Signing off........

Friday, November 1, 2013

It is with a bit of a heavy heart and tears streaming down my face.....but with a flying spirit...that I am signing off on this blog.

Dillon has requested that we no longer discuss the details, sometimes embarrassing and intensely personal, of him and his life with "the world."  I feel strongly about honoring this for my dear boy.  He has shared as much of himself as he could.  After that little (okay, HUGE) scare we had a couple of weeks ago with the biopsy....we feel like we are done....Dillon feels like he is not "that kid" any more.  He is not the kid with cancer, the sick kid, the one who stands out and is different.  He IS NOT that kid anymore.  He has reintegrated into life...he just wants to be normal, regular, ordinary,  and healthy; all of which he is accomplishing beautifully.  He asks us not to tell people that we meet about his illness.  He was in a golf camp recently and he begged us not to talk about what might be his limitations physically.  He does not want to stand out and be different and if he has physical deficits, he will just work through them, accept them, live with them...the whole world need not know.  It is an amazing place to be for him...and for me.  I truly believe now that Dillon is better, completely 100% better.....dare I saw the C word....CURED?   I don't fear relapse like I did before the biopsy was done.  It will always be in my mind, forever for the rest of my life, but now it is in the way way back of my mind...not the front, not the everyday, gut-wrenching front that it has been for the past several months.

One of Dillon's questions to me about "shutting down" the blog was....."What if something bad happens and we need to blog again?"  My immediate answer was, "Nothing bad is going to happen."  But he gave me "the look"; the look of a child who knows that bad things do happen and can happen and might happen and could happen even though they probably won't happen.  I assured him with all the love I have in this world for him that if something bad happens....we will face it, and tackle it, and handle it, and get through it just like we did this time....and if that means restarting the blog because that is what we feel is a good thing to help us through, then we will....but we need not worry about those big, dark, scary things that most probably will not happen. We have to move on and be normal, and with time this entire journey, from beginning to end, will be a distant memory in our minds and our hearts.  A little blip on the radar of life. We will be able to say.....remember when.....and it will sometimes be hard to conjure up the memories, the images, the fear, the heartache, the triumph.

With that....Dillon and I wanted to share one last amazing piece of this journey.  There is a program at many children's hospitals called Beads Of Courage.  Both UNM in Albuquerque and Children's Colorado in Denver participate in this program. Every time a child has a procedure, goes to clinic, has an appointment, gets a needle poke, has a big accomplishment, gets a scan or a test or an x-ray, has surgery, goes to the ICU, has IV meds or infusions, has chemo or radiation, had a birthday, completes a treatment cycle....they get a bead.  Each category has a specific bead color (for example anything that has to do with a needle is black, so a lab draw, a port access, an IV placement).  The big events have special handmade beads that are unique, one-of-a-kind glass beads that are made and donated to Beads of Courage by the International Society of Glass Bead Makers.  Dillon is very proud of his beads and he wanted to share this as our last post.

He has 750 beads so far.  He has 127 yellow beads for each day he was in the hospital.  There are 39 white beads for chemotherapy.  He has 13 beige beads for bone marrow aspirations and biopsies.  He has 4 surgery beads.  He has 59 beads that represent the number of days he was in isolation.  There are 76 infusion beads and an amazing 84 blood transfusion beads.  There are 53 needle poke beads and 50 tests beads, which includes x-rays, CT scans, MRIs.  He has 46 gray beads for dressing changes when he had his port and Broviac, and he has 73 blue clinic visit beads.  There are 2 handmade glass beads...one for his bone marrow transplant and one for his 1-year post transplant.  He also has 2 birthday beads (he had his 11th and 12th birthdays during this journey) and he has 2 beads that represent his transfers to ICU when he crashed and we almost lost him, once in Albuquerque and once in Denver.  Dillon has stated that he will keep these beads forever and will hand them down to his children and they to their children.  These beads represent his journey, his story, his history.

name beads from Children's Hospital Colorado in Denver

Name beads from UNM Children's Hospital in Albuquerque

Bone Marrow Transplant Bead

One-Year Post BMT bead

Some of D's favorite special beads given for various "bumps in the road".  The one with the face represents losing his hair

The only two that are not glass (sterling silver).  The acorn represents the seed that falls, and grows, and becomes a huge sturdy tree.  The duck represents strength and courage to fly high in the face of adversity.

my forever sweet boy who is strong and courageous and is ready to be normal, regular, ordinary

He is so proud of his beads.  The road was long and hard.

We will forever look at this pile of beads with love and admiration for our child, his medical team, and the community that helped our family through this journey

With that, my final thoughts go out to you....our community, our friends, our family, and complete strangers.  Each of you held us in your hearts, in your prayers, in your powerful positive light.  Your support, kindness, hope, love, strength, and never-ending devotion helped bring us to the place that we are today.   We are on the other side of this mountain, we are in the flowery meadow in the shadow of the peaks behind us and are looking back in amazement at the majesty of it all.....We love you all, we could not have done it without you....we are forever humbled and grateful.....

With the utmost love and admiration....

Shari, Dillon, Sean, and Luca