Sept Oct and Nov and still not well

Brad has had a sinus infection for months now. He has been prescribed 4 different meds that are not doing the trick.  After lab work a few weeks ago we found out that the leukemia is back.  The doctors said it "broke through" which I don't quite understand because he is 100% Brad DNA.  He has been to the docs for the sinus infection and also had to get a PET scan to look at his sinuses.  They are ordering a CT scan this week to look closer and already confirmed that he has a defeated septum, which will inevitably need surgery to clear out.  As far as treatment for the cancer, Brad has decided to wait a bit to see if his WBC count goes down.  It was at 134 and needs to be between 5-11.  They are planning on doing a treatment of Rituximab (rat DNA chemo) and also a drug called Vanetaclax for the cancer in hopes to put it in remission.  We are praying for a miracle so that he will not have to endure more treatments and all the garbage that goes along with that! I am so proud of him and his courage and patience.  I honestly do not know how he is doing it.  I have included photos of him with the kids in our life (daycare and family) because they provide him with a great source of light and happiness!

 Heading to the PET lab...yes indeed he is a survivor!

Home and finally cleared to remove port!!

Brad had to come home with oxygen and also a port that we had to administer meds into for a few weeks.  

                                                         He sleeps a ton.  Poor guy.

 This was our follow up appointment with infectious disease.  The doctor informed us that after the biopsy from his hospital stay he has what is called interstitial lung disease.  Basically, his lungs are damaged and this disease normally affect people with Lupus or Rheumatoid Arthritis.    But, hey, we can handle that...just have to keep moving forward with FAITH!!

                                           Take that port out!!!! YES!!! No more meds!! This photo looks much worse than it was. Ha Ha.  Brad is always the jokester (flirt) with the nurses, young and old.  

2 hospital stays in May

Fevers for a few days brought us to the doctors, where they determined that he should go in to hospital.  He was admitted to St. Joe's Mother's Day weekend. 

               St. Joe's ER department.  We waited for 3 hours for a room to be available.

 We had a sleep over together the first night.  After many tests, pnemonia...

 Sunday visit

 Mother's Day Skyping with Emily on mission, Dad at hospital and me and Sam at home.

 Released from hospital and back at Lone Tree Infusion Center for treatment for immune deficiency IgGB treatment.

Uh oh...not feeling good again...and after calling in the Kaiser after hours RN, she said go to Skybridge ER, which we did.   It's still pneumonia. 

 Admitted again on Memorial Day weekend...ended up being pneumonia and a rhino virus and entero virus.  Both viruses he probably picked up because his immune system is down.

 Another Sunday visit,  this time with family galore!!  We got a chuckle out of this one of the ladies...not a good photo of any of us!  So we tried again!!

Better!!

 The boys and Sam came with me to visit and we went for a walk to get drinks.  This vending machine took 1/2 hour to dispense 4 drinks!!  It was some comic relief.

In home care...oxygen from Apria and meds (a gravity drip and a med pump) all administered by me and Sam after we were "trained" 

Appointments, Jakafi and the waiting game

Brad was put on a accelerated new drug called Jakafi that is doing wonders for GVHD treatment.  It is actually a chemo drug for certain melanoma's (I think) and we are patiently waiting for it to "kick in". We have been told it can take a year.  In the meantime, he is feeling miserable and also got sinusitis (I think this might be his 3rd time he's gotten this.  

Check up with Tara Gregory at CBCI

 It's difficult (and painful as you can see) for RN's to get a vein because of his skin condition.

                                                 My poor baby sleeps a ton.  Healing!!!

It's not hard to notice when Brad is not feeling well.  His body language says it all.

We decided to go shop at a medical store and get him some good compression socks. and an aperture to help him put on his socks.  And we also got him his own fitted cane instead of him having to use Papa's. 

Disability

The inevitable happen and Brad was placed on disability.  He is not getting around as easily as he used to.  His skin is so tight and dry that he can hardly bend his legs, which makes it real hard to run a construction project.  Lots of discoloration, circulation and inflammation problems.  So, as hard as it was to hear, we believe it may be a blessing in disguise so Brad can rest and heal.  His plans are to maybe join up with Sean Bookout, his old colleague, and work for him eventually.  We have decided to return to Nanny's chiropractor, Braddock, where Brad will get acupuncture every other week.  Perhaps Eastern medicine will help him feel better, is our hope.  Prayers, prayers, prayers!!