Steadman Family

Week four of radiation has begun with a bit of a hitch, mainly in deciding whether to continue radiation treatments or not.  We began to question this treatment plan after the meeting with Dr.Gore (the clinical coordinator) on Friday. The term “Radiation Necrosis”(death of tumor and normal brain cells by radiation) was not an unfamiliar one to us, but it took on new meaning when it was explained that children who have a lot of necrosis following radiation often do not qualify for any clinical trials.  The reason being that these trials are focused on new drugs and their ability to affect (i.e. kill) live tumor cells and stop them from reproducing. Nothing can be done if the cells are already dead or dieing but the body is unable to keep up with clearing these cells away.  This caused us some concern, but after talking with another oncologist, we decided to continue radiation based on where Bens at in his treatment and the likelihood that radiation still offers a better chance at quality of life than not radiating. The clinical trials that Dr. Gore discussed were here in Denver and still very new (only in Phase 1). We have to get through radiation and a 6wk. follow-up MRI before clinical trials of any kind become an option. On a better note, Dr.Foreman gave the OK to reduce the steroids from 12mg to 8mg. This is good news, now we just have to pray that he doesn’t begin to regress due to the lower dose.

Today was defiantly one of his better days, with some decent energy, less irritability, more strength, and slightly better coordination. He also took a much greater interest in his surroundings and with the whole “Make-a-Wish” discussion. Hopefully this will continue since the Wish Grantors are visiting tomorrow to get Ben’s wish. I still don’t have any idea what that might be. We’ll let you know!

In one of my earlier posts, I mentioned a Dr. Banerji from India who had attracted the interest of some major cancer institutes due to his homeopathic remedy and its possible curative effects on gliomas (you can read his paper here). Well, I’ve been corresponding with him via e-mail, and he will be in the US from Oct. 12^th to Nov.4^th and he has indicated that he would be glad to meet with us! The closest city where he will be spending some time is in Kansas City where he will be staying from Oct.20^th-25^th. I sense a road trip in our near future (Ben will be done with radiation by this time).

Again, I want to thank everyone for their love, prayers, and support. Many people have commented to us how strong we appear to be in the face of such a cruel card to be dealt. This absolutely would not be possible without such a wonderful network of people who care. We draw upon this network for our strength and hope.

They say that love heals all wounds; I hope to god they are right!

Melinda

 

Ben and Madie got into the markers last summer and decided to become indians. I’m not exactly sure which tribe had the tradition of  coloring each others butts.

We finished our third week of radiation treatment on Friday and Ben’s still being really good for the nurses. Dad, on the other hand hasn’t been too good for them lately.

We’ve gotten into a fairly good routine for Ben’s therapy - which I’m sure has helped make it much easier on him. We go straight into the kids waiting room and read a book or watch a bit of a movie while we wait. Mr. Bill, the receptionist, usually pops his head in and says hello and offers the kids a treat or toy from his box of goodies. We get the page that they’re ready for Ben and he and I go down the hall to the treatment room. He takes off his shoes, gets on the table and lays down. The technicians put his mask on (a plastic mold of his head to ensure that he’s in the same spot every day) and I cover him up with one of his blankets.

The technicians ask that we wait for Ben in the waiting room. This wasn’t an issue for our first week or so, but Ben has started asking that I be there when his treatment is over. He’s very tired after his treatment and usually wants to be carried out.

I obviously can’t stay in the treatment room and the technicians seem bothered when I hover over their shoulders at the controls. So I stand in the hallway with a twelve inch thick door between Ben and I. Most of the technicians have successfully interpreted the “I don’t follow the rules” look on my face and don’t seem to mind my standing in the hallway for five minutes.

Most of the technicians except for one. And she’s the one who administers most of his treatments. She insists that I return to the waiting room for the entire five minute duration of his treatment. Her only explanation is that only patients are allowed in the area and that I’m technically not a patient. It’s not really that big of a deal, but I’m actually enjoying the conflict. I doubt that it’s as good for her.  

We reached a compromise on Friday where she will page the front desk when Ben’s treatment is over. So now I walk him into the patient only area, help get him onto the table, walk back to the waiting area, sit down and then get up and walk back to get him. I guess I should be thankful for the exercise.