Improvement

The only new tidbit I have to offer you is that the medication is definitely helping. I think I'm getting my first real taste of "pain management."

Alysia Pretty Much Covered It

If you read Alysia's last entry for me, then you've pretty much got the update. I definitely want to reiterate that I definitely feel more comfortable working with the University of Chicago (UCH) after Tuesday's appointment.

Dr. Stenson (She one of the surgeons on my team at UCH) explained that I've been the topic of discussion at almost every meeting and that they've really been discussing and working on the best plan/course of action for me. Dr. Haraf (the radiation oncologist on my team) says he will not put me through another round of radiation unless we can prove with certainty that the "hot spots" on my PET Scan is new cancer growth. The only two options for proof are (1) biopsying (they are looking for a safe/effective way to resect a good amount of tissue from different areas and are not certain whether they need to go through my ear or my temporal lobe (the area of your brain just behind your ear). (2) They can monitor the growth using frequent MRIs and other scans. This would mean scanning every two months and monitoring changes. I'm already close to the two-month point, so that is the reason they've scheduled another apopintment in late March.

Right now they've completely changed my medication and Dr. Stenson is hoping that the news meds give me some relief. One of the major changes is that I am now on a pain killer that is designed to alleviate pain in nerve endings. I am only taking one a day right now, but I will gradually move up to taking the full dose of 3 a day. They are very hopeful that this medication will relieve some of the discomfort in my face. I already think it is working a little with only 1 a day; however, it is making me very tired.

Please continue to pray for the doctors (and me) as we make important decisions about the next course of action. My spirits are definitely a little better after Tuesday's visit and after reading all your comments to the last few blogs. I really appreciate those of you who continue to check in and comment (thanks especially to you Kimberly T. It means a lot that you checked and are praying).

I'll try to keep everyone posted or have Alysia post when I can't.

Some Answers at Last. . .

Ashli had another trip to Chicago yesterday, (Yes, she and Lori were crazy enough to brave the toll-road in this weather!) but still doesn't have access to a computer, so she asked me to log in once again. . .it seems like we are getting some answers at last.

First, I should mention that Ashli is feeling MUCH better about University of Chicago after yesterday's appointment. With their recent unorganization, it raised some concerns for everyone as to if this was really a place we wanted her/she wanted to be. . .it seems the appointment yesterday eased most of those worries.

Let me start out by saying, one thing I did not realize is that one of the biggest reasons the doctors are having such a hard time figuring out what this "growth" is, is b/c they are not familiar with the side effects of the Proton Radiation treatment Ashli had in Loma Linda. There are only a few sites in the US who even offer proton radiation, so part of the reason for the difficulty sounds like it is b/c of not knowing what side effects come from the treatment afterwards. It sounds like the doctors in Chicago are trying to work with Loma Linda to figure things out, but they are not having much luck, which leaves them to try to figure it out on their own. At this point, they still feel strongly they will need to do a biopsy of some sort. The reason behind this, is that the chemo and re-radiation treatment would have negative effects on Ashli's body and they don't want to put her body through the harsh treatment unnecessarily. Ashli is due for another scan towards the end of March. The doctors gave Ashli some new pain medication and nausea meds to try to hold her over until they can evaluate the next set of scans for any "change" and then proceed with deciding the right type of biopsy (nose--more invasive vs. temporal lobe--less invasive).

It sounds like they are headed in the right direction. It also sounds promising that they would allow Goshen to administer chemo in Goshen. If they decide upon re-radiation, that will be much touchier and Dr Haraf (I presume the radiologist in Chicago) will make the determination if he is comfortable with Goshen administering, but sounded less promising for the re-radiation.

So that is where we are at. Ashli's next appointment will be in late March. Continue to keep her in your prayers that her spirits will be lifted in the coming weeks to prepare her for what is ahead!

Thanks for your support and prayers!

--Alysia

Updating for Ash

Hi Everyone, It's Alysia again, just popping in to give you an update on Ashli b/c she still does not have her laptop in working order yet.

Monday Ashli went to Chicago and met with Dr. Leonetti (Loyola) for a second opinion regarding the growth. Unfortunately, he said that based on her symptoms, he is pretty certain the growth is cancer. He (and the other doctors she has met with) all agree that they do not believe the growith is operable. Lori Cloud (God bless her) is taking Ashli next week to have another appointment with Dr. Vokes (University of Chicago) and a surgeon regarding the possibility of biopsying. One thing I know Ashli & Lori will question is why she should have a biopsy when they told her that regardless of the results, they will suggest chemo and/or radiation treatment. We all think it seems silly to put her through the trauma of a brain biopsy if their treatment plan will be the same regardless. Hopefully we will get some answers to that.

Here are some ways you can pray for her right now:

• Pray for Ashli's spirits. I can tell they are deflating a bit. She needs to have some positive things happen to rejuvenate her and prepare her for what is ahead.
• Pray that the doctor's will agree to allow Goshen administer the treatment so Ashli doesn't have to move again. THIS IS HUGE!!! She does not want to go through a "California" separation all over again when she is feeling horrible & alone. None of us feel all that comfortable about her having to live elsewhere either.
• Pray for Ashli physically. She is mostly sleeping and puking she needs some relief of these symptoms to help her feel well and prepare her body for what is ahead physically.
• Pray for clarity in the appointment and that they will ask the right questions. Pray that there is a logical explanation regarding the biopsy or that they can allow her to skip it and just move forward w/ the treatments.

Also I just wanted to say a big THANK YOU to those of you who have driven her to Chicago for appointments etc. It's a huge relief that she has other people in her life who are able to help out as well! Thank you so much! It has made things much easier for her and for all of us.

One last thing. . .I know at one point, Ash had blogged about the Old Spice contest my husband and I entered and we found out that we ACTUALLY WON!!! So to anyone who voted for us, or took the time to pass the info onto your friends etc we appreciate it so much! We are waiting to hear back from them now re: the itinerary we sent for our vacation this summer! So anyone who voted. . .THANK YOU! And pass the word along to anyone else you had vote for us!

---Alysia

Finally Some Info.

So... we found out in an interesting manner what UCH's plan of attack is. After my meeting with Dr. Yamini on Monday, I was fully expecting to hear back from Dr. Vokes concerning his plan of attack. I didn't hear anything until late on Wednesday night when I received a phone call from Dr. Yamini's nurse. She wanted me to come to Chicago for another appointment on Thursday. When I told her it was simply too late of notice (she called me at close to 5:00 PM on Wednesday) She responded by telling me that it was really essential that I come because they wanted me to book a hotel room and they were planning to do a biopsy of my brain on Friday morning.

I laughed and told her there was no way they were biopsying my brain on Friday morning when Dr. Yamini didn't even think he was the surgeon who should be handling my case on Monday. Perhaps brain biopsies are a daily procedure for them, but not for the patient.

After turning down that appointment, I finally started getting some phone calls from Dr. Vokes people. Dr. Chung, his assistant called to share my PET results with me and explained that they really needed the biopsy because there was no other way to determine if the activity showing up on the PET Scan is scar tissue or cancer. However, Dr. Vokes did agree that even a biopsy would not be definitive and there is probably not a way to conclusively determine whether there is any cancerous cell growing in my head. I still have a number of questions for Dr. Vokes, so I scheduled another consultation with him on the 13th. Lori will be going with me and we will be preparing a list of questions to ask about their recommendations for treatment. I may go ahead and schedule the biopsy and just cancel if we decide not to proceed with it.

Meanwhile, I will be meeting with another surgeon, Dr. Leonetti to get a second opinion about whether or not I am a candidate for surgical resection. From everything we are hearing, surgery is simply not an option for me at this time.

I could really use prayer in a number of areas:

1. My spirit is really deflating. It is hard to keep a positive attitude and stay optimistic through all of this.
2. Wisdom to make the right decision. The biopsy itself is pretty risky due to the amount of radiation I've had on my head. Furthermore, they are recommending a second round of radiation which often has devastating consequences to the body coupled with chemo. Deciding on the right course of treatment is crucial at this stage.
3. My health. I've pretty much been alternating between sleeping and vomiting. I need a reprieve from that vicious cycle. I feel like I'm back in California (except that I don't have the lovely and entertaining Jeremy & Kristin by my side).

I'll try to keep updating as much as possible. Still no progress on the laptop (save for the fact that my man Kevin Edwards is working on it).