This morning, Lori again noticed that it was hard to breath when in certain positions particularly when lying down.  Her abdomen was bloated as well.  It was clear that the fluid had already filled again in the space created from the last procedure.   We were able to speak to her interventional radiologist since he’s a friend of the family, and he let Lori know that he would squeeze her in for another round of draining tomorrow.  Awesome!

Clearly the rate at which she is building up fluid and needing to drain isn’t sustainable, and the doctors all recognized this.  In response, they plan to install a tube semi-permanently which we can drain at home as needed.  I’m sure it will be an annoyance to have a catheter constantly in the way, but it will be well worth it for the comfort this ability should provide.

We also scheduled appointments with Dr S on Monday to discuss the treatment plan moving forward.  I don’t know if he’ll want us to move on from the chemo she’s currently taking.  It will be nice to at least know what he thinks.

Pain-wise, she is 0-1 so that’s nice.  However, she’s extremely tired all day long.  The drugs have her subdued fairly hard, but she’s doing well all things considered.  Again, pain 0-1 is a big win.

Yesterday, we got a call that MVH was able to fit Lori in to have her abdomen and chest drained.  We arrived to the hospital at 12:30 and by 2:30 they were ready to begin.  The doctor who performed the procedure was the husband of a great friend of our family, and he was fantastic.  He completed a thoracentesis (chest drain) and a paracentesis (abdomen drain).  They worked for around 45 minutes to complete both procedures, and they extracted approx 3.5 liters in total.  2300 cc’s from her abdomen and 1200 cc’s from her right lung.

She immediately felt some relief but she was sore and uncomfortable as her lungs were working to fill in the space that had been vacated by the fluid.  It causes coughing and scratching around the lungs so she couldn’t really enjoy the relief immediately.  Today however, she has very little pain overall and her breathing is normal.  In fact, she said she has no pain tonight.  However, she looks pretty rough if I’m being honest.  Her face looks wearied, and she is very tired throughout the day.  She’s too exhausted to move around much, and the drugs keep her loopy and sedated most of the time.  It’s frustrating that she can’t function despite having no pain, but for now I’m perfectly happy with the pain free part.  We have plenty of help from family in town so we’re getting along very well. We’re also looking for signs that the chemo is working.  Xecloda’s efficacy is still ambiguous, but we’ll stick with it until it’s certain that it’s not working.  The most important thing is that her liver recovers so the rest of her body can catch up. We’re hoping Lori can continue to operate pain free so that we can ween off of the opioids.

We’re also so thankful to everyone for all of the day-to-day support.  Home school moms are really stepping up to help teach Claire!  Our parents are always helping at the house.  The meal train is also up and running again, and that makes the evenings much easier.  We appreciate your prayers!  Keep em coming.

We flew to California last week and had a great time visiting friends and attending a conference at a church near Sacramento.  Unfortunately, we had to visit an ER two separate times but for similar issues.   On Thursday night, Lori couldn’t sleep due to pain increasing in her swollen abdomen.  By 4 am it was too much to work through in the hotel room and we decided to check in to the local ER.  The local ER was a mess.  I chewed out a janitor, a nurse, and an admin person about the filthy bathrooms and their lack of care for patients.  We waited hours between checkups from nurses or doctors.  IV bags emptied and Lori and I swapped out new ones because no one came.  The real kicker was when the moans of a man in an adjacent room became too loud, and I actually heard a med tech ask his buddy “is he dying…can’t he die quietly?”  Despite the conditions, she recovered from the pain and was discharged by 1 pm. Two days later, she had another difficult night sleeping due to shortness of breath.  The abdomen swelling had begun to press up on her lungs when she laid flat.  This resulted in her waking up suddenly without breath.  Since it was one day prior to our scheduled flight home, we wanted to get her checked out again.  This time, we drove two hours back to to Vacaville to a better facility, and they did a great job with her there.  Scans were accomplished, and the ER doc spoke with Dr. Marinella on the phone.  The consensus was to let her fly home without taking any additional action until back in Dayton.

We flew home on Sunday without any issue and today we went to MVHS for a checkup with Dr. Marinella.  He ordered an ultrasound which was accomplished that same hour.  The results showed small to moderate amounts of fluid buildup in many different quadrants of her abdomen as well as some buildup around her chest.  Tonight, Dr. Marinella will review the scans and decide on whether or not to tap the pockets of fluid to drain and relieve some of that pressure.  We’ll hear about that tomorrow morning.  I’m expecting that they will drain at least some of the fluid.

The cause of the fluid buildup however, is likely liver performance.  The liver is still diffuse and likely failing to filter properly.  We’re still hoping her new chemo will help turn around this negative health trend.  Her pain has been down today generally, but she’s not strong.  It’s good to be home where she can fully rest as much as she wants or needs to.

Well, we’ve been home for a couple of days now, and some things are better while others are worse.  Overall, her pain is down during the day (2-3) but it’s up at night (5).  She’s taking every prescribed opioid at regular min time intervals, and still her legs and back hurt.  She also started her chemo and that has been going now for a couple of days.  That’s the good.

The bad thing is that the day we arrived home, her stomach began to expand by significant amounts.  In one day, we estimate that her waistline increased by 5-6 inches.  If you just met her and didn’t know any better, you would swear she’s currently pregnant and in her third trimester.  It really does look exactly like a pregnant belly.  Unfortunately, we’re pretty sure it’s her liver which has expanded well outside of her rib cage area and which is pushing her organs around and compressing her stomach (tiny appetite).  We know that as of the day she was discharged, her liver was already extremely diffuse.  We’re not certain why that expansion continued at home, and we’re not 100% sure it’s the liver doing the continued expanding, but that just makes sense.  So, we’re going to try to see her Dr here in Dayton to take a look it tomorrow.  If it’s the liver, hopefully it’s stable and then we can just let the chemo do its thing and ideally put things back to normal.  That’s pretty much the way it happened last May.  While not as extreme, her liver had grown and had become misshapen when this happened last May.  She recovered nicely last time, and I see no reason that can’t happen again.  On the plus side, we’ve been measuring her waistline every morning and evening to track the growth, and today we found that it has actually decreased by 1 inch over the past 24 hours.

Also, we’ve been planning an important trip for the past month or so, and with everything happening, it may not be possible for us to travel.  This trip is something that Lori has felt drawn to do, and it would be disappointing if we can’t make it happen.  This isn’t a vacation, but it involves a plane ride of a long distance, and in her current condition, that could be risky.  Also, being away from home for 5 days poses plenty of risk in and of itself.  This trip is important enough though that we will likely travel if she can maintain her current state of health through Tuesday.  This is one where we need wisdom to make the right call.

Thanks everyone for all of the support.  We aren’t communicating well on phones, but we appreciate the texts and notes of encouragement.

Do you hear what I hear?  The guy across the hall hacking and wheezing?  The steady beeping of a neglected Alaris PC 8015 series I.V. machine begging for a reset?  The impossibly loud door clicking open and shut just as you fall asleep?  Or the automatic shuffling of the mattress’ bed sore prevention system as it rises and falls through the day?  That’s right.  It’s hospital sounds!  And we’re enjoying a little well-deserved time off at the prestigious Miami Valley Hospital in Dayton.

Kidding aside, we’ve been here for a couple of days, but we have a plan to get out, and I’m optimistic about it. Continue reading

posting this from the iPhone so forgive the errors.  Two nights ago, lori had a fever and pain spike.  With only 20k platelets, her immune system was way off, so we went to the ER.  She was checked in quickly and they gave her some dilauded for the pain.  Over the next hour, her right leg and knee got worse; rated the leg pain at 9.  The dr ordered antibiotics to fight infection, and fortunately by the time the IV arrived, her fever was already down.  After the antibiotic infusion, we were given the option of staying or being discharged.  Lori wanted to go home, so we did.  Since then, she’s been on a steady schedule of taking morphine, dilauded, OxyContin, and ibuprofen.  Of corse, that brings back the loopiness, although she’s not too out of it.  She can’t drive now though, and she can’t be left alone until she can scale back.

My parents came last week to help out and now lori’s mom is here to help this week.  Next week, I’m on leave so we’re good to go during that time.

Today, Lori had full body scans done as well as a blood draw for another platelet check.  We don’t have those results in yet.  At the ER, her platelets were at 19k.

Right now, Lori is between treatments as she is no longer taking the Olaparib drug but has not yet begun the Xeloda chemo. Two nights ago, she had quite a bit of pain in her back while lying in bed. During the day yesterday, she felt great and was able to move around and have a completely normal day. Unfortunately, last night she was kept awake again by very bad pain in her back and legs and shoulders. She rated it a 7 out of 10. We didn’t go to the ER, but we almost did. Continue reading

Well, we were all excited about the new drug. This was the first PARP inhibitor that she qualified for, but unfortunately we’ve already thrown it out (Not literally…each month’s supply costs $14K!). Over the past week, the spots on Lori’s head have increased in number. She found three new spots this week alone, and there have been a few spikes in pain as well. She saw Dr. S today, and he confirmed that it looks like Olaparib won’t work for her. So, he changed her back to a chemo: Xeloda. This one is pill form, so it’s nice she won’t have to sit in an infusion chair every week. The side effects are fairly tame as well. She should be able to keep her unbelievable streak alive of not losing her hair! Seriously, she might break some kind of record. I shaved my head in “solidarity” like a year and a half ago. She never lost her hair!