Kim's Leukemia and HLH Tribute

Update

Kimberly passed away early this afternoon surrounded by me, her father, her brother, and my parents. It was quick. Peaceful.

Just since yesterday, she started having serious problems with her blood pressure. Things were stabilized mostly overnight, but then took another poor turn this morning. She was having trouble getting her words out in the last day, even though mentally she was clear to the end. In her last hours her disease was just too resilient and we had to say good...bye to someone that I will always love more that I can even find words to express.

Thanks to everyone for their meals, donations, time at my house, shifts at the hospital, cards, gift cards, prayers, well wishes, playing with the kids, stray thoughts, friendship... everything. I'll never be able to thank everyone for what they've done. Even so, know that every action has been deeply appreciated.

Kimbo, we will see each other again.

Love to all.

Elliot

http://www.clementsfuneralservice.com/sitemaker/memsol.cgi?user_id=1836478


Friday, May 20th we took Kim to the emergency room. Later that night we were admitted to the hospital. Almost a week later we started treatment for HLH, an immune system disorder.

I don't know how long we will be in the hospital.
We don't have a strong indication of her prognosis.

I don't know what any of this means for the future. For now, per doctor's orders, we're taking it a day at a time.

We appreciate the love and support of all of our family and friends going forward.

We're on CaringBridge, for those who want to follow more closely. I'm trying to post updates as often as possible.
https://www.caringbridge.org/visit/kimberlybuff

From our first post on CaringBridge...

At first Kim couldn't breath out of her nose for a couple of weeks. Really annoying stuff. So she went to the doctor to get treated for a sinus infection.

Then she got a chest cold. Nothing out of the ordinary. Except this one just went on for weeks. And there were fevers occasionally. They were never that high, just enough to knock her out for the evening. But the coughing just went on and on and on. Never a productive cough, just a never ending, weeks on end cough. This went on for about a month. She had some soreness in her abdomen, but we thought it was just soreness from the cough.

Finally, the pressure came. In her abdomen. At first we thought it was just some bloating. Or some other kind of stomach ailment. And the exhaustion came. One day she went back home to take a quick nap before work after dropping the kids off. She woke up 4 hours later, not feeling any better at all. Meanwhile her stomach was getting bigger every day. She made a trip to the doctor where they took some xrays and did some bloodwork. They thought about sending her to the hospital but didn't see the immediate need. Going back to the doctor the next day she was told that her blood work was alarming and she was sent straight off to the emergency room where she was told that her liver and spleen were enlarged, significantly, her spleen on the verge of rupturing. Her kidneys were stressed. And all of her bloodwork counts were frighteningly low.

That's how we got to the hospital. We've been here since Friday, May 20th. And since then they've pumped Kim full of fluids and antibiotics. They've run tests and tried to get to the root of what is happening inside her body. Once we got through the weekend we finally had PET CT and a bone marrow biopsy (from her lower back hip for those curious) which would give us a clearer picture. And they did. The diagnosis was lymphoma. We would find out what kind of lymphoma, how severe it was, once we got the bone marrow results back. The plan was to move us up to the 'cancer' floor and start treatment immediately.

Only that didn't happen. Instead we waited. And we waiting. Finally the doctors came back and told us how when they went to confirm the lymphoma diagnosis with the bone marrow biopsy, they couldn't. And there really should have been some cancer cells there. Something. Only there wasn't. Instead, they had to consult their medical journals and other doctors to figure out what was going on.

For right now the diagnosis is HLH, which is basically an immune system disorder. The though is her immune system starting going into hyperdrive, possibly related to a minor EBV infection in her system. According to the test results they have and her symptoms, this seems to be the best match for her current condition. I apologize if this is the part where I start to sound really uninformed and maybe even a touch stupid. As we understand it, HLH is a somewhat new disorder, very little is known about it, and its rare. So, we're not exactly off to an encouraging start with out diagnosis. And this isn't exactly a 100% guaranteed diagnosis either. It could turn out to be something else or it could be that we don't know enough about this disorder to treat it properly. There are a lot of questions for now that don't have a lot of answers.

Good news though is we have a treatment plan and we have finally started doing something besides just running tests. On Thursday night we started a round of steroids (which had Kim feeling really good on Friday) and on Friday we started administering a drug called Rituximab. And if you think this journal entry was long... go try reading about Rituximab. Its a drug that is used to treat a lot of cancers, sort of a pre-chemotherapy. It could be that we have to go with a more traditional chemotherapy treatment in the future but for now the doctors want to see how she responds to the Rituximab. We have another treatment scheduled for next Friday.

So, how is Kim today? Still about same, unfortunately. We're still in the hospital and will probably be here at least another week. A lot of her numbers (liver function for example) are a little better. And have been getting better ever day. She's still terribly uncomfortable though, since her liver, spleen, and now intestines are all still enlarged. These are all causing her abdomen to be very swollen and very distended. This is also putting pressure on her lower lungs, making her short of breath at times. And she's still running some fevers. Today we got up to 102.5 before taking Tylenol to bring it back down (they're trying to limit the use of Tylenol since it is a further stress on her liver). On the plus side her abdomen is a little softer and she's trying to walk a little when she has the energy.