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!!

Day 81.......family activities

Sunday, December 9, 2012

We have been having such fun together that I forgot to post on the blog.  Sorry about that....I know that many of you check daily and have probably been waiting every day for an update......

Dillon's morning nausea is continuing but a bit less severe (meaning, he does not vomit every morning but he feels sorta cruddy every morning) but on occasion he is more nauseous and the morning medicines can be a huge challenge.  It could be his GVH rearing up after a decrease in his steroid, it could be a virus or bacteria of some sort (maybe the one Luca had), it could be his gut just adjusting to the healing process that is happening as the treatment for the GVH continues, it could be reflux that happens because his tummy is so empty in the morning after eating such small dinners.  Soooooo....we wait.  If it continues, we might go up on steroids and see if that helps.  If it worsens, we might have to get another endoscopy to check the progress of the healing of the GVH inside.  If it is a bug, then we have to monitor closely for fever and further signs of infection.  All the while his food intake is a major concern regardless of the cause of the nausea.  At this point, he is borderline on his weight as far as needing to implement some sort of intervention (like restarting the overnight TPN).  He is trying his best to eat as frequently as he can without upsetting the balance between nausea and hunger.  He is still on the overnight fluids that have a bit of dextrose in it to maintain his blood sugar levels and hydration overnight. 

At Luca's urging, Dillon has begun playing a little basketball outside.  Up until just a few days ago he did not even want to go outside and dribble the ball let alone play......so that is a huge deal for his spirits and his body.  Of course, he tries to play and play and play and I have to be the bad guy and make him stop before he works himself into a stupor.  It seems I am the big bad wolf on most fronts these days......"take your pills, drink your water, eat your food, do your mouth care, take more pills, moisturize your skin, take a shower, cut your nails, take more pills, go play, stop playing, get up so you have energy, sit down so you don't use all your energy....blah blah blah blah blah."  The kid never seems to get a break.  We are coming up with a check list so that he can be more responsible for what needs to be done and I can stop giving so many directives. 

We went to a motocross/dirt bike track yesterday and watched some people practicing.  It was cold and we had to walk up a big hill; Dillon managed just fine at a slow pace and Luca and our new friend, Fabian, ran.  There is a family here who has a 2-year-old in treatment and she has an older brother who is Dillon's age.  Poor kid is bored because his mom is really involved in the baby's care, so we have sort of adopted him and have included him in some of our activities.  He is very sweet and well mannered; his personality is very similar to Luca's so there is a lot of energy and laughing.

On friday night we went to the outside ice skating ring that Luca and I went to a couple of weeks ago.  Sean and Luca skated and Dillon and I watched from underneath one of those outdoor heater things.  It was fun and beautiful.  A cold, crisp evening with lots of lights and music coming from overhead speakers.

Today I got my birthday massage (a joint gift from Brent's Place and my dad....THANK YOU DAD AND ALLAN).  It was relaxing and I enjoyed it, although the place was very fancy and I felt a bit out of my element.  When I got back the boys had cleaned the apartment, made a homemade pumpkin pie (THANK YOU MOM for the pumpkin and the spices), and then we put together our new little tree in a box.  We are not allowed to have any live or cut plants, flowers, or trees so we broke down and bought a 4-foot tree at Target.  We just could not bear to have Christmas here in Denver with no tree.  It is really cute and the boys had a blast decorating it with the smell of the baking pie and the Christmas carols playing........just like they do at home.  We bought ornaments but Sean is going to bring up our box of personal ornaments on the 22nd when he comes back next time, so then it will be even more special.  We have an ornament for every year since the kids were born.  We are going to go out for pizza tonight at a place that Sean and I have been to in our past lives (pre kids) when we lived in Colorado Springs.  We wanted to do the zoo lights or the botanical garden lights but it is only 20 degrees and Dillon's system just cannot tolerate being too cold for too long.  We might go to the zoo during the day just to visit the animals and skip the nighttime light part.  On Tuesday Luca is going to play hockey with the director of Brent's Place and on Wednesday we are going to the Hammond's candy cane factory tour. 

Dillon and Luca in front of our little tree

Oh yeah.... the other day one of the Brent's employees told Dillon he had a surprise for him.   He showed up with the cake that is pictured below.  Apparently a culinary school was having "cake decorating day" and they donated a bunch of practice cakes to Brent's and one of them happened to be Celtics.  They immediately thought of Dillon and gave it to us.  Turns out that class needs to work on their cake baking skills a bit.......although the decorations were obviously super cool   :)))

Paul Pierce jersey, one of Dillon's favorite players

Tomorrow Sean is leaving.....Luca is staying.  We have clinic at 11 a.m. with blood work and an evaluation of this darn tummy.  He has still not needed platelets or red blood cells since his original discharge from the hospital on day 35, which I think is FANTASTIC AND AMAZING. 

Day 77.....Seriously????

Wednesday, December 5, 2012

On Monday morning Luca woke up complaining that his tummy did not feel right.  My parents came to the apartment a short time later to say their goodbyes as they were heading back to Santa Fe after a nice weekend together.  As I ran some of Dillon's blood samples to the clinic, Nana proceeded to make Dillon some eggs and watermelon.  Luca refused breakfast....hummmmm...this is not normal at all.  By the time I got back to the apartment my mom was in the process of cleaning up the couch and the floor and the coffee table....you guessed it....in the mere 30 minutes that I was gone Luca's "not right tummy" proceeded to spew all over the place.  On the inside I am screaming........ARE YOU KIDDING ME?????  SERIOUSLY???? THIS HAS GOT TO BE A JOKE!!!!!!  On the outside I comfort my slightly green boy.....although he claimed he was completely better after throwing up what looked to be last night's dinner.  We had previously discussed on many occasions that if he were to be sick at home he would have to miss a visit and he if were to get sick here he would have to go home early....so he was definitely trying to convince me...if not himself.....that he was fine now and absolutely did not need to leave Denver.

After some tears and lots of hugs, Luca conceded and was swept away.  My folks returned to a hotel room (which they had just checked out of) to give Luca's belly a day and a night to see if it was just something he ate or if it was in fact a contagious illness of some sort.  After several hours of feeling "okay" and even swimming, he retired to his roll-away bed in the room and was very nauseous most of the night.  He never did get a fever and he did not vomit any more but the decision was made that he indeed needed to return to Santa Fe to recover and to avoid spreading his illness to either Dillon or I (hoping that we had not already shared the germs beforehand.....cross all your fingers!!!!)  My sweet and courageous Luca made this statement to me on the phone before his departure to Santa Fe...."Mama, I feel pretty good and I did not throw up any more but it would be safer for me not to be around Dillon right now!"  He wanted to come to the apartment for a final hug good bye and he even offered to wear a mask so he would not breathe on his brother.  During the hugs with me he told me this....."Mama, I am a little bit sad and a little bit happy about going home....I can't wait to see Copper (our cat) but I will miss you and brother."  Ahhhh, that boy never ceases to amaze me.  He will return on Friday with Sean if he is officially better....besides, he needed to get his hockey stick so he could go skating with a guy that works here at Brent's Place :))

Dillon has been showing some vague signs of his gut GVH rearing its ugly head.  The past 5 mornings he has vomited shortly after arising.  He has phlegm in his throat and he clears it constantly throughout the day and his appetite is wavering.  These are all reminiscent, albeit less severe, of the GVH before it was identified and treated.  This all began before Luca became ill so I don't think that Dillon has the bug that Luca had, but I will keep a very close watch to see if the symptoms progress and are more consistent with an actual illness than with the GVH.  I have not talked with the doctors yet about my suspicions but I think that their response is going to be to go back up on the dose of steroid until the symptoms settle back down.  My understanding is that "curing" GVH can be a bit of a seesaw like that...start with a dose, go down a few times, symptoms crop up so go back up a little, give it a week and then go down again.....etc.  Each person is different in how quickly their gut heals and how sensitive they are to the symptoms that can recur when the steroid is lowered. 

As a result of this jumpy belly, Dillon and I had a totally mellow day at the apartment together.  We read, we did flash cards, we wrote letters, and we started a puzzle (which Dillon absolutely had no interest in but when he saw that I was going to do it without him he decided to help and he ended up enjoying it a lot) :))

Sean and Luca will be here for the weekend.  Luca is actually going to be staying for an extended period of time, probably until he has to go back to school after winter break, which ends January 7.  Hey, lots of kids miss 2 weeks of school when they get a bad flu....besides, we do lots of learning when we are together and having Luca feel more emotionally connected is a much bigger benefit in his life than missing his class play and a few other events at school.  When I talked to him about what he would be missing at school (I wanted to be sure he understood the gravity of being out of school for several weeks) he told me...."Mom, that is just friends and school.....THIS IS MY FAMILY!!!"   Enough said.

My dad arranged for me to get a massage for my birthday, which has not happened yet because things have been crazy here....have I said that before???  I don't know where all the time goes!  Anyway....while Sean is here I plan to cash in on that gift.  My back can't wait :)))

Still praying for snow...how about you???

Day 74.......

Sunday, December 2, 2012

Things are moving along.  Dillon's labs showed that in less than a week his body (with the help of the new super strong antiviral medication) has already cleared the CMV virus that I talked about a few days ago.  The doctors are shocked...as usual.  Mr. Pickle is true to form and gives them the unexpected.  A lot of kids take weeks to clear this thing and my boy does it in a few days...HAHAHAHAH...tell that to the researchers!!!!  The bump we hit on friday is that his stool cultures grew out Clostridium difficile, which is a bacterium that causes cramping and profuse diarrhea.....of course the Pickle has had neither.....hummmm, do you see the trend with this boy???  So another med is added to the list...that makes 23 pills every morning with 2 hours of infusions plus the steroid push and then 15 pills at night.  Good Lord if that boy has to swallow any more in a day he is going to SCREAM!!!!!  Drinking has become a chore and he is not taking in enough.  I think it is a mental challenge because he is forced to drink so much with all the pills, that during other times in the day drinking is just not appealing....so that means we are back on overnight fluids (not the nutrition part with fats and carbs and stuff but just a nice balanced saline with some electrolytes in it to keep him from getting dehydrated, which stresses his kidneys).

On to better things.....

Nana and Grampy are still here and tonight we drove to downtown Denver and rode a horse-drawn carriage around to look at Christmas lights.  We all agreed that the lights were not impressive but riding around, hearing the clip-clop of the horses hooves, chatting together, and feeling the cool night air on our faces while our hands and feet were warmly tucked under a blanket was really fun.  We then went out to a fun dinner of appetizers and desserts at The Cheesecake Factory.  It was super fun and relaxing and we all enjoyed ourselves on our last evening together. 

Dark picture but you see me and the boys in the carriage (Nana and Grampy were on the backward seat)

I have had a few people asking if we will be home for Christmas.  We will definitely NOT be home for Christmas.  Day 100 for Big D is December 28 and with the recent setbacks of the 2 viruses and the original setback of the gut GVH we will realistically have to be here until day 120 or so, which will include a surgery and recovery of removing his Broviac and port.   Of course.....as we talked about above, Mr. Pickle will probably surprise us all so who knows when we will be "released."

Oh yeah, I almost forgot.  Luca needed some "big boy time" with Mama so we went on a little adventure yesterday afternoon.  We found the outdoor skating rink in downtown Denver (it is like a little version of Rockafeller Center which was a highlight for Luca on our New York trip).  It is free if you have your own skates.......so off he went.  There were tons of people, most of whom clearly did not have much practice on the ice.  In true Luca fashion, he observed the others and proclaimed that he was indeed THE BEST skater on the ice.....and the fact that he had on real hockey gear made that statement oh so true :))))  A couple of kids and at least one parent stopped him and asked him if he did indeed play hockey and when he answered in his sweet and funny...."Well yeah" (and I just know he is thinking to himself.........can't you tell, I have on hockey gear...duhhh).....he was flying high.  It was great fun and he got his fill of Mama's attention for a few hours.

That is one good lookin' kid!!!

Luca tearing it up on the ice.