Monday, April 9, 2012

Update...Read All About It!

So usually "no news is good news," right? So when your son's oncologist calls you before your scheduled appointment and even gives you her personal cell phone number to talk about results, it usually makes you want to throw up, right? Yeah, well, shockingly enough, I didn't need the barf bag and am feeling pretty calm right now.

We look so normal, don't we? This was after church on Easter Sunday yesterday.

Case's scans actually looked really good. The scans showed further shrinkage of everything, and that's great! The problem that needs to be addressed is the location of what's left of the "live tumor." The mass that is still in him is 3 cm x 5 cm, but a portion of it is already dead, calcified tumor...hooray! There is a portion that is still alive, and that portion is causing the ruckus.

Tomorrow morning poor little Casers needs to go in for ANOTHER MRI scan. This one will be a much more detailed look at the pancreas. The tumor is located either in, or right up against, the pancreas. So as everything stands now, if we moved forward with surgery, he would need what is called a Whipple Procedure.

A Whipple Procedure is "also called a pancreatoduodenectomy. The surgery is named for Dr. Allan Oldfather Whipple, who pioneered the procedure. During the complex operation, surgeons remove the upper section of the small intestine, the gallbladder, the head of the pancreas, a section of the bile duct and sometimes the lower section of the stomach. After the organs' removal, the surgeon reconstructs digestive tract. This risky surgery has several serious complications associated with it and a long recovery time." (You can read more here)

It's not a procedure that we want Case to have if it's not necessary, as there are serious, lifelong side effects. So here are the scenarios/questions:

1) Would more chemo shrink the tumor away from the pancreas so that a Whipple is not needed and in time a simple removal of the tumor would be possible?

2) Even if he had more chemo, would he still need a Whipple in the end? If so, let's avoid more chemo and just go straight for the Whipple.

3) Is the size of the active, live tumor small enough that we could just leave it in? I know this sounds crazy, but Neuroblastoma IS crazy. In babies like Case, the tumor cells often mature into benign cells that can be left inside the body for the rest of their lives with no side effects or risk of malignancy.

Bottom line, we are doing more tests tomorrow. The Children's Hospital Oncology group will be reviewing his case, and we will be seeking a second opinion from a group at Texas Children's in Houston (who are very experienced with Neuroblastoma) and from an expert at Cook Children's in Ft. Worth.

I called our initial oncologist, Dr. Pass (the one who retired the week Case was diagnosed). She said that we need a doctor who sees 10 Neuroblastoma patients a day to make this call for us; hence, the second opinion. It was so nice to talk to her! Love that woman!

So, I really don't know what is going to happen. Hopefully the events of the next few days will unfold quickly so that we can all move forward with a well educated decision on how to help our sweet baby. All we need are prayers that the doctors looking at Case's case will be inspired; and also that these other doctors will be willing and able to review Case's case so that we know if surgery should be cancelled or postponed.

I just have to add that I am so thankful for the support of family, friends, and the Lord because I feel so unusually calm. I usually freak out in this kind of situation, but I know everything will be okay. Now we just need to wade through all of the brambles to find the answer!


  1. I also feel at peace as I read this post. We have been and will continue to pray for the specialists to be inspired to know the best course of action for Case

  2. Emily, your faith and trust in the Lord is so inspiring!! We are praying for those exact things and know the Lord is in control! Thank you for the update. We love you all! PS Adorable, beautiful picture!

  3. Emily, we will keep on praying for you, Case, your family and especially the Dr.'s at this time that the best decisions can be made. I'm so thankful that you're able to feel calm right now. You are a true fighter yourself and brave beyond belief.

  4. You will all be in our prayers constantly. You have gone through and overcome so much I know you can do this as well. You are amazing and I know the right decision will be made. All my love!

  5. We are thinking about you guys and praying continually. Love you guys!

  6. Thank you for such a detailed update. I was happy to hear that the scans generally looked good. We will continue to pray that Case's doctors will decide on the best treatment for him and that you will continue to feel peace as you make these difficult decisions.

    Much love,
    Lisa & Matt