Abby's Journey Archive

This morning we went in at 7:30 to Good Samaritan in Phoenix for the radiation therapy "fitting". They sedated Abby through the procedure. She had to have another "poke"--they inserted an IV just before the procedure, but she did great. We have been so proud of her each time she has needed an IV, she cries each time, but the most important thing is that she holds still.

They needed to sedate her to make sure she was completely still while they made the body mold and mask. These items are created just for her to make sure that during the treatment they irradiate the exact same areas each time. They also gave her little tattoos on her back to help them line her up during the treatments. You really have to look to find them, they are very small and probably over time will fade. Amy and I always told each other we would never let our kids have tattoos. Oh well. :-)

The fitting took about 90 minutes. We promised her that if she did well she could choose a restaurant to eat at afterward (she needed to fast because of the anesthesia), and true to form, she picked McDonald's, because she wanted fries. Our daughter the gourmet!

We were done by lunchtime.

Later in the day we had communications from Dr. Graham (stem cell expert at UMC in Tucson) and Dr. Panchoosingh. Praise God, the approval for the stem cell therapy came through from the insurance company. We actually have a new case manager with Cigna, our case is now in a new cost bracket, so they transferred the management to another person. Please pray that we will have as good a relationship with her (Monette) as we did with the old one (Susan). Susan has offered to be a resource should we need further help.

Thank God that Cigna has been so easy to deal with so far.

One other wrinkle that has appeared is it seems that the decision for a second surgery is now at least somewhat our responsibility. Dr. Panchoosingh and Dr. Shafron want our opinions on what we should do. It's kind of frightening that they are asking us what we want to do.

The new lesion is in the right occipital lobe of her brain. As of the last MRI it is not very large (1 cm in diameter), but it was not on any of the pre-operative, or post-operative MRIs so it seems safe to assume that it has appeared in the last three weeks. Our first take is to try to control it with the radiation therapy, which will start a week from this coming Monday. Our radiation oncologist, Dr. Sapozink, is also ordering a PET scan (Positron Emission Tomography). PET scans show metabolically active cells. Since cancer cells grow quickly, they are metabolically active, and this will give us more information about the nature of the new lesion.

We also have yet to do the spinal tap to test her spinal fluid for malignant cells.

So far she has not been symptomatic, and has maintained her normal, cheerful self.

So please pray that we will know what is the right thing to do regarding surgery. Like I wrote before, God made it so easy for us to get to Washington DC to see Dr. Packer. Had we not gone there, we would have remained under the assumption that there was no more tumor, and Dr. Shafron would not have ordered the last MRI revealing the new lesion.

The radiation therapy will consist of a course whole-brain, whole-spine treatment with focal boosts to the original tumor bed and the new lesion site. Dr. Sapozink is optimistic about the effectiveness of radiation on these types of tumors--maybe the radiation will stop the growth of the new lesion?

We remain optimistic as well. We know God is in control. Some of our prayer and worship times have been so intense, with the Spirit just washing over Amy and me, giving us great peace. These times are punctuated by times of intense fear and sadness. So far the peace outweighs the fear. We keep trying to remember all the verses where God says "do not fear. I AM with you." (Gen 15:1, Ps 112, Jn 4:14, and so many others). He continues to sustain us.

I had a request for an update on Abby's Uncle Roy. Roy was in surgery today to have an implantable defibrillator installed in his chest. He is out now and is doing well. He's been at the Heart Hospital in Tucson for many days now, and has made lots of progress there. We're not sure when he gets to go home yet. We'll write more later.

In case you haven't noticed, if you want to comment on any of the entries here, you can login to the site and click the "comment" link at the end of the appropriate entry. Comments are visible to everyone, including us.

We've also had lots of people ask about emailing us. Our email addresses are not readily visible on the site because spam harvesters troll the 'net looking for "good" email addresses. However, if you login to the site you can get a list of site members from the main page at http://family.ncbt.org/. You can find our email addresses there.

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!