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

ALL CLEAR.....

Monday, October 21, 2013

A quick note....and more later.

ALL of Dillon's test were negative.  He has been given the all clear...no recurrence, no strange illness or disease.  Just plain old immune system activity enlarging the lymph nodes in his neck.

In a few days Dillon is going to his first school dance...it is a costume party and here is what he is going to wear

 Oh yes...I just have to share the costumes that the boys picked out for Halloween.

Sparkly shoes and tights and everything!

Look at those smirks

Thane's nightmare...kissed by 2 beauties

Sucked back into the hospital vortex....

Tuesday, October 15, 2013

Last Wednesday found the Buckley crew driving back to Denver for a 3-month checkup.  We ended up staying in a hotel across the street from the hospital because for the first time Brent's Place was full.  It was a nice change really and the kids loved the time they got to spend in the pool.

We got a reality check when Dillon's PET scan came back showing increased inflammation of several lymph nodes in his neck, but the one that we have been watching since February was twice the size it was three months ago....still small, but bigger....YIKES.  All of the other tests and blood work showed normal results.  The Denver Oncology team consulted with radiology and the team in Albuquerque at UNM.  After much discussion, we decided to biopsy this lymph node to be sure there isn't  any disease trying to grow back in Dillon's body.  We chose to come back to New Mexico and have the biopsy done at UNM, as opposed to staying in Denver, having the expense of the hotel and food, and an unknown length of stay based on his recovery after surgery and the followup needed for the incision check. With coming back to Albuquerque, Sean can go to work, Luca can play with friends, and Dillon and I will be close to home for a quick drive home after the admission. The UNM team asked that we arrive Monday afternoon so Dillon could be admitted to UNM for a day or two and get the surgery done as soon as possible.  YIKES again...we haven't be in the hospital at UNM for over a year.

Things got a little complicated because Friday afternoon after all the scans and testing were complete in Denver we headed to Pagosa Springs in southern Colorado to visit Sean's parents for a couple of days.  Instead of cutting our visit short we left from Pagosa (after a fun and relaxing weekend) at 6:30 a.m. Monday and drove home, which is three hours.  Once we got home I sent Dillon and Luca outside to play, and within an hour I had unpacked and repacked our suitcases.  Dillon and I bade Sean and Luca farewell at 11 a.m. and off we went to Albuquerque.

We ended up waiting in clinic for almost 4 hours before they got Dillon a room; and then we discover it is a tiny little room with no bed for the parent.....thus the VORTEX begins.....

At 3 p.m. Monday we were told surgery would be up to see us in "a while."  We were too late to order dinner so we had to scrounge for food.  At 9:30 p.m. the nurse informed us that the surgeon on that evening told her they had no intention of seeing Dillon that night and that the morning surgery crew would "take care of it."   REALLY, we had to rush home from Colorado for this????  In the meantime, Dillon was told he had to stop eating and drinking at 10 p.m. just in case surgery wanted to take him to the OR first thing in the morning.  You can guess how well I slept on the reclining rocking chair in the corner. The sliver lining....the nursing staff.  It was amazing to reconnect with the staff that were with us in the beginning of this journey. They saw us at our lowest and they held us tenderly in ways that are difficult to express in words. Every single nurse came into our room, said hello, and checked in with me about Dillon's cancer status. When they learned it was a precautionary biopsy and that Dillon has been in remission for over a year, they all rejoiced with us and reminded us to stay positive and know that there was no way the cancer was back.

In the morning we waited, and waited, and waited, and waited.   At 10 a.m. the surgeon came, did an exam and said he was ready for Dillon.  Down we went to the pre-op area.  Dillon was very nervous at this point.  We spoke with the barrage of people that come in and ask the same questions over and over (the nurse, the surgeon, the anesthesiologist, the med students).   Then suddenly there is a commotion in the hallway and they tell us Dillon has been "bumped."  SIGH.....turns out a toddler came in from a car crash and needed immediate surgery.  Dillon, being the least critical patient in the Pre-op area, got the bump.  My sweet boy with a huge heart put his anxiety and discomfort of extreme hunger and fear aside and told the team he hoped the little boy would be okay and that he was fine with waiting.  We sent lots of loving energy to the family of this little one.   At 2:20 p.m. they finally took Big D back to the OR.  So here I sit updating the blog while I wait for 2 hours. They decided to do a bone marrow biopsy in addition to removing the inflamed lymph node just to be thorough and leave no stones unturned.

Please know that even though there is an underlying fear that this lymph node is a relapse....we all very strongly believe that it is just inflamed from being exposed to a virus or some other infectious agent.  This biopsy is precautionary, to put to rest the doctors' and our concerns about recurrence or relapse.

The recovery was difficult. Dillon gets extremely nauseous from anesthesia. It takes hours to wear off. The pain he felt in his back from the needles boring into his bone was quite significant. The nurse in recovery assured me that it is a minor discomfort for most kids. Well....she has not met my kid....he is hypersensitive to bone pain. I very discreetly found the doctor and demanded a stronger pain med be give via the IV.

It looks like D and I will be in the hospital for two days and after a short recovery we will back to our normal routines...this is just another bump in the proverbial road.

The nurses all bade us farewell and told us that they never wanted to see us again : )))

I will update with the results once we have a clear picture, which will probably take several days to a week.

Love to all!!!

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.