Why Is This Happening?

The last few weeks have been some of the toughest weeks we’ve had.  

Gallbladder Surgery – Monday, October 13th

Instead of starting Round 2 of his ReIntensification, John had surgery to remove his gallbladder (it was too problematic to continue chemotherapy with his irritated gallbladder).  All seemed to go well … the surgeon came out of the OR and told us that surgery went “as planned”.  The gallbladder was removed via laparoscopic surgery – through his belly button.  However, it was so enlarged (angry and full of stones) that they needed to puncture it in order to effectively grab and remove it.  Well, I guess, “as planned” means one thing to surgeons and another thing to a patient family.  As I sat in the recovery room with John, information regarding the surgery started to unfold.  It turns out John had some “bleeding” – as they peeled his very irritated looking liver from the gallbladder it began “oozing”.  The surgeon also noticed he had a significant amount of fluid accumulation in his abdomen and around his lungs, ascites (remember this word – your going to see a lot of it in this post).  We all posed the question, “why is this happening?”  Since we had no answer to that question, they chose to be cautious, moving him to the ICU for observation.  Just that morning I passed the ICU and told Bella that I never wanted to walk through the doors of the ICU – sure enough – the Hagen’s were rolling into the ICU.  John spent two days there.  He was stable, and showed no signs of internal bleeding.   However, they never could give us a definitive reason for the ascites but everyone seemed to believe it would resolve itself.  Our ICU experience was difficult and we were relieved to be discharged and able to continue his healing process back at the Target House.  While the recovery was slow and painful, John seemed to be improving. 

Visit from Mr. Fred – Friday, October 17th

While John was being treated at Levine (in Charlotte) we were blessed to meet and become friends with a volunteer, Mr. Fred.  He was one of the only people in the clinic who was genuinely interested in getting to know our family and John’s story.  Wonderful Mr. Fred, came to see us at St. Jude!  Unfortunately, John was too sick for the visit but I enjoyed a lovely lunch with him at the Kay Kafe and gave him a tour of The Jude (I think he was impressed).  Since John’s relapse Mr. Fred is the ONLY person from our local hospital who has checked in on John.  You can imagine how that makes us feel.    

All hell broke loose - Saturday, October 18th

John was feeling good, he had a healthy appetite for the first time in weeks (he lost over 10 pounds at this point) he enjoyed lunch from Whole Foods then, he snuggled into bed for a much-needed afternoon nap.  When he woke, it was a shit storm (figuratively and literally).  Rich and I heard him crying out.  When we entered his room he was suffering from uncontrollable vomiting, diarrhea and pain.  We called St. Jude and we took John over the Medicine Room (an outpatient clinic at St Jude open 27/7/365).  John was treated with anti-nausea and pain medication.  No one had a clear answer as to “why is this happening” – was it food poisoning, acute gastritis, a bile leak from his gallbladder surgery, the ascites, his liver, an infection ….   After a few hours we thought he was stable enough to take back to The Target House.  Boy, were we wrong!  Vomiting, diarrhea and pain came back with a vengeance.  After checking back into the Medicine Room again (it’s the middle of the night now), it was decided John needed to be transferred to the Inpatient Floor to control his symptoms.  Even up on the floor nothing they were throwing at him seemed to work.  We exhausted our usual arsenal of anti-nausea meds and he was blowing through pain medication.  He was so sick!  John was literally begging us to make it stop and was crying out for help.  He was beaten-down and humiliated.  Rich & I were heartbroken and panicked.  Bella was scared.  It was a soul-crushing day. 

Enough was enough - Sunday, October 19th

Early Sunday morning Rich emailed Dr. Pui and, as usual, he came into the hospital to oversee John’s care.  He called in the surgical team (in case they determined he was leaking bile fluid) ordered cultures, an ultrasound, CT, blood chemistries etc.  All hands were on deck (this ONLY happens at The Jude on a Sunday!).  It took most of the day to get John stable.  They pushed in antibiotics, antifungals, and every known anti-nausea drug they had.  John was finally hooked up to a PCA, which delivered a constant stream of Dilaudid; it also allowed him to push a button when he needed an extra boost of pain medication (praise God).  At the end of the day, we were all still asking ourselves “why is this happening?”  Exhausted and scared we all slept at the hospital that night: Bella in the adjoined parent room and Rich & I side by side on a cot next to John’s hospital bed.  I could feel Rich’s heart racing and I could see fear in his eyes.  I couldn’t control my anxiety and throughout the night tears just streamed down my face.    

Dropping Counts and rising weight - Monday, October 20th

For no reason John’s counts were plummeting (white blood cells, red blood cells and platelets).  We were still on a quest for answers regarding John’s ascites, vomiting, diarrhea and now, low counts.  The ascites, fluid in his abdomen was increasing rapidly – his weight was up over 10 pounds!  Frustrated, we still didn’t know “why is this happening?”  It wasn’t for lack of effort.  John’s room was constantly filled with doctors most of the day.  Results from the cultures were coming back negative for bacteria/fungus.  Scans didn’t give us any answers they just verified what we already knew – he had fluid accumulating.  Regardless of the cause we continued to treat the symptoms.      

Typhlitis – Tuesday, October 21st

After our daily visit with ultrasound, the radiologist noted that John had developed Typhlitis, inflammation of a section of his large intestine.  No shit Sherlock – he’s had diarrhea for days!  At this point his list of ailments just kept on growing. 

Improvement – Friday, October 24th

After nearly a week, John finally turned the corner.  His Typhlits was resolved and with the help of very strong diuretics his ascites was slowly improving.  We were discharged and headed back to the Target House.

Much Needed Rest – Saturday and Sunday October 25th, 26th 

After a very long week we all needed to recoup before resuming ReIntensification.  I spent the weekend with my girlfriends from CLT, they came in for a quick visit – It was beyond wonderful to get a hug and talk to face-to-face.  It’s just what I needed to recharge.  Rich caught up on work and sleep.  Bella caught on schoolwork.  And John was able to rest with no pain, vomiting or diarrhea. 

Getting back to fighting Cancer? – Monday, October 27th

We showed up bright and early for our clinic appointment, ready to get back into the fight and resume ReIntensification.  We just had one quick stop, a visit with our friends over in ultrasound.  We were a bit irritated by the request since John was just cleared of Typhlitis a few days earlier but we understood the need to be cautious given John’s history.  To my surprise a VERY swollen colon and a large re-accumulation of fluids in John’s abdomen and around his lungs appeared on the ultrasound screen.  I’m pretty sure my eyes almost popped out of my head.  Feeling defeated, I headed back to the clinic to share the news with Martha & Dr. Pui.  Gauging by their reactions, I’m pretty sure they were shocked too.  Martha promised me from the very beginning, she would tell me when she was “concerned”.  This was one of those times.  Martha pulled me aside and said it was time to get a biopsy of the fluid – she was not only concerned about infection but also about malignancy in the fluid.  I was breathless – fear literally took my breath away.  So, we headed back up to the 2nd floor – inpatient – and began treatment for the Typhlitis and Dr. Pui made plans for the needle biopsy.  The same question arose, again, “why is this happening?”

Ultrasound Guided Needle Aspiration of Ascites – Tuesday, October 28th

The procedure went well.  Initially the radiologist intended on only aspirating a sample of the fluid but once he saw the amount of fluid in the abdomen he decided to drain as much as he could 1.3 liters!  The fluid was sent off for cultures – for everything imaginable.  Throughout the day Dr. Pui would barge through the door and deliver news (it scared me to death every time the door flung open) the results: negative for malignancy, bacteria/fungus and bile.  There are lots of theories surrounding John’s ascites but still no definitive answer – everyone at the moment is leaning toward a virus.  We just continue to treat it with a combination of albumin and lasix (diuretic).  

His MRD is what? - Wednesday, October 29th

Still treating John’s very painful bout Typhlitis and ascites with no sign of a resolution.  The elephant in the room, John’s untreated Leukemia, is impossible to overlook.  Since John hasn’t had chemotherapy since September 21st, over a month ago, Dr. Pui had ordered another MRD test, which was drawn this past Monday, October 27th. 

MRD (minimal residual disease) recap:

MRD at the time of relapse = 0.06%

MRD his first day of ReIntensification = 0.074%

MRD after his first round of ReInsensification = 0.012%

MRD at the onset of abdominal issues, October 20th = 0.023%

The MRD test result delivered by Dr. Pui today = 0.002%!  Anything under 0.01% is considered MRD NEGATIVE 0.00%.  So, yes, technically John is MRD NEGATIVE.  Why is this happening?  It seems John’s immune system is fighting off a possible virus along with his residual Leukemia.  I think it’s a combination of residual chemotherapy, an immune response and God.     

We will repeat the MRD test this coming Monday.  IF the test comes back lower than 0.01% we will start the pre-transplant process.  

Please pray for John’s body to heal, for his immune system to continue to kill his Leukemia and for answers as to, why is this happening

Love, Kathy