October 2, 2016


Maintenance Day 541: 62 Days

Scarlett’s labs this morning were a mix of good and bad. Her Hgb went down so she is currently having a blood transfusion. Her platelets went down as well but we wait on that. Her IgG responded perfectly to the IVIG yesterday. We will repeat that again tomorrow to get it even higher. Her white count increased as well so her ANC is up to 400. Her body is making exactly the right kinds of cells to show improvement!

Her organs are still angry. Her pancreas is extra mad and letting us know with really high enzyme levels. We are trying to give her GI system a break so she will get 75% of her nutritional needs from the TPN. She will be NPO (nothing by mouth) until we see some improvement. Pretty much as soon as Dr. B said NPO, Scarlett began asking what she could have for dinner. She hasn’t stopped asking since last night. “Mommy, I’m hungry.” “When can I eat?” “But I’m hungry, Mama!” It’s difficult for Brock and I to eat when we don’t want to eat in front of her. We thought a dairy free diet was hard but this is excruciating.

Scarlett gets her nitazoxanide twice daily. She gets it crushed in a med cup and then mixed with about a teaspoonful of yogurt. We scoop every last crumb of that medicine out, then lick the spoon clean, then she can have a couple more spoonfuls of yogurt. That is her food for the day. She gets it every 12 hours and asked for it for about 11 1/2 hours before her next dose was due. As we increase her TPN, it should help satisfy her hunger.

In order to help Scarlett’s counts recover to fight this infection, we have stopped her chemo. We need for her to have the cells that the chemo kills to get rid of this infection. When we feel like she is improving significantly, we can restart her chemo. We will start at 25% of her dose and increase as we can. She will still have the same end date. Hopefully, we have done a good enough job the past 26 months to be good without some doses of chemo. We don’t really have a choice right now.

We began to talk about the things that were required for discharge. She must have an upward trending ANC, less abdominal pain, less stooling, pretty much a general sense of improvement. When she is discharged, we will have to obtain her medication from an outpatient pharmacy. If she continues to show improvement with it, we will continue for two weeks and test again. If her stool still contains cryptosporidium, we will treat for another two weeks and test again. So, 28 days x 2 doses per day x $100 per dose = a lot of money. We will call our prescription insurance tomorrow to see if it will be covered. Anything further than 28 days hasn’t been studied. From what I have read, it may take months to get rid of it. When we get home (or when my mom gets home), we need to begin washing everything. Everything that may have come into contact with her stool (clothes, sheets) must be washed in hot water and dried twice. The only thing that kills cryptosporidium is extreme heat and extreme cold. So I guess we need to light our house on fire.

Scarlett woke up in a great mood this morning. She sat on my lap in the chair and we laughed and joked with each other. As the day went on, and she realized she couldn’t eat, she got very hangry. She cried a lot. She didn’t want to share. She wouldn’t smile. As soon as her blood transfusion was finished, she perked right up. She played, laughed, smiled. She was our regular Scarlett. I hope that this continues. It certainly makes us feel better.

We had a lot of visitors today. It helped pass the time and was really nice to see Tate and Evangeline. We have realized that Scarlett has no memory of staying here before. She hasn’t stayed since July 2015. Luckily, when we walked in, our favorite nurse was on for the weekend. It was so nice to have someone that we know and love get us through this difficult time. We never imagined to be back here again. We are 62 days from the end of treatment. We thought “we will deal with her foot problems until she’s done with treatment because it’s only two more months and then it will get better”. We thought “we will deal with her dying port because it’s only two more months and then it will get better”. We never thought we would be two months from the end and dealing with a life threatening infection. We don’t want to think “we will have to deal with this infection for the next two months before she has a chance to really fight it and get better”. 62 more days. 62 more days. 62 more days.

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