Childhood leukemia? - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#1 of 35 Old 09-09-2008, 11:00 AM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Please tell me anything you can about childhood leukemia. My brother's little girl, Kharma, was just diagnosed with leukemia. She just turned five. I don't know any more details- what kind, what treatments, etc, until they do some more tests. What are the treatments? What can they expect? What are her chances of making a full recovery? Also, her Mother had leukemia as a child, but recovered. Will this affect Kharma's outcome in a good way or a bad way? Please tell me anything you know about childhood leukemia, and please don't sugar coat it (too much). And is there anything I can do, as an Aunt who lives in the next state, 2 1/2 hours away?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#2 of 35 Old 09-09-2008, 12:10 PM
 
nalo's Avatar
 
Join Date: Oct 2005
Location: Seattle-ish
Posts: 2,587
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I can't provide much factual information because my family friend that SURVIVED childhood leukemia is just a few years younger than me so I was pretty young when he was sick but I can tell you what I know/remember. He had lots of chemo, spinal tap, not sure about radiation. Yucky, hard stuff. Lots of time in hospital. However, this was MANY years ago and I know the treatments just get better and better with fewer side effects. He relapsed once after remission as a child but also recovered from that and is now about 29 years old. His long term consequences have been stunted growth (he is just a small, petite guy) even after growth hormones he took after treatment. In addition, we believe it affected his overall intelligence although this is just our observation and may not be true. His brother is a very bright, "with it" guy and the one who had cancer is just....not. Perhaps this has nothing to do with treatment but something to consider I guess - making sure she is tracked very closely with her development and whatnot. He also was told he would not be able to have children but he did get his GF pregnant and their child has multiple birth defects - perhaps some kind of syndrome. Not sure yet. If there is any way they can harvest a bunch of healthy eggs from this little girl I would look into that or at least ask about this issue. As an aunt I think, if you have the financial means, you can provide lots of lots of distractions for everyone involved. Send books, magazines, toys, art supplies, etc. to help pass the time in the hospital and give her something to look forward to during the tough times - always expecting a fun something from Auntie, yk? Also, just lots of support to the parents via phone call check ins, e-mails, sending them some distractions as well and visiting whenever you can. I am very sorry you all are facing this tough road but chidhood cancer treatment is really amazing and I have every faith she will make a full recovery. Hang in there!!!

Still a sleepy mama to my fabulous 2 year old girl
nalo is offline  
#3 of 35 Old 09-09-2008, 12:33 PM
 
pibblestiltskin@ma's Avatar
 
Join Date: Jul 2007
Posts: 471
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm so sorry! My thoughts are with your little niece and the entire family.

I don't have first hand experience, but I know some people in my extended circles who have gone through this. The treatment is hard, two - three years of chemo, steroids etc. As the pp mentioned there are risks involved with growth and development - this will likely be monitored during and after treatment. There are many online resources and support groups.

As far as what you can do, be there to listen and support the family. If you are able to visit, or can help arrange with local family and friends there are things that might make it easier for them. Having meals ready after a long day of appointments (can be frozen or dropped off (fresh) day of). Arranging to have yard work, snow shoveling, etc done. Offering to field phone calls or keep others informed - at the end of the day they might be too exhausted to update several people. Helping out with other kids if there are any - a special long weekend with Auntie? I think that the illness/treatment is very hard on siblings who lose attention, have to adapt their lives etc. Of course lots of little things to do, books, puzzles, art stuff (don't forget mom/dad who will be spending lots of time waiting. Gift cards for whatever coffee place is convenient to the hospital so they don't have to worry about having cash?
pibblestiltskin@ma is offline  
#4 of 35 Old 09-09-2008, 12:38 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Unfortanetly I do know about childhood leukemia. The first thing they will determine for your niece is what type of leukemia she has. There is basically 2 types of leukemia. ALL (acute lymphomic leukemia) it is the most common form of childhood leukemia and actually has a great success rate. AML (acute myelonomic leukemia) a rare type of childhood leukemia usually found in adults, and has a poorer success rate. Within those two types, there are even more strains. I don't know much about ALL, but for example with AML there is I believe 15 different types. My 5 year old nephew is currently undergoing treatment for AML his strain is type 5. (unfortanetly one of the worst kinds of leukemia to get).
He was first diagnosed two years ago... so I'm trying to remember exactly what tests they performed and to be honest I can't remember exactly. So I'll go by the tests they did in May when he relapsed. First of all they would do a blood test, your neice has already under gone that test. Then they did a bone marrow biopsy, thankfully for little children they put them to sleep and then insert a huge needle into their pelvic bone. It usually takes at least 24 hrs to get the results back, to figure out the type of cancer exactly might take a little longer, I think they did the biopsy on Caiden on the monday pm and we found out wed pm that it was the AML that had returned. They probably will check to see if their is cancer in her spinal column. Once they know the exact type of leukemia they will then sit down with her parents with a course of treatment. Each type of leukemia has a different schedule of treatment and each child is different so I couldn't even guess to tell you what they will set out for your little niece.
Big Big hugs going out your way. I know how scary it is first hand. Please PM me if you ever need to discuss anything or just talk to someone who does understand.

As for what you can do. Right now... let them know that you love them and that you will stand by them for whatever they need. Perhaps you can start collecting $ for them as it gets very very expensive. I would suggest limiting the amount of toys you buy as they get a lot of them. But nice pj's are always welcome, as well as books and movies.
Right now you are in shock, and thinking the worst. Just know that leukemia does actually have a high success rate, especially ALL, so try not to think the worst. As for what causes leukemia from the talks I have had with the oncologists here... they don't really know what caused Caid's AML.

Oh another thing I thought of, when Caid relapsed I seriously thought of shaving my head to raise funds as well as showing him that I was standing by him. But when I asked him, he told me "No aunty, I don't want you to be sick too." If I lived farther away, I would have definetly shaved my head.

sorry this is a book. I guess I just have a lot to say about this subject. And like I said... PM if you need someone to talk to.

Pam, momma to Sofie Avye Seth
minsca is offline  
#5 of 35 Old 09-09-2008, 12:47 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh I just thought of something else... you can tell them about caringbridge.org . It is a website that can help them let everyone know exactly what is happening but they don't have to phone everyone.

Pam, momma to Sofie Avye Seth
minsca is offline  
#6 of 35 Old 09-09-2008, 12:51 PM
 
nalo's Avatar
 
Join Date: Oct 2005
Location: Seattle-ish
Posts: 2,587
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
A few more things came to mind. Can you set up a "caringbridge" or similar website for the family and get it all ready so they can post updates about how things are going and friends and family can write notes of support. These are free websites for people undergoing medical stuff who want to stay in close contact with loved ones. You could also start planning now for a fundraiser - raffle, dinner or whatever. Their bills are going to be high and I'm sure they will also be losing income from missed work so cold, hard cash will be very helpful to them. Soliciting donations of gift certificates for gas, groceries, etc. would be awesome. Also, if you or someone else could offer to be in charge of organizing any volunteers for the family (i.e. a friend offers to mow the grass once a week, an uncle offers childcare for other LO's once a week for a few hours so parents can try to recharge a bit with alone time, get various people to offer to bring meals like a PP said, etc.) They need their whole, extended community involved. And, I agree with working really hard so that the other kids don't totally go by the wayside. Also, their mental health should be attended to closely. They may do better than everyone else or they may be secretly scared their sib could die any day, yk? I hope you continue to get some good feedback here. Big big hugs.

ETA: minsca and I had the same idea at the same time! sorry for the repeat info.

Still a sleepy mama to my fabulous 2 year old girl
nalo is offline  
#7 of 35 Old 09-09-2008, 03:48 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
I hate to ask like this- will being on Medicaid (in MA) affect the kind of care Kharma will get? I've been on Medicaid before and in my experiences, Medicaid patients don't get the best of care. My family knows this well- my Grandfather is currently termanilly ill with lung cancer and on Medicare, and he was not getting the best of care until my family started paying for it. We don't have any money left over to spend now, with Kharma. My brother and his girlfriend both work minimum range jobs and schedule hours to save money on childcare for the kids (Kharma's brother, Zen, just turned three.) They're already broke. Will there be other money options or funds available, if it comes to that?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#8 of 35 Old 09-09-2008, 04:19 PM
 
nalo's Avatar
 
Join Date: Oct 2005
Location: Seattle-ish
Posts: 2,587
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Well, assuming they are properly hooked into the system which it sounds like they are then she should have no problem getting treated, in general. I mean, they have to pay for her treatment. However, they probably won't have much choice when it comes to which hospital, doctors, etc. like they would if they had private insurance. Not living in MA I can't really speak to that system though. They should speak with the hospital financial planners ASAP once they know where their LO will be treated and start to get an idea of what they're looking at - what will be covered, what will be out of pocket, how to set up a payment plan, etc. Any reputable hospital will also have a social work department so make sure they get hooked in with that right away because they will be able to answer many of the questions you are having about alternative community resources and whatnot.

Still a sleepy mama to my fabulous 2 year old girl
nalo is offline  
#9 of 35 Old 09-10-2008, 08:26 AM
 
Strong Mama's Avatar
 
Join Date: Feb 2006
Location: in love with my hubby
Posts: 2,978
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
She is beautiful. I have sent her distance healing through her photo. I pray that she beats this ugly thing. As a aunt the best thing you can do is just be there. Be there when they ask and really need you to, if you can.Or if you cant be there, listen. Listen on the phone when they cry or just talk to you about things, that is really all you can do.

Me and my wonderful husband serve God. Blessed with twin girls 2/11/11. <3

Strong Mama is offline  
#10 of 35 Old 09-10-2008, 09:17 AM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Update- they still don't know if it's ALL or AML (did I get the terminology right?), but they will "begin treating it aggressively". She also has had a problem with, something about spinal fluid leaking up behind one of her eyes, making one of her eyes turn inward. I don't remember what it's called- some term with abbout 50 letters in it. They don't know if that's a seperate issue or related to the leukemia, and that's why she was originally in the hospital. The doctors need to drain fluid from her spine (already did once, last month) and it relieves the pressure of spinal fluid behind her eyes, before they start chemo and the doctors found a "bump" on her head, which they would like to biopsy before they start chemo. That part scares me- issues involving spinal fluid pressure behind her eyes, leukemia and now an unkown bump on her head? I pray they're not all related.

I made a mistake. Yesterday, I kept writing that she's four. I've had several friends and family tragedies in the last couple of months and I missed her birthday. She just turned five. I can't believe I missed her birthday. : (In my defense, she's my brother's girlfriend's daughter, so I've only known her for two years and, living 2 1/2 hours away, I'm haven't yet established the bond with Kharma and Zen that I have with my sister's children, who I've known since birth.) But she's five, and she just started Kindergarten. Bad Aunt.

Anyways, hopefully I'll have another update soon, preferably a "the bump is not anything to worry about" update.

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#11 of 35 Old 09-10-2008, 10:27 AM
 
Love my 2's Avatar
 
Join Date: Feb 2003
Location: CA......Where next?
Posts: 1,097
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by harleyhalfmoon View Post
I hate to ask like this- will being on Medicaid (in MA) affect the kind of care Kharma will get? I've been on Medicaid before and in my experiences, Medicaid patients don't get the best of care. My family knows this well- my Grandfather is currently termanilly ill with lung cancer and on Medicare, and he was not getting the best of care until my family started paying for it. We don't have any money left over to spend now, with Kharma. My brother and his girlfriend both work minimum range jobs and schedule hours to save money on childcare for the kids (Kharma's brother, Zen, just turned three.) They're already broke. Will there be other money options or funds available, if it comes to that?
In CA, there is a program called California Children's Services that covers most of the expenses. Look into what your state has available.
Sending hugs and healing energy you family's way.
Love my 2 is offline  
#12 of 35 Old 09-10-2008, 01:27 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
s

I'm so sorry your family has to deal with it. I know that they usually check to see if the leukemia has spread to the spinal column. If it has then it's usually not a great sign. The problem with leukemia is that the cancer has already spread throughout the entire body. Like a lymphomatic cancer. I don't know where the bump is, but it could possibly be a lymph node that has swollen to a gigantic size. If it is a lymph node it probably is the leukemia, it will decrease in size and disappear within a week or two of chemotherapy being started. If it isn't a lymph node, then I honestly don't know what to tell you, just many hugs and thoughts and prayers going your way.

I would suggest getting the book "Childhood Leukemia: A guide for Families, Friends and Caregivers" by Nancy L Keene. It is heavy reading, but really a must to understanding what leukemia is and isn't, plus it goes into all the different types of treatment, the different drugs in the chemotherapy, side effects, ect ect.

Before deciding on how they will treat her though, they will have to figure out if it is AML or ALL. As soon as they know that, they will start the chemotherapy that day. Or the day after. Have they placed a central line or Broviac yet? For that she will have to undergo surgery to place either one. A central line is a lot easier as then the Broviac to deal with but they are essentially the same thing. They get rid of the need for the children to have an IV in their arm. Plus it gets rid of all the daily/weekly need for needles as they can get blood straight from the Brovi or CL. It is basically a tube that is inserted into the vein or artery near the heart.

I'm trying to remember what else they did right at the beginning. There was echocardigrams, CT scans, many pokes and needles.

I don't know if this will put your mind at ease or not, but in regards to the chemo. Usually they pump the little kids full of anti naseau medication ect, so some kids aren't sick from the chemo, some still react though. The hair usually takes 2-3-4 weeks after chemo starts to fall out. Chemo itself is carcengenic so for your little ones I would suggest that they not be in the room while little K is recieving chemo.

Thinking of you lots today.

Pam, momma to Sofie Avye Seth
minsca is offline  
#13 of 35 Old 09-10-2008, 02:44 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Quote:
Originally Posted by minsca View Post
Before deciding on how they will treat her though, they will have to figure out if it is AML or ALL. As soon as they know that, they will start the chemotherapy that day. Or the day after. Have they placed a central line or Broviac yet? For that she will have to undergo surgery to place either one. A central line is a lot easier as then the Broviac to deal with but they are essentially the same thing. They get rid of the need for the children to have an IV in their arm. Plus it gets rid of all the daily/weekly need for needles as they can get blood straight from the Brovi or CL. It is basically a tube that is inserted into the vein or artery near the heart.
I don't think they did a Broviac yet, but I'm not sure. My brother calls my Mother on the phone from the hospital(which is 45 minutes from where my brother and where my extended family lives). My Mother then calls everyone to give an update. It's very frustrating, but my brother doesn't have the time or the cell phone to call me the next state over or to call each family member individually. My Mother said something about checking her heart or testing her heart, and they were gonna do it today, but I don't remember exactly what she said. Too much information flying at me at the time. Sound like something they do before they do a Broviac?

Quote:
Originally Posted by minsca View Post
I don't know if this will put your mind at ease or not, but in regards to the chemo. Usually they pump the little kids full of anti naseau medication ect, so some kids aren't sick from the chemo, some still react though. The hair usually takes 2-3-4 weeks after chemo starts to fall out. Chemo itself is carcengenic so for your little ones I would suggest that they not be in the room while little K is recieving chemo.
Do you mean for my kids and the cousins not to be in the room while they're actually giving chemo or do you mean my kids and the cousins not go near her for the duration of the chemo, however long that takes (eample: 8 weeks if she has chemo for an 8 week period)?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#14 of 35 Old 09-10-2008, 05:31 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by harleyhalfmoon View Post
I don't think they did a Broviac yet, but I'm not sure. My brother calls my Mother on the phone from the hospital(which is 45 minutes from where my brother and where my extended family lives). My Mother then calls everyone to give an update. It's very frustrating, but my brother doesn't have the time or the cell phone to call me the next state over or to call each family member individually. My Mother said something about checking her heart or testing her heart, and they were gonna do it today, but I don't remember exactly what she said. Too much information flying at me at the time. Sound like something they do before they do a Broviac?
That sounds about right. My memory is a little foggy right now, and I might be confusing two tests up. But I think the echo (which is basically an ultrasound of the heart) was just before they put the broviac in. They also do a lot of those tests to figure out what the baseline the child is at. The chemo is really difficult on their little bodies and it can really damage their heart/liver/kidney's. So they need to know where they are starting from to properly assess them in the future.


Quote:
Originally Posted by harleyhalfmoon View Post
Do you mean for my kids and the cousins not to be in the room while they're actually giving chemo or do you mean my kids and the cousins not go near her for the duration of the chemo, however long that takes (eample: 8 weeks if she has chemo for an 8 week period)?
I mean for your kids and the cousins to not be in the room while they are actually giving her the chemo. Depending on what type of leukemia she will have will determine how long it takes. Some ALL patients are basically outpatients that only receive chemo for a day or two. My nephews chemo was a lot more aggressive so he had chemo every day for 7 days. Then they waited for the chemo to basically kill his entire blood system and for his body to grow it again, before doing another 7 day chemo treatment. I only kept my children away during those 7 days of chemo.
It is so toxic that my eyes would burn being in the room with Caiden, and when he peed it out, you could just smell the toxicity of it. When he wasn't recieving chemo my kids are there a lot. We just are really really strict about washing hands and cleanliness. So much so that my dd1 is always washing her dolly's hands.

If you are confused about anything else just let me know. If I don't know the answer I will ask someone who does.

Another

Pam, momma to Sofie Avye Seth
minsca is offline  
#15 of 35 Old 09-10-2008, 09:45 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Update- the "bump" is an unrelated cyst and they drained it when they did the Broviac this afternoon. The spinal fluid behind the eye is a completely different issue, which they will have to treat, but it's not related to the leukemia. It's a bunch of long, long words, and it's most common for women in childbearing age to get- pretty much unheard of for small children. The leukemia itself is the ALL kind and they started chemo immediately after putting in the Broviac. (Is that the usual, to start immediately?) I don't know how often she will be getting chemo, but as soon as they're done doing all the testing, she will be moved to the hospital in their hometown, instead of so far away. Also, she's a real girly girl. When her hair starts falling out, they're gonna get her a Hannah Montana wig. Maybe I can get her some really pretty hats, too?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#16 of 35 Old 09-10-2008, 10:09 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh that is good news. At least as good as something as awful as leukemia can be. I don't know tons about ALL, but it is very very common to start treatment ASAP.
The nice thing about ALL is, it is highly curable. The bad thing about ALL is usually it is a long treatment, the chemo is given over a couple of years I think. I don't know much about ALL treatment to be honest. I didn't read over that section of the book.


That is great news that she will be able to do most of her treatment not to far from her home. I totally would get her cool looking hats. Their heads are so sensitive to the sun, that hats are essential!

Pam, momma to Sofie Avye Seth
minsca is offline  
#17 of 35 Old 09-11-2008, 12:18 AM
 
muse's Avatar
 
Join Date: Apr 2002
Location: here, now
Posts: 2,407
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi there. I work with children with cancer in a children's hospital. I'm so sorry to hear about your niece and her diagnosis.

You've gotten some great info here, so i won't go into any more about leukemia itself.

One thing I would look into is what kind of support your niece is getting at the hospital; most large hospitals have a Child Life department with professionals who help kids and families cope with the hospital experience. In the hospital I work in there is also a music therapist (that's me), art therapist, social workers and psychologists, all focused on helping the child and/or siblings/parents cope emotionally through treatments. I hope that there is good support for her there.

BTW, the majority of children I work with are on medicaid or the equivalent here, and they are getting excellent treatment. From what I've heard and seen children in general get much much better treatment than adults, but i'm not sure how much that differs state to state.

In terms of you supporting her, wigs/bandanas/cool hats and all kinds of fun stuff to keep her busy in the hospital (CD's, DVD's, books, art supplies etc) and at home are great. Also just keep in mind that this family will need support (emotional and practical) for a long time. And don't forget yourself, you're coping with this difficult news too.
muse is offline  
#18 of 35 Old 09-12-2008, 08:32 AM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Another update... Apparently the "bump" on her head is suspected to be related to the leukemia and they will be doing surgery to remove it. I finally talked to my brother (I'd been getting my info relayed through our Mother) and he seems to be doing okay, considering the circumstances, but he's so emotionally exhausted that he can barely remember his own name. He's gonna continue working and taking care of Zen (the little brother) and his girlfriend will be staying in the hospital with Kharma. Kharma will stay in the hospital for two or three weeks, and then, probably be moved back to the hospital in their area to continue. She'll have chemo for 8 weeks and then they'll work from there. If it gets rid of it, she'll have occasional "maitainence chemo", as my brother puts it, for the next two years. Sound about normal?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#19 of 35 Old 09-12-2008, 11:39 AM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Yes that sounds normal for ALL. Basically they want the first round of chemo to put the cancer into remission. The "maintenance chemo" is just to kill off any remainder cancer blasts that are in the system. I want to say that as long as the cancer blasts are below 5% then it is considered remission. However please don't quote me on that.
Not great news about the lump though. So sorry to hear that
I'm sure your brother is still in great shock, as I'm sure you are as well. The shock goes away, in about 2 weeks from now it will become day to day life. Not a great life, but a part of what life is for your family.
Keep us updated! I think of your family all the time. I really would suggest they do a caringbridge site or something similar. Then everyone can be updated at the same time without confusion. Plus it is highly theraputic to just write it out.
How are you doing though?

Pam, momma to Sofie Avye Seth
minsca is offline  
#20 of 35 Old 09-12-2008, 02:35 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Me? I'm frustrated to no end that I can't be right there and even if I was, there'd really be nothing I could do. I'm gonna suggest Caring Bridge when I go see my brother and his little boy tomorrow, but I don't know if that will be possible- he has sporadic internet use and I'm the only one in the family that's really online all the time. If I get a chance, I'm gonna ask my brother if he minds if I set up a website or something. Not sure how or exactly what, though, and I don't know how he'll feel about it, so maybe not.

I'm more worried about my kids. At the beginning of the year, my Grandfather was hospitalized, diagnosed with lung cancer ad various cancers throughout his body, put on chemo, taken off of chemo because it wasn't working, and told that he most likely won't make it until Christmas. We only told the kids about him about a month and a half ago, when it became inevitable. I don't know how they're gonna take it when they're told about Kharma, because in their experience, people die when they get cancer (we also have some family members who the children didn't know who have died because of cancer throughout the years). My kids might panic, but we will also be seeing my other neice (sister's daughter) tomorrow and my sister has told her everything, so one way or another, my kids will find out tomorrow. I hope they don't panic or take it too bad.

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#21 of 35 Old 09-13-2008, 09:50 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
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?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#22 of 35 Old 09-13-2008, 10:22 PM
 
nalo's Avatar
 
Join Date: Oct 2005
Location: Seattle-ish
Posts: 2,587
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Still a sleepy mama to my fabulous 2 year old girl
nalo is offline  
#23 of 35 Old 09-17-2008, 08:37 AM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
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.

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#24 of 35 Old 09-19-2008, 01:42 PM
 
minsca's Avatar
 
Join Date: Jun 2007
Posts: 1,699
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Pam, momma to Sofie Avye Seth
minsca is offline  
#25 of 35 Old 09-29-2008, 05:08 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
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.)

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#26 of 35 Old 09-29-2008, 06:07 PM
 
mbravebird's Avatar
 
Join Date: May 2005
Location: Virginia
Posts: 2,010
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mama to two sweet boys, a 7yo superhero.gif and a toddler coolshine.gif.
 

The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift. - Albert Einstein

mbravebird is offline  
#27 of 35 Old 09-29-2008, 06:23 PM
 
Strong Mama's Avatar
 
Join Date: Feb 2006
Location: in love with my hubby
Posts: 2,978
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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))

Me and my wonderful husband serve God. Blessed with twin girls 2/11/11. <3

Strong Mama is offline  
#28 of 35 Old 09-29-2008, 09:41 PM - Thread Starter
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,837
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
Quote:
Originally Posted by mbravebird View Post
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.

Quote:
Originally Posted by Transitions View Post
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.

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#29 of 35 Old 09-29-2008, 11:03 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,213
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.


Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#30 of 35 Old 09-30-2008, 02:32 AM
 
Aurorah's Avatar
 
Join Date: Jan 2005
Posts: 139
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by harleyhalfmoon View Post
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.
Aurorah is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off