Day 137...Family and Fun

Sunday, February 3, 2013

I completely overlooked the fact that I did not give you guys an update about this week's clinic visit.  Sorry about that.  Everything is stable!!  We are carefully watching a slow trend of liver function possibly becoming abnormal...which is technically normal, or rather expected from time to time, because of all the meds that are flowing through the liver.  Sometimes they discontinue or change certain meds if the liver begins to "malfunction."  We are not there yet, and hopefully with the expected upcoming med tapers and discontinuations over the next weeks his liver will rebound without any additional therapy needed.

Two major events happened in the medication world this week.  Dillon is now off of ALL of the mouth care regimen that he has been on since transplant.  You know the celebration over the nose spray....well this was not quite as big of a deal but he is happy to mark one more thing off the list of stuff he has to do each day.  Obviously, he still brushes 2 to 3 times a day but the extra mouthwash and swishes are done!!!!  Dillon has begun his 16-week taper of the final immunosuppressive/anti-rejection medication.  This is a major milestone.  It means his body is ready to slowly begin putting up its own fight against invaders.  The taper is very slow so that the immune system has time to ramp itself up. At the end of the taper, which ends in April, Dillon's immune system will be a bit stronger and more functional that it is now.  Yeah!!!!

Luca flew on the airplane by himself for the first time on Thursday.  He was so super excited and so mature.  A funny scene of Luca counseling my mom on where her car was parked at the Albuquerque airport.  He really wanted to make sure that Nana could find her way back to her car easily.   He came off the plane on our end looking like the coolest most stylish 8-year-old I have ever seen.  He had picked his favorite outfit several days before and had it hanging in his closet in preparation for his trip (his fear was that if his dad did not do laundry on the correct day then his outfit would be dirty on the day of departure, so he hung it in his closet and there it waited until the appointed day, shoes and all....how cool is that??).  Luca refused to bring any toys, games, books, anything onto the airplane.  He insisted that he was just going to look out the window and enjoy the ride.  He sat next to an older lady who was quite smitten with the little fellow.  She gave him her peanuts and an extra coke, and I am sure they chatted about random things the entire flight.  The lady waved goodbye to him in the airport and she gave me a huge grin with a double thumbs up....I think she enjoyed her time with Luca :))

Sean arrived Friday midday.  I blinked and they were both gone.....Sunday arrived so fast.  I HATE THAT!!!!

I wanted to share a basketball game that happened on Friday morning after the Brent's Place community breakfast.  Notice that Dillon is without his mask.  It was a beautiful day outside and Dillon asked if he could please please please play this game without the mask (it is so hot and hard to breathe).  I relented.....the kid has to have some normal moments, which I felt outweighed the risks of him being outside without a mask for 30 minutes or so.  He also pulled his sleeves up to catch those rays and get his body pumping with vitamin D.  Our theory is that if he gets more vitamin D from sun than the doctor is expecting, then maybe Dillon can stop taking the huge dose of vitamin D via pill sooner rather than later.  We will see if our little experiment works out. :))

Dillon going for a basket

Luca doing tricks with Sean from Brent's Place

Luca trying to guard his brother...but Dillon sneaks around him

Quick pill taking break (Luca brought his vitamins down to take with Dillon so he wouldn't be the only one taking pills outside )

The upcoming week is another Wednesday clinic visit and a followup PET/CT scan.  I think I talked before about how this is just part of the protocol and basically they are making sure there are no active areas of cancer cells throughout Dillon's entire body.  This test will happen every 3 months for the first year and then every 6 months until year 3 or 5 (I cannot remember that detail for some reason....maybe it is just too far off into the future for my brain to keep on hand at the moment).

Oh yeah....I almost forgot.....our sports extravaganza continues.  We got to go to an NHL (National Hockey Leauge) game.  The Colorado Avalanche versus the Edmonton Oilers. Our seats were in what they call a "private suite".  We had to scan our tickets at the door that was labeled "Suite 60."  We walk in and there is a little kitchen/bar area and 12 cushy seats in this little room that opened up to the ice with a fantastic view.  No the drinks and the snacks were not free, but we had a blast (especially Luca, of course, who is now more committed than ever to his future hockey career).  Dillon and I now have a running joke about how many times we can actually go to different events at the Pepsi Center.  Now every time the phone rings in the apartment we look at each other and laugh because we just know it is going to be someone offering us tickets to some sporting event....weeeeeee....fun times!!!!