in his left was a group C tumor. The tumors actually grow on the retina, I had learned that today. However, as they get bigger the can eventually start getting in between the retina and the eye wall and begin to detach the retina from the eye wall. This was starting to happen with Ryan.
The tumors also cause fluid to build up within the eye. The doctor referred to the fluid as “blistering.” At the point of diagnosis his vision was estimated to be limited to him just being able to differentiate between light and dark. Ryan was also only four months old at the time.
A couple of months and two chemotherapy treatments later we got to take Ryan back to Will’s Eye. The tumors had shrunken significantly, however the tumor in his right eye had shrunken to a point which revealed a smaller tumor hiding underneath it and a bunch of smaller pieces, called seeds, were hanging around. The tumor in his left eye had just simply gotten smaller and the “blistering” fluid was completely gone from both eyes. The next visit went pretty much just like the last one, that the tumors were still getting smaller.
Today the tumors are still getting smaller, the two tumors in his right eye are still there and the one in his left is getting smaller still. This time, the doctor seemed to be extremely pleased with the progress that he’s made. She said that his outside vision is pretty much intact and that the retinas have reattached themselves. She was also very optimistic about Ryan being able to regain almost the full use of his vision. Needless to say, I was extremely elated to hear this news.
I swear that Ryan has THE best eye doctor in the entire country caring for him. She’s not the most personable doctor in the world, but she is very professional and has a sense of attention to detail that impress even the most demanding drill instructor. With her everything must be razor sharp accurate. Exactly the kind of person anyone would want to work on their eyeballs.
So far this has been a long, arduous journey that is still far from over. Even after the chemotherapy is done we’ll still have to make the trip to Will’s Eye for the next year or two. But, the end state will be totally worth it.
