Happy Summer...and bone marrow or blood donataion

Sunday, July 28, 2013

Hello everyone.  Dillon is chugging along, slowly but surely climbing this, what seemed like, insurmountable mountain.  He is nearing the top with only occasional rain storms and tripping over rocks (climbing a mountain is like that, right.....two steps up, rest, one step back). :))

Folks are still fully engaged with us in our journey and continue to ask..."What can we do to help?"

I am writing today with an answer to that question......

#1:  Sign up to be a bone marrow donor.  There are two ways that people can do this....as an adult from age 18 to 61 you can sign up to donate.  The other way is for expectant parents to donate the umbilical cord blood from their newborn baby.  It is really easy to sign up and on the website below they give all the information you need regarding the process of donating.  I know it sounds scary and huge....but you can literally save a life!!  Someone made the choice to do this and we have our boy standing before us as a result.  Without the donation and the resulting transplant, Dillon would not be with us.  He would have died last summer at UNM as his airway was being compromised and his kidneys were shutting down.  Thank the Lord and all the spirits and positive energy in this universe that someone made the choice to sign up for umbilical cord donation and he was saved!!  You have it within your power to be that person for another family.  So I urge you to carefully consider this as an option and to "pay it forward" in honor of Sir Dill Pickle.  
http://bethematch.org

#2:  Another way to help that is more immediate is to donate blood and/or platelets.  Dillon received over 80 transfusions during his stays at UNM and Children's Colorado both in the form of red blood cells and platelets.  These transfusions were as much a part of saving his life as the transplant....without them he would not have recovered and would not be here today.  Platelets are especially important because it is a longer donation process (several hours) and the platelets are only good for 5 days....so the hospitals need a steady supply coming in all the time.  There were a couple of times in Denver where the hospital ran out of platelets.  They had to delay transfusions for lots of people including Dillon and then they ended up having to buy platelets from an outside source and they cost the hospital $600 per unit!!!  So contact your local hospital, Red Cross, or United Blood Services to find out how, where, and what you can donate (not all locations are set up to take platelets). 


So there it is....my plea for help!!!   Lets all take this experience that has been (and continues to be) scary and heart-wrenching and unbearable and amazing to save another life!!

THANKS IN ADVANCE!!!!

Can anyone and everyone who reads this consider posting the information on their own blogs or on facebook or any other form of communication that I might be overlooking.

Here are a couple of photos to make you smile....

Big D enjoying some hot wings....he ate 5 plus some coleslaw (a large meal for him :)

Dillon riding a "banana bike"

Happy Happy Luca cruising on his banana bike.

Luca on top of Sandia Mountain (he and Grampy rode the tram)

One more set of results

Sunday, July 14, 2013

This past week found the Buckley crew in Denver yet again.  The first couple of trips back up north were fun...we looked forward to it.  We wanted to see friends and go to favorite restaurants, watch some TV in the air conditioned apartment.  This time was different.  This time Dillon and I both had some level of dread and annoyance with the trip. Most of our friends have gone home from Brent's so we feel like strangers, outsiders, and it just takes so much effort to be friendly and open with these new families who very clearly view us as the new family because they have never seen us before either.  I am also acutely aware of Dillon's anxiety around the IV placement, the PET scan procedures which include not eating for about 18 hours, and the injection of a radioactive substance that makes him feel weird.    Sean was the only one who was "excited" because he gets a couple of extra days off work and some much deserved R&R with the family.  Luca was fairly indifferent...not looking forward to the trip but not dreading it either.  I think Big D and I are just ready to be done with Denver and get on with our lives.  The trip feels like an interruption.

With all that said, we drove up last Sunday, had tests Monday and Tuesday morning, and drove home Tuesday afternoon.

The results are POSITIVE.  Dillon's blood work continues to improve and come closer to normal with each visit.  His red cells, white cells, and platelets are doing great.  We are still waiting on the results of a special test that will tell us how functional all of Dillon's different white cells are, which is a direct correlation to how much immunity his body has built.  If things continue as they have been, Big D will be able to stop wearing his mask in a couple of months (hopefully sooner) and his system will be strong enough for him to get re-immunized and start school in September.  Dillon has dodged a couple of bullets including a bacterial infection that he was exposed to at UNM, as well as exposure to whooping cough at his basketball camp earlier this summer.  He also recovered from a flu-like virus....so this all means that his system is mounting defenses against these germs!!!

The PET scan still shows a few lymph nodes in Dillon's neck but they are smaller than they were on both the February and March scans.  The docs are not overly concerned and assure us that these are not looking like or acting like nodes that have any sort of cancer involvement.   So, they are there and we will continue to follow them but we need to not worry about them much.  Dillon's primary oncologist talked to us as a family about the fact that over the next couple of years we need to learn to not assume that every lump, bump, or illness is a return of the cancer.  I figure it will only take me 40 or 50 years to get to that point....but the doc assures us that life will be better if we can get our brains to stop automatically jumping to the cancer card.

August 12th is our next visit and it is the beginning of Dillon's ONE-YEAR POST TRANSPLANT workup.  They will compare all of his pretreatment test results to his 1-year results and will make some determinations about some of the possible long-term side effects on his entire system.

Life is very much back to normal (well, it is a new normal but we are getting used to it) for the Buckley clan and that is why I have not been blogging as of late.

Buckley boys playing Bball in a downpour