@ the pool with Uncle Chris

We love Uncle Chris!!! My brother came over tonight to go to the pool, have dinner and hang out. It is wonderful to have him in town for a few weeks.

I miss him when he is not around.

Such a Stinker!

I captured these pictures when we were waiting to see the doctor at CHOP on Monday. This part of our visit tends to be when Owen gets the most restless and fussy...right after his port is accessed, waiting for the blood counts and for Dr. Cole to check him out, just about nap time. Yesterday he was in such a silly state...he has certainly developed a strong personality! Owen kept hitting the wall and looking at me...giggling hysterically (he seems to find it funny to do things that will get a reaction out of you...usually things he probably shouldn't be doing). He also found it funny to keep smacking Joey with his turtle and then stuffing it in his mouth. Joey just adores his brother and plays right along.

Treatment went well...typical visit other than a rash Owen has developed on his legs and arms. The doctors think it might be a reaction to the antibiotic he takes weekly to prevent a strand of pneumonia. They plan on switching his meds and seeing if it makes a difference.

Pics from Sunday's race...

You did what???

"I did something you might not like" -Joe

I got back from Aimee's house the other night, to find out that Joe gave Owen his first haircut. No pictures...although he told me he saved the hair. Owen definitely needed his mullet cut...thankfully Joe is no barber so I had the chance to clean up the cut the next day. Joey was our official photographer.

Today Joey had his first race. A one mile fun run for Big Brothers Big Sisters. He completed the race in 9 min. 40 sec. Joey has two speeds...SPRINT: I call it the "angry run" because he runs with all this venom and vigor and STOPPED: bent over, hands on knees, chanting I can't do it. He repeatedly followed this pattern and still finished in under 10 minutes. So proud!!

The 5k race was held before Joey's race. It was great to have him, my mom and Owen cheering me on. I finished in 27:43...which I was happy with since my first 5k in June I finished in 31:00.

I'll download the race pics tomorrow...cranky Owen is loosing patience with me!

"Cousins"

Joey and Owen have 3 adorable cousins, Toddy (Joe's sister Eileen and her husband Todd's son) and Patrick and Findlay (my brother Chris and his wife Shannon's sons). He loves playing with them and looks forward to when he gets to visit with them.

But the cousins he constantly refers to and talks about are his NY "cousins": "When are we going to see the cousins???" "I miss my cousins." "I never get to see my cousins!"
Definition of NY cousins: My Aunt Amy and Uncle Frank's kids: Julia, Liam, Kelly and Aidan. Joey is obsessed with them!

This past weekend we were invited to Charlie's fourth birthday party in Queens, NY. Charlie and his sister Emma are my Aunt Laurie and Uncle Chris' kids. It was great to see everyone and spend time catching up. I enjoyed talking with my grandma and Aunt Amy and watching my grandpa and brother play bocce ball. The kids had so much fun running around trying to peg each other with water balloons. Joey thought the trip was "Awesome"...not surprising. ...we definitely have to work on his range of vocabulary before September.

32 more...

Owen started his maintenance phase of chemotherapy on Monday. Everything went fine except for some unexpected news. Joe and I believed that the maintenance phase would be ten treatments given over 10 months. How exactly we came to that conclusion we are not completely sure. But this is what we both believed would be the next step for Owen. Totally manageable...life would return to somewhat normal only having to make the trip to CHOP once a month. Were we wrong! Most likely when we began this "adventure" we read the maintenance "road map" incorrectly. As it turns out, Owen will have 8 more cycles of treatment which consists of 4 weeks "on" (once a week treatment for 4 weeks) and 3 weeks "off" (no treatment for 3 weeks) and repeat this cycle 8 times. Total of 32 more treatments over a span of 56 more weeks...we were blown away by the news to say the least. So now after a few days the news is beginning to settle in. Just a change in mind frame...juggling of schedules...decisions about Owen for child care when I go back to teaching in the fall...all manageable, just a little sad that Owen has to go through so much still. He'll have a number of MRIs during the cycles to assess his progress and hopefully after all of this he will be done.

So it was a long, mentally exhausting day. We dropped Joe off at work after we were finished, stopped at Wegmans for dinner stuff and to appease two cranky little boys I broke open the marshmallows on the way home. I had to get a picture, although it barely picks up the extent of the sticky, gooey mess. Totally worth it for the two smiley faces...but does anyone have any great tips for removing marshmallow from fabric???

Uncooperative

A two hour drive...a one hour wait...and surprise, surprise...Owen was uncooperative for his eye exam. It wasn't even the whole exam, just one small part (the lines test) and he has to return for the same tests in a couple weeks. Every visit we have had to the Neuro-opthamologist has been excruciatingly long and normally turns out with Owen being deemed "uncooperative" after 3 out of the 5 tests he is administered.

I felt uncooperative after that long wait.

The day dramatically improved with a visit to the Academy of Natural Sciences. What a fantastic museum, great exhibits, perfect size and very quiet (as long as you can stay away from groups). Joey was in awe of the dinosaurs and Owen loved the turtles and fish. On our way back to the truck we stopped by the Logan Square Fountain. I am pretty sure it has a different name, but that's what I've always called it. I have such great memories of goofing around in this fountain with my friends and brother. It was pretty neat to "share" my favorite fountain with Joey. His word of the summer to describe the experience....awesome.

Cool Dudes

It's been a pleasantly quiet week. Joey started swimming lessons (this was the best shot I could catch of the little fish) and he is picking up a lot. We have had a relaxing summer rhythm the past few days: swim lessons...lunch at the pool..home for a nap. The evenings still tend to be busy, but it is a fun busy: Shelby Lynne concert last night...reptile guy at the library tonight. Tomorrow Owen has his appointment with Dr. Lui at CHOP, afterward I think we'll head to the Natural History Museum. Joey has been reading the Magic Tree House book about dinosaurs so I think he'll dig it.

Cannot Record!

Standing underneath the Kelly Park bridge, I had an excellent shot of Joey wading in the stream only to realize I had left the memory card in the printer. I tend to carry my camera everywhere and with Owen still so young, it's great just to throw it in the diaper bag. Today was the first day I ever grabbed it without the memory card...which was a bummer since we had such a fun and busy day today. Missed shots:
1. Joey, Katie and Robby wading in the stream with 25 other kids looking for bugs. This was the second day of a nature program held by Chalfont Boro.
2. Owen's little toes squishing in the mud.
3. Joey practicing his freestyle stroke, gasping for breath and struggling to keep his hiney up. He is determined to pass the test to swim in the dive pool.
4. Owen's first taste of Nachos and cheese (Joey's pick from the pool snack bar)...he was a mess but he loved them and for a kid that only eats yogert and blueberries this was truly exciting to watch.
5. Joey dragging on the walk back home..." I have a stitch." He hears me say this when I go running...after making him walk the mile into town, over to the pool and then a mile back home, he probably did have a stitch. I keep telling him all the exercise we have been doing will help him get ready for football...I think he is starting to dread football.

Tumors Stabilized

Dr. Cole, Owen's neuro-oncologist called today with good news. Owen's optic gliomas are stable. He will now move onto the maintenance phase of chemotherapy in which he will receive treatment once a month for the next ten months. He will have his next treatment on July 21st and we will get a chance to view the MRI results and talk more in depth with Dr. Cole about the next "road map." On July 17th he has another visit with Dr. Lui, the neuro-opthamologist, to check on his vision. Good news...moving onto the next step...

Waiting...

Owen had his MRI yesterday. His appointment was originally scheduled for 7:30 am but was moved to 12:30. Usually we are pretty flexible about these things, but keeping Owen content when he had to stop eating at 7am proved to be difficult. He did pretty well until he caught a glimpse of his sippy cup in the diaper bag and repeatedly kept asking for his baba. By 1pm the nurses had accessed his port and started the sedation medicine. It was harder to watch him this time. One of the medications made him very restless, so as he was lying on the stretcher fighting sleep, he was flailing his legs and arms around. We just kept trying to soothe him and it didn't take long before he was out. Joey made the comment that he looked like an angel sleeping. The MRI took about 90 minutes and then it took Owen an additional 90 minutes to wake up from the sedation. He seemed to recover pretty quickly, drinking his baba and asking "down" wanting to get down and "walk" around even though he could barely hold his head up. Later in the evening he was a little sick, but he seems more himself today. So now we are just waiting...

Happy Fourth!

10 Weeks Down!

It is truly amazing how quickly the weeks pass by. When Dr. Cole told us Owen needed to undergo ten weeks of chemotherapy, it seemed like such a long stretch of time. Well here we are. He made it through without needing any blood transfusions and only one 48 hour stay at CHOP for a fever. If his next MRI (scheduled for next week) shows a regression in the optic gliomas or if they remain stable, Owen will start the maintenance phase in which he will receive chemo once a month for ten months. If the tumors grew, he will need to continue weekly treatment for ten more weeks in which he will be given a different dosage of drugs. So next week is a big one. Hopefully this MRI will go more smoothly than the first two. This time he is old enough to have sedation through an IV instead of having to gag down the strong medicine. He also has a port now, which means he won't have to get an IV inserted, which was always extremely difficult because he has such tiny veins.

In other news, after treatment on Monday we went down to Brigantine, NJ to visit with Grandma and Pop. We had a great time at the beach. Owen loved hanging out in the sand while Joey kept trying to drag me into the 57 degree water. We are off to a Fourth of July party at the Porco's house tonight. Tomorrow...parade, pool and fireworks! Gotta love summmer!

Have a happy fourth!