More time will tell

We just got back from Brad's check up, mostly waiting to hear about his bone marrow biopsy he had last week.  Sadly, I have to report that the CLL is growing.  It is now up to 40% in his marrow.  

This is common to see CLL go up and down for awhile.  The CLL was knocked out initially when he was in the hospital before the transplant and he received chemo and radiation.  When we heard there was only 5% CLL in his marrow a month after transplant we were thrilled,but have to remember that a lot of that number comes from the chemo and radiation knocking it out for awhile.  If you think about normal chemo, Brad would normally be getting 5 more months of chemo to really kill it.  Instead we brought in a donor in hopes of killing it altogether and transforming Brad's cancer cells to Aaron's healthy cells.  The plan was for Aaron's cells to get in there and take charge, which can still happen.   She said that it is now a race between the graft (Aaron's cells) and the cancer cells.  Dr Muffly wants to give it more time and see if Aaron's cells will kick in!  In the meantime, she has instructed Brad to drop down on his medication called Tacrolimus (TAC) which prevents graft vs host (GVH) disease.  We will do this so that the graft has a better chance of a fight.  However, Brad has a better chance of GVH.  She said we have several options to go to should the cancer continue to grow.  Ibrutinib is a drug she may start him on which is a drug that has recently been approved and is doing marvelous wonders in putting patients into remission.  Ibrutinib is a 50/50 chance and could help clear out the CLL and then let Aaron's cells come in and clean up!  They froze millions of Aaron's cells so we may have to pull some of those out again!  Needless to say, our drive home was very quiet as we tried to process all of this garbage.  It is emotional and wears you out.  I cannot imagine what Brad is processing in his head.  The prospect of having to do more "procedures" is exhausting.  However, Muffly did ask us to PLEASE PLEASE PLEASE do not feel hopeless and that there is a lot we need to see in the next 3 weeks (another bone marrow biopsy to see if the cancer cells are still growing, and a CT Scan to check for lymph nodes) and a lot of options should we have to move forward.  We will get Brad another priesthood blessing soon and hope that we can gather the family to do that.  

Heavenly Father will take care of Brad and all will be OK.  A long haul still ahead.  

Bone Marrow Biopsy #4

Before the biopsy, looking good, healthy and happy waiting to be admitted at hospital.   

After the biopsy, coming out of sedation and very sleepy.  He was reading his discharge papers and couldn't keep his eyes open.  

Finally enjoying the outdoors

Brads recovery is coming along just as we had hoped.  The last bone marrow biopsy came back with these results. About 87% of Brad's bone marrow is now Aaron's cells.  And greater than 95% of Brad's myeloid (blood) is Aaron!  Wonderful news and it appears that Aaron's cells are geting comfortable and grafting.  Once they are fully grafted then they will hopefully kill off those last remaining cancer cells left.  They can read these results from the bone marrow biopsy because there are identify markers in both Brad and Aaron's DNA that they took pre-transplant.  We are at day+ 50 which means we are half way to Brad's "2nd Birthday" which transplant patients consider day+100. Brad looks good and feels good.  He is getting "out there" a bit more and still very cautious of when and where he goes and who he hangs out with.  I think being extra cautious has paid off as he has had such a healthy recovery so far.  Of course, we believe in the power of prayer and thank everyone for their continued prayers on his behalf.  This photo is from Aurora Resevoir.  His fishing buddy, Mike took him their to at least fish the lake.  It's nothing like fly fishing but will have to do for now!

A bump in the road

Day 35-This week we had a problem with Brad's chest catheter.  Somehow it developed a crack in one of the tubes and was dripping blood!  It happened in the evening at home (Sam noticed it!) so we had to wait until the next day to get it looked at.

Brad happened to have his 3rd bone marrow biopsy scheduled for that day too so we spent a good part of the day at the hospital.  When we checked into CBCI for them to look at his line,  Brad started feeing nauseas and started to dry heave.  They said the chest catheter was going to need to be replaced because it had been exposed to the open air and probably was infected with bacteria.  At that point Brad had 3 CBCI nurses crowding around him, hooking up his IV (no more lines to use!) and getting him an antibiotic drip in place!  He had been fasting all day (for his biopsy) so it's always harder for the RN's to find a good vein when he's dehydrated!    It was a bit of a scare!  They drew blood to send to the lab to see if there is a bacterial infection in his blood.  This lab work needs to grow for 24 hours before they can get a result.

They will also check it in 3 days and 7 days.  The antibiotic they used was called vanconycin and one of the side effects is called "red man syndrome"  which Brad experienced as you can see in this photo.  His face was red and still is a bit today over 24 hours later.

 He handled everything so well and eventually felt better as the antibiotic took effect.  His bone marrow biopsy went well, but was a bit more painful this time than the last.  We are not sure why, but he experienced sharp pain shooting down his legs.  He never complains and is very quiet for his procedures.  A true warrior.  We should get back results from the biopsy soon and will have an idea of how much of Aaron's cells have settled in.
After the procedure our PA, Ryan, put lots of pressure on Brad's back to help with discomfort the next day.

We love our RN's...always looking out for Brad.

He crashed afterwards...effects of the sedation. 

Today, Brad was in the Radiology Department getting his chest catheter line replaced to prevent any infection.  They gave him shots around the line to numb him and they warned him that his heart would flutter and it did.  He felt it!   They did not sedate him and he said it was very uncomfortable and painful.  Basically, they take a wire and push it through the line (which goes into his superior cava vein).  Then they leave the wire in, pull out the old tube and replace it with a new one that runs along the wire.  They have to push and pull and guide the new line along which was what hurt!  He walked out of the procedure like always.  One tough warrior.
His new line.

Moving in the right direction!

More check ups at CBCI and with each one Brad is recovering beautifully!  We are at Day 22.  There is still fatigue and lots of yucky side effects from all the meds he is taking.  No sign of infection or Graft VS. Host Disease.  He will have another bone marrow biospy around Day 30. Keep the prayers coming!!! 

 A balloon bouquet from Brad's wonderful coworkers at Newtown Home Builders.

This is Leslie Younger, our first RN that managed Brad's health as he was participanting in the clinical trial.  We don't see much of her anymore unless we run into her in the halls of CBCI which we did this day! 

Check up after check up after check up

Had to post this photo Megan Acker sent to us because it is precious.  Aunt Megan stopped by to pick up Samantha to hang with her cousins, Josh and Jake.  They know Uncle Brad can get sick if he is exposed to anyone sick.  Although they were not sick they rang the doorbell and stepped back about 10 feet so as not to get too close to him.  

Another check up at CBCI

 This time they cleaned up Brad's chest catheter and removed the dressing.

  Same week, another check up and selfie

 A sweet message delivered to Brad from the Wichita Ackers.  Thanks Kris, Derek and kiddos!

2 visits: In home RN and Papa!

Back to the CBCI clinic visits again.  3 times a week until they tell us differently.  

We were coached by our in home nurse this week on how to hook Brad up to his magnesium drip and also how to flush the lines on his chest catheter.  He will need these procedures done everyday at home. The magnesium drip takes 2 hours to complete.   

 I am Brad's nurse at home and it is my priviledge to take care of him this way.  He makes it fun.  The first time I flushed his lines he jumped and said "Ouch!  Careful not to pull it out!"  Joking, of course.

Another selfie!

 And my beautiful Brad joking with the staff at CBCI during our check up visit today.  He still looks so good.

Tonight Brad said he wanted to go to his folks house to visit with Papa, who has recently been diagnosed with lymphoma, had a recent mini stroke again, and only has a short while left on this earth.  We have been worried that Brad would not be able to see him due to him being extremely nuetropenic (immune system tanked!).  Nanny and Papa showed up at our door and it was a lovely surprise.  Brad and Papa visited and it was sweet.  

I wrote down part of their conversation ...

Brad, "What did the doctor tell you, Dad?"

Papa, "That I am going to pass on.  I don't have to like it."

Brad, "That's good though, Papa, because you will be perfect."

Nanny, "Papa, do you want me to go with you?"  (leave it to Nanny to ask these kind of questions)

Papa, "If you want to"

Brad, "Do you know when you are going to pass on , Dad?"

Papa, "A couple of months"