Day 110 -- (Day +2)

Saturday.   General Conference in the hospital.  I am so thankful for technology for so many reasons.  Today I feel comfort and peace from hearing the words of our church leaders.  President Henry B. Eyring has always been a favorite.  His talk today spoke to my heart.

President Henry B. Eyring

"If we have faith in Jesus Christ, the hardest as well as the easiest of times in life can be a blessing. 

In all conditions we can Choose The Right with the guidance of the spirit. 

We have the Gospel of Jesus Christ to shape and guide our lives if we choose it, and with prophets revealing to us our place in the plan of salvation, we can live with perfect hope and a feeling of peace.

We never need feel that we are alone or unloved in the Lord's service because we never are.

We can feel the love of God,

 ... the Savior has promised angels are on our left and on our right to bear us up and he always keeps his word!"

Labs today:

White blood cells:  .4  (normal 4.5 - 13.5)

Red Blood cells:  7.8  (normal 13.5 - 17.5)   (2 units transfused)

Platelets:  100  (normal 150 - 425)

ANC:  252  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 109 -- (Day +1)

Friday.  Preston had his central line taken out today.  He was very calm.  He asked the doctor if he could keep the line. What a keepsake!  It was a very simple procedure, but he had to be under for it.  After his recovery, we went to the cafeteria for breakfast.  Vince, Preston and I enjoyed some time together and then we went to Riley's room and hung out for a bit.  After a while, Vince took Preston home to rest and recover from the day and week.  They stopped by Dairy Queen for a blizzard on the way home.  Mmmm, Preston has good taste!

Riley started growing in some hair during his recovery stage at home. I am so amazed at how well he bounces back.  Unfortunately, the effects of the conditioning chemo that he just had will wipe it out again.  Those effects are expected any day and will continue until he develops his new cells, (new cells should engraft and start to develop in 2 to 3 weeks).  Chemo kills rapidly dividing cells, good and bad.  That is why your hair goes, but also affected is the mouth, throat and whole GI track. 

Riley has been very nauseous and sick for the past week.  His nutritional numbers are coming back low as is expected at this stage.  He also is starting the mouth and throat sores which make it really hard to swallow.  Dr. Katsanis started Riley on TPN (total parenteral nutrition) today.  The big white bag on his IV pole is the IV nutrition.  It runs for 24 hours.  The nutritional numbers from his labs for that day are analyzed and a new bag is made specifically for him and his needs for that day.  Very cool.  Riley's IV pole is growing.  They have warned us that it will continue to grow as more meds are needed.  This is just the beginning .  Riley is hanging in. 

Angie and her family are headed back home today.  It has been wonderful to have them with us.  Not only has it been great to have cousins to play with, but Angie has been a great help to us while I'm in  the hospital with Riley.  Bryant and Gavin have had so much fun together.  Cute kids!!

Labs today:

White blood cells:  1.6  (normal 4.5 - 13.5)

Red Blood cells:  8  (normal 13.5 - 17.5)

Platelets: 114  (normal 150 - 425)

ANC:  1376  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 108 -- Day 0 (Transplant Day!!)

Thursday.  Today is the big day!!  Preston got his last shot this morning at 8:30. (He acts like it is no big deal. So brave!)  They also drew some blood, but thankfully that new line came in very handy for that purpose.  Susan, our clinic nurse has been so wonderful!!  She likes to call herself a vampire when she has to draw blood.  She is so nice.  Despite Preston's facial expression...we like her. :)

Susan then walked us down to the Red Cross facility in the hospital where they do collections for UMC.   They got Preston all hooked up to the fancy aspheresis machine and man, it is impressive!  Before they started the process, they had Preston pick out a few movies to watch.  We were in the old part of the hospital and they do not have cable there.  In fact, they had an old TV with a VCR!  Preston picked out a few classics! (In VHS:) 

This is the fancy machine that separates Preston's stem cells and returns his other blood back to him. This picture was taken about 45 minutes into the process.
---A little info...
*By the end of the procedure they collected 321 ml. 10 ml of that was red blood cells (A very small amount). They are not trying to get red, but some get collected no matter what. If there were no red blood cells, the color would be more clear, not the red that you see in this picture.
*It took four hours connected to the machine to do the collection. In that time it cycled Preston's blood 4.1 times, with only 1 cup of blood outside his body at any given time.
*The coil of tubing next to the stem cells being collected is a blood warmer. It makes sure the blood is the right temperature before going back into Preston.
*Preston is B positive blood type. Riley is A positive. Because of this they anticipated a possible reaction from Riley as he got the new cells. He ended up not having a reaction at all. (Thankfully!!)
*The most interesting fact is that Riley will now convert to B positive blood because essentially, he will have Preston's DNA.

Not long after these pictures were taken, Preston started to have a little cough.  Then his nose was getting very congested...  It quickly turned into a scary situation as his nose completely swelled with congestion and started to drain, his eyes started to water uncontrollably, his face started to swell, getting puffy around his eyes and his voice sounded different as his throat seemed to tighten.  The nurses stopped the machine and called -everybody- and the room filled up quickly with doctors and nurses.  They gave him a big dose of Benadryl and watched him.  His symptoms slowly got better.  We literally went through two entire boxes of the hospital Kleenex.  My poor boy!  Our children seem to be incredibly sensitive when it comes to allergic reactions... The doctors and nurses had no explanation as to why he reacted.  He is getting his own blood...?  They only added an anti-clotting factor and some normal saline.  They continue to be puzzled. ??

What an incredible brother!!  Preston has been so brave and completely willing to do what ever is necessary to help his brother.  After the collection was complete, they unhooked Preston and the cells were sent to the lab where they were counted and processed.  They needed to make sure there were enough cells for Riley.  If they did not have enough, Preston would have to come in the next day and do it all over again.  Thankfully we got the good news that they had enough!!  Preston was done!

We hung out in Riley's room until the lab sent them up.  Riley will receive the new stem cells just like a transfusion, through his port. 

Chelsea, the child-life specialist, decorated Riley's door with all sorts of football quotes and encouraging words. Chelsea wanted Riley to be lifted when he went out on his walks... to be cheered on and motivated.  What a wonderful thing to do for him!   

Kathie RN, Tina: RN and transplant coordinator, Lucy: nurse practitioner, transplant team, Dr. Katsanis

There it is!!!  The new cells finding their way in the tubing to Riley.  It was quite exciting!  Dr. Katsanis and the whole transplant team stood around watching, counting each drop as it left the bag and entered the tubing.  At the beginning, 14 drops per minute, then slowly increasing.  Our nurses stood over Riley checking temperature, blood pressure, and watching for any other signs of reaction.  This was a big moment. 
(In the end, it took 2 and a half hours for the new cells to go in.  Riley had to stay on all the monitors for 4 hours after the transfusion of new cells.)

After awhile, Preston was ready to head home.  It had been a big day and he had to be back early in the morning to get his central line taken out.
Preston, dad and I are so impressed with your willingness to sacrifice and help your brother.  You have grown the last few months, and I'm  not only talking inches...  (look how you've passed your mom up :) You have also grown in compassion and strength.  So proud of you!  We love you!

Our amazing nurses!!  Melissa, Brittney, Amy and Karen
All of the nurses signed a "Happy Birthday" card for Riley.  It truly is a new beginning for him... a new life.

Preston and Riley each got a "Bead of Courage" to signify the transplant to add the their strand of beads.  This one means a lot... Courage for sure!!

Labs today:

White blood cells: 2.5  (normal 4.5 - 13.5)

Red Blood cells: 9.0  (normal 13.5 - 17.5)

Platelets: 84  (normal 150 - 425)

ANC:  2275  ( < 500 = severely neutropenic

Day 107 -- (Day -1) to transplant day

Wednesday.  Vince and Preston came into the clinic at 7 this morning for his neupogen shot and then off we went to surgery.  Today was the big day for Preston to get a central line placed.  All of those shots have increased the number of stem cells that he is producing and tomorrow they will draw the blood from the first line, it will go through a special machine that will separate his stem cells from his other blood and he will then get the rest of his blood back through the 2nd line. 
Preston did incredibly well today!!  He didn't even seem nervous ... and for Preston, that is really saying something.  To me he seemed calm and brave!  He is doing an amazing thing for his brother!  We are incredibly proud of his willing spirit and calm demeanor. 

Pre-op.  Lauren, a child life specialist, kept us enertained as the doctors and nurses busily moved about. 

After awhile in post op, Preston was discharged and we all went up to see Riley.  Preston is determined and ready for tomorrow!!

My very brave boys!

Day 106 -- (Day -2) to transplant day

Tuesday.  We got to our walk a little late today (10 pm).  This is the new walking outfit.  A nice yellow paper robe, to go with the yellow mask. :)  It will keep "germs" from the hallway from going back into Riley's room.    Riley's IV pole is also growing.  A few new additions for the growing medicine list he is getting because of the transplant.  Big week ahead!

Labs today:





Day 105 -- (Day -3) to transplant day

Monday.  So, the last few days, Riley has been very nauseous and sick.  Nothing is staying down despite the anti nausea medication that he is on.  We have tried several meds and different combos of meds.  The medicine that really helped him during his last few cycles of chemo are not working with this new cycle. ...?   Oh it is painful to watch your child suffer.  I can only imagine the torture that he is feeling.  Yesterday his jaw was in so much pain from throwing up that he needed a shot of morphine. 
I try to remember the worst nausea that I have ever felt and then times it by 100, because it isn't just some 12 hour bug... this is chemo.  It is constant, (feels like never ending) nausea.  To add to the torture, Riley still needs to take some oral medications ... and keep them down.  Along with his 3 mouthwashes 4x per day. 
So last night we were walking in the hall, doing our laps.  We overheard the nurses talking to each other about some take out they were about to order.  Riley (who hasn't said one word on our walk because he just didn't feel well), looks at me and says,
R-  "What are they ordering??" 
Me- "Delivery from Jason's Deli."
R-  "Umm, I need a BLT."
Me-  "Well, OK!"

The nurse asked if I wanted anything and I declined because I figured I would be eating that sandwich.  There is no way he will get that down.  Maybe he will take a few bites, I thought. ...
Well, my boy ate the whole thing... and kept it down!  Hooray!
It really was a turning point for him! 

So this morning Riley wakes up asking for popcorn.  I thought it was a weird request for 8 AM.  I was on my way down to the clinic to meet Preston for his shot and saw Melissa.  I told her of Riley's request for popcorn and she assured me she would find some.  Without knowing what had happened last night, she said, "Weird thing... kids going through conditioning chemo for bmt's always have a craving for popcorn... that is why I am not surprised by his request!  ---Oh, and bacon too."
I was floored when I heard this and we had a good laugh as I told her about his BLT last night. 

fyi:  Melissa found this bag of popcorn from the picu staff.  Riley had the whole bag finished by the time I returned from the clinic.  He kept it down and then later resumed his upset tummy.  Amazing.

Labs today:

White blood cells: 2.1  (normal 4.5 - 13.5)

Red Blood cells: 11  (normal 13.5 - 17.5)

Platelets: 129   (normal 150 - 425)

ANC:  1428  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)



Day 104 -- (Day -4) to transplant day

Sunday. 

Today was Preston's first neupogen shot.  Our big week begins!

catching up

I intend to add posts from Riley's time at home, but i like to keep things chronological... (I'm weird like that:)   So look back periodically ...  I will do my best to catch up.

Day 103 -- (Day -5) to transplant day

Saturday.  Riley woke up this morning feeling pretty nauseous again.  I think this tough round has started to take its toll.  Today he started Cyclophosphamide.  This tough chemo could cause bladder damage, so he is also on a medication called "mesna", to prevent bladder complications.  The Cyclophosphamide runs once a day for 2 hours, and he gets the mesna 4 times a day.  This will continue for 4 days. 
-----------------------------------

Oh yes, this has been a hard day.  Riley has continued to be sick most of today.  The chemo has accumulated and is now reeking havoc!  Riley is handling it so well though.  I'm so impressed with him!! 

This is Preston's schedule for the coming week.  His shots start tomorrow.  This is it...  Here we go...

Labs today:
White blood cells: 2.2  (normal 4.5 - 13.5)
Red Blood cells: 10.8  (normal 13.5 - 17.5)
Platelets: 110  (normal 150 - 425)
ANC:  1210  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 102 -- (Day -6) to transplant day

Friday.  Today has been a good day. 
Today was the last day of the conditioning chemo, Busulfan. Yeah!  He has made it through incredibly well!!  Dr. Katsanis came by this evening and was so impressed with how great Riley looked!  (He really does look great!!)   His central line is healing.  He just finished with the daily dressings.  Now every three days.  Things are moving along...

I went to the Apothecary Shop to pick up the G-CSF  (Granulocyte - Colony Stimulating Factor) shots for Preston.  The neupogen shots will help him produce extra stem cells to prepare for the transplant.  He will receive shots for 5 days starting on Sunday.  The worker at the Apothecary Shop raised her eyebrows as she looked at my order and asked if I had insurance.  I explained that the shots should all be under the transplant bundle for our insurance, it was already approved.  She looked relieved for me, so of course I had to ask... how much for the 5 shots??  $4000 was her response!!!  WOW!  I am thankful everyday for very good insurance!!  I cannot even imagine the dollar amount attached to our experience.  I am incredibly grateful that with all the worry that we do have, our insurance coverage is not one of those worries!  I know we are blessed.

While I was out, I stopped and picked up a Red box.  I rented a very silly Adam Sandler movie, Jack and Jill.  It was pretty dumb, but mission accomplished... we laughed!  Quite a bit!! 
Toward the end of the night, Riley began to feel nauseous and got pretty sick.  He is such a tough guy.  Really, so brave!  Still taking this -- One Day At A Time!!

Labs today:
White blood cells:  3.1  (normal 4.5 - 13.5)
Red Blood cells:  11.4  (normal 13.5 - 17.5)
Platelets: 114  (normal 150 - 425)
ANC:  1488  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

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)