Meet Carter

If you read this blog you will know that we have a very special person in our lives by the name of Destiny.  She helps us with Carter twice a week and is really just plain and simply AWESOME!  Carter absoulutley loves her and so do we. So we were so excited to hear that she was going to partake in the First Ever Love, Hope, Strength Pikes Peak Rocks.  What is that you ask… well in a nutshell It a really kick ass charity event to fight cancer and to create more Bone Marrow Donors and they do this through music and mountain climbing.  Rock & Roll & Rock Climbing…pretty fucking cool! A

Any way… she needs to raise a $1000 for the event and we are hoping that if you can that maybe you can chip a couple of bucks through her web site all for a great cause.  Here is her link where you can learn more about Destiny and her goal http://www.lovehopestrength.org/site/destiny-jara/

Also, you don’t ahve to hike the mountain to be involved you can drive to the top of Pikes Peak and they will have a concert at the end of the trek for more information on the event check this out:  www.lovehopestrength.org   We are planning on taking the cog train up that day and it will be so much fun, come out and join us!

funny video of Carter who now knows his nose!

A quick post… I guess Carter new that it was time to get that pesky and very high-maintenance broviac line out. FYI.. the broviac line was one of two lines he had intially put in for all the infusions (including the BMT) and blood draws and medicine administered through, he had lost his 1st line when it burst because of a nasty blockage the nursing staff was unable to block.  We discovered on Monday that it had been pulled loose and of course we were worried sick… but since he was down to his last IVIG infusion they decided to take it out.  So almost 16 months later of daily cleaning, some scary blockage moments and a few “Thank God We Have That”, he is free from his lines.

Picture updates…. I invite you all to friend me on my facebook page for regular Carter photo updates… I apologize to some of you that might be checking in here for them as it is a little time consuming to put them up here and I have had some people who have used some of his photos with out my permission. But don’t worry I will go through and pick out some of the best and place them here shortly.  You can also email me to request some if you like and I would be more than happy to send them out to you.

We continue to believe that Carter is truly a one-in-a-billion little boy, and what we found out yesterday, we have no reason to delineate from that idea.

Since Carter’s procedures last week, we had noticed that he just wasn’t his same old self.  He was lethargic, coughing a lot, and wasn’t flashing that trade mark smile like he normally does. So Deni took him to Children’s to get checked out… well more bad news.. Carter had caught a bug while in the hospital… Yuck! More treatment was in his future.  Why do we always have to hear bad news?  Can we get a damn break? Well moments later after his antibiotics were done being administered and just before going to get a chest x-ray, some damn good news came our way from some results from a skin biopsy that is done to measure the severity of his I-Cell Disease… this is what it said…

“Electro microscope examination of this skin biopsy specimen reveals the presence within multiple cell types of a metabolic storage product, of similar appearance (now here is where it gets good!) BUT SEEMINGLY LESSER ABUNDANCE THAN THAT OBSERVED IN A PREVIOUS SPECIMEN FROM THIS PATIENT.!!!

another paragraph stated:

“The ultrastructural findings are similar, but slightly decreased in severity, in comparison to the prior biopsy material…”

So… Yes you are reading this right… Carter’s condition is decreasing in severity and has Dr. Giller and his crew very excited and said this is probably the best case scenario for him at this time! We must realize that this is by no means a cure, but considering we went through all this for any ray of hope that we can make him better, HOPE has shined through and it feels FUCKING AWESOME! I’m so proud…I’m so proud!

Deni’s 35th Birthday is today and I don’t think she could be any happier with this great present given to her by Carter.  He is such a strong, courageous little warrior that is just defying all odds that he faces. We want to thank you all for your continued prayers as we have faith that this is helping him and us.