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)

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)