Day 78

Tuesday.  Where do I start??  Yesterday kinda blended into today as we stayed up all night long!!  Riley's pain continued to get worse and worse.  It was incredible pain and suffering all night.  The doctors tried morphine and it did nothing for him!  Even giving him up to a full adult dose.  They tried other medications and one relieved his pain for about 20 minutes.  I know this because at 2 in the morning I'm watching the clock, thinking, oh, thank heavens! And then, wham, 20 minutes later we were right back where we started.  He threw up several times in the night and the pain was so intense. They decided to take him down to the ER to get x-rays.  3 different views of his abdominal area.  (A single view x-ray they do in his room, so he doesn't have to leave the unit.)  He was in a lot of pain and completely exhausted at this point.  We came back to our room and everything we tried did not ease his pain.  Our poor nurse, Carla.  She tried everything!!  The x-ray still showed constipation, but our doctor knew this kind of pain was not right.  She knows Riley is a tough boy. ... We are dealing with something else.  Even though he didn't have a fever, he didn't show signs of anything beyond the pain and constipation,  she decided to start him on 3 different antibiotics.  They took a blood culture and we just hoped that would start to ease some of the pain.  A few hours later around 5 AM, he finally started to relax enough to fall asleep.  The moaning and tossing and turning eased up so I was able to close my eyes too just after 5AM.  At 6AM the doctor came in and said that his blood count came back and he was low on platelets.  They were going to give him a transfusion now because of the risk for bleeding and the unknown situation in his stomach.  At 7:00AM the resident walks in and Riley sits up in bed wheezing.  On top of everything else he is having an allergic reaction to the platelets again!!  Really??  Our room fills up with doctors and nurses and the RT.   My poor boy!  Now they need a chest x-ray of his lungs.  At least he is no longer in constant pain. 
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This afternoon we found out his blood culture is growing bacteria.  He has an infection for sure.  The fact that it grew within 12 hours is not a good sign.  That means it is a pretty bad bacteria.  With not much to go on, our doctor made the call last night to start Riley on some very powerful antibiotics, one especially for the gut.  I'm feeling very thankful for that decision right now.  As they are giving us this news, and talking with Riley and he is doing pretty well under the circumstances... we know that the antibiotics are doing their job.  Riley will now have a CT scan this afternoon to look at his bowel area for infection.  Where is it? 
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In order to do the CT he needed to drink a huge amount of this "berry" flavored drink.  They reminded Riley to take his time with it because it needed to "stay down".  I knew he didn't want to do it, he was still so tired from our long night and still not feeling well in general. He was incredibly brave and finished the whole thing!  We went down to get the CT scan and they needed to put an IV in to add the dye to the contrast of the bowel area.  After 2 pokes they found a PICC guy that has this fancy machine (like an ultrasound).  He saw that not only were Riley's veins shot from the chemo, but his nerves were right on top of his veins making each poke very painful.  He is tough!  They got the IV in, did the scan and got Riley back up in his bed.  Recover time. 
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(Tuesday night.)  Riley is so hungry right now.  He has not eaten since Monday's breakfast.  Up until now food was the last of his worries, but he is starting to feel hungry.  Unfortunately we have to wait for the CT results.
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(Tuesday 10PM)   Doctor just came in and informed us that Riley has "Typhlitis".  A very serious infection.  It is inflammation of the colon.  This infection is seen in neutropenic patients.  It is from bacteria normally found in the gut, but has gone unchecked because of the patients low white blood cell count.   Infections happen quickly to neutropenic patients because they have no line of defense and their body does not show the normal signs of infection either.  We are very lucky because even though Riley has typhlitis, it is a mild case.  We caught it early!  If gone untreated it could cause death of the intestinal wall, holes in tissue, damage to other organs.  Sometimes surgery is required and there is a 50% chance the patient doesn't make it at all.  Scary!   We felt incredibly lucky with this news and so the next bit of news was not so terrible to hear.  --The treatment for typhlitis is to not eat or drink anything for several days.  They need the inflammation to go down before he can put anything in his stomach.  Incuding water.  All his meds will be IV now except one (because that IV med causes liver damage).  He is allowed a small sip of water to get that one down.  They will start him on IV nutrition in a few days if the inflammation still is not better by then.  For now the IV fluid is enough.  Riley was a little bummed not to eat, but it is better than the alternative.  We are thankful tonight for good doctors, for the inspiration they received to help our boy.  Now we are tired.  Ready to get a good night sleep.  I have never been so happy to close my eyes, feeling a little peace... knowing that my Riley is doing the same. 

Labs today:
White blood cells:  .3  (normal 4.5 - 13.5)
Red Blood cells: 11.2  (normal 13.5 - 17.5)
Platelets:  18  (normal 150 - 425)  (one unit transfused)
ANC:  15  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 77

Monday.  Today started out like any other day.  The docs came in for rounds, we talked about Riley's numbers.  His red blood cell count was low and he would need two units today.  As they were leaving I mentioned that Riley's stomach hurt a bit ever since last night, but it was off and on pain.  I figured that's why he didn't mention it himself.  I, on the other hand, like to inform the doctor of anything and everything... that is my job :)  So Riley agreed that it had been hurting, but "it wasn't a big deal".  The pain became a little worse as the morning wore on, still "not too bad" said Riley.  The doctors wanted an x-ray, just to see what was going on.  They figured constipation was the culprit.  As it turns out, they were right.  So we have been doing lots of walking and even ordered prune juice and carrots from the cafeteria.    Early evening time the pain has been significantly worse.  We are waiting on some medication to do its trick. ... nothing yet.

Labs today:
White blood cells:  .6  (normal 4.5 - 13.5)
Red Blood cells: 7.7  (normal 13.5 - 17.5)  (2 units transfused)
Platelets: 29  (normal 150 - 425)
ANC:  6  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 76

Sunday.   The amazing YW in our ward made this candle for Riley.  They dedicated their work toward their YW personal progress to Riley to show their love for him.  Each color represents a value they worked on and when they accomplished a goal toward their medallian, that is represented in gold.  Awesome!  I was very touched today to be presented with this candle for Riley.  We are so thankful and always aware of the amazing support that Riley and our family receives!!  Thank you, just does not seem to convey our overwhelming gratitude to so many who comfort and are helping us along this journey.  The words "Thank you" do not feel like enough, nevertheless, THANK YOU!  For each prayer and kind, encouraging word, THANK YOU!  For every meal brought to our home, THANK YOU!  For every contact made with Riley to lift and listen... THANK YOU!!  THANK YOU!!  THANK YOU!!

 

Riley was asked to speak via Skype at a Stake Youth Fireside.  Tonight was the night.  I am  incredibly proud of his willingness to give the talk, especially under the circumstances.  His blood count levels have just hit the bottom, but he is a determined young man! 

Riley did a fantastic job on his talk!  He is a great speaker!  I'm so proud of him!  This would have been a challenge for any 16 year old.  Throw in cancer and being in the hospital while giving a talk and , well,  ... I'm very impressed!!  Great job Riley!!

We all thought it was pretty funny that he gave this talk with a shirt and a tie ... and shorts and slippers.  Haha!  It was wonderful to have Nana and Papa here for the talk.  Vince took the kids to the stake center to watch it there.  What a great night! 

Labs today:

White blood cells:  .5  (normal 4.5 - 13.5)

Red Blood cells:  9.1  (normal 13.5 - 17.5)

Platelets: 47  (normal 150 - 425)

ANC:  10  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 75

Saturday.   "Mom, are you really taking another picture."     ...   umm, yes.  :)

Labs today:
White blood cells:  .6   (normal 4.5 - 13.5)
Red Blood cells:  8.7  (normal 13.5 - 17.5)
Platelets:  52   (normal 150 - 425)
ANC:  18  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 74

Friday.  Aunt Angie sent Riley a care package. It included so many fun items. First of all, some pretty awesome hats, punching balls to "knock it out!" and some old photos of Riley as a one year old.

Also this cool shirt that Gavin insisted getting Riley "For Sundays". So sweet!! What a pick me up!

Grandma and Grandpa, Vince and the kids came by to see Riley after going to a U of A baseball game. They brought a pizza and it was fun to hang out for awhile. Nice day.

Labs today:
White blood cells:  .6  (normal 4.5 - 13.5)
Red Blood cells:  9.3  (normal 13.5 - 17.5)
Platelets:  21  (normal 150 - 425)   (one unit transfused)
ANC:  54  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 73

Thursday.  Riley had a fun visit from our neighbor Shelly today.  She always knows just what to say to Riley.  She is a nurse for adult chemo patients, so she really does know what to talk about, she answers questions, she is very funny.  It mentally helps Riley every time she comes!  So supportive!!  She also brought some goodies today.  A cartoon zombie picture for his room and this amazing jersey!!  Shelly's husband Todd ordered this for Riley!  Awesome!  Riley said, "Ooo, my name looks good on there!!"  haha!   Thanks Todd!!!  What a treat!

Labs today:

White blood cells:  .7   (normal 4.5 - 13.5)

Red Blood cells:  9.6  (normal 13.5 - 17.5)

Platelets: 43  (normal 150 - 425)

ANC:  175  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 72

Wednesday.  Today was our meeting with the transplant team.  Dr. Katsanis, Tina the transplant nurse and Sara the social worker.  The Doctor explained to Vince, Riley and I the process and what to expect.  It was a positive meeting, but so much information!! 

There are two ways they could harvest the stem cells from Preston.  The doctor explained  that they have decided to collect the stem cells peripherally (from the blood stream), instead of directly from the bone marrow in the hip.   Prior to the collection, Preston will receive filgrastim (neupogen) shots.  He will come in to the hospital every day for 5 days before the transplant to get these shots.  Filgrastim causes blood stem cells to produce and move out of the bone marrow into the bloodstream where it is collected with an apheresis machine.  Usually a needle is inserted into a vein in each arm of the donor.  Tubing connects the needle to the apheresis machine which removes blood from one arm, separates out the stem cells and returns the remaining blood product to the donor through the needle in the other arm.   Because of Preston's age and his smaller veins and the size of the needle, they want to surgically put in a central line under his collar bone to collect the stem cells.  It is surgery to get the central line placed and then another surgery to take it out a day or two later.  The doctor feels this will be the best option for Preston.  The actual harvesting of the cells on transplant day takes about 6 hours.
The doctor explained that they decided to collect peripherally because of the better chance of getting graft -verses- host disease.   ??  I know, that doesn't really make sense.   I'll explain.   Although graft -verses- host disease is very serious and they try to prevent it, they hope Riley will get a mild case of it . If a patient gets graft -verses- host they also have "graft -verses- leukemia effect".  This means that along with Preston's T-cells fighting against Riley's organs and tissue, it would also find and kill any lingering leukemia cell left after transplant.  They have chosen this route because Riley did not get into remission after the first round of chemotherapy.  Not getting in remission after round  #1 puts him in a high risk category.   Also the chances of relapse go down dramatically with the graft -verses- leukemia effect.  ...Sounds like a crazy balancing act!

The nurses in our unit have been giving us info here and there. Stuff like...

"Oh, Riley won't even remember the hardest few weeks. He'll be using his morphine button and just getting through".

"Riley won't eat for a few weeks. He'll be on IV nutrition."

"After the transplant we will weigh Riley twice a day to better monitor his fluids."

"Riley is not going to like us very much after the transplant. We are going to force him to get out of bed to walk and shower when he feels like that is the last thing he wants to do!


I have been reading a book on Bone Marrow and Stem Cell Transplants.  A little overwhelming.  There are entire chapters on "Liver complications",  "Graft- verses- Host Disease" and "Infection- (bacterial, viral, fungal)".  Although there are many side effects that Riley will experience and potentially could cause complications.   Most of those side effects will get better as time goes on and his new cells engraft and begin producing normal blood cells.   There are however, some long term side effects from a transplant that could occur, but the risk of those complications is worth taking compared to the alternative.  This will not be easy.  We are and have been preparing ourselves.  This is a life changer.

The book talks about "deciding to have a transplant".  How it is a hard and emotional decision.  I think... We didn't decide this... This is just the next step on our path.  It is scary, but when it comes down to it... we don't have a choice.  This is what we are doing.   Although we are faced with a tough time ahead, we are going into it in the best of circumstances.
 
#1  We have a matched sibling donor!!  Preston is very tough. 
#2  Riley is in remission!!  Which gives the transplant the best chance to work. 
#3  Riley is so strong!!  He is very tough both physically and mentally. 
#4  We are in great hands!!  The doctors and nurses who care for Riley are incredible!  They are not only good at what they do, but they are so compassionate and kind! 

We have a tenative schedule of the upcoming events leading up to the transplant. 
*Preston will give a blood sample.  (10 tubes!)
*Riley will also give 10 tubes for testing.
*Preston will get a complete physical.
*Riley will also be evaluated and tested and scanned for everything. (heart, lung, etc.)
*We will have a family conference with doctors, Riley and Preston.
*Riley will get a central line put in, (surgery). (His port only gives one access point.  He will require several for the amount of medications that he will be getting.  This central line will stay in for around 6 months).
*Riley will start his preparative regimen.  (8 days of high dose chemotherapy -to completely destroy his immune system)
*Preston will get 5 days of neupogen shots. 
*Preston will get a central line put in, (surgery).
*TRANSPLANT DAY - Preston's cells will be harvested.  Riley will receive the new stem cells transfused.
*Preston will have surgery to take out the central line. 

We have a tenative date to begin, but it all depends on Riley's numbers.  The blood tests and check ups begin early March and we will go from there.  Hopefully Riley's numbers will be good enough to have his biopsy for this round on March 7th.  Time will tell.

On another and much more fun note...
Trent came to visit Riley today.  It was nice to just hang out and talk about regular stuff.  Good day!

Labs today:

White blood cells: 0.8  (normal 4.5 - 13.5)

Red Blood cells: 10.2   (normal 13.5 - 17.5)

Platelets: 74  (normal 150 - 425)

ANC: 448  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 71

Tuesday.  Riley loves to watch "The Office".  Often, if he is not feeling well, he puts on a few episodes.  That will always raise his mood!  We enjoy watching it together too.  Riley even has an "Office" trivia app.  It is fun!   Laughter really is the best medicine! :)

Labs today:
White blood cells: 0.9  (normal 4.5 - 13.5)
Red Blood cells: 7.8  (normal 13.5 - 17.5)  (2 units transfused)
Platelets: 105  (normal 150 - 425)
ANC: 522  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 70

Monday.  I spent the night last night here with Riley, but left early this morning to get home before Vince left for work and to get the kids off to school.  Juggling.  I had a nice morning with Bryant and then got him off on the preschool bus at noon.  I then came back to the hospital.  Good day with Riley.  Still very tired, but handling everything very well and getting all his "jobs" done!  (walking, showering eating).  Grandma and Grandpa came back to help us this afternoon.  We are so thankful for all of the support we are getting!

White blood cells: 1.2  (normal 4.5 - 13.5)
Red Blood cells:  8.3  (normal 13.5 - 17.5)
Platelets:  135  (normal 150 - 425)
ANC: 924  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 69

Sunday.  Vince spent the night last night with Riley and enjoyed church with him today.  Riley is still super tired.  The Thurbers came to see Riley later this afternoon and he slept through their whole visit.   So worn out!!

White blood cells:  2  (normal 4.5 - 13.5)
Red Blood cells:  8.6  (normal 13.5 - 17.5)
Platelets:  164  (normal 150 - 425)
ANC:  1,620  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

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!

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)