Day 101......

Saturday, December 29, 2012

YAHOOO  Big D, Mr. Pickle, Dillon Jace, DB.....day 100 is in the rearview mirror!!!!

It is unbelievable that it has been 100 days since that fateful day in September when those magical cells of golden power and life dripped into my boy's body.

Clinic this week was a VERY thorough exam.  It took over an hour, just the exam and questioning of Dillon.  Then there were the 7000 questions I had come up with in the past week as day 100 was dancing in the distance.  I warned Dillon that I had lots of questions and I apologized to him in advance if it was embarrassing to him in any way.  As the doctor began his visit, as he always does, he addressed Dillon first.  He asked...."Is there anything that you are worried about?"  After a brief pause and the oh so classic look to the side that our Dillon gives when he is really thinking about something....."Nope" was all he could conjure up.  Then the doc winks at me and asks Dillon...."Is there anything that your parents are worried about?"  And with a wholehearted, big belly laugh and a mischievous sparkle in his eye Dillon said..."Yes....EVERYTHING!!!!"  To that the doctor responded....."Perfect, everything is right on track!"

We have a really good rapport with this particular doctor as he was one of the main doctors on service during the hardest part of Dillon's post transplant complications.  He was there for the code blue day where we thought we had lost him, he was there for the over-hydrated/shutting down kidneys and extreme swelling and jaundice, he was there for the horrific mucositis and vomiting of massive amounts of blood every day, as well as being there from the beginning to the end of the horrible abscess that occurred on Dillon's behind. So, needless to day, we really trust this guy, we like this guy, we have a friendship with this guy.  Having him as our day 100 examiner was a blessing.  He was so incredibly patient (with my 7000 questions) and thorough, so personable, joking around and laughing with Dillon a good part of the time.  It was a pleasure and a comfort.

The outcome.....you ask??????

Dillon is doing FANTASTIC!!!!!  The doctor went over every system in the body and Dillon's only issues are all pretty minor.

He has a continued mild skin rash and irritation. They have decided it is most likely NOT GVH of the skin at this point, which is a plus.  His nails were actually  killed off during the radiation and chemo so the new nails have been pushing his old nails off as they grow.  They are about half way there and this means that Dillon feels a pressure and a pulling on each nail as if it is going to actually rip off (the old part that is on top of the very thin, very tender new part).  The doctor suggested keeping the nails intact, bonded together, and solid by using a clear nail polish.  Then the new nail will just keep growing and eventually that old dead part will fall off but it will happen when it is closer to the end of the nail, as opposed to being in the middle where trauma and discomfort will occur.

Dillon's other issue is still his belly and the GVH.  This is MUCH improved but we are still cautiously optimistic.  He began on 27 mg of steroids twice a day with a steady but slow decrease every week or two.  After this visit he was decreased to 9 mg every other day.  They suspect we will continue on that dose for a couple of weeks and then he will be off the steroids.  The two weeks following that will tell whether or not the GVH in his gut is cured.  If symptoms begin to return, then the likely thing will be another endoscopy and biopsy to see if it is in fact lingering GVH or if it is just his gut continuing to heal, adjusting to life without steroids, and still being  traumatized.  Dillon was able to maintain his weight this week!!!  YIPPY!!!!  He continues to work diligently on eating enough calories all day every day.....and the hardest part is still getting in enough fluids, so at this point we are continuing the overnight fluids to make sure he is well hydrated.

What is the next step you ask?????

On January 7 or 8 (don't have the appointment confirmation yet), Dillon is going to get his post day-100 bone marrow biopsy, spinal tap, and port access and flush (which has to be done monthly and Dillon dreads it, so the doctor said it could wait an extra week and they would do it when he is under sedation for the bone marrow biopsy).

The above steroid taper will occur.  If Dillon's belly is okay off of the steroids for 2 weeks, then a taper of some of the other meds begins.  We are REALLY looking forward to this!!!!  The Pickle is so incredibly tired of swallowing pill after pill after pill day in and day out.  Not only will he be slowly getting off some of the meds but some of those meds have their own side effects and those will also decrease as the meds decrease....so this is a really big deal!!

As you can surmise from the above commentary.....I don't think we will be home in mid January like we hoped.....although we pretty much knew that as soon as the gut GVH was discovered.  Any little extra bump in the road pretty much guarantees a delay in going home.  Lets hope it is near the end of January, but if things don't go well with the discontinuation of the steroids then we will be longer than that.  It can feel a bit discouraging at times....to imagine an even longer stay in Denver.....but we are way closer to getting home than we were in August so we try to remain optimistic and hopeful and positive.  I would much rather stay an extra month and have Dillon stable and off more meds than to go home and feel nervous and worried (more-so than I will be anyway (wink wink).

Big D's spirits are high and his energy and strength are slowly increasing each day.  His zest for life, his personality, his motivation, his humor are all coming back. I swear this is happening in the past week or so and I suddenly feel like the "old Dillon" is reemerging.


My parents are here for our "second Christmas" and the kids are really enjoying the extra attention.  Luca is doing very well.  He is heading back to Santa Fe on Tuesday with my mom and dad....Sean is leaving tomorrow as he has to get back to work. 

Tonight......DENVER HOCKEY!!!!!! 

Day 98.....a little recap of some fun stuff

Wednesday, December 26, 2012

Last Friday evening was the Brent's place holiday party.  There was a "store" for parents to choose gifts for kids and one for the kids to choose gifts for each other and their parents (all of which was donated and free of charge to us).  There were crafts (the boys made stockings with their names on them), there was a movie, and Santa came for a visit.  While we were watching the movie one of the Brent's employees pulled me aside and asked if the boys would like to go to a Broncos game.....are you kidding me???  Of course they would.  They are not the biggest football fans but famous is famous and so they can't help but get caught up in the whole Broncos/Manning crazy that happens here in Denver.  A family from out of town had 3 extra tickets (perfect, one for each boy and I can stay home and relax).  I did not mention any of this to the boys.  The family drove up from Colorado Springs in the dark, in rush our traffic, which took them almost 3 hours, just to deliver the tickets to Brent's in person.  I was chatting with another mom in the kitchen during dinner clean-up, when Dillon came zooming up to me bright eyed and excited. "Mom, Mom, Mom......we got tickets to the Broncos!!!!!"  He had the tickets in hand and his eyes were all shiny with excitement.  Luca came running in too and was jumping up and down.  "Mom....these people came in and they gave me an envelope and I opened it and it was tickets!!!"  They were both talking a mile a minute.  I completely underestimated how this would affect them.  I thought they would like it....but this was a huge happy reaction.  Then they had to tell me that there were only 3 tickets and they were trying to figure out what to do.....I assured them that their dad would enjoy the game WAY more than I would, so it would be a boys outing.  Brent's also gave them some "gear" so they fit into the Broncos scene perfectly.

The game was Sunday.  They had a blast and they will not soon forget the experience.  Dillon was exhausted by the time they got home but it was well worth it.

Heading into the game....kickoff was at 2:05 p.m. 

Oh yeah....here is the Santa visit picture

Will this be the last photo I ever get with both of them and Santa??

The boys both got tickets to their favorite sports for Christmas so they are going to have the Professional Sports Trifecta here in Denver.  Luca received tickets to a professional hockey game (Central Hockey Leauge, not NHL) which is on Saturday December 29.  Dillon received tickets to the CELTICS basketball game when they play here in Denver....which is not until February so we will make a special trip up for that if we are home by then.  The tears that brimmed in Dillon's eyes when he opened this gift will not be something I soon forget.

These HUGE, FUN experiences; as well as all of our family bonding time will hopefully result in some fond memories of our time in Denver.....instead of just all the scary, sick, hospital stuff.

Day 97.....Merry Christmas

Tuesday, December 25, 2012

We are ticking along.  I have been consumed with family time so have not taken the time to blog.  Know that we are all well, Dillon is the same and will go to clinic on Thursday.  We had a fabulous Christmas Day, which I will talk about more another day.

Happy Holidays, stay warm and healthy.

A gem from Nana

Celtics tickets from Santa

Luca checking out the game Dillon got him

Opening RC trucks from Pop

Luca's gem from Nana

 

Hockey tickets from Santa

Dillon admiring the truck Luca got him

Santa was soooo messy....the boys loved that!!

Silly Dad

Santa found us at Brent's Place, stockings and all

Amazing string art that Finn made for Dillon

Day 92.....the week of many pictures

Thursday, December 20, 2012

Everyone is still healthy and doing well here in Denver.  Dillon's belly is "behaving itself."  He is eating and drinking; not enough of either, as he lost another kilo this week and continues on overnight fluids; but he is enjoying food more and more every day.

We are anxiously awaiting the arrival of our fearless leader :))  We have missed Sean so much this past 2 weeks.  Some days it seems like we don't do anything, yet we are busy, and then other days it feels like we are running nonstop.....but 14 days without seeing Sean feels like an eternity.  We try to stay connected via phone so neither of us feels like we are  missing out on too much of the information and updates and life in general, but we are essentially living two completely separate lives and sometimes we each feel like we have no idea what is going on in the others' world.  However, oftentimes when I have time to talk he is smack dab in the middle of something and oftentimes when he has time to talk I am smack dab in the middle of sleeping.  We do our best and I think we both feel fairly well connected, but us Denver Buckley's are sure looking forward to a full week of Daddy time.


It snowed here yesterday, maybe about 4 inches.  Dillon immediately volunteered to sweep off our little balcony.  He had so much fun out in the fresh morning air, stomping around, making tracks, sweeping it off (we are on the fourth floor remember).  He probably swept it three times because he just kept going over and over it....I think with the intention of just staying outside in the crisp air longer, not with the intention of getting the balcony exceptionally "clean" (wink wink). 

Dillon sweeping the balcony one board at a time

Luca saw one of the Brent's staff outside shoveling sidewalks and off he went to lend a hand.  He stayed outside shoveling for an hour.....with a little respite of a hot chocolate break provided by one of the ladies from in the office.  It was so funny to look over our balcony and see this little kid, shovel in hand, big pile of snow next to him, sitting on a rock and sipping a steaming cup of cocoa.  Later in the day Dillon decided, after much begging from Luca, that he would go outside WITH snow pants and boots on to play a little (originally he had only agreed to go in his regular shoes and walk around on the clean side walks while Luca romped in the snow....but I think his kid energy and his love of the outdoors got the better of him :)).  With camera in hand. I followed them downstairs to witness the first snow play of this season in Denver.   You gotta see these pictures.  Pure, simple, complete joy.

nothing beats a walk in the morning snow with your brother

Dillon IMMEDIATELY flopped down in the snow.  His statement...."This is SO comfy!"

Pure Bliss....that grin stayed on Dillon's face the entire time he was in the snow

Do you guys make snow ice cream where you live?  My Mom grew up in Upstate New York and they ate snow ice cream as children and she passed that tradition along to Todd and I.....so of course as soon as my boys were old enough we began making snow ice cream, and that treat continues on to this day. In fact, it is one of the first things the kids talk about when it snows because you can only do it the first couple of days of fresh snow....it is a very time sensitive issue :))   The way we make it is this:  We get a bowl full of fresh snow, sprinkle it with sugar, add a few drops of vanilla extract, and a few tablespoons of milk.  Stir it all up and what do you have.......snow ice cream.  Luca was SUPER worried about Dillon eating any of the snow that he had shoveled.  Luca informed us that he had shoved so well that he had scraped the sidewalk with each pass of the shovel and that dogs pee and poop on that sidewalk and people spit and bugs crawl and cats barf.....I mean it is a really terribly toxic place, that sidewalk....so there was NO WAY Dillon was going to be able to have snow ice cream.  I ventured out into the yard and discovered that the snow was deeper in some areas than others, especially over the grass.  I gave Dillon the okay to gather some of that very top layer of snow for his snow ice cream.  I headed back upstairs to grab a container for Dillon's snow.  As soon as I was inside the apartment I could hear both kids screaming.......in a panic I ran to the balcony and looked over.  They were calling me to tell me to just throw the container down over the railing....and so I did.  They very carefully scraped off the top layer of those yummy icy flakes and raced up to the apartment to make and consume their ice cream.  It was a beautiful moment and I don't think Dillon ever enjoyed his snow ice cream so much.....maybe the possibility of not getting to have any made it that much more delicious.

It stayed in the 20s all day so the snow did not melt.  This morning Luca begged and pleaded that I go out with him for a snowball fight (he actually wanted to do it last night after dinner when it was pitch black and about 4 degrees....sorry little buddy).  So I started getting on my snowball gear and Dillon suddenly jumps up off the couch and says..." I wanna go too!!!!!"  So Luca and I relaxed our expediency of getting ready to give Dillon a chance to finish his pills and get his gear on as well.  Out we headed.  Turns out the boys had pretty much tromped through all the "good snow" yesterday.  I suggested that we hop in the Cruiser and drive over to the hospital where there are little rolling hills out front and a big huge lawn.  YEAH!!!!!  I grabbed water and snacks and off we went....unfortunately I did not grab a photo capturing device.  Anyway, we all stomped and rolled and piled and jumped and ran and threw and dodged and completely immersed ourselves in our play together....right there in the front of the hospital with traffic going by and sick kids inside....we lost ourselves and at that moment we were the only three people in the world. 

Day 90.....this feels like a HUGE important number

Tuesday, December 18, 2012

The countdown in on.  Ten more days until the magic DAY 100

Ever since the initial consultation at Children's Hospital Colorado, Day 100 was hung out as a carrot.  After day 100 meds start being reduced.  After day 100 there is less danger of life-threatening infection.  After day 100 the new immune system begins to ramp up its function.  After day 100 there is the possibility of GOING HOME!!!!!   (As I have stated, with Dillon's gut GVH and the steroids and such we are looking at more like day 120 to 130 for going home....but still.....the countdown is on!!!!)

Dillon had clinic today.   We had to be there from 11 a.m. until 5 p.m.  UUHHHGGGG.  Every three weeks he receives these two infusions that just take forever....but they are part of the life-saving cure so we grin and bear it.  We actually had a good time.  We ate lunch, Luca read to me, I read to Dillon, there were various video games, we played Frog Juice (which Miel got us hooked on while she was here), watched some classic Tom and Jerry cartoons.  Other than being trapped in a tiny little hospital room we had a pleasant and relaxing day.  

Dillon's counts are all great except for his liver.....which is presumably taxed because of the PILE of pills he has to take.  We got to discontinue one of his meds today....YAHHHOOOOO!!!!  This is going to be a more common occurrence over the next few weeks.  His steroid was cut in half again so now he is only on it once a day in the morning, which will hopefully help with the insomnia that he has been experiencing.  We continue the IV med that is an antifungal and the overnight fluids at home.

We "celebrated" our discharge today by going out to dinner.  Dillon has lost yet another 2.2 pounds or 1 kg and the doctor told him that he needs to try to focus on meat as his protein source if he can.  The only meat that Dillon has been willing to eat lately is baby back ribs.....and you all know his obsessions with super garlicy Caesar salad.....so off to Outback we went.  The other "rule" the doctor made for Dillon was that when he gets full he needs to "force" 2 more bites.  His stomach is so small and shrunken from the 2 months with no food that it needs to be trained to tolerate a quantity of food large enough to sustain his body weight.  So Dillon ate and ate and ate this evening....enjoyed every bite.  We laughed and talked and had a ball.  Luca was so enthralled with his hamburger that he wrote a note to the cook and folded a dollar bill into it as a tip.  He gave the waitress very strict instructions that this note was to go to the man who cooked HIS burger.  Shortly thereafter we were then presented with the check.....that was already paid!!!!  The waitress, with tears in her eyes, said that we were such an amazing family and that the boys were so cute and well behaved that she took care of our bill for us.  The generosity of people will NEVER stop amazing me. 

Tomorrow we get to see the dentist....oh joy!!!!!  I HATE going to the dentist and I am not a particularly nervous or fearful person......so I can just imagine how Dillon is feeling (actually he needed medication to get to sleep tonight because of his ruminations about the appointment tomorrow).  He has some gray spots on most of his teeth, which they think is a side effect (yes another one) of some of the treatments but we are going in just to make sure they are not early cavities that need attention.  Of course drilling and scraping of gums and teeth is HIGHLY discouraged because of the chance of infection, but if the case is severe then we have to weigh the risks versus the benefits.  The complexity and far-reaching effects of what Dillon's body has been through continues to overwhelm me.

I think that we are now all caught up.....did I leave anything out.....do you have any questions?  For those of you that have trouble posting comments just shoot me an email....I am always happy to respond.

Until next time.....HUGS TO YOU ALL!!!!!

Oh yeah.....one more thing.   Tonight was my sweet loving husband's debut as the Jazz Ensemble teacher at Santa Fe Waldorf High School.  Sean, I am so very proud of you and your musical talent and love of sharing that with kids.  You amaze me every day and your little family supports you in moving into the direction of a more spiritually fulfilling career.  You are my rock.  I love you more every single day.  We are blessed to have you as our man, our leader, our provider, our nurturer.  GOOD JOB SEAN!!!!  You deserve the world knowing how amazing you are!!!!!

Days 85-89......it was fun....and then.....

Tuesday, December 18, 2012

We had 2 days of pure fun and pleasure.  We went to the movies, we shared meals, we watched TV and relaxed on the couch, we talked, we went to the Denver Children's Museum (pictures below show all the pretending and playing and thinking they did).....

Miel checking in Dillon's dog at the vet

Dillon building a boat out of recycled trash

Luca takes on the dairy cow

Luca cooking us a pizza in the wood oven (the pizza and about 10 toppings were all felt)

Luca getting ready to perform surgery on a puppy

all three kids in the fire engine

Miel as the secretary at the vet place

Miel as the cashier in a grocery (she would then run all the stuff from people's carts back to the shelves)

Little cow ride

Two full days of glorious visiting, laughing, activities, and fun........

and then

Saturday morning Miel woke up with a funky tummy followed by an episode of vomiting.  Todd and Miel were immediately quarantined to their little room at Brent's Place (which is just around the corner and actually shares a wall with our apartment).  We hoped and prayed and crossed our fingers that it was something she ate and that in a few hours she would be good as new.  That was not the case.  She became more ill, lethargic, exhausted, and then the diarrhea set in.  ARE YOU KIDDING ME????  My brother and his daughter drove for almost 10 hours on wednesday to get here after having cancelled their original visit that was to be around Thanksgiving and now this poor kiddo is sick.  The soap opera continues.  First Sean, then Luca, now Miel. The story actually ends with Todd getting sick on the drive back to Montana.  So far Dillon, Luca, and I don't seem to have caught the bug that they had.....keeping our fingers crossed and monitoring everyone very closely.......ANYWAY........

So Todd and Miel spent Saturday and most of Sunday locked up in their room, eating belly friendly foods, napping, bathing, and watching lots of T.V.  By Sunday mid day she was feeling quite a bit better but we have very strict precautions and doctors orders that people with viral or bacterial illness cannot be around Dillon until they are symptom free for 48 hours....basically that is how long it takes the body to clear the active virus or bacteria from a contagious state for the most part (there are exceptions but we have to live in the real world).  So even though she was better enough to want to play we still could not hang out in the same room.  The three kids were totally bummed and Todd and I tried to keep up their spirits but we were all very disappointed, obviously.

To help keep our spirits high and to celebrate our time together we did do an impromptu locationally-modified (I know, I know, that is not really a word but it sounded so good)   Christmas gift exchange.....we propped open the door of our apartment, Todd and Miel both wore surgical masks, as did Dillon, and everything that was exchanged through the door was sanitized with bleach wipes.   It was very unconventional and not as intimate as we would have liked but it was fun and I reminded the kids that it certainly was more fun than receiving the gifts in the mail.   Two great days out of five is definitely better than no days at all.  We all agreed that we were grateful for the time we were blessed with given the situation in all of our lives (Dillon's life threatening illness and then the horror of the shootings in Connecticut make us all so humbled and grateful for every moment that we are able to share).  Below are the photos of the funny hallway Christmas.

Can you see the big smile on her face behind that mask....look at her eyes, they say it all!

Here is Dillon's big mask smile....his eyes are dancing too!

Hey look, a smile without a mask.....but look at those eyes as well.

 

this one shows how Miel's chair is outside the door (that chair stays in the hallway sitting area).

Dillon checking out the human anatomy books and DVD that Todd gave him.

Miel in her new velvety dress that her daddy gave her (see him in the background with his mask on?)

Luca had asked his Uncle Todd for deer or elk antlers for Christmas......

See the dead deer with his tongue hanging out??

Todd and Miel admiring the little diorama I made as their gift....

it is a girl skiing down a powdery slope....a gift card was attached so they can build some more memories on the mountain this winter

Todd and Miel left on Monday morning.  They planned on hanging out in Colorado another day with some friends but when Todd started feeling the funky tummy they decided to call it quits and head on home.

If I have learned one thing during this journey......it is gratefulness for every moment in life, no matter how small.  So I don't feel the heavy heart that one might expect as a result of our interrupted visit.  I got to hug my brother and my niece, I got to look in their eyes, hear their voices, and see their smiles.....life is good!!!!

Day 86......Uncle Todd's special love

Friday, December 14, 2012

My brother is well known for his hair.  First of all it is super thick and super curly.  It has been anywhere from very short to half-way down his back in a mass of dreadlocks.  This guy has some serious hair history.  He continues this story of love and support with the below events that he shared with the one and only Big D.......

Todd tickling Dillon with his long curls

Check out these golden locks....Rapunzel would be jealous!

Uncle Todd getting ready for the next step......

Todd has not had his hair cut in close to 5 years and this pile of curls is headed to Locks of Love in Dillon's honor, which is a program that makes wigs for kids.  This was an amazing, heart-warming, playful experience for each one of us.  Several of the Brent's Place staff were on hand and shared in the experience with us.

Of course.....Luca had to get in on the fun.....

 

The funniest part....Dillon now has MORE hair than both of them!!!!  Hahaha!!!

Day 85.....Todd and Miel

Saturday, December 15, 2012

Todd and Miel arrived safe and sound last night (Wednesday) at about 1 a.m.  It was a very long day for them driving all the way from Montana, but Miel and Luca were super excited to see each other even in the cold wee hours.  Dillon remained in bed....getting his beauty sleep :))

A couple of the special gifts that Todd arrived with are pictured below.  He is well-known in our family for sentimental, hand-made, nature-based gifts that are true treasures. These gifts will be held close to the hearts of my boys for a lifetime.

Todd holding up the fish mobile He and Miel made for Luca.  This one has sticks found in the Yellowstone River and the fish are from deer hide that Todd shot, ate, and dried himself.  Now each of the cousins has one of these unique, one-of-a-kind, hand-crafted mobiles

Hand-made moccasins that Todd sewed by hand from the deer that he hunted and processed.

Several pounds of deer and elk meat are sitting in my freezer, as well as veggies and fruits from their garden in Montana.  These are just the first of the packages that Todd and Miel arrived with.

We all went to the movie with a group from Brent's Place.  It was a special treat because it was the first group movie Dillon has been able to attend and also a fun activity that the cousins have never shared together.  Memory building abounds.  Naps and an afternoon of free-time/play and an evening meal together rounded out the first day.  The infectious laughing of these three is enough to heal any ailing spirit!

Prayers and Healing

Friday, December 14, 2012

We are sending out prayers, white light, angels, and healing to everyone touched by and involved in the recent school shooting.  My mind cannot comprehend the terror, the heartache, the fear.  May each and every one of you feel the love and support that the rest of us have for you.  I am so sorry for your suffering and sorrow.

Day 83.....more fun

Tuesday, December 11, 2012

I thought I would share some more of the fun stuff that has been happening around here.

Remember we were taking pictures of signs with family member's names...Mom, this one is for you :)) AND we actually ate there

This owl was in my parents' back yard the other day.......WOW!!!!!

This next photo needs a story......

On Sunday Sean made a homemade pumpkin pie....I think I told you that already.  We obviously HAD to have whipped cream to go with it, of which we had none.  So after our fun and yummy dinner out on Sunday evening, we stopped at a grocery store to pick some up.  Dillon and I waited in the car while the wild ones ran into the store.  Dillon and I sat chatting while we waited......and suddenly out of the corner of my eye I see some lunatic running full speed through this icy parking lot in the dark.  Dillon becomes hysterical and then I realize....the MANIAC IS MY HUSBAND.......full on running with a grocery cart.   Not just any grocery cart I tell you.....it is one of those ones with the little car attached to the front that is big enough for about a 3-year-old.   Guess who was CRAMMED into that tiny little car driving that thing like he is in the Indy 500, none other that Luca the Great.   THEN......Luca could not get out of the little car...mind you it is about 10 degrees and windy.  Do you think his dad helps him out of the car......HECK NO....he just stands there laughing his head off while the kid is trying to crawl out onto the icy asphalt.  Oh my Lord Dillon and I have not laughed that hard in ages........all the while my mom is on the phone with me trying to figure out what the heck is going on.  Good times......Good times!!!!!!!

Maniacal race car driver

Today Luca got a long awaited promise fulfilled.  He got to play hockey with Sean, who works at Brent's, and is a very accomplished hockey player.  Check out these two speed demons....

Sean gave Luca a great lesson on passing and stance

Luca is over the moon happy....he loves to be on the ice

Face off

Tomorrow we are going to the candy cane factory and waiting for Todd and Meil to arrive (around midnight if all goes well....yawwwnnn :)))  We can't wait to see them!!

P.S.  All of Dillon's labs on monday were PERFECT!!  Kidneys, liver, white cells, red cells, platelets, medication levels.  We don't have to go back until next Tuesday....YAHHOOO!!!  Still battling with the belly, the fluid and food intake, and this pesky rash on his body....but other than that....we are definitely on an upswing!!