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.

Day 71.....and day 14590

Wednesday, November 28, 2012

My day 14,590......My 40th Birthday.  I was surprised by an abundance of emails and texts and phone calls from family and friends.  Thank you everyone for that....it was special and fun!!!  My sweet husband had a birthday cake delivered to the apartment.  The kids were in on it and I had NO idea....they are so sneaky.  We had a lovely dinner of sushi takeout from Whole Foods and a movie in our snug little apartment.  Another surprise came when we looked out the window and every tree surrounding Brent's place was ablaze with a multitude of colorful Christmas lights.  A crew of guys worked on it all day long and it is spectacular.  I had a lovely day.  I was so at peace and had such joy in my heart to have my boys with me all day.  They were sweet and loving (as usual).  I am feeling good.  I feel stable.  I am drinking my smoothies, Luca and I are exercising a bit.  My life feels sorta "normal" right now....waking up to whispering kids in the other room, everyone wanting something different for meals and having to negotiate, the laughing, the bickering, the chaos (making dinner, one kid in the shower, one doing something else and both needing help at the same time, and the phone ringing all at the same time)....that normal mother stuff feels SOOOOO good!!!  I have had some time to read since Luca got here because he keeps Dillon busy.  The boys are also engaged in helping me with the cleaning....we each have specific job assignments.  We are also doing some schooling stuff.  Luca is working hard on his reading.  Dillon is reading and doing cross word puzzles for vocabulary and spelling work.  This afternoon we are going to work on spelling, grammar, and penmanship in the form of thank you notes and letters to friends.  All of this makes me feel like my old self, like my family is indeed intact and moving along just as we would be if we were at home.  It is such a relief to my heart and the best gift I could have received for my day of birth :)))

Sean sent a chocolate cake with Cherry filling....yummmmmmm!!!!!

We had a big day yesterday in the clinic.  You remember Dillon had a PET/CT.  The outcome of that was SPECTACULAR, as expected.  It was completely clear....no evidence of cancer or other questionable activity.  So, ....our boy is CLEAR and HEALTHY.

The little bump (you know we just had to have something to keep it interesting...wink wink).   His blood work from Monday showed a huge amount of a virus called cytomegalovirus.  It is another one of those viruses that most of us have in our systems and with the steroids for the GVH (which lowers his immune system function) this has reared its ugly head.  He began treatment immediately, which is a very powerful antiviral.  They infused the first does yesterday in clinic after his PET/CT scan and they were able to order it for us to do at home twice a day for a couple of weeks.  They caught it early and the treatment began right away, so hopefully it will be controlled.  When this virus is not controlled it can lodge in the lungs, cause serious pneumonia and lung collapse and, worse case scenario is that it can be fatal. It is very serious, we are watching Dillon's symptoms very very closely, but hopefully jumping on the treatment early will avoid all of those complications. Only time shall tell.

I wanted to share a really cute picture of Dillon....not only does he look happy but you can see the little fuzzy hair that is coming in on his head.  His hair gets "longer" or more dense every single day.  Seriously...he gets up in the morning looking different every day.   His lashes and brows have fully re-grown so his face looks more like himself.  The other thing that is finally growing are his fingernails.  They were so severely damaged from the chemo that they may fall off but the part up next to his cuticle is growing in healthy.

Look at all that hair...and the brows and lashes are so full and dark!

can you see that white ridge up by the top part of the nail? That is were the old nail may fall off.

This ridge is very pronounced...can you see it about 1/3 of the way down from the cuticle?

 I gotta go wrangle these boys into the shower before we head out for a movie this morning.  Did you know that if you go to a movie at 11 a.m. on a tuesday or thursday you are likely to be one of only a handful of people in the theater???

Nana and Grampy arrive today for the weekend.  They are so SUPER excited to see the new and improved Dillon without the nausea and vomiting and with the ability to eat, laugh, walk.....we will enjoy some holiday activities and some lovely meals together.

Day 68....more changes

Monday, November 26, 2012

Today Dillon's clinic appointment went very well.  They have decided they are not going to worry about the rash....i.e. no biopsy needed (Dillon was so super happy to hear that).  They don't think it is GVH and unless it develops into something more than it currently is, they are happy with us just scrubbing and moisturizing to keep the dead flaky skin at bay.  His counts were FANTASTIC!!  He was scheduled to have an infusion of a super strong antibiotic today (it happens once every 2-1/2 weeks) but his white blood cell count, hemoglobin, and platelets are so good that they have discontinued that and put him on a much more mild (read as...fewer side effects) antibiotic that he only has to take 3 days a week.  Dillon's blood pressure continues to creep up and stay up so they had to start him on a very low dose of an antihypertensive medication.  If you recall, the blood pressure increase is directly related to the IV steroids so as those get tapered over the next 6 to 8 weeks so will this blood pressure medication.

The biggest news today......

NO MORE TPN!!!!!!  The grin on my boys' faces, when the doctor praised his efforts at eating and drinking and then made the announcement that the TPN was to be stopped immediately, and the breathless "YES" that his brother uttered with the classic fist pump was PRICELESS.

Ahhhh the joys of having the support and love and encouragement of Mr. Luca Bear.  Dillon is truly a different kid with him around.  He is...if I can be so bold as to say....more normal, more himself, more a kid.  Luca would stay forever if we let him....hummmm, I wonder how Sean would feel about that....hehehehe. 

Messing around with the super fun game that Thane sent.

We are planning to go see some holiday lights and do some other fun stuff this week.  Nana and Grampy will arrive on Friday for the weekend.  Sean is back in Santa Fe with his nose to the grindstone for the week without Luca....hopefully he remembers to have a little fun and to sleep :))  Everybody here in Denver is still healthy, so I think we avoided disaster this time with the illness that Sean brought with him...whewwww...now we have to tackle cold and flu season.

Everyone stay healthy, stay connected, and pray for SNOW!!!!

Day 66....Smooth sailing

Saturday, November 24, 2012

It is like a new life here at Brent's Place.  Dillon is eating, playing, laughing, taking all of his meds without much trouble....not vomiting, not napping, not having nausea.  Yesterday we went to GameStop to trade in a couple of games that he does not like for his DS that the hospital gave him.....then we went into target and he tried on several pairs of pants because he currently only has 2 pairs that fit.  This is such a huge deal....even at his best Dillon truly dislikes trying on clothes of any sort, even things that he loves and desperately wants to own.  The past 2 nights I have chosen not to hook up his TPN because he has eaten several times throughout the day, including regular meals with the family and even a bowl of popcorn last night during a movie.  An absolute Dillon classic favorite is Caesar salad with homemade dressing (a modified version without the egg yokes, as he is not allowed to eat raw things)...this dressing is super garlicy, has plenty of anchovy, and is creamy.  He has had that 2 days in a row.  He takes a Tums beforehand to offset the possible garlic heartburn-type symptoms.

Sean has been well...better than well.  All the extra sleep at his parents' home has done wonders for his energy....he is having a great time here with all of us.

We might go to another movie today.   Cousin Miel told us that Wreck It Ralph is a great movie so we might go do that. 

Today's big announcement......Luca is going to stay with Dillon and I for this entire week.  He has begged and begged for a 2-week stay.....his main agenda is that he wants to be with me for my birthday, which is Wednesday.  So Sean is heading home tomorrow and I get to keep my 2 little chickens.  Denver has tons of holiday lights and activities and I thought we could do a few of these now (early in December) before they get too busy and crowded and unsafe for Mr. Pickle.  We are all looking forward to the fun.

Dillon has lab work Monday and a clinic appointment.  They will check all of his levels and re-inspect his rash (which is the same as before, no change at all...which is good right...it is not worse).  On Wednesday he has his PET/CT scan...which he HATES because they have to access his port (you all remember the needle trauma at UNM so long ago).  It will be great to have Luca here to distract him and keep him company.  The reasoning behind the PET/CT is essentially a final check to make sure that there is no cancer activity anywhere in Dillon's body.  No one thinks there is and no one expects to find anything but after his crazy start to this whole journey they just want to be triple sure that he is all clear.

Hey...a special shout out to THANE.....we got your package...AWESOME and we will be playing both of the games  today.   Thane, you are such a special friend and we miss you terribly!!!!  We look forward to playing some basketball with you buddy!!!!

Day 64....Happy Thanksgiving

HAPPY THANKSGIVING!!!!

of all the years in my life this one is the one that I have the utmost thanks for everything in my life.  My boy is healing, my family is intact and connected and supporting each other....and then there is all of you out there sending light and prayers and energy and angles and good wishes and all the powerful feelings that come with supporting us...so THANK YOU THANK YOU THANK YOU !!!!  We truly feel the most blessed this year.  We cannot say enough to all of you supporters.  You have been an integral part in helping us get through this journey and we will be forever grateful to each and every one of you!!!

Thursday, November 22, 2012

Sean is back in Denver today.  Our sweet little family gets a long weekend together.....sigh....we all need that so much for ourselves individually and as a cohesive unit.

Yesterday Dillon had a quick clinic appointment (which was not scheduled but they asked us to come in) because he developed a full body rash.  The outcome of the visit was a list of reasons why the rash could be happening:  It could just be sensitive skin. It could be GVH of the skin, which is concerning because he is already on treatment for the gut GVH and if it the skin is breakthrough then it could be a very strong case. It could be an allergy to a new med he started on the day he was discharged. It could be the beginning of a viral infection with a cold or flu being the most likely (apparently in some immunocompromised people the first sign of trouble can start with a skin rash).  SOOOOOO we have a plan...basically it is a process of elimination.  Take care of the skin with moisture to help the sensitivities, stop the new med and switch it a different one, watch the rash carefully and if it gets worse start a steroid cream on the skin which could lead to a biopsy for confirmation of GVH, and last but not least is watch for other symptoms that might be signs of a cold or flu (the treatment of which is still unclear to me...do we manage at home or is it an automatic readmission to the hospital).

Dillon had been to the Bass Pro Shop before his transplant and he just loved it.  It is like a museum.  There are stuffed animals and exhibits and games and all sorts of fun things at this store.  Yesterday afternoon he said he wanted to do something fun with Luca....so off to Bass Pro we went.  Dillon gave Luca a tour of the store.  They "rode" ATVs, they climbed in speed boats, they rode the clear elevator that goes through the middle of a fish pond, and the grand finale was the shooting gallery.  Dillon was up and on his feet for about 1-1/2 hours in all....it was amazing and fun....and he was completely wiped out by the end.   This morning his legs are sore from all that extra activity yesterday :)))

Dillon shot a mountain lion, an owl, a rat, a raven, and turtle...plus a bunch of other stuff.