Childhood leukemia? - Page 2

[kblackstone444]

Quick update...

The doctor's were gonna remove the "bump" on Kharma's head, but decided not to remove it, but to treat it with radiation instread. I thought chemo was radiation? Is there a difference between chemo and radiation?

[nalo]

I am not very knowledgeable as to the difference but radiation is delivered to the body through wave lengths basically (like an x-ray or something I think) and chemo is delivered as an actual substance into the body.

[kblackstone444]

Just a quick update...

Chemo's really rough on her little body. She's had a temp of 104, nausea and vomiting since then, can't keep any food or drink down and is pretty much completely fed on IV fluid's the last couple of days. I don't know how they expect her to do this for 7 more weeks.

[minsca]

Sorry it has taken so long to get onto MDC. I've been down with Caid and his family this week.
There is a big difference between radiation and chemo. In the simpliest terms, radiation is a big xray that can target a specific area. It works well in tumors as it can just destroy a certain area without affecting other areas. Which is probably the reason why they would use radiation for the bump on K's little head.
Chemo is basically a cocktail of different drugs. Some come in pill form, others come through the Broviac or IV. Chemo has the lovely side effects of making children really sick. Caiden has been lucky in that he hasn't been too sick. Though this time around he has been. Many times his mom has found him curled up around the toilet in the am. It is really hard to watch little children sick.
Anyways I have to run, dd2 woke up.

[kblackstone444]

Not a good update...

At first, the chemo was working really good, really fast, on my neice, but now it's not working very well and now it's spread to her central nervous system. What exactly does this mean?! I know it's not a good thing and they are regularly flushing her spinal cord with chemo and doing a spinal tap weekly to make sure the cancer doesn't spread to her brain, so I know it's very, very serious, but what exactly does it mean, that the cancer has spread to her central nervous system? Does anyone know? Does it mean that the chemo is not working at all? Or that her chances of survival are drastically lower now? (Please don't candy coat it too much, even if it's a bad, bad thing and means she could be handicapped... or worse. As bad as it sounds, I need to know exactly what we're dealing with here.)

[mbravebird]

I'm so sorry to hear your news. I'm not sure what the answers to your questions are, but it sounds like it's difficult. I couldn't pass by without mentioning that increased melatonin has been found to suppress cancer in some patients. Melatonin is produced at night as long as all lights are out, even nightlights. Is your niece able to do that? Or she could also take supplemental melatonin if she's not able to turn out the lights (like when she's in the hospital).

Here's a link to explain more:
http://www.lef.org/protocols/prtcl-027d.shtml#melatonin

Hope this helps. I know all the info can be overwhelming, but I couldn't pass by without mentioning it, just in case it's useful.

[Strong Mama]

Oh no, I have been checking this for updates, I was hoping for a much better one than this. I don't know what that means, but it really doesnt sound good, to me. Maybe minsca has a few answers to your questions. I am shedding tears for your precious beautiful niece, I am so, so sorry ((HUGS))

[kblackstone444]

Originally Posted by mbravebird

I'm so sorry to hear your news. I'm not sure what the answers to your questions are, but it sounds like it's difficult. I couldn't pass by without mentioning that increased melatonin has been found to suppress cancer in some patients. Melatonin is produced at night as long as all lights are out, even nightlights. Is your niece able to do that? Or she could also take supplemental melatonin if she's not able to turn out the lights (like when she's in the hospital).

Here's a link to explain more:
http://www.lef.org/protocols/prtcl-027d.shtml#melatonin

Hope this helps. I know all the info can be overwhelming, but I couldn't pass by without mentioning it, just in case it's useful.

Thank you. I'll pass this info to my brother.

Originally Posted by Transitions

Oh no, I have been checking this for updates, I was hoping for a much better one than this. I don't know what that means, but it really doesnt sound good, to me. Maybe minsca has a few answers to your questions. I am shedding tears for your precious beautiful niece, I am so, so sorry ((HUGS))

I would love for Minsca (or anyone else with this kind of experience) to come online with some answers. Unfortunately, she's dealing with the death of her nephew who just passed away because of Leukemia, so this probably isn't a thread she'll be wanting to hang around on for a while. (But if you're reading, Minsca, my thoughts are with you and I'm very sorry for your loss. )

I do have a difficult question for anyone who has any experience with any gravely ill children, with Leukemia or any other disease. My brother and his girlfriend talked to the doctor again today. The doctor told them, "You need to be prepared for the possibolity that this may be terminal for Kharma." That's an exact quote. The doctors wouldn't say that unless they were strongly suspecting that would be the eventual outcome would they? Would they say something like that and scare the parents like that if they thought they could make her better, or only if they thought that it really would be terminal? I never thought I'd be talking about a possibly terminal 5 year old family member. It hasn't completely hit me yet. I'm hoping that someone will tell me that, no, if there's any possiblilty at all that it could be terminal, then they tell the parents, but I need to know if that would mean that they're expecting her not to make it. And if it means even worse if they're putting that out as a possibility when she's only been diagnosed thrtee weeks ago.

[sbgrace]

http://www.marrow.org/PATIENT/Undrst...LL_/index.html
Reading this I think probably her response (if they didn't achieve remission yet) and the spread to the central nervous system puts her in the high risk category which would have worse outcomes. But still ALL over-all is 80% curable.

[Aurorah]

Originally Posted by harleyhalfmoon

At first, the chemo was working really good, really fast, on my neice, but now it's not working very well and now it's spread to her central nervous system. What exactly does this mean?! I know it's not a good thing and they are regularly flushing her spinal cord with chemo and doing a spinal tap weekly to make sure the cancer doesn't spread to her brain, so I know it's very, very serious, but what exactly does it mean, that the cancer has spread to her central nervous system? Does anyone know? Does it mean that the chemo is not working at all? Or that her chances of survival are drastically lower now? (Please don't candy coat it too much, even if it's a bad, bad thing and means she could be handicapped... or worse. As bad as it sounds, I need to know exactly what we're dealing with here.)

Hi there.. My daughter was diagnosed with ALL in Feb of this year, so I am familiar with a lot of what your niece is going through.

What it means is that the leukemia cells are present in the spinal fluid.

As far as your other questions, I'm unclear as to when they found the cells in the spinal fluid -- was it during the tests they did at diagnosis? Was her spinal fluid clear at diagnosis, and now it's showing leukemic cells? According to the time line in which you've posted here, she should still be in the induction phase. Induction is sort of like a full-on assault of the immune system (via the chemo), attempting to obliterate the cancer cells, and I wouldn't expect the spinal fluid to be involved at this point.

As far as -what this means-, there are all sorts of factors the doctors use to give a prognosis. CNS involvement (the cells showing up in the spinal fluid) is definitely one of the things they'd use to indicate a poorer prognosis, but it by no means is a finality.

Your brother needs to ask the doctors at all stages and when anything changes, "How does this affect the prognosis?" I say this because your niece, again, will have a list of different factors that are unique to HER that change the prognosis overall.

I'm sorry this is affecting your family. I hope for good news.

[T&D2005]

Beating Cancer with Nutrition

I know nothing is "the cure" and I am no doctor.. however, my dad had cancer (not leukemia) and I bought this book called Beating Cancer with Nutrition by Patrick Quillin. Regardless of what therapy she does, there are some good points to consider in nutrition and how important maintaining a healthy eating style and keeping healthy weight during this chapter in her life. I learned a lot from this book and passed on the info to my dad who would never read it. Between chemo, radiation and healthy eating.. he is still around 3 years later. Good luck to her and your family.

[kblackstone444]

Kharma's MySpace page...

I've made a MySpace page for Kharma. Please add her for your friend and feel free to suggest to your friends adding her if they want. The more people who know about her, the more people can help her.

Prayers For Kharma

[Strong Mama]

I am going to add her! My name is Joy on there, so tell her Hi from me and I am always thinking of her.

[AJandElijahsmommy]

I don't know much about it but I read somewhere that Mothers milk dramatically helped a elderly man with Lukemia. If you know a donor, I'm sure it couldn't hurt to try.

[minsca]

Sorry HarleyHalfMoon, I haven't been online for a long time as you already made mention of. I probably have nothing new to offer you, but here is what I do know.

Right now I'm actually with the guru (at least my guru) of cancer knowledge. So I just asked Lisa your question. Her answer is that they will they will have to give chemo to the spinal column on top of regular chemo for ALL. I guess 10% of leukemic patients this occurs in. It does mean that the chances of recovery are less. But it is treatable.

As for what the doctor said. I don't want to be pessimistic so I'm going to say that all dr's are different and some dr's want to prepare their patients for the worst. But honestly we didn't actually hear to prepare ourselves for Caiden's passing until the second relapse happened. Though we all "knew" when he relapsed the first time that his chances of survival were slim. Because of that I'm surprised that the drs are already saying that. To be honest, from what you have told me about your neice all the stats (except for the spinal column cancer) are in her favor. And even that doesn't mean its not curable.
I know its hard but try to be positive. But at the same time, live your life without any regrets, so if the worst does happen... well you know what I'm saying.
I'm sure this post is very disjointed, for that I apologize.
You and your family is in my thoughts.
Take care