Day 107 -- (Day -1) to transplant day

Wednesday.  Vince and Preston came into the clinic at 7 this morning for his neupogen shot and then off we went to surgery.  Today was the big day for Preston to get a central line placed.  All of those shots have increased the number of stem cells that he is producing and tomorrow they will draw the blood from the first line, it will go through a special machine that will separate his stem cells from his other blood and he will then get the rest of his blood back through the 2nd line. 
Preston did incredibly well today!!  He didn't even seem nervous ... and for Preston, that is really saying something.  To me he seemed calm and brave!  He is doing an amazing thing for his brother!  We are incredibly proud of his willing spirit and calm demeanor. 

Pre-op.  Lauren, a child life specialist, kept us enertained as the doctors and nurses busily moved about. 

After awhile in post op, Preston was discharged and we all went up to see Riley.  Preston is determined and ready for tomorrow!!

My very brave boys!

Day 106 -- (Day -2) to transplant day

Tuesday.  We got to our walk a little late today (10 pm).  This is the new walking outfit.  A nice yellow paper robe, to go with the yellow mask. :)  It will keep "germs" from the hallway from going back into Riley's room.    Riley's IV pole is also growing.  A few new additions for the growing medicine list he is getting because of the transplant.  Big week ahead!

Labs today:





Day 105 -- (Day -3) to transplant day

Monday.  So, the last few days, Riley has been very nauseous and sick.  Nothing is staying down despite the anti nausea medication that he is on.  We have tried several meds and different combos of meds.  The medicine that really helped him during his last few cycles of chemo are not working with this new cycle. ...?   Oh it is painful to watch your child suffer.  I can only imagine the torture that he is feeling.  Yesterday his jaw was in so much pain from throwing up that he needed a shot of morphine. 
I try to remember the worst nausea that I have ever felt and then times it by 100, because it isn't just some 12 hour bug... this is chemo.  It is constant, (feels like never ending) nausea.  To add to the torture, Riley still needs to take some oral medications ... and keep them down.  Along with his 3 mouthwashes 4x per day. 
So last night we were walking in the hall, doing our laps.  We overheard the nurses talking to each other about some take out they were about to order.  Riley (who hasn't said one word on our walk because he just didn't feel well), looks at me and says,
R-  "What are they ordering??" 
Me- "Delivery from Jason's Deli."
R-  "Umm, I need a BLT."
Me-  "Well, OK!"

The nurse asked if I wanted anything and I declined because I figured I would be eating that sandwich.  There is no way he will get that down.  Maybe he will take a few bites, I thought. ...
Well, my boy ate the whole thing... and kept it down!  Hooray!
It really was a turning point for him! 

So this morning Riley wakes up asking for popcorn.  I thought it was a weird request for 8 AM.  I was on my way down to the clinic to meet Preston for his shot and saw Melissa.  I told her of Riley's request for popcorn and she assured me she would find some.  Without knowing what had happened last night, she said, "Weird thing... kids going through conditioning chemo for bmt's always have a craving for popcorn... that is why I am not surprised by his request!  ---Oh, and bacon too."
I was floored when I heard this and we had a good laugh as I told her about his BLT last night. 

fyi:  Melissa found this bag of popcorn from the picu staff.  Riley had the whole bag finished by the time I returned from the clinic.  He kept it down and then later resumed his upset tummy.  Amazing.

Labs today:

White blood cells: 2.1  (normal 4.5 - 13.5)

Red Blood cells: 11  (normal 13.5 - 17.5)

Platelets: 129   (normal 150 - 425)

ANC:  1428  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)



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. 
-----------------------------------

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)