Today he went in for his typical off week lab checks. We were also a bit concerned about his "Button." He's always complaining about us accessing it, but it never hurt until this morning. It was sensitive to touch and a little red around the edges. Think of an infected earring, or maybe don't, just trust me! He ran a slight temp, but nothing too alarming. He just felt kind of crappy. And honestly, I don't blame him. His labs were OK, not good/not bad The thought processes is that he will need some sort of transfusion on Thursday. But we were told to expect this, and we do, so no big deal right now.
This was the Blaise I expected to see everyday for the next 9 months. I am honestly so extremely happy that this is truly the first time he has ever felt bad, outside of the first week home after surgery/chemo round 1. As I was leaving school today, I was telling a co-worker how he's had many more happy days than sad days. It really is unbelievable that we're a month into this journey and today is the first time he has not felt like himself the whole day.
One thing we have noticed is that he is not sleeping as soundly as he use to. He is not waking up, nor is he up all night. We are noticing him whining in his sleep. I think he is having bad dreams about his toys running away, or losing in musical chairs like Charlie Brown. Who knows? We don't think he is in pain, because when he is in pain, you know it. We find him balled up on the floor by his door, and he his inconsolable. Blaise in pain is something you know. These moments are not Blaise in pain, but they are not typical Blaise.
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| No pain here, look at this smile |
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| Just your average happy hipster |
Thanks again...
Over the past week we've had some incredible things happen for us. Again, such an overwhelming feeling. Last week, a young student from Cardinal Foley School dropped off a check and some gift cards for us. Our basement is being transformed into a room for Blaise to enjoy after his surgery. I feel like I am on Extreme Makeover Home Edition! We've received tons of gifts and support, like Blaise tumblers...
This evening I received an email from the mother of young man coached 3 years ago. I can't get over the out pouring of love and support. I am not sure how we got so lucky, but its unbelievable. Thank you again! Thank you so much!
Giving Back
As a way of giving back, my brother and I were talking about doing the American Cancer Society ride to the shore this June. I've done this ride before with my dad, and its not the most challenging ride and the support all the way down is amazing. The ride is June 12, and it starts at the Ben Franklin Bridge and ends in AC. Let me know if your interested in riding. Its $60 to register (I think) and each rider must fundraiser $100, so it would cost $160 to sign up today. If we get enough interest, we'll start a team and ride for Blaise as a group! Check it out!
Oh Wait!
I forgot to add a funny story from last week. While riding into his second day of chemo, Blaise got sick in the car and puked all over his car seat in West Philly. Annie is really getting this stay at home thing down, and had a spare set of clothes waiting for him. However, his car seat was a mess, so Blaise rode shotgun down Market Street to CHOP!
Later that night, his car seat still not usable, I placed him in the back seat (a bit safer) and Annie drove home from her parents. They were following me home, when I lost Annie on Lawrence Road. When she pulled in the driveway I was waiting outside to see what happened and Blaise climbed out of the front seat. He had gotten out of the seat belt on Lawrence Road, and climbed back into the front seat! Annie carefully got him home, and he is safely back in his vomit free car seat, so do not call child protective services on us!
Blaise can't wait for the games Thursday! Hopefully, we'll get another update in before then! Thanks again!
