Just a quick post to remind myself I need to expand on this later since Im still trying to sort out  what this day means for us.  Joaquin had his last spinal chemotherapy yesterday.  His labs look good and his spinal fluid came back clean of blasts. Even though Joaquin achieved remission almost 3 years ago shortly after induction, this is the true "test" to see if his body can function normally without the help of chemotherapy which represses his body's propensity to make cancer cells.  I hear the next year will be rough.  Today we are trying to rejoice in the idea that he is cancer free on this day and leave it at that.  We have hope!

This is the one and ONLY picture that I have of Joaquin bald.  I'm only posting it now because I've barely learned to look at it and not feel like my heart is being ripped out. I don't think he even noticed, much.

Joaquin's chart as of December.  Doubles as a doorstop.  Only 9 more chemos to go!!
September 2012-end date

2011 46 Mommas Shave for the Brave from Jennifer von Elling on Vimeo.

I did it!! Check me out at about 2:05.  Yeah so, they didn't show my interview because I was rambling like an idiot.  However, I have evidence here that I actually did travel to Washington DC to shave my head in the name of pediatric cancer research.


I also went to Capitol Hill and got the opportunity to meet with legislative reps in an effort to draw more awareness:  Kids get cancer too.  We need new medicines that are more effective in fighting cancer with less toxic side effects.

The best part was spending a few days with mommas like me that have a fire lit under them to do ANYTHING that can potentially help find a cure.  I remember reading something a man shaving for St. Baldricks once said:  "If me shaving my head, raises the $1 for THE petri dish that finds the cure for cancer, then it's the least I can do". <3

This is what happens at bath time after an increase in chemotherapy medicines.  As if Joaquin losing his hair once isn't bad enough!  Since his treatment is 3 years long, he is expected to lose his hair several more times.  It is not something a mother can ever get accustomed to.  When the hair begins to thin again, it becomes a constant reminder of the cancer his little body is trying to fight.  My first instinct is to shave my own head.  It gives me a sense of control over something I have no power over.  This time rather than doing it in a Britney Spears-esque manner, I will go to Washington DC and do it with 46 other mommas that fight for their children too.  It is a privilege and honor to be one of these courageous mommas.  SEPTEMBER 21..stay tuned.

Back to School Blues...

The back to school feeling the past few years has been awfully bittersweet.  As I see children walking to school down our street, I get the excited fall-is-coming-new-crayons excitement.  Then I remember that my boys wont get that sense of first day of school excitement. At least not for awhile.  I feel the constant urge to remind myself that LIVING is much more about spending time with our loved ones and treasuring the precious moments we have together in health. 


School is only one aspect of life.  On this day we are celebrating our blessing in God allowing us to keep Joaquin.  Keeping Rafael at home with Joaquin has taught him how to be of service to his brother, patience, and the appreciation of the little things like marbles and making pudding.  I hope I am properly taking advantage of my time with the two of them.  The extra time I have them at home is a privilege NOT a burden.  Even if sometimes I like the idea of shooing them off on a bus and having a soap marathon on t.v. while eating chocolate and sipping wine. HA!  I love my boys.  And now, I patiently wait for my box of homeschool goodies to come in the mail. :)

random!

Nachooooooooooo!

Victory

Mucha Lucha

bottoms up

Beastie Boys

Brothers

Clinic companions: conejito knuffle and snoopy