Day 114 -- (Day +6)

Wednesday. 
This mornings line up.  Pills that cannot be switched to IV, but have a liquid form. (easier to go down:) and mouthwashes.
From left to right:  Ursodiol (liver), Amlodipine (blood pressure medicine), Tylenol (for his fever this morning),  Sodium Bicarbonate mouthwash,  saline mouthwash,  Chlorhexidine mouthwash.

The IV medications on his massive IV pole right now...

Cyclosporine (anti rejection medicine)

Methotrexate chemo (given on day +1, +3, +6 and +11 to suppress his immune system to allow the new cells to take over)

Voriconazole  (anti fungal)

Acyclovir  (antiviral)

vancomycin  (antibiotic)

cefepime  (antibiotic)

TPN  (IV nutrition)

Morphine  (pain)

Labs today:

White blood cells: .1   (normal 4.5 - 13.5)

Red Blood cells:  8.8   (normal 13.5 - 17.5)

Platelets:  41  (normal 150 - 425)

ANC:   0   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 113 -- (Day +5)

Tuesday.  This is the long cold hallway to get to the cafeteria in the main UMC hospital.  In the day this hallway is full of doctors, nurses, patients and visitors busily going about their day.   But at night, it is a very different place!  EMPTY.  Almost spooky.  Lately I have been busy around dinner time and Riley isn't eating anyway, so about 10pm I realize... "I'm hungry".  The cafeteria makes a mean breakfast burrito and they start serving breakfast items after 9 at night.  Tonight walking this quiet hallway, I realized again what a weird existence we are living in. 

Labs today:  
White blood cells:  < .1   (cannot be measured)  (normal 4.5 - 13.5)
Red Blood cells: 9.6  (normal 13.5 - 17.5)
Platelets:  31 (normal 150 - 425)   (1 unit transfused)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

*fevers today

Day 112 -- (Day +4)

Monday.   Warning... This photo is not for the faint of heart...

This evening Riley and I were watching "24".  (Ooo, it's getting good... end of season 4!)   He all of a sudden reached for his "bucket" and started to heave violently.  Out came some mucus and then ...plop.  A huge chunk of... ? 

Just this morning the doctor warned Riley that he would be sloughing off tissue and it would be coming out at some point.  Thankfully we had this warning because if not, this would have freaked us out.  Even with the warning, it was pretty disturbing.  We called for the nurse and as she looked, she just smiled and said, "yes, this will continue to happen.  Looks like maybe part of your throat or esophagus."

 Riley handled it extremely well.  We took some pictures, called Vince and discussed this sloughing process with several nurses (as many of them heard the excitement of our room).  Amy, our nurse asked if Riley wanted to keep it.  He agreed and she put it in a sterile container with some saline. 

I know... GROSS.  -- But this is where we are right now--

It measured about 4 inches in length and you can see the hollow, tube like center. 

Riley, you hang in there!! 

The conditioning chemo that he had before transplant is causing some rough side effects.  We are assured that as soon as his new cells engraft and start to develop, that his insides will heal.  And that the healing process, once it begins, will be quick.  

 --Counting on it!!!

Labs today:
White blood cells: .1  (normal 4.5 - 13.5)
Red Blood cells: 9.6 (normal 13.5 - 17.5)
Platelets: 46  (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 111 -- (Day +3)

Sunday.  My perspective today.  ...   where what really matters in life is very apparent.

Riley's IV pole has grown even larger.  It got a new "brain" today on the back side with many new channels for adding on medicine. 

Riley woke up moaning this morning.  The sores are getting worse and he spiked a fever this morning.   They took a blood culture and got him started on 2 heavy hitting antibiotics.  They gave him a dose of morphine for the pain and encouraged him to switch to a PCA (patient controlled analgesia).  This would allow him to control the morphine when he is in pain.  It will administer 1.5 mg per hour and if he needs more, he can push the button and it will give him a boost more.

At first he was opposed, but as the morphine wore off and his pain continued, he agreed. 

So today was the day he became an "octopus" as Jacquelyn our nurse put it.  Many tubes, and lines. 

Labs today:

White blood cells:  .2  (normal 4.5 - 13.5)

Red Blood cells: 10.3  (normal 13.5 - 17.5)

Platelets: 76  (normal 150 - 425)

ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

 

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