One thing I forgot to mention yesterday was that we decided to wash Sarah's hair. It was starting to smell. We also cut a few inches off of it since there were knots at the ends. We laid her on some towels to prop her up and laid her head over a bowl and washed it there. It wasn't the best wash but it was much better than before. She did have a bunch of hair come out with the wash. It is also looking thinner. It looks like she will probably lose it before too long.
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| Sarah doesn't like to get water in her ears |
We had an interesting day in clinic. The doctor came in and talked to us about how they determine whether someone is CNS (Central Nervous System) positive or not. When they do a spinal tap and pull some fluid out to test, there is usually contamination with blood vessels that surround the spinal column. So they take a ratio of blast cells verses white blood cells in both the spinal fluid and in the blood. If the ratio in the spinal fluid is more that 2x that of the blood, they say that a person is CNS positive. Well, Sarah's ratio is 2.007x. This means technically she would be classified as CNS positive. However, the ratios are estimates at best. In addition, Sarah went from 95K white blood cells to 44K white blood cells over night. The 2.007 number is using the 44K number, which was taken around the same time as the spinal fluid, but not necessarily at exactly same time. Since these numbers are estimates as well, is she CNS positive or not? Well, right now she is classified as a CNS2 or CNS-undetermined. This is the grey area. So what does this matter? Well, it has a decent impact on treatment. If she is CNS positive that means she automatically gets 2 rounds of each of the intensive rounds of chemo during maintenance. It also means that they do cranial radiation treatments as well. This isn't the best of news. It also means that we may have to make a big decision about how we treat her when we finish consolidation which is the round after induction. For the short term, it means that she will have surgery and get a spinal tap every week during induction. If they do find more blast cells in the spinal fluid, that means that she is CNS positive and we need to go down that treatment route. If there are no more blast cells and she responds well to treatment during induction, the decision to treat her as CNS positive will have a greater impact to her treatment plan, as she will do 2 rounds of each the intensive rounds during maintenance instead of 1 (she only does 1 round if she is a rapid responder). We are learning more and more everytime we visit the clinic. Things like this help us realize that that we have a long way to go in Sarah's treatment.
After Sarah's surgery today, she was in the recovery room. Even though we told her she could eat, she said that she wanted to wait until she got home to eat the Cheetos that she had. She waited until we got up to the clinic where she still needed to get her chemo meds. Then she ate the whole bag. It was the big snack bag.
Sarah is off the DEX and the doctor said probably just a week left of the IV antibiotics. Then she will only be accessed to get labs and get her chemo.
We love you all and are grateful for the support and prayers. We feel them and they help sustain us.
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