July 4th brings a popular saying to 67th street in Sea Isle, "the summer is half over." I always heard my grandfather say it, and I assume is comes from his mom, but it is repeated every July 4th all day at the Pink House. But the summer is only beginning. The summer of Blaise is just starting, and today was good day to kick that off!
While today was overall happy, Blaise did not have a good day. We should have expected it, it is 7 days since his last dose of chemo and his counts are all but gone now. I think this was his second set back since treatment started. I say setback because we had to cancel our plans to see the Davis kids of Scranton. We've talking about this trip since last week and Blaise and Lucy were so excited, but it did not work out. We'll get there, no worries!
Where Have We Been?
Honestly, we just have not had time to blog. We've been carting Blaise around to everything and anything in order to make his past 6 weeks feel normal. His cast is slowing him down, and sometimes bringing him down, but overall he really has adjusted to it, it has been awesome to watch.
The best day was when he came scooting down the hallway at 6:00 am and kicked opened our bedroom door and exclaimed, "I want to go to the beach!"
So we obliged and took him to the beach! The beach you say? How does a kid with a full leg cast enjoy the beach. I am not sure, but he does. A very special shout out to the SIC Beach Patrol as well. We got to talking to them because they provide beach wheelchairs for free for those who need them. The problem is they only have 8 chairs, and they are booked through August with rentals. So each morning down the shore, I would call at 11:00 and talk to one of the guys at the headquarters asking for a chair. We were lucky, we were able to get one everyday except one day...
I am not even sure I am supposed to be speaking about this, but I need to share the story. We called last Sunday, and we could not get a chair. We thought, no big deal! But then we got a call back, saying come at 11:30. The guy told us to meet him on the street and we'll take a ride. SUPER SHADY! But he took us to an undisclosed location and provided us with a pediatric chair we could use for the summer. We needed to fix it a bit, air in the tires and some minor cleaning. But we have a chair for the season! I cannot say enough about the Beach Patrol guys. I knew that back in the day when Michael and I would hang out with our 65th Street lifeguards, Gee and Todd that they were cool guys. But these past few weeks reaffirmed that! the SIC Beach Patrol is awesome, and went out of their way, above and beyond the call, to make sure Blaise could enjoy the beach! Thank You!
Thank You!
Annie has made some incredible connections with her coworkers at CHOP over the years. And no where was that more evident than the other night at The Taproom. The unit showed up in full force to raise money for Blaise. People donated baskets for raffles, one person donated a week at their shore house! It was a great night, with great food and good people. Thank you to everyone that showed up.
A special thank though goes to everyone favorite male nurse, Denny. Denny, and his lovely wife Cindy, threw this together and made it all happen. Blaise and Denny have special connection too. It pretty funny, whenever a doctor comes into the room to check on Blaise he asks them to leave and bring Denny back. Denny took the lead when Blaise had that rough night about a month ago. And Denny has been a good knowledgeable voice for Annie to bounce her ideas off.
I need to thank my friend from work too. He gave me an old bike trailer to ride the kids around and they have so much fun in it. Every morning Lucy asks to go for a ride, and every morning we do. Her next questions is if Blaise can come too! I wanted one of these for a while, and I am so glad we have one now, and they could not be more happy with it! Thanks Larry!
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| Sorry for this visual... |
So Why are We So Busy?
Basically Annie has been going crazy thinking that Blaise is soooo far behind his peers with school related stuff. So she has been forcing him to write his letters all day every day. Its like when my mom use to do our homework with us as kids. There is a lot of tears, and yelling. But something is getting done. He's trying, and he'll be fine. Ms. Dottie gave us a binder of all the projects the kids are doing, so Annie is going through that! My cousin, also gave us her 1st grade stuff too. He is 1 year in September away from school, so no rush either! And at this rate, he'll be advanced by then anyway!
But here is the real reason we have not been blogging. In an effort to get out a bit more, Annie and I have picked up running. Now stop laughing! But because we cannot run together, it takes twice as long and leaves little time for other things. And by twice as long, its probably four times as long as a normal runner... But we have some goals set, and came up with another idea too. We'll be getting a team together for the CHOP Parkway Run in September. Its a run/walk, no worries. So keep you eyes on the look out for another team Beat it Blaise going out!
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| Lucy also wants to run! |
So a pretty blah day today. Blaise already seems to be recovering. We saw signs of his normal self at bed time! The cast comes off on Thursday! I repeat the cast comes off on Thursday. Still a long road ahead, but this is a big milestone on the treatment road map! A few more cycles of chemo, 3 five day cycles and 2 2 day cycles. And preliminary plans are in the works for a post chemo celebration in October. Blaise still has a long road a head of him, but the summer is here and the living is easy!
