October 1, 2016


Maintenance Day 540: Crap Upon Crap Upon Crap

The results of Scarlett’s tests are back. Brock and I feel entirely defeated and frustrated.

Scarlett’s stool cultures came back for cryptosporidium. This a parasite that is well known in Wisconsin because the largest case ever was in Milwaukee. My immediate thought was about boiling water and testing our water and where has she been…

First, Scarlett’s lab results: her white count is down, her hemoglobin is down, her platelets are down, her IgG is down, her weight is down. Pretty much everything she needs to fight an infection is down. We have stopped her chemo in order to get her counts to recover to try to fight the infection.

Second, her ultrasound, X-ray and labs: the crypto has taken over her gut. She has colitis (swollen intestines), pancreatitis (swollen pancreas), cholecystitis (swollen gallbladder), and hepatitis (swollen liver). Her body is angry. Her gallbladder is angry, full of sludge and air. She will be NPO (nothing by mouth) to give her gut a rest. She will get her nutritional needs from her IV. We are trying to explain that to her right now but she is spending her afternoon trying to figure out what she wants to eat.

Third, she developed a fever last night. While Scarlett typically sleeps warm, we took extra care and started an antibiotic. This will hopefully help with anything going on but it may cause diarrhea (😂). Seriously.

Fourth, the crypto. Cryptosporidium is a parasite. Our body uses its t-cells to fight parasitic infections. Just our luck, this is where Scarlett’s cancer is. Crypto has one medication that can be used to treat it. Just our luck, it doesn’t work in immunocompromised patients. We are going to try anyways. I don’t even want to know how much it costs ($100 per dose I guess). They were able to find a couple doses in Howard and Milwaukee. So the best way to treat it is to let the body do its work. If your body could do its work. The closest study to Scarlett’s case is in children with HIV. It didn’t show any benefit but children were treated for 28 days anyways. We will give it a three day try and see if there is any improvement. Without her body recovering to fight it, I don’t even want to talk about it.

Fifth, our dog. Our dog is old. We know that he is approaching the end of his time. It has been so hard for us to contemplate losing him with everything else going on. We are afraid that his bowel issues may have contributed to her infection. We should get him tested, have him put to sleep, and replace our carpet. In our free time. With our extra money.

Sixth, I am going through some physically and emotionally trying issues myself that I’m just not ready to talk about. On Monday, I will go for tests to see exactly what is going on. It’s difficult to focus on myself when I just want to help my baby. Even Dr. B and Scarlett’s nurse today, when they found out, shared in our misery.

I am not quite sure exactly how much more we can take. Good news or a break or a winning lottery ticket would be awesome. I am so lucky to have the greatest husband to love and support me. He shares in my highs and my lows and takes care of me every step of the way.

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