Tuesday, July 14, 2009

Stem cells, and major regrets.

I am so discouraged!

Back in April of 2008 when I heard the dreaded words "mild Ventriculomegaly" I went on the hunt for a support group. I found the following website, http://www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly&page=1, and met many amazing women. One of those women was my friend Amy (aka. Turtlemom) that frequents Jude's blog. She had a beautiful daughter Parker, and she about the same age as Jude is. Once Amy's daughter was diagnosed in utero with hydrocephalus she researched banking her daughters cord blood. Jude did not present with hydrocephalus, but rather what looked like a lack of brain (cortical thinning). I never ran across information on stem cells helping Jude in anyway. Amy, and I have kept up with each other because our children's situations are similar. Although, I must admit she has kept up with Jude's blog more than I have with Parker, and I am ashamed of that. I am now 100% to date with Parker's story. You see Parker also has bilateral schizencephaly, she has 2 cysts in her brain, and she had severe visual loss. Now? After the stem cell infusion.......... she is crawling, sitting, babbling, and she has her vision. That folks is amazing, and I am thrilled for her family. So sweet Amy emailed me asking if I had considered the stem cell option for Jude. I did consider this, and I asked prior to Jude being born if I should bank his cord blood. The doctor said we could in case of illness, but that it would be of little help to his brain damage (little did he know). I still wanted to bank his blood, but honestly with everything going on I did not. It was very expensive, and I think I was just overwhelmed. Parker's infusion was done fairly quickly after birth, so I am unsure if this has a lasting impact vs stem cell infusion later in life. That is a question I need to pursue.

So I called Duke university this morning, and talked with them about the program they are running. It seems Jude most likely would have qualified IF his cord blood had been banked. They would have used his cord blood to do a stem cell infusion. I then asked them if we can get donated stem cells, and they said no. My next question, was sibling stem cells, but she explained that at this time they cannot use sibling donations. I then asked her if she knew of another research program in the US, or beyond that would accept donated cord blood, but she didn't. My heart sank.

So what benefit are stem cells? Well Amy sent me this article about stroke recovery, and it's rather fascinating http://neurosurgery.stanford.edu/about/stemcellsfillgap.html. I plan on contacting the doctor to see if he has any suggestions. My understanding is that the stem cells can actually improve recovery. They are special cells that can become other types of cells, and work as building blocks within the body. There is no guarantee, but if your child had brain damage and even had a remote possibility of being able to walk, talk, or sit because of a low risk procedure, I am sure you would do it.

So would I have another child if they could use that child's cord blood? YES, it's a no brainer. Have I been scolded that I don't have the finances for this, yes. Although when it comes down to your child, and possibility improving or saving their life ........ well what's the question....you would do it. We would hope that we would have a healthy normal child, and be able to help Jude at the same time. Could I give Mike a normal baby? I would hope so, but the pregnancy would be FULL of stress and questions, although the child would be very loved. In the end there is no question, if there was a possibility this would help Jude, we would MAKE IT WORK. Second jobs, whatever it took......we would make it work. The possibility of this happening is very remote people, so I don't need opinions on it. My maternal side of my family has wanted me to have another child for a long time, but honestly I didn't want to. Would I have an issue with having another child? yes, and no. I have gotten myself in the mind set that this will not happen for various reasons, and I am very comfortable with that. So either way we would do what we needed to. I would stress about finances, because we owe so much in medical bills right now. Although, we are in a different situation now because Jude is receiving help through MDCP. Anyway, like I said......remote possibility, and as of right now no possibility if there are no programs out there. So let me stress as of right now this will never happen, it's just me working thoughts out in my head. I guess it's me dreaming of helping Jude.

I am very uneducated when it comes to stem cells, and maybe someone reading this would have more insight. I do know that in certain situations stem cells cannot be used. Anyone having a chromosomal deficiency cannot use their banked cord blood because the blood carries the same error the DNA has. Also in some situations when a child is sick, it will infuse more of the problem back into the child. Although Jude's issues are not chromosomal or illness, it's all due to the stroke. It's all very fascinating though, and amazing that the medical field can provide this treatment to others. Yesterday I learned that Max http://lovethatmax.blogspot.com/ will also be receiving stem cell therapy, and I am crossing my fingers for Ellen. Regardless, of what may happen to Jude in the future I think the possibility of these children having a chance at even partial recovery is WONDERFUL. There are no guarantees, but I will continue to hope for the best for them.

In the end I will pray, and hope that somewhere down the line Jude can benefit from this amazing procedure. I will continue to research, and follow programs that offer this. I will also not accept the immediate advice of some doctors that may not know the full benefits of stem cells. Jude may never profit from this new research, but we can still keep up with it, and see what advances are made. I can also kick my own butt for not following my own mothers intuition, and finding a way to bank the cord blood. That very well may be something I regret for the rest of my life.

To see the progress little Parker has made please visit her video here: http://www.youtube.com/watch?v=2P8LTCQkaGI. Her mom said she still has her coned shaped head, but she looks just beautiful to me!

Now there is my long rant for the day, and the emotions circling inside of me are many and overwhelming today. I have regret, a little hope, and just pure fasicination. Since Jude was diagnosed my life is no longer simple decisions. My life seems to be full of situations that wreak havoc on my brain at times. I am not just talking about the cord blood, because the possibility it may have worked could be zero. I guess it's just life in general. Sometimes it just isn't easy, but sometimes it's great. It's just the never ending tug of war between the two sides.

13 comments:

mom2nji said...

Wow thats amazing for Parker. I can imagine the feelings you are having right now. However I am sure you did they best you could and listened to your doctors advice. I completely agree about having another baby if sibling cells would help. And you can always worry about the money another day (or decade)Debt and bills are not life and death. Your sons well being is!

Joslynn said...

Hi Jenn,

We don't know each other but after reading your post I felt like you needed a little encouragement. I pray that you not have any regrets in this lifetime and if you do I pray that you turn those over to God so that He can do what He does best. I pray for you and your sweet family and baby Jude, I know that God placed Jude in your loving family for a perfect reason. God knew how this would play out and He is still in control of this situation even though there are times when it might not seem that way. The one thing you have to do is keep giving it ALL to Him and TRUSTING that He knows what He's doing. I did a bible study once and learned the following:
1 - God is who He says He is
2 - God can do what He says He can do
3 - I can do all things through Christ who strengthens me
4 - God's word is alive and active in me
5 - I am who God says I am

Sounds simple but sometimes that's what we need is a simple reminder. I know that God is still in the miracle making business...and I pray this for your family!

~Amy said...

Jenn...you are amazing and God has a plan and purpose for you and Jude. Have faith in HIM.

Midwest Mommy said...

My heart is sinking right along with you. My friend's daughter who has CP didn't bank her cord and now they are telling her it could have healed her. Honestly when I had the kids no one even approached me about banking it. Why? Why doesn't the hospital have someone who consuels you in this. I mean they go out of their way to get you to breastfeed but they can't help people out with this decision. Needless to say we didn't bank either kids' cords. I hope I never regret this in the future.

Debbie said...

Hi Jenn

Don't beat yourself up - I have followed your blog and you are the most amazing Mother. No one knows what Jude's future holds but with you as his Mom it can only be good.

Ellen said...

Jenn, do not lose hope!

I have been trying to find the blog I've read about a little boy who went to China to get a stem cell transplant, still searching. In the meantime, check out this article on stem cell "tourism" in China:
http://blog.bioethics.net/2009/03/stem-cell-treatment-tourism-reported-on-the-local/

Google around.

I want everyone to know that even though we are taking Max to get it, stem cell therapy is still experimental. It cannot hurt, but it is most definitely not always a miracle cure. Like Debbie said, do not beat yourself up, Jenn! You are an unbelievable mother.

xo

Anonymous said...

Hello Jenn,
It's Amy (AKA Turtlemom) here.
I really think the beginning sentence of the entry should be, "I am ENCOURAGED." You never know where modern medicine will be in even a year. Maybe donated stem cell infusions for strokes will be commonplace??? The infusion for Hydro wasn't done until a mother asked about it only 2 1/2 years ago. If it weren't for her (www.fetalhydrocephalus.com) I don't know where we'd be now.
Jenn, you are a wonderful Mommy. I read your entries and don't know how you do it. Mike is the best Dad. And, what can we say about Em. Isn't she just the #1 Big Sister????
Good luck to Max and Ellen! The Duke folks are fabulous. We are going back for a 2nd infusion in August. I am really excited for you guys!
Blessings to Jenn, Mike, Emily and of course, Jude!!!

Hugs and kisses from Parker & I

Amy Hendrix (TurtleMom)

(Here is our complete story -
http://www.i-am-pregnant.com/vip/turtlemom#msg)

Laurie Pace said...

Follow your heart. God is there. Keep it simple and always acknowledge Him. He is showing you the way right now.

therextras said...

The only bank for cord stem cells in our state, Jenn, is in the city where I live. I made a 'field trip' to the bank just last week to research for a post on stem cell treatment for CP. I can't put it all here, but I agree with everyone who has said, don't give up hope on this particular treatment.

If you go back a few posts on my blog - the first or second one on eating - the blog linked for the swallow study is about a baby who has had cord stem cell treatment.

And, the child who went to China was Fletcher at:
http://smallestsmykay.blogspot.com/. I just checked and his mom, Erin, has not posted in a month. That may not be a bad sign since she just had another baby. But you can read all about her China trip in past posts.
(Going over to visit Ellen)
Barbara

Bronx Cataldo's said...

Jenn,
When I had Eoghan 9 yrs ago I knew nothing of stem cell. When I had Maura 6 yrs ago I had checked into it and it was expensive but at her delivery I got asked if I wanted to donate her cord blood to research and I did. With Finnian to be honest I didn't even think about it. At his delivery they asked if I wanted to bank it or donate it to research, again I signed for it to be donated What I hope is that my childrens donation of cord blood has been put to good use in research.

andrea said...

jenn, even when you do everything to bank blood for your child, it sometimes doesn't work. i set up placenta and cord blood banking for aaron, but because of the damage from his birth, it was not useable. i was upset but you cannot worry about things out of your control. hopefully someday donated stem cells will be the norm. jude and mike look so cute sleeping together.

Cjengo said...

Thanks Andrea, I found out placenta stem cells don't have to match. We were told at first that Jude would not benefit from them either due to the extent of brain damage, but we are now being told that's very inaccurate, so you might check again. Yep there are never any guarantees, so I keep stressing that through my blog. Even with the infusion it may not do anything.

Patti said...

Isn't Amy wonderful? She has been there for me with my grandson Jayden's issues too....amazing how we live in different areas of the US yet the internet brought us all together.

BTW, I read your blog everyday and Jude is absolutely beautiful and your family is amazing.