Day 71.....and day 14590

Wednesday, November 28, 2012

My day 14,590......My 40th Birthday.  I was surprised by an abundance of emails and texts and phone calls from family and friends.  Thank you everyone for that....it was special and fun!!!  My sweet husband had a birthday cake delivered to the apartment.  The kids were in on it and I had NO idea....they are so sneaky.  We had a lovely dinner of sushi takeout from Whole Foods and a movie in our snug little apartment.  Another surprise came when we looked out the window and every tree surrounding Brent's place was ablaze with a multitude of colorful Christmas lights.  A crew of guys worked on it all day long and it is spectacular.  I had a lovely day.  I was so at peace and had such joy in my heart to have my boys with me all day.  They were sweet and loving (as usual).  I am feeling good.  I feel stable.  I am drinking my smoothies, Luca and I are exercising a bit.  My life feels sorta "normal" right now....waking up to whispering kids in the other room, everyone wanting something different for meals and having to negotiate, the laughing, the bickering, the chaos (making dinner, one kid in the shower, one doing something else and both needing help at the same time, and the phone ringing all at the same time)....that normal mother stuff feels SOOOOO good!!!  I have had some time to read since Luca got here because he keeps Dillon busy.  The boys are also engaged in helping me with the cleaning....we each have specific job assignments.  We are also doing some schooling stuff.  Luca is working hard on his reading.  Dillon is reading and doing cross word puzzles for vocabulary and spelling work.  This afternoon we are going to work on spelling, grammar, and penmanship in the form of thank you notes and letters to friends.  All of this makes me feel like my old self, like my family is indeed intact and moving along just as we would be if we were at home.  It is such a relief to my heart and the best gift I could have received for my day of birth :)))

Sean sent a chocolate cake with Cherry filling....yummmmmmm!!!!!

We had a big day yesterday in the clinic.  You remember Dillon had a PET/CT.  The outcome of that was SPECTACULAR, as expected.  It was completely clear....no evidence of cancer or other questionable activity.  So, ....our boy is CLEAR and HEALTHY.

The little bump (you know we just had to have something to keep it interesting...wink wink).   His blood work from Monday showed a huge amount of a virus called cytomegalovirus.  It is another one of those viruses that most of us have in our systems and with the steroids for the GVH (which lowers his immune system function) this has reared its ugly head.  He began treatment immediately, which is a very powerful antiviral.  They infused the first does yesterday in clinic after his PET/CT scan and they were able to order it for us to do at home twice a day for a couple of weeks.  They caught it early and the treatment began right away, so hopefully it will be controlled.  When this virus is not controlled it can lodge in the lungs, cause serious pneumonia and lung collapse and, worse case scenario is that it can be fatal. It is very serious, we are watching Dillon's symptoms very very closely, but hopefully jumping on the treatment early will avoid all of those complications. Only time shall tell.

I wanted to share a really cute picture of Dillon....not only does he look happy but you can see the little fuzzy hair that is coming in on his head.  His hair gets "longer" or more dense every single day.  Seriously...he gets up in the morning looking different every day.   His lashes and brows have fully re-grown so his face looks more like himself.  The other thing that is finally growing are his fingernails.  They were so severely damaged from the chemo that they may fall off but the part up next to his cuticle is growing in healthy.

Look at all that hair...and the brows and lashes are so full and dark!

can you see that white ridge up by the top part of the nail? That is were the old nail may fall off.

This ridge is very pronounced...can you see it about 1/3 of the way down from the cuticle?

 I gotta go wrangle these boys into the shower before we head out for a movie this morning.  Did you know that if you go to a movie at 11 a.m. on a tuesday or thursday you are likely to be one of only a handful of people in the theater???

Nana and Grampy arrive today for the weekend.  They are so SUPER excited to see the new and improved Dillon without the nausea and vomiting and with the ability to eat, laugh, walk.....we will enjoy some holiday activities and some lovely meals together.