Last night, I came home from work and Eva was running a small fever and was sweating. She also had a diaper rash. Around midnight, she shot up out of her crib and started screaming for me to pick her up. Between Eva and Jack's middle of the night antics/bedroom raids, I finally went to bed around 4am.
Prior to February 29, I would have just ignored such things. Now, not so much.
So, this morning, she still had a fever. What do I do? Jon is, of course, still in freakin' Dubai en route home with no way for me to contact him. I called her pediatritian and the oncologist. The pediatrician said to bring her right in.
I really wanted to seem cool about it and not that I was freaking out as much as I was. So, I calmly called my mother and mother-in-law to let them know that I was taking Eva in.
Everything will be just fine, I say, but in my head, I have visions of racing back to the hospital for more surgery. How will I let Jon know? He won't be home until tomorrow. Ok, good thing that Phyllis came to help me out while Jon is gone, she can just stay, if I need her to help with Jack. How can I make it through another surgery so soon?
Guess what.
Eva is cutting teeth.
I think I'll go vomit now.
Friday, March 28, 2008
Thursday, March 27, 2008
Austin Meglar
Please, please, please today, keep the Meglar family in your thoughts and prayers.
As you all know, I am very new at this whole Neuroblastoma community. In the past month, I have started to follow many kids who have the same type of cancer that Eva does.
While we fall on the statistically good side of things, the other side is very bad. There is no cure for neuroblastoma.
Three weeks ago, I cyber met Austin Meglar's family. He was a miracle child and actually responding to treatment. The outlook looked fantastic. In just a few days, he went downhill and now the family is just praying and praying for a miracle.
Please join them.
As you all know, I am very new at this whole Neuroblastoma community. In the past month, I have started to follow many kids who have the same type of cancer that Eva does.
While we fall on the statistically good side of things, the other side is very bad. There is no cure for neuroblastoma.
Three weeks ago, I cyber met Austin Meglar's family. He was a miracle child and actually responding to treatment. The outlook looked fantastic. In just a few days, he went downhill and now the family is just praying and praying for a miracle.
Please join them.
Tuesday, March 25, 2008
Confession Tuesday
Short and Sweet:
Confession #1-I'm WAAAAY too exhausted to confess anything. Had a long day at work today working on spreadsheets and forgot my glasses, so it just sapped me. I'm not sure, but the fact that my children NEVER sleep when my husband is away also might contribute to it.
Confession #2-My only respite is, of course, the results show from Dancing with the Stars (currently on television).
Confession #3-Is it just sad that I knew who the Jonas Brothers were before tonight? I mean, I don't have a tween! Don't bother. I can answer that for myself. Yes, it is.
Confession #4- I can't think of anything else to write. I'm really, really tired. I'm going to drink more wine and get some rest.
Addendum-Confession #5- To quote Jana, "OK. Now, I've officially seen everything." Feel free to sing along.... Here You know, they are not half bad! As many of you know, I have written about my karaoke obsession. These guys are my dream karaoke party. I wonder if they are available for booking.
Confession #1-I'm WAAAAY too exhausted to confess anything. Had a long day at work today working on spreadsheets and forgot my glasses, so it just sapped me. I'm not sure, but the fact that my children NEVER sleep when my husband is away also might contribute to it.
Confession #2-My only respite is, of course, the results show from Dancing with the Stars (currently on television).
Confession #3-Is it just sad that I knew who the Jonas Brothers were before tonight? I mean, I don't have a tween! Don't bother. I can answer that for myself. Yes, it is.
Confession #4- I can't think of anything else to write. I'm really, really tired. I'm going to drink more wine and get some rest.
Addendum-Confession #5- To quote Jana, "OK. Now, I've officially seen everything." Feel free to sing along.... Here You know, they are not half bad! As many of you know, I have written about my karaoke obsession. These guys are my dream karaoke party. I wonder if they are available for booking.
Sunday, March 23, 2008
Happy Easter to You!
Here's a couple of shots of the kids at an Easter Egg hunt yesterday. Thank you to the Seacats for having us over!
The kids are hilarious in how different they are. Jack finds one egg, opens it, eats what is inside, goes and gets the next egg. He finished with like four eggs all of which had the candy eaten out of them. Eva, meanwhile, has picked up like 27 eggs. She then sat down on the step when all the eggs were picked up, to open each one of them to see what is inside. I wonder what that says about their personalities!
Kind of cool today but the kids have had a great Easter thus far. I'm off to finish the ham. Wish me luck!
Hope you and your family are having a wonderful day!
Eva hunts for eggs!
Jack with a mouthful!
Thursday, March 20, 2008
Happy Birthday to Me!
Today is the first day of spring, the start of the Persian New Year--NoRuz, Holy Thursday, Mr. Rogers' birthday and MY birthday!
Yes, this is the 20th anniversary of my 18th birthday! Hmm, what do you get for a 20th anniversary?
This is also smack dab in the middle of Birthday Week for my family. We have 6 of us born within 7 days of each other. It starts with my sister, Angela, March 17, then me, March 20, my grandfather, Dyda, my Aunt Trish and niece Katie all born on March 22, and my brother, JP, March 23!
Anyway, a very happy 38th birthday to me! Let's all eat some cake!
Yes, this is the 20th anniversary of my 18th birthday! Hmm, what do you get for a 20th anniversary?
This is also smack dab in the middle of Birthday Week for my family. We have 6 of us born within 7 days of each other. It starts with my sister, Angela, March 17, then me, March 20, my grandfather, Dyda, my Aunt Trish and niece Katie all born on March 22, and my brother, JP, March 23!
Anyway, a very happy 38th birthday to me! Let's all eat some cake!
Wednesday, March 19, 2008
The Kid's Next Birthday Gift
If ever I am in search of a new gift for the kids, I'll always have this list handy. I mean, who wouldn't want #5 for their kids. Actually, I think that #2 is ingenious!
To be warned, some of these are a bit off color.
To be warned, some of these are a bit off color.
Monday, March 17, 2008
Confession Tuesday
I'm going to start this off right away.
My first confession is that you know you are getting old/need a life when it's St. Patrick's Day and I can't wait to get home to watch Dancing with the Stars and The Bachelor. Is that just sad?
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The Bachelor is on right now and I'm a bit bored with these women, already. I mean, why do they have to get women who are just so stupid. I miss Tessa.
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The Bachelor is over so now I'm watching Pretty in Pink and while drinking a glass of milk and eating a white chunk macadamia cookie that a very kind person gave me today. Seems appropriate to have that much indulgence.
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Maybe I've watched too much Project Runway but what the heck is Molly Ringwald designing when she draws her prom dress? It looks like Jack drew the design or worse, I drew the design!
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I love Pretty in Pink. It is not as great as Sixteen Candles (Blane is NO Jake Ryan!), but you have to love a movie where they refer to each other as "richies".
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I've stopped sleeping. Almost completely. Last night, I slept for about three hours. Now, I'm wide awake and it is 11pm. Here's the good news about not sleeping. TCM shows all their musicals in the middle of the night. Yes, I said that right. That's the GOOD thing! I loves me some MGM musicals!
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Ok, it is now actually Tuesday. I did sleep a bit last night but not well. Kept dreaming that a tornado came to my house. I'm sure that has some meaning. It could be that we had tornado watches last night and that was on my brain before bed or it could the the Atlanta tornado or it could be Eva's cancer or it could be the fact that my house is a mess. I'm actually surprised that I don't dream about tornadoes every night!
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I just posted something on another blog about Footloose and now I can't get that out of my head. So, everybody cut, everybody cut, everybody cut, everybody cut Footloose!!
Got something to confess?
My first confession is that you know you are getting old/need a life when it's St. Patrick's Day and I can't wait to get home to watch Dancing with the Stars and The Bachelor. Is that just sad?
------------------
The Bachelor is on right now and I'm a bit bored with these women, already. I mean, why do they have to get women who are just so stupid. I miss Tessa.
-----------------
The Bachelor is over so now I'm watching Pretty in Pink and while drinking a glass of milk and eating a white chunk macadamia cookie that a very kind person gave me today. Seems appropriate to have that much indulgence.
------------------
Maybe I've watched too much Project Runway but what the heck is Molly Ringwald designing when she draws her prom dress? It looks like Jack drew the design or worse, I drew the design!
------------------
I love Pretty in Pink. It is not as great as Sixteen Candles (Blane is NO Jake Ryan!), but you have to love a movie where they refer to each other as "richies".
-------------------
I've stopped sleeping. Almost completely. Last night, I slept for about three hours. Now, I'm wide awake and it is 11pm. Here's the good news about not sleeping. TCM shows all their musicals in the middle of the night. Yes, I said that right. That's the GOOD thing! I loves me some MGM musicals!
--------------------
Ok, it is now actually Tuesday. I did sleep a bit last night but not well. Kept dreaming that a tornado came to my house. I'm sure that has some meaning. It could be that we had tornado watches last night and that was on my brain before bed or it could the the Atlanta tornado or it could be Eva's cancer or it could be the fact that my house is a mess. I'm actually surprised that I don't dream about tornadoes every night!
-------------------
I just posted something on another blog about Footloose and now I can't get that out of my head. So, everybody cut, everybody cut, everybody cut, everybody cut Footloose!!
Got something to confess?
Happy St. Patrick's Day!
Happy St. Patty's Day to you all! And a special Happy Birthday to my sis, Angela!
Saturday morning, I completed race #2 with the kids. It was another 5K. As you might recall, my last race, I placed 96 out of 100. Well, this time, I am happy to report that I placed 2090th out of 2200! That increased my percentage by 1%! I'm on the move!!!!
I do have to give myself special kudos for this race. The last mile or so has a hill that goes straight down and then straight up, then has an incline up for the remainder of the race. Going downhill was great but uphill pushing 65lbs of children just about did me in. Jack, of course, was screaming that he wanted me to "let go!!!!!!!!" of the stroller so he and Eva could just roll down the "rollercoaster" as he called it. Yeah, like THAT'S going to happen!
In the end, I sure could have used that "road rising up to meet me" and "the wind always at my back". Where were those Irish proverbs when I needed them!?!
After the race, we let the kids out of the stroller and danced to the band while the kids ate the free apples and bananas they offered. Above is The Nubbin double-fisting her apples.
At 11a, it was time for the Annual St. Patrick's Day parade! That was the first time we had ever been and were really looking forward to taking the kids. I got over the fact that the "Hooters Girls" started the parade (actually, it was a good lesson for me to give to Eva on how NOT to dress) but an hour into it, all the 22 year olds started drinking way too much so it was time to get the children home. They had enough beads, anyway.
A very Happy Lucky Day to you!
Wednesday, March 12, 2008
Hooray!
Well, the news is GOOD!!!!!
The test came back that the marker was "not amplified" which means that it was not aggressive.
AND THE BEST PART IS NO CHEMO!!!!! WAHOOOOOOO!!!!
The bottom line after all this is that we need to have chest ct's done every three months for the next two years. He said that while there is only a 10-15% chance that it will come back at all, even if it does, it probably will not spread anywhere else.
They will closely monitor her for at least 6 months but with each passing month without recurrence, we are one step closer to her being cured.
We could not have received better news.
Those who know me know that I am a very privately religious person. I can, however, say that I am sure that the only reason we are here today with this outcome is because of the thousands of people we know were praying for our little girl. I have said this many times over the past 13 days but we are more thankful than we can ever say.
What a whirlwind!
Oh, because I am also a proud mama, I thought I would attach this Easter picture of the kids that I had taken on Sunday. Here they are!
The test came back that the marker was "not amplified" which means that it was not aggressive.
AND THE BEST PART IS NO CHEMO!!!!! WAHOOOOOOO!!!!
The bottom line after all this is that we need to have chest ct's done every three months for the next two years. He said that while there is only a 10-15% chance that it will come back at all, even if it does, it probably will not spread anywhere else.
They will closely monitor her for at least 6 months but with each passing month without recurrence, we are one step closer to her being cured.
We could not have received better news.
Those who know me know that I am a very privately religious person. I can, however, say that I am sure that the only reason we are here today with this outcome is because of the thousands of people we know were praying for our little girl. I have said this many times over the past 13 days but we are more thankful than we can ever say.
What a whirlwind!
Oh, because I am also a proud mama, I thought I would attach this Easter picture of the kids that I had taken on Sunday. Here they are!
Tuesday, March 11, 2008
Confession Tuesday
Well, I'm very happy to be back in the confessional. It has been the longest 12 days imaginable.
For those new to the blog, each Tuesday, several of us enter the confessional. You can find more on Poet Mom's website or by visiting Carolee's website. Also, when you are on Carolee's site, please give her some warm wishes. Her mother is very sick. We've both been going through cancer at the same time. Life is definitely fragile.
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First up, I'm so happy to be able to visit other blogs, again, and see what others are writing. As more people are reading this, I have gone to other sites and seen some really great work out there.
*********************************************
Oh my god, my body is shutting down from exhaustion. I'm not sure if it is stress-related or 3am dance party-related but boy, I need some sleep bad.
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I love spring (see earlier post from Sunday). My confession is that I usually take a "sick day" and do my planting for the season. I will not be doing that this year as I have been away quite enough, thank you. AND it is not just because my boss reads my blog!
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I am SO far behind on thank you notes, phone replies and emails. I'm just so exhausted at the end of the day, I can't seem to get them done! I feel SOO guilty about it. Hopefully, those to whom I owe phone calls, thank you notes and emails understand.
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I'm really, really, really sad that The Wire is finished. I feel like I knew those folks so well. I mean, what will my Sunday nights every 18 months be without McNulty, Lester, Kima and Bunk? Never mind, Omar, Marlo, Bubbles, Michael, The Greek, oh, I could go on. Live in peace without me, Baltimore...
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Just two weeks ago, the day before I went to the dr. with Eva, I commented to Jana that I felt badly that I never blogged about Eva. I mean, Jack is the trouble maker. She's just this sweet kid who quietly destroys things in the house. Not the crazy 4-year old who loudly destroys things in the house. Honestly, when I made the commitment to Jana to blog more about Eva, this was not what I had in mind AT ALL!
****************************************
One quick and final note about Eva. We have follow up doctor visits Tuesday and Wednesday. That is when we discuss whether or not Eva has the marker that determines the next round of treatment. I'm scared to death of the news we might get. You can bet, I'll be posting...
For those new to the blog, each Tuesday, several of us enter the confessional. You can find more on Poet Mom's website or by visiting Carolee's website. Also, when you are on Carolee's site, please give her some warm wishes. Her mother is very sick. We've both been going through cancer at the same time. Life is definitely fragile.
**********************************************
First up, I'm so happy to be able to visit other blogs, again, and see what others are writing. As more people are reading this, I have gone to other sites and seen some really great work out there.
*********************************************
Oh my god, my body is shutting down from exhaustion. I'm not sure if it is stress-related or 3am dance party-related but boy, I need some sleep bad.
*********************************************
I love spring (see earlier post from Sunday). My confession is that I usually take a "sick day" and do my planting for the season. I will not be doing that this year as I have been away quite enough, thank you. AND it is not just because my boss reads my blog!
**********************************************
I am SO far behind on thank you notes, phone replies and emails. I'm just so exhausted at the end of the day, I can't seem to get them done! I feel SOO guilty about it. Hopefully, those to whom I owe phone calls, thank you notes and emails understand.
********************************************
I'm really, really, really sad that The Wire is finished. I feel like I knew those folks so well. I mean, what will my Sunday nights every 18 months be without McNulty, Lester, Kima and Bunk? Never mind, Omar, Marlo, Bubbles, Michael, The Greek, oh, I could go on. Live in peace without me, Baltimore...
****************************************
Just two weeks ago, the day before I went to the dr. with Eva, I commented to Jana that I felt badly that I never blogged about Eva. I mean, Jack is the trouble maker. She's just this sweet kid who quietly destroys things in the house. Not the crazy 4-year old who loudly destroys things in the house. Honestly, when I made the commitment to Jana to blog more about Eva, this was not what I had in mind AT ALL!
****************************************
One quick and final note about Eva. We have follow up doctor visits Tuesday and Wednesday. That is when we discuss whether or not Eva has the marker that determines the next round of treatment. I'm scared to death of the news we might get. You can bet, I'll be posting...
Monday, March 10, 2008
Creativitiy
Holy cow, some people are SOO creative! My dear friend Amy Jo sent this to me via email. I have no idea how some people do such neat things. I think this was a gene that somehow skipped me.
Sunday, March 09, 2008
Things I'm Thankful For
Oops! Wrote this yesterday and forgot to post!
On this gorgeous Sunday afternoon, I thought I would put up a couple of things that I am thankful for:
1) My family. All of them. My sister who flew in from North Carolina. Her husband who took care of their three kids while she was away. My parents who worked the entire week they were here reorganizing my house. Jon's sister, Jill and Jon's parents who kept Jack occupied for the week. All my other siblings who called me and sent care packages. I am so lucky to have them.
2) My Friends. All of them. You know, I have always felt that I hit the lottery when it came to my friends. I have always had such amazing luck with finding such awesome people. Whether it be everyone who called, sent food, emailed, had Eva put on various prayer lists etc., I am one lucky gal.
3) Daffodils. Daffodils are such happy flowers. Maybe it is because they signal the end of winter. Maybe it is because my birthday is the first day of spring and they are the flowers of my birth month. I'm not so sure. The day I left to take Eva to the dr., I drove out of my driveway and glanced down at my daffodils ready to pop. I was thinking, gee, I hope they are in bloom before Jack's birthday party next weekend. When we came home from the hospital last Friday, they were just gorgeous. A special thank you to my father-in-law, Joe who planted all of them for me last fall.
4) 3AM dance parties at the Harding's. Since my dear friends Shug and MJ came into town for moral support, we had a girl's night out at the Harding's Saturday night. After (allegedly) umpteen bottles of wine, three hours in their hot tub complete with our own cabana boys, and dinner served in the hot tub, we decided to have a dance party for four in their den. When I say that it was the release I needed, I don't think that even comes close.
5) My husband. Who not only was my rock during the last week, happily suggested that he take care of the kids so that I could attend said dance party. I am more grateful than I can say.
On this gorgeous Sunday afternoon, I thought I would put up a couple of things that I am thankful for:
1) My family. All of them. My sister who flew in from North Carolina. Her husband who took care of their three kids while she was away. My parents who worked the entire week they were here reorganizing my house. Jon's sister, Jill and Jon's parents who kept Jack occupied for the week. All my other siblings who called me and sent care packages. I am so lucky to have them.
2) My Friends. All of them. You know, I have always felt that I hit the lottery when it came to my friends. I have always had such amazing luck with finding such awesome people. Whether it be everyone who called, sent food, emailed, had Eva put on various prayer lists etc., I am one lucky gal.
3) Daffodils. Daffodils are such happy flowers. Maybe it is because they signal the end of winter. Maybe it is because my birthday is the first day of spring and they are the flowers of my birth month. I'm not so sure. The day I left to take Eva to the dr., I drove out of my driveway and glanced down at my daffodils ready to pop. I was thinking, gee, I hope they are in bloom before Jack's birthday party next weekend. When we came home from the hospital last Friday, they were just gorgeous. A special thank you to my father-in-law, Joe who planted all of them for me last fall.
4) 3AM dance parties at the Harding's. Since my dear friends Shug and MJ came into town for moral support, we had a girl's night out at the Harding's Saturday night. After (allegedly) umpteen bottles of wine, three hours in their hot tub complete with our own cabana boys, and dinner served in the hot tub, we decided to have a dance party for four in their den. When I say that it was the release I needed, I don't think that even comes close.
5) My husband. Who not only was my rock during the last week, happily suggested that he take care of the kids so that I could attend said dance party. I am more grateful than I can say.
Friday, March 07, 2008
We're Home!
We're home, sweet home!
Here's a shot of Eva with her new bunny from her cousins in Virginia! We have been home a couple of hours now and within minutes, Eva was back to her normal self, pulling all her clothes from her drawers, singing and dancing. It is hard to believe that she had that big of a tumor inside of her just a few days ago!
Eva dancing to her new favorite rabbit. My sister very kindly brought it to her. It sings, "If You're Happy and You Know It." Two verses. I now hate my sister.
Eva and her new BFF, Dr. Lenarsky. She LOOOOOVES HIM!
Eva's Baptism.
Also, here's a couple of "hospital" shots. I swear, you would never know she was sick! I finally have my camera cord so here she is!
Eva dancing to her new favorite rabbit. My sister very kindly brought it to her. It sings, "If You're Happy and You Know It." Two verses. I now hate my sister.
Eva and her new BFF, Dr. Lenarsky. She LOOOOOVES HIM!
Eva's Baptism.You Know You've Been in the Hospital Too Long When...
Tonight, the patient tech came in to do Eva's regular temperature/blood pressure check. My 16-month old Eva crawled to the end of her crib, ripped off her blood pressure cuff and handed it to the tech. Then, she pushed the correct button to start the check. While the blood pressure was reading, Eva reached into the basket and grabbed the thermometer and tried (albeit unsucessfully) to put the cover on it and check her own temperature.
We all just looked at each other in shock.
Wanted to take a second to thank our very good friend Jenni who happened to have a well-timed meeting in Dallas this week. She braved the "snow" and the most ridiculous cab story I have ever heard to come visit us for a couple of hours. I am so thankful to have so many great friends.
We all just looked at each other in shock.
Wanted to take a second to thank our very good friend Jenni who happened to have a well-timed meeting in Dallas this week. She braved the "snow" and the most ridiculous cab story I have ever heard to come visit us for a couple of hours. I am so thankful to have so many great friends.
Thursday, March 06, 2008
There's a Light
Eva just got her chest tube and IV taken out! Wahoo! I swear, five minutes later she was back out in the hallways making her rounds, talking to everyone, waving "hi", unbelievable! This kid can't be stopped!
Right now, she's sleeping next to us so peacefully.
Nothing new to report today except that we should be going home tomorrow....YEAH!
We'll still have to wait for the pathology to come back to determine course of treatment. That, hopefully, will be sooner rather than later.
I can't believe where I was exactly one week ago at 6:45pm. One of the techs from the ER came up to see Eva a couple of days ago and said that they told me at shift change so both sets of staff were there. I can't imagine what that must have been like for them. One hysterical Mom screaming at her husband to call our friend who is a radiologist. It seems like such a blur and like nine months ago.
Thank you, all so much, again, for all your calls, thoughts, cards, food, etc. We are so grateful.
Until tomorrow, hopefully...
Kristi
Right now, she's sleeping next to us so peacefully.
Nothing new to report today except that we should be going home tomorrow....YEAH!
We'll still have to wait for the pathology to come back to determine course of treatment. That, hopefully, will be sooner rather than later.
I can't believe where I was exactly one week ago at 6:45pm. One of the techs from the ER came up to see Eva a couple of days ago and said that they told me at shift change so both sets of staff were there. I can't imagine what that must have been like for them. One hysterical Mom screaming at her husband to call our friend who is a radiologist. It seems like such a blur and like nine months ago.
Thank you, all so much, again, for all your calls, thoughts, cards, food, etc. We are so grateful.
Until tomorrow, hopefully...
Kristi
Wednesday, March 05, 2008
What's Shimada You?
Hello, everyone.
We met with the oncologist today. Got some not so great news. Turns out that Eva has neuroblastoma not ganglioneuroblastoma. In as best as I can explain it, there are three things that they thought it could be, ganglioneuroma, ganglioneuroblastmoa or neuroblastoma, in order from best to worst.
Initially, they had thought that it was the ganglioneuroblastoma but when the path came back, it was the neuroblastoma. Good news in this is that she has what is called a "favorable histology" which somehow relates to a good thing. Of that scale, it goes favorable, intermediate and poor.
Without going into all the details (which would take forever), the bottom line between the ganglioneuroblastoma and the neuroblastoma is that neuroblastoma has a higher chance of recurrence.
The cancer did spread to a lymph node but that did not surprise me. The dr. had told us very early on that there was one in close proximity of the tumor so not to be surprised it it was affected.
We are still waiting on one final marker for the tumor. If it has blah-bi-de-blah marker (that's a technical term), we have a very aggressive treatment of chemo and radiation. If it comes back that that marker is missing, the treatment is just the surgery and chest ct every three months for two years.
Unfortunately, we won't get that information for another five to seven days.
We are back in the room today and just waiting for Eva to drain less from her chest tube. Once she gets to a certain level, we can go home. That looks like it will be Friday. That said, she's bright and perky and almost to her normal self. She's chatting away with all the doctors and nurses. I just looked up at her and she is trying to scale the crib with her "club foot"--her foot has the IV. Maybe having the chest "leash" at home wouldn't be so bad...
I swear, getting all this information, the names seem like they come from a Mel Brooks movie. The "ploidy" is this, she's X on the "shimada scale", her "shwannian stroma"...
We met with the oncologist today. Got some not so great news. Turns out that Eva has neuroblastoma not ganglioneuroblastoma. In as best as I can explain it, there are three things that they thought it could be, ganglioneuroma, ganglioneuroblastmoa or neuroblastoma, in order from best to worst.
Initially, they had thought that it was the ganglioneuroblastoma but when the path came back, it was the neuroblastoma. Good news in this is that she has what is called a "favorable histology" which somehow relates to a good thing. Of that scale, it goes favorable, intermediate and poor.
Without going into all the details (which would take forever), the bottom line between the ganglioneuroblastoma and the neuroblastoma is that neuroblastoma has a higher chance of recurrence.
The cancer did spread to a lymph node but that did not surprise me. The dr. had told us very early on that there was one in close proximity of the tumor so not to be surprised it it was affected.
We are still waiting on one final marker for the tumor. If it has blah-bi-de-blah marker (that's a technical term), we have a very aggressive treatment of chemo and radiation. If it comes back that that marker is missing, the treatment is just the surgery and chest ct every three months for two years.
Unfortunately, we won't get that information for another five to seven days.
We are back in the room today and just waiting for Eva to drain less from her chest tube. Once she gets to a certain level, we can go home. That looks like it will be Friday. That said, she's bright and perky and almost to her normal self. She's chatting away with all the doctors and nurses. I just looked up at her and she is trying to scale the crib with her "club foot"--her foot has the IV. Maybe having the chest "leash" at home wouldn't be so bad...
I swear, getting all this information, the names seem like they come from a Mel Brooks movie. The "ploidy" is this, she's X on the "shimada scale", her "shwannian stroma"...
Tuesday, March 04, 2008
The Nub
Good morning from chilly (so I hear) Dallas!
Yesterday was a blur. We all escorted Eva to the OR, Eva in my arms, Jon beside me and the tech pushing her crib ahead. We had 10 family members walking behind us. Eva was waving hi to everyone as we went by. I said it was like the world's worst Mardi Gras parade.
When we met with the surgeon, he said that he reviewed the ct scan again and had concerns that it was somehow attached to the pulminary artery and would not be able to be removed at all. They could, of course, not confirm any of that until they went in but it would only take a few minutes to do this. If it was attached, they would just biopsy, give her a port, and close her up. Great! More stress!
As my Dad wrote yesterday, all went well. He said that it was REALLY big for a little Nubbin. He said that it was the size and shape of a plastic football. God only knows how she could function with that thing in her!
Eva is doing well. She is still in the PICU. In meeting with the oncologist, he said that he has never known a child to have Eva's type of tumor to need chemo. Obviously, it depends on what the path says. Within the ganglioneuroblastoma family, there are good ones and bad ones. He said that the way that Eva looks right now, his guess is that it is a "good" one. We'll just wait and see.
Eva is on some pretty heavy drugs right now and they are weening her off so she can get back to her room later today. When we got there, they told me all they were giving her and wanted to make sure that was ok. I said, whatever she needs to make it through the night tonight, I fully support. The dr. was very happy to hear it and said that some moms don't want their kids to have any drugs. I told her I was not one of those moms. Drug her up! The last thing I want is for her to have pain today!
We can't use cellphones or computers while we are in the PICU so if I am a bit delayed getting back to you, please forgive me. As I have said, we are so happy and thankful for everyone's support through this.
Finally, a happy, happy birthday to my baby duck, Jack! We are having a celebration here in the hospital later this afternoon. When I talked to him today, he asked me all kinds of questions about Eva's surgery, "how did they put Eva's chest back on?" "didn't the needles poke her?" "why does she have tubes?"
Here's a shot of him at Disney from a couple of weeks ago! Happy 4th Birthday, big guy!
Yesterday was a blur. We all escorted Eva to the OR, Eva in my arms, Jon beside me and the tech pushing her crib ahead. We had 10 family members walking behind us. Eva was waving hi to everyone as we went by. I said it was like the world's worst Mardi Gras parade.
When we met with the surgeon, he said that he reviewed the ct scan again and had concerns that it was somehow attached to the pulminary artery and would not be able to be removed at all. They could, of course, not confirm any of that until they went in but it would only take a few minutes to do this. If it was attached, they would just biopsy, give her a port, and close her up. Great! More stress!
As my Dad wrote yesterday, all went well. He said that it was REALLY big for a little Nubbin. He said that it was the size and shape of a plastic football. God only knows how she could function with that thing in her!
Eva is doing well. She is still in the PICU. In meeting with the oncologist, he said that he has never known a child to have Eva's type of tumor to need chemo. Obviously, it depends on what the path says. Within the ganglioneuroblastoma family, there are good ones and bad ones. He said that the way that Eva looks right now, his guess is that it is a "good" one. We'll just wait and see.
Eva is on some pretty heavy drugs right now and they are weening her off so she can get back to her room later today. When we got there, they told me all they were giving her and wanted to make sure that was ok. I said, whatever she needs to make it through the night tonight, I fully support. The dr. was very happy to hear it and said that some moms don't want their kids to have any drugs. I told her I was not one of those moms. Drug her up! The last thing I want is for her to have pain today!
We can't use cellphones or computers while we are in the PICU so if I am a bit delayed getting back to you, please forgive me. As I have said, we are so happy and thankful for everyone's support through this.
Finally, a happy, happy birthday to my baby duck, Jack! We are having a celebration here in the hospital later this afternoon. When I talked to him today, he asked me all kinds of questions about Eva's surgery, "how did they put Eva's chest back on?" "didn't the needles poke her?" "why does she have tubes?"
Here's a shot of him at Disney from a couple of weeks ago! Happy 4th Birthday, big guy!
Monday, March 03, 2008
Thanks for the Prayers
Goodnight,Mom is busy tending to Little Eva. She asked me, her Dad, to update her blogger friends. Little Eva just came out of surgery. The tumor was mid-range in virulence and almost too large for them to operate on without first administering chemo to shrink it. But, the surgeon informed us that he got it all out. They felt that she would not need chemo so they did not insert a port. She also was doing so well, they did not need to put her on a ventilator.
Of course we are not totally out of the woods yet, but we are all thrilled that it is over and it went so well. Kristi wanted me to thank all of you who prayed and continue to pray for Little Eva. That made all the difference. And as always, we give God the glory!!!
Dad2eight
Of course we are not totally out of the woods yet, but we are all thrilled that it is over and it went so well. Kristi wanted me to thank all of you who prayed and continue to pray for Little Eva. That made all the difference. And as always, we give God the glory!!!
Dad2eight
Sunday, March 02, 2008
Here's What We Know
We met with the surgeon, Dr. Kevin Kadesky, earlier tonight.
He said that Eva's tumor is approx 13.5 cm or the size of a baseball. He said that they were "pushing the limit" on whether or not they could remove it at all or have to send her to chemo to shrink it before removing it.
To do the surgery, they will do what is called a thorocotomy, which is an incision on the right side of her lower chest. Eva's surgery is very complicated because 1) the size of the tumor and 2) the location. Her ribs are the main problem. His quote "on the complicated scale to 10, this is a 6." He said that the surgery will be from 4-6 hours depending on how long it takes to get it out.
He went through the different things that they might have to do to remove it, cut it in half, take it out whole, cut it away from whatever it is attached to, etc.
Bottom line is that they will do the best they can to get as much of it out tomorrow as possible. He said that they will know right away if they cannot remove it and they will get a biopsy, put in a port for chemo, and close her up.
Either way, Eva will have a port put in for her expected chemotherapy. Now, as you know, we do not have an accurate diagnosis yet and won't for several days up to a week. They will do a frozen section biopsy to get a preliminary diagnosis while they are in the OR. There is a VERY small chance that Eva will not have to have chemo but they want to put in the port anyway so they don't have to go in again. Fine by me.
They have told us that Eva will probably be in the PICU tomorrow night and back in her room the next day if all goes well.
Jon and I are here by ourselves tonight. Our bed is set up in the room but I doubt either of us will get any sleep. Honestly, we are both so scared.
You probably will not hear from me tomorrow, as the day goes. If I can get to a computer, I will be sure to post something. If not, I'll try to have one of my family members post.
He said that Eva's tumor is approx 13.5 cm or the size of a baseball. He said that they were "pushing the limit" on whether or not they could remove it at all or have to send her to chemo to shrink it before removing it.
To do the surgery, they will do what is called a thorocotomy, which is an incision on the right side of her lower chest. Eva's surgery is very complicated because 1) the size of the tumor and 2) the location. Her ribs are the main problem. His quote "on the complicated scale to 10, this is a 6." He said that the surgery will be from 4-6 hours depending on how long it takes to get it out.
He went through the different things that they might have to do to remove it, cut it in half, take it out whole, cut it away from whatever it is attached to, etc.
Bottom line is that they will do the best they can to get as much of it out tomorrow as possible. He said that they will know right away if they cannot remove it and they will get a biopsy, put in a port for chemo, and close her up.
Either way, Eva will have a port put in for her expected chemotherapy. Now, as you know, we do not have an accurate diagnosis yet and won't for several days up to a week. They will do a frozen section biopsy to get a preliminary diagnosis while they are in the OR. There is a VERY small chance that Eva will not have to have chemo but they want to put in the port anyway so they don't have to go in again. Fine by me.
They have told us that Eva will probably be in the PICU tomorrow night and back in her room the next day if all goes well.
Jon and I are here by ourselves tonight. Our bed is set up in the room but I doubt either of us will get any sleep. Honestly, we are both so scared.
You probably will not hear from me tomorrow, as the day goes. If I can get to a computer, I will be sure to post something. If not, I'll try to have one of my family members post.
Sunday
Well, today has been quiet, thankfully. I even got out of the hospital for a couple of hours thanks to my dear friend, Adrienne and my sister, Angela. We put together Jack's party favors for his class. As it turns out, Jack's birthday is Tuesday. For those who know him, feel free to wish him Happy Birthday on the big day! He's a big 4!
We are back at the hospital waiting for the surgeon to come to talk to us about tomorrow. Right now, the surgery is scheduled for 2p. The surgeon is trying to take her early but who knows. We will be playing that by ear.
Several folks have asked some questions that I thought I would answer as best I know:
1) We don't know how they are going to do the surgery. When we met with the surgeon, we still did not know if it had spread yet so that determined how he was to go in. We'll know tonight.
2) Eva is just fine. She walks the halls saying hello to EVERYONE as they go by. It is hard to imagine that that tumor is growing inside her little body because she is so unbelievably happy.
She is so hilarious. When the staff come in, she just stops where she is and sticks her arm out for them to test her. Smart one, that baby, that's for sure. Today, when the dr. came by, she ran to him, kissed him on the cheek and as he was leaving, took his hand to lead her down the hallway. If any ounce of him was not motivated to take good care of her before, I'm sure he is now! That was precious!
3) Jack is doing remarkably well. Today, he recorded a little message for his sister on her new "cell phone" that I had bought for her. Now, when you hit play, you hear "I love you, Fuzz!"
You know, I have to say, while I have a moment, if you ever doubt the kindness of strangers, all you need is a sick baby to reinforce your belief in goodness.
My parents had practically all of American Airlines in Raleigh and Washington making sure that they got on the plane here on Friday. Then, they got lost on the way to the hospital and a friendly policeman took 20 minutes to explain to them how to find their way here. My sister has the most incredible story I have ever heard of on Continental airlines yesterday. They were so amazing to her.
From the staff, to the strangers who have been praying for my daughter to the other parents here in the floor with us, we are so blessed, and I am most thankful.
Eva was baptised today. I hate that it had to happen this way and that I was such a bad mom to not do it properly in the church. I'll make it up to her when we get out of here, I swear!
Please keep her in special thoughts at 2p tomorrow.
Thank you, again,
K
We are back at the hospital waiting for the surgeon to come to talk to us about tomorrow. Right now, the surgery is scheduled for 2p. The surgeon is trying to take her early but who knows. We will be playing that by ear.
Several folks have asked some questions that I thought I would answer as best I know:
1) We don't know how they are going to do the surgery. When we met with the surgeon, we still did not know if it had spread yet so that determined how he was to go in. We'll know tonight.
2) Eva is just fine. She walks the halls saying hello to EVERYONE as they go by. It is hard to imagine that that tumor is growing inside her little body because she is so unbelievably happy.
She is so hilarious. When the staff come in, she just stops where she is and sticks her arm out for them to test her. Smart one, that baby, that's for sure. Today, when the dr. came by, she ran to him, kissed him on the cheek and as he was leaving, took his hand to lead her down the hallway. If any ounce of him was not motivated to take good care of her before, I'm sure he is now! That was precious!
3) Jack is doing remarkably well. Today, he recorded a little message for his sister on her new "cell phone" that I had bought for her. Now, when you hit play, you hear "I love you, Fuzz!"
You know, I have to say, while I have a moment, if you ever doubt the kindness of strangers, all you need is a sick baby to reinforce your belief in goodness.
My parents had practically all of American Airlines in Raleigh and Washington making sure that they got on the plane here on Friday. Then, they got lost on the way to the hospital and a friendly policeman took 20 minutes to explain to them how to find their way here. My sister has the most incredible story I have ever heard of on Continental airlines yesterday. They were so amazing to her.
From the staff, to the strangers who have been praying for my daughter to the other parents here in the floor with us, we are so blessed, and I am most thankful.
Eva was baptised today. I hate that it had to happen this way and that I was such a bad mom to not do it properly in the church. I'll make it up to her when we get out of here, I swear!
Please keep her in special thoughts at 2p tomorrow.
Thank you, again,
K
Saturday, March 01, 2008
Jack Update
So, file this under "Un-effin-believable!"
Today, Jon decided that he wanted to go home, take Jack out after his soccer game to their favorite pub for lunch, Trinity Hall. Then, they were going to come back to the hospital to visit us.
Off Jon goes. Eva and I were just hanging out at the hospital with my parents when Jon called.
Jack had a seizure at the Target.
They were in an ambulance on the way to Medical City where we are with Eva. Seriously, I do not know how my legs made it to the emergency room to meet the ambulance. Even now, it seems like a dream.
Turns out, in the world's cruelest coincidence, Jack had a febrile seizure for the first time because he had strep throat. We did a ct scan on him and that came back normal and also a chest xray. Jack is fine and at home with Dad tonight.
I thought that when I was there with Eva on Thursday, it was the worst point in being a parent. I did not know how it could be topped. Now, I will never doubt that things can just get worse. I'm not quite sure what God is testing me for but I swear, it has to be something really good.
I'm fine now but only for the grace of God and the wonderful nursing staff here at Medical City. They came in, picked me up from sobbing and hyper-ventilating on the floor, and guided my limp body to meet the ambulance.
Also, our wonderful pediatrician, Dr. Kennedy who came immediately upon hearing the news. She has been amazing to us and we would be so lost without her. By the way, Dr. Kennedy did correct me on an earlier post. She was NOT worried about brain damage to Eva from the seizure. She was worried about the fever. THAT is why we were here. I asked her forgiveness for my creative licensing! :)
A special shout out to Whit and Kelee for their help today in coming BACK to the hospital when I called them to tell them about Jack and for the delicious red wine I am drinking as we speak, thanks to Kelee. Unfortunately, the nurses could not arrange the IV margaritas I had requested, so this will have to do.
Thank you again for your calls and emails. Please forgive me if I am not quick to respond but I appreciate EVERYTHING!
And the hits just keep on coming....
ADDED BY JON ON SUNDAY:
Well, since Kristi experienced Eva Jane's seizure on Thursday, I suppose it was my turn on Saturday. All set for some Dad-Jack one-on-one time, we planned a trip to a couple of stores, lunch at our pub, and a trip to the hospital. Jack was hanging to me all morning, this being my first time back since I left for work on Thursday. He felt fine, and I attributed most of his behavior to our family situation.
As we headed to the checkout counter, Jack slumped over to the side of the cart and his eyes moved towards the ceiling. It looked as if he saw something interesting on the ceiling and was following it as I moved down the aisle. At the front, I said he needed to straighten up, lest I knock his head in the checkout line. Lifting him up, I thought he might be goofing off. But I immediately noticed he was warm, and his eyes were in the back of his head. At this point, no twitching or physical indications of a seizure. But I knew something was wrong.
I was standing next to a Target employee who asked if I needed help. I said, "I think my son is having a seizure." She called a few folks over. Then I saw some leg twitching and heard teeth clicking. The paramedics were called at my request. An unnamed male shopper with his two sons never identified himself as a doctor, but he stood about 10 feet away and would ask/say key things. "Has he ever had seizures before?" No. He then got the employees to get the paramedics.
I must say I was a rock through all of this. And the only reason is because I was a two-day veteran of the febrile seizure (never heard of it in my life before Thursday). Experience breeds confidence, I guess.
Our friend, Sara Wilson, who was quite familiar with our situation with Eva Jane, happened to be shopping and was standing near us. What must have been going on in her mind is beyond me. She was so kind to try to help.
Kudos to the Target lead at the desk. She calmly and quickly called 911.
The ambulance came very quickly. Within minutes we were in the ambulance. After some info passing and quick examination, we were heading to the hospital. Normally they transport to Presbyterian Hospital, but how many patients can say, "Would you please take us to Medical City since my wife and daughter are already there?" Off we went. My two disappointments: 1) Jack has no memory of our ride. 2) They didn't use the siren (and I was too chicken to ask).
Now the most dreaded of tasks: Calling Kristi. How in the hell do I tell her?
Today, Jon decided that he wanted to go home, take Jack out after his soccer game to their favorite pub for lunch, Trinity Hall. Then, they were going to come back to the hospital to visit us.
Off Jon goes. Eva and I were just hanging out at the hospital with my parents when Jon called.
Jack had a seizure at the Target.
They were in an ambulance on the way to Medical City where we are with Eva. Seriously, I do not know how my legs made it to the emergency room to meet the ambulance. Even now, it seems like a dream.
Turns out, in the world's cruelest coincidence, Jack had a febrile seizure for the first time because he had strep throat. We did a ct scan on him and that came back normal and also a chest xray. Jack is fine and at home with Dad tonight.
I thought that when I was there with Eva on Thursday, it was the worst point in being a parent. I did not know how it could be topped. Now, I will never doubt that things can just get worse. I'm not quite sure what God is testing me for but I swear, it has to be something really good.
I'm fine now but only for the grace of God and the wonderful nursing staff here at Medical City. They came in, picked me up from sobbing and hyper-ventilating on the floor, and guided my limp body to meet the ambulance.
Also, our wonderful pediatrician, Dr. Kennedy who came immediately upon hearing the news. She has been amazing to us and we would be so lost without her. By the way, Dr. Kennedy did correct me on an earlier post. She was NOT worried about brain damage to Eva from the seizure. She was worried about the fever. THAT is why we were here. I asked her forgiveness for my creative licensing! :)
A special shout out to Whit and Kelee for their help today in coming BACK to the hospital when I called them to tell them about Jack and for the delicious red wine I am drinking as we speak, thanks to Kelee. Unfortunately, the nurses could not arrange the IV margaritas I had requested, so this will have to do.
Thank you again for your calls and emails. Please forgive me if I am not quick to respond but I appreciate EVERYTHING!
And the hits just keep on coming....
ADDED BY JON ON SUNDAY:
Well, since Kristi experienced Eva Jane's seizure on Thursday, I suppose it was my turn on Saturday. All set for some Dad-Jack one-on-one time, we planned a trip to a couple of stores, lunch at our pub, and a trip to the hospital. Jack was hanging to me all morning, this being my first time back since I left for work on Thursday. He felt fine, and I attributed most of his behavior to our family situation.
As we headed to the checkout counter, Jack slumped over to the side of the cart and his eyes moved towards the ceiling. It looked as if he saw something interesting on the ceiling and was following it as I moved down the aisle. At the front, I said he needed to straighten up, lest I knock his head in the checkout line. Lifting him up, I thought he might be goofing off. But I immediately noticed he was warm, and his eyes were in the back of his head. At this point, no twitching or physical indications of a seizure. But I knew something was wrong.
I was standing next to a Target employee who asked if I needed help. I said, "I think my son is having a seizure." She called a few folks over. Then I saw some leg twitching and heard teeth clicking. The paramedics were called at my request. An unnamed male shopper with his two sons never identified himself as a doctor, but he stood about 10 feet away and would ask/say key things. "Has he ever had seizures before?" No. He then got the employees to get the paramedics.
I must say I was a rock through all of this. And the only reason is because I was a two-day veteran of the febrile seizure (never heard of it in my life before Thursday). Experience breeds confidence, I guess.
Our friend, Sara Wilson, who was quite familiar with our situation with Eva Jane, happened to be shopping and was standing near us. What must have been going on in her mind is beyond me. She was so kind to try to help.
Kudos to the Target lead at the desk. She calmly and quickly called 911.
The ambulance came very quickly. Within minutes we were in the ambulance. After some info passing and quick examination, we were heading to the hospital. Normally they transport to Presbyterian Hospital, but how many patients can say, "Would you please take us to Medical City since my wife and daughter are already there?" Off we went. My two disappointments: 1) Jack has no memory of our ride. 2) They didn't use the siren (and I was too chicken to ask).
Now the most dreaded of tasks: Calling Kristi. How in the hell do I tell her?
Another Nubbin Update
We just spoke with the doctor this morning. The bone scan also came back negative! That is just terrific news.
Bottom line is that we still do not know what it is but whatever it is, from less bad to really bad, we've caught it early enought that it has not spread anywhere else and I'll take it!
Thank you all so much for your continued emails and support!!!
Bottom line is that we still do not know what it is but whatever it is, from less bad to really bad, we've caught it early enought that it has not spread anywhere else and I'll take it!
Thank you all so much for your continued emails and support!!!
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