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"...


karen said...

Kristi and Jon, You must be so exhausted. We are and will keep on praying. If we could take some of this burden for you.....
We love you all. Miss you.

Laura said...

I love hearing that she is chatty and trying to climb. I am sorry that it's the neuro-one, but I am gladdened that it is "favorable.
Your blogger friends are with you.

Kimberly said...

Kristi, you and your family are still in my prayers (especially Eva!) I am sorry to hear about the neuroblastoma, but favorable is good. Hopefully the marker will not be present, I will keep that in my prayers as well. Good luck to everyone, hopefully the chest tube will be out soon and you can go home.

Aaron said...

You are constantly in our thoughts.

Mary said...

Thanks for the medical updates. You and Jon have gone through so much; I'm sure you'll be glad when Eva can come home. That's great that she continues to be chipper. Just want you to know that I'm thinking of you and continually praying...

strawberryfields4ever said...

What a long week it has been for you all. We are still holding you up in our prayers. I am glad to hear that she is perky and cheerful. It is amazing how strong she is! I will pray for peace for both you and Jon, and continue to pray for Eva's complete healing. Much love to you all.

Anonymous said...

Sorry to hear about the onc.'s report but happy to know there is a light at the end of the long tunnel. We talk, think, pray about you every day at SJES. Again, good juju sent via the Saunders family and all those at school.

Anonymous said...

Hi guys!
We are always glad to get the daily update especally with encouraging news. It spreads like wild fire through our maze of cubes. Please know that we are aall here for you shoud you need aanything.
Jen O.

Jean said...

Just heard about your news from Laura. Our dear friends are walking through almost the exact same thing with their daughter. I will be praying for you.

Anonymous said...

Kristi and Jon,

So glad to hear Eva is recovering from the surgery and is getting back to her normal happy self! We will keep praying that the best possible results come back from the tests and know that we are all here for you.

Love from all the Peters!

Lori said...

I am totally praying for you and your family.
In blogging friendship,

polkadotwitch said...

still thinking of you and hoping that your little eva goes home soon!

Susan said...

Glad to hear lil' Eva is recovering well and is chatty :) Thinking of all of you and I just know that little Eva has her momma's fighting spirit! :)

Anonymous said...

Kristi, Jonathan
I can't believe how this little cheerfull sweetheart I met a couple of months ago had such a huge tumor sitting in her body. Hope to here more positive news.
Thinking about you all daily, thx 4 the update.

Melis said...

Hi Tired Mom... me, too. I saw your post and am so sorry to hear about your Eva being diagnosed with NB. My Max is recurred NB and we live each day "to the Max!" He's doing great, by the way, and we have been in this battle for 3 years since his original diagnosis. Always stay positive - for yourself and your children. You have a new family plan now and if you embrace it, your lives will be full and happy.

Anonymous said...


I have followed your blogging since your time at North Dallas Kids. You are a good writer and I enjoy your posts.

First and most importantly, thank God your child is ok and that she has come through this ordeal. Blessings to her, you and your family.

I have waited to write as I know you must have been frightened and exhausted. But I must tell you that I found the ending comment of this post to be highly offensive. "Good thing I speak Jew" is as close to anti-Semiticism as can be. In fact, if you Google the phrase, you will see it at the top of a page about anti-Semiticism.

I would imagine that many of the team that saved your daughter are Jewish, as am I. We don't "speak Jew", we speak English and Hebrew.

I ask you to remove this comment from your otherwise engaging and enjoyable blog.

I will end by once again thanking God for the continued health of your family and especially your little girl.

Dave R. Goldberg

Goodnight, Mom said...

Hi Dave,

I'm sorry I don't have your email to send you a personal note so I sure hope you read this.

You are right, the ENTIRE team of doctors were Jewish as is my husband.

I can certainly see that if you did not know me, personally, or know how supportive of my husband's religion that I am, how my comment could be taken.

I'm so sorry that I may have offended you but meant no disrespect to the jewish faith.

I do appreciate your reading the blog.