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Here are a few updates on Trey (and the family) and the life of dealing with a child who has been diagnosed with terminal cancer.

1.  His most recent scan came back (for one year now) showing that the cancer has not grown.

2.  Rachel and I do not get as excited as everyone else at the results.  Not that we don’t want it to be no growth, obviously quite the contrary.  For us, we know that he is fine regardless of what the scan says.  We get to see him everyday and know that if the cancer has spread it isn’t effecting him in any way.  We also know that, according  to doctors, that at some point it won’t be ok.

3.  Now that he is completely potty trained (night time was the last stand) his new thing is getting up, going to the bathroom (in the middle of the night) and then standing outside our door without coming in.  He stands there and says, “mommy…mommy…mommy.”  One of us gets up and we then cover him in his bed with his blankets, turn on his music, and go back to bed.  Before bed we prompt him by saying, “Trey, it’s great that you’re a big boy now.  You don’t need to wake mommy and daddy when you go to the potty in the middle of the night.”  He always replies, “But I have to.”  Ok, glad we had that talk.  Yep, there will be a day where I would give anything to hear that sweet sweet voice.  Yep, we don’t want to hear it at 3:30 in the morning right now.  Yep, that’s confusing.

4.  My dad bought us a swing set for Joe and Bella’s birthday.  Awfully kind of him, very generous.  However, on one level, thanks for the project dad.  I now have three kids asking me every day if I magically put it together over night.  One in general, yeah…Trey, wants to play on it…NOW.  Forget it’s 100 simple steps, 4 huge holes to be dug, concrete poured and dried away from being ready to be used.  He wants it now.  Lastly, if Trey does pass we will have a play set that is a good bit too small for Joe and Bella.  This is how you think as a parent of a terminally ill child.

5.   Bella misses having food dropped off at our house every day.  I explained that people did that when Trey was sicker and in the hospital.  She replied, “well, if he gets sick again and ends up in the hospital maybe we can have food delivered again.”  Yes Bella, that would be one bonus if that happens.

6.  Trey very often tells us that he is going to leave and go to Toys R Us and not to worry, he can reach the pedals.

7.  He is so well…for now, that it is increasingly difficult to remember his ultimate diagnosis.  Yes, we have today and it’s all we really have…any of us.  However, even though each day with him may be his last before he becomes “symptomatic” (as the doctors put it) it is harder and harder to imagine what that will look like or that it is coming at all.  I realized this morning that as much as you don’t want to dwell or fixate on what could happen you…I also don’t want to ignore it either.  To do that would exponentially heighten the eventual pain we would/will feel when/if it happens.  It would almost be as bad as when he was first diagnosed.  You really don’t want to go “there” again.  Granted, you can’t worry about what you can’t control and don’t want to miss out on today either.  Thus the mind games that you play when you have a terminally ill diagnosed child.

8.  When we say that, besides the cancer, he is a normal almost 5 year old boy we really mean it.  Some people think he is hanging on by a thread.  No, that’s us.  He’s perfectly fine, we’re the ones who are exhausted from raising him and his siblings…like any other parent.

9.  If Joe and Bella are effected negatively in any way through this it’s pretty veiled for now.  If anything, Joe and can be pretty mean and dismissive (toward Trey and Bella), Bella goes straight to anger (mostly at Trey).  The three do love each other and that does show itself every day and they are siblings so a lot of all of that is normal.  However, I do try to monitor what is going on in their heads and in their hearts, just to stay ahead of it.

10.  Rachel and I continue to push on and make sure each other is ok and well loved/supported.

That’s it for now.  Thanks for checking in.

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