Elizabeth, Kristen, and I had to have 10 hours of training on how to care for Shoshana's tracheostomy, both for regular maintenance and cleanings, and for emergency situations. The most common thing we do is suction mucus out of the trach (otherwise it will get gunky and clogged). We do this whenever Shoshana is gurgly, which happens a lot in the mornings, but also at any and every other time, especially if she gets upset, or if she is coughing (or especially if she's vomiting). We also clean her trach stoma and change her dressing once or twice a day, and hook her up to monitoring equipment while she's asleep.
Shoshana had been put on formula feeds in the hospital since before her trach because she hadn't been eating. The pain in her throat made it difficult to swallow, and her swallow wasn't good enough to keep some foods and liquids out of her wind pipe, so she could only eat certain consistencies of foods and specially thickened liquids.
Kristen had been reading a book called The China Study, which brings to light some research about the association between amount of animal protein in your diet and the growth of cancer cells, especially the type of casein (a protein) that is very high in cow's milk. The formula Shoshana was getting in the hospital was milk-based, so we asked about other options. We could go with a soy-based formula, but we weren't too thrilled with that, and it would be mostly GMO, so we instead opted for a home-made vegan recipe created by the hospital nutritionist. It's made from hemp milk, pea protein powder, oatmeal, spinach, banana, sweet potatoes, almond butter, apple sauce, flax oil, and avocado, all of which are real actual food.
Because of Shoshana's sensitivity to bacterial infection while on chemo, we have to make it fresh daily, and bring it to the hospital on ice. In order to get it fine enough so that it doesn't clog the feeding machine or her N-G tube, we bought a Vitamix blender (and borrowed one from a friend until our unit arrived).
It actually tastes quite good. When there are leftovers (she can't have it if it's over 24 hours old), we bring it home and drink it ourselves. We mix it 50/50 with goat's milk for Abigail (or give it to her straight in a sippy cup, and she devours the stuff.
As soon as we put Shoshana on it, her diarrhea resolved, and her energy returned. As soon as we put Abigail on it, her constipation resolved. Perfect miracle food? Quite possibly.
Vincristine is the chemo drug which caused Shoshana's vocal cord problems, making the trach necessary. She has also suffered other nerve damage. She has also suffered quite a bit of peripheral nerve damage, resulting in lack of reflexes and coordination, especially in her feet and legs. Peripheral nerve damage is normal for patients taking vincristine, and Shoshana got an extra generous helping of the normal side effects, plus a few unique to her.
Elizabeth has done a lot of research on vincristine, in order to make sure that it is indeed necessary for Shoshana's treatment (and I have read several of the studies that she turned up), and to look into other cases of unusual side-effects. Despite what it does to Shoshana, we are convinced that it is an essential part of her Leukemia treatment. Based on how it effects her, the protocol dictates that she be given half doses, instead of full strength. Different people metabolize drugs differently, and it may be that it hangs around in Shoshana's body longer than in other people. The hope is that with half doses her side effects will be manageable, while still getting the cancer-killing benefit from the drug.
Shoshana was able to come home on Wednesday! ...for three days. On Saturday, her trach discharge was increased, and her skin was reddish near the stoma. In the evening, she spiked a fever, and we took her in to the hospital. By the time that we got to the emergency room, her fever had gone down, but they trust the home temperature. She was admitted to the hospital, and they took some samples. She was negative for anything viral, and they had started her on antibiotics right away. In the morning, her stoma was red and swollen--clearly infected. Once they narrow down what kind of bacteria it is, they will switch her to a more targeted antibiotic. Meanwhile, she will be in the hospital for a few days at least until it resolves.
When we have her at home, we have home nursing care to help with Shoshana, which is definitely a blessing. We were going through the process of familiarizing the nurses that will care for her with Shoshana's needs when her stay at home was interrupted.
Shoshana is almost at the end of the Consolidation phase of her chemo. At the end of this phase, they will do a bone marrow biopsy and see how many (if any) leukemia cells they detect. (Even if they detect none, she still needs to continue the treatment, since leukemia has a habit of hiding away, and then coming back. This is why the treatment is long-term.)
She will need to be admitted to the hospital for the beginning of the next phase, since it packs a particularly potent punch. If there are no delays, however, she should be able to be home for Christmas. Please pray that that is the case.
- Shoshana's cancer treatment - that it would be effective, and that the side-effects would not be damaging. That she would be healthy and strong during her treatment, and not get any more infections.
- That Shoshana would be able to be at home as much as possible. It is definitely a strain on our family to be living in two places at once. All of us, especially Abigail, enjoyed having her at home very much. It would be nice to have Christmas with Shoshana at home.
- Continued strength for our family as we manage her care: for Elizabeth, Kristen, and me especially, but also for Abigail. Please pray that we would be able to remain healthy, and be given grace to deal with the strain on our minds, bodies, and spirits.