Day 101 -- (Day -7) to transplant day

Thursday.   I am amazed and completely impressed with how well Riley has handled the conditioning chemo so far!!  I expected it to knock him out, but he is still up.  He is on facebook, texting... we even finished season 3 of "24" today!  He is laughing and smiling .  He is however losing his appetite... We know this happens with chemo... we know it will get worse with the mouth sores and pain that will start next week...  But for today, he is hanging in very well!!  Go Riley!!

Labs today:
White blood cells: 3.7 (normal 4.5 - 13.5)
Red Blood cells: 11.3 (normal 13.5 - 17.5)
Platelets: 130   (normal 150 - 425)
ANC:  1390  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 100 -- (Day -8) to transplant day

Wednesday.  This is Jay.  He is a volunteer with a wonderful organization called  Tu Nidito "your little nest".  He has come to visit Riley almost every single wednesday from the beginning.  Jay is a great example to Riley and a fun guy to be around.  They like to talk about sports and video games and whatever else is going on at the time.  Today Jay told Riley that he got accepted into medical school!  Something he has been working on for a very long time!  They talked a lot about goals today and what Riley's were.  No pressure though :) just things he liked and wanted to do some day.  I am thankful for good people in our lives. 

Labs today:
White blood cells:  2.8  (normal 4.5 - 13.5)
Red Blood cells: 11.5 (normal 13.5 - 17.5)
Platelets: 128   (normal 150 - 425)
ANC:  1098  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 99 -- (Day -9) to transplant day

Tuesday.  The swab came back negative for any viruses.  We are thinking Riley's gunk is from allergies.  It unfortunately is draining in his throat causing coughing and soreness.  At least it wasn't the flu!!  Very thankful for that! 
Riley had a hard night last night.  Right before they started the chemo at 4 am, he woke up in a whole lot of pain from shoulder to shoulder.  The surgeon did say that his line was quite difficult to put in because of scar tissue from his port in the area.  He had to put a wire in to tunnel the way.  Yes, that could get ya up in the night with some pain!!  He tried heat packs and some more mild pain relievers and then just went for the morphine that the nurse was offering.  I don't think he believed that the morphine would work, since it did not with his gut pain from his infection.  It sure did do the trick though and Riley was finally sleeping again.  In the morning, Dr. Kopp greeted him with "Happy 8 day!!"  (search Brian Regan... very funny!)  Riley introduced many doctors and nurses to the classic --ER - pain scale-- bit.  They had to say it!!  I was relieved that he handled the morphine so well, knowing that he will be on that quite a bit through the transplant.  Looks like we are full steam ahead.

Melissa was Riley's nurse again today.  Yesterday they had many conversations about how wonderful  peeps are and today she brought him a box in every color!!  YUM!  She is wonderful! 

Labs today:
White blood cells: 2.8  (normal 4.5 - 13.5)
Red Blood cells: 10.8  (normal 13.5 - 17.5)
Platelets: 135  (normal 150 - 425)
ANC:  1232  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 98 -- (Day -10) to transplant day

Monday.  Today Riley was readmitted to the hospital.  We first went to the clinic to get reaccessed and blood drawn for levels.  We also informed our doctor that Riley woke up with a slight sore throat. (Not good timing).  They did a swab up his nose to check for any upcoming sickness.  Depending on the results, we may have to postpone the chemo a few days.  After they got the blood count results, we headed down to surgery to be checked in to get a central line placed.  Riley handles the anesthesia very well.  He actually likes it.  He always chats it up with the anesthesiologist before any procedure.  Today was no different. :)  This new central line will give the doctors more access (to give medications) than just his port.  The central line will stay in for 3 to 6 months.

After the surgery we were brought up to Diamond 6 West.  Back to room 6117.  Our home away from home.  We got settled in and they started Riley on "Keppra".  It is a medication used to prevent seizures, since the first conditioning chemo Riley will get is known to cause seizures, (Busulfan).  Busulfan will be administered every 6 hours, (taking 2 hours to go in) for 4 days.  It is very heavy hitting and he won't get much of a break.  The cool thing about Busulfan is, after the first dose  (Tuesday 4 AM) they will draw Riley's blood at 6am, 7am, 8am and 10am.  Those blood levels will be sent to a lab in Seattle which will see how well his body metabolized the busulfan, giving them the exact dose his body needs to be effective.  They will then make the adjustment for the remainder of doses to have it equal out the exact amount Riley needs.  Science is cool. 
Riley had a wonderful attitude about heading back to the hospital today!  He is focused and just wants to get this transplant done!!  Whatever it takes, that is what he will do!  Very proud of him!

Labs today:
White blood cells: 4.2  (normal 4.5 - 13.5)
Red Blood cells: 12.5  (normal 13.5 - 17.5)
Platelets: 154 (normal 150 - 425)
ANC: 2604  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 85

Tuesday.  The resident brought in Riley's bloodwork numbers this morning, that is routine.  What is not routine are the numbers.  His white blood cell count continues to go up ... and he has neutrophils today... 6 of them  ??  Which makes his ANC jump up.   Without saying it, Dr. Shutes (the resident) and I are both thinking the same thing.  This looks promising!   I step out into the hall a little while later and see Dr. Kopp.  I say, "What is going on??"  She says (with a nervous look), "I don't know... I've called the lab twice already this morning.  They assure us the results will be back in one hour."   Dr. Kopp says she is headed down to the lab to look at the results herself. 

We wait...

A little while later,
The doctors come to our room with smiles on their faces and give us the most wonderful news...
Riley is still in remission!!  The blasts they saw in his blood work were blasts... a blast is an immature cell.  In leukemia those immature cells never mature.  But they figure that he had "regular" immature cells that would have matured if they stayed in the bone marrow longer, but instead they were shooting out of his bone marrow trying to fight the infection he had.
On Sunday they also said that those cells did not look "normal".  They didn't exactly look like the blasts that they saw at diagnosis, but they were not normal looking either.  As they were able to see them better because of the biopsy, they saw that they were not leukemia cells, and that they probably looked different just from the chemo that he has had. 

ALL IS WELL!!!  We are back on schedule.  Extra chemo averted!!

Riley will be able to go home tomorrow!!  He has to finish his cycle of antibiotics from the infection he had... that will finish tomorrow and we can take our boy home!!  What a roller coaster!  That is cancer... one day you are up, another you are down...     Today we are up!!!  This is a SUPER tuesday (in more than one way:) for sure!

Prayer works!  We are blessed!!

Day 84

Monday.  Biopsy day.  Feeling very unsettled.  It is so hard to wait.  Wait for news that could say we are starting at square one.  Dr. Kopp assures us that we just don't know anything yet for sure.  Tentatively  he will start another round of chemo tomorrow after the results of the biopsy.  After the 6 days of chemo they will only let him recover for one week and then do another biopsy.  Even though he won't be fully recovered, if that biopsy shows no leukemia cells they will start the transplant process (conditioning chemo etc.).  He must NOT show any leukemia cells going into the transplant!  That is crucial.

Waiting is hard.  Feeling out of control is hard.

but...
I do have comfort in the fact that I know my Heavenly Father is in charge.  I do feel peace with that knowledge and I am so grateful to have that knowledge. What an incredible blessing during troubled times!  I am hanging on to that!!!

Labs today:
White blood cells: 1.4   (normal 4.5 - 13.5)
Red Blood cells: 9.2  (normal 13.5 - 17.5)
Platelets: 71  (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 83

Sunday.  Today started out great!  Nana spent the night with Riley last night and so Vince and I went to church together for the first time in a long time.  It was great to know that Riley was taken care of and we could also have time together. 
I noticed I had a message on my phone after church and listened to the message on the drive home.  It was Riley's nurse saying that Riley was fine, but that the doctor wanted to have Vince and I both come to the hospital as soon as we could.  That is never a good thing.  As soon as we got the kids settled at home, we drove right in to the hospital.  Our doctor told us that blasts were showing up in his daily blood work.  They saw some Saturday but wanted to see what happened today.  Blasts were there again today.  Riley has relapsed.  It is completely NOT expected to relapse once you are in "remission",  (when you are still having chemo).  The doctor is very surprised, as are we.  She really couldn't tell us much more.  Riley will have a bone marrow biopsy tomorrow so she can see exactly what is going on in there.  It will take 24 hours for the results, so the plan is to start him on another round of chemo on Tuesday.  This news hits us very hard because this is the week we expected him to come home... to gather up strength for the transplant. 
Our hearts are aching.  Riley has done so incredibly well.  He has been amazing!  I learn from him every day!!  We knew we were heading into a tough time with the transplant... but I guess we have another big hurdle to get through first.  ...

Aunt Renee and cousin Trent came by last night not knowing what we had just found out.  We filled them in.  Their timing could not have been more perfect.  We had some time to digest this news, then we had a great distraction.  Renee brought Uncle Carl's electric guitar!  She must have been inspired!  Riley was so excited and got right into checking it out.  He even found some cool apps to help him learn to play.     **Riley is amazing.  That is all I have to say.

Labs today:
White blood cells: .9  (normal 4.5 - 13.5)
Red Blood cells: 9.3  (normal 13.5 - 17.5)
Platelets:  57  (normal 150 - 425) 
ANC:  0   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)