Day 104 -- (Day -4) to transplant day

Sunday. 

Today was Preston's first neupogen shot.  Our big week begins!

catching up

I intend to add posts from Riley's time at home, but i like to keep things chronological... (I'm weird like that:)   So look back periodically ...  I will do my best to catch up.

Day 103 -- (Day -5) to transplant day

Saturday.  Riley woke up this morning feeling pretty nauseous again.  I think this tough round has started to take its toll.  Today he started Cyclophosphamide.  This tough chemo could cause bladder damage, so he is also on a medication called "mesna", to prevent bladder complications.  The Cyclophosphamide runs once a day for 2 hours, and he gets the mesna 4 times a day.  This will continue for 4 days. 
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Oh yes, this has been a hard day.  Riley has continued to be sick most of today.  The chemo has accumulated and is now reeking havoc!  Riley is handling it so well though.  I'm so impressed with him!! 

This is Preston's schedule for the coming week.  His shots start tomorrow.  This is it...  Here we go...

Labs today:
White blood cells: 2.2  (normal 4.5 - 13.5)
Red Blood cells: 10.8  (normal 13.5 - 17.5)
Platelets: 110  (normal 150 - 425)
ANC:  1210  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 102 -- (Day -6) to transplant day

Friday.  Today has been a good day. 
Today was the last day of the conditioning chemo, Busulfan. Yeah!  He has made it through incredibly well!!  Dr. Katsanis came by this evening and was so impressed with how great Riley looked!  (He really does look great!!)   His central line is healing.  He just finished with the daily dressings.  Now every three days.  Things are moving along...

I went to the Apothecary Shop to pick up the G-CSF  (Granulocyte - Colony Stimulating Factor) shots for Preston.  The neupogen shots will help him produce extra stem cells to prepare for the transplant.  He will receive shots for 5 days starting on Sunday.  The worker at the Apothecary Shop raised her eyebrows as she looked at my order and asked if I had insurance.  I explained that the shots should all be under the transplant bundle for our insurance, it was already approved.  She looked relieved for me, so of course I had to ask... how much for the 5 shots??  $4000 was her response!!!  WOW!  I am thankful everyday for very good insurance!!  I cannot even imagine the dollar amount attached to our experience.  I am incredibly grateful that with all the worry that we do have, our insurance coverage is not one of those worries!  I know we are blessed.

While I was out, I stopped and picked up a Red box.  I rented a very silly Adam Sandler movie, Jack and Jill.  It was pretty dumb, but mission accomplished... we laughed!  Quite a bit!! 
Toward the end of the night, Riley began to feel nauseous and got pretty sick.  He is such a tough guy.  Really, so brave!  Still taking this -- One Day At A Time!!

Labs today:
White blood cells:  3.1  (normal 4.5 - 13.5)
Red Blood cells:  11.4  (normal 13.5 - 17.5)
Platelets: 114  (normal 150 - 425)
ANC:  1488  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 101 -- (Day -7) to transplant day

Thursday.   I am amazed and completely impressed with how well Riley has handled the conditioning chemo so far!!  I expected it to knock him out, but he is still up.  He is on facebook, texting... we even finished season 3 of "24" today!  He is laughing and smiling .  He is however losing his appetite... We know this happens with chemo... we know it will get worse with the mouth sores and pain that will start next week...  But for today, he is hanging in very well!!  Go Riley!!

Labs today:
White blood cells: 3.7 (normal 4.5 - 13.5)
Red Blood cells: 11.3 (normal 13.5 - 17.5)
Platelets: 130   (normal 150 - 425)
ANC:  1390  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 100 -- (Day -8) to transplant day

Wednesday.  This is Jay.  He is a volunteer with a wonderful organization called  Tu Nidito "your little nest".  He has come to visit Riley almost every single wednesday from the beginning.  Jay is a great example to Riley and a fun guy to be around.  They like to talk about sports and video games and whatever else is going on at the time.  Today Jay told Riley that he got accepted into medical school!  Something he has been working on for a very long time!  They talked a lot about goals today and what Riley's were.  No pressure though :) just things he liked and wanted to do some day.  I am thankful for good people in our lives. 

Labs today:
White blood cells:  2.8  (normal 4.5 - 13.5)
Red Blood cells: 11.5 (normal 13.5 - 17.5)
Platelets: 128   (normal 150 - 425)
ANC:  1098  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 99 -- (Day -9) to transplant day

Tuesday.  The swab came back negative for any viruses.  We are thinking Riley's gunk is from allergies.  It unfortunately is draining in his throat causing coughing and soreness.  At least it wasn't the flu!!  Very thankful for that! 
Riley had a hard night last night.  Right before they started the chemo at 4 am, he woke up in a whole lot of pain from shoulder to shoulder.  The surgeon did say that his line was quite difficult to put in because of scar tissue from his port in the area.  He had to put a wire in to tunnel the way.  Yes, that could get ya up in the night with some pain!!  He tried heat packs and some more mild pain relievers and then just went for the morphine that the nurse was offering.  I don't think he believed that the morphine would work, since it did not with his gut pain from his infection.  It sure did do the trick though and Riley was finally sleeping again.  In the morning, Dr. Kopp greeted him with "Happy 8 day!!"  (search Brian Regan... very funny!)  Riley introduced many doctors and nurses to the classic --ER - pain scale-- bit.  They had to say it!!  I was relieved that he handled the morphine so well, knowing that he will be on that quite a bit through the transplant.  Looks like we are full steam ahead.

Melissa was Riley's nurse again today.  Yesterday they had many conversations about how wonderful  peeps are and today she brought him a box in every color!!  YUM!  She is wonderful! 

Labs today:
White blood cells: 2.8  (normal 4.5 - 13.5)
Red Blood cells: 10.8  (normal 13.5 - 17.5)
Platelets: 135  (normal 150 - 425)
ANC:  1232  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)