Wednesday, January 6, 2010

No Chemotherapy Recommended

Tuesday, December 29th, 2009 -

Today we traveled to UIHC again to meet with Dr. El-Sheik, the pediatric oncologist to talk about the possibility of chemotherapy. He had pretty much told us what we had researched online about how there was no measurable benefit for chemotherapy at this time. He said that maybe later on down the road he may have some to stave off some of the symptoms that he may be having, but as of right now he didn't recommend it. We will definitely pray about it. We obviously want to make the right decisions and we want Oliver to be as comfortable as possible throughout this ordeal.

We then went to the Radiation Department to get Oliver's radiation mask, pillow and mouthpiece formfitted to him to get it all set and ready to go for his future radiation treatments. We met Dolly, who is the cheif radiation therapist I believe and she was great with Oliver. She explained that we needed to get him a mouthpiece to wear during his treatments. He even got to help construct it. She told him that it was kind of like what football players wear in their mouths. It was a clear plastic shell which she poured some green paste into. He placed it into his mouth for about three minutes which made the impression of his teeth and then it set a few minutes later. He helped to attach some more pieces to it which he wore during his CT scan and subsequent radiation treatments. She did a great job explaining everything to Ollie before it happened. (I wish I had my camera to take pictures of him building it! He did such a great job!)

After a bit, we met with Dr. Buatti again to discuss his radiation therapy. We would begin treatments on Thursday morning at 11 am. The hospital was going to be closed on Friday and Saturday for the holiday (New Year's) but a technician would be there to give Oliver his treatment because they wanted to get him started right away. How nice is that!? So he would have his treatments this week on Thursday (31st) at 11 am, Friday (1st) at 8 am and Saturday (2nd) at 7:30 am. Ed had told him what Dr. El-Sheik had said about chemotherapy and Ed asked Dr. Buatti what he would do if it was his child and he said that he would do radiation with a low dose chemotherapy. So, we will see about that later on.

We then waited in a family waiting area for a while and Ed read to him. Ed nodded off for a few minutes and so Bry took over reading a book about fish to him while I layed on the couch to rest my eyes for awhile. (Bry and Oliver are fishing buddies and I fully expect them to go on some excursions together this summer!)

Oliver went to get his CT scan and got his pillow shaped to his head and then they made the mesh mask. They get it wet and while it is still pliable they mold it to his face so it fits perfectly. He was very nervous for this as I would be if I were a kid, but he did GREAT! It helped that the nurses were all so fantastic with him! He then went to get his MRI done while Bry and I waited for them to get finished in the family room. Oliver has wanted Ed to be with him as much as possible and I've noticed his attachment to him more and more, even at home. He loves his Papa so much, which he should because he's got THE BEST daddy a kid could ask for! When he came back in, the nurse handed me a baggie with some beads in it. They are called "Beads for Bravery" and with different things the kids undergo, they get a corresponding bead to place on a necklace or bracelet. So, today he got a green sphere for the IV (contrast), a small smiling sun for the MRI and a cat for the CT scan. What a neat idea. It's those little things like that that help take a kids mind off of some things... ya know? Very cool. He did GREAT today!!!


Williams Family said...

Thank you for sharing all of this with everyone. We pray for Ollie everyday. We love you and know that you will be lifted and strengthened.

Frisbies Forever said...

Oh, how I pray you will all get to spend as much time together. You are all a fabulous family! Thank You so much for keeping us updated!!!

HeidiAnn said...

I just spent some time reading through this entire blog. Oh Stacy. I have no words except that you and your entire family (extended too) are in my prayers. I hope to see you soon.

olivia said...

Stacy, you do not know me, but a friend named Kori Fisher gave me your info. I have a daughter who is 9 now. She was diagnosed with a tumor on her brainstem in March of 2008 when she was 7. We were living un Utah at the time but have moved to North Carolina where we could bring her to Duke. We faced many of the same things that you are facing now so I understand the things you are going through. The doctors told us that she would not see Christmas of 2008. We were devestated. Our hearts were completely broken beyond repair. But here it is almost 2 years later. We are beating the odds. Only through the grace of God we know. He has truly blessed us even though this has been the hardest thing that we have ever lived through. Andrea, our daughter has a web site that chronicles our journey. If you want to read it you can find it on The name of the page is punkyspage and her name is Andrea Stevens. Ours is a journey of much pain but tremendous faith and fasting and prayer from thousands of people. I would love to talk to you if you need some one to talk to. My home phone is 919-542-5429 and you can e-mail me at I know that you may not be ready to talk to anyone else but I want you to know that I am here and I am your sister in Christ. I would love to help you in any way that I can. Your are in our prayers and we will continue to think of you, Caren Stevens