April 25, 2010...that is our date for "end of treatment"....although John thinks this will somehow jinx us I must say.....we are officially LESS than a year out!!! WOW!!!! In a 3.5 year treatment you think will NEVER end, to be less than a year out is a real joy!! So I am now dreaming of our "end of treatment party".....I am envisioning a beach house party...everyone needs to save the date....this will be the event of the century!!! (At least in the Crowley household it will be :)

I am trying my best not to freak out over the swine flu.....I think a pandemic is scary for everyone...but for someone with a child that is immunocompromised, it is a terrifying thing...I will be asking lots of questions tomorrow at the onc office...Iam feeling as though our entire household needs to "hold up" and not go anywhere until this is all over....

The older boys went to the pediatrician's office this week, all is fine with them. I have to say that I had very little sympathy when the boys freaked out over getting a finger poke...after all that Eli has gone through, I just don't see what the big deal is over a finger poke!! Geez!! We also found out that Jacob needs glasses. I noticed this past weekend as he was watching the TV in the car that he was squinting, so I took him in. He has needed them for a while, but no one has noticed....I am a bad, bad mommy!!!

We go in tomorrow for chemo and an LP. Please pray that things continue to go well for us.

Thanks for checking in. I will let everyone know how tomorrow goes.

Maria

I am thankful for the fact that we live in the US and have such wonderful healthcare!!

I cannot believe it has been so long since I have written. I must apologize for that. We are staying so busy just living our wonderful lives, I must say that coming back here at times seems to bring me back just a little and I think I might have been avoiding that. Silly, but true. Jacob is playing soccer, baseball, and swimming. Sam is playing soccer and swimming...and Eli is "playing" soccer. It is more like he is playing superheroes on the field while chasing a ball up and down the field, but who is picky???

Eli is continuing to thrive. We haven't had any issues really. His IGG level was low so we did get an IVIG treatment last week at clinic. As usual, the pharmacy somehow screwed things up so it took from 8am to 11:30 for them to get it up to the floor, then a 3.5 hr transfusion...so it was an all day affair. At this point I think I am almost accustomed to the mess ups, so I take them in stride. We had packed to stay all day so it was no big deal. Eli has his friends and toys there, so he really has a good time usually. His counts have remained in the acceptable level, so we haven't increased or decreased his chemo. He has been steady at 125% now since October, so that is encouraging.

We go in on the 30th for his LP and chemo, and pentamadine again. Please say a little prayer on Thursday that we get in to get our procedure relatively quickly. Out of everything we go through, these days are the most trying because of the no eating/drinking all morning until he gets the "sleepy medicine" and then wakes up. Although I think he is most patient for being only 4, it is still no fun for either of us.

April 25 will be T minus 1 year and counting...yes, we will be counting down to actually being FINISHED with our 3.5yr treatment!!! I cannot believe we have come this far, and I cannot believe that we are here....It is by the grace of God that my family is still so happy and relatively unharmed by all of this. As a friend said today, Eli will probably remember very little of any of this. Although I know that John and I will carry the scars in our hearts forever....he will forget, and become a strong and faithful man because of what he has endured. I feel that is how my other boys see things too. God will give us strength to get through it, even if it is so hard we wonder how we will do it....this is proof of that for them and for us.

A little girl that lives here on Daniel Island, Ella King, was diagnosed last week with ALL. Horrible. She is 5 (I think) and is a beautiful little girl with Down's Syndrome. Apparently, many children with Down's get leukemia....I am not sure why. Please pray for this family as they go through the beginnings of treatment. I still get so angry when I hear of another little one with this beast of a a disease....and again...why aren't people screaming at the top of their lungs that we MUST find an answer to Childhood Cancers!! No child should have to endure this.

Thanks for checking in...I will do better about posting here and keeping everyone up to speed..

Maria

I am thankful that we have only one year left of treatment!!!