Day 128 -- (Day +20)

Wednesday.  This is Amber.  We met her back in December when she was diagnosed with ALL not long after Riley's diagnosis.  Most of her treatments until now have been done in the clinic, so it was great to catch up.   It is wonderful to see another teenager on the floor.  I sat and chatted with the nurses and Riley had a new walking buddy for the night.  Awesome!  It really is so good for him to talk with someone who KNOWS what life is like with leukemia.  It is a whole different world.  These two are so positive, even talking about their treatments, they just have a great outlook on life!

Labs today:
White blood cells:  4.7  (normal 4.5 - 13.5)
Red Blood cells: 12  (normal 13.5 - 17.5)
Platelets: 56  (normal 150 - 425)
ANC:  3149  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Officially off TPN

Day 127 -- (Day +19)

Tuesday.  Riley is free!!  He has been attached to the IV pole for 30 days!  It wasn't any ordinary IV pole either with regular saline fluids...  I'm talking a serious hefty pole.  Trust me, I toted that thing around during our walks every day!  He was speaking with the nutritionist this morning as Gina tinkered with his lines and a bit later he got up to use the bathroom and exclaimed... "Mom, I'm not attached!!" :)  Really exciting.  Later Gina said, "I knew he didn't notice... I thought it would a great surprise!". 

This afternoon, Vince and I were able to attend a lunch at the Arizona Inn (beautiful!) by the wonderful organzation, "Jazmyn's Lunch Break".  They are wondeful people who have been through their own medical ordeal and are giving back to families with seriously ill children.  We were their guests today.  We have known Jazmyn and her mom Lisa since Riley was diagnosed in December.  Very caring and wonderful people who know what it is like to be in the hospital for so long.  Jazmyn went to 6 different hospitals (including UMC) during her year of treatment.  She is encouraging to Riley and fun to be around.  So thankful for people like this!!

Labs today:
White blood cells:  4.5  (normal 4.5 - 13.5)
Red Blood cells:  12.6  (normal 13.5 - 17.5)
Platelets:  58  (normal 150 - 425)
ANC:  3645  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 126 -- (Day +18)

Monday.   Riley shed half his IV pole today.  Awesome!!  Every single day during rounds, the doctors are amazed at Riley's progress and have given us the going home date of this coming Sunday or Monday!!!  YEAH!  He has a little work ahead of him.  He has been weaning off the TPN and eating more on his own.  They are continuing to switch over medication from IV to pill.  His numbers need to continue to be monitored and he is being weaned off the methadone.  ...
Saturday night Riley had some diarrhea.  We thought maybe it was some graft vs. host starting.  He then felt "really uncomfortable in his own skin".  He felt very hot and then cold.  Over night he would get so hot for awhile that he would sweat through his beanie.  He then would get very cold and put on a new beanie and ask for extra blankets.  Then sweat through that one.  In the morning explaining his symptoms during rounds, Dr. Gupta knew exactly what it was... he was having withdrawals from the morphine.  Even though he was weaned off, he needed a bit more weaning.  Methadone is used to to treat withdrawal symptoms and to help wean. It has definitely helped and he is on a schedule to be off by the time we go home.  Progress.  He is doing awesome!

Labs today:
White blood cells:  4.1   (normal 4.5 - 13.5)
Red Blood cells: 11.6  (normal 13.5 - 17.5)
Platelets: 54   (normal 150 - 425)
ANC:  3198   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 125 -- (Day +17)

Sunday.  This is my corner.  I like to keep track of the numbers and see the trends. Maybe a little OCD of me :)  ... It is how I stay "in control".  Since I really have no control over this whole situation, it has been my way to cope.

Really interesting...


                                     (normal 4.5 - 13.5)                     (normal 2,000 - 5,000)
Day                            White blood cell count                           ANC

0 (transplant day)                 2.5                                                2275
+1                                         1.6                                                1376
+2                                           .4                                                  252
+3                                           .2                                                      0
+4                                           .1                                                      0
+5                                        < .1                                                      0
+6                                           .1                                                      0
+7                                           .1                                                      0
+8                                        < .1                                                      0
+9                                           .1                                                      0
+10                                         .1                                                      0
+11                                         .2                                                      0
+12 Engraftment                    .3                                                    72
+13                                         .6                                                  312
+14                                       1.2                                                  648
+15                                       1.8                                                1278
+16                                       2.7                                                2106
+17                                       3.8                                                2660
           

So cool to see the numbers headed in the right direction!  Love that he is close to, or in the "normal range".  Although his numbers are looking normal... the cells that he is developing are just "baby cells".  Unable to protect Riley like a normal immune system should.  It will take time.  The next 6 months are very important.  After he gets off the Cyclosporine (anti rejection medicine), he will be doing better, but still will require wearing a mask in public and staying away from those who are sick.  It will also be late fall and the beginning of cold and flu season.  Just not worth the risk.  Riley will be doing online school next year and continue skyping into church.  The doctors say it is important to get back to life though.  He can go to the movies... but like on a tuesday, in the morning... when no one is there.  :)  It will be interesting to get back into life.  Cautious, but not so completely isolated either. 

Labs today:
White blood cells:  3.8  (normal 4.5 - 13.5)
Red Blood cells:  11.5  (normal 13.5 - 17.5)
Platelets:  48  (normal 150 - 425)
ANC:  2660  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 124 -- (Day +16)

Saturday.   Sleep, sleep and more sleep.  Had to drag that boy out for his walk tonight.  He did it, of course... but in silence.  Maybe half awake.  It is hard work building an immune system.  :)  He is starting to try to eat.  Kinda tough.  Nothing tastes good (or as it should).  His taste buds are wiped out and he has been using a special mouth wash to help him regain saliva.  Platelets dropped some today.  Just praying he won't need too many platelet transfusions while his counts are still coming in.  They say platelets are usually the last to get back.  :/

Labs today:
White blood cells:  2.7  (normal 4.5 - 13.5)
Red Blood cells:  12.2  (normal 13.5 - 17.5)
Platelets:  36  (normal 150 - 425)
ANC:  2106  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 123 -- (Day +15)

Friday.  Riley continues to sleep a lot.  He is still doing his "jobs" of walking everyday, showering and mouth care.  He throws in a little facebook time and rolls over again. 
Today is the second day he has retained some fluids since engraftment. We could see it in his face, and his weight was up and output down.  The doctor ordered lasix (used to reduce swelling and fluid retention) and through the end of today he had a 5 liter output!!  The doctor was completely impressed! 

Riley is handling all of the tubing very well.  It would drive me crazy!  He has to watch all of the tubing very carefully as he goes about his day.  I push his IV pole during our walk and we have to stay in sync so he doesn't get tangled or worse.  He of course has to shower with the pole and just moving about is more complicated with so many channels.

Riley's sugar is up, so they separated the lipids (fats) from his TPN (IV nutrition).  This way the lipids can go in over a shorter period of time.  The TPN goes in over 24 hours, lipids now only 10 hours. Without the fats (smaller white milk looking bag), the bag of TPN is just clear and yellow.  Riley and the nurses have debated on what it looks like... we decided on apple juice. The least offending of the choices.  :) 

Labs today:
White blood cells:  1.8  (normal 4.5 - 13.5)
Red Blood cells:  11.3  (normal 13.5 - 17.5)
Platelets:  51  (normal 150 - 425)
ANC:  1278  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 122 -- (Day +14)

Thursday.  Riley is sleeping and sleeping.
 He will start out watching an episode of "The Office", fall asleep, wake up a bit later and turn on another episode and fall asleep again.  Sometimes I would attempt to turn off his show (because he was falling asleep), and with his eyes closed, he would say, "no mom, I'm watching that".  :)
The Office is getting him through...  laughter is a good thing!

Labs today:

White blood cells:  1.2  (normal 4.5 - 13.5)

Red Blood cells:  12.2  (normal 13.5 - 17.5)

Platelets:  45  (normal 150 - 425)

ANC:  648  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)