Day 41.....Halloween at Brent's

 Tuesday, October 30, 2012

It was 2:30 a.m.  I had just laid down next to my husband and put my hand on his chest.  Feeling his skin and his heartbeat was very calming.  It was the 4th time up with Dillon tonight to administer meds . Yesterday was a terribly nauseous day and the pills either kept coming up and had to be re-administered or just got pushed later and later so we ended up having to do 4 doses overnight; at 11:30, 12:30, 1:30, and then 2:30.  As I lay there I realized suddenly that my entire body was on high alert, almost levitating above the mattress; every muscle was tense and ready to bound out of the bed at the first sound of distress from across the hall where my boy attempted to go back to sleep after being woken up for the 4th time.  HUMMM...maybe that is why I am so incredibly worn out.  Note to self....RELAX!!!!

Here are a few pictures of our Sunday Brent's Place Halloween party.  Dillon used just about all of his energy getting ready, so he and I only stayed for a few minutes....followed by an emotional melt down from being completely overwhelmed by the people, the attention, the disappointment....and then a 3 hour nap.  Sean and Luca stayed a while longer playing games and eating party food.

Buckley Brothers Halloween 2012

Luca with a bloody nose and black eye from his rough hockey game

Scary Dillon, Sean, and Shari

Shari is a cat (Luca did the painting) and Sean is a rooster

Dillon is currently taking between 23 and 30 pills every day.  He also has 2 IV meds that I administer and his overnight IV nutrition and a steroid cream twice a day, and 45 minute mouth care sessions twice a day.....it is a full time job....and then there is all the cleaning. Eating is still a huge issue.  We are playing with lowering his IV nutrition and adding an appetite stimulator to try to jump-start his food intake.  Yesterday, for example, he ate 2 bites of chocolate chip cookie and 2 strawberries in a 24-hour period.  He is drinking well....at the moment his favorite things are Limeade and Hot spiced cider.  Monday was the first time Sean and Luca went to the clinic with us.  GOOD NEWS>>>>Dillon did not need platelets or red blood cells on Monday. His counts pretty high and all of his other lab were stable......which means we don't have to return to clinic until Wednesday morning. 

This mural is in the Walgreens in the hospital...AHHH camping

Boys in the exam room.

 Luca's newest hobby that he learned during his last visit but I forgot to post......knitting hats on this little circle loom.  There is a volunteer that comes to Brent's every Saturday morning for lessons and with supplies.  Here is Luca's first hat.  He started on Saturday morning at about 10 and by Sunday at noon it was done.  He has decided he is going to make bunches of them an sell them at a crafts fair.  He is currently saving up money to become an airplane pilot when he is a teenager :)))  Oh the sweetness of dreaming "what to be when you grow up."  I love that part of childhood.

The next event at Brent's was last night.   A group of volunteers prepared a community dinner (which happens every monday) but the special surprise was a magician that both showed and taught tricks all evening.  Dillon slept through the whole thing, as he was exhausted after the trip to the clinic   Luca and I took a plate of food up to Sean and then went down to enjoy the fun.

Luca and some other Brent's kids learning magic.

NOW>>>>finally it is tuesday and Luca and I went on a walk to a park down the street.  It was wonderful to be out in the fresh air and sunshine.  Sean stayed behind with a sleeping Dillon and did the daily cleaning.

Fun slide.

Sweet little community garden in the corner of the park.

Really fun and innovative park.

Tomorrow brings a clinic visit at 10:30....and most likely platelets or red blood cells or both (which takes 4 or 5 hours for both).  We were told that the kids can trick-or-treat in the hospital...HUMMM that should be interesting.  Then back home to rest up for a ghoulish evening.  There is trick-or-treating within the apartment complex (there are 16 rooms and about 6 offices which I think will be plenty for everyone).  Another volunteer group delivers dinner at 6 p.m. so we don't have to worry about cooking.

Having Sean and Luca here is such a blessing, a treat, a sweet lovely time.....and at the very same moment an added stress and complexity that is sometimes extremely taxing on both Dillon and I.  We all expected some version of that...it just feels a little sad that we cannot fully enjoy each other and our time together....but I know that will come.  We keep plugging away, day in and day out, and time passes by, and things improve, slowly but steadily. 

Saturday.....

Saturday, October 27, 2012

I have not had the time or the energy or the words to post the past couple of days.  Sorry.

Everything is fine....or as fine as things can be given the situation.  Dillon continues with his symptoms, which are difficult to control at home with only oral meds and all the other stuff he has to contend with.

He is holding steady, however, so don't worry too much.

My mom just left today at about noon and Sean and Luca are on their way from the airport right now at 6:30 p.m.  They will be here until Thursday morning and the boys are looking forward to have lots of Halloween activities and fun together here at the apartment.

More on another day...I promise.

Day 36......FREE!!!!!!

Thursday, October 25, 2012

As you can imagine it is extremely hectic this morning.  We got discharged at 3:30 p.m. yesterday.  My mom and I had the lovely dinner that the Brent's volunteers brought up to us.....all the while sitting with the home care nurse for about 2 hours learning how to administer and care for all the IV stuff that we have to do.  We got the home care delivery last night at about 6:30 and it was 4 huge boxes...it took 2 wagons to bring it all up to our room.  It fills 2 cabinets and half of the fridge (the nutrition and fluids have to be cold).  Talk about overwhelming.

We are off and running this morning trying to carve out a new routine with the pills, the IV stuff, the other care, Dillon's sick belly, etc, etc.  I cannot even really put words to how complex and overwhelming the whole thing is.

For the next 2 weeks or so we have to go to the clinic for several hours each day for an IV med that we cannot do at home, as well as lab work and possible transfusions of blood products.  WOW....busy busy busy...but still better than being in the hospital.  Last night Dillon wanted to know....since we have so much stuff to do at home why did they not just leave him in the hospital.  We discussed it and decided that even though it is a crazy routine we have to figure out...being on the couch, with our stuff, our bathroom, no nurses coming in and out at all hours....it is still WAY WAY WAY better than being in the hospital.

His symptoms are about the same as the past few days but I can see that he will progress more quickly at home.  His first craving (which has been going on for a couple of weeks) was for green grapes...which I promptly ran out to get at 8:30 last night in a blowing snow storm.  This morning, through his nausea, he is sitting up in bed gazing out the window and he keeps saying...."It is soooooo pretty.  I cannot stop looking at it."  AND he asked to take his pills with something other than water.....and I just so happen to have his favorite drink (limeade).  One sip and he declared...."This is the BEST limeade I have EVER had!!!!"  Gonna be feeling better before we know it.

Here are a few pics from yesterday's discharge.  He was so very tired it was hard for him to show his excitement but I captured a couple of smiles that he let slip (hahaha).

Dillon and his favorite nurse....WE LOVE YOU MARISA!!

Dillon resting at Brent's after the long trip up from the car

Mama and Dillon just got OUT

Getting ready to get the heck out of hospital

And.....the view that Dillon cannot stop looking at this morning.....MAGICAL!!!

Winter blast started shortly after we got home yesterday.  It is SO beautiful!!

Day 34....Drano

Tuesday, October 23, 2012

Tired tired tired.

We have been in the hospital 42 days.  I am exhausted emotionally and physically, even with all the backup Sean and my parents have provided.

My Mom is here to help with the transition back to the apartment..

Dillon continues on the slow healing road.  He still sleeps a lot, is extremely weak, sore, and stiff.  Still quite nauseous and still not eating.  The abscess continues to heal but causes excruciating pain at times.

We had a little bump today.  One of the sides of Dillon's central line stopped working today.  They said it either had a clot or a kink internally.  The first step was to try putting a medication in the line to dissolve the clot.....think of Drano for the veins...haha.  If that did not work, the the next step was to be a repair of the line which apparently is a minor procedure and very common.  Luckily the "Drano" worked and all was fine.  Thank goodness...I was so worried that it was going to delay discharge.

We got all of the meds and tomorrow we get a training on how to administer the overnight nutrition at home.  Lots of steps, lots of details..... we are really looking forward to being in our own space.

ANC 1640

That is higher than yesterday so it shows that Dillon's body is working hard at trying to recover the bone marrow function on its own......GO CELLS GO!!!!

Day 33......yahoooooo

Monday, October 22, 2012

First the ANC....today it is 1515.....remember I talked about the reason for it dropping....this is still exceptional!!

Second.....we are getting out of here and headed back to the apartment on Wednesday afternoon!!!!  I have picked up the meds (there are 11 oral, 1 cream, 2 IV, and the TPN), we are getting all of the home care supplies in order, etc.  Nana is on her way this evening to assist with the transition.  Sean so very wished he could be here but he is missing work all next week so he just had to get some hours in this week.  As usual...Dillon's support system is in place, strong and ready to go.

Now for the BIG ANNOUNCEMENT for today.......

We got the bone marrow biopsy results.......drum roll please.........

Dillon's bone marrow shows 100% donor cells!!!!!!!!  Strong and healthy with NO lymphoma present.

His original cells have effectively been OBLITERATED!!!!  Sometimes this is not the case and the patient and family are left waiting anxiously over the next several months to see if the donor cells will win out over the old ones that are trying to come back.....Soooooo we don't have that nail biting worry!

THIS IS A GOOD NEWS DAY!!! I am flying high.  I held my breath when the doc came in with the lab report from the bone marrow and when she said 100% donor, the floor fell out from under me...I was lightheaded and giddy.....just unbelievable relief and happiness swept over my entire being.

HALLELUJAH ....WE ARE ON THE ROAD TO RECOVERY!!!!!!

Day 30.....the first laugh...

Saturday, October 20, 2012

Sean and Luca are here and for the first time in I don't know how long....Dillon laughed.  Between Sean and Luca they had him cracking up repeatedly.  It was FANTASTIC!!!!!!

He continues on the course of slow healing.  He is now on only 3 IV meds and the rest have been switched to oral.  They reduced his IV nutrition to help encourage his appetite. He gets enough calories to maintain his weight so basically  he would never get hungry while on full TPN, so yesterday I asked suggested a decrease, and the team agreed that it was worth a try.

He has been afebrile (without fever) for over 48 hours now, which is one of the requirements for discharge...so YIPPY!!!!

With discharge on the horizon, my brain is tabulating a list of all the stuff I need to do to "get ready."  Clean the car, clean the apartment, get his meds, get his supplies for IV nutrition at home as well as dressing changes and such, get some groceries, pack the hospital room, get all that stuff out of there and back to the apartment....and then the final transport of my boy who is still very very weak and will need lots of assistance just to get into the car.  I have requested one of my parents come to assist with all of that...it will lessen my stress, which will lessen Dillon's stress.  I am not sure how he feels about leaving the hospital...not a conversation we have had yet.  One of our neighbors at the apartment went home after being here for almost a year and when I asked her how she was feeling about that she said she was nervous to be away from the safety net of the doctors and hospital....I wonder if Dillon will feel that way about leaving the hospital.

Dillon had physical therapy a couple of days ago and they were shocked at HOW STRONG he is. He was laughing at them because he does not feel strong compared to his regular self, but they assured him that he is way ahead of the curve compared to many kids that are at the same point in the transplant process.  That seemed to motivate him and he worked really hard at his exercises with her.....of course the next day when it was me trying to get him to do the exercises he was not quite so cooperative (go figure!!!)  I guess he is still an adolescent boy balking at his mother's requests....thank goodness...so happy for those 'normal' moments.  

Oh yeah...a couple of days ago he also Skyped with his buddy Finn.  That is the first time he has had the desire and energy to do that since we came to Denver....another normal moment that made my heart sing.  THANK YOU FINN...it was so nice to hear about your adventures and some normal stuff outside of this hospital!!!

Have a great weekend everyone!!!!

ANC 3050 Remember it is normal for it to trend down after a big surge and the discontinuation of the GCSF, which was helping his body manufacture white cells. 

Days 28 and 29......changes

Thursday, October 18, 2012

Day 28 was eventful in that Dillon received his bone marrow biopsy and aspirate.  Everyone  in transplant gets this done on day 28.  There are 2 things they are looking for:  One is, is there any cancer in the bone marrow (there better not be!!!) and two is, what is the percentage of donor cells versus the percentage of his old cells in the bone marrow.  The "goal" or hope is that it is above 90% donor cells...sometimes it is even 100% donor cells.  Sometimes, however, it can be 50/50 donor and old. If that is the case, he will get another bone marrow biopsy done in a month and they just watch and make sure the percentage of donor cells is going up.  I did not even ask what happens if the donor cell count does not go up...in other words, the old cells are taking over....I don't feel a need to know that because in my soul I feel confident that Dillon is going to be on the higher side of donor cells.

Dillon was very nervous and nauseous prior to the 3 p.m. bone marrow biopsy, and then afterwards he was just wiped out and slept most of the afternoon.  Most other symptoms continue to dissipate slowly.

ANC was 3740


Today is day 29.   I have a list of improvements that are happening that I wanted to share.  They add up to Dillon doing quite a bit better....even though if you asked him he would tell you everything is the same.  The doctors and nurses and I see the changes!!! Here are a few that I remember in the last couple of days.

*  This morning..."Mom, can you hand me my water?"  First time he has held his own cup in a month.
*  Yesterday morning...."Mom, I think I can do my own shower today."  First time in a month that he has had the   strength to scrub his own body.
*   Yesterday morning...."Nana, I feel like a popsicle...do we have any?"  First time HE asked for anything to eat in weeks.  The miniscule things he has eaten before have all been "forced" on him by me or some other caregiver :)
* This morning, after scowling at the doctor for suggesting he get up and sit in the chair...."Mom, can you get the
chair ready, I am going to sit there for a while....leave it where it is, I will walk over there."  AND after getting to
the chair he asked me to turn the TV so he could see it to watch cartoons....again, his suggestion, not mine.
* Last night, even though very tired, he agreed to talk with his Dad on the phone.

Now a list of the medical stuff that has changed/improved....some of which are quite significant.....
>The HHV-6 virus test from Monday morning is now NEGATIVE.  The meds and Dillon's system have cleared the virus completely.  He will remain on the medication once a day for another week or so and then twice a week for a week or so just to be sure it does not come back.  This is an IV med but we can get it in the clinic as an outpatient if we get discharged before he completes the entire course.
>The Torovirus that was in his stool for the past month has cleared....negative test on Monday.
>His ANC is such that they have stopped a very strong medication that is used to help his body raise the counts....the expectation is that the counts will drop a bit over the next few days as his body takes over the production unaided by this medication.
> The abscess on his backside has improved a ton the last couple of days with the white cells really beginning to function in his system.
>His diarrhea is resolving.  He was not up at all overnight, whereas a few days ago he was up 4 or 5 times to use the bathroom.
>Today they change over the last medication from IV to oral that he will need to have at home....so all of his discharge meds are oral for going home and he is able to take them and keep them down already.

OKAY...that is all I can think of right now.

Day 29 ANC 3126 ( slight drop because of stopping the medication that helps his body manufacture white cells)

Now for a little excitement......the doctors said it is in their minds and their scheduling plans to get Dillon discharge by Thursday of next week (barring any unforeseen bumps in the road, of course). 

It has been a long time since I posted a photo....check out the art work on Big D's head.....

Continuation....

Tuesday, October 16, 2012

Thanks Aunt Marilyn for the nudge.....I forgot to tell what the neck and armpit swelling and pain were attributed to....

So....you remember that Dillon has this HHV6 virus running rampant at the moment...well the medication for that is hard on the kidneys , so to help protect the kidneys a patient is given a large amount (400 ml) of IV fluid before the medication and after....well Mr. Pickle's kidneys are still recovering from the assault they had during the ICU episode, so they are not processing all of that extra fluid particularly well.  In addition, Dillon has not been getting up and moving that much (for obvious reasons) sooooooo.....the fluid is building up in his body and pooling in various areas based on how his body is positioned.  Basically, he is almost always laying on his right side so his face, eye, neck, shoulder, and armpit are accumulating "pools" of fluid and that is what the CT scan showed.

Of course there is yet ANOTHER medication to counteract this pooling, but it takes time for the body to respond to these buildup areas.  His new assignment is to sit upright in a chair twice a day for 15-20 minutes...and try to walk around a bit, even if only to the bathroom.  The amazing human body will know what to with that extra fluid once Dillon gives it that physical input of information including movement and gravity.

His cough and the abscess have much improved.  The abscess is in fact beginning to heal in a normal way with a bit of increased swelling and discharge because all those white cells have flocked there to do their first job...heal the infection.

Day 27....yikes and yeah

Tuesday, October 16, 2012

Yesterday was an extremely stressful day and emotionally it took me right back to the gut wrenching terror that accompanied Dillon's original diagnosis.

Yesterday morning Big D woke up with a swollen and tender neck and armpit on the right side....his neck was visibly bigger than the other side.  This incited a panic in my heart....oh my God, swollen lymph nodes are what  got us here in the first place.  The docs came in and did a quick exam and they immediately ordered a CT scan of Dillon's neck and chest.  They were being very vague about what they thought was going on and, after some very pointed questions from myself, they did say that they were nervous too and the CT was being done to rule out a recurrence of the lymphoma. I Lost it....I had to leave the room and have a good strong cry mixed with panic and fear.  How could that even be possible???  That would mean the transplant completely failed and his old system revved up and took over.  OMG...my parents are both here with the same terror running through their hearts and minds.

We had to wait several hours before the CT was complete. which included accessing Dillon's port...which raised up all of the old fear and anxiety for him about the needle insertion.

After a very high-strung day, the CT was completed and it was about 30 minutes later that the doc walked in and said.......the scan is clear!!!!!! Breathe Shari, take a breath.......I was almost faint with relief.  A weight lifted off my heart in that instant and my belief that this process is going as it should and that the cure is well on its way was renewed.

Disaster averted....

ANC today:  3352

Baby steps of improvement again today.  Only 1 episode of vomiting, fever never above 100, less coughing, and less diarrhea.  They are changing another med from IV to oral...the first steps of getting ready to get out of here!!!

GO DILLON GO!!!!!

Day 25 and 26

Monday, October 15, 2012

This morning Dillon's ANC is...........

2607!!!!!!!!!!!!

I am at a loss for words these past few days......I ran into a wall of burnout and exhaustion.

My parents are here and I am getting some much needed rest and breaks from the daily grind at the hospital.

Sorry I don't have anything interesting or clever to say today...just know that Dillon's pile of symptoms are slowly improving...almost imperceptible increments...but I see it, it is clear to my well-trained mama eyes.  A couple more side effects have cropped up with the new med that is treating the HHV-6, but so far they are manageable in the scheme of things.

Big Huge Hugs to everyone that continues to follow and certainly an extra one for those of you that send such heartfelt, kind, supportive notes...they help me more than you will ever know...so thank you!!!!

Day 24....oh my aching head

Saturday, October 13, 2012

I have a splitting migraine headache today....no doubt a triple whammy (weather change, hormones, stress).

Dillon is muddling through another day of nausea, vomiting, diarrhea, and fevers.

Unbelievable ANC today  1426!!!!!!!

Platelets continue to be very low with need for transfusions twice a day.  Red blood cells are being transfused about every third day.

Day 23.....Hooray...and a glitch

Friday, October 12, 2012

First the HOORAY....

ANC 816

The doctors are so happy and cannot believe that he is already over 500.  You know our Dillon cannot do anything "as expected"

Okay...now the glitch.....

The fevers continue and we think we have an explanation.

The fever most likely began as a response to the abscess...which is much better but will take several weeks to heal completely because it got quite large and quite deep. It is not looking infected on the surface and it is much less painful......yet the fever continues.

The fever is now not as high and it does respond to Tylenol, which it did not do before...so it is still present but it is different.

Yesterday there was a lab result that might explain this...

Dillon has HHV6 (human herpes virus 6...there are 8 or 9 different herpes virus including the ones that causes cold sores, mononucleosis, chickenpox).  We all have this virus in our bodies.  Most of us got it as children and it is an illness called roseola, which is a red rash (usually on the face) followed by a high fever that lasts for about a week.  We all recover but herpes viruses sit dormant in the body for a lifetime.  The nonexistent immune system allows this type of virus to rear its head....it begins replicating and causes symptoms similar to the original illness.  Dillon has red cheeks and the fever continues.  He has 50,000 copies of this virus in his system right now.  The good news....it is treatable and will most likely resolve the fever issues.  The bad news it that the treatment medication is hard on the kidneys and the way they help "insulate" the kidneys is by giving 400 cc of fluid before and after the medication is given (right now it is given twice a day starting last night).  Soooooo the medication can tax the kidneys and as Dillon's kidneys are just starting to function normally again, the extra fluid is also taxing on the kidneys.....so once again, very close monitoring.  One of the side effects of this medication...NAUSEA of course.  They say it takes about a week to clear this virus out of the blood stream and then they continue the medication for another week after that. It is yet to be determined if this will delay our discharge further but next weekend is likely NOT happening, even if his ANC remains on the rise.  Time shall tell, as usual.

One other thing is happening, which is peeling skin.  We were told about this.  Some kids actually turn a dark brown color after radiation and then their skin peels, similar to a sunburn type peeling.  Dillon became discolored (not really brown, more of a purplish red) in some areas of his body but not others....but the peeling has begun.  His hands are peeling and yesterday he worked very patiently to get a huge piece of skin off all in one piece...hahahaha...just like an 11-year-old boy to try to gross the nurse out with this huge hunk of skin!!

Onward and upward....

Day 22

Thursday, October 11, 2012

There is not much to say today.....things are about the same.  Dillon was up a lot last night, so this evening I am exhausted.

ANC 476

Day 21

Wednesday, October 10, 2012

Three weeks ago today Big D received his Magic Cells of Life!!!

Still slow improvements.  His strength is beginning to return.  He can now stand up out of bed unassisted.  Next goal....walking to the bathroom.  We are also going to begin implementing oral intake goals.  He is drinking plenty but he needs to chew and swallow SOMETHING everyday beginning today.

ANC: 339

This morning a nurse trainer came up to me while I ate breakfast and said that we needed to get my discharge training classes completed......in my mind...."Wait, DISCHARGE???"  She said, "If he keeps on this trend you might be out of here in a week or so!!"  WHOOOOOHHHH.  Of course it depends on about a hundred factors....but many of those are lining up right now....unbelievable!!!!

Sometimes.....

Tuesday, October 9, 2012

Sometimes as I sit in this darkened hospital room with monitors flashing, machines beeping, oxygen blowing, I listen to the soft breath if my child as he sleeps, with tears streaming down my cheeks. I still cannot believe that this is our reality...
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Sometimes as I sit in this darkened hospital room with monitors flashing, machines beeping, oxygen blowing, I listen to the soft breath if my child as he sleeps, with tears streaming down my cheeks I still cannot believe my baby has cancer and has to endure the unthinkable.....
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Sometimes as I sit in this darkened hospital room with monitors flashing, machines beeping, oxygen blowing, I listen to the soft breath if my child as he sleeps, with tears streaming down my cheeks I still cannot believe that I am hundreds of miles away from my husband and child......
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Sometimes as I sit in this darkened hospital room with monitors flashing, machines beeping, oxygen blowing, I listen to the soft breath if my child as he sleeps, with tears streaming down my cheeks I still cannot believe that there are worse things in life than having cancer and I find myself feeling grateful that my boy has something that is curable or at least treatable and he will not be afflicted for a lifetime.....
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Sometimes as I sit in this darkened hospital room with monitors flashing, machines beeping, oxygen blowing, I listen to the soft breath if my child as he sleeps, with tears streaming down my cheeks I still cannot believe that all of this will be a distant memory some day and my baby will grow into an amazing man.

Day 20....

Tuesday, October 9, 2012

Dillon continues to improve.  Overnight his temp was below 101 all night.  The nausea and diarrhea are in full swing, presumably from the total body irradiation.  This is uncomfortable, almost uncontrollable, and will possibly last for several weeks....UGGHHH!!  Dillon has now not eaten for a month (aside from a few bites of watermelon a couple of times).  He is not wasting away....he has the IV nutrition that includes completely balanced nutrition.  Today I asked when we might expect Dillon to begin eating again and the doctor's response was that a lot of kids go home on TPN (IV nutrition) and they get it for 12 hours every night to maintain their weight and they slowly wean off of it as their intake increases and they begin to be able to maintain their weight and hydration through oral intake.

Speaking of weight.....Dillon is back down to his baseline weight, which means that his fluid overload and retention has been corrected.  It is still a delicate balance but he looks much much better; he is not so puffy anymore and he is just barely yellow.  His bilirubin is still 5 today but they say it takes a while for the body to clear that out. 

Okay, so about the counts that we are holding our breath for.....I found this article about BMT and felt that the explanation of the engraftment was perfect for sharing with all of you...so here it is.

Measuring Engraftment

After you receive a bone marrow or cord blood transplant (also called a BMT), your transplant team will watch for signs of engraftment. Engraftment is when the donated cells you received for your transplant start to grow and make new blood cells.
You will have daily blood samples taken while you are waiting for your donated cells to engraft. The blood samples will be given a complete blood count (CBC) test. A CBC test can give your doctors information about the kinds and numbers of healthy cells in the blood. The types of blood cells that are counted to measure engraftment are neutrophils, which are a type of white blood cell that are important for fighting infections, and platelets, which help control bleeding.

Neutrophil engraftment

A CBC test counts the number of neutrophils in your bloodstream. An absolute neutrophil count (ANC) of 500 or more for 3 days in a row is a sign of engraftment. This means that the blood test shows 500 or more neutrophils in a cubic millimeter of blood. Neutrophil engraftment can occur as early as 10 days after transplant. About 20 days is more common for patients who receive marrow or peripheral (circulating) blood cells. For patients who receive cord blood, the average time to neutrophil engraftment is between 21 and 35 days.

Platelet engraftment

A CBC test will also show the number of platelets in your bloodstream. A platelet count of 20,000 to 50,000 is a mark of platelet engraftment. This means your blood test shows 20,000 - 50,000 platelets per microliter of blood. For patients who receive marrow or peripheral blood cells, platelet engraftment often happens at the same time or a little bit after neutrophil engraftment. For patients who receive cord blood, it may be 8 weeks or longer after transplant before platelet engraftment occurs.

Okay, so as you read the magic number is 500 for 3 days.....two days ago Dillon's ANC was 192, yesterday it was 97, and today it is 277!!!  So this is a bit of a roller coaster and tomorrow it could be lower again, but we are definitely trending in the right direction.  Now my posts will include the ANC...so you can watch and wait with me!!

Okay, now a photo.  You know Dillon has been on over 40 medications on any given day....check out this IV pole and the best part, of course, is the new T-shirt!!

There are 9 pumps on this IV pole!!!!

Day 19

Monday, October 8, 2012

Dillon is still improving.  His color is almost back to normal and the swelling/ fluid retention has improved greatly as well.  He has lost almost 7 pounds of fluid over the past week.  At his peek of yellowness (is that a word??) his bilirubin was 15 and now it is 5 with normal being between 0.2 -1.2.   He still as fevers up to 102 routinely.  The source has not been identified yet but aggressive treatment with 3 different antibiotics, an antiviral, and 2 antifungals are supposed to be helping.  His abscess is beginning to heal, his mouth and throat are almost completely better, the fever is a bit more controlled now as it was at 105 for a few days, and his labs show that his body is recovering from the assault on the liver and kidneys.  They have cultured many bodily fluids....you name it, they have tested it....and nothing is growing out any bacteria.  

Tomorrow I will begin discussing the lab values that the doctors watch that show his new immune system/bone marrow is beginning to function.....we are not quite there yet but it is definitely on the horizon.  

Departure Day :(

Monday, October 8, 2012

Sean and Luca left today at about noon.  It is so hard to say "see you next time".....They will be back in 2 weeks.   Most of the visit was spent switching back and forth between being with Dillon and being at the apartment.  There was not a lot of outside recreation this visit.  Luca of course, being ever so wise, completely understood and had no problem just hanging out in brother's room and at Brent's Place.  We did go on a little shopping trip and scored some really nice used hockey skates.  Luca has grown 2 shoe sizes in the past 6 months...so needless to say his old skates don't fit anymore.

Day 17....slow recovery

Saturday, October 6, 2012

Dillon is slowly restoring his body.  Yesterday midday he agreed to order some watermelon (one of the only fresh foods he is allowed to have) and he ate 4 or 5 bites.  That is the first solid food he has eaten in 3 weeks.  He has been and continues to drink a couple of cups of ice water and yesterday he asked for lemonade.  His skin is a little less yellow and his bilirubin count is falling very slowly, which is the trend we have been waiting for.  Every day before yesterday the bilirubin was rising and finally a slight dip.  Dillon is still extremely discolored, he does not really look like himself between the puffiness and the discoloration.  My mom and Luca were a bit shocked when they first saw him.  His kidney function also improved enough for him to get the contrast for the MRI yesterday...so that is also a big improvement, although he has a ways to go.

His legs and hands are beginning to regain more function.  For a few days his fingers just did not seem to work well.  He had trouble grabbing and holding small things, he could not hold a pill to put it into his mouth, but now he can.  His feet were also not functioning quite right (sort of stiff and floppy at the same time) so walking to the bathroom was impossible for the past few days but yesterday he got up (with the assistance of 2 people) and got to the bathroom and even got his much dreaded shower.  He was exhausted after all that action but he had to admit that he did feel better being clean and moisturized.  His skin is terribly dry.

Stable and steady.....on the mend, slowly but surely.

Day 16.....SNOW!!!

Friday, October 5, 2012

I spent the night at the apartment with Luca and my Mom.....look what we woke up to this morning.

First Snow in Denver

First snow in Denver

Day 14.....out of ICU

Wednesday, October 3, 2012

Dillon is stable.  He is out of ICU and back on the BMT unit.  He still has many complex issues...pretty much the same as yesterday.  He has lost a few liters of fluid but his liver, kidneys and many other things are still struggling to correct themselves.

I am out of words......more another day.

Transferred to the ICU....day +13

Tuesday, October 2, 2012

As you all know, the previous few days have been difficult for Dillon with fevers and such.

Well that all came to a head yesterday with him actually losing consciousness, dangerously low blood pressure, fluid overload throughout his body, decreased urine output, yellowing of skin and eyes, an abscess on his backside that is extremely painful and infected......

He is in the ICU.  He is safe and stable, although still in a precarious place at the moment.  The doctors are working very hard to correct the many and complex issues that have come about in the past 24 hours.  This morning at rounds there were 20 professionals involved...many minds working together to share their expertise and get Dillon back on track.

He is terrified, in extreme pain, having trouble breathing and needing oxygen, the list is long....but please know that he is safe right now....not "out of the woods" but he is stable. 

Right now the issues are extreme fluid retention (he has gained over 8 pounds in the past 1-1/2 days) in the setting of low blood pressure and decreased kidney function.  If they just gave him meds to excrete the fluid it would overload his kidneys and they might shut down, and his blood pressure could drop again to dangerously low levels.  The danger of not getting the fluid excreted is risk of pneumonia with fluid building up in his lungs and his heart is working very very hard to pump blood to his body.  His liver is also not quite functioning properly and that is a huge concern in the face of the bone marrow transplant; his bilirubin is very high so his skin and eyes are quite yellow.  His kidney function is not up to what it should be.  His fever continues, although not as high as a few days ago, and they do believe this is because of the huge, terrible, raw, raging abscess on Dillon's butt.  They are concerned that the infection has moved into Dillon's blood and he has sepsis.....

Sorry I am not being more descriptive or explanatory.  I am exhausted and just out of energy.  As things resolve or treatment changes I will let you know.  Sean is here with me.  I called him yesterday evening when Dillon lost consciousness and asked him to get here as soon as possible (he was here by 11 a.m. this morning, it is a 7-hour drive).  One or both of my parents will deliver Luca up here in the next few days (probably Thursday evening).  Sean and Luca had planned on being here this weekend already, so this is just a little alteration in the original plan.

I am so very grateful to have my husband by my side and the way Dillon's eyes lit up when he realized his daddy was in the room was priceless.