Day + 28

Thursday.  This was my counter top when we came home from the hospital this past week.  I feel like a pharmacy.

Lets take a closer look at the number of  medication information printouts we received from the pharmacy when we went home.

 This is after cleaning out a cabinet in the kitchen to store all of the meds and mouthwashes and masks.  Now we are an official pharmacy.  :)

Riley's morning pills.  12 pills. 

Day + 27

Wednesday.   Today was a big day.  Around 30 days post transplant they do a biopsy and send results out of state for an ENGRAFTMENT STUDY.  This will tell us how well Riley has engrafted with the new cells.  How much of Riley is -Riley- or -Preston-. ?  We'll see.  
Riley has continued to have a slight wheeze and it was a little worse right before the biopsy.  He is a pro and took the breathing treatment like it was nothing.  Riley has endured so much and really not complained.  He is a brave boy!

We were so hungry after leaving the hospital.  We had to be there very early this morning and Riley could not eat anything because of the biopsy.  Riley woke up from the anesthesia wanting "Famous Daves"!  I would never turn down "Famous Daves"!  As we pulled into the parking lot, I was planning on getting food to go, but the parking lot was empty.  We decided to stay and be "regular".  It was past the lunch crowd and before the dinner crowd.  After wiping down the table with clorox wipes, we enjoyed a delicious lunch together!  

Labs today:
White blood cells:  3.6  (normal 4.5 - 13.5)
Red Blood cells: 12.3  (normal 13.5 - 17.5)
Platelets: 75  (normal 150 - 425)
ANC:  2664  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day + 25

Monday.  It was wonderful to go home yesterday, but here we are again.  We spent the morning in the clinic, running tests.  Bryant was so patient.  The Ipad is an amazing tool!  This picture shows the boys waiting while I am in the pharmacy line.  Riley loves... (not)... wearing a mask. Must be done. :)  We are just thrilled to be able to head back home, and stay.

This is a shot of Riley's lines.  The very visible line from his neck down to the central line on the right is his Hickman.  We have to flush it every night and cover it for showering.
The opposite side of his neck also has a little scar where his port line is.  It is not as visible in this picture but when the angle is right you can also see it just as much.  Not shown in this picture is his port.  It sticks out quite a bit, but he's just thrilled to not be accessed all the time any more.  He can shower regularly when not accessed because it is underneath the skin.  I call him "Iron Man". 

Day +24 GOING HOME!

Sunday.  This is the final cart load to go to the car.  Riley has been patiently waiting to be discharged, and for his mom to pack it all up!  ... Last minute instructions and goodbyes.  (We will be back tomorrow... in the clinic).  We then walk down the quiet hall with Brittney (our nurse today) and as we  get close to the front desk, we hear loud noise makers and lots of cheering!!  They have the whole front decorted and a gift for Riley and "THE GONG" is out waiting to be hit!  Whenever a patient finishes their treatment on the 6th floor, they get to hit "the gong".  We have seen others pass this stage.  It is very exciting for everyone! 

So this is me and my teary eyed face.  We have spent so many days and nights in this place, with these wonderful people that I was very emotional leaving today.  Words cannot express how thankful I am to them.  They have treated Riley with such respect, care and knowledge.  They have uplifted him with laughter and been there to ease worry.  They have become like family!  Many of the nurses have made sure to tell Riley that they only want to see him again as a VISITOR.  Not as a patient!That's the plan!! :) 

Labs today:
White blood cells: 2.7  (normal 4.5 - 13.5)
Red Blood cells: 12  (normal 13.5 - 17.5)
Platelets: 51  (normal 150 - 425)
ANC:  1836  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 131 -- (Day+23)

Saturday.  Riley and I learned how to flush out his port and central line today.  We will have to do it everyday at home as part of his care.  Riley is already a pro. 
Riley's white blood cell count and ANC came back quite low today compared to what it has been.  Initially I was very concerned, but the doctors assure that all of the numbers will flucuate for a while.  Also it just might be the read for today.  It changes constantly.  White blood cells only live 3-4 hours.  We are all anxious for tomorrows labs.  It is our going home day and we are pretty set on that...

Labs today:
White blood cells:  2.5  (normal 4.5 - 13.5)
Red Blood cells:  10.1  (normal 13.5 - 17.5)
Platelets: 50  (normal 150 - 425)
ANC:  1650  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 130 -- (Day +22)

Friday.  Amber came by knocking on our door this morning during Riley's mid morning nap... "Riley... you are going to want to get up for this!  Some U of A football players are here!"
Chelsea, our awesome child life specialist pulled some strings!  She's great!  They all chatted for a bit, they talked about positions, they gave Riley a new hat and other fun U of A stuff.  Cool!  Ya, ... that will make his day!

Then Riley did his walk.  He stopped to chat with Irene for awhile.  She's great!  Everyone is so wonderful to Riley!  They have been taking care of him for a long while now.  They are compassionate and care so much for him.  They are like family.  They all say how much they will miss him... but hope he only comes back to "visit"... not to stay! :)

(this is the "really mom... another picture" look :)

Our doctors put in all of our perscriptions to the pharmacy today so we won't have any hold ups on Sunday when we try to leave (since it will be the weekend).  I knew it would be a lot... two grocery bags however, I was not expecting. 



Mom and Dad headed home tonight.  Words cannot express how grateful I am for the support of good parents.  We are lucky to have the incredible support of Vince's mom and dad and siblings as well!  I don't know how people make it through an ordeal like this without the support of extended family.  Vince still had to work, ...most of the time I needed to be with Riley... and then at times we both needed to be here.  How would it be ok for our other children?  First of all, Vince has been amazing!!  He was everywhere.  Working, playing with the kids, shopping, cleaning, at the hospital, at home, tucking in, getting the kids up for school... and the list goes on.  We still needed help.  When family steps in and comforts and keeps life as regular as it can be, kids are blessed!  Good memories were made for my children.  Walks to the park, book reading, scripture reading, U of A baseball games, rides to scouts, birthday parties and activities... Just knowing that a loved one is there is priceless.  For them and for me.  Thank you mom and dad!  What a bleesing you have been to our family.  You have been our hands when we couldn't be.  We love you!

Labs today:
White blood cells:  4.9  (normal 4.5 - 13.5)
Red Blood cells:  11.6  (normal 13.5 - 17.5)
Platelets: 50  (normal 150 - 425)
ANC:  3822  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 129 -- (Day +21)

Thursday.  We are definately feeling the winding down of this hospital stay!!  Rounds this morning, I had to get a picture because Dr. Gupta (yellow shirt), will be in the clinic the rest of the week... I also wanted to remember the number of doctors that saw us every morning during rounds.  They continue to be so impressed with how well he has handled the transplant!  The doctors and nurses are giving a lot of the credit to how well Riley has performed his "jobs".  They say that some teenagers and young adults refuse to get up and walk every day, do their mouthcare, take showers every day...  Riley is determined to beat this thing and get home (and he is just an obediant boy!), that he is willing to do whatever it takes!  They also say that a positive attitude truly plays a role and Riley definately has that covered!  They are amazed to be sending Riley home about a week earlier than the "normal" hospital stay after a bone marrow transplant.  YEAH! 

I went home this afternoon to help clean our house.  Nana came with her awesome house cleaners and of course mom and dad were there to help too.  We dusted, replaced the filters and sanitized that house in preparation for Riley!  Vince will clean the carpets on Saturday. We can't wait to bring that boy home!! 

Labs today:
White blood cells:  4.6  (normal 4.5 - 13.5)
Red Blood cells:  12  (normal 13.5 - 17.5)
Platelets: 50  (normal 150 - 425)
ANC:  3450 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)