Buckley boys....On The Dark Side

Just before the New Mexico Philharmonic concert

Thursday, September 26, 2013

Last Saturday our family had an amazing experience.....let me set it up.....

On the morning show of Dillon and Luca's favorite pop radio station they were giving tickets away one morning for some sort of contest.  When Dillon heard what the tickets were for he went nuts.  The announcement was that the New Mexico Philharmonic was going to be performing an entire show of John Williams music.  Dillon LOVES to see and hear live orchestras.  Even if you don't know who John Williams is....you KNOW John Williams.  He is a composer and has written some of the most famous movie score music in the world.  For example:  Superman, Jaws, Close Encounters of the Third Kind, Indiana Jones, Harry Potter, ET, Raiders of the Lost Arch, Schindler's List, Jurassic Park....AND  Star Wars!!! There are lots more but these are ones that "everyone" knows.

Recall that Dillon did not want to celebrate his "re-birthday" AKA transplant anniversary.  Well, Sean and I overrode this desire and bought tickets to this concert as our family's celebration and remembrance and reward for enduring the past year.  Each of us had a long, hard road....so we wanted to honor that.

When I handed the boys the tickets at dinner the night before the performance they went crazy....hooting, hollering, hand clapping....pure excitement.  

We drove down to Albuquerque early.  Had a nice dinner together and off to the concert we went.  It was on the campus of UNM...which Dillon has declared is the college he will be attending (yahoo In-State tuition :)  He has never been on that campus and he was awestruck and making comments like...."I can't believe I will be walking around here in a few years." (Mama brain screaming....me either buddy!!)  Anyway, we come up to the entrance to the theater and there is a crowd gathered....then we saw them....the entire cast of Star Wars!!  Grown adults decked out in the most realistic, amazingly detailed costumes I have ever seen.  OF COURSE...we had no camera, not even a phone camera, because flash photos are not allowed in the theater so why carry one, right.  I asked a nice fellow to take a photo of the boys and send it to me....and that is what you see above.  We could have taken a zillion photos...the whole group of storm troopers where a sight to see.  We had a fabulous time and it did our hearts and souls good to mark the occasion in this way. 

HAPPY ANNIVERSARY...SECOND BIRTHDAY

Thursday, September 19, 2013

On this day in history....Dillon Jace Buckley

The IV pole that holds the bone marrow, as well as 9 other infusions

The clock in Dillon's room when they began the transplant

received his bone marrow transplant.  September 19, 2012.  Do you remember where you were when you heard the news?  Luca remembers.  He was at school.  As soon as the transplant was complete I called the school and asked the secretary to please have the teachers in Luca's and Dillon's classes announce that the transplant was complete.  Luca remembers his face feeling hot.  He remembers being so so so happy that he had to blink fast.  Luca remembers that his class cheered.  I called Sean several times throughout the processes at work so he was with us on the phone for some of the time.  I took photos of each step and emailed them to family as they happened...so it was like they were watching it live.  I remember the tears rolling down my face as my boy slept and the doctor announced..."We are done."

Today Dillon went to school, did homework, avoided chores, pestered his brother, and watched a movie.

LIFE IS GOOD!!

Dillon was very nonchalant and dismissive about the whole anniversary thing.  I offered to bring cupcakes to school to celebrate.....I got a huge eye roll.  I honestly don't feel as strongly about today as I thought I might.  It is strange really, a mystery to me.  Some people actually celebrate transplant day as much or more than birth days.  I thought I might be one of those people.....but it turns out I'm not.  Dillon does remember the transplant day but for him I think it was just another miserable day of feeling lousy, being sick, exhausted, and isolated in a hospital room.  He did not feel the hugeness of that specific day then and he doesn't now.  He does know that ultimately it saved his life....but so did all the other treatments he had; without everything else up to and including the infusion he had just yesterday....the transplant would have failed and he would probably not be here today.  I think I agree with him.   This day was one of many that were enormously significant.  I will be eternally grateful for this scientific miracle and the generous donor that let me continue being in this world with my sweet boy.

This week....a year ago today....and NINE years ago..

Saturday, September 14, 2013

This week has been an emotional and reflective week for me.

On Monday, September 9, my sweet little one turned nine years old....how does that happen???  Just a minute ago he was a tiny little preschooler.  And then I remember that he was an innocent 7 year old when his brother was diagnosed with cancer.  My mind goes to a year ago when we were all at the apartment in Colorado for his birthday.  It was a joyous time, but oh so very bitter sweet.  Luca and Sean were leaving the next day, to return to Santa Fe and "normal" life, while Dillon and I stayed behind in Denver embarking on a yet unknown journey.  Luca, in all of his wisdom, knew that his real life super hero was about to meet the battle of his life.  He knew that the very next day his most favorite person in the whole wide world was going to be getting poisoned and irradiated in the name of healing.  It was wonderful having my boys all with me a year ago....but this year is so much sweeter without so much bitter.

Always so full of enthusiasm

New bike shirt....you know Luca is ALL about the gear!!

This kid LOVES pumpkin pie

Later in the week....September 11, 2012....the horror and the memories that will plague me for a lifetime.   Yes, the recollection of the terrorism, the death, the buildings, the heroism, the sorrow 11 years previous.   But also.....my baby boy began radiation that day and two hours after the first treatment he was so incredibly ill that he had to be admitted to the hospital three days earlier than planned.  The severity of illness even shocked the doctors.  And the bitterness and anger that Dillon felt at having "lost" the last three days that he was going to be out of the hospital before his transplant was profound.

And now, it is Saturday.  We had Luca's birthday party today.  Many friends came to ice skate with him and then enjoy some cake, Grampy's home made ice cream, and some fresh fall air.  Luca is at a sleepover with a buddy.  Sean and Dillon are having some much needed boy time at a movie.  Here I sit at my computer in silence, contemplating, reflecting, feeling so much gratitude for life.  How has it been only a year.....it feels like a lifetime.

Luca and Grampy making cherry ice cream.  A tradition that started when Dillon was born and all the Mott grandchildren have had a chance to do this on their Birthday

Luca and a few of his friends skating

Dillon and Joseph heading out onto the ice

Couldn't keep the candles lit, or get them lit for that matter.....(see below)

everyone crowded around, but it was not enough......(see below)

So then they crouched down, Dillon lit the candles, and we sang really fast, just before the wind blew the candles out :))

Look at these 9-year-olds all trying to read the card...it was so sweet.

and then the laughing at the punch line.....priceless!!

Dillon's health, energy, endurance, and spirits continue to grow and thrive.  He is loving the social aspect of school but is also thriving with the academia.  He is so focused and motivated.  My inside joke...."What middle-schooler looks forward to starting school and is excited about homework.....One who missed a year because they were in the hospital."  We went to UNM yesterday (friday Sept 13).  He did amazingly well with the blood draw.  He only got nervous right before it happened and then he stayed calm and completely focused.  He demonstrated so much strength and courage.  They discovered that Dillon's immune system is taking a tiny little dip (maybe because he has been exposed to so much more the past 2 months) so we have to go in next week for a 4 hour infusion of antibodies.  It is nothing really worrisome.   The nurse assured me that "sometimes it happens."  We (especially Dillon) were so sure that we were done with infusions....so it was a little bit of a shock and definitely a disappointment for Big D.  He definitely would rather be in school and doing double extra math homework instead of being in the hospital for half a day with a needle in his arm.  All the rest of his labs are good.  He lost another 3 pounds (eat Dillon, eat!!!) but he grew 1/2 cm....YAHOO!!!   He put some pants on today that he has not worn since the spring....and they are definitely too short.  He has grown just over an inch in the past 18 months.  So that is proof (for him and for us) that he is in fact growing.  With the eating....Mr. Almost Teenager is using this opportunity to make repeated attempts to eat copious amounts of junk food whenever the opportunity arises. 

Next Denver visit is in October.   We will keep ya posted as to anything new or exciting happening....otherwise, be well and savor all the moments that life is throwing at you (even the cruddy ones :))

Let the year begin....

Tuesday, September 3, 2013

Today is the first day of school.  Dillon has not been in school since May 15, 2012.  He was so excited and a little nervous when we parted ways this morning. He tentatively walked up to a classmate and began chatting...before I knew it he had disappeared into the surroundings of people and trees.  It was so normal...but my heart was in my throat the whole morning.  It felt similar to when we left him for the first time in kindergarten.  All those firsts, all of those unknowns, all of the anticipation.  What a blessing....what a miracle......our boy is a 7th grader.

At breakfast this morning the boys were discussing what they were going to do first when they got to school.  Of course playing basketball was a hot topic.  On their playground, however, Luca is not allowed into the area of the field that holds the court where Dillon would be playing basketball (there is a smaller court for the younger kids).  Dillon spoke of wanting to playing basketball with friends (and my heart was aching for Luca not to feel left out).  Luca quickly chimed in.  "Dillon, I know you missed your friends a lot and you have been with me all summer.....but after a few days of getting used to being with them again, will you come play basketball with me on the small court?"  Oh this boy and his courage, his kindness, his huge understanding heart.  Dillon of course told him that he definitely plans on hanging out with him a bit and shooting some hoops....just not today...but for sure it will be soon.  The loving bond between these two never ceases to amaze me

The Buckley Boys first day of school 2013-2014

Luca was just plain excited.  He was zipping around the playground locating friends and hiding from the girls in the trees.  This boy has the most amazing memory.  At the end of last school year he wrote a note to his new teacher (his teacher for 1st and 2nd grade left at the end of last year).  He held onto that note the entire summer in his "special box" in his room.  This morning as he was getting ready, he announced that he had put the note into his backpack....how does he remember these things???  Right when we got to school he located his new classroom, waited around a bit, and as soon as his new teacher entered the room Luca went right up to him with a bright smiling face and handed him the note.  It was sweet and special.  His teacher later told Sean and I that Luca was the first face he saw in his classroom that morning and that he would not soon forget the sunny little boy who gave him a note on the first day of 3rd grade.

Luca chose to wear his Relay for Life American Cancer Society shirt today.  On the back it says 'caregiver.'  He is so proud to be Dillon's little brother.

The Santa Fe Waldorf School has a ceremony on the first day of school.  The entire school (all 220 of them from K-12) gathers outside under the trees to honor the upcoming year.  The Senior class is present and they give flowers to each of the new First Graders as they embark on their journey through the grade school.  It is a welcoming ceremony.  The Eight Grade class is honored as this is the first day of the last year of their grade school journey.  Then the new faculty are introduced.  Finally new students are introduced to the school.  They don't have to go up on the stage or anything and many of them try to shrink down into their seats as their names are called.  I did not know if Dillon was considered a "new student."  I mean, he has been there since 2nd grade....but he missed the entire 6th grade.   And alas, the names for the 7th grade class begin....and Dillon Buckley rings loud and clear over the speakers.  There is an immediate roar of cheers....kids, teachers, and parents alike.  Then Big D stands up, turns around toward the crowd with a huge smile on his face and waves a big hello to everyone.   The cheers and applause are enormous and prolonged.  Someone (presumably a friend of mine) leans in behind me and whispers...."he's back."  As I sit there trying to control the tears I think to myself....IS HE EVER!!!!!!

There are no words.......first day of 7th grade

An interesting little (actually GIGANTIC) fact.....August 24 was Dillon's 1-year milestone for being cancer free!!!

Also....September is Childhood Cancer Awareness month.  It is a gold ribbon.  Interestingly enough September is also Lymphoma Awareness Month and the ribbon is GREEN.....Dillon's favorite color.  Life is full of so many mysteries.

    

The RESULTS are in.....

Tuesday, August 20, 2013

Hello everyone.  As the summer comes to a close, the Buckley clan are all healthy and strong in body and spirit.

Pausing for a photo on the trampoline

We spent several days in Denver last week completing the first portion of Dillon's One-Year post transplant follow-up (there were 2 tests that we could not get scheduled while we were there and had to postpone them until our October visit).  We have the next followup in October and then we move to an every 4-month Denver schedule with UNM being every 2 months.....the spacing of those visits feels like such a relief.

Dillon going into the bone scan machine on August 12, 2013

EVERYTHING is on track.  Dillon's bone marrow is clear of all cancer cells and it has transitioned to 100% donor cells including his blood type and the chromosomes....there are none of Dillon's old corrupt cells left....which means chance of relapse is very very low!!

Lungs, kidneys, liver, endocrine, heart, ears, eyes, muscles, bones, stomach, growth.....everything is within normal limits and continuing to improve as we get further and further out from chemo, radiation, transplant, and steroids.  His heart is stronger now than it was at diagnosis and he has begun to grow after not having grown in 20 months....now for the catch-up growth spurt :))

We are truly blessed and we finally feel like we are coasting on the downhill part of the strenuous mountain that has been our lives this past 15 months.  Of course, we still hit the occasional pothole in the road....but that is to be expected at this phase of the game.  A lot of the bumpiness is now emotional processing and healing for the entire family.

Keep praying for all the kids with cancer.  Since we left Brent's Place in February, five of our friends have earned their angel wings.....so please keep these families in your hearts and minds.

We got a surprise visit a couple of weeks ago from Bryan, Giovana, and Sophia (the Dallas Buckley clan).  The kids had a blast swimming and laughing.  Dillon and Sophia are only 6 weeks apart and they are two peas in a pod.  Even at the age of 12 and not having seen each other for months, they fall right back in together. The laughing that the pair of them do together is sweet and contagious.  They were laughing so hard at the county fair when we went to see a friend show her pig that they had the whole group of us in stitches.

Sophia, Dillon, Luca and Copper

School starts in 13 days.  Dillon will be an official middle-schooler in 7th grade and Luca will be in 3rd grade.  Both are excited and looking forward to the adventures that the school year brings.  Luca will continue with his cello lessons and Dillon is resuming viola with his teacher Shanti Randall.  The boys are both doing a golf camp once a week in September and October and then we switch over to basketball (Dillon) and hockey (Luca).  I will be employed this school year doing childcare for a friend and keeping my schedule flexible to accommodate our busy family life, medical followups, and any unforeseen circumstances that might arise as Dillon transitions back into the very social and germ-filled world of school and sports.

ONWARD AND UPWARD!!!

Luca teeing up at hole 1 this morning (8/20/13) 

Luca swinging a driver at hole 1 this morning (8-20-13)

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Dillon putting on hole 4 this morning (8/20/13)

Boys chatting on the green...they are such good friends

Dillon hitting on hole 5 (8/20/13)

Luca tending to the flag for Dillon's putt (08/20/13)

HUGE CELEBRATION

Tuesday, August 6, 2013

I am going to start with photos.....

THE BIG REVEAL........

As of July 31, 2013.....DILLON DOES NOT HAVE TO WEAR HIS MASK ANYMORE and HE DOES NOT HAVE ANY MORE PRESCRIPTION PILLS TO TAKE!!!!!!

The blood work from Dillon's last visit in Denver finally came in and it revealed that his immune system is functioning at a level that can now tolerate being exposed to the environment.  He was/is so so so over the moon happy.  He is a changed boy.  He ran outside and took huge gulps of air.  He jumped on the trampoline with Luca and then went outside and played basketball (pictures above). Still, several days later, he puts his hand up to his face constantly (to adjust the mask)...but it is not there....habits become so ingrained.  He catches himself and laughs. 

A couple of poignant quotes from the day....

Dillon as he walked out the door to play outside....."I feel strange, this is weird, I almost feel naked."

Luca proclaimed in his ever so wise way....."My world just got a little bit better!!"

As we disposed of Dillon's remaining pills, Luca stated directly into the pill bottle....."You served my brother well but now you have to GO!!"

As promised, there was a ceremony around the mask disposal.....

 

Starting the bonfire.

Blaze is going strong

tossing in the nasty masks

see ya later masks!!!

they did not even burn....they just melted

I think that face says it all!!!

A couple of days ago it rained and I opened the windows in the house for the first time in over a year....Sean came home to the fresh smell of moist air in the house and he just cried.   Huge, powerful feelings over the simple things in life.  Ohhh the smell of fresh rain air INSIDE the house.

Yes, I still have to clean a lot....but not quite as compulsively (although with the windows being open there is sure to be more dirt ..thus more cleaning (hahaha).

It took 3 weeks to get the labs back that relieved Dillon of the blue burden (mask) and it seems impossible....but we are headed back to Denver this coming weekend to begin his 1-year post transplant appointments.

He will be starting school with his 7th grade class on September 3.  We covered most of the curriculum over the 5 months that we have been home so there is no real concern about him being behind.

You have never seen a middle-schooler so excited to start school....can you imagine :)))

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)