Update July 15, 2023

 Some things have been left out, so if you know more than i've written here, please keep it to yourself for the time being.

The last update, from July 6, ended with her first gemcitabine treatment. I put in there that her bilirubin was 12.4 before treatment, which necessitated a long wait while her doctors conferred to decide whether to move forward. We were also attempting to schedule abdominocentesis for the following day.

She did get the abdominocentesis done on July 7. They drained 1.2 liters, almost 3 pounds of fluid, off of her abdomen. It was less than expected, but that's still a pretty hefty amount. She did feel a bit better afterward, but not as much as she'd hoped. They told us to come back any time that she felt like she needed it, as ascites fluid can build up very quickly, even as much as a liter a day. They did schedule another one for 8am on the 13th, to be done right before her next treatment. She was already feeling the pains in her abdomen by Monday, though, and we had considered going in for an additional draining, but she decided to wait until the scheduled time on Thursday.

Thursday the 13th rolled around, and we went in for the next gemcitabine treatment. The abdominocentesis begins with an ultrasound to locate and quantify the liquids they need to drain, but as they searched around, they couldn't find any. All the additional discomfort in her abdomen had to be coming from somewhere else, it did not appear to be ascites. They didn't drain anything.

They drew blood, as they always do before treatment. We waited. They started her on a bag of IV fluids to help alleviate her chronic dehydration.

When the bloodwork finally came back, it was not good. Her bilirubin was up to 12.5, only a slight increase from last week, but an increase nonetheless. They determined they would not be able to give her treatment.

It was explained to us at this time that the gemcitabine is not supposed to be given if the bilirubin is over 12. The discussion last week had resulted in them giving it to her at 12.4 anyway, with the expectation that it gemcitabine would make the bilirubin value come down, and with the understanding that if it did not, the treatment has failed and could not be continued.

This is where we're at. Gemcitabine, the Hail Mary, the last available treatment, has failed and cannot be continued.

There are no other treatments available to her.

I'm not going to lie. We've been given the potential timeline and it is very short.

I know. I know everyone wants to keep fighting, most of all her. People have sent us dozens of holistic cancer treatments, and we've tried most of them. People have asked us about other medical procedures and drugs that they want to know if we've tried. Yes, we've talked about ursodial to bring the bilirubin down. No, she's not eligible for a liver transplant. Turkey tail mushrooms were our first resort. Manuka honey. Castor oil. We spoke to a cutting-edge specialist about Y90. Thank you all for your suggestions, but nothing is working. You can't just google "how to cure cancer" and expect it to work. And yes, of course, we live in California and we've been dealing with this for three years, yes, we have absolutely tried cannabis. I'm sorry if i'm coming off as rude here, but we're fielding these messages every single day and we're just so tired. I know you want to help. I wish it was possible. I would pull the cancer from her body with my bare hands and eat it if i thought it would do anything, anything at all. I know.

Her bloodwork also revealed that her ammonia level is significantly elevated now, so that's become a concern. It makes sense. If you search for hyperammonemia, you can find a list of symptoms, and she has all of them to some degree. Confusion. Ataxia. Abdominal pain. We've been given some medication to help get her ammonia down, but the main side effect is severe diarrhea, and since we're already struggling with dehydration...well, that's a fine line to walk.

Dr. RT showed us some of her recent imaging. Her liver is enormous and is pushing all of her other organs out of the way. Something like 25% of her body mass is cancer now. There's just too much going on in there.

She was also anemic, so they sent her to the hospital for a blood transfusion. I asked if they could send us to the Cedars in Tarzana, but they insisted on Beverly Hills, in case she was admitted, so Drs. L, RT, and R would be able to check in on her. They said to head straight there from the clinic, and Dr. R would expedite her straight through so we wouldn't have to wait. I told them that they'd said the same thing last time, and we ended up in the waiting room for 6 1/2 hours. They assured me they'd do everything they could to avoid that happening again.

It still ended up being a 3 1/2 hour wait for a room. After that it was still several hours before they got the transfusion started.

She did not end up getting hospitalized this time. They sent us home around 1:30 am.

And unfortunately, Amanda's phone got left tangled in the sheets of the hospital bed.

As if we don't have enough problems right now.

I'm still working on tracking it down. I may write a whole update about just that debacle later. Still hoping for a good resolution. But aside from the absolute nightmare of losing a phone at all, the cloud wasn't configured, and nothing has been backed up from the phone since the beginning of May.

We're incredibly grateful to Nat for having been here through this. I know it's not what any of us expected her visit to LA to look like, but i can't overstate how good it was for us to have her present as times have gotten harder and harder.

So that's it. We've got a few more appointments and some loose ends to tie up here in LA, a little packing, and we'll be heading back to Wisconsin to spend as much time with friends & family as possible. Our departure date is still up in the air, but it will be this week.

When we get back, we'll be enrolling her in hospice care. We've already discussed this at length with Dr. RT, and she'll be helping to coordinate efforts with the Wisconsin team to ensure Amanda gets the palliative care she needs.

One of the last things Dr. RT said to us at the appointment was how devastated Dr. L was about the way things have turned out. He had gotten personally invested in her case. He liked us. He really thought he could get her through this. He has been very affected by everything that's happened. Dr. RT said oncologists just do not get that way about their patients, this was a rare thing.

I know a lot of you want to help out. There are things that need to be done. The easiest and most important is, of course, money. I've always said i hate plugging the GoFundMe but at this point it's such a necessity to get us home and to get her care, as the MediCal will not transfer to Wisconsin and Medicare leaves us with huge copays that i don't know how we're going to handle. We're looking into BadgerCare and other options, but it's certainly not going to be as financially helpful as MediCal has been. We're also looking for some furniture, namely a few couches and beds, so if anyone has an old one they were planning to get rid of that's still in useable condition, please let me know and i can have someone pick it up.

There will be more things. I've always tried to ask as little as possible of all of you, but i think the time has come where i just can't do things on my own anymore. I'm about to ask a lot of you. Some of you i've already asked a lot of, and i'm humbled by how quickly everyone's sprang into action. We have an incredible support network, and we're really looking forward to being able to see you all in person again.

Love you all. I'll keep in touch.