Tuesday, September 23, 2008
Another Update
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
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!
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
Jack plays the field! (Thanks, Nicole for the pic!)Friday, September 12, 2008
Camp Chemo
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
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
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
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Speaking of exhausted, I'm on Day 5 of a Jon-Free Zone.
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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!"
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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.
Monday, August 25, 2008
First Day of School
Wednesday, August 20, 2008
I Like to Call Them "Quirks"
The job is to talk about only six of them so I'll have to limit myself.
Here you go:
1) I don't eat mushrooms because I saw a Mr. Rogers episode where he went to a mushroom cave. All the mushrooms were growing directly out of manure and that freaked me out at 6. I have never gotten over it. I'm sure they taste fine. To me, they taste like doo doo.
2) I have a very OCD quality about making sure that things are spaced appropriately. This will apply to my wall hangings, things on my desk, etc. I am a human measuring tape.
3) I have a melt down when I'm sitting at a table and everyone places their silverware in the wrong place. The fork goes on the left. The spoon and knife go on the right. What is wrong with you people??!! While on the subject of forks, I can't handle it when I'm given a fork at a restaurant that has the tongs bent out of place. I have to adjust it until they are correct.
4) I can split my tongue in half. My mother used to say, "white man speak with forked tongue".
5) I sleepwalk and talk in my sleep. I used to do it alot more before I got married but Jon tells some pretty funny stories about my sleep antics. I did used to scare some roomates, though!
6) I can't put eyedrops in my eyes. Totally freaks me out. I mean, FREAKS me out. Bad. Ooooh, get the heebee jeebees just thinking about. Man, have to stop talking...
Since you then have to tag six people, I'll tag Jana, Amy, Nancy, Vicki, Daddy, and Cher. Here are the rules:
1. Link the person who tagged you.
2. Mention the rules on your blog.
3. Tell about 6 unspectacular quirks of yours.
4. Tag 6 following bloggers by linking them.
5. Leave a comment on each of the tagged blogger’s blogs letting them know they’ve been tagged.
Tuesday, August 19, 2008
Confession Tuesday
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On my status on my phacebook, I wrote the other day that I am suphering phrom OSD (Olympic Sleep Deprivation). That's really true. I can't turn it oph! My phriend, Theron, wrote that it was as iph someone had been able to "televise crack". That's the truth. I'm all Olympics, all the time.
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Phor that matter, I'm going to break my usual rule oph hating when people change the letters oph things and let me just say, I'm a Phelps Phan!
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Ok, I'll stop. But let me just say, that when I recently stated that all life events can relate to the musical Hairspray, the song, "Good Morning, Baltimore" never had more meaning!
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AWESOME OLYMPIC MOMENT! Back in April, I wrote about our time at Jazzfest and how Cheryl, Hannah and I went to Fest by ourselves and assumed our alter twenty-something (well, at least early 30-something) egos, Shug, Coco and Doz. Anyway, the reason we did that is because we had met these cute boys who I immediately identified as swimmers. We hung out with the cute boys and just danced and partied all day. The next day, we ran into them again, with our husbands, they were like, SHUG! COCO! DOZ! Jon just shook his head, as usual. Anyway, Hannah/Coco called me on Friday night to tell me that one our cute boys won the gold medal in the 50m Freestyle! Way to go Caesar!
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As I said in yesterday's post, Jon and I celebrated our seven-year anniversary last night. For our anniversary gift, we had given each other a great vacation to Napa Valley in July.
Over the weekend, all Doziers gathered for my brother Nathaniel's (we call him Nippy) wedding. On Saturday night, my parents took my kids so Jon and I could have some alone time. So, last night, when it came time to do the actual celebrating (going out to dinner, etc), Jon and I just were spent from the weekend. So, we cooked a delicious dinner at home with our kids. It was really nice to do that, I must say.
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To make the day better, we have had rain for the past 48 hours (a very unusual occurrence in Dallas in August). Anyway, just after Jon and I finished our dinner and most a bottle of wine we bought in Napa, Jack came and asked if he could go play in the rain. I said yes. So, Jack, and then of course Eva, stripped down to their naked selves and ran out the door. Jon and I went chasing after them (fully clothed, mind you) and the four of us splashed around in the puddles laughing away until we could not do it anymore.
It was the best possible way we could have celebrated our big day.
Monday, August 18, 2008
Seven Years Ago, Tonight
I was immediately thrown back to another rainy night that took place seven years ago, tonight.
Jon and I got married.
Seven years ago, tonight, I arrived at my wedding wearing shorts and teva's because there were so many puddles that I did not want to get my dress and shoes wet.
Seven years ago, tonight, we had to delay our wedding because all the streets were flooded and none of our guests, including our officiant, could get there.
Seven years ago, tonight, Jon and I stood in a hallway instead of a beautiful rose garden and said our vows in front of all our friends and family who could finally arrive.
Seven years ago, tonight, our friend threw down a phone book for Jon to stand on to kiss me because he was shorter than I.
Seven years ago, tonight, our 95-year old officiant forgot our last name and pronounced us as Mr. and Mrs. Kristi.
Seven years ago, tonight, our wedding cake went crashing to the ground as it was being presented to our friends and family.
Seven years ago, tonight, my brother almost dropped me while I was sitting in my chair during the hora.
Seven years ago, tonight, Jon and I had the best wedding we could possibly imagine.
I would have not changed one minute of that day nor one minute of our seven years together.
Happy Anniversary, my love.
Tuesday, August 12, 2008
Confession Tuesday
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I've been saving that for a while. If you have not guessed, I LOVE the Olympics. I've so enjoyed watching them this past couple of days. I have so many hours recorded, it has almost filled my DVR. Since I'm not sleeping, anyway, I love the fact that the games are on all night long! Love it!
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What do I love most about the summer games? Water polo. Now, that's a sport! I first fell in love with water polo when I lived in Atlanta in the 90's. Atlanta was gearing up for the big games and they were able to host the world cup water polo finals in '95. A friend said, hey, let's go, it's, like, $3 and we get to see the new natatorium that they have built. I figured that I would never be able be able to see the Olympics, so this was the next best thing. I was hooked. I watched the entire series over several days. Just kept going back and back. LOVE that water polo!
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When the Olympics finally arrived, I WAS able to see MANY games including the medal round for water polo. It was amazing.
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What sport do I dislike? Beach volleyball. Now, let me just say that I am a volleyball player. I even play beach volleyball. But, honestly, is this really an Olympic sport? They are taking away baseball and keeping beach volleyball?'
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Ok, I admit it, every time the US wins a gold medal and they play the National anthem, I tear up. I have to hide it from Jon because I'm sure he'll make fun of me. No need to risk humiliation.
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Michael Phelps. Rock on with your bad self.
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I've been in a bit of a dry spell with my writing recently. Dry spell on the blog, dry spell in writing to my friends, dry spell at work. Guess it would help to sleep from time to time to get the creative juices flowing. I guess. Maybe soon, all will be well.
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Ok, one final thing, Jack LOVED seeing his sister on the blog. He thought that was the greatest thing. Of course, he BEGGED me to let him dance.
Jack is obsessed right now with robots. We have robot light fixtures, robot sheets, robot pictures in his room, robot toys. Robots everywhere. So, when Jack busted this move out the other day COMPLETELY on his own(!!!) and I nearly cried laughing. Of course, I told him that he needed to do it to appropriate music.
Domo arigato, Mr. Roboto!
Monday, August 11, 2008
Eva's First Day of School
She's going to be going to the Mother's Day Out program at Jack's school a couple of days per week for the morning hours. I had wanted Eva to have a bit more socialization other than her brother, who can be a bit rough on her. For example, I wanted Eva to learn that when you want a toy, you don't walk up to someone, rip it out of their hands and clock them in the head. You know, things like that.
This morning, I told Eva that we would be going to school (to Jack's old class, Ms. Carmen). Wearing her new dress, she ran over to get her new Dora bag (both courtesy of her Grandma Phyllis) and proceeded to follow me around the house rolling her bag until I was ready to go.
I thought that when I dropped her off this morning, I would be in the parking lot sobbing my head off. I mean, it's my baby girl and EVA no less going off into the world at 22 months. But, I seemed to do just fine. Jack had to go to camp so he went with me to show Eva around her new classroom.
Almost all kids in Texas go back to school on the 25th, and that will include Jack.
I'm sure on that day when I drop both of my children off at school for the first time, I'll be hiding behind a tree in the parking lot, peering into their classroom windows and sobbing my little head off.
Sunday, August 10, 2008
Quiere Bailar?
China-Pa-Looza
Friday morning, I could not contain my excitement one more minute. I told Jon that we were going to have China-Pa-Looza! I would order chinese food, put the kids in their chinese outfits that we have, we'd all sit on the floor and watch the opening ceremonies. I had this dream that we would have the globe in the center and as the parade of athletes went along, we'd all learn geography.
Well, as you can imagine, things did not go according to plan. It started off well enough! But, of course, Jack kept walking on our "table" and HATED the chinese food (what? no chicken nuggets???), Eva wanted to dance the whole time and would throw her food at the beat of the music, and Jack had NO interest in learning ANYTHING about any of the countries.
The highlight did have to be Eva beating her chair almost at the same time as those amazing drummers!
But, overall, how AMAZING was that opening ceremony???
Alas, I think we'll go back to the China-Pa-Looza that we are comfortable with, Hong Kong Phooey.
Dance Party!
As I have often written about, we like to do dance party at our house most nights after dinner. Well, tonight's dance party was a very improptu dance-off between Jack and Eva in the middle of dinner. Jon suddenly broke into the song Car Wash and the kids just thought that was hilarious. I found the song on You Tube and well...
Jack was running around the house when I shot this but thought you all would enjoy seeing Eva shake her thang!
And don't ask why Eva is only wearing a diaper, Jack and she snuck off for about 30 seconds while I was cooking dinner and ran through the house doing "naked racing". I finally got them to agree to put on underwear and a diaper for dinner.
Oh, and sorry for my brief singing. I realized the sound was on so I stopped for you!
Monday, August 04, 2008
I Fought the Law and I Won!
As I turned left, I was thinking, oh man, another "sticker compliance" sting by the Dallas police. As all my stickers were up to date, I tried to veer around the LONG line of cars.
Officer Friendly signaled for me to get in the LONG line of cars and wait my turn. Ok, I was not speeding, I have insurance, my tags are up to date, this is a minor inconvenience but whatever, they'll let me go.
APPARENTLY, you were no longer allowed to turn left at the light where I turned and APPARENTLY there was a sign telling me I could not turn left. APPARENTLY, this sign was SO clear that seven cars ahead of me did not see it and the seven cars behind me in the line did not see it. AND that was just one light cycle!
Well, let me tell you, friends, I was not going to let that ticket stand. I applied to have my day in court to fight it. So, back in December, they sent me a court date of August 4.
Although I felt ok after leaving the doctor's office today, I have to say that generally speaking, for the past five months or so, I've had a don't-eff-with-me sorta scrappiness going on. Don't eff with me Officer Friendly, I'm ready to take you on. My kid has cancer and I'm not messing around, anymore!
So, no kidding, I park my car and as I was walking into the court house the only thing I kept thinking of was that Public Enemy song, Fight the Power. It was just ringing in my head.
I sit down in court, they check me in and dismiss us all for an hour. I went to the hallway to review some work I had brought. A few minutes later, a jubilant fellow ticket protester came out saying that they were dismissing all the cases, Officer Friendly had taken vacation and was not in court to serve as a witness. Case dismissed!
While ecstatic at the result, I am sort of sad that I did not get my scrappy self in front of the judge. I was ready, I tell ya. Fight the Power!
Appointment Update
As you know, we met with Dr. Zage at MD Anderson last Thursday. He was just terrific and really gave us some direction. We felt so good leaving there and if we lived in Houston, that would be our first choice of care for sure.
Armed with new information and ready for a discussion this morning with our doctors, we left for the appointment.
Dr. Goldman said that Dr. Zage had called him after we left on Thursday, which we really appreciated.
There was much discussion, chemo vs surgery vs careful watching. None seem like such a great option, to be honest. The problem with the chemo is that it may cause damage her heart, among other things. It could also change the tumor type to where it will not spontaneously go away on its own as some nb tumors do. Surgery is risky for many reasons generally, but to up the ante on this surgery, the tumor is located on the side of the heart. Careful watching could be fine except for, again, the location of the tumor which is, as Dr. Goldman showed me on today's xray hugging the spine. Which also means that there is a shot that it might not be able to be removed ANYWAY!
Oh, and her catecholamines were normal today. But, as Dr. Goldman showed me, the were rising each month within normal ranges. We are right at the edge of normal so next time, we'll probably be high. What does that mean? Well, it just means we have a bit of time to make the right decision for Eva, but not too much time.
Bottom line:
We are scheduling a CT for three weeks from now. At that time, we will take a look at our options.
In the meantime, Dr. Goldman is sending Eva's file to Dr. Brian Kushner at Sloan-Kettering just to get his opinion. Dr. Kushner is THE MAN when it comes to neuroblastoma. Of the 600 kids diagnosed with nb a year, his clinic sees 300 of them.
Also, he is meeting with the radiologist and the surgeons to discuss our next move.
Obviously, as I have mentioned, the hardest part is the fact that there does not seem to be a clear cut position. But, I am comforted by both Dr. Zage and Dr. Goldman who have made me feel better about Eva's outlook.
One thing that my mother pointed out. She said that from speaking with me, she feels very comforted by the fact that at every level, each doctor we seem to be coming in contact with, has put Eva first and foremost. There does not seem to be any ego overwhelming the situation. I believe that she is absolutely right. We are truly lucky in that regard.
Jon and I are ok. We're both worried for Eva but feel ok about the direction of her treatment. I think that in some ways, I am have a bit of advantage over Jon when dealing with this situation. When I was dealing with my own leukemia, you learn that things change every minute with cancer. Every plan is not written in pencil, it seems to be written in sand and just before high tide. I think that has been hard for Jon but, God bless him, he's doing very well.
And the beat goes on.
Saturday, August 02, 2008
Well, That Was Weird!
Turns out that after some research done by my trusty pal, Laura, the sitemeter was crashing everyone's blogs!
So, I removed it this morning and it works fine.
Scary feeling when you think you've lost all your work for the past several years!
Whew!
Friday, August 01, 2008
Bad Haiku Friday Festival!
Each Friday, my friend, Laura, over at Catholic Teacher Musings writes her Bad Haiku Friday poems. This week, she has called for a Bad Haiku Friday festival! Although I read hers with envy, I have no talent for it.Thursday, July 31, 2008
A Recipe for Success!
Here you go!
Goodnight Mom's Black Bean Soup
1 tbsp of vegetable oil
1 cup chopped carrots
1 cup chopped celery
1/2 cup chopped onion
2 cans of RO-TEL Chunky Diced tomatoes and Green Chilies (I like the original flavor but it does have a bit of a kick. Choose the mild if you think you might have an aversion)
3 cans of black beans, undrained
1 can (11oz) of Mexi-corn
1/4 cup of fresh chopped cilantro
Add dash of oil over medium heat; add carrots, celery and onion. Cook for about 15 min or until tender. Add remaining ingredients EXCEPT for cilantro. Heat to boil and then reduce heat and simmer for at least 20 minutes. Blend in cilantro just before serving.
To mix it up a bit more:
Add crushed tortilla chips and a dollop of sour cream to the top when serving.
That's it!
