Summer and fall of 2016

The days roll into months as Brad still battles the GVHD.  He feels terrible 95% of the time.  Last check up with Tara Gregory she said that the drugs he is on have a lot to do with the way he feels.  She said "they make you feel like shit".  They have been weening him of certain drugs for sometime now and it has been a challenge.  His body is just not strong enough to fight back yet and take over where Aaron's cells are dominating. It's not been fun.  Last night he told me that he's lost hope with Heavenly father, Jesus Christ, & Papa. He's looking for any help from the other side and not feeling it it. It's effecting everything, both family, work, church, everything.  We are at the point of seeking help through Eastern medicine, specifically acupuncture. And I am seeking some help mentally dealing with an ailing husband.  I am hoping to hook up with a support group soon.  Prayers prayers prayers.

Kids make Brad happy-they are like medicine!  

This was a LLS event, black tie event I should add, that Brad and I were underdressed for.  Brad wanted to surprise me so he didn't give me details and he didn't know that "cocktail attire" meant to dress up!! I was literally in rags.  I gave him such a hard time this night.  I regret being such a brat about it.  But we had a good time, nonetheless.

 Edema and GVHD

 Tired guy at one of his CBCI checkups.  He sometime doesn't sleep well. 

 Terrible scabbing, peeling rash from GVHD

Yikes

Looking back I thought that Brad's GVHD was "under control somewhat" but boy was I wrong.  He actually looked good in those photos.  Now, his GVHD has flared up so bad that he is limited to what he can do.  Simple things like putting on his socks require my help.  They have him on 90 MG of Steroids with the plan to taper down to 10 MG each week.  Because the pain is so bad, they also prescribed Morphine so he is drugged up more than ever.  This was his GVHD about month ago...

It has since increased in redness and spread

We finally put in a request for a handicap tag since Brad is having so much trouble walking.  

October-December 2015

From October to December Brad did OK.  He certainly sleeps ore than usual, I think because his body is working so hard at trying to acclimate to Aaron's new cells.  GVHD is under control somewhat.

Check up and I got to go this time so I took our traditional waiting room selfie. 

 Aaron took this one.  Brad spiked another fever and so off to the ER he went in a snow storm.  Grateful for family that are here to help.  Turns out they sent him home.  Precautionary as with anything pertaining to Brad's health!!

Another trip to the ER and Light the Night 2015

We will start with Brad's trip to the ER because he had a fever for a few days.  We called CBCI and they told him to go to his PCP.  Well, you can imagine what happened next.  They said because of his past history of pneumonia, that he needs to go to ER. 

The good news is that he broke his fever while he was there!   Which means his body if fighting off viruses!  Yippee!!! We made it home by 11:30 pm.  

Light the Night walk 2015.  A wonderful turnout...

 The donor (and family) made it this year too!! :)

Photopherises? Try spelling that, let alone figure out what it is!

Brad is suffering from GVHD (Graph vs. Host Disease).  We were warned of this side effect of a transplant since the beginning and, of course, we were hoping he would avoid it.  Regardless, he has suffered for awhile and he has once again stepped up and endured through it.  He has had an immense   challenge with his skin which seems to be the organ that is being hit the hardest.  His skin itches all day every day.  And it becomes very tight and uncomfortable when it is not hydrated with lotion.  So, he continually saturates it with lotions (and we tried many before we found one that worked best!) He has mouth sores too and eating spicy foods is painful!!  This is Brad we are talking about!  Sometimes salt even aggravates it.  Doctor subscribed a mouthwash that he uses.  Doesn't do much but he keeps using it.  That is basically the only thing we can do on our end to help.  His doctors have ordered a 5-6 month photopherises treatment.  This treatment entails weekly visit's to PSL where he has to sit for several hours and have his blood pulled out (he had to get another chest port put in).  Once his blood is pulled out, it is spun and divided.  Then parts of it are exposed to UV rays along with a medicine that goes along with the process.  It is painless but it is time consuming.  So far, we have not seen a ton of improvement. And unfortunately his diabetes got worse which was a challenge in itself.  We think he has leveled out that problem with good eating habits.  Good job, Bradley.  So, that is it in a nut shell.  He is still dealing with all kinds of garbage.  Yet, we still have to have faith that he will come out stronger and better!!   And he will!!

Test Results!!

I just arrived at the hospital and here is some good news.  They found something from the bronchoscopy results. A pnemonia bug called pneumocystis pnemonia which is uncommon to those of us who are not immune compromised, but for someone like Brad whose immune system is so weak it is.  So, they have a drug that he has been on before called Bactrim that he will take 3 times a day and hopefully that will do the trick. His breathing is restricted because of this so he gets winded just getting up to use the bathroom.  He's feeling pretty crummy and had a rough nights sleep. He's doing a lot of reflecting on family and the love he has for you (and friends) 💝 He's hoping he will be ok to attend Emily's graduation on Thursday but I'm thinking not. 😒 

Day 5 at "Hotel St. Joe's"

On Tuesday of this week Brad went in for his second Rituxan treatment to help with his graft versus host disease. While he was there he had a fever. They finish the drip and he went home. However, the next day he had another fever and felt terrible. I should note that  he has been fighting a virus for months now and hasn't looked so good.  Bags under his eyes and  extremely fatigued. He would go to work and come home and sleep.  We've been attributing everything to graft versus host disease because he does have it and it's mostly been manifesting itself through a rash that is extremely itchy and burning. Moving on Wednesday morning he woke up and didn't feel right. He had a fever of 102.4. We called CBCI and they instructed us to get Brad to the ER. We went to PSL where they  admitted him to the ER and started doing some tests. Chest x-ray and CAT scan came back showing pan sinusitis (where all eight cavities are infected), water in his ears, and signs of pneumonia coming on in his lungs.  Brad's head was killing him. And he was quiet and sleepy most the time in the ER. Once we got the instructions from his doctor Tara Gregory, he was put in an ambulance and sent across the street to Saint Joe's where  our Kaiser insurance is accepted. So we've been here since Wednesday morning it's now Saturday. He's been given a broad spectrum of antibiotics to cover his sinus infection and the pneumonia. Yesterday he woke up with a fever of 104. Today he woke up with a fever of 103.7. It seems to be a pattern that in the morning he runs a very high fever which is scary. He has seen a ton of doctors on the pulmonary side, infectious disease side, oncology, etc. etc.  right now he is getting prepped for a bronchoscopy.  They will put a tube down his throat,  flush in some saline and then suck it out so they can get a sample that can be sent to the labs to determine what exactly is going on. It can  be a very uncomfortable procedure for Brad afterwards because last time he had this done at University Hospital they sent him to the ICU because he spiked a fever.  The doctors know that he had a reaction last time so they  are going to take it very easy with him. Brad's mom insisted he have another blessing at the hospital last night so Ken Kearns and Aaron came over and gave both Brad and I am blessing. We know that God is mindful of us. We know that he has plans for us. And we were assured that Heavenly Father has plans for us still. Brad has been a warrior once again, and he never ceases to amaze me at the control and patience and quietness that he exudes.  I love this man.
Here's some photos of the journey...
He has been sleeping a lot, which was probably an indication that he was fighting something.

This is the day he went in for his check up to see why he was feeling so crummy.  They suggested a Rituxan drip .  Little did we know his body was developing some major infections.

Day of 1st Rituxan drip. 

Day of 2nd Rituxan drip and this is when the fever was detected. 

ER at PSL.  You can tell he is hurting.

This sweet lady is Georgia and we remembered her from our last stay at PSL.  She transports patients all over the maze we call PSL.  She is taking Brad to get his CAT scan.

Look at the sweat beads on his head.  My poor baby.

Here we go again with the sterile environment...

And off he goes to the ambulance from ER to oncology floor at St. Joseph's.

Settled in and he will be here for 10 more days. Here are some notes from my phone regarding this hospital stay...Fungus typically seen in HIV population.  Bactrim quite effective. 3 week treatment. Rash, can burn easily photo sensitive.  As long as he's in high dose steroids he will be on prophylactic drug to prevent this pnemonia from coming back. Steroids cool off immune system while Bactrim works to fight pnemonia. Go home on anti bacterial antibiotics for sinus and ears. Brad has been hallucinating when he sleep sand told me about a few of the visions... a samari warrior, Nanny and Linda Lovejoy hanging out in doorway, old men sitting in park bench and one gives him a smile.  And the scariest one of all is there were ladies walking towards him with blackened eyes( some are scarey!) 102.7 fever this am.  Hearing better out of ear, pressure in sinus going down slowly. 

Wow, fancy plate presentaion.  

More and more drugs.  Thank goodness Brad has an iron stomach.