email update with WONDERFUL News

Hi everyone!  For the last year I have sent out many updates on Brad and his difficult cancer battle and reports on his bone marrow transplant.  Those updates have slowed down quite a bit because there wasn't much to report other than he was improving slowly but surely.  I am happy to report the following news to you all today...month 7 after transplant...

His doctor is dropping down on several of his meds, which is always a good sign that his body is working on it's own.  

His bone marrow biopsy last week had this to report:  He is still at less than 5% of cellularity (cells and marrow) showing cancer.  This has not moved since the last biopsy, which is good!  We want it to stay where it is at or better yet, go down.  But what is really amazing is that Brad had a gene in his cancer cells that was nasty and it was called TP53.  That gene was detected many years ago when he was first diagnosed and doctors have said that Brad had the worst form of CLL because of this gene.  That gene, in this last report, was not detected!!!!  Aaron's marrow is working with Brad's and we are seeing some real miracles.  

Brad's doctor did say that this is a lifetime battle for Brad.  (We realized this the moment he was diagnosed.)  However, we will "roll with it" and make adjustments where needed, be as healthy as we can be as a family and support Brad in all that he does to STAY HEALTHY!!   I believe he will be with us for a very long time thanks to modern medicine, Aaron Acker, and most importantly the POWER OF PRAYER AND THE AMAZING MISSIONARIES WE HAVE IN OUR FAMILY SERVING THE LORD.  THEY ARE BLESSING US,  I HAVE NO DOUBT.   

We love you all and appreciate your prayers and love and support.  We could not of made it this far without you!!!!!!!!!

We continue to pray for blessings to pour out on our family and yours.

Chest catheter OUT!!!

Brad had his chest catheter removed last week and now he is only left with a hole.  They did it with minimal numbing and no sedation.  Brad said it was alot of tugging to get it out.  When Brad asked if he could keep the tube to show his kids, the doctor said they can't because it's a biohazard and has to be disposed of properly!  He had to sit up for 4 hours afterwards to avoid any clotting or bleeding complications.

BACK TO WORK on DAY 144!!

Brad started work on July 11th only going back on a part time schedule (doctor's orders).  What a accomplishment this was.  He made it in 144 days!  Amazing.  I was proud of him so I had to get a photo of him on his "first day back". 

  Later that week he had his 7th bone marrow biopsy and the results looked good!  LESS THAN 5% CLL!!!!  I believe Brad is on the road to a full recovery and we have so many to thank for all the prayers and outpouring of love.  

Flip over!!

 The numbing and the gigantic needle...

 Disclaimers and all that mumbo/jumbo...Sign HERE...

Lots of sedation administered today,  he was very talkative (as usual) then it was sleepy time. 

Lab results leads to ultrasound, ultrasound leads to liver biopsy then a hospital stay

Brad reading over his labs at CBCI.  His liver is in trouble as the liver counts are double what they should be.  So an ultrasound was ordered so the radiologist could get a better look at his liver and what's going on.

 As we walk to ultrasound lab I am always amazed how Brad looks so normal amidst all the crap that is going on in his body. 

 This took about 45 minutes to get all the photos they needed. 

Next thing you know they are admitting Brad because his liver is inflamed and extremely irritated.  Nothing to mess with.  They also ordered a liver biopsy so Brad had to endure yet another procedure.  This time they went through his neck through a vein to the liver and scooped up a sample.  While in the hospital they hooked him up to saline which always makes him feel better and then they began administering a high dose of steroids which will hopefully calm down everything.

 Prepping for liver biopsy...

 This time I stayed at the hospital with Brad.  We had a sleepover together. 

 Here is a email that Brad sent out to everyone the day he was released:

The doctor just left and said that I have some CLL in my Liver which most likely caused Aaron's cells to attack the CLL there but also attacked my Liver while it was at it. So I'll be on a pretty strong dose of steroid for about a month to keep it all calm. I'll also have to increase my immuno suppresants for a while as well. My liver counts have come way down and in about a week should be back to normal. I just hope I can stay out of the hospital for a while. Not fun at all!!

I love you all!!! thanks for the prayers.

Once we got home it was time for Brad to reorganize his meds which can be very frustrating and tedious.

 Meeting with an in home nurse who teaches us how to administer his anti-fungal meds through a gravity pole drip.

This drip is once a day and should only be for another week or so. 

ultrasounds, biopsies and another hospital stay

    BRAD:
I am back in the hospital for hopefully only 24 hrs. Yesterday I came in for my normal appointment and all my numbers looked good but my liver counts were about 1100 points higher than they should have been. 5 days earlier they were in the normal range yesterday they jumped 1100 points. BIG concern. It's one of three things. CLL attacking my liver, which we don't think because my counts are good. infection which they are testing for and will get the results back tomorrow morning or what they are pretty confident it is is GVHD. Aaron's cells are recognizing my liver as being foreign and are attacking it. GVHD is a good thing to a certain point and they can treat it as long as it isn't too severe.  I am getting ready to go in for a liver biopsy around 1:30 where they will stick a camera and wire down a vein in my neck to my liver to cut out a chunk. They will sedate me. The docs will see me first thing in the morning to give me all the results and then I go home unless the results are bad. Which they won't be. They have me on some high powered steroids as well which can wreak havoc on my diabetes. So they really want to keep a close eye on that. Blood sugar gets too high and I am high risk for infection. But don't worry it will all work out. 

LISA: 
It has been a roller coaster ride as each day brings something new.  Last we checked his double bone marrow biopsy came back as showing only 5% CLL!   Wonderful news, yet Brad was still extremely fatigued.  Which is where we are at today with the news of his liver.  Docs say that it is functioning, but irritated and working really hard.  It's important for me to add that I love this man with all my heart.  The strength and courage he has shown through this journey has been amazing and I feel privileged to be a part of his life.  

A fever and a hospital stay

Fever...

 Check up...

Jun 2

First off I want to thank you all for fasting on my behalf yesterday. What a wonderful caring family I have. I've been truly blessed! I was also given an amazing blessing by Bishop Miller who will always be my Bishop. the girls and I talked after and Emily said "he is the BEST Bishop EVER" Sam and Lisa agreed whole heartedly. Rick performed the anointing. To have these men who have always been such a wonderful example to me and my family was such a blessing.

After everyone had left we had a sweet young couple come to pick up the trampoline we had sold them. Lisa apologized that I couldn't help because I was sick. They asked a lot of questions about me and my condition. after they finished taking apart the tramp and loading it they came to the front door and asked me if they could pray for me. I said I would be honored. They put their hands on my shoulders and gave me a beautiful prayer. it doesn't matter that they are not of our faith. They love our Savior and their fellow man.

we had some potential renters over the other day and and found out that the wife was a oncologist at Porter Hospital. so Lisa proceeds to tell them about me and my cancer. They were really sweet. Two days later they sent us an e-mail to tell us that they found a place closer to their mother in Highlands Ranch. But in the e-mail they asked if they could help in any way. staining and sealing the decks, fixing the fence, mowing the lawn.

My heart is full!! The selfless acts of kindness that I have seen is truly humbling. There are so many people out there with good hearts. I think I lost site of that earlier in my life. But I will never forget it. I love the journey I am on for reasons like this. I love each and everyone of you for who you are.

Brad was admitted to hospital last Wednesday for observation after having a fever for over 5 days. His fever finally broke on Wednesday but they wanted to keep him anyway...

Jun 5:

I'll make it short. My Doctor came in this morning and said the CAT scan came back normal (meaning nothing abnormally large) so, no lymph node biopsy for now. So she sent me home. She does want to keep a closer eye on me so we will be going back to three visits a week and next week they want to do another bone marrow biopsy which will be number FIVE. It seems like eventually they would run out of places to drill. Crazy!!

So I'm home and the Spurs are up by 5 at the half. Thanks for the continued prayers!!

Brad Acker

PHOTO TIME: 

This rash appeared on the side of Brad's stomach only for a day or two then went away...

 Hospital stay on oncology floor-same protocol,  minus the mask

 Not a happy camper

 Brad demonstrating the comforts of the guest bed.  3 layers. 

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!