No Diagnosis – We’re House-ing This Shizzle Up Ya’ll: Day 5

Hi everyone,

Well… we all knew Lisa was special, and complicated, and singular…

So, no diagnosis today. And we’re being sent back home. We’re in the realm of very rare, very hard diagnosis. We should have a diagnosis by the end of the week, but it’s possible it will be more of an elimination diagnosis than one of a definitive nature.

Leukemia is almost certainly off the table. There are still one or two types that they will continue to test for. (Hairy cell leukemia which would at least be a fun name).

Still looking at Aplastic Anemia – most likely this. If it is aplastic, she would start a treatment plan of imunosupression – it would be a few days in the hospital for each treatment over a period of time. If it doesn’t work, Lisa’s family, get your health on, because you’re all going to be in line for bone marrow transplant – sisters first.

Also looking at hypoplastic anemia. That would require light chemotherapy (like kinda pregnant? we don’t know) with stimulants for the system.

And looking at really left field possibilities of some outside force that wiped out her system. That would regenerate itself over time, and we would help stimulate the system. We will start writing down everything that happened in Alaska so if we’re in this category we can start to look for something crazy.

What we know:

Her bone barrow is almost completely empty. But not all the way. Just a lot of empty space.

We are VERY happy with our doctor. He is also very honest that even in a big city, a regular hematologist just doesn’t see these diagnosis. So, he will be working with us to find the rock star docs, and then we will probably stay with him to implement as much as possible in the smaller setting.

IF YOU HAVE SUGGESTIONS ON DOCTORS OR MONDAY MORNING MEDICAL QUARTERBACKING, PLEASE DO NOT SEND IT TO LISA. AND HONESTLY, UNLESS IT’S THE DIRECT LINE TO THE GUY, I DON’T WANT MUCH OF IT EITHER – but whatever you have please send to me. This is going to be one of a couple of people as the specialist, and we know how to find them once the final tests are in.

Numbers so you can all play along at home (and for the doctors and nurses):

29K platelets
1.7 white blood count.
I don’t know why I refuse to pay attention to the hemoglobins, we just know they are low.

Her numbers have dropped again, but not enough for a transfusion – he expected to be transfusing her today, so he felt good, that said these numbers are really serious. So again – ISOLATION PROTOCOL! No raw food. No juices. No hugs. If you or your family are sick please stay away.

Also, I know you all want to visit, and of course she does too. If you are coming, please don’t stay for a huge huge amount of time. She needs rest, but won’t make that happen for herself .

So, what now? Remember, we’re in rare-land. They are doing two more days of tests on the bone marrow and examining it. This can’t be diagnosed by a machine. One way or another we should be starting treatment next week. The doctor says the wait right now is safe while we figure out what this really is. Safe, except for her staying healthy (infections) and not bumping anything.

For whatever reason, Lisa and I both feel more hopeful today. We know it’s something, something big, and not knowing if frustrating, but we’re in good hands, and Lisa is so strong. We’re going to beat whatever comes. Today, we just can’t wait to go pick up Theo with both of us in the car. Yay!

Love,
Chris

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