Everything is looking good

Monday, May 27, 2013

A week ago today the Buckley clan were in Denver for a quick in-and-out visit.  We drove up last Sunday, had appointments in clinic on Monday morning, and then drove home Monday afternoon.  It was a whirlwind fast trip that left Sean and I feeling pretty tired....but....

ALL of Dillon's blood counts are within normal limits!!!!! 

Usually there are a few things that are outside of normal, not hugely, but still points of interest for the doctors to keep an eye on.  This time everything was perfect; lungs, liver, kidneys, blood, white cells, red cells, platelets, sodium, calcium, potassium, vitamin D...etc. etc.

He also gained 1 kg (which is 2.2 pounds) in the 6 weeks since our last Denver visit...so even that is trending in the right direction.  Dillon has been exercising and keeping active.  People who have not seen him in a couple of months comment on how he looks healthier, less frail, less pale, more robust.  We who live with him see strength and stamina, running ability and speed, jumping ability at the hoop (all of these things were impossible for him just a few short months ago).  His tummy gives a little trouble here and there but it is completely manageable, albeit frustrating and irritating for Dillon, but it does not keep him from continuing to eat a variety and quantity of foods.

I have been told by a few good friends that I look more relaxed, that the tension has dissolved from my  face...finally.  I am attributing that to two things.  One is obviously Dillon's health status.  But I think the other is because I have taken on a project at home...painting the living room and my bedroom.  It feels to me like my ability to relax into being focused on something other than the care of the kids (both Dillon and Luca...because keeping Luca healthy emotionally was/is a major undertaking during this whole thing) has helped my mental status quite a bit.  The house is a mess, I am letting some of the other house cleaning slide a little bit and/or relying on the boys to pitch in more, and I am painting.  I love to paint and it feels so good to have nice fresh walls in our living spaces.  Of course now the kids both want their rooms done but I informed them that I was going to do mine first....hahahaha...that is a rarity, putting my desires and preferences ahead of theirs :))

All is well in Buckley land.  We go to UNM in 3 weeks for a routine lab draw and exam.  Then back to Denver July 8 for his repeat PET scan (still watching those lymph nodes that were inflamed in his neck when we left Denver in February), PFTs (pulmonary function tests to check lung function), and extensive blood work to help determine the actual functionality of these lovely white cells that are growing in his system (we know they are there...but are they working??). 

The summer will be low-key for us as we can't camp and can't travel and can't fish and can't be in the sun or heat too long....but we will do lots of fun stuff in a safe and healthy way for Big D.  We have a list going of what we have missed out on the past 2 summers and we will "catch up" when the time is right :))

One year ago today.....

 Wednesday, May 15, 2013

One year ago today the bottom fell out of my world and I was falling, falling, falling....

One year ago today I learned the depth of the words fear and love.....

One year ago today I felt completely alone and isolated.....

One year ago today I thought I would never stop crying.....

One year ago today I was not sure my first born son would see his 12th birthday.....

AND TODAY.....

My world is strong and solid and steady....
The love is much more powerful and significant than the fear....
I have never felt so much support and community and belonging.....
I continue to cry but it stops for days or weeks at a time and is often triggered by pure joy and gratitude rather than sadness.....
I see my adolescent child exhibiting moments of teenage behavior and I look forward to the trials and triumphs of seeing him into adulthood....

And through it all there is this child, this boy, this amazing light in my life.

We are so blessed.  We will never look upon this illness as a curse; it will always be a gift of awakening, of sharing, of humbleness, of friendships, of family, of pure love, of the generosity of strangers, of amazement, of gratitude, of innocence, of time, and of life.

A beautiful Saturday of music and love

Sunday, May 12, 2013

Yesterday was a big day for the Buckley clan.  With all four grandparents in attendance, both boys had music performances.  Luca had his very first cello recital.  He was super excited and confessed afterward that when he got up on the stage and looked out at the audience he had A LOT of butterflies in his belly.  He has been playing for less than a year and can already read music, his tone is full and warm, and he enjoys it so much.  Each week he looks forward to his cello lesson and he willingly practices (most of the time wink wink).  I don't know why there are two boxes for this video (at least that is how it looks on my screen).  One is empty and the other plays, so try them both.

8-year-old Luca just before first cello recital.

Then we headed out to the First Presbyterian Church for a Benefit Concert put on by Dillon's viola teacher, Shanti Randall. Dillon was in the paper again the day before the concert.   Here is the headline....

Shanti played a stellar repertoire and it was beautiful....but Dillon brought the house down!!!  A few photos.

Shanti Randall on viola

Four of Dillon's best buddies in the front row with him.
Seven of Dillon's very closets friends showed up in support!!

Focused on the music....he said he was nervous but it didn't show

Dillon and Shanti practicing their duets

Buckley family after Luca's introduction of the concert...
It was so funny because he used a microphone and his voice was louder than he expected
and he just started laughing so hard right there up in front of a church full of people.
Everyone laughed and clapped and he finally regained his composure and introduced the family.

Here is the video of Dillon and Shanti playing two beautiful, sweet duets...it was the Grande Finale of the concert.

Dillon is doing beautifully.  He has had a few belly bumps, usually the result of overexertion physically, and tomorrow (Thursday) he is having a procedure done on his right big toe.  It has been ingrown for 2 months as the result of his nails dying and falling off after the radiation and high-dose chemo regimens.  We have been managing it up until recently when a flare of an infection made it necessary to have the edges of the toenail removed.  We were trying to avoid any procedures but at this point the risk and danger of the current infection becoming systemic (circulating throughout his body) outweighs the risk of the procedure site becoming infected.  He is very nervous about the shots that are supposed to numb his toe, as well as anticipating any pain that may occur during or after the procedure.  He is not a happy camper about this but we have reminded him that it beats having to be hospitalized with an infection that is raging throughout his body and having to receive IV antibiotics  Does he agree and smile....no.......but with a huge roll of the eyes he accepts it.  This almost 12-year-old boy's determination and perseverance through this illness will never cease to amaze me.  Even though he is scared and angry, he does what he is supposed to do each and every day. 

Sunday brings our next departure to Denver.  All four of us are going....we try to make it fun...like a tiny little vacation with some cruddy needles in the middle :))  

QUILT RAFFLE....fund raiser....helping us stay above water

Monday, May 6, 2013

My mom and some of her quilting friends have created some amazingly beautiful art in the form of 2 quilts that they have offered up as a raffle in honor of Dillon. I have been unemployed now for a year and as you can imagine the current and future finances are in shambles and I am in no position to begin a new job in the near future. :((  So these sweet ladies have created this raffle in an effort to help our family continue to thrive during these trying times. 

Below you will find pictures of the quilts.  They are stunningly beautiful. 

Tickets are $2 each or a book of 6 for $10.

All of you friends and family and wonderful supporters that are near and far can participate in this fun event.

All you have to do is click on the donate button that is on the blog.  This will take you to a paypal donation page.  You will enter the amount you would like to donate, and in the notes or comments section be sure to include your phone number and/or email address so that we can contact you if you win the raffle.

If you would rather not participate in the raffle or you just want a couple of tickets but want to donate a larger amount of money.....again.....just click on that donate button and be sure to include in the notes what your intention is (for example:  A $50 donation that includes 2 raffle tickets and the rest of the money is donated).

The raffle drawing is on MAY 31.....BIG D'S 12th BIRTHDAY!!!!!

The first winner drawn gets to choose which quilt they would like and the second winner gets the remaining quilt

"Turtles for Dillon"....queen size

"More Turtles for D"...this is an over-sized lap quilt

Benefit CONCERT