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!

Day 61

Saturday. 

Look at us being regular!  Vince and I both watched the boys play their football games this morning.  Oh, the little things we take for granted. 
In their double header, Preston had 3 touchdowns and Wyatt had 1 touchdown plus extra points.  Way to go boys!!
 

Day 60

Friday.  REMISSION!!!!!!!!
Doctor Kopp called as we were just about to leave this morning.  We were headed back to the hospital to find out the biopsy results and to be readmitted to begin the 3rd round of chemo. 

She called hoping to catch us.  She said, "I have good news!" 
My heart skips a beat (or two).

She told us that the biopsy showed no leukemia cells.
They did a second test where a computer reads it, (reads it beyond what the human eye can see).  It also did not show blasts (leukemia cells). 
It did show a few clusters of cells.  Those aren't necessarily bad...  They are now testing those clusters.
The test of the clustered cells will take a few days to get results. Because of that Dr. Kopp wanted to give us the other good news ...that Riley can stay home over the weekend. We will head in Monday morning for the results and 3rd round begins.

Even if those clusters come back as leukemia, they were less than 1%.

Remission for AML is when they find less than 5 % leukemia cells. 


I cannot even describe the feeling.  Really!!
I have sat here for awhile trying to come up with the words and ...  my thoughts are all over the place!  SO HAPPY!  Such relief!  So thankful for this incredible blessing! 
Vince looked at me and Riley after the news and he said it all...  "This is a miracle!!" 
We immediately knelt in prayer, thanking our Heavenly Father for this miracle!!  We know of all the prayer and fasting that took place on behalf of Riley.  How thankful we are for that!
One of my favorite scriptures from my Book of Mormon reading the last few weeks.  ...
1 Nephi 7:12
"Yea, and how is it that ye have forgotten that the Lord is able to do all things according to His will, for the children of men, if it so be that they exercise faith in Him?  Wherefore, let us be faithful to Him."

I knew if we were faithful, if we endured.  If we just believed in His plan for us... Riley would be ok.  We would be ok. 
Riley still has a long road ahead.  This AML does not go quietly...  If there is one little leukemia cell in his body the whole process starts over again. 
 Riley starts the third round on Monday.  He will then have conditioning chemo to prepare for transplant and then of course the bone marrow transplant.  Again we are blessed though... To have a sibling donor is HUGE!  It will give Riley the best chance that the transplant will be the cure. 
The facts are, if Riley did not get into "remission" before the transplant... the chances that the transplant would cure him are not good.  We needed this miracle!!  and that is what it is!!  (Smile)

Day 59

Thursday.  Man this day went fast.  I thought we had ALL day to just enjoy the day at home... and we did.  It just went way to quick!!  Riley has enjoyed his freedom and it has been great to see him do that.  Fixing himself food, (rather than ordering from the same menu for every meal).  He is enjoying the kids.  Playing and laughing with Bryant.  Talking to the older kids.  Just enjoying his space.  Room to roam.  Nice. 

All Five at home.

Day 58

Wednesday.  Biopsy Day.  Riley and I headed down to the hospital at 7:50 this morning.  We went directly to the hem-onc clinic to get blood drawn.  They needed to make sure that Riley's numbers were going in the right direction.  (That his platelets were high enough to go through the bone marrow biopsy).  We waited for awhile... chatting with the transplant nurse.  Then our social worker came by.  Finally around lunch the numbers came in. 

Labs today:
White blood cells:  2.7  (normal 4.5 - 13.5)
Red Blood cells: 10.2 (normal 13.5 - 17.5)
Platelets: 122  (normal 150 - 425)
ANC:  702  ( < 500 = severely neutropenic)

WHAT!!!!??!!
Our brains can hardly comprehend what those numbers mean!!
ANC   702... really ??
White... 2.7  !!!
I can't help but scan the paperwork for blasts.  With that number of white blood cells, ... is he producing blasts? 
Or is this a good sign?  He did NOT do anything like this last cycle. 

Oh, the waiting game. 

Riley got in "line" for the biopsy.  We went through pre-op.  I waited in the waiting room.  I went to see Riley in recovery.  He did awesome!!  We waited for a bit at the pharmacy.
Now we will wait for the results...

Day 53

Friday.  Happy 16th Birthday Riley!! 
Yesterday Chelsea, the child-life specialist, came in to warn Riley that the doctors were planning something for his birthday.  She gave him a few cans of silly string to defend himself!  :)  So this morning, Riley was prepared!!  Hilarious!!

We are so thankful for the very fun doctors and nurses that made Riley's morning  -- one to remember--!!  Riley enjoyed talking to his seminary class and hearing all of the well wishes on his day!  Then throughtout the day, friends sent pictures to Riley of the new "Rally for Riley" shirts that some wonderful friends had made. What an awesome surprise!  (They later told us that they sold out of 50 shirts in five minutes that morning!!)  Amazing!  

Kyle, Kayla, Bryce and Ethan came later this afternoon to wish Riley a Happy Birthday.  A couple of them were able to gets shirts. 

Chelsea decorated for Riley's party in the "classroom".  She brought us over to check it out.  Look at that awesome cake!!  A great organization, "Icing           "  makes cakes for kids in the hospital and Chelsea set Riley's up a few weeks ago!  She nailed it with the Eagles theme for sure!!  We were completely shocked!  Chelsea said she would handle the cake... but I had no idea!!  Wow!

Bryant was so excited to get Riley a "massager".  He picked it out for Riley all by himself!!  He couldn't wait to give him a "massage!"  We enjoyed the time visiting together.  Loved the cake.  Riley continued to have guests throughout the evening.  He is very loved!! 

What a wondeful day we all had with Riley.  It is great to be around him and his positive spirit.  He is happy and kind and funny.  Smart and helpful and incredibly brave.  We love him very much!  Vince and I feel very blessed to be his mom and dad! 

After the busy day, when all the guests went home, Riley took his shower and got ready for the night.  The nurses changed his bedding as usual and put on a happy birthday pillow.  We chatted for awhile and just soaked in the time together.  Blessed.

(Riley's Birthday wish came true... 2, count them ... 2 neutrophils!! :)

Labs today:

White blood cells: 0.7 (normal 4.5 - 13.5)
Red Blood cells: 10.1 (normal 13.5 - 17.5)
Platelets: 29  (normal 150 - 425) 
ANC:  14 ( < 500 = severely neutropenic)

Day 52

Thursday. Doctor Kopp asked Riley if his birthday wish could be neutrophils, (white blood cells that fight infection). Haha, we had a good chuckle over that one... no, but really Riley... neutrophils. :)

It was a good day. Still at the bottom of the numbers though, which means not feeling the greatest. Riley is so tired. Nana and Papa brought balloons for Riley's birthday and he slept right through their whole visit. 

Sister Clark, Riley's seminary teacher, surprised Riley tonight. She brought lots of love from his class. Treats and a huge card from all the kids. Sister Clark even brought a balloon representing each member of his class. Twenty three in all. It was so cool to see her walking down the hall with all those balloons and surprise Riley who was out for a walk.  We appreciate her upbeat spirit and understanding heart.  

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 9.9 (normal 13.5 - 17.5)
Platelets: 29 (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic)