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)