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Great news on the MRI ! [Oct. 13th, 2006|08:33 am]
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Good morning, everyone! We have received some very encouraging news the past few days regarding Justin's recent MRI. We got the official report from Burzynski yesterday, here are the highlights...

"...the mass shows significant decrease in the amount of enhancement when compared with the previous study as well as the baseline of 06/06..."

(this basically means that the cancerous portion of the tumor has decreased yet again! The decrease is 29% since Justin's last MRI in August!!!)

"...there is increase in the size of the cyst which in located centrally. It now measures 2.9 cm x 2.6 cm, versus 1.8 cm x 1.5 cm in the prior study..."

(so, the tumor overall is larger (3.5 cm x 3.3 cm,) but it's not because the cancer is growing, it's because the Antineoplastons are breaking the solid tumor down and turning it into liquid!!)

We are of course ecstatic by the recent news, but at the same time trying to be cautious as well. We need to monitor Justin carefully over the next few months as Dr. Barbara warns that there could be an increase in symptoms due to the growing cyst. We may be able to control these symptoms with an increase in steroids, but it's kind of a wait and see. Dr. Barbara said that Dr. Burzyski was "very encouraged" by the results especially considering the low dose he's been on. Justin's next MRI will be in 6 weeks instead of 8 this time.

For the first time, Dr. Barbara brought up in conversation the possibility of aspirating or decompressing the cyst. We were always under the impression that no one would want to touch this thing, but apparently draining the cyst is a possibility. If Justin's symptoms get worse and Decadron can't control them, we may need to meet with a Neurosurgeon about the details of this procedure.

Yesterday, I also spoke with Dr. Chi at Dana Farber regarding the MRI as well. She always reviews Justin's MRI's and has been open minded and supportive of our choice to try Antineoplastons. Anyway, she concurred with the Burzynski report and also brought up aspiration of the cyst. I never mentioned it, she brought it up. So, I asked "have you ever seen a Pontine Glioma react to a treatment this way, with a cyst this large," she said, "no, I have not." She has seen many other types of brain tumors do this, but not a DIPG. I also asked "have you ever had a patient with a Pontine Glioma in which a cyst has been drained?" Again, she said no. Very interesting. She also mentioned that Justin's MRI was not only reviewed by herself, but by the rest of the Neurologists as well. They obviously are seeing something new (to them anyway) in the way Justin's tumor is behaving. This has to be a good sign, right?

I wish I could end my update on a happier note, but sadly it looks like Matthew will not be going home from the hospital. His tumor has spread rapidly and further than the doctors anticipated. According to Rich (his Dad) Matthew has been in a deep sleep for several weeks now. Please pray for Matthew and for his family during this very painful situation. Pray for strength for Matthew and perseverance for his family that they will find a way to get him home somehow. Please continue your prayers for Leo, Chase, Kate and all the children. Kate's recent MRI did not show the results they were hoping for- her recent radiation to her spine did not work and the tumor continues to spread. Please visit their websites and show your support. It really does make a difference.

As always, you're continuing support is truly appreciated.

Thanks,
Jeff
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Comments:
From: (Anonymous)
2006-10-13 06:40 pm (UTC)

Great News!

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Jeff & Family, I'm so extremely glad to read of the good news on Justin's progress! Keep going strong Justin, you're gonna win this fight!

Jeff D
From: (Anonymous)
2006-10-13 07:53 pm (UTC)

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Hang in there Justin your doing it!!!!!!!!!!!!!
Love you, Auntie Joelene & Haley
From: (Anonymous)
2006-10-14 01:04 am (UTC)

Happy News

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Dear Justin and Family,

What wonderful news. I will continue to pray for even more great news. And pray that the cyst can be managed till they figure out how to get it GONE! Your story is so close to home, my nephew and family are looking into alternative medicine, this gives HOPE! Continue being the family you are and stay STRONG.

In my thoughts and Prayers,
STRONG VIBES
Liz Smout, Colby's Aunt
From: (Anonymous)
2006-10-14 04:21 am (UTC)

Woo Hoo...

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OH we're so happy to hear the good news about Justin's MRI. Hannah has a cyst too, she has gotten it asperated a number of times... our neuro-surgeon originally told us it was too risky to asperate the cyst and then another neuro-surgeon suggested this option to put a cathetar into the cyst and an omaya reservoir just under the skin - the reason for this is because the cyst will keep filling up once it is emptied... so we're able to tap the cyst whenever required (We put emla cream on it and they just stick a needle in it and draw out the fluid - Hannah is awake the whole time and it takes about 5 min)... i don't know if this is something that will help Justin, I think it depends on where the cyst actually is. However, if you have any questions or want to know more about, just let us know. Again, I can't tell you how happy we are about the MRI...

Take care, Tore, Kathie, Hannah and Allie Hatlen
From: (Anonymous)
2006-10-14 10:48 am (UTC)

Great News

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What great news. We pray things continue to the positive. Way to go Justin!
From: (Anonymous)
2006-10-16 11:26 pm (UTC)

Good news

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I am so happy to hear everything is going good, tumor wise. I hope Justins symptoms don't overcome him too much. Although there is a little relief in knowing you can drain the cyst. What these kids have to go through just to live. I hope you and Darlene are hanging in there, this is tough for Justin but so much worse for you both. I look forward to more good news in Justins journal. Take care, always thinking of your family, Naomi
From: (Anonymous)
2006-10-19 06:16 pm (UTC)

What a great night.

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Justin it was so good seeing you Saturday night. We had so much fun. It is always fun when we see you, mommy, daddy and Casey. You are so cute, I can hardly stand it. Uncle Bobby and I are out of town for a few days, but we will think about you all the time. Gina is going to send you something in a few days.... We all love all of you.... Big Hugs and Kisses to all.

Love Auntie Anne and Uncle Bobby.....
From: (Anonymous)
2007-03-02 07:01 am (UTC)

friend of a friend

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Hey cutie, I read about you on my friends MY SPACE and I thought I would check in to see how your doing. My family and I will keep you in our prayers. You are a very brave and strong little boy. I have a lot of hope in the fact that you are gonna get through this and show eveyone what a HERO you are. You keep your head up and stay strong and I will be praying for you all I can, and spreading the word to everyone I know. Get well soon!!!!Niina, Baltimore, Maryland