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!