It seems like people get on either side of this issue and stay there - like it's black and white. From my perspective, as a mother of a person who potentially has much to gain from stem cell therapy and an intelligent person, I can tell you there is nothing self evident about it. It's not a no-brainer to do it or not to do it. I have been criticized for not raising funds to take Ellie to China and get the treatment straight away. And on the other hand I was told I was nuts to even be considering it in any time under 30 years.
I was asked by Katy to provide some information on stem cell therapy and that is what has prompted this post. I wish it were the magic bullet any parent of a disabled child is looking for. Some surefire way to take away the disability, pain and uncertainty. I am pretty sure though that there are no such magic bullets in life but rather only experiences that deserve paying attention to in order to learn and become better than we are.
That said, we have been standing in the wings waiting for a significant breakthrough on the stem cell front where Ellie is concerned. It strikes us that within Ellie's lifetime current techniques will be further refined such that the improvements will be far greater than the 25% that seems to be a common number in the blogs of those undergoing the treatment.
The big question is how long it will take for medicine to get to this point? Our biggest concern is that the long term affects are not really known. It's comforting to see that a US study shows that the umbilical cells appear to be safe and have no known side effects ... but at the same time our instincts say wait a little longer and track some of the existing patients and see how they get on.
Here in the US, it seems as though the public mood is behind stem cells/against the current administration and many states have big research budgets & programs underway so I'm hopeful we will start to see some breakthroughs in the next few years. The problem is, stem cell treatments will likely be highly regulated by the FDA and it will take even longer for the treatments to hit the mainstream in the US than in other countries.
We spoke with Radar in Malibu CA/Bahamas and also Dr. Steenblock who does the umbilical transplants in Mexico. We came away with the same impression that they were both somewhat fly by night operations and didn't fully trust them. Also neither seemed to publicly track patients post-op as chinastemcells seem to be doing. China seems to be quite far ahead and they are using umbilical cord cells.
Below are a list of blogs that we have been following.
http://stemcellchina.com
http://stemcell.taragana.net/ this blog is great for tracking stem cell news reports
http://www.stemcellschina.com/blogs/Kendra/
http://blog.brookebarels.com/
http://www.stemcellschina.com/blogs/Gabor%20cp/
http://kimpoor.blogspot.com/
http://www.stemcellschina.com/blogs/Maya/
http://lukasnguyen.blogspot.com/
Dave found this clinic in Germany. They are not using cord blood but adult stem cells from bone marrow. XCell Center - Regenerative Medicine
http://www.xcell-center.de/index.php?id=&L=1
Beike Bio-tech and stem cell processing at
http://www.beikebiotech.com/index.php?option=com_frontpage&Itemid=1
So what do you think? Is it safe? Does the benefit, at this point outweigh the risk?
Any research studies or blogs or websites that any of you lovely readers out there would like to share on this topic will be greatly appreciated.
13 comments:
Stem cells are not something I would consider. 1) I would never do any experimental treatments, I am sick of being the "first person with CP we;ve had do X". and 2) Disability is a huge part of who I am. I think it was over on the ouch blog that Dave said "disability defines me but not confines me". It's my culture and to me it is valid and right. I wouldn't do anything to lose that.
That said, I am sure that my parents would have given it serious consideration if I'd been younger.
And the way I make all treatment decisions comes down to - can I live the way I am now and if no can i live with the treatment.
Oh and I don't know if you are aware of these blogs but www.caringbridge.org/visit/laurenashley is someone who had stem cells for a TBI
www.caringbridge.org/visit/shawnaweil is someone who is just about to go across to China.
I hope my earlier comment didn't come across as preachy, it was just meant to be my opinion.
Hi Kathryn,
Mete did a great post recently about all the greys (treatment wise) and I agree that this in one of them. From what I have researched - no, I'm not willing to take the risk. The beneifts don't outweigh the risks for us, not to mention the incredible financial burden. Too new, too uncontrolled, too unresearched and too far away.
I do also understand what Emma is saying on a much smaller scale. I'm very short sighted but am eligible for laser surgery and yet I don't want it. Wearing contact lenses is so much of who I am. It just doesn't feel right.
Jacqui
Emma - I agree- I don't want to do any experimental treatments on Ellie either. That is why we are holding off. And I understand the point you and Jacqui both make about being the way you are and that being perfect in an of itself. I get that. I feel very protective of Ellie and where she is at. I would hate her to lose any more function and will not allow her to be harmed in any way.
But I am reminded of Leah Coleman's story (the inspiration behind the Signing Time videos). She was born deaf but a year or so ago became eligible for a cochlear implants. Her mother asked her if she wanted it because the deaf community has a very strong culture and it wasn't a given that she would automatically want to change that. But when she asked Leah, Leah responded with a very enthusiastic Yes!
So what if one day stem cell therapy becomes as accepted as cochlear implants? What if Ellie could stop having head aches from her shunts? What if she would gain better use of her hands? She is quadraplegic at the moment, doesn't talk or walk or sit or eat on her own. She has horrible reflux that is painful to her. And, you know what, she is cognizant of all of that.
So that's what I struggle with. Not so much now because Dave and I truly don't feel the stem cell thing is safe. But Ellie is only 4. It may very well become safe by the time she is 20 or 30 or 15. What would she want if given the choice? And if it becomes accepted practice we will give her the choice. Not because we don't love her and rejoice in her the way she is, but because if there is such a choice to be encountered shouldn't she get option to decide if she can?
What if she doesn't reach that level of cognition and stem cell therapy becomes tried and true? Then as parents are we irresponsible not to get it for her?
Does the severity of her disability make a difference because Emma you can talk, make amazing web pages and do a ton of things she can't but especially live on your own. Jacqui - your beautiful Moo can also talk and do things I would give my eye teeth for Ellie to do.
What if Ellie remains as trapped by her body as she is now? Though I will try my best - I won't live forever - and then who will take care of her? I lose sleep over that. And what if I knew getting her stem cell therapy, SOMEDAY, would have a high chance of allowing her a degree of independence she doesn't currently have?
Actually Emma - I think you hit the nail on the head saying - can I live with the way I am now and if not can I live with the treatment? That is the question really, isn't it?!
Is it something you have to do earlier to gain most "benefit" or the same "result" despite timing?
Or does anyone even really know for sure?
Does that make sense?
Catherine - I have heard that too - but I think it is more common thinking than based in actual medical fact. I am not sure, at this point, anyone knows for sure.
Thanks so much for leaving these links and details. I've spent the last few days doing my own "stem cell research." Right now, I've come to three decisions: I will bank the cord blood of any of my future children. I wanted to do it for Charlie, but the circumstances of his birth did not allow it. I will bank Charlie's baby teeth--I think that shows the greatest promise in the future. We are not rushing off to China.
My son is very young, but I hurt when I think about all that lies ahead of him.
Thank you so much for the links.
Katy - I have never heard of the baby teeth thing. Please send the link. We wanted to save Ellie's cord blood too but it was destroyed during her birth. So I am intrigued by the baby teeth as she still has all of hers.
I know what you mean about hurting when you think about what lies ahead.
hey Kathryn. You are right but it's another thing that I struggle with is when is "it" enough?
Cochlear seems a lot more straight forward though.
Moo can do lots of nice stuff, so shouldn't I just be greatful for what he can do and leave it at that. Or should I try stem cells, so that he can sit straighter for longer periods of time instead of slumping to the side? Should I do it so that instead of choking on his food every now and then - he doesn't choke at all? So that his hands don't shake when he uses them - in fact so that he can actually use that left hand that causes us so much drama? So that his speech is clearer and people can understand him on his "off" days - of which he is having too many at the moment.
When is it enough? When do I stop trying to change him?
I don't envy the choices and decisions that you face. But I will stand behind the choices I make and only hope that Moo will understand.
Love,
Jacqui
Jacqui - I have to admit your comment got my back up a bit but I suppose I deserve it for my last comment that you were responding to.
Ok - for the record - I am NOT judging you nor any parent regarding alternative or medical treatments for CP or other so called disabilities that you or any does or does not undertake. I apologize for comparing Ellie to Moo. It's always a bad thing to do for many reasons.
Also, and here is where I get defensive, I do love Ellie just the way she is and just because I follow the whole stem cell thing and hope that one day it becomes as safe and as common as choclear implants does not mean I love her any less. I am sure you did not mean to imply that - but there it is.
Lastly, I wrote this post to share that information with Katy and anyone else and also to spark discussion. At this point in time I am not endorsing subjecting children to stem cell therapy. I wouldn't subject Ellie to it because I feel like the risk is too great. I don't know that we will ever feel that the risk is worth it. But of course, as a parent, I want my child to have a happy, healthy, pain free existence. Ellie has the first and lately often the second but never the third - that is why I, personally as a parent of Ellie only, look to potential healing therapies like stem cells.
So, again, apologies for comparing our kids.
Lastly, I am sure the decisions we are both facing are not all that different in intensity or difficulty. I don't envy yours either.
I hope that clarifies where I stand on all of this. Know too I appreciate your thoughts on all of this.
Emma - apologies as well for comparing your situation to Ellie's that wasn't cool on my part and was a bad mechanism to try and explain where I was coming from even considering stem cell therapy for Ellie. Thanks for your comments as I always appreciate your perspective.
Kathryn,
I'm sorry for getting your back up. That wasn't my intention. And I don't think negetively of you because you are considering stem cells - nobody in their right mind would. I just wish it was more proven and not as expensive so that it would be an easier choice for you to make.
You are doing an amazing job. I've been spending a bit of time lately looking at power chairs with Moo on the internet and there are some amazing ones out there - ones that even climbs stairs. If technology and advances can benefit our kids, then why shouldn't we take advantage of it?
Kathryn,
Sorry it took me so long to see this!!! We may have seizures going on here so I have been preoccupied.
My husband and I were talking about your question about timing the other day (we are both biomed nerds by training). I DO feel like timing is going to be crucial in most instances for stem cells to work to their full potential.
The damaged brain cells give off certain chemical signals that direct the stem cells to the proper locations and "tell" them what to do (theoretically). It is thought that after enough time has passed, the damaged cells lose their ability to give off the proper chemical signals.
We are seriously considering taking William to China. I asked our Neuro if it would help and she said it is unknown. I asked if it would hurt and she said that it probably would not... that the money in the toilet is the worst that could happen.
I'm not sure I agree. I fear that injecting my son with pluripotent cells may eventually end with cancer somewhere in his body where the stem cells ended up and did the wrong thing.
There is no easy answer, that's for sure.
I will certainly write on my blog if we decide to go.
I wonder if this would work for a child with a brain malformation, vs a child who has an injured brain?
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