The window 2.....

Our journal has become a window into our world.  It's a window into our days, our thoughts, good, bad and indifferent.  It's a glimpse into Alexis and inspiration.  Sometimes it's light, sometimes it's dark.  Today was a dark day emotionally.  We had a clinical visit today, it went fine, although Alexis had to endure a blood draw.  She ultimately did great and it went smoothly.  But, as I sat there at the oncology office, I walked amongst children hooked up to IV drips, children waiting for blood draws, children with open ports sticking out of their bodies.  Doctors running around, etc., etc.  I began to hate this world.  The world of watching children suffer.  I ultimately have no problem with understanding an adult suffering when they've chosen actions that cause their suffering.  But to think of children having to endure this world, not the least of which is my own daughter, I began to seriously hate it.  I hate that I have to bring my son around an office like that.  He doesn't deserve to have to see or witness that.  I hate that our entire life has been thoroughly uprooted to the extent that we have become different people.  Sometimes the people we have become are not who we would have chosen to be.  I hate that I have to read about another child passing, or another child struggling.  I hate that tomorrow I may have to worry more about my daughter not being here.  Our life was not difficult by any means before April 11, 2008, although we may have felt that way.  With that said, we came and went as we pleased, traveling, enjoying everything.  Hate is often a strong word, and I certainly do not feel that way frequently.  But today it struck me hard.  There isn't a single day, regardless of whether we spend it on a beach or doing something else that brings significant joy to Alexis that we are able to outrun this world.  It's not possible.  Most days it's less of a struggle.  Today was not one of those days.  It just gets triggered. 

The night has hit though, and so, we try and unwind to the extent that we can.  It's not always possible and sometimes the next day is a continuation of the previous one.  With the holiday weekend approaching, I'm hoping that we can in some fashion find that enjoyment that can fill our days. 

We have no specific plans.  We just plan on taking it as it comes, like we've learned to do for a while now.  The day started with a swim lesson for Alexis.  She had a good time and spent a lot of time with the teacher.  She loves the water and enjoyed swimming around to grab things in the pool.  The appointment went well today.  Her counts look o.k. and the docs think that she looks good.  We continue to just push on and do what we're doing.  The blood draw was quick and Alexis did awesome.  It was obviously not without crying, but the anticipation was far worse than the actual stick.  Alexis was able to do plenty of art projects and play in a tent that is set up by one of the art areas.  She enjoys hanging out in it and shutting all the flaps so nobody can find her.  Afterwards, we headed out to lunch and then Neely ran Gabe to his 6 month appointment.  Alexis and I hung out and played outside.  She rode her bike around the neighborhood, heading down the hills at breakneck speed.  Gabe got his own little pokes with a couple of wonderful vaccinations.  Dinner followed and then a little earlier bed time given that we scrapped the nap for the day due to the later doc appointment. 

This has been a bad cycle for the last 2 weeks in this community.  The dust is not settling and I don't know if it will any time soon.  The key in my opinion is to raise the type of awareness that other high profile diseases get.  It's a difficult proposition though, try to convince big donors and the masses that 200 children matter.  It's not an easy sale.  With that said, there are plenty of places to turn.  People, organizations, families, etc., who are making a difference.  Organizations like The Cure Starts Now, Just One More Day etc., who are trying to fight.  The Cure Starts Now hopes to raise a million dollars this year in an effort to win this fight.  There are some that say that throwing money around isn't the answer.  I don't disagree.  But, I am also aware and firmly believe that money talks and it speaks to a great many people in this fight.  It takes money to conduct research and fund new protocols.  If we wait for the government to do something, we might as well just fold.  Frankly, I can't look my daughter in the eye and take that path.

For those of you in Virginia, please visit the following link: http://www.helpcancerkids.org/  They are making a push to obtain license plates for childhood cancer and hopefully raise money in the process.  Please try to help them along on this mission.  Again, awareness is key to this battle.

Thank you all for your continued prayers and thoughts.  We welcome them with open arms.

Love,

Jon, Neely, the brave Alexis and little (he is in the 5th %) Gabe