prayeriedawn's Blog
A little stessed...haven't posted in a while...
Let's see, this last few weeks have all been about my daughter~ who is 17 yrs old.
1) she was diagnosed with spinal meningitis and had to be hospitalized and put on the "big boy" antibiotics. To confirm the diagnosis of meningitis she had to have a spinal tap/lumbar puncture. While in the hospital receiving antibiotics, she still kept having killer headaches and was vomitting everytime she tried to sit up or walk.
The headaches and vomitting can actually be a complication from the lumbar puncture. The puncture doesn't heal properly and the spinal fluid leaks out into the body, causing pressure in the brain. The solution ~ a blood patch....taking blood from a vein in the arm and shooting into the puncture to form it's own seal. Kind of like a band-aid.
2) a blood patch was performed on my daughter...another painful injection into the spine, through the same puncture that the original fluid was removed. Talk about breaking a mother's heart..if I could of eased her pain in anyway..I sure would of!!
Headache was still happening and so was the vomitting...this was very puzzling to the docs. So they did a CT scan and an MRI with and without contrast of my daughter's brain....THE NEWS to END ALL NEWS!!!!
3) my daughter was diagnosed with a brain tumor. It is a dermoid tumor. It has probably has been with her entire life but due to the fact that her spinal fluid had been taken and depleted, the fluid in her brain..it caused pressure on this tumor...and now that it's awake..it won't shut the hell up. This tumor is really gross...it has hair, sweat glands, teeth and fingernails. The doctors say it was an undeveloped twin that my daughter's body absorbed and it has been living and growing in her brain. It's only 5mm big...but any space taken up in the brain is dangerous. Most people that absorb an undeveloped fetus..it is usually found in the stomach or the the tail bone area near the spine...to be found in the brain is very rare.
My daughter has had a history of migraines since 2005...this could be the reason why..this tumor.
If the tumor news wasn't bad enough...but my daughter is supposed to be graduating a year early from high school..her graduation date is Aug 13th....she only has 1 credit left. All this is on hold until we find out how soon her surgery can be done. And then we've been told that it will take 6-8 weeks to recover from brain surgery...
I
Telling a 17 yr old that her plans are postponed or have to be rerouted is a fight within itself. We're done crying and are actually trying to make fun of this situation...I keep telling my daughter that she ate the "good twin"..she's the evil one!!
She jokes back with me and wonders...when they remove the twin..what if it was the smart one and she has to start college doing remedial classes?? 
We even are taking it a step further and I told her to pick out a name for her sibiling...she wants a boy's name, I want another girl...so now, we are fighting over that~ go figure!!!
My life is all wrapped up in my daughter right now...I'm still staying on top of my vitamins and trying to gain weight..but just the stress from everything..I have lost 6 lbs in two weeks.
Just thought I would write down this stuff so later I can look back and see where we have been....
EDITED TO ADD July 3: we have been referred to the University of Texas M.D. Anderson Cancer Center...my daughter's tumor is more than just a dermoid tumor. It is suspected to be a cancerous tumor. It resides in the same space as her pituitary gland. It is not clear if this is a pituitary gland cancer or if it's a cancer that is residing in the same space as the gland and attached to her brain.
EDITED to UPDATE July 28: WHEW ~ what a Monday!!
We drove to Anderson Cancer Center yesterday (200 miles, one way). Brittany had 10 viles of blood drawn, another MRI with and without contrast and a PECT scan. A PECT scan can look at her tumor in 3 & 4 dimensional.
We met with her TEAM of doctors...her onocology doc, endocrine doc, neurosurgeon, her radiation doctor and chemotherapist. These doctors get together with her and run by the action and course of care they would like to do with her. They set goals and then everyone tries to work towards those goals.
They believe Brittany is ready for brain surgery. The tumor looks to be small enough to operate on. They want to go over the latest PECT scan and we will going back to see them on the 8th.
They did say that Brittany will have to be on replacement hormone therapy for the rest of her life after her surgery. They will have to remove part of her pituitary gland. But they were positive and said that now a days, any hormone that the pituitary gland makes naturally, can be replaced in synthetic form..so she will still be a normal developing woman and this won't interfere with growth hormones or even getting pregnant on down the line when she chooses.
They haven't said whether she will have to begin chemo or not...that decision will be made when the tumor is removed. If they can remove 100%, they would only prescribe 2 sets of chemo for precaustionary...if they can't get the entire tumor...then we will go from there on how many sets of chemo she will need.
It still hasn't been decided whether the actual surgery will take place through her nasal cavity or to open up her skull. We will find that information also on our 8th appt. Recovering time in the hospital after her surgery will be 2 weeks ~ as long there is are no complications with either procedure.
It was a long day yesterday. WE got there at 10:00AM and didn't get home until 1:00AM. So we are totally exhausted. Just enough time to rest up and get prepared for our Aug 8th appt.
Everything was good news....it was a GREAT appt. and Brittany is very happy and satisfied with the explanations given to her and her care. They talk to her directly and they ask her "what she would like the outcome to be". They really make her feel that they work for her and she is the boss of her care. I think that is AWESOME!!!
Things are going our way.....thanks to your support!!!
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Let's see, this last few weeks have all been about my daughter~ who is 17 yrs old.
1) she was diagnosed with spinal meningitis and had to be hospitalized and put on the "big boy" antibiotics. To confirm the diagnosis of meningitis she had to have a spinal tap/lumbar puncture. While in the hospital receiving antibiotics, she still kept having killer headaches and was vomitting everytime she tried to sit up or walk.
The headaches and vomitting can actually be a complication from the lumbar puncture. The puncture doesn't heal properly and the spinal fluid leaks out into the body, causing pressure in the brain. The solution ~ a blood patch....taking blood from a vein in the arm and shooting into the puncture to form it's own seal. Kind of like a band-aid.
2) a blood patch was performed on my daughter...another painful injection into the spine, through the same puncture that the original fluid was removed. Talk about breaking a mother's heart..if I could of eased her pain in anyway..I sure would of!!
Headache was still happening and so was the vomitting...this was very puzzling to the docs. So they did a CT scan and an MRI with and without contrast of my daughter's brain....THE NEWS to END ALL NEWS!!!!
3) my daughter was diagnosed with a brain tumor. It is a dermoid tumor. It has probably has been with her entire life but due to the fact that her spinal fluid had been taken and depleted, the fluid in her brain..it caused pressure on this tumor...and now that it's awake..it won't shut the hell up. This tumor is really gross...it has hair, sweat glands, teeth and fingernails. The doctors say it was an undeveloped twin that my daughter's body absorbed and it has been living and growing in her brain. It's only 5mm big...but any space taken up in the brain is dangerous. Most people that absorb an undeveloped fetus..it is usually found in the stomach or the the tail bone area near the spine...to be found in the brain is very rare.
My daughter has had a history of migraines since 2005...this could be the reason why..this tumor.
If the tumor news wasn't bad enough...but my daughter is supposed to be graduating a year early from high school..her graduation date is Aug 13th....she only has 1 credit left. All this is on hold until we find out how soon her surgery can be done. And then we've been told that it will take 6-8 weeks to recover from brain surgery...
I
Telling a 17 yr old that her plans are postponed or have to be rerouted is a fight within itself. We're done crying and are actually trying to make fun of this situation...I keep telling my daughter that she ate the "good twin"..she's the evil one!!
She jokes back with me and wonders...when they remove the twin..what if it was the smart one and she has to start college doing remedial classes?? We even are taking it a step further and I told her to pick out a name for her sibiling...she wants a boy's name, I want another girl...so now, we are fighting over that~ go figure!!!My life is all wrapped up in my daughter right now...I'm still staying on top of my vitamins and trying to gain weight..but just the stress from everything..I have lost 6 lbs in two weeks.
Just thought I would write down this stuff so later I can look back and see where we have been....
EDITED TO ADD July 3: we have been referred to the University of Texas M.D. Anderson Cancer Center...my daughter's tumor is more than just a dermoid tumor. It is suspected to be a cancerous tumor. It resides in the same space as her pituitary gland. It is not clear if this is a pituitary gland cancer or if it's a cancer that is residing in the same space as the gland and attached to her brain.
EDITED to UPDATE July 28: WHEW ~ what a Monday!!
We drove to Anderson Cancer Center yesterday (200 miles, one way). Brittany had 10 viles of blood drawn, another MRI with and without contrast and a PECT scan. A PECT scan can look at her tumor in 3 & 4 dimensional.
We met with her TEAM of doctors...her onocology doc, endocrine doc, neurosurgeon, her radiation doctor and chemotherapist. These doctors get together with her and run by the action and course of care they would like to do with her. They set goals and then everyone tries to work towards those goals.
They believe Brittany is ready for brain surgery. The tumor looks to be small enough to operate on. They want to go over the latest PECT scan and we will going back to see them on the 8th.
They did say that Brittany will have to be on replacement hormone therapy for the rest of her life after her surgery. They will have to remove part of her pituitary gland. But they were positive and said that now a days, any hormone that the pituitary gland makes naturally, can be replaced in synthetic form..so she will still be a normal developing woman and this won't interfere with growth hormones or even getting pregnant on down the line when she chooses.
They haven't said whether she will have to begin chemo or not...that decision will be made when the tumor is removed. If they can remove 100%, they would only prescribe 2 sets of chemo for precaustionary...if they can't get the entire tumor...then we will go from there on how many sets of chemo she will need.
It still hasn't been decided whether the actual surgery will take place through her nasal cavity or to open up her skull. We will find that information also on our 8th appt. Recovering time in the hospital after her surgery will be 2 weeks ~ as long there is are no complications with either procedure.
It was a long day yesterday. WE got there at 10:00AM and didn't get home until 1:00AM. So we are totally exhausted. Just enough time to rest up and get prepared for our Aug 8th appt.
Everything was good news....it was a GREAT appt. and Brittany is very happy and satisfied with the explanations given to her and her care. They talk to her directly and they ask her "what she would like the outcome to be". They really make her feel that they work for her and she is the boss of her care. I think that is AWESOME!!!
Things are going our way.....thanks to your support!!!
5 Comment(s)
Comment by loucrew06 on Jun 28, 2008 at 10:09am
My beautiful friend, I am So sorry to hear this news. Bless your heart. YOU MUST make sure to eat and take your vitamins. You cannot take care of your Baby if you do not take care of yourself. That is a fact you need to make sure you adhere to. I am here for you anytime you need to talk. I am praying hard for you and your daughter, and your family. If there is anything I can do, please let me know.
Comment by dawnmc3 on Jul 04, 2008 at 05:39am
I saw your pic on the message board and you look so beautiful. I am a week post op today and love reading profiles and dreaming about what I will look like one day.
I will keep your daughter in my prayers.
Dawn
I will keep your daughter in my prayers.
Dawn
Comment by CuteGal1974 on Jul 09, 2008 at 08:42am
Sorry to hear about your daughter Dawn, but glad to hear that you're still able to make her laugh & smile! VERY IMPORTANT! Don't forget to continue taking care of yourself though, 'cause you're no good to anyone if you're sick, and your baby needs you now more than ever! All the best to you, and stay positive girlie!
Sara
Sara
Comment by Hobbitzz on Jul 22, 2008 at 04:38pm
My thoughts and prayers go with you and your family during this trying time. MD Anderson is a very good facility and they are making advancements in many areas. Please take care of yourself.
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Hugs, TC