Wednesday, April 28, 2010
Hopes held high
Baby Daniel recieved a scan last week to make sure that the tumor or any form has not re grown. We are still awaiting the results but hope to have them back soon and will post them as soon as they come in. Please keep baby daniel in your thoughts and your prayers as we are hoping that he is still cancer free!!!!
Wednesday, February 10, 2010
EEG
Today was Daniels EEG, we should get any results back from that by friday. It didn't go as well as we hoped, part of it was my fault i guess. They wanted him to go to sleep so they could monitor his brain activity while falling asleep, in a deep sleep and then while waking and fully awake. Well.. he didn' t go to sleep. He was up at least 4 times last night, i have been sick and couldn t help but try nap about 45 minutes before we left, he was playing around and when i woke up he was asleep on me lol. Oops. Well, we may have to do it again. They monitored and recorded about 45 minutes worth, they are going to give it to the neurologist and the people who read those tests and will let us know.
I will be sure to update everyone as soon as we find anything else out. Oh we had to cancel the phoenix childrens hospital appointment as they got scheduled too close together, I figured this one was the more important of the 2 so we stuck with it.
Daniel goes to see the oncologist again on the 17th for a follow up, I'm not really sure why since they have decided against chemo and all. I guess we'll find out.
Oh if anyone would like to help support childhood cancer research you can go to candlelighters.org, It's a great site and they also have some real cool car magnet ribbons that say "conquer kids cancer" I bought a couple and love them! They are only 3 dollars each and come real quick. 100% of the proceeds go towards their programs and services.
Take care!
I will be sure to update everyone as soon as we find anything else out. Oh we had to cancel the phoenix childrens hospital appointment as they got scheduled too close together, I figured this one was the more important of the 2 so we stuck with it.
Daniel goes to see the oncologist again on the 17th for a follow up, I'm not really sure why since they have decided against chemo and all. I guess we'll find out.
Oh if anyone would like to help support childhood cancer research you can go to candlelighters.org, It's a great site and they also have some real cool car magnet ribbons that say "conquer kids cancer" I bought a couple and love them! They are only 3 dollars each and come real quick. 100% of the proceeds go towards their programs and services.
Take care!
Wednesday, January 27, 2010
CANCER FREE
Well... Daniel is cancer free!! yea!!
The surgeon does not want to see him back for 3 months for another mri. However I did schedule an appointment at Phoenix childrens as they seemed to think we needed to keep a closer eye on it than that. We go in to phoenix childrens feb 9th. We should also find out their pathology results and what their oncologists opinion was for treatment and follow ups routine.
There may not be anything to report until then, if there is I'll be sure to keep it posted.
Daniels seems to be doing well and is his happy usual self!
Thank you for reading!
The surgeon does not want to see him back for 3 months for another mri. However I did schedule an appointment at Phoenix childrens as they seemed to think we needed to keep a closer eye on it than that. We go in to phoenix childrens feb 9th. We should also find out their pathology results and what their oncologists opinion was for treatment and follow ups routine.
There may not be anything to report until then, if there is I'll be sure to keep it posted.
Daniels seems to be doing well and is his happy usual self!
Thank you for reading!
Friday, January 22, 2010
No Diagnosis, not now.......maybe not ever
Well.. we are home from phoenix childrens hospital, our meeting with their neurosurgeon went well, however it wasn't what i wanted to hear. To sum it all up, he did look at the slides and all the records i brought from banners so he did not come in to the room knowing not knowing anything like the dr yesterday. However, he did agree with the possible diagnosis we were given which was .. let me see if i can get this right without looking lol... desmoplastic infantile ganglioglioma astrocytoma.. not bad huh? lol Even though he has the same thought, he said often times with cases like this when so many people have looked at it and has had different opinions we may never have a definitive diagnosis or answer as to what it is. The way he explained it is that there are new tumors coming up every day, and tumors can transform from one thing to another and depending on what part of the tumor, especially one this huge, you can find different things. We may never know what it is.
He also mentioned that when babies have these congenital tumors their bodies don't recognize the tumor as being foreign, they don't know it's not supposed to be there, therefore the body doesn't fight it or do anything to prevent it from growing again. Even though the diagnosis might be a begnign diagnosis these tumors often times are very aggressive, they can grow back and grow fast and large. Because of their aggressiveness he recommends mri's at least every 2 weeks and most likely chemo therapy for at least 1 year.
At the end of the meeting I asked what the chances were of this thing growing back assuming they were able to remove the whole tumor. His reply was about 30 %. I don't know if those odds are high enough to constitute putting him through chemo.
From what he said there are times that they could presesnt a case like this to the board of oncologists and neurologists and teams, and they may never all agree on a path of treatment, and prevention, it's basically just up to the parent what path they decide they want to take and pray it's the best one. I don't know how they expect parents to make these decisions when these world renouned experts can't even agree, i don't know how to even come to grips with that.
On our way out the door the Dr. walked us out and he did make the comment that we are in good hands, that his surgery appears to be very successful, daniel is overall doing beautifully thus far and that he is going to be ok. He said not to expect it to end here, this is going to be a fight, there will be a battle, but the overall outcome looks very positive for him. I guess I have to prepare myself for the fight and get that in my mindset and come to grips with that.
We have 1 month to get the results from the pathology and this mri tomorrow, the eeg next week, and any other tests we can do, find out what the board of health professionals have to say and put it all together and try to make a decision on his treatment plan and whether or not to do chemo. If anyone has any insight it is much appreciated, if you want to respont in the guestbook or email me at andingurls@yahoo.com.
It's such an emotional rollercoaster, first they tell us he's dying, then he has 2-4 years to live, then he's cured, now he needs chemo and extensive follow up testing... all within about 6 weeks! How does anyone deal with that? I am still amazed at how little research and knowledge they have on childhood brain tumors. From what I understand there have been so many popping up lately that they have had to start having these board meetings once a week to present their cases vs once a month! Still no one knows why or what causes them.
Daniel is sleeping, I think I may go take a nap with him for now. I will continue to update as we find new information. Tomorrow is his MRI of his brain and full spine. It is said to take at least 5 hours. I don't know if we will get the results or not tomorrow but the surgeon did say he would do his best to look at them right away and give us a call friday if he can. I will post something either way to let everyone know. Thank you for reading!
Please don't hesitate to email or sign the guestbook, I am curious to read other people's insights and thoughts
He also mentioned that when babies have these congenital tumors their bodies don't recognize the tumor as being foreign, they don't know it's not supposed to be there, therefore the body doesn't fight it or do anything to prevent it from growing again. Even though the diagnosis might be a begnign diagnosis these tumors often times are very aggressive, they can grow back and grow fast and large. Because of their aggressiveness he recommends mri's at least every 2 weeks and most likely chemo therapy for at least 1 year.
At the end of the meeting I asked what the chances were of this thing growing back assuming they were able to remove the whole tumor. His reply was about 30 %. I don't know if those odds are high enough to constitute putting him through chemo.
From what he said there are times that they could presesnt a case like this to the board of oncologists and neurologists and teams, and they may never all agree on a path of treatment, and prevention, it's basically just up to the parent what path they decide they want to take and pray it's the best one. I don't know how they expect parents to make these decisions when these world renouned experts can't even agree, i don't know how to even come to grips with that.
On our way out the door the Dr. walked us out and he did make the comment that we are in good hands, that his surgery appears to be very successful, daniel is overall doing beautifully thus far and that he is going to be ok. He said not to expect it to end here, this is going to be a fight, there will be a battle, but the overall outcome looks very positive for him. I guess I have to prepare myself for the fight and get that in my mindset and come to grips with that.
We have 1 month to get the results from the pathology and this mri tomorrow, the eeg next week, and any other tests we can do, find out what the board of health professionals have to say and put it all together and try to make a decision on his treatment plan and whether or not to do chemo. If anyone has any insight it is much appreciated, if you want to respont in the guestbook or email me at andingurls@yahoo.com.
It's such an emotional rollercoaster, first they tell us he's dying, then he has 2-4 years to live, then he's cured, now he needs chemo and extensive follow up testing... all within about 6 weeks! How does anyone deal with that? I am still amazed at how little research and knowledge they have on childhood brain tumors. From what I understand there have been so many popping up lately that they have had to start having these board meetings once a week to present their cases vs once a month! Still no one knows why or what causes them.
Daniel is sleeping, I think I may go take a nap with him for now. I will continue to update as we find new information. Tomorrow is his MRI of his brain and full spine. It is said to take at least 5 hours. I don't know if we will get the results or not tomorrow but the surgeon did say he would do his best to look at them right away and give us a call friday if he can. I will post something either way to let everyone know. Thank you for reading!
Please don't hesitate to email or sign the guestbook, I am curious to read other people's insights and thoughts
Thursday, January 21, 2010
Sorry its been to Long, I will be better and keep everyone posted :)
Sooo... today was an interesting appointment. Apparrently it looks like both diagnosis have been wrong. He did not have time to look at the slides but he read through the reports and said he's done over 800 cases and he already know's it can't be right. He said he's just had 2 other cases this week very similiar and very odd. He is going to order the pathology and take a look at it himself and order his own tests to be done. He is also going to present the case to the board of oncologists at his next meeting Tuesday to see what everyone else thinks. We will meet with him again next week to find out what conclusion they have come to. During his exam he believes daniel has lost some of his vision in his r. eye due to the surgery. We will have to have his vision tested as soon as he's old enough.
Well we meet their neurosurgeon tomorrow, i think it may be just more of an introductory thing just incase we transfer his care and need to re operate, I don't imagine there is anything more that he could tell us at this point.
I will update again tomorrow whether there is anything new to report or not that way everyone knows either way.
Thank you for all your prayers
Wednesday, December 30, 2009
What a Miracle !!
Daniel had his check up today and got wonderful news !!!! His brain tumor was misdiagnosed and is now said to have ganglioglioma which is a very low grade and does not always come back. Daniel may not need chemo after all. Thank you everyone for all the prayers, the lord has listned and certainly answerd them during this amazing holiday season. What a wonderful way to start off the new year to know and watch little miracles.
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