We're all home at last!
Got back from North Carolina on Monday and broke Eva out of the hospital! Wahoo! She's doing just fine! They sent us home with IV antibiotics, which Jon and I I get to administer but still, we're home.
Things are still set for Monday's chemo. We are going to check into the hospital for the night, get an MRI and get chemo on Monday and Tuesday. Then, we go home.
I'm heading to Norfolk tomorrow for Dyda's funeral. Strange, I feel such at peace about it. I think that all the crying was such a release of all the tension I had been carrying for so long. I really feel better. Dyda, thanks, again!
Going to miss Halloween, which saddens me deeply. It is my favorite holiday outside of christmas. I always put on this witch hat and answer the door while Jon takes the kids out trick or treating. I sure love to see all the kids in their costumes! Alas, I will miss it.
That's about it. I'm up because I have to change Eva's medicine but I sure can't wait to go to bed!
Wednesday, October 29, 2008
Thursday, October 23, 2008
A Love Letter
Dear Dyda,
Well, I always knew someday I would write this letter to you. I had just hoped that it would be a bit longer until I did. Alas, God had other plans.
You see, I have always considered myself one of the luckiest persons ever to be to not only have one incredible father, but two. Bama and you were like the extra set of parents any gal of seven siblings needed. Not only were you MY grandfather, but you managed to adopt just about every friend that I have ever had. Nearly all my friends tell me that they have always considered you THEIR granfather, as well.
All my earliest memories have you in it. Dyda, you I often think of those weekends in Snug Harbor, all the kids running around, you on those mini-bikes and dazzling us all with your ability to water ski. You, Daddy and Uncle Denny shooting off your firework display for the cheering audience each Forth of July remains the highlight of my childhood. You had infinite patience with those rugrats running about climbing on your things, breaking your things, moving your things. Maybe you didn't, really, but it sure felt like you did to us.
As I got older, my relationship with you just blossomed. I cannot remember any situation that I might have found myself in during my teen years that I did not tell you and Bama. As a matter of fact, I remember very clearly driving home late one Friday night when I was in high school. I was pulled over for the first of my many speeding tickets. The police officer said, "Well, Missy, where are you coming from at this late hour?" I said, "My Grandparent's house". He said, "Yeah, right. On a Friday night?" I was like, "Yeah, where else would I be?" He let me off (so thank you for that, by the way).
When life got tough in Atlanta, you opened your home to me so that I could finish school in my mid-twenties. That time, our "roomie" time, means more to me than I can say. You saw me through many boyfriends (most of whom you hated but would NEVER let me know until we broke up!) but we always kept our Thursday night date nights at the Arby's. Why did I need a boyfriend when I had my main squeeze at home?
I also remember our Jeopardy nights when I had to work the night shift. I would take my 15 minute break just at the end of Jeopardy so we could play our little game, Guess the Final Jeopardy Answer Based Only on the Category. Maybe we should have thought of a better title for that game. But, nonetheless, your answer to my answer was always the same. "Oh, no, no, no, that's too obvious!"
I was also in awe of your ablity to fix anything. Anything at all. I would come home with my car "acting funny", a few minutes later, it was fine. I used a hairdryer that you rewired and rigged with duct tape for about 7 years. Even when your sight was failing, you were a marvelous instructor. "See that red line, cut it." "Uh, seriously, Dyda? I'm not a mechanic at all." "Dahlin' cut it!" Ok! All was always well.
As I got married and moved to Dallas, distance separated us, again, but not certainly in my heart. Dyda, seeing you with Bama has always served as my role model for a perfect marriage. You were two people who loved each other desperately, always respectful of each other and had ability to make the other laugh so hard! You two were truly a united front, a force to be reckoned with. Now that I am married, I know that took such hard work but you two made it look so easy.
Dyda, more than anything, I'll miss seeing your wonderful face and hearing those words, "Hi Daaahhhhlin', Hi Sugar Baby!!!!" as I enter the room.
I know you are up there with Bama, Uncle Denny, your Dad, Mom and brother, Alice, and all those whom you have loved. We got you for 93 years, so, I guess it is just their turn.
I love you so much, my handsome fella.
Always,
Your Roomie
Settling in for the Long Haul
Well, it looks like we're going to be here for a while.
Dr. Goldman came in this morning and told us that she did, indeed, grow staff in the culture. What that means is that we need to give her IV antibiotics to get this under control in order to save her port.
He told us that we were going to be here until the culture came back negative and then seven days after that. So, the earliest we can go home is next Friday. He did say that if her counts were up, we might be able to negotiate going home next Monday with an at home nurse. Maybe. So, that's what we're hoping for.
Good news about being in the hospital? Chocolate Thunder Cake. I mean, really, let's look at the bright side, shall we? What do they put in that little bit of deliciousness? It is a fork full of heaven.
Dr. Goldman came in this morning and told us that she did, indeed, grow staff in the culture. What that means is that we need to give her IV antibiotics to get this under control in order to save her port.
He told us that we were going to be here until the culture came back negative and then seven days after that. So, the earliest we can go home is next Friday. He did say that if her counts were up, we might be able to negotiate going home next Monday with an at home nurse. Maybe. So, that's what we're hoping for.
Good news about being in the hospital? Chocolate Thunder Cake. I mean, really, let's look at the bright side, shall we? What do they put in that little bit of deliciousness? It is a fork full of heaven.
Wednesday, October 22, 2008
A Little Update
Just a quick update.
Eva had a rough night. Jon was with her because I had a Board meeting this afternoon. When I left last night, she was just this little limp bit of nothin', clinging to Jon and me.
This morning, they found that her cultures grew a staff (they think) infection. So, they changed her antibiotics. They also found that her counts were low on all around so this afternoon, they gave her a transfusion.
She's MUCH better now, almost back to her old self.
Here's the bottom line, we're here for a while. The doctor said we could leave Monday at the earliest. So, we're settling on in.
Thanks so much for all your notes, thoughts and prayers!!
Eva had a rough night. Jon was with her because I had a Board meeting this afternoon. When I left last night, she was just this little limp bit of nothin', clinging to Jon and me.
This morning, they found that her cultures grew a staff (they think) infection. So, they changed her antibiotics. They also found that her counts were low on all around so this afternoon, they gave her a transfusion.
She's MUCH better now, almost back to her old self.
Here's the bottom line, we're here for a while. The doctor said we could leave Monday at the earliest. So, we're settling on in.
Thanks so much for all your notes, thoughts and prayers!!
Oh, how quickly things change!
Well, had fully prepared to come home and write a silly confessional, my first in a bit. However, Nubbin had something else in mind.
Mother is here and when I walked in the door, she said that she thought Eva felt warm. She had taken her temp and it was 99. I took her temp, it was 101. Off to the hospital.
So, that's where we are for the next couple of days while they try to find out why her fever is spiking.
Yesterday, Jon took her to the doctor. I thought for sure her counts were high because Monday, on her birthday, she literally ran in the yard for 40 solid minutes while the family played freeze tag. Turns out that her WBC was .8 (should be 4.0-11.0) and her ANC was 0. The doctor told Jon just to keep doing the neupogen shots and keep her on at home lock down until Friday. Well, that plan just did not work.
Last night, you would never know she was the same gal who ran in circles just 24 hours ago.
She'll be ok, we just have to find out what is causing the fever.
More to come!
Mother is here and when I walked in the door, she said that she thought Eva felt warm. She had taken her temp and it was 99. I took her temp, it was 101. Off to the hospital.
So, that's where we are for the next couple of days while they try to find out why her fever is spiking.
Yesterday, Jon took her to the doctor. I thought for sure her counts were high because Monday, on her birthday, she literally ran in the yard for 40 solid minutes while the family played freeze tag. Turns out that her WBC was .8 (should be 4.0-11.0) and her ANC was 0. The doctor told Jon just to keep doing the neupogen shots and keep her on at home lock down until Friday. Well, that plan just did not work.
Last night, you would never know she was the same gal who ran in circles just 24 hours ago.
She'll be ok, we just have to find out what is causing the fever.
More to come!
Monday, October 20, 2008
Happy Birthday to Eva Squared!
Happy Birthday to my two favorite Eva's!!!!
Eva is a big 2 and Grandma Eva, well, she's a little older!
I'm way too emotional about these two gals to write much more other than I love them both more than I can say.
Happy Birthday!!!!
Friday, October 17, 2008
Yuktoberfest!
My pal, Laura, over at Catholic Teacher Musings asked for a Bad Haiku Friday Festival, here's my entry.
At the pumpkin patch,
Jack and Eva make their choice.
No rotting gourds, please.
Transfusion-Free Friday!
Well, it's a new holiday, Transfusion-Free Friday!
Took Eva to the dr. and her counts were terrific! I'm sure it has lots to do with the neupogen shots and they think that they might have to transfuse on Tuesday but for now, we'll celebrate OUR holiday!
I'm so happy her counts are so good as we're heading into her birthday weekend. Mother is here (hooray!) and it is just so fun to watch the two of them have fun at the next table while I work.
Happy Transfusion-Free Friday, everyone!
Took Eva to the dr. and her counts were terrific! I'm sure it has lots to do with the neupogen shots and they think that they might have to transfuse on Tuesday but for now, we'll celebrate OUR holiday!
I'm so happy her counts are so good as we're heading into her birthday weekend. Mother is here (hooray!) and it is just so fun to watch the two of them have fun at the next table while I work.
Happy Transfusion-Free Friday, everyone!
Wednesday, October 15, 2008
Hot Fuzz
When Eva was very little, Jack always called her Fuzz. When asked, he would say that it was because Eva had fuzzy hair (she was a baldy). Well, that look is back, again.
Here she is. For me, I've had my cry-out in the car on the way home. I am saved, of course, by the fact that she is so adorable with or without hair.
Thank you, Stephen, again for your friendship and your superior hair dressing skills!
Here she is. For me, I've had my cry-out in the car on the way home. I am saved, of course, by the fact that she is so adorable with or without hair.
Thank you, Stephen, again for your friendship and your superior hair dressing skills!
Tuesday, October 14, 2008
Oh Oh, We're Halfway There, Oh Oh Livin' on a Prayer!
You know, I always love the days when I can sneak in a Bon Jovi reference into my blog. I loves me some Bon Jovi.
Well, we are, in fact, halfway there. Eva had her second round of chemo yesterday. It went ok. Last night, of course, the vomiting arrived and Jon and I were all hands on deck. Poor Nubbin, she did not know what hit her. Jon and I are alternating nights and it was mine last night. So, it was a long night.
Several of you have been asking exactly what Eva is taking, here's the plan:
Round 1-Done
Carboplatin-1 hr in 1 day
Etoposide-1 hr per day for 3 days
Round 2-Done
Carboplatin-1 hr in 1 day
Cyclophosphamide-1 hr in 1 day
Doxorubicin-1 hr in 1 day
Round 3
Cyclophosphamide-1 hr in 1 day
Etoposide-1 hr per day for 3 days
Round 4
Carboplatin-1 hr in 1 day
Etoposide-1 hr per day for 3 days
Doxorubicin-1 hr for 1 day
Each round is three weeks apart from the other one. If we keep to schedule, meaning Eva can receive chemo on the days that she is scheduled, we will finish the week of Thanksgiving.
The day is long because you need two hours of IV hydration prior to chemo and two hours after. She also gets a shot for nausea that takes 15 min and a 30 min antibiotic.
So, there is lots of time to kill in a little room at the doctor's office. Eva felt fine, though, and asked to see her Imagination Movers dvd every thirty seconds. Eva, do you want to eat? Answer, "Movers!!!" Eva, do you want your paci? Answer, "Movers!!" I tried to mix it up a little bit and found a High School Musical cd in the Child Life area. Any music is fine by Eva. Alas, she could not be dissuaded from her beloved "Movers!!!" By the time it got to "We're All in this Together", Eva would not stop saying "Movers! Movers!! MOVERS!!!" Fine.
Yesterday, her counts were low. She had such high counts last week I think I was riding high a bit. Well, they were not a "false reading" but they were definitely altered by her neupogen shots. Dr. Lenarsky said that while her counts were low, she was "normal for a chemotherapy patient."
Her counts will continue to go down and be at their lowest on Saturday, Sunday and Monday. Eva's 2nd birthday is Monday so I'm really hoping she feels well enough to celebrate some.
Today, she is doing well. Her beloved Imagination Movers have a tv show in Disney now so we have it taped on our DVR. She has been asking all day to watch it and demands that we dance along with her. If we are not in the room, she comes to get us and just yells, "Movers, Dance!" Quite the dancing dictator, Little Nubbin. I wish I had filmed her in the crib dancing yesterday and today in the den. Hilarious.
Tomorrow, I'm taking her to get her head shaved. She's lost so much hair even since yesterday, there is no need to keep the few strands she has left because you can't really apply any sunscreen without making a big mess. I think I'll be ok. Think.
Anyway, here she is in her crib yesterday at the doctor's office. Paci in her mouth, paci in her hand and you can't see it but she is holding another paci in the other hand. She cracks me up. My sister gave her the shirt she is wearing. She is, indeed, one brave chick.
Thursday, October 09, 2008
Random Thoughts
Ok, won't call this a confession because actually, it is Thursday night. So, it is now, just random thoughts. Forgive my stream of consciousness.
Where have I been?
Well, apparently working 5:30a-5:00p can make you awfully tired. For the past two weeks, I've been going to bed at 8:30.
***************
Up with the Eva news first. She's doing great. Great. So well, in fact, that our doctors told us we did not need to come in this week for counts. Her WBC is higher than mine, I think.
We start chemo round 2 on Monday. I'm not looking forward to that at all.
*****************
Jon told me yesterday while I was sitting at my desk that Eva's hair has started to fall out. I completely fell apart at my desk and was useless the rest of the day. Just could not get it together about it. I think I had been in a bit of denial but when the hair started falling out, it just became so real. I just kept thinking, is she scared because she does not know what is going on?
So, when I went home, she came running up and pulled a wad of her hair out, said, "Look Mommy!" and then busted out laughing so hard she fell on the floor. So, to Eva, it's just a fun new party trick. Hey, look at me, betcha I can do something YOU can't do!
That makes it a bit easier.
For us, Jon said when you kiss her it is like kissing a cat. You get a mouthful of hair.
****************
Have had a busy week. Can't even talk about all the goings on because it has been so much. Car blew a tire and had a huge adventure that day, went to a cocktail party for the King Tut exhibit here in Dallas, saw the exhibit twice, went to the state fair, work work work work. I've got lots to blog about so will catch up when I get back.
SOOO excited but am heading to VA for my 20 year high school reunion this weekend! YIPPEE! I'm staying with my girlfriend, SG, who has said that I don't need to even get out of bed this weekend. Ahhhhhhhhh....
Where have I been?
Well, apparently working 5:30a-5:00p can make you awfully tired. For the past two weeks, I've been going to bed at 8:30.
***************
Up with the Eva news first. She's doing great. Great. So well, in fact, that our doctors told us we did not need to come in this week for counts. Her WBC is higher than mine, I think.
We start chemo round 2 on Monday. I'm not looking forward to that at all.
*****************
Jon told me yesterday while I was sitting at my desk that Eva's hair has started to fall out. I completely fell apart at my desk and was useless the rest of the day. Just could not get it together about it. I think I had been in a bit of denial but when the hair started falling out, it just became so real. I just kept thinking, is she scared because she does not know what is going on?
So, when I went home, she came running up and pulled a wad of her hair out, said, "Look Mommy!" and then busted out laughing so hard she fell on the floor. So, to Eva, it's just a fun new party trick. Hey, look at me, betcha I can do something YOU can't do!
That makes it a bit easier.
For us, Jon said when you kiss her it is like kissing a cat. You get a mouthful of hair.
****************
Have had a busy week. Can't even talk about all the goings on because it has been so much. Car blew a tire and had a huge adventure that day, went to a cocktail party for the King Tut exhibit here in Dallas, saw the exhibit twice, went to the state fair, work work work work. I've got lots to blog about so will catch up when I get back.
SOOO excited but am heading to VA for my 20 year high school reunion this weekend! YIPPEE! I'm staying with my girlfriend, SG, who has said that I don't need to even get out of bed this weekend. Ahhhhhhhhh....
Tuesday, September 30, 2008
No Chips for Jack Today
This week, I've been going to work at 5:30am in hopes that I can leave earlier and be home more. Jon is going to work a bit later and staying later. So far, this schedule has worked (day 2, anyway).
This morning, I sat down at my computer to do a little work at 5am before I left for the office. I heard this rustling in my pantry. I thought, oh man, I have another possum under the house. Better call my guy to have him set another trap!
I begin to make Jack's lunch and head into the pantry for the chips. Well, all of a sudden a giant mouse/rat came running at me!
I screamed bloody murder!!!
Jon comes running in wondering what was wrong. "Chips. Pantry. Mouse." was all I could muster.
Turns out that my big strong husband has but one weakness when it comes to critters...rodents. I feel like everyone has something. For me, it is cockroaches. They scare the pants off of me. Maybe it was living in Savannah where they fly at your head or maybe it was just one too many times I swept one up thinking it was dead and it turned over and scurried away on my arm. I don't know but I don't touch them. At all.
Now, rodents on the other hand, I'm ok with getting rid of them as long as they don't come charging out of the pantry at me.
Time for me to put my big girl panties on and build a mousetrap, myself. I happened to have LOVED the game Mousetrap growing up. Maybe it was just good training for my future rodent extermination duties.
So, I immediately jump into game mode. Here is what I built in a matter of minutes. Not bad, eh?
Jon had to reach into the pantry to grab the peanut butter so that I could fashion the trap. That was HILARIOUS! Anyway, the mouse/rat was going to run up the ramp to get to the peanut butter and then tumble into the trash can. Jon was then going to carry the trash can out and set him free. Not that I want mice here but no need to kill it. However, Eva is immuno-compromised and I'm sorry, it had to go RIGHT NOW!
I leave for work and leave my hubby in charge of the disposal. I get to work and am sitting at my desk. Jon called. "It's in the kiiiitcheeeennn!!!" Somehow it had escaped my trap.
Alas, time for your demise mouse/rat. You had your chance. Now, for all you animal folks, don't go writing mean notes about how horrible I am to kill the mouse/rat. It CANNOT stay in my house and I have no time to mess with this. That mouse/rat chose the wrong house to enter. End of story.
So, I left downtown, headed to the Depot, bought my supplies and headed home. Set all the traps in the kitchen and then I looked at my watch. 7am.
We did not catch our friend today but I've reset all traps for tonight. Maybe tomorrow Jack can have his chips. We'll see....
Friday, September 26, 2008
Eva's First Haircut
Well, we're home. It was a harrowing 48 hours at home but it is over now and we have our little Eva back.
They told me that Eva's hair would be falling out in the next couple of weeks. Since I did not want Eva's first haircut to be chemotherapy, I thought I would go ahead and have her hair cut. My hairdresser Stephen was so amazing to do this for me.
Anyway, here are the results!
They told me that Eva's hair would be falling out in the next couple of weeks. Since I did not want Eva's first haircut to be chemotherapy, I thought I would go ahead and have her hair cut. My hairdresser Stephen was so amazing to do this for me.
Anyway, here are the results!
Before
After
Bad Ass Eva and her kickin' cancer's butt 'do!
Not to be outdone, Big Brother Jack needed the same look.
Wednesday, September 24, 2008
We're Going Home!
Wahoo! One day earlier than planned. Eva is currently getting her last chemo treatment of this round and we'll be home!
Here she is getting her last chemo treatment.
Here she is getting her last chemo treatment.
Tuesday, September 23, 2008
Jack Update pt 2
Well, no trip to the hospital for Eva would be complete without her big brother Jack having some sort of "episode". As you all might recall, way back when in February when we did not know what exactly was wrong with Eva, Jack had a trip to the hospital.
Today, he was sooooo excited to come to see Eva. We had planned all along that on Tuesday, he would come by the hospital and meet with the child life specialist to talk to him about Eva's port, treatment, hair loss, etc.
This week, I could tell that Eva was really missing her big brother. I had given her two dolls before we came. One, I told her was Eva and the other one was Jack. She has been snuggling with her Jack doll almost non-stop. She also kept looking at the picture in my phone and just saying, "Jack and Eeeeeva."
Angela comes up with Jack this afternoon and he is so happy to be there, his cheeks were flushed. He went to the store and bought Eva a balloon. We get him up to meet with the child life specialist. They come out about 45 min later and she immediately says that Jack is one of the most inquisitive children she has ever met. I was shocked by that statement! What? Jack, inquisitive?
Anyway, while we were sitting on the floor outside of Eva's room, Jack was explaining to me how Eva's port worked. I looked at his cheeks and they were still flushed. I asked Jack why his cheeks were red and he said that he was scratching it. Uh oh.
I immediately stripped him down and looked to see if I could see any red bumps on his body. He had a few. The nurse took him over to the regular ped side to see if someone there could identify what was wrong with him. It was "Fifth's Disease", a highly contagious virus. Every nurse on the floor jumped on the computer to find out what this meant. We immediately called Dr. Kennedy (our ped) to see if Jack could even see Eva at all.
It was a good news/bad news. Good news is that once the rash appears, you are no longer contagious. Bad news is that he's probably had this for over a week without us knowing so Eva is already exposed. Ugh.
So, just for precaution, we let Jack in the room to sit on the floor and just wave at his sister.
To say that Eva had been grumpy all day was an understatement. Totally understandable but an understatement. When Big Brother Jack walked into that room, Eva let out the largest squeal I have ever heard. Jaaaaaaaack!!!!!!!!! She just laughed and talked to him and laughed and laughed. He gave her (through us) his Dora balloon and she was so happy. It completely changed the day for her.
Ahh, the power of a sibling visit. I know this first hand. I don't know what I'll do when my sister goes home. Maybe I need an Angela doll.
Today, he was sooooo excited to come to see Eva. We had planned all along that on Tuesday, he would come by the hospital and meet with the child life specialist to talk to him about Eva's port, treatment, hair loss, etc.
This week, I could tell that Eva was really missing her big brother. I had given her two dolls before we came. One, I told her was Eva and the other one was Jack. She has been snuggling with her Jack doll almost non-stop. She also kept looking at the picture in my phone and just saying, "Jack and Eeeeeva."
Angela comes up with Jack this afternoon and he is so happy to be there, his cheeks were flushed. He went to the store and bought Eva a balloon. We get him up to meet with the child life specialist. They come out about 45 min later and she immediately says that Jack is one of the most inquisitive children she has ever met. I was shocked by that statement! What? Jack, inquisitive?
Anyway, while we were sitting on the floor outside of Eva's room, Jack was explaining to me how Eva's port worked. I looked at his cheeks and they were still flushed. I asked Jack why his cheeks were red and he said that he was scratching it. Uh oh.
I immediately stripped him down and looked to see if I could see any red bumps on his body. He had a few. The nurse took him over to the regular ped side to see if someone there could identify what was wrong with him. It was "Fifth's Disease", a highly contagious virus. Every nurse on the floor jumped on the computer to find out what this meant. We immediately called Dr. Kennedy (our ped) to see if Jack could even see Eva at all.
It was a good news/bad news. Good news is that once the rash appears, you are no longer contagious. Bad news is that he's probably had this for over a week without us knowing so Eva is already exposed. Ugh.
So, just for precaution, we let Jack in the room to sit on the floor and just wave at his sister.
To say that Eva had been grumpy all day was an understatement. Totally understandable but an understatement. When Big Brother Jack walked into that room, Eva let out the largest squeal I have ever heard. Jaaaaaaaack!!!!!!!!! She just laughed and talked to him and laughed and laughed. He gave her (through us) his Dora balloon and she was so happy. It completely changed the day for her.
Ahh, the power of a sibling visit. I know this first hand. I don't know what I'll do when my sister goes home. Maybe I need an Angela doll.
Another Update
We're in Medical City on day 3.
As you know, Eva had a port put in and started chemo last night. We waited and waited all day to start the chemo but it finally began at 10p! Good news is that Eva slept through the whole thing.
She seemed to do ok last night but this morning was a bit tough. She threw up all over the place. We got her vomiting under control and she rested.
Last night, we gave her two of the four drugs that she will get. Each of these drugs has a different really exciting potential side effect. One of these drugs causes nausea (check). The other one causes heart issues (wahoo, not check). They have to closely monitor her during the time she is receiving this drug. She gets this drug tonight and tomorrow. The next two, coming in the next round, can cause leukemia and hair loss, respectively, so sign us up!
Today, we had a bone scan. My sister, Angela, and I had taken a moment to slip out to the Y for some exercise when she left. Jon had the pleasure. By pleasure, I mean Jon got to experience what we have learned is called "Emersion Dementia." Fortunately, it did not last as long as it did when I had her with the CT and MRI.
Dr. Lenarsky came in and told us that the bone marrow aspirate came back ok, her belly scan came back ok, and her bone scan from this morning came back ok. We are still waiting on the biopsy but he feels pretty good we're in the clear there. Here is what that means: the neuroblastoma has not spread to her bone marrow, her belly or attached itself to any bones. That is a good thing.
The plan is for us to leave tomorrow after her chemo treatment. It is overwhelming what we have to do for Eva at home care. Good news is that we are going to have our nanny trained tomorrow so she'll be ready and an extra pair of hands for us.
Anyway, that's the story. Thank you, again, so much for your thoughts and prayers!
As you know, Eva had a port put in and started chemo last night. We waited and waited all day to start the chemo but it finally began at 10p! Good news is that Eva slept through the whole thing.
She seemed to do ok last night but this morning was a bit tough. She threw up all over the place. We got her vomiting under control and she rested.
Last night, we gave her two of the four drugs that she will get. Each of these drugs has a different really exciting potential side effect. One of these drugs causes nausea (check). The other one causes heart issues (wahoo, not check). They have to closely monitor her during the time she is receiving this drug. She gets this drug tonight and tomorrow. The next two, coming in the next round, can cause leukemia and hair loss, respectively, so sign us up!
Today, we had a bone scan. My sister, Angela, and I had taken a moment to slip out to the Y for some exercise when she left. Jon had the pleasure. By pleasure, I mean Jon got to experience what we have learned is called "Emersion Dementia." Fortunately, it did not last as long as it did when I had her with the CT and MRI.
Dr. Lenarsky came in and told us that the bone marrow aspirate came back ok, her belly scan came back ok, and her bone scan from this morning came back ok. We are still waiting on the biopsy but he feels pretty good we're in the clear there. Here is what that means: the neuroblastoma has not spread to her bone marrow, her belly or attached itself to any bones. That is a good thing.
The plan is for us to leave tomorrow after her chemo treatment. It is overwhelming what we have to do for Eva at home care. Good news is that we are going to have our nanny trained tomorrow so she'll be ready and an extra pair of hands for us.
Anyway, that's the story. Thank you, again, so much for your thoughts and prayers!
Monday, September 22, 2008
Surgery Update
Just a quick note. We're out of surgery and it went very well.
Eva is just coming around now and is READY for some food. I hope it arrives soon!! Girl likes to eat!
They are starting chemo at 3:30 today.
Thank you all so much for your continued prayers. More soon.
Eva is just coming around now and is READY for some food. I hope it arrives soon!! Girl likes to eat!
They are starting chemo at 3:30 today.
Thank you all so much for your continued prayers. More soon.
Sunday, September 21, 2008
Greetings from Medical City!
Well, here we are back at Medical City. We arrived this evening in enough time to get settled before Eva had to go to bed. We got the room next to our old room. The good news is that this room has a full panel of windows so it is so bright and sunny.
Tomorrow, we have the port surgery at 9am and then start chemo in the afternoon.
We're doing ok. I am lifted by my sister's and my in-law's arrival. Last night, my mother-in-law was kind enough to keep the kids so Jon and I could go out for a bit. We went to the pub (no big surprise).
Today was a bit hard, I must admit. When my sister arrived, she brought Eva this tshirt that has a chick on it and it says, "One Brave Chick". I, of course, burst into tears at the table. Then, later on, I went to Target by myself to pick up just a few final things for our stay. When I was checking out, it hit me what I was doing and I burst into tears, again.
It was quite embarrassing dashing out of the Target, I'm not sure what the cashier thought was wrong. I mean, she was probably thinking, Mam, it is just dish soap and a sippy cup. It is ok!
You see, while I am a huge fan of PDA--Public Displays of Affection (I always hug and kiss my friends hello and good bye, I'm very french that way), I am NOT a fan of PDE--Public Displays of Emotion. Ask Jon. Nothing mortifies me more than PDE. An exception to this is Extreme Happiness, which I pretty much exude most of the time. But sadness, well, that's another story altogether. Privately, water faucet. Publicly, stone. If I happen to break down in front of someone, I spend the next three hours apologizing.
I guess, I'll just apologize in advance for my melt downs these next few months. For all my friends and family seeing me over the next several months, they might have to forgive me just this once.
I'll be back to my jovial self sometime in December when this is all over.
More on Eva tomorrow. Please keep Jack and her in your prayers.
Tomorrow, we have the port surgery at 9am and then start chemo in the afternoon.
We're doing ok. I am lifted by my sister's and my in-law's arrival. Last night, my mother-in-law was kind enough to keep the kids so Jon and I could go out for a bit. We went to the pub (no big surprise).
Today was a bit hard, I must admit. When my sister arrived, she brought Eva this tshirt that has a chick on it and it says, "One Brave Chick". I, of course, burst into tears at the table. Then, later on, I went to Target by myself to pick up just a few final things for our stay. When I was checking out, it hit me what I was doing and I burst into tears, again.
It was quite embarrassing dashing out of the Target, I'm not sure what the cashier thought was wrong. I mean, she was probably thinking, Mam, it is just dish soap and a sippy cup. It is ok!
You see, while I am a huge fan of PDA--Public Displays of Affection (I always hug and kiss my friends hello and good bye, I'm very french that way), I am NOT a fan of PDE--Public Displays of Emotion. Ask Jon. Nothing mortifies me more than PDE. An exception to this is Extreme Happiness, which I pretty much exude most of the time. But sadness, well, that's another story altogether. Privately, water faucet. Publicly, stone. If I happen to break down in front of someone, I spend the next three hours apologizing.
I guess, I'll just apologize in advance for my melt downs these next few months. For all my friends and family seeing me over the next several months, they might have to forgive me just this once.
I'll be back to my jovial self sometime in December when this is all over.
More on Eva tomorrow. Please keep Jack and her in your prayers.
Parenthood
Every so often, there is a movie you see that makes you say, wow, this is really me. For me, that movie is that 1989 gem, Parenthood. My family is very similar to the Buckmans, minus, of course, the horrible dad. My dad is just fine. Oh, and I don't have a nephew named, "Kool" but my siblings have not stopped having kids yet, so you never know, really.
Jon and I joke about that movie quite frequently. When Jack was little, we used to laugh that we had the Justin character. Jack would LITERALLY put buckets on his head and bang his head in the wall. We would say, "he likes to butt things with his head" and others would reply, "you must be so proud." Just like the movie.
Jack has moved from Justin to Kevin, the older boy, with the social problems. We sat in the school director's office the other day while they told us (what we already knew) that Jack has some social issues. He's disruptive in the class, hits other children and takes up a ton of the teacher's time. They are, by the way, so great and really want to help Jack. That said, I was thrown back in to that movie and almost shouted, "Jon smoked grass!"
On Saturday, we went to the soccer field for Jack's first game of the season. We played soccer for two seasons and in 16 games, Jack probably touched the ball twice. Maybe. We signed him up fully expecting the same "You made me play second base!" results. When we got to one of the practices, I heard another child say, "Oh, great, it's Jack B." I just died inside.
This Saturday, however, he was on fire. He was moving all over the place with the ball and even made one of the two goals that the team scored! Jon and I were so proud, we went screaming out to the field to hug him. When Jack scored the goal, I heard one of the kids say, "Did you see what Jack B. did? He scored a great goal!" I burst into tears.
Jack plays the field! (Thanks, Nicole for the pic!)I keep thinking about the grandmother's quote when she was talking about carnival rides as a metaphor for life. She said, "I like the roller coaster. You get more out of it." You said it, Grandma, bring on the coaster.
Friday, September 12, 2008
Camp Chemo
Well, it looks like chemo for Eva. The tumor has grown and there is another one coming on as well on the other side.
Good news is that her cathecholimines (urine levels) were still normal which means that the tumor is calcifiying (turning into non-malignant tumors).
But, with the new growth, the doctor just felt that it was time to start attacking things. I'm ok with that!
Here's the info: We'll be admitted to Medical City on the 21st (sunday). Eva will have a port put in on the 22nd in the AM. We will stay at Medical City for four days while she gets chemo. There are four rounds of chemo, each 21 days apart. The doctor is hopeful that once this is all done, it is all done. No more cancer. Here's to hoping!
Anyway, that's the quick update. More to come.
I'm fine and thankful that my friend Whitney was at the appointment with me. Now, to turn the focus to Ike for a bit. Not that Dallas is going to get too much of it but you never know about the power.
Time to get those prayers started again!
Good news is that her cathecholimines (urine levels) were still normal which means that the tumor is calcifiying (turning into non-malignant tumors).
But, with the new growth, the doctor just felt that it was time to start attacking things. I'm ok with that!
Here's the info: We'll be admitted to Medical City on the 21st (sunday). Eva will have a port put in on the 22nd in the AM. We will stay at Medical City for four days while she gets chemo. There are four rounds of chemo, each 21 days apart. The doctor is hopeful that once this is all done, it is all done. No more cancer. Here's to hoping!
Anyway, that's the quick update. More to come.
I'm fine and thankful that my friend Whitney was at the appointment with me. Now, to turn the focus to Ike for a bit. Not that Dallas is going to get too much of it but you never know about the power.
Time to get those prayers started again!
Thursday, September 11, 2008
Good Day, Sunshine
Well, just a quick note to tell you that yesterday's fiasco is nothing that a couple of cocktails and a bottle of wine can't cure.
I'm MUCH better today. Last night, my awesome sister-in-law came over and took us all to dinner. By then, I was coming around from the trauma. She made me laugh and relax.
Eva was perfect. She completely bounced back and was in great spirits.
I came home, put the kids to bed, settled down with Project Runway and my dear French friend Mr. Noir. You might know him, Pinot Noir? Anyway, we had a happy time together before I went to bed early.
New day! Time to put it all behind.
I'm MUCH better today. Last night, my awesome sister-in-law came over and took us all to dinner. By then, I was coming around from the trauma. She made me laugh and relax.
Eva was perfect. She completely bounced back and was in great spirits.
I came home, put the kids to bed, settled down with Project Runway and my dear French friend Mr. Noir. You might know him, Pinot Noir? Anyway, we had a happy time together before I went to bed early.
New day! Time to put it all behind.
Wednesday, September 10, 2008
Today
I'm home now. I'm trying to type this but honestly, my fingers hardly have the strength to work.
It was a trying day. First of all, they called yesterday and told me that I needed to be there at 7:30am for a 9am appt. Ok, so I get Jill (THANK YOU!) to come over and help me out and take care of Jack before Delfina gets here.
Eva and I get to the hospital and do our paperwork and head to the waiting room. There, you sit with other parents and play the usual "Whose Kid is Sicker?" game. This time, I did not win. Not even close.
One hour goes by, then two. Are they taking Eva soon, I ask? No, not yet. Three hours. Eva is REALLY getting hungry. But, you know that awesome girl, even though she tried to eat the plastic food in the playroom, she was really quite chipper. Three and hours and 45 min later, they take her.
So, I carry her into the room and hark and behold, who is the anesthesiologist? Senior Moment Lady! Oh, man. So, instead of letting me hold Eva while they put her to sleep like the other ones do, SHE made me hold her down while she screamed on the bed. It was awful.
I went down to the cafe because it was 11:30 and I had not eaten either. Jon called from Bangkok. I was happy to get to talk to him when I did not have screaming kids. Anyway, he did make me feel better about MY day so far because he told me that he was going to have to fly coach on a 13 hour flight and the only dvd he had with him was Hong Kong Phooey. Now, I love Hong Kong Phooey just as much as the next guy but for 13 hours, geesh!
I had finally recovered from the earlier incident and went back upstairs. They called me to tell me that Eva was ready for me.
What I left was an adorable child. What I got was a complete crazy person. Eva had a reaction to the gas that they gave her and because I really don't want to relive those horrible 40 minutes, I'll just say that it was such an awful experience I hope that no parent has to ever deal with it. I had to restrain her for a full 40 minutes while she screamed, clawed at my face and kicked me and anyone nearby. There are no words for it, really.
The good news is that once the gas wears off, she becomes her charming self. We were driving home and Eva was sitting in the back singing to the Imagination Movers (her request). Me? I was shaking and completely spent.
It has been two hours and I think that my adrenaline has calmed down. I'm heading off for some rest.
I'll get the results on Friday. AND Oh, hear me now, this is the LAST we will see of Senior Moment Lady, trust.
It was a trying day. First of all, they called yesterday and told me that I needed to be there at 7:30am for a 9am appt. Ok, so I get Jill (THANK YOU!) to come over and help me out and take care of Jack before Delfina gets here.
Eva and I get to the hospital and do our paperwork and head to the waiting room. There, you sit with other parents and play the usual "Whose Kid is Sicker?" game. This time, I did not win. Not even close.
One hour goes by, then two. Are they taking Eva soon, I ask? No, not yet. Three hours. Eva is REALLY getting hungry. But, you know that awesome girl, even though she tried to eat the plastic food in the playroom, she was really quite chipper. Three and hours and 45 min later, they take her.
So, I carry her into the room and hark and behold, who is the anesthesiologist? Senior Moment Lady! Oh, man. So, instead of letting me hold Eva while they put her to sleep like the other ones do, SHE made me hold her down while she screamed on the bed. It was awful.
I went down to the cafe because it was 11:30 and I had not eaten either. Jon called from Bangkok. I was happy to get to talk to him when I did not have screaming kids. Anyway, he did make me feel better about MY day so far because he told me that he was going to have to fly coach on a 13 hour flight and the only dvd he had with him was Hong Kong Phooey. Now, I love Hong Kong Phooey just as much as the next guy but for 13 hours, geesh!
I had finally recovered from the earlier incident and went back upstairs. They called me to tell me that Eva was ready for me.
What I left was an adorable child. What I got was a complete crazy person. Eva had a reaction to the gas that they gave her and because I really don't want to relive those horrible 40 minutes, I'll just say that it was such an awful experience I hope that no parent has to ever deal with it. I had to restrain her for a full 40 minutes while she screamed, clawed at my face and kicked me and anyone nearby. There are no words for it, really.
The good news is that once the gas wears off, she becomes her charming self. We were driving home and Eva was sitting in the back singing to the Imagination Movers (her request). Me? I was shaking and completely spent.
It has been two hours and I think that my adrenaline has calmed down. I'm heading off for some rest.
I'll get the results on Friday. AND Oh, hear me now, this is the LAST we will see of Senior Moment Lady, trust.
Tuesday, September 09, 2008
Confession Tuesday
Here I sit, Tuesday night. Day 5 of a Jon-Free Zone. Where is Jon, you ask? Well, since Friday he's been to Hong Kong, Hanoi, Phnom Penh and Ho Chi Minh City. Tomorrow, he's off to Bangkok and then in London by Thursday. What a trip! I know he's exhausted.
*******
Speaking of exhausted, I'm on Day 5 of a Jon-Free Zone.
*******
Truth be told, I would really like to hear about what Jon is seeing but I'm honestly more interested in what he's eating. Our email exchanges go like this. Jon: "Today I saw____" Me: "yeah, yeah, yeah. What did you have for dinner? And before that, lunch? Oh and breakfast, don't forget about breakfast, tell me everything!"
*******
The kids have been fine. It is so sad that I was so panicked at the thought of 10 days alone with my own children. How awful a parent am I? I have all these friends with husbands in the military and they have their kids with NO support for months and months on end. How do they do it? I'm such a baby.
*******
Speaking of being a baby, I was going to write my confessions last night but Jack refused to go to bed unless I was with him. Although, admittedly, I was bummed that I could not get the mounds of work done I had brought home, there is nothing better than crawling into bed with that little guy. What a snuggle bug.
********
That is, of course, until he starts shouting in his sleep, which he does quite regularly. Last night, he just kept shouting the word "carrots!!!" Talk amongst yourselves.
********
Why is it that both my kids talk in their sleep? The other night, I heard this screaming from Eva's room. She was screaming "MINE! MINE!! MINE!!!" Talk amongst yourselves.
*******
My 20th high school reunion is coming up in October. A HUGE portion of my former classmates have suddenly joined Facebook and have reconnected. Everyone has been posting pictures to the site and just talking away. It has been so much fun to see everyone and see where they have landed.
*******
I was not hugely popular in high school. As a matter of fact, I was the opposite of popular in high school. For me, the reunion is the excitement of forging friendships that I should have done 30 years ago. I was pretty quiet back then. I'm much louder now. Maybe it is the old age hearing loss.
********
Back then, I have to say, I was so lucky that even though I did not have many friends IN school, I had many friends OUT of school. Many of those dear friends are still dear friends. Not dear friends that you remember fondly in the past, I mean, friends I speak to on a REGULAR basis. I'm so lucky to have them.
*******
AND FINALLY, I'm off to the hospital with Eva tomorrow for her MRI and CT. I get the results on Friday. People keep asking me about going by myself for the tests and results. For the tests, I know it will be fine. I mean, it is two hours of me by myself in the hospital! For Friday, I know already what the doctors are going to say. I know that they will want to do something and I'll have to say that we'll just wait for Jon to return from his trip next week. Anyway, just keep Nubbin in your prayers.
*******
Speaking of exhausted, I'm on Day 5 of a Jon-Free Zone.
*******
Truth be told, I would really like to hear about what Jon is seeing but I'm honestly more interested in what he's eating. Our email exchanges go like this. Jon: "Today I saw____" Me: "yeah, yeah, yeah. What did you have for dinner? And before that, lunch? Oh and breakfast, don't forget about breakfast, tell me everything!"
*******
The kids have been fine. It is so sad that I was so panicked at the thought of 10 days alone with my own children. How awful a parent am I? I have all these friends with husbands in the military and they have their kids with NO support for months and months on end. How do they do it? I'm such a baby.
*******
Speaking of being a baby, I was going to write my confessions last night but Jack refused to go to bed unless I was with him. Although, admittedly, I was bummed that I could not get the mounds of work done I had brought home, there is nothing better than crawling into bed with that little guy. What a snuggle bug.
********
That is, of course, until he starts shouting in his sleep, which he does quite regularly. Last night, he just kept shouting the word "carrots!!!" Talk amongst yourselves.
********
Why is it that both my kids talk in their sleep? The other night, I heard this screaming from Eva's room. She was screaming "MINE! MINE!! MINE!!!" Talk amongst yourselves.
*******
My 20th high school reunion is coming up in October. A HUGE portion of my former classmates have suddenly joined Facebook and have reconnected. Everyone has been posting pictures to the site and just talking away. It has been so much fun to see everyone and see where they have landed.
*******
I was not hugely popular in high school. As a matter of fact, I was the opposite of popular in high school. For me, the reunion is the excitement of forging friendships that I should have done 30 years ago. I was pretty quiet back then. I'm much louder now. Maybe it is the old age hearing loss.
********
Back then, I have to say, I was so lucky that even though I did not have many friends IN school, I had many friends OUT of school. Many of those dear friends are still dear friends. Not dear friends that you remember fondly in the past, I mean, friends I speak to on a REGULAR basis. I'm so lucky to have them.
*******
AND FINALLY, I'm off to the hospital with Eva tomorrow for her MRI and CT. I get the results on Friday. People keep asking me about going by myself for the tests and results. For the tests, I know it will be fine. I mean, it is two hours of me by myself in the hospital! For Friday, I know already what the doctors are going to say. I know that they will want to do something and I'll have to say that we'll just wait for Jon to return from his trip next week. Anyway, just keep Nubbin in your prayers.
Monday, September 01, 2008
Denial August
I had worked tonight's post in my head yesterday when we were at The Westfest Polka Festival in West, TX. We go every year and I was going to fill tonight's post with funny stories about the kids and how much fun they had doing the chicken dance. This is not that post.
When you look back at the posts for the past several weeks, you might notice that I have not been mentioning Eva's cancer very much. I think it is because subconsciously, I was enjoying what I have called "Denial August."
Jon and I just spent the month having fun as a family, doing our dance parties, naked racing (the kids, not us), celebrating our anniversary, watching the Olympics, etc. Just not focusing on Eva's illness at all.
Well, it is September now. Today, I was checking in one of the kids with NB that I follow, Max, only to find that he suddenly passed away last night. He was seven.
My heart breaks for the family. He's been progressively getting sicker and sicker but his passing was completely unexpected, yesterday.
I guess August is over. Eva gets a CT and MRI on the 10th. I get the results on the 12th. Jon is in SE Asia for that week but when he returns, we will have to decide our next move with Eva's regrowth.
Time to move to the next month.
When you look back at the posts for the past several weeks, you might notice that I have not been mentioning Eva's cancer very much. I think it is because subconsciously, I was enjoying what I have called "Denial August."
Jon and I just spent the month having fun as a family, doing our dance parties, naked racing (the kids, not us), celebrating our anniversary, watching the Olympics, etc. Just not focusing on Eva's illness at all.
Well, it is September now. Today, I was checking in one of the kids with NB that I follow, Max, only to find that he suddenly passed away last night. He was seven.
My heart breaks for the family. He's been progressively getting sicker and sicker but his passing was completely unexpected, yesterday.
I guess August is over. Eva gets a CT and MRI on the 10th. I get the results on the 12th. Jon is in SE Asia for that week but when he returns, we will have to decide our next move with Eva's regrowth.
Time to move to the next month.
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