Thursday, May 19, 2016

Catchin' up - or "PCP - yeah, you know me!"

So, an update.

You know, I don't quite know where to start - or what exactly to say/share because "our story" continues to unfold - but, I should at least explain all the things that happened in April with Dan.

Sometime this 'spring' (I think in semesters, so spring starts in January) late February? - Dan got the results from a spinal tap and it came back clean. This means that Dan is "cancer-free." There are no more abnormal T-cells in his blood.

His weekly chemo that he was receiving was for the HLH - hemolymphiophagocytisis (or something like that). The HLH was the disorder that our doctor diagnosed him with in early January. When Dan's lymph node was removed July 2015, the doctors thought either Dan had lymphoma or HLH. Part of his treatment for HLH, in addition to the weekly chemo for 8 weeks, was to be on a steriod. In January, he was taking (I believe) 4 steroids each day for 2 weeks, and then that number was weaned by 1 pill, every 2 weeks.

In February, we met with a team in Pediatric Hematology/Oncology - because HLH mostly affects children (as a genetic disorder). They ran several tests to determine the nature of Dan's HLH. Dan is one of the oldest cases of HLH they've seen. Usually someone who develops HLH later in life has an underlying immune disorder which leads to the body's immune system "flipping" and turning on itself. The "good news" was that Dan does NOT have an underlying immune disorder. So, the only cause the team could identify would be chronic, active Epstein-Barr virus.

In early March, Dan's weekly chemo treatments ended and he started receiving chemo every other week. At that time, our doctor had wanted to cut Dan off of the steroid, but his fevers continued. So, she had him just stay on 1/day. The risk of being on a steroid 'long-term' is the development of pneumocystine pneumonia (PCP). To prevent this, our doctor prescribed Dan a monthly treatment of some drug meant to prevent the development of PCP, which he received with his chemo.

His last chemo & PCP-prevention treatment was March 25 (Good Friday). On Easter Sunday, he had a slight fever - but we didn't think much of it - and chalked it up to an active Saturday + chemo (the day we celebrated Easter with the family). That week was a very active week for us. Thursday and Friday marked the start of the Michigan Beef Expo, which is held in the MSU Pavilion. Dan spent several hours there both days. Friday, he spent the day mostly in the arena for the livestock judging contest (which has several inches of dirt).

Saturday, he had a slight fever. Sunday, a fever. Monday, a fever. He had a cough (not productive). On Monday, he walked up the stairs and was out of breath. On Tuesday when I got home from work, he mentioned he was having trouble catching his breath. But, he didn't want me to call the doctor. So, I didn't. [things I would do differently]

Tuesday night, he couldn't sleep because he was coughing and just couldn't catch his breath. Wednesday morning, I woke up to him sitting in a living room chair saying, "I want to go to the ER." Ok! We called UM, and the doctor there was concerned about Dan's ability to breathe and did not want him making the trip to Ann Arbor - so we went to Sparrow.

He was immediately given oxygen and ordered to be admitted (which finally happened 10 hours later). They started treating him for pneumonia (but not PCP). I was in contact with our doctor (McCoy) at UM; she was immediately concerned it was PCP. I said something to the ER doctor about being treated for PCP - and was blown off. His response to me was something like, "We'll start treating him for pneumonia and maybe on Friday, we'll test for PCP."
[yep, happened to be prophetic]

Thursday-day, Dan had a good day. He seemed to be responding. He didn't sleep well Wednesday night because he had a roommate (also named Dan, also had pneumonia). Dan gave me his blessing to be at work. That evening as I was driving to the hospital (which is about 10 minutes from campus), a wave of fear just spread over me. I knew that something was wrong - and I was scared.

I got there and Dan hadn't been able to catch his breath for 45 minutes. He told the nurse, but she had done nothing about it. I got the nurse to come back and she called the doctor who ordered more steroids to try to get Dan to relax. By the time the night shift nurse came (about 2 hrs after my 'fear feeling'), Dan's heartbeat was erratic.

The next few hours were a cluster of activity. More oxygen, different masks, pulse taking, EKG tests (or something), drugs to put his heart back in rhythm. Prayers. Lots of prayers. When I finally left the hospital, I felt like things were stable, but I didn't really know what was going on. I was scared, though. That drive home was a prayer, pleading for Dan's life.

When I got to the hospital that morning, Dan's heart was style out of rhythm because his breathing was still erratic. That morning, an infectious disease doctor came in (a first) to get Dan's history. [Now, on Monday of that week, we visited a naturopath who said that Dan had some time of fungal infection.] So, I asked him, "If Dan has a fungal pneumonia, is the medication that he is on treating that?"

"Oh, no."
"Well, our doctor at UM is very concerned that Dan has PCP." (I also learned that morning that no one from Sparrow had called Dr. McCoy, despite of the fact that I'd given her number to multiple doctors).
"Oh, well, PCP is a fungal pneumonia - and what he is on will not touch a fungal pneumonia. I will change his medicine." [I had no idea that PCP was a fungal pneumonia until this moment]

After his visit, I finally felt like we had someone in our corner. Finally, God was sending us an advocate (besides Mary and St. Raphael and God the Holy Spirit). Dan seemed more stable as the morning went on - and the plan was to switch him to a different mask for a couple hours while he napped (after he ate lunch).

So, I was going to go to the office during nap time and grab some things Dan wanted. I don't think I was at the office 15 minutes before Dan's mom called to say that they were going to move Dan to the Critical Care Unit (also known as ICU). Moving him to the mask caused his breathing to become extremely erratic. The nurse (who was phenomenal) had said earlier that if Dan got worse in any way, they would move him to CCU immediately to prevent the situation from becoming more critical.

I called my mom to let her know. This was the first time since Dan's entrance to the hospital that she cried on the phone with me. I don't know how she does it, but she seems so stoic emotionally when we talk - which lets me feel okay to "let it go"...but this time, she wasn't - and it helped me grasp the seriousness. I then called my dad who was on his way to Michigan to be with me; for the first time (since the hospital visit), he prayed with me on the phone. He wanted to make sure that I was okay to drive myself to the hospital. At the moment, I was.

...and then, I wasn't. I pulled over in a parking lot and started to sob. I cried and cried and pleaded with God to save Dan's life; to heal him; to right this situation. I felt so weak, scared. And, I started to sing. A wave of strength and calm enveloped me; the Holy Spirit was here.

I drove on. A block from the hospital, Dan's mom called to let me know that they wanted to put the ventilator in - but they weren't going to until I arrived. She mentioned something about the tube could be in anywhere from two days to two months.

I got to Dan's room - and a couple nurses were milling around, prepping Dan. His mom had mentioned that Dan wanted to talk to me - but he was in no shape to talk. I got to his side and prayed the Memorare nine times (just like Blessed Mother Teresa says), asked God to send St. Raphael, and a guided 'meditation' of breathing in the healing of the Holy Spirit. Again, I started to sing. The anthem of our week: "Holy Spirit, you are welcome here; come flood this place and fill the atmosphere. Your glory, God, is what our heart longs for, to be overcome by Your presence, Lord."

I cannot describe to you the tangible presence of PEACE that I felt. I knew that we would survive. I knew that in God's time, that tube would come out. I knew that whatever procedures were necessary, God had this. He would allow whatever was necessary - and what wasn't, wouldn't happen.

The plan was to insert the ventilator tube and also give Dan an arterial IV. The arterial IV is the best way to measure blood oxygen. The artery is accessed through the wrist; it's extremely painful to test - so this would make it easier. There was a chance that Dan's heart would go back into rhythm once the ventilator was in; if it did not, then they were going to do a procedure on Saturday where they would have to shock it back into rhythm.

The procedure went well. ...except that Dan woke up during it. His tube was already in, but he remembers waking up and not being able to move and wanting to get the tube out. He did spike a fever after this. I remembered later that the same thing happened when Dan had his I wonder if he slightly allergic to anesthesia?

Through it all, peace never left me. When we visited him after the procedure, he looked like the corpus. (for you non-Catholics, that's the body of Christ on the cross) He had been stripped down because of the fever, but covered with a pillow case - and his body was so white, his ankles crossed, his face flushed. Even then, God's peace prevailed. I knew God had him.

The next morning when we arrived at the hospital, I was floored to learn that Dan was 1) awake; 2) responsive; 3) communicative. We did not expect that. In fact, I had sent a message to Dan's siblings to bring books to read to him. We expected that at least on Saturday - and maybe Sunday - Dan would be mostly in a sleeping/coma-like state. Not at all.

It was a miracle! By the next morning, he was continuing to do great. He was being weaned off the ventilator to breathe more on his own, and the tube was removed around 11am. He had that tube in no more than 36 hours. He was still on oxygen. After two hours, he could start talking and eating.
The first thing that Dan ate was Jesus. Our pastor, Father Mark, visited around 2pm and gave us communion.

Dan spent the rest of the week recuperating and getting weaned off oxygen. He was released from the hospital on April 16 (Saturday). Since then, Dan has just continued to build strength and improve.

On April 29, we had our first visit with Dr. McCoy in a month. His blood work was completely normal! For the first time in 2 years, Dan's white blood cells were NORMAL. As a result, she did not have Dan receive chemo, and she weaned his steroid to every other day.

This past Friday, we met with Dr. McCoy again, and his blood work was still good, still normal. Again - no chemo, and now he's on the steroid every 3 days.

What's next? Well, Dr. McCoy is off for the next 5 weeks (but will still have access to Dan's labs and be in touch). Dan will have his blood work drawn every 2 weeks and sent to Ann Arbor. If it's not good - he'll get chemo. If it is...then, maybe we will try no steroid.

What's going on with the transplant? Geez, that's the million dollar question. It's not sustainable for Dan to be on the steroid long-term - since he's already had the complication with PCP. If he is able to be healthy without the steroid, then is a transplant necessary? This is where we are right now. It's very weird. To me, a bone marrow transplant - with all of its risks - shouldn't seem like a choice - like an elective surgery. That's how it feels right now.

I am content to wait to see how Dan responds to the weaning - especially with how good he's been feeling. Dan is content to see how he's doing. (We're not talking wait it out forever - but the next 2-3-4 weeks) [But] We continue to get pressure from those outside of the decision-making process who would like "to plan." I would ask for all of you [who made it this far in the blog] to pray for us in the next month; that our path would be clear - and that we would have peace - and that we would be firm knowing God's with us, regardless of people's opinions.

Anyway. That's the story.

OH WAIT! That's not the whole story...remember on that Friday afternoon and all that was happening? Besides me feeling the tangible presence of peace (the Holy Spirit)...about the time that I was sobbing in the car, my mom met her pastor to pray. She said that while they were praying in the parking lot, this rushing wind came around them and was moving in the trees - very John 3:8. [This reminded me of a conversation we had with a friend's mom the day of Dan's diagnosis; her first encounter with the Holy Spirit moving was wind.] Then, later that afternoon - about the time of Dan's procedure, my dad felt that he needed to pray at that moment for Dan. While praying, he started to speak in tongues (Romans 8 - the Spirit intercedes for us on our behalf), which does not happen to him often.

So freakin' cool. Our God IS an Awesome God.

Believe it. [or don't; you do have that option]


PJ said...

Thanks for the thorough review, Jessica. I know that that took great effort, corral of the emotions, challenge to memories you'd rather not have.

I think the positive spinal tap news came in mid-March. The procedure was scheduled for the day after we visited with you in the restaurant.

Don't all of us humans want to know the plan, God's plan. We are so determinate, we Americans. Such control freaks, ever seeking to be master-and-commanders of our fate. Self-reliance is our Baal.

Free-floating flexibility, resting in hope, peace in the moment, joy is all circumstance - phrases and states that are hard to fulfill. Larry and I admire you, your faith your verve, your forbearance. We send hugs.

Dewey Longuski said...

Yes, I did make it all the way through; and, Yes, we will continue to pray for you and Dan. Hope to visit with you guys at Mass or in ANH this summer.