Lyric has been fever free since Friday.. so today they are taking him off the antibiotics and they will wait and see if his fever returns. His Hickman tube is fine.. nothing came back positive for infection with any of the tests, which is common apparently. So we may go home today or tomorrow depending on how he does. Otherwise he's feeling great.. he just wants to go back home. And so do I!
So this week he will have all his preliminary testing done to see if he's ready for his next round of chemo. Today he gets an echo.. and Tuesday he was supposed to have his bone marrow test.. but his blood counts are not back up high enough yet. So that may happen on Thursday. They want to repeat an MRI sometime this week and then Thursday he comes in for blood counts to see if they are good enough to start Induction 2 chemo.
This nurse practioner came in today.. I didn't even know what that was. But apparently they are a type of nurse that can do orders etc.. a step under a doctor I guess, but a step up from an RN?? She wanted to talk to me about this week and what to expect, as well she also heard Lyric was on some natural remedies and wanted to know what they were. So I went thru them with her. She then tells me he shouldn't be taking the active bacteria or the Vit D.. So she leaves and a couple hours later the Oncologist comes in and says I hear you are attributing his wellness to the natural stuff.... I said well I don't know for a fact obviously, but Lyric is a healthy kid. He has excellent food, and the remedies he is on I'm sure do good. She doesn't really disagree of course but continues to give me reasons why he shouldn't be on them. And the biggest reason??? Well natural medicine don't have everything labelled on their containers so they can't trust them. And of course that there aren't enough clinical studies done. Oh, but we do know that they are ancient remedies that modern medicine was derived from... SO I called Jane... she doesn't think what she has him on is going to hurt anything, of course she has gone to great lengths to make sure of that. So she is again going to look into her recommendations again just to make sure. Including contacting a colleague, a Naturopath that practices at Sick Kids in Toronto. So I am back at this point of what to do and to make sure everything is going to work well together. I did however say I wanted to keep him on the astragalus, she seemed ok with that although she is going to look into it a bit more. hehe... and I happened to have a clinical study up on the laptop at the time (from NCBI, the National Centre of Biotechnology Information... so an accredited site) about the amazing effects of Astragalus.. so she read it.. thought it was good. But she's still unsure at the effects it may have with his chemo. Ugggghhhhh.... this is so frustrating. It seems to me that a pretty SMART idea for them would be to have an Naturopath on staff, or someone that they confer with that knows about Oncology and Naturopathy....to link the two worlds. The oncologist says they go through this all the time with parents.. wow, this is definitely an area that needs more research. If I could I would do it myself!
Ok..ok... that was more of a rant. Sorry about that.
So I may have a few days at home and want to spend a day cooking lots of food and freezing into containers for us here.. among cleaning, getting some other things done and getting ready for the next 10 day+ induction.
Oh, and another thing the Nurse Practioner mentioned was that AML kids in the past usually live in the hospital for about 5-6 months cause they are always sick with infections... one she mentioned in particular is a Neutropenic Colitis called Typhlitis.. an infection of the bowel. They are living on antibiotics for months basically being so sick all the time from infection. She told me that he WILL become very sick, and unhealthy.. and that how he is now is uncommon but it's sure to come..... great, thanks. That was an uplifting conversation.
Ok, it's 3 p.m., and I need my next dose of caffeine... and my exercise walking up and down the stairs. hehe.
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wish the doctors were MORE knowledgable on the natural way to heal... its crazy they are so firm in the belief it is NOT good, when for eons its all there WAS... hope you get home soon!!! ((hugs)) deb
ReplyDeleteI so wish your doctors were more understanding, I had fabulous ones out west who were fully supportive of me joining naturopathy with their therapies... keep at it, I 100% believe it makes a difference. Sending you lots of love and positive vibes.
ReplyDeleteOh wow, how frustrating. What we need to realize is doctors are "out of business" if enough people turn to natural medicine - a proven solution for many ailments. Of course Lyric's condition requires chemical treatments, but what is so terrible about combining the two? Is the medical profession scared they won't get all the "credit" for any healing that takes place?
ReplyDeleteWith toxic chemo going through Lyric's system,
how can they possibly think that a natural, ancient remedy is going to harm him?
I agree with you... modern medicine should link up with naturopathy and work to combine the two. It might make a huge difference.
*blessings
I think it is a combination of pride and fear that gives these doctors their attitude towards natural medicine. They didn't study it, they don't know about it, so they are in foreign territory and that makes them nervous. And the fact that they don't want to be told anything they don't already know themselves, especially from a person outside their elite medical field. There are some out there who believe in combining both worlds, but there needs to be more, that's for sure. Don't lose heart Sarah, you're doing the right thing and the best thing for Lyric, and Jane is awesome and will do her research. Just keep showing those doctors your respect for their knowledge, while humbly and quietly showing them your determination to investigate and incorporate natural medicines into Lyric's routine and no doubt some of them will have to be convinced because he WILL NOT be as sick as they say he should be and they will wonder why??? Go get'em sister! Nancy
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