Alex's Birthday is Coming!

Alex's birthday is coming right up!  We are so excited and want it to be the best birthday ever!  I have been talking with Alex trying to see exactly what he wants, where he wants to go and what food he'll want for his special birthday dinner.  The only info I could get out of him is that he wants to go to Planet Play and do the mini-golf there.  It's a black light course so everything glows. So that's what we were planning on doing up until yesterday.  He has changed his mind and wants to just stay home and just have family over and play games. I was a little disappointed because I want him to go and have fun and experience as much as possible.  So I asked him why he changed his mind and he said that he is tired and wants to wait til he feels better to go to Planet Play. I know it doesn't matter really what we do or where we go just as long as we are all together and Alex is enjoying himself but I can't help worrying and panicking what if the way he feels now is the new good.  What if he never goes to Planet Play or any other fun kid place? He has to.  There is already so much he is missing out on and I can't stand the thought of him missing out on things to come.

Today was a clinic day and it went really well.  Alex had blood drawn and a check up.  We also talked about the chemo he will be starting.  He is starting what they call maintenance.  He will be taking the same oral chemo pills as before but the dosage will be a little more than twice as strong. Alex will only have to take it 1 week out of every month.  They are also adding a different oral chemo pill to the mix.  They are expecting his blood counts to drop very low about the third week of maintenance, then should gradually come back up.  Then it will be time to start the chemo again.

A great friend of mine, who has been an amazing support let me borrow a book called Running with Angels. In it there is a woman describing what it's like having a disabled child and I felt I could relate to it, although I am not quite there but hope to be able to one day.
She says: I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy.  you buy a bunch of guide books and make your wonderful plans/  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You learn some handy phrases in Italian.  It's all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, Welcome to Holland.
Holland?!?! you say.  What do you mean Holland??  I signed up for Italy!  I'm suppose to be in Italy.  All my life I've dreamed of going to Italy.
But there's been a change in the flight plan.  They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence,famine and disease.  It's just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you must meet a whole new group of people you would never have met.
It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills and Holland has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say,  Yes, that's where I was supposed to go.  That's what I had planned.
And the pain of that will never, ever,ever go away because the loss of that dream is a very very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Although I know I will never be happy about being in my "Holland" I have all ready seen some pretty amazing things. We have such a wonderful family of support.  They have literally stopped what's going on in their own lives and have reached out to help.  We have seen strangers who have lifted our spirits by cheering Alex on and donating.  We have come to recognize that there are people in our lives that we were meant to know, so we could be loved and supported through this. Though we have seen some wonderful things in "Holland" we are hoping we can catch another flight to Italy and we will be on the first plane out of here!

Finally some good news

Alex got his eyes checked to make sure his enlarged ventricles are not causing damage to his eyes or optic nerves. The doctor saidhis eyes look great and he has 20/20 vision!

Hospital stay...

Alex has spent the last 24 hours at Primary Children's Hospital. He had some increased headaches and nausea along with a high fever. They did an MRI which was going to happen on Thursday anyway. It looks like there is some decrease in the size of the tumor itself but the ventricles in the brain are enlarged,  causing pressure resulting in the headaches and nausea. He has been on a hefty dose of steroids which has helped relieved some pressure and antibiotics that have taken care of the fever. Today he feels much better and we are just waiting to be released which could be soon or not. You never know what to expect here.

Alex wore his cape to clinic, he said it makes him more brave:)

Thursday we had clinic.  It was a mostly great day.  Alex was nervous that he would have to have blood drawn and since his PICC line was removed last clinic day he would have to get poked and he was not looking forward to it.  He wore his special cape saying it makes him more brave.  Once they decided they didn't need blood this time, Alex immediately relaxed and made himself quite at home.  He suddenly had tons of energy.  Energy he hasn't had in a long time!  Alex was all over the place, in and out of the room, taking pictures with my phone, banging the oxygen tank with the bed rails. Before all this tumor stuff I would have been so disappointed with that behavior and would made him sit still.  But on Thursday I was so happy to see it!  He was acting like an active 6 year old! I have missed that so much!  He did so good we get next week off!
So the part of the day that wasn't so great is that Alex has bronchitis and is starting to get junk in his lungs. They did a chest x-ray and are pretty sure it is just from the virus and not from aspirating.  So that's good news.  He is on some antibiotics and seems to be doing better.  Alex's oncologist was showing him the x-ray pointing out his heart, ribs, collarbones and stomach.  Alex said hey I see my ham sandwich I just ate.  It was so funny and so like Alex!

Angel Fight

This past week a group of angels came together to fight for Alex.  This amazing group of athletes will forever be in our hearts.  Thank you Jake and Erin Kobielusz, Garrett Smith and Matt Sweatfield for everything you have done for our hero and our family.  Thank you CrossFit 22 and CrossFit Park City for hosting this event.  Thank you DFS Lifestyle.  Thank you to all the athletes that participated and to all the individuals, friends and family that came out to show support and donate.  Thank you to all the businesses that donated.  I wish I could name all of you.  Thank you Andrea Child for taking these wonderful photos.  This event was so special for Alex and the Terry Family in so many ways.  We feel so much love.  While Alex's illness has changed us forever, this army of angels has inspired us to be better people.  Thank you all...

"Angel Fight"  CrossFit 22 Feb. 2, 2013

"Throw down for Alex"  CrossFit Park City Jan 29, 2013