Day +11

Sunday, September 30, 2012


Dillon's fever continued to rage.  Last night it was up to 105 and he was miserable.  The Tylenol that he was getting around the clock was hardly even touching the fever...it would go from 105 to 103 and just stay there hour upon hour.  Every muscle and nerve in his body is activated...he shakes uncontrollably and his skin is so extremely sensitive that just the lightest touch causes him discomfort.   Today they did more tests including a CT scan of his sinuses, chest, and abdomen to double check for some sort of infection source.  Good news.....nothing showed up on the scan, nothing showed up in his multiple blood cultures, and nothing showed up in his stool or urine....so basically the answer is....

His body is working very very hard, it gets aggravated and inflamed, and some people get a fever in that situation.  Dillon has been prone to fevers his whole life, so that is no surprise to me.  When he was a toddler I used to say that he would get a fever if he stubbed his toe.....so they took my motherly knowledge and administered ibuprofen.  In kids with compromised immune systems ibuprofen is a big NO NO because it kills off platelets (which are low already) so much so that it can be dangerous.  The answer for Dillon today was that he got transfused platelets this morning, then got the ibuprofen, and then got more platelets this afternoon.  They decided (with my input about his difficult fever history) that the risk of platelets getting depleted was lower than the continued extreme fever.  GOOD NEWS.......the fever is controlled right now.  I am crossing my fingers that it continues to stay controlled overnight so this poor guy can get some rest.  For the past 3 nights he had such bad chills and sweats and utter discomfort that he was not able to sleep.

His mouth and throat and esophagus continue to produce copious amounts of mucus, which cause him to cough and gag and subsequently vomit....but it is not bleeding at all any more and the pain is almost completely resolved. 

His nausea is also much better...not completely gone but controlled enough that it is not consuming his attention each day...it is in the background now I would say. 

So, after a rough few days we are currently on an upswing.  Even if this only last for the afternoon and evening it is a much needed respite from the intensity for all of us.

Sean and Luca went to the carnival in Santa Fe last night....don't they look happy??  Dillon and I are really really looking forward to their arrival on thursday evening.

Day +9.......fever

Friday, September 28, 2012

Dillon's pain has improved considerably over the past couple of days.  The mouth sores are visibly healing and the blood in the vomit has decreased.  He has, however, developed a fever of 101.5 in the past 12 hours.  This is pretty normal for a person with no immune system; but Dillon is very worried about it.  The docs gave him lots of reassuring words last night. They are not sure of the cause but are running multiple tests to see if they can identify the source.   They say one cause could be the mucositus because there were/are open sores in his GI tract, which naturally contains bacteria, and that without any immunity that bacteria can cause infection....just the normal flora of the body, the gut,the skin is an infection risk.  They started another antibiotic in the hopes of helping kill off whatever is going on.   Big D is sleeping much of the time.....his body is exhausted and worn down and his spirits are too right now....however....you should have seen his face light up when his Grampy walked in the door yesterday!!!!  My dad will be here for a few days, which is a much appreciated respite for me and a great boost for Dillon's mood, as well as my Dad's.  Even in the throws of a fever-induced confusion last night, when Dillon woke up his first question was...."Where is Grampy?"

Day +6

Tuesday, September 25, 2012

A quick note just so you are not left wondering....

Dillon is holding steady with symptoms.  Much much less nausea (not quite non-existent but completely tolerable).  Still not eating (which is to be expected...they say most kids don't eat for over a month, thus the IV nutrition). 

The main issue right now is still the incredible pain running from the tip of his tongue down into his esophagus.  They are very liberal with the pain medications and want him to be as comfortable as possible.  Of course, this means he is foggy and groggy.  He sleeps quite a bit during the day and usually rests well at night also.  Last night, for example, he was asleep by 10:30 (we stayed up late watching a football game as he had slept for a few hours in the late afternoon) and he got up once at 4 a.m. to pee and to get an extra dose of pain meds.  Then he wakes at about 7:30 in the morning.

On the schooling front, he is obviously lacking the energy or clarity of thinking to do much.....but our main activity right now is reading. I read to him out-loud and we discuss vocabulary and such (the book is too heavy for him to hold, his arms get tired very quickly).  We are doing crossword puzzles (which we do together but he also picks that up and will do that independently).  He is doing more crosswords than he is playing video games or listening to his MP3 player...a testament to his love of words (on his neuropsych testing he scored well into the high school level for reading and vocabulary) and also to his upbringing and education without an emphasis on media.  Even though the games are new and exciting, it is not engrained in his mind and he prefers to do other things most of the time.

I miss my family terribly now that it has been 2 full weeks since they left.  My Luca and I are reading bedtime stories either via Skype or over the phone so that helps us feel connected.  Sean and I chat on the phone pretty much every day....however, I am lonesome for their laughs, their smiles, their hugs.  I realize how much my parents are entwined in the lives of our little family.  It is such a blessing and a gift for all of us to have the closeness that we do, both in proximity and in emotions, support, and just day-to-day living.

Well, off I go to tackle this day....day +6.

BMT Day +3

Saturday, September 22, 2012

I have said this so many times but it is true yet once again.....three days have slipped by without me blogging.  I am sure you are all wondering what is happening.  Sorry about the absence.  Things are so busy and intense around here that pretty soon it is midnight and I am in bed and yet another day goes without blogging.

One thing that has happened is that Big D's nausea has decreased quite a bit.  He is still not feeling "normal" in his belly but the incessant, uncontrollable misery of extreme nausea 24 hours a day has eased....for now.  We are told that most kids begin their nausea and vomiting AFTER the transplant.  So we are holding our breath, wondering if Dillon was yet again just outside the norm and had his nausea and vomiting early....or if there is more to come just around the corner.

The other major thing that is happening right now is called mucositis.  It is the breaking down of his mucus membranes in his body, the main one being from his mouth all the way down his GI tract.  This presents itself as horrible sores in his mouth (which he had once before at UNM) but this time it is much more severe because of the radiation and it is going all the way down his esophagus.  A layer of the membrane is actually breaking down and sloughing off....which then ends up in his stomach and causes him to vomit the tissue and blood and mucus back up...which then burns his throat because of the stomach acid.  It is terribly uncomfortable and it scares him when he throws up so much blood.  He also has a fair amount of blood in his urine, as the urethra is also a mucous membrane.  The nurses say if we could look inside it would look like hundreds of paper cuts all the way down into his stomach and even into his colon and urinary tract.  This is obviously causing a significant amount of pain....extreme pain really.  The treatment is pain meds, which take the edge off and allow him to sleep most of the day.  There is no "cure" and there is nothing to help it heal.   Basically, he has to wait until the layer of tissue is finished sloughing off and then he has to wait for his white blood cells to heal it and for his body to grow back a new layer of skin on the inside.  His new bone marrow will not even begin functioning for about a month, which is where the white blood cells originate.....so it is a long road.  He is not eating or drinking at all and won't for several more weeks, they say.

You all saw the list of meds....well there are 4 more added to the list now.  It is a never ending flow of substances into my boy's body via his central line.  There are only about 45 minutes during each 24-hour period that he does not have something flowing....and that is the window of time every afternoon that he has to get unhooked and take his shower. 

That is pretty much all that has been happening since the transplant.

Oh yeah....the way they count the days is like this.....

The day of transplant is called day 0....so today is day +3 (as in 3 days after he received his cells).  The very earliest that people get to go home (I mean home home, not to the apartment) is day +100 and that usually only happens if there are no complications or bumps in the road.  I counted on the calendar and day +100 is about a week past Christmas....so I expect we won't be home until January.  We are looking forward to enjoying the Denver snow.

Many folks are asking...."Shari, how are YOU doing?"  I am doing well.  I don't know how but I am really okay.  I am sleeping well.  My worry-o-meter is under control right now.  I am not working at all, so that piece of the stress puzzle is okay (other than that pesky little issue of not having an income).  I have had time to read this week....which has been one of my favorite things to do my whole life...so that feels really good and relaxing (in fact I treated myself to a couple of new books when D and I went do Barnes & Noble before we were admitted to the hospital).  Eating is a difficult piece right now.  I am not allowed to eat in Dillon's room.  There is one little room called the family lounge down the hall where I can eat, however, that is for all 10 families that are here....and only one family can be in there at a time...so if someone is in there, then I just have to wait or I have to leave the floor and eat downstairs.  The other piece is that I cannot have ANY fresh fruits or veggies on the floor...so to drink my smoothies I have to make them at the apartment, keep them in a fridge that is NOT on this floor (some other random fridge around the hospital) and then I have to go out of this area to drink them.  It is definitely a complication in the day and I need to work harder and practice more on how to make it workable. 

!!!!!!CELEBRATE!!!!!

Wednesday, September 19, 2012

Dillon has completed his transplant!!!! 

There are not words to describe the intense relief, joy, and gratitude I am feeling right now.  I have chronicled today with pictures......

Today is Dillon's second birthday....not the one that started his life....but the one that will continue his life.  We are forever grateful to the family who donated the cord blood of their child to make this day possible for ours.

take a look at this IV pole (whom remains nameless) there are currently 5 pumps

 

Dillon watching the doctors as they prepare for the cord blood cell transplant

This is the bag of cord blood/bone marrow cells.  It is 52 cc, which is less than 1/4 cup

Dillon's very busy IV pole with the cord blood hanging...see the red tube?

the nurse is hooking up the cord blood tube with the central line that enters into Big D's heart

See the red flowing through the tube...the first cells are almost to his body

It took about 45 minutes...and the bag is empty

This is the very end of the cells going into Dillon's body...almost done

Hooray!!  Transplant complete and sleeping peacefully

The day before....

Tuesday, September 18, 2012

Today was Dillon's so-called day of rest.  He was extremely sick today from the moment he woke up until he finally drifted off to sleep in an exhausted state of bewilderment.  This boy is so courageous and strong.  Between countless episodes of vomiting today, he took all of his meds and did all of his mouth care.  He is on an unfathomable number of medications right now and many of them don't come in an IV form....with all the technology and billions of dollars in the medical research world you mean to tell me that someone has not "invented" all of these meds in IV form so that people don't have to swallow them when they are extremely ill...are you kidding me??!!  This mouth care regimen takes almost an hour in which this child has to swish and swallow and spit and brush and wait and swallow more...three times a day....all in the face of a stomach that cannot even tolerate water....ARE YOU KIDDING ME??!!  And the rule about everyone takes a shower every day....NO MATTER WHAT...this boy could hardly hold his head up and the nurse is prodding him into the bathroom.  With tears streaming down his sweet tired face, my Dillon dutifully did as he was told...scrubbed his head, scrubbed his feet, and sat there trembling when the water was turned off.  I rushed in with a warm blanket and just bundled him up and got him back into bed.  I know there are rules and reasons for all of this stuff....good reasons....but my child is suffering so and pushing himself to the brink of existence and I just don't feel like taking a shower should be the thing that pushes him over the edge.

After a good long cry for both of us, we finally decided that in deed these days are terrible and long and uncomfortable and unbearable.....but we also agreed that after each one passes we are one day closer to going home healthy....FOREVER!!!  With shoulders slumped and big sad eyes, our loving boy asked for a hug and then dozed off to sleep.

Everyone wants to know what medications Dillon is on...so here it goes......

acyclovir every 8 hours
amphotericin B nasal spray twice a day (This spray stings so bad that it makes his entire face hurt)
acetaminophen every 6 hours
benzocaine as needed
calcium carbonate as needed
calcium gluconate twice a day
chlorhexidine gluconate three times a day
clortrimazole troche three times a day
cyclosporine for 2 hours IV every 12 hours
D5W+KCl every 4 hours IV
diphenhydramine every 6 hours
fat emulsion 20% over a 20-hour period every day IV
gabapentine three times a day
hydrocortisone sodium succinate as needed
immune globulin 10% IV daily
lorazepam every 6 hours
magnesium oxide as needed
meropenum every 8 hours IV
micafungin every 24 hours
nifedipine as needed for blood pressure
Sodium chloride normal saline continuous IV
nystatin twice a day
ondansetron every 12 hours
Phenol spray
potassium chloride
sertraline daily
TPN (IV nutrition)
melphalan chemotherapy
ATG
cytarabine
furosimide
methylprednisolone sodium succinate
Lasix
ranitidine
promethazine
packed red blood cells as needed
platelets as needed

Dillon is finally asleep so I am going to go to bed too.

May our white light, golden energy, and prayers be strong for us tomorrow!!!  

LAST DAY OF CHEMO!!!!!!!

Monday, September 17, 2012

YAHOO!!!!!!

Big D just finished his FINAL CHEMO FOR THE REST OF HIS LIFE!!!!!

Next step....CURE!!!!!!

Day 3 Chemo

Sunday, September 16 2012

Today Dillon was nauseous quite a bit. Not as severely as before and there was no vomiting.  He slept for several hours during the day.  He tried playing some games but his brain just is not firing properly so that was confusing and difficult for him. 

Here is a poster that the night nurse left hanging on our door this morning....the staff here are PHENOMENAL.

check out all the caped pickles!!! 

Luca's birthday fun.....FINALLY

Sunday, September 16 2012

I realized last night as I was fading off to sleep that I never posted the rest of Luca's birthday fun.....so here it is.

Go kart racing....high speeds, lots of noise....so much fun!!!

Ready to GO

Dillon, in the pits

On your marks....

Luca is SO excited

Sean buckling up

There they go

Also some photos of the gifts, cake, etc....

Hats that cousin Sophia brought from Brasil

Luca LOVES hoodies

Dillon bought Luca a pillow pet dog

Bar Harbor Tie-Dye Hoodie from Gramma and Pop

Mama and Luca

We had an amazingly fun weekend and really enjoyed each others company.....

Sigh of relief.....day 2 chemo

Saturday, September 15, 2012

All of the power and positive energy and golden light that was directed toward Dillon and the spirits and the eternal bodies and God and every other energy and spiritual source has come and settled on our boy....

Dillon had a remarkable day of NO vomiting, very little nausea, quite a bit of sleep, some relaxation and fun with me, Nana, and the nurses......

This is a complete turnaround from 24 hours ago.....the vomiting has ceased and they have stopped the constant drip of meds to help with that....which often times changes Dillon's mood and mental status...so he is now out of the fog and back to himself; strong, courageous, and present.

Energy is still very very low, he is weak and shaky without having eaten for 5 days...BUT....he was in a recovery period all day.

What will tomorrow bring.......time shall tell. We know with all of the love you are sending we will be stronger and have more mental clarity to manage the difficulties that I know still lie ahead.

thank you thank you thank you thank you thank you thank you thank you

You guys are the BEST most AMAZING group of supportive love!!!!!

Day 3 Radiation--------Day 1 chemo

Friday, September 14, 2012

Day 3 of radiation was basically a repeat of the first 2 days.  The chaos in getting Dillon up and ready and over to the facility, and his feeling soooooo incredibly terribly horribly nauseous with copious vomiting all day long.  The radiation oncologist told me that Dillon is definitely on the extreme end of the spectrum with his nausea and vomiting.  Just great....again my boy is outside the norm and is suffering terribly....I just HATE that.  It is an utterly helpless feeling....not being able to do a single thing to help him feel better.  He was not even able to enjoy the fact that he could remove all of the stickers from his body that were placed for the radiation markings.  He had so looked forward to that moment for almost a week.  Those stickers bothered him all day long every day for almost a week and he was only able to give a nod and a very small smile when I asked him if he wanted me to take them off.  I had to fight hard to not let the tears roll down my cheeks and hit his skin while I peeled a total of 70 stickers off of my boy's torso. 


Yesterday evening we got moved to our new permanent home on the BMT unit.  We are in a corner room with extra windows that wrap around the end of the building. We have amazing views of the city and the mountains.  Dillon was relieved to finally be at our destination and had an evening and night of no vomiting....maybe some of those nervous and uneasy feelings that plagued him all week were lifted and he was finally able to rest.  We both slept fairly well our first night here in our new room.



Today is Friday, September 14....the day we were supposed to be admitted to the hospital.  A thought just struck me....it feels kinda like when I was preparing for Dillon's birth.  I had all of these plans based on this arbitrary "due date" that  I was given.  When to stop work, when to order the crib, when to paint the room, when to install the car seat, when Sean should be available, on and on......and when things did not go as planned I felt completely thrown and confused and just sort of not able to adjust at first because I had my head set on the dates and timing that were previously given.  So, it kinda feels like that...I am sitting here thinking....we were not supposed to even be in the hospital until today and look at all that has happened here already....it leaves me shaking my head in wonderment.

Dillon woke up this morning and did not vomit....finally.  However, the anxiety and worry about today's procedure (a lumbar puncture in a new place, with new people, in a room he had never seen, at an unforeseen time) just threw Dillon into a state of angst. Of course he "performed" beautifully.......followed by dizziness, which caused nausea, which caused vomiting because of the anesthetic used during the procedure.

A couple of hours after recovering from the LP, the first round of chemo began.  He will get 3 days of one kind of chemo and 3 days of another.  Today was day 1 of ATG (so tomorrow is day 2 and Sunday is day 3); tomorrow is also day 1 of the second kind of chemo (Sunday is day 2 and Monday is day 3).  Tuesday is a "day of rest".....and wednesday.....my boy gets his transplant.

Yes of course, he is sick again this evening from the chemo in his spinal column and the ATG that has been dripping in all day. This poor child feels like he will never feel better, will never stop vomiting, will never eat and drink, will never enjoy life again.  He is sad and frustrated and angry and worried and scared and lonesome and tired......my heart is breaking.  This is the hardest part they say....this is the scary terrible stuff that I have heard about and read about....this is cancer and this is a bone marrow transplant.  As my sweet friend Grietje reminds me....

We are walking through this....we are doing it.....we are getting through....this IS the cure!!!!  But my Mama brain is screaming.....HOW MUCH CAN ONE CHILD TAKE????

Day 2 of Radiation

Wednesday, September 12, 2012

We had a long night with not much sleep.  We had to be at radiation at 7 a.m. and it is in a different building, across the street from the hospital.  We elected to drive ourselves instead of getting transported by an ambulance. Little did we know that Dillon would be so weak and tired that he could hardly stand....and it was raining.  Thanks goodness Nana is here.  One of us ran to get the car, the other stayed with Dillon in his wheelchair waiting just inside the hospital ....we then swept him up and off we went.

Radiation was very difficult today.  They had to stop twice for Dillon to vomit, which means repositioning him each time, which is a tedious and time consuming process.  After 2 hours we were ready to go back to the hospital.

We arrived to a sparkling clean room.  The nurse had the housekeepers come in and do a deep clean on the room.

The rest of the day was spent in bed very nauseous with occasional vomiting.....and then a repeat of the above scenario with the rain and wheelchair in the afternoon.  Of course the poor boy was about frozen because we only had 2 pairs of shorts with us at the hospital and did not expect the dip in temperature.

By about 5 p.m. Dillon was pulling out of his nauseous daze.  He began drinking, ate a few crackers, and was quite talkative with the nursing staff.  The doctors said that with severe nausea and vomiting sometimes it can take 24 hours of supportive care with fluids and anti-emetics (meds that help with nausea and vomiting) to get it under control.....so it seems like that is the schedule that D is following.

Dillon requested Nana sleep over at the hospital with him tonight....so off I went at about 6 p.m. back to the apartment to do laundry, pack, and get ready for the BMT admission on friday.  Everything has to be cleaned and wiped with disinfectant wipes and then stored in plastic bins to carry onto the unit.  They don't allow things being brought in like old dirty backpacks, purses, suitcases, toys, etc.    

Dillon is quite disappointed that he "lost 3 days of his life" by getting admitted to the hospital early.  He is angry and sad and frustrated.  Through a stream of tears last night, our courageous boy asked me if it was something he did wrong that made him have to go to the hospital early...."did I not drink enough.....did I eat something wrong???"  He was full of blame for himself. We had a long heartfelt talk about how this is just part of his road to getting better and there was nothing he could have done to either cause it or prevent it.

Until tomorrow....

Day 1 radiation

Tuesday, September 11, 2012

The second part of Luca's birthday post is going to have to come at another time.

Today Dillon received radiation at 7:30 a.m.  By 10 a.m. he was nauseated and throwing up.  At 2 p.m. he got another radiation treatment  and continued to vomit.  At that point, they started IV fluids in the clinic and admitted him to the hospital for hydration with electrolytes, as well as a full menu of meds to help control the nausea.  .  Now, at 10 p.m., I sitting in a filthy hospital room on the 8th floor, which is where they treat kids with respiratory illnesses.....SERIOUSLY...my child who has a compromised immune system and is heading into transplant is stuck in this part of the hospital....I am NOT happy.  I don't even want to take my shoes off to lie down and rest...that is how dirty the floor is, and I had to wipe off the tray table before I could set Dillon's water there because it was visibly dirty and sticky with a bright red substance. After all the talk about wiping and cleaning and sterilizing to prepare for BMT and we are here in this dirty room because they didn't have a BMT room open for us yet. I am angry and frustrated and worried about what Dillon could catch being in this room.

Because of the severity of Dillon's early-onset illness, Nana is on her way and will be here before the 2 p.m. radiation.   D and I need some TLC and  logistical support with the radiation transport.

It is going to be a verrrrrrry long night.

Birthday Bash part 1...and random stuff

Sunday, September 9, 2012.

Luca is 8 today!!!

My parents gifted Luca with a much coveted Remote Control Boat.  Dillon has had one for a couple of  years and Luca has pined after it for all that time.  So now that he is the BIG 8 he has one of his own.

Luca getting ready for the maiden voyage.

A little duck that kept visiting us while we were driving boats.

Brent's place loves to honor all birthday's so they sent Luca this pile of gifts, a beautiful professionally decorated cake, and a couple of balloons.  This was all left in the apartment on our table and when we got home friday evening after dinner, boy was he surprised!!

Luca's Brent's Place birthday surprise

Dillon and I enjoy sports cars....so when we saw this custom Porche we just had to share it with you....

Speaking of dinner on friday evening.....we went to a Mexican restaurant that I had gone to a few times as a child.  It is called Casa Bonita and they have high divers inside the restaurant.  They put on little skits and dive off of these rocks and into a sparkling pool down below all throughout your meal.  Not the best Mexican food....but certainly fun and full of memories. 

The boys are on the bridge behind the waterfall...can you see them?

The boys are asked COUNTLESS times everywhere we go if they are twins!!!  It is now a huge joke

The diving pool.

One last topic.....Dillon wanted everyone to see the markings on his body that is his prep for radiation...which begins Tuesday.  See his lungs all marked out?  They actually make these lead lung-shaped blocks that protect his lungs from receiving too much radiation.  You cannot see them very well but covering all of that marker are these little circle stickers that are supposed to protect the marker from coming of on clothing or in the shower....he has about 70 stickers on his body....they itch, they cause a rash under each spot, and he really really hates them.  He will have them on for a week and will be able to remove them on Thursday afternoon....he is anxious for that because he is very uncomfortable with the itchiness and irritation. 

The front.....

The back.....

Exciting night....

Thursday, September 6, 2012

Dillon and I met with the docs today to confirm results and schedules.  Everything is as I outlined before...nothing new to report.

Big D and I are excited for tomorrow to come....it will be the first time Sean and Luca fly in and we get to go pick them up.  We have lots of fun stuff planned for Lucas's birthday weekend....but I cannot tell you yet because much of it is a surprise for both Sean and Luca.

Many photos will be posted in the days to come.....our last weekend together before transplant.....we are gonna live it up!!!!

CT, pulmonary, and art

Tuesday, September 4, 2012

This morning Dillon had a CT of his sinuses, chest, abdomen, and pelvis.  They were once again confirming the chest mass and the lymph nodes, but also any lingering or hiding infections in any of those areas.  We will get the results on Thursday.  Obviously, if there is any infection found it will have to be treated before the pre-transplant chemo can begin.

Here are some photos of the mural on the walls in the CT room.  The entire room is a zoo, including the ceiling.

We have dear friends here from Santa Fe (neighbors of ours actually) who are up here getting their daughter evaluated for a health condition....so we hooked up for dinner last night and lunch today.  It was lovely to have friends around and to provide some support to someone else for a change.

Dillon and Fae

The second part of today was in pulmonary.  They checked his lung function and a bunch of other stuff related to breathing.  The reason for this is similar to the past evaluations....one is that they want to make sure his lungs are healthy, no infections, no asthma or trouble breathing etc....and also as a baseline to compare during and after transplant because the lungs are one of the areas that can have side effects both short term and long term. The pulmonologist found a little ear infection in Dillon's left ear upon physical exam.....so that re-routed our day back up to the oncology clinic to get the ear looked at by them.  Indeed, a mild infection was confirmed, and he was placed on 2 antibiotics (one oral and one internal in the form of drops).  Big D has been complaining about slight ear pain for a few days so I am glad we caught this.

Check out this cool piece of art we came across in the pulmonary clinic today......as well as one of the elevator floors.  I just love these cute sparkly elevator floors.

Anyone Hungry??

There are different colored floors in every elevator....FUN!!

Dillon is doing great.  Appetite and energy are average;;;  personality and 11-year-old boy orneriness and sassiness fully intact (hahaha).  He is enjoying many foods that will be off limits once he goes inpatient....mostly Caesar salad and lots of raw fruit (especially berries and grapes).

Tomorrow is the last day of the extensive appointments/testing.  There is Neurology and Neuropsychology, as well as nutrition/dietary tomorrow.

On Thursday we meet with Dillon's main oncologist, Dr. Craddock, and go over all the test results and solidify the plans, scheduling, etc. for admission and transplant. 

Sean and Luca will be flying in Friday morning (September 7) and staying through Monday afternoon.  Sunday, September 9, is Luca's 8th birthday.  This is the last weekend that Dillon will be out of the hospital for the next many many weeks....so we are going to live it up.....not a birthday any of us will soon forget!!!

Oh, by the way.....the apartment cleaning regimen is going pretty well.  Mr. Pickle is a great help and I am getting into the groove a bit.

Luca's departure...

Sunday, September 2, 2012

A bit melancholy this afternoon without little brother.  It was a quick goodbye this morning but the impact feels huge.

I think Dillon's feelings of missing are more directed at Nana and Grampy....because he is going to see Luca again in 5 days but we don't know when we will get the grandparents back....so that was a sad feeling for Big D.  I think the finality of it....the thought of...."Mom and I are all alone in Denver" has begun to sink in.  Dillon says he does not feel too hot today (low energy and no appetite) and my mama bear instincts tells me that these events are responsible...not the chemo or anything medically related.

Here are a couple of cool and fun pictures.

Huge Lego display in the hospital....it is the hospital, with cars in the parking lot and everything

Movie night was cozy on the Love-seat size couch in the apartment.

I got a call from Dillon's oncologist today....on Sunday. He re-confirmed the change in plans with the removal of the chest radiation from the schedule.  With that being said....he decided to bump everything up a week.  So instead of going into the hospital on Friday September 21 we will be going in on Friday September 14.  That is good news as far as I am concerned....lets get this show on the road.