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!!!!!!