Tucson and beyond

Today we met with Dr. Sapozink, our Radiation Oncologist. He interacted well with Abby and gave us the details on her Radiation Therapy (RT) which included the never-ending list of side effects. Her RT will likely begin on Monday, June 14 and will last about 6 1/2 weeks. She will receive whole cranial, spinal and focused area (where the tumor was as well as the surrounding area and the new 1 cm nodule that showed up on her MRI last Thursday) radiation. Tomorrow she will sleep through the set up appointment where they create her mask and "body bed" as well as take all the necessary measurements. Dr. Sapozink is also arranging a PET scan for sometime next week. He says the PET scan equipment is more sensitive than the MRI and will allow them to be more accurate with the focal radiation to the tumor locations.

Late tomorrow we will head down to Tucson. On Friday morning she is scheduled to have her catheters placed and over the weekend she will receive doses of Nupogen (this stimulates the stem cells to move into the blood stream). Then on Monday she will have her first collection followed by our return to Phoenix for a 2:00 appointment with our new neurologist. Dr. Shafron's office set us up with a great neurologist, Dr. Kaplan, for a very timely appointment. We are eager to get in to see him to get Abby off the Dilantin (anticonvulsant) since she has been on the Keppra (anticonvulsant) since before we left the hospital. Abby will need to return to Tucson on Wednesday and possibly Friday for 2 more sessions before they have all they need. You can pray for safe travels as we make the Phoenix - Tucson round trips (and lower gas prices too!)

You can also pray for some closure on the issue of the necessity of a second surgery. Dr. Packer in DC did speak with Dr. Shafron yesterday but we haven't spoken with Dr. Shafron about whether or not they came to an understanding. Please pray that the direction will be very clear.

We will be talking with Josiah and Abby tomorrow night and over the weekend about Abby's radiation therapy and the more visible side-effects. You can pray that God will give us the words to say and wisdom to answer their questions.

Finally, you can pray for our relationship with our insurance company to continue to be smooth. Our Phoenix case manager has been incredibly efficient and helpful so far. So, we were a little saddened to hear that Abby's case got "too expensive" and was transferred to a regional case manager in California.

I'll close with a funny story from our hospital stay that I've shared with a few people and they all insist I need to post it so you all can appreciate it. We had brought a CD to the hospital with us which has the music for the Children's Choir Camp that Josiah and Abby are to be involved with this month at our church. The musical is called Holy Moses. Well, you know about the seizure Abby had in the hospital a few days after surgery. It was a mild seizure, but she was unable to communicate for quite a while afterwards. She was conscious and attempting to talk, but none of us could understand what she was trying to say. Our oncologist happened to be in the room at the time and he was asking her questions trying to measure the extent of the seizure. She mumbled for a few minutes and he smiled and nodded to her. Then, he leaned in closer to her probably to hear her better. She sat up, looked right at him and declared, "Holy Moses!!" as clear as anything. I'm not sure what he was thinking at that point, but he stopped asking her questions :)

Well, that's all to report for now. Thank you for your continued prayers and encouragement. We know our path ahead will be challenging, but we also know that God will be with us throughout and that there will be many people lifting us up in prayer.

God Bless you all!

03:20 AM, 03 Jun 2004 by Amy Oldham Permalink | Attach Photo

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