Good news first!

Josh saw the oncologist at Mayo on Friday.  Labs and CT show no sign of recurrence!  He is still in remission! Continuing 3 month lab checks and 6 month imaging checks.

• AFP (tumor marker) increased from November 2023, but is still within normal range.
• BHCG (tumor marker) is within normal range.
• LDH is within normal range.
• CT Abdomen Pelvis with IV Contrast shows:
  • Stable enlarged right common iliac lymph nodes and precaval lymph node.
• CT Chest with IV Contrast shows: 
  • Similar appearing lower lung zone predominant fibrosis with reticulations, ground glass, architectural distortion and traction bronchiolectasis, with both central and peripheral involvement.
  • Similar basilar predominant and dendriform pulmonary ossification.
  • Several unchanged solid non calcified pulmonary micronodules.
  • Stable 8 mm short axis subcarinal lymph node.
  • Similar small left supraclavicular/retroclavicular lymph nodes.
  • Scattered additional thoracic lymph nodes which have not significantly changed.

Bad news:

Labs showed a significant elevation (from his post-cancer baseline) in creatinine.   The oncologist was concerned enough to make sure he returns on Monday for an AKI workup with renal ultrasound and an appointment with nephrology. In short, he has worsening Acute Kidney Failure.  

• Creatinine is high and has markedly increased since November.
• BUN is high and has increased since November.
• EGFR is low and has markedly decreased since November. 

Highlights since last update:

• In January 2023, he saw the cardiologist for moderately severe chest pain, described as different from previous episodes of pericarditis and myocarditis.  It scared him enough to want to go to the ER.
  • My theory is that he was experiencing chest pain due to recently having gone off prednisone again.  He forgot to tell the cardiologist that he had recently ended Prednisone.
• On September 27th, Josh developed a rash on his thighs, spreading down his leg. He also noticed small spots on his hands and a sore throat.  He described the rash as "burning." It started worsening by the hour so he went to urgent care.  Strep test was negative. He was instructed to use antihistamines and cold compresses.
• On September 29th, he already had an appointment scheduled with his PCP.  The rash had progressed to his stomach and arms.  We went through all possibilities and ruled out environmental changes. He was put on prednisone (of which we know he has extreme difficulty tapering off), cetirizine and famotidine. "Large coalescing blanchable macules and wheals. Pruritic. Positive dermatographia." 
• On October 5th, a triage nurse called to check in, after we left a voice message for PCP.  It had then spread to his neck and hands.
• Over the next 2 weeks, the rash cleared about 50%.  After tapering off the prednisone, the rash returned and it was angry, itchy and burning.
• On October 25th, he had a follow up with PCP.  Extreme fatigue and drowsiness, painful itching, hive-looking rash all over, even on his face.  The location changed every day.  He was put back on prednisone, and was on a high dose for just about 3 months, which is why I think he was having chest pains in January, because he had tapered off high dose prednisone.  Josh has significant difficulty with tracking dates and memory retention is poor.  It is not surprising that he forgot to talk about the prednisone when he met with his cardiologist, but it also did not ensure they had all the relevant information to treat him.
• Doctors continued to diagnose the rash as an allergic reaction to an unknown irritant.
• So, a week after Josh first got his rash, I started feeling sick.  And almost immediately, so did Annie and both of my parents.  We all tested positive for COVID and it hit us pretty hard. If you look up "COVID Rash" on the Google, you will see pictures identical to Josh.  I am certain that he had COVID first (along with the rash) and then spread it to all of us.  His body reacts in abnormal ways following cancer.  The rash makes a lot of sense.  I shared all of this with his doc and it was pretty much dismissed.  I'm not a doctor, but I'm going to "unofficially" diagnose what he had for 3 months as a COVID Rash. It's far too coincidental that he also had COVID, zero environmental changes (plus, he never has skin reactions - that's me), and it is identical to what pictures show as the COVID Rash.
• It cleared up in December, after 3 months of pretty significant discomfort and an on-again-off-again relationship with prednisone.
• Non-Josh related, I ended up getting Shingles in December (perfect cocktail of weakened immune system from COVID and high stress).  Do. Not. Get. Shingles. It's so freaking painful. I was using cold showers and ice packs to survive the pain. Strange we both had skin things at the end of the year, but they were entirely different. 
• In sum, we finished the last quarter of 2023 running (crawling) on fumes.  Thank goodness we didn't have to fight typical MN weather.  Nobody over here was healthy enough to shovel or clear snow. (Our household also had 3 major surgeries since November).
• Josh has also had several appointments with his psychiatrist who is concerned with unsafe situations resulting from memory and tracking issues, lightheadedness and other symptoms.  He is changing meds and is supposed to be starting an ADHD Group tomorrow, but he will be at Mayo addressing the kidney failure.  Which I just realized while typing this update.  So, that needs to be cancelled.  I was very impressed with his psychiatrist.  He made sure his nurse contacted me after Josh's appointment to give me all the details, to assist with follow through.  His attentiveness and concern was clearly felt through his office's communication.  

Sending all the positive thoughts Josh's way for his kidney testing tomorrow ❤️

Big "Thank You" to Heather for making sure Annie gets picked up from school tomorrow!