It's Ronnie here, guest-posting as Natalie and Mandy are away from home and computer tonight, just in time for me to get home from two weeks in Canada.
Mandy and Natalie are hanging out at All Children's Hospital tonight. Mandy's showing some "flu-like symptoms," three words that have been typed by an awful lot of people over the last several weeks.
Mandy woke up Saturday morning vomiting. No big deal; kids get upset stomachs and stuff all the time, and even Mandy's allowed an upset stomach every once in a while. I got my update on that situation before I took off this morning from Vancouver.
I had a connection in Denver; she had vomited again, but was restful, and most importantly, not feverish. Still no big deal; Zofran and Ativan were doing their jobs to calm her tummy.
By the time I landed in Tampa, well, it was a big deal, because now there was a fever, going up and going up fast. When I made my "Honey, I'm home" call, Mandy and Natalie were already in St. Petersburg.
The fever has apparently peaked at 103. Rapid flu tests are showing negative, but rapid flu tests are notoriously inaccurate. Counts and such are pointing the general direction of something, well, flu-like. Tylenol has joined Zofran and Ativan to keep Mandy comfortable.
We'll find out more in the morning, when the real flu tests come back. Mandy's going to stay overnight, because it's a long ride to the hospital, and we want to make sure that fever stays down before she comes home. Whether it's flu or merely "flu-like," we want it go away.
Saturday, November 7, 2009
Friday, October 23, 2009
Happy Birthday!
Nine years ago today, I became a mom for the third and final time.
Eight years ago today, I learned that Mandy's life journey might be difficult...scary...and courageous.
Seven years ago today, I learned there was a tumor, or more accurately, the potential of a tumor.
Six years ago today, I looked at a toddler, with a beautiful spirit and a gorgeous dimple that never failed to melt my heart.
Five years ago today, I had a little girl in preschool, full of spunk and a zest for life.
Four years ago today, we were in a hospital room, trying to figure out what was causing the unexplained neurological episodes.
Three years ago today, I wanted to believe the worst was behind her.
Two years ago today, I had no idea that every thing was about to change.
One year ago today, I watched my baby girl spend her birthday recovering from chemo the day before.
Today, I look at a little girl who is a warrior, an optimist, a believer. She has a stubborn streak, is opinionated and is learning to advocate for herself. She has been through more in nine years than a lot of people deal with in a lifetime. She has taught me how to smile, how to look for a way and a reason to laugh, how to dig deeper than I ever thought possible for a strength I never knew I had. She has shown me that at any given moment, all that really matters, is just that....THAT MOMENT.
It is a gift to be her momma, one I am forever grateful for.
Happy birthday, Mandy. I love you more than words can possibly express. Today you turned 9 and to paraphrase one of the best birthday wishes you got all day... I expect/ hope/ dream/ plan for at least 91 more.
Love to all~
Eight years ago today, I learned that Mandy's life journey might be difficult...scary...and courageous.
Seven years ago today, I learned there was a tumor, or more accurately, the potential of a tumor.
Six years ago today, I looked at a toddler, with a beautiful spirit and a gorgeous dimple that never failed to melt my heart.
Five years ago today, I had a little girl in preschool, full of spunk and a zest for life.
Four years ago today, we were in a hospital room, trying to figure out what was causing the unexplained neurological episodes.
Three years ago today, I wanted to believe the worst was behind her.
Two years ago today, I had no idea that every thing was about to change.
One year ago today, I watched my baby girl spend her birthday recovering from chemo the day before.
Today, I look at a little girl who is a warrior, an optimist, a believer. She has a stubborn streak, is opinionated and is learning to advocate for herself. She has been through more in nine years than a lot of people deal with in a lifetime. She has taught me how to smile, how to look for a way and a reason to laugh, how to dig deeper than I ever thought possible for a strength I never knew I had. She has shown me that at any given moment, all that really matters, is just that....THAT MOMENT.
It is a gift to be her momma, one I am forever grateful for.
Happy birthday, Mandy. I love you more than words can possibly express. Today you turned 9 and to paraphrase one of the best birthday wishes you got all day... I expect/ hope/ dream/ plan for at least 91 more.
Love to all~
Thursday, October 1, 2009
Today
It has been one helluva week. And one I promise to recap in greater detail later. But, today let's leave it at the text I sent out after Mandy's appointment in Orlando today.
No surgery! No biopsy! No more chemo!! Right now, she is officially OFF TREATMENT! And right now, that ROCKS!!
All of those things MAY come to be at one point or another. There may be surgery someday. There may be a biopsy someday. There may be more chemo someday.
But, today nineteen long months of chemo comes to a successful end. And today? Is all that ever really matters. And today, is good! Really, really, really good.
Love to all~
No surgery! No biopsy! No more chemo!! Right now, she is officially OFF TREATMENT! And right now, that ROCKS!!
All of those things MAY come to be at one point or another. There may be surgery someday. There may be a biopsy someday. There may be more chemo someday.
But, today nineteen long months of chemo comes to a successful end. And today? Is all that ever really matters. And today, is good! Really, really, really good.
Love to all~
Saturday, September 26, 2009
Next week
Mandy has been feeling good since we got home from the hospital, which is good, in the vast majority of ways. In a few ways, it is almost more concerning. If the event on Sunday had led into a bout with a stomach bug or the flu or whatever, it would have explained a lot. But, she feels fine.
I have spoken with the NF clinic in Orlando, where she was just seen about a month ago. At the time, they expressed a great deal of concern about the left parietal lobe area. They felt like it was going to definitely require intervention at some point.
I wasn't quite prepared for that "at some point" to be quite so soon.
The docs over there want a second MRI and feel at this point that most likely a biopsy of that area will be in order.
So, we have several appointments next week, over to Orlando for an MRI, Tampa for what is supposed to be her last chemo before a break, back over to Orlando to have a round table discussion with all the docs to come up with the proper plan.
It will be a difficult week ahead.
As always, we are so thankful for all our friends who continue to amaze me with just how much, how willingly and how often they are willing to step up and help however needed. When I sign off on these posts with "Love to all~" know that those are not just words. It is a statement of just how blessed you make us feel. You all show us so much love and we are truly grateful for each and everyone one of you. Please know we love you all right back.
Love to all~
I have spoken with the NF clinic in Orlando, where she was just seen about a month ago. At the time, they expressed a great deal of concern about the left parietal lobe area. They felt like it was going to definitely require intervention at some point.
I wasn't quite prepared for that "at some point" to be quite so soon.
The docs over there want a second MRI and feel at this point that most likely a biopsy of that area will be in order.
So, we have several appointments next week, over to Orlando for an MRI, Tampa for what is supposed to be her last chemo before a break, back over to Orlando to have a round table discussion with all the docs to come up with the proper plan.
It will be a difficult week ahead.
As always, we are so thankful for all our friends who continue to amaze me with just how much, how willingly and how often they are willing to step up and help however needed. When I sign off on these posts with "Love to all~" know that those are not just words. It is a statement of just how blessed you make us feel. You all show us so much love and we are truly grateful for each and everyone one of you. Please know we love you all right back.
Love to all~
Tuesday, September 22, 2009
Home. Do we have answers? Not sure...
We were discharged this afternoon after completion on the EEG and after the MRI report came back. I am so stupid tired that I am just going to make this very quick, unfortunately I can't make it to the point.
Here's what we know:
The bizarre bloodwork spike....
The docs feel this could be indicative of a seizure and the bodies stress response to it.
The EEG was normal, which I am told decreases, but does not rule out seizures.
The MRI was essentially stable. Extensive myelin vaucoulization, left parietal
lobe still noted that enhances with contrast, bilateral optic gliomas
still noted with intraorbital components.
The CT did note the myelin vaucoulization, as well as noting the left parietal lesion.
Thing about the two radiology studies, the CT did pick up the left parietal lobe area, that coupled with the fact that it is enhancing on MRI makes it almost definitely a structural mass, meaning a 2nd tumor.
What happened on Sunday behaved very much like a seizure or like the
events back in 2005 that were never diagnosed. We searched for a year for an answer to those episodes. We went to Dallas for a doctor. We went to Birmingham, AL for a doctor. We spent countless hours in doctors offices and inpatient in the hospital. And no one could ever figure them out. It was heartbreaking and incredibly debilitating to Mandy. They were happening several times a week at the worst point. Eventually the rule became, as long as she wasn't unconscious for more than 30 minutes, don't bother going to the ER. They didn't know what to do to help her. We hit 29 minutes once. It was pure hell. And the longest 29 minutes of my life.
As for Sunday, she was perfectly fine before the episode and fine within several hours after, and has not had another episode since. However, frankly, we are not optimistic that another one won't occur. Given her history, the doctors certainly aren't optimistic that it was a one time event either, and were very honest about that. I was sent home with the eerily familiar instructions of 2005, "Call us when it happens again." They were not certain they were seizures, but were not certain they were not either. They did not want to do anything further at this point as far as treatment goes for the potential seizures, or not.
When I got home I called her regular neurologist and gave him the run down of test results. He has been her neurologist since 2003 or 4...I can't remember for sure, but a long time. He was her primary through all the uncertainty back in 2005. He was 110% certain that Sunday's event was a seizure. The convincing factor for him? The crazy spike in white count and ANC in the bloodwork. He is so sure he was ready to call in a prescription for seizure meds right that minute.
I also spoke with my friend, who was also Mandy's geneticist back many moons ago when we still needed a geneticist. I tease her that she is a one stop shop for me as she happens to be married to a neurologist. She concurred that she was certain it was a seizure.
So, what to do? Seizure meds or not to seizure meds? We are thinking on that.
The fact that her head turned to the right during the episode on Sunday and that the area in the left parietal is almost now 100% certain to be a second tumor does concern me greatly. The left side of the brain controls the right side of the body. So,a head turn to the right would stem from the left side of the brain.
She only has this week and next week left for chemo and then she is done. For now.
We have to remove the chemo to know if that area will do anything. We can't leave her on it indefinitely. I get that. And I agree. But, to take her off chemo, especially with this development scares the ever loving crap outta me. When we remove the subduing factor of chemo will that tumor take off and grow like crazy? No one knows.
That, among other reasons is why we are so careful about how we present this "end of chemo" to her. It's a break. We hope the break last a long time, forever even. But, we have to temper that with a degree of realism.
It probably won't.
The fact is, Mandy has neurofibromatosis. She lacks a tumor suppressor gene. Her body doesn't know any better now not to grow a tumor than it did before. The optic glioma is still there and now this 2nd tumor is there. And with the addition of the potential seizures..... it's a chemo break. I just hope and pray a break is the right thing to do. And that it lasts.
And now, I am beyond exhausted. I am not even entirely sure that this post is the least bit coherent. If not, I apologize. If you have a question I didn't answer or I didn't answer coherently, feel free to ask. But, in the meantime, I think I have amassed a total of 4 hours sleep since Saturday night. So, I am going to bed. Have to be up at 5 to get two kids to school and one to chemo. Ronnie comes home on Friday. Zachary starts his audition process for the 5th grade musical tomorrow. He desperately wants a big role. Send him some good mojo, if you would. Alannah had seatiing auditions at her youth orchestra last night, that she actually managed to make it to, due to some wonderful friends. Good mojo for her too. It is so hard to have our family scattered to the winds like that. I was so happy to be able to hug all three of my kids tonight. They have been worried and scared, but rise to so much more of a challenge than they should ever have to. They are amazing kids, all three of them and we are so blessed to have them.
A million thanks to a million people for all the love and prayers and help with Alannah and Zachary and food and visits and and and the list goes on and on. We are oh so blessed to have you all and so incredibly grateful.
Goodnight and
Love to all~
Here's what we know:
The bizarre bloodwork spike....
The docs feel this could be indicative of a seizure and the bodies stress response to it.
The EEG was normal, which I am told decreases, but does not rule out seizures.
The MRI was essentially stable. Extensive myelin vaucoulization, left parietal
lobe still noted that enhances with contrast, bilateral optic gliomas
still noted with intraorbital components.
The CT did note the myelin vaucoulization, as well as noting the left parietal lesion.
Thing about the two radiology studies, the CT did pick up the left parietal lobe area, that coupled with the fact that it is enhancing on MRI makes it almost definitely a structural mass, meaning a 2nd tumor.
What happened on Sunday behaved very much like a seizure or like the
events back in 2005 that were never diagnosed. We searched for a year for an answer to those episodes. We went to Dallas for a doctor. We went to Birmingham, AL for a doctor. We spent countless hours in doctors offices and inpatient in the hospital. And no one could ever figure them out. It was heartbreaking and incredibly debilitating to Mandy. They were happening several times a week at the worst point. Eventually the rule became, as long as she wasn't unconscious for more than 30 minutes, don't bother going to the ER. They didn't know what to do to help her. We hit 29 minutes once. It was pure hell. And the longest 29 minutes of my life.
As for Sunday, she was perfectly fine before the episode and fine within several hours after, and has not had another episode since. However, frankly, we are not optimistic that another one won't occur. Given her history, the doctors certainly aren't optimistic that it was a one time event either, and were very honest about that. I was sent home with the eerily familiar instructions of 2005, "Call us when it happens again." They were not certain they were seizures, but were not certain they were not either. They did not want to do anything further at this point as far as treatment goes for the potential seizures, or not.
When I got home I called her regular neurologist and gave him the run down of test results. He has been her neurologist since 2003 or 4...I can't remember for sure, but a long time. He was her primary through all the uncertainty back in 2005. He was 110% certain that Sunday's event was a seizure. The convincing factor for him? The crazy spike in white count and ANC in the bloodwork. He is so sure he was ready to call in a prescription for seizure meds right that minute.
I also spoke with my friend, who was also Mandy's geneticist back many moons ago when we still needed a geneticist. I tease her that she is a one stop shop for me as she happens to be married to a neurologist. She concurred that she was certain it was a seizure.
So, what to do? Seizure meds or not to seizure meds? We are thinking on that.
The fact that her head turned to the right during the episode on Sunday and that the area in the left parietal is almost now 100% certain to be a second tumor does concern me greatly. The left side of the brain controls the right side of the body. So,a head turn to the right would stem from the left side of the brain.
She only has this week and next week left for chemo and then she is done. For now.
We have to remove the chemo to know if that area will do anything. We can't leave her on it indefinitely. I get that. And I agree. But, to take her off chemo, especially with this development scares the ever loving crap outta me. When we remove the subduing factor of chemo will that tumor take off and grow like crazy? No one knows.
That, among other reasons is why we are so careful about how we present this "end of chemo" to her. It's a break. We hope the break last a long time, forever even. But, we have to temper that with a degree of realism.
It probably won't.
The fact is, Mandy has neurofibromatosis. She lacks a tumor suppressor gene. Her body doesn't know any better now not to grow a tumor than it did before. The optic glioma is still there and now this 2nd tumor is there. And with the addition of the potential seizures..... it's a chemo break. I just hope and pray a break is the right thing to do. And that it lasts.
And now, I am beyond exhausted. I am not even entirely sure that this post is the least bit coherent. If not, I apologize. If you have a question I didn't answer or I didn't answer coherently, feel free to ask. But, in the meantime, I think I have amassed a total of 4 hours sleep since Saturday night. So, I am going to bed. Have to be up at 5 to get two kids to school and one to chemo. Ronnie comes home on Friday. Zachary starts his audition process for the 5th grade musical tomorrow. He desperately wants a big role. Send him some good mojo, if you would. Alannah had seatiing auditions at her youth orchestra last night, that she actually managed to make it to, due to some wonderful friends. Good mojo for her too. It is so hard to have our family scattered to the winds like that. I was so happy to be able to hug all three of my kids tonight. They have been worried and scared, but rise to so much more of a challenge than they should ever have to. They are amazing kids, all three of them and we are so blessed to have them.
A million thanks to a million people for all the love and prayers and help with Alannah and Zachary and food and visits and and and the list goes on and on. We are oh so blessed to have you all and so incredibly grateful.
Goodnight and
Love to all~
Monday, September 21, 2009
It's after midnight...
It's 12:07 am in Room 261. Mandy and I are both exhausted. She JUST fell asleep. Like minutes ago. Hospitals are not terribly conducive to rest and relaxation.
This is where things stand today, tonight, this morning....whatever.
I have the CT report in my sweaty little palm. It reads
"Impressions:
1. No acute intracranial process identified.
2. No evidence of intracranial hemorrhage.
3. In this patient with history of neurofibromatosis, change of myelin vacuolization part as read in correlation with prior MRI of 06/25/2009.
4. No convincing new abnormalities seen.
Findings:
Computed tomography of the head was preformed without the administration of intravenous contrast material.
In this patient with history of neurofibrmatosis, optic pathway glioma and extensive myelin vacuolization as seen on prior MRI's, the most conspicuous CT signal abnormalities are seen with low attenuation identified bilaterally medial basal ganglia/globus pallidus.
Left parietal lesion only faintly visualized on this CT study.
There is no evidence of acute intracranial hemorrhage.
There is no shift of the midline structure."
We had the MRI today. And though I looked at the disc and have my amateur radiologist opinion, I will wait until the actual professional report to post those findings. She is hooked up to the EEG now, and will remain so for a while, at least 24 hours, possibly longer.
Counts were back to to normal for her today ANC 1100, WBC 3.36, platelets 292. Which makes that whole bizarre increase yesterday even more bizarre.
Hopefully, we will have a better idea tomorrow. I remain terrified that it will be a repeat of 2005 and we won't know what's going on. But, I am equally terrified that they will diagnose something that would be equally or even more scary.
I want to just take a second to throw out some thank yous. It truly does take a village to raise a child, but lemme tell ya, you really have to lean hard on your village in times like this. And boy oh boy, does our village step up.
Charitta and family who are housing and caring for Alannah, the Coopers and now Anne who are housing and caring for Zachary. Jane and Greg and gang who are housing and caring for the dogs. Kim and Mary Ann who went all kinds of out of their way today to make sure that Alannah didn't miss seating auditions at youth orchestra tonight. Amanda who came to visit bearing a mocha for Momma and a Webkinz and sticker book for Mandy. Angela who came to visit bearing gifts and food and laughs. Kate who, with the help of several Facebook friends came and dropped off a couple of perfect mochas for Momma, a pizza for a starving Mandy and a ton of pastries from Starbucks. A ton of texts and phone calls and messages letting us know that so many people are praying for and loving Mandy, and all of us.
Mandy summed it up when she said, after being NPO(without food or drink) all day long and a sedated MRI and while she was hooked up to the EEG machine, "You know, it was a pretty good day today for being in the hospital."
We are blessed and very thankful to be surrounded by the most amazing friends and neighbors and adoptive family. We love you all.
I am going to try to nap. Will update again tomorrow when I get counts and MRI reports.
Love to all~
This is where things stand today, tonight, this morning....whatever.
I have the CT report in my sweaty little palm. It reads
"Impressions:
1. No acute intracranial process identified.
2. No evidence of intracranial hemorrhage.
3. In this patient with history of neurofibromatosis, change of myelin vacuolization part as read in correlation with prior MRI of 06/25/2009.
4. No convincing new abnormalities seen.
Findings:
Computed tomography of the head was preformed without the administration of intravenous contrast material.
In this patient with history of neurofibrmatosis, optic pathway glioma and extensive myelin vacuolization as seen on prior MRI's, the most conspicuous CT signal abnormalities are seen with low attenuation identified bilaterally medial basal ganglia/globus pallidus.
Left parietal lesion only faintly visualized on this CT study.
There is no evidence of acute intracranial hemorrhage.
There is no shift of the midline structure."
We had the MRI today. And though I looked at the disc and have my amateur radiologist opinion, I will wait until the actual professional report to post those findings. She is hooked up to the EEG now, and will remain so for a while, at least 24 hours, possibly longer.
Counts were back to to normal for her today ANC 1100, WBC 3.36, platelets 292. Which makes that whole bizarre increase yesterday even more bizarre.
Hopefully, we will have a better idea tomorrow. I remain terrified that it will be a repeat of 2005 and we won't know what's going on. But, I am equally terrified that they will diagnose something that would be equally or even more scary.
I want to just take a second to throw out some thank yous. It truly does take a village to raise a child, but lemme tell ya, you really have to lean hard on your village in times like this. And boy oh boy, does our village step up.
Charitta and family who are housing and caring for Alannah, the Coopers and now Anne who are housing and caring for Zachary. Jane and Greg and gang who are housing and caring for the dogs. Kim and Mary Ann who went all kinds of out of their way today to make sure that Alannah didn't miss seating auditions at youth orchestra tonight. Amanda who came to visit bearing a mocha for Momma and a Webkinz and sticker book for Mandy. Angela who came to visit bearing gifts and food and laughs. Kate who, with the help of several Facebook friends came and dropped off a couple of perfect mochas for Momma, a pizza for a starving Mandy and a ton of pastries from Starbucks. A ton of texts and phone calls and messages letting us know that so many people are praying for and loving Mandy, and all of us.
Mandy summed it up when she said, after being NPO(without food or drink) all day long and a sedated MRI and while she was hooked up to the EEG machine, "You know, it was a pretty good day today for being in the hospital."
We are blessed and very thankful to be surrounded by the most amazing friends and neighbors and adoptive family. We love you all.
I am going to try to nap. Will update again tomorrow when I get counts and MRI reports.
Love to all~
Update from Room 261, again
We had a neurology consult this morning. She believed it could have been a seizure and wanted an EEG. Oncology also came in and said they wanted an MRI and agreed with the EEG. Her counts are all back down to normal(for her) range again. The white count was back down to 3.36 at 4am today from 6.0 in the ER last night. ANC was back down to 1100 from 4620 last night. No one is quite sure what to do with that. The ER doc had told me that sometimes a seizure can falsely elevate the white count. But, I don't know how common, or even accurate, that is.
So, the plan as it stands right now is this: She has been put on NPO status(no food or drink) for the next 4 hours. They will first do an MRI. The CT they did last night would only show things like fluid or pressure, not necessarily tumor growth. The MRI will show that, if there is any to show, which hopefully there isn't.
After that they will hook her up for an EEG for about 24 hours. The neurologist will then review that and determine if she wants it for an additional 24 hours or not.
She is still feeling fine, is bored out of her head and now hungry. Hopefully, these tests will give us something to go on. I am hoping maybe the really bizarre bloodwork will give them some ideas...but, I don't know. I am just really hoping and praying this isn't the start of something like what happened back in '05 that no one was ever able to figure out, diagnose or treat.
At this point, I am just hoping for answer and not to have that nasty cycle she had back that start up again.
We love our hospital and doctors, the one thing that is a bummer is that there are no private rooms, even on the oncology floor. So, we are about to be joined by a 3yo roommate.
That's about all I know for now. Will update later when I know more.
Love to all~
So, the plan as it stands right now is this: She has been put on NPO status(no food or drink) for the next 4 hours. They will first do an MRI. The CT they did last night would only show things like fluid or pressure, not necessarily tumor growth. The MRI will show that, if there is any to show, which hopefully there isn't.
After that they will hook her up for an EEG for about 24 hours. The neurologist will then review that and determine if she wants it for an additional 24 hours or not.
She is still feeling fine, is bored out of her head and now hungry. Hopefully, these tests will give us something to go on. I am hoping maybe the really bizarre bloodwork will give them some ideas...but, I don't know. I am just really hoping and praying this isn't the start of something like what happened back in '05 that no one was ever able to figure out, diagnose or treat.
At this point, I am just hoping for answer and not to have that nasty cycle she had back that start up again.
We love our hospital and doctors, the one thing that is a bummer is that there are no private rooms, even on the oncology floor. So, we are about to be joined by a 3yo roommate.
That's about all I know for now. Will update later when I know more.
Love to all~
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