Day 68

Saturday.  This was a busy day.  I spent the night last night, but left early this morning to get home to the other kids.  They had football games and cheerleading, and Vince had to be at work.  Some days it is just a balancing act.  I had texted Riley in the afternoon and assumed all was well.  But by the time I was able to return to the hospital it was around 5:00pm.  What did I find??  My Riley sleeping.  Sleeping all day long.  This past week of chemo really socked it to him.  He was so worn out.  The only problem?  He hadn't eaten anything all day.  I assumed he had because when I texted him he was about to order food.  I guess he didn't quite get that far before falling asleep again.  When I realized this, Riley was barely waking up.  Still very groggy.  He didn't feel like eating right then and we decided that it would be a good time for his walk.  That would wake him up... and his appetite.  We went out in the hall and chatted with a few nurses who were thrilled to see Riley awake and moving.  Riley warned me that we better start moving (it is hard to breathe with those masks on if you are standing still).  So we barely make it around the corner and see Carla, a favorite nurse.  She stops us to say hi and within seconds, Riley is leaning on his IV pole and announcing in a fading out kinda way, "I'm  gonna black out"!   We get him to a nurses chair in the hallway.  Carla races down the hall to get the blood pressure stuff and Riley is swarmed with nurses.  One is checking his blood sugar.  One is getting a throw up bucket.  One is getting him juice.  One is taking his temp.  One is taking his blood pressure. Which by the way, has tanked.  He looks paler than usual including his powdery white lips.  We roll him in the chair back to our room and once they get him in bed they put the head of the bed super low and his feet super high.  They start the oxygen and within minutes, his coloring in his lips come back and he is talking with the nurses like he was totally fine.  They all commented how he must of just wanted all of their attention tonight,  ... how they know that he likes to keep it interesting on a Saturday night.  etc. etc.   After he was doing better, I went out to get dinner.  Riley really wanted Boston Market.  A little while later we were checked on by the "dizzy doctor".   She ran some early labs on Riley.  Besides not having any food in him... this is not unusual after the higher dose chemo he got this past week.  Hang in there Riley!!  You are doing great!!

Labs today:

White blood cells: 2.6  (normal 4.5 - 13.5)

Red Blood cells: 9  (normal 13.5 - 17.5)

Platelets:  207   (normal 150 - 425)

ANC: 2,158  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 67

Friday.  Riley and I stayed up way too late tonight.  He was playing games. We ordered french toast sticks (a favorite).   I was trying to catch Riley up with his courage beads. We had fun with the night nurses and techs.  They were getting into our courage bead work.  They helped fill in a few, like our 100th and 200th beads, and a special one Riley got to pick out for "going home".  It was amazing (as we caught up to current) to see how far we've come!  As I held the beads from end to end, it was like a jump rope, all the way to the ground.  Each bead representing an accomplishment or a procedure or a good or hard day.  This program is so great!  It visually shows what Riley has been through.   It truly shows his courage!

Labs today:
White blood cells: 2.9  (normal 4.5 - 13.5)
Red Blood cells: 9.8  (normal 13.5 - 17.5)
Platelets: 218  (normal 150 - 425)
ANC:  2,552  ( < 500 = severely neutropenic)   (normal 2,000 - 5,000)

Day 66

Thursday. 

I went home this afternoon to be with the kids.  Nana spent the afternoon and night with Riley.  What a blessing that they are able to have time together.  It was also wonderful to spend a regular night at home with my other sweet kiddos!

Labs today:

White blood cells: 2.6   (normal 4.5 - 13.5)

Red Blood cells: 10.0  (normal 13.5 - 17.5)

Platelets: 227  (normal 150 - 425)

ANC: 2,158  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 65

Wednesday.  AWESOME!! 
The Davis Family, wonderful people we knew when Riley was a little toddler, heard about our boy and did something amazing!  They sent Riley a signed Michael Vick Eagles Jersey!  Incredible!  What a wonderful surprise.  He could hardly believe it as he opened the package!!  Thank you Brenden and Tanya!!  It has been so great to hear from and know of the support that we have from all over!!  What a boost and fun distraction for Riley! 

Labs today:
White blood cells: 2.4  (normal 4.5 - 13.5)
Red Blood cells: 10.3  (normal 13.5 - 17.5)
Platelets: 239  (normal 150 - 425)
ANC: 1,704  ( < 500 = severely neutropenic)  (normal  2,000 - 5,000)

Day 64

Tuesday.  Happy Valentines Day!

This cycle is kicking Riley in the rear!!  He slept most of the day.  Because of the high dose cytarabine that he is getting, he gets eye drops every 6 hours to prevent cataracts and other eye problems.  Riley is hooked up to the heart monitors, blood pressure cuff and pulse oximeter (monitoring oxygenation) during one of the medications.  This cycle is only 5 days of chemo, but hits with a powerful punch! 

Grandma and Grandpa brought Bryant to the hospital today.  He had a Valentine for his momma!  So sweet!  We had a nice visit.  They opened the presents that Riley got for them at the boutique yesterday.  Bryant loved it!!  Riley slept through most of their visit. 

Riley's Spanish teacher, Mrs. Pelter, brought Valentines that her class made for him.  Most were written in spanish.  Vivian was our nurse tonight and helped translate a few phrases. Haha.  Very funny!  The nurses also put a heart envelope on Riley's door and throughout the day nurses, techs, even housekeeping dropped in a Valentine for Riley.  We had fun tonight watching a little of "Charlie Brown's Valentine Special" and looking through all of the treats and cards... glitter and all.

Labs today:

White blood cells: 3.6  (normal 4.5 - 13.5)
Red Blood cells: 10.5  (normal 13.5 - 17.5)
Platelets:  220  (normal 150 - 425)
ANC:  2,340  ( < 500 = severely neutropenic)

Day 63

Monday.  We came into the hospital this morning around 10am.  Riley is ready for the 3rd round.  He has an incredibly brave attitude about just doing what he needs to do.
He gets reaccessed and blood drawn in the clinic.  The nurses are thrilled to see Riley and ask all about his time off.  An awesome group came in and set up a "Valentine Boutique" for the patients to pick out gifts for their loved ones.  Riley picked out gifts for our family as I unloaded the car.  He picked out very thoughtful presents.

We get set up in our room and Dr. Kopp talks to us about the new round. 
The test of the clustered cells did not give any new information.  The doctor felt fine about that because we are still under the 5%.  So remission is remission.  yay! 
The blood work labs came back and showed incredible recovery!!  Our Dr. was very impressed with Riley's ability to bounce back.  AWESOME!!  Really awesome, ... but hard for me, the mom, to bring my child back to the hospital to be brought back down to the bottom again after trying so hard to recover.  I know, I know... if we didn't continue it would just start all over again.  That is the beast of this disease. ...

This round will only be 5 days of chemo.  It is a heavier hitting dose, but less days.  The chemo started at 2pm.  There are 2 medicines and they each take an hour to go in.  So Riley was finished a little after 4 this afternoon.  One of those medicines runs every 12 hours, so he also gets it at 2 in the morning. 

When talking to a nurse this morning, Riley compared this upcoming round and then the transplant as -2 long drives-.  That's my boy... putting it in football terms. 
It has been wonderful to be home and remember what life is really like outside the hospital.  To realize that there is a light at the end of this tunnel.  But for now... there is work to be done!

Labs today:
White blood cells:  3.9  (normal 4.5 - 13.5)
Red Blood cells: 11 (normal 13.5 - 17.5)
Platelets: 236  (normal 150 - 425)
ANC:  2,145  ( < 500 = severely neutropenic)  (normal 2,000-5,000)

Day 62

Sunday.  Today was a very special day.  Riley was ordained a priest.  The Bishop and Brother Lamoreaux (YM president plus our home teacher) came over.  Grandma and Grandpa and Nana and Papa of course were here too.  Vince did a wonderful job and gave a beautiful blessing to Riley.  We sure are proud of our boy!!  He has lived his life worthy of this and continues to be an amazing example even through a very difficult trial.  We feel so blessed that this ordination could happen at home, instead of the hospital.  We are just soaking in the good feelings right now!!

After church today we made sugar cookies.  First of all, it is a tradition (Valentines).  Secondly, a bit of a celebration for Riley's remission!!  Hooray!! :)  It has been a great day!