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"

Trial and Error

We got Brad settled in and he slept for most of Day plus 1. We were instructed to buy a pill box to make life easier for us when it came time to take his drugs.  I sat down quietly and organized it for the week.

Earlier that day the kids helped me unpack Brad's stuff and put things away.  I handed Samantha the insulin and told her one of two things, either "put this insulin bottle in the fridge" or because my brain is mush I could have very well said, "Put this insulin in the freezer".  We will never know.  She put it in the freezer where it WAS NOT SUPPOSE to go.  When I got to that drug on my list I couldn't find it in fridge and when I found it in the freezer, me being the mother of the year, went right to her room and said, "I told you to put this in the fridge, not the freezer!  Sam, I need you kids to focus.  This is all very important stuff and I need your help."  Well, you can imagine, she felt terrible and scared and within a minute I realized what I had done and went to her and told her it was probably me who made the mistake, sorry, love you, etc.  That mistake ended up costing us $215 today because Kaiser would not replace it.  We had to buy it again at our cost, not the copay cost.  That was mistake #1. 

 Mistake #2 was all me.  Once I got Brad's pills all in order I gave them to him and he said "Looks good, honey, you did it" (because he was familiar already with what he was taking at the hospital).  Then I called the charge nurse at PSL to ask her  a few questions I had about the drugs and she reminded me to have Brad take Prilosec alone because it's for abdominal bleeding and it needs to be absorbed by itself with no food or other drugs.  I had put that in my notes too but he had already swallowed all of the pills!  It scared me so bad and Brad said, "it's ok for tonight, don't worry about it" But, I went to the kitchen table and cried.  This was the kind of mistake I have been worrying about.  Human error on my part!  It will take some time for us to learn it all.  

This is Brad this morning as we sit at CBCI while he gets his magnesium drip.  The drugs he takes depletes his magnesium so he needs to replenish it everyday.  We will learn how to do this at home tomorrow when the in home care people come to teach us everything.  You can tell by this photo how terrible he feels.  Most notably this morning were the huge bags under his eyes.  

When we got home he tried to eat some Ramen (soup is the only thing that sounds good to him) and within a minute of eating it he was throwing it up in the kitchen garbage can.  He couldn't even make it to the bathroom.  The realities of cancer.  Sucks.  I will say that he has perked up some today from yesterday.  He talked during the car trip home today whereas yesterday not a peep.  

Day 0 to discharge

Radiation on Thursday morning was horrible.  But we knew it was one more step to his transplant that afternoon.  Day 0 is hospital terminology for the day of Brad's transplant.  From that point we count up to 100 days, and on the 100th day it will be his new birthday with his new cells.  The transplant took two days.  They want to collect from 5-8 million cells from Aaron and he was only able to produce 4 million the first day.  They took those 4 million and transplanted them on the evening of the 20th.  A pretty cool experience to be part of.  Brother saving a brother.  On the 21st Aaron had to do it all over again and he produced 4.3 million cells on this day.  So they took what they needed for Brad, gave him his second transplant and then froze the rest (roughly a million cells).  Instead of a one day endeavor, it was two.  No big deal, it happens, and it does not affect the outcome of the transplant.  I think Aaron felt bad because it just prolonged Brad's stay at the hospital.  I think Brad and I were OK with staying through Saturday as he is not feeling too hot.  Today is Saturday and he threw up pretty bad this morning after his shower.  About half an hour later they discharged him.  Weird.
During his stay at the hospital Brad had to have a blood transfusion (an unknown blood donor) again.  Remember he had one a few weeks ago between chemo treatments.  When he is anemic they give him a blood transfusion to pump up his red blood cells. Also, he is now on insulin for his diabetes.  He was only diagnosed with diabetes in December so we didn't think it was anything to worry about but because he was on steroids for his rash it can blow up his sugar count.  Some people can get "steroid induced diabetes".  One of the many long term effects we may have to face.  So, let's get started with the photos...
This is Thursday mornings radiation treatment.  We had no idea what to expect and it was weirder that we expected.  The radiation lab is in the basement of the hospital so as not to expose anyone to it, I suppose.  From where I was sitting it looked like they took Brad into a chamber.  I could here them getting him situated and I heard the sound of duct tape and I wondered "what the?"  I did not like the feeling on not knowing until Brad had the nurses call me in so I could get some photos.  Here is what I found.  Brad was on a glass throne.  Taped down, weighed down with rice and all smiles.

He looked like he could blast off.

This is the radiation machine that was to the left of him.  I am guessing it sends lasers of radiation at him.  He had a low dose and it knocked him out.  He was probably 10-15 feet from this machine.  The nurses said often they lay patients on the machine too and get really up close to them!!  Yikes, that's some intense radiation.  

This is the entrance to the chamber I mentioned where I heard them taping him up.

They shut the massive door and "radiated" him.  I hated sitting there waiting for him.  Terrible feeling when that light went on.  

Once we finished radiation, we went to the infusion center, where we found Aaron already hooked up and producing cells.  Amazing.  The machine next to him had tubes of his blood going from his arm, wrapping around and connecting to another part of the machine that spined his cells, I think to separate it.  The nurse explained it many times but I am so overloaded with info I've forgotten.  Regardless, it is a fantastic procedure.  Aaron was a sweet angel.  

Aaron's IV was in his arm.  We thought for awhile they were going to have to do a jugular IV but he hydrated his veins well the week before and they found a good vein in his arm.  

We felt lucky to be there for this amazing event as a family...

And Brad even managed to come right after radiation to see his little brother.  I felt so grateful that we had this sweet moment between them because Brad crashed pretty hard after this because of the radiation treatment.  

Sweet

Megan doing what she needed to do for her baby Olivia while at the hospital.  There's no baby under there, just a pump!

Within a half an hour from getting back from radiation and Aaron, Brad hit a wall.  The radiation was that powerful.  

Meanwhile, we rest, read, listen to music, work on our ipad and wait for him to wake up.  Brad managed to pump out a bunch of origami while he was there.

Still sleeping...

Got up because it was time to take vitals and to flush his lines.  Something we have to do at home now.  

Now we are waiting for the cells to get "Counted"  They send them to DTC to a lab and back so it takes several hours.  

More visitors, Brian Judd and...

Lesa Gannon...

Lesa, Jamie and Brian popped in on Aaron.  It was nice because Brad and Aaron were on the same floor just down the hall from each other.

Sometimes we would go downstairs for a snack in the cafeteria.  But what they pass as "lunch" is no where near it, so we drove to Qdoba most the time.

Brad had to have a diabetes nurse show him how to check his sugar levels and give himself insulin.  Another procedure we have to do at home now.  

Girls stayed busy by coloring together.  There is a team of creative volunteers that bring around coloring books, origami, etc. for the patients to pass the time.  It's suppose to sooth them.  Nice.

Joe ate Brad's chocolate shake.

And we let Brad sleep some more while we waited patiently for the cells to come back!

Meg's mom Robyn came down with Olivia so Meg could breast feed her.  Family working together.  Of course, my kids went down to the lobby with Meg to get their Olivia fix. 

Still waiting...

The cells arrived!!!  There are 2 million so we will have to do this all over again tomorrow!  We need 5-8 million.  

Getting Brad hooked up.  

And away we go...a bit nonclimatic, but we sure enjoyed being there to witness it.  

Love this photo...a bond made even stronger today...

Same for their girls...

 Now onto the second day of transplant.  Aaron's back in and pumps his cells out for 5 hours again.  Not sure what this shot in the rear is for but it's funny.  Robbin, the big sister came to visit on this day. 

Aaron finished up and ended up producing 4 million cells.  Yippee!!

While Brad was getting the last of his transplant they were preparing for our discharge the next morning which meant, getting his drugs.  Holy cow..there was 18 prescriptions to fill...

Here is the grocery bag they put them in.  

And here is the total cost!  $245!!  I know, I know, it could be much worse. 

This was Saturday, discharge day,  and when I arrived by myself today, I found my Bradley feeling and looking terrible.    Chemo, radiation and transplant...It is taking it's toll. Shortly after this photo he got in the shower then threw up.  Within a half an hour, they discharged him.  A bit scary taking him home.  

But once we pulled up I could tell he was so happy to be home...

Yes, the sign says "Welcome home, Dab."  Our Samantha has minor dyslexia when it comes to "d's" and "b's".  She gets them backwards and didn't notice until we mentioned it.  We thought it was cute.

And there he stays, comfy, cozy in his own bed.  Been sleeping all day only to get up to use the bathroom.  We have a feeling this fatigue will last for quite awhile. Our home care was booked for the weekend, so I have to drag this poor man back down to the hospital in the morning to get his magnesium IV.  Then on Monday, Wednesdays and Fridays he will go to clinic for check ups.  CBCI will watch him closely to make sure he is progressing like they hope.  We still have a long haul ahead of us, but feel the love of our Father in Heaven around us.