(Beware: This turned into a long post.)
We’ve been in hospital for a five nights so far. We were admitted on September 18th in the afternoon as Angelica’s nausea had taken a turn for the worse and her temperature seemed to be climbing and her toes looked really infected and she looked off enough that we thought she should get checked out.
While we waited for test results to come back in, her temp continued to rise and before long, we passed the threshold where they have to admit her. As much as this is not a good way to hang out as a family, her nausea had been off and on and more on than off for six weeks. It has taken its toll on Angelica not just physically, but emotionally as well. She has been seeming a lot more “down” emotionally and as she was feeling worse, her emotions were dropping even faster.
The good folks here at BC Children’s seem to really care about that, and our oncologist said that he didn’t want to send her home till she was actually feeling really good. The first course of action was to give her every anti-nausea medicine (or anti-emetic) known to man (well there are probably a few odd meds that exist elsewhere in the world). AND… this didn’t do much to help her feel better. She was still gagging at the mention of food and that led us to the possibility that the nausea was “conditioned”.
There are three types of nausea in cancer treatment. Immediate nausea is where you take a medication and it makes you throw up. Delayed nausea is where you take a medication and the effects of the drug on your body bring you to a place of eventually feeling sick and it can be a week to 10 days later. Conditioned nausea is where your brain attaches various mental triggers to nausea and you gag at the mention of (whateveritis).
As she was having a temperature, we had the usual blood cultures to see if she had an infection.
Angelica was able to sleep through the night, and even sit and watch tv for a length of time with no problems, but if we asked do you want (insert name of food or drink) and she would immediately gag and sometimes throw up. She did not eat anything (or at least keep anything down) for Saturday, Sunday or Monday. She is on an IV solution that has dextrose in it, but that is not the required nutrition that she needs and having her body empty of fuel only added to the feelings of despair.
Basically she needed to eat to feel better, but the thought of swallowing made her gag and throw up. On top of that, she didn’t have the emotional energy to make herself eat. The entire thing just became an avalanche that was just piling on top of her.
As the blood tests were coming back negative for infection, and because of the abdominal pain they took a stool sample to see if there was an infection in the digestive tract.
At a meeting with the doc on Monday afternoon, she said that she wanted a feeding tube. When she presented her opinion on wanting to try it, it was the first active role she had taken in her own health care in weeks. This alone was an encouraging sign. My opinion was either that she would hate it and it would provide the added incentive to make herself eat or that it would give her nutrition that would make her feel better and lift her spirits. Either way it was worth a try.
Patti and I switched on Monday night (she came in and I went home). Patti spent all of Monday night and all of Tuesday and all of Tuesday night, helping Angelica and carrying her emotionally (while also caring for a two month old). The tube went in on Tuesday, but they started with a milk based formula, and if you’ve followed this blog for a while, you would know we don’t do milk and Geli complained right away about a gut ache from the milk.
As the stool samples wern’t coming back with anything, but Patti saw that Geli was peeing a lot, Patti asked for a urine culture to look for a urinary infection…. which came back positive for yeast. (Yeast grows rapidly in the body when there has been antibiotics used, as the antibiotics kill of the normal human digestive bacteria, which leaves nothing to halt the growth of the yeast. Yeast in turn eats at stomach linings, digestive tracts, and messes up all kinds of normal body function.)
We had to wait an entire day for them to get the dietitian here and to get the non-dairy formula ordered and delivered. After 2 nights, Patti was ready for some sleep (Gelica was up almost all of Tuesday night having panic attacks and feeling abdominal pain and crying).
Patti and I switched back on Wednesday and we started the feeding tube with the right formula. The change wasn’t dramatic, but throughout Wednesday she started acting and feeling better. Patti and I, now confident that we should have asked a little harder about getting her on a pro-biotic earlier felt that we should now push the issue, and so we called for a meeting with our Oncologist to talk about some dietary supplements that would help heal her gut.
“Leaky Gut Syndrome” is where yeast or chemicals or other disturbances in the intestinal tract create slightly larger holes in the intestines. The intestines are designed to “uptake” minerals, nutrients, amino acids, and the like as they are digested and broken down. When the holes in the cell walls are too big, they can uptake chunks that are too large or not broken down enough and that causes an auto-immune response. Symptoms can be low grade fever, abdominal pain, nausea, and a lack of nutrition in the body, even when a healthy diet is being consumed. (basically that describes Geli)
Our medical team is amazing!!! They are very smart and have done a great job and are also very open to anything that we might add as long as it is not a known antidote to chemo. We asked about putting her on a pro-biotic, a dietary enzyme, zinc and a children’s multivitamin. There was a brief discussion about the pro-biotic because introducing bacteria when your immune system is suppressed can be problematic, but it was agreed that it was worth it.
So today (Thursday) she has been on the NG tube with the right formula for over a day, had an amazing sleep last night, has been up laughing and enjoying herself, has been able to eat a popsicle (baby steps), and most of all, her spirits are up. She is acting more like the girl that is determined to fight this. She’s not all there yet, but well on her way.
She starts her next round of chemo on the 28th (its delayed a week) and they are probably just going to keep her here till that is done to make sure that she is feeling a lot better. They agree that 6 weeks of nausea is enough and see as committed to getting her feeling better and feeling happier.
We still need:
– her toes to completely heal and for there to be no infection spread from those
– her emotions and her spirit to continue to be lifted
– her not to get an infection or illness while her counts are low
– for her digestive tract to completely heal so that the pain and nausea goes for good
Thanks to all, Jon.
