Update on Ashley -07/30/2010

Dear Friends

Ashley’s biopsy has been put off until Monday. Further review of her PET scan suggest that her ribs are not as ‘hot’ as first thought, thus, not the best location to sample to ‘try’ to understand the source of her pain, etc. Plans now are to biopsy either the shoulder, or thigh, or possibly one of her vertebras. This is tentatively scheduled for Monday.

Pain management is well under control at this time, with Ashley resting comfortable.

Update on Ashley - 7/28/2010

Dear Friends

The PET scan revealed that Ashley’s bone marrow is inflamed. Not just in several locations, but basically her entire bone marrow. This is not typical of cancer, which would show certain spots as being ‘hot’. Doctors remain puzzled about cause. Her cancer doctor has mention several ‘possible’ conditions, but at this time are merely speculative.

He does ‘feel’ that, based upon the bone marrow biopsy, and extent of the ‘hot spots’ revealed by the PET scan, again, that this is not cancer. Plans had been to do another bone marrow biopsy if scan had revealed a particular hot spot. With the extent of the inflammation, he is proposing to do surgery on Thursday/Friday to take a small section of rib. This would provide them with a much larger and broader sample to analyze, which would include bone marrow, bone itself, and the surrounding tissue. Before proceeding, wants to consult today with doctors who specialize in bone marrow disorders/diseases.

In order to do the scan, they had to withhold some of the pain meds, and since they were unable to do the scan on Monday, Ashley’s pain management went out of control. The last two days have been hard on her, with regard to her pain, with many of her muscles being exceedingly ‘tight’, and difficult/painful to move.

One positive note - the scan did show that the cancer trial drug from Boston did have a positive impact on her clear cell sarcoma tumor, with the scan now showing it being ‘less hot’. Unfortunately, at this point, future treatment with this drug is out of the question, until there is firm understanding of the cause(s) of her current condition(s). No other patient taking this drug has shown any of Ashley’s symptoms, other that ‘some’ moderate joint stiffness.

The only connection to the trial drug as being the cause is timeline. She was feeling fine before starting the drug, now she is not, with no other possible causes being seen. As her cancer doctor said last night, we may never truly know what caused these symptoms - it may be the drug, or it possibly, something else that slid in under the radar.

Ashley has agreed to have a small section of rib removed for biopsy. While discouraged, she remains positive, and in good spirits. Please continue to pray for the Lord to guide the doctors in treating her for the pain, and fluid retention, which is basically under control, but only by meds. And of course, for determining the underlying cause, and how to treat.

Lenwood and Kathy

Psalms 40:1-2 - I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings.

Quick Update

Ashley did not have her PET scan as scheduled on Monday. She was accidentally given the wrong medicine that would interfere with the scan. So, the scan was set for Tuesday. I have not spoken with Ashley today or anyone in her family, yet, to know if she had it today or not. So, I'm not sure if it happened or not. I should have updated you all, yesterday. Sorry for that! Please keep praying! Thank you!

My Visit with Ashley on 7- 24

Hey, everyone!
Today, I got to go to UVA to see Ashley. Last time I saw her it was a busy day for her. She was out for tests and was 'out of it'- due to medicine. Well, today was a good day! She was in good spirits! She wasn't in that much pain! We were able to carry on good conversation and laugh. We also ate! YUMMY!! :-)
They still do not have any definite answers, yet. Their main plan continues to be pain control. They do plan on doing a PET scan on Monday (7-26). So, please keep that on your mind and hearts and in your prayers for Monday. They still do not know when she'll be released to come home, as of now. We are hoping and praying soon.
Thanks again for the continual support you are showing Ashley. Thanks for reading, but mostly, thanks for praying. God hears the prayers of His people.

An email update about Ashley from her Dad

Dear Friends,

Ashley remains in UVA, with doctors still unable to determine the cause of her pain, along with significant fluid retention. They finally ‘seem’ to have found the right combination of pain medication to allow her to rest somewhat. Pain management has been a major issue this past week. Scans have shown that her muscles, tendons, and bone marrow are inflamed to varying degrees, however, all of the tests, which have been extensive, including a bone marrow biopsy, have failed to show what the underlying cause may be. Thus, all the treatments have been to manage symptoms, and not for treatment to resolve. One positive note, tests have not indicated her cancer, or any other type, as being the culprit.

Plans are to do a PET scan, possibly followed by another bone marrow biopsy, if scan should reveal any particular places of interest. No indication of any viral disease, such as mono, or hepatitis. Doctors at this point feel that the trial cancer medication she was taking is the cause, however, but cannot find what it may have triggered, thus no clue on how to treat.

Thank you for all your prayers. Ashley remains upbeat, and positive. A cousin and Ashley’s sister have started a prayer blog for her @ http://prayingforashley.blogspot.com/

Again, thank you for all your prayers.

Lenwood

Psalms 34:2-4 - My soul shall make her boast in the LORD: the humble shall hear thereof, and be glad. O magnify the LORD with me, and let us exalt his name together. I sought the LORD, and he heard me, and delivered me from all my fears.

You're Being a Blessing!

First of all, Thank you so much for those already who have started 'following' and beginning to pray for Ashley. I know that many of you do not know Ashley personally. You know someone related to her. It really is a blessing, more than you know. I appreciate it, and I know she does, too. So, thank you! You are a blessing! So like the old hymn says, "Make me a blessing to someone today." Well, you've done that! Praise the Lord! But, please continue by spreading the word.
There really isn't any 'news.' She is in a lot of pain. That is all I know. So, I'm asking you to please pray for relief. We should find out results soon of the tests she had late last week. We are hoping for the results today or tomorrow. So, please pray for Ashley today, as she may get those. Pray for good results! But, we also need to pray, for the Lord's will! This is hard to pray, but we have to pray as He wills and what brings Him the most honor and glory.
We will share the news when we can. But, please understand that it may take a few days, depending on when we get the results and what the results are.
Again, thank you so much for the prayers! Please continue! Please pray for Ashley's health and for her encouragement. She may have to be in the hospital for a couple of weeks (I was told last night). Please pray for her family. Please pray for wisdom for her doctors.
Thanks again so much for your love and support and prayers! Please tell others about this blog. Ask them to read and 'follow.' Let us try to be a blessing and encouragement to Ashley, please. That is my desire for my sweet cousin at this time!

Latest Update on Ashley

Now, I know I just started this blog and basically gave you a 'run through' on what is going on with Ashley. Now, let me give you an update. Ashely was accepted and went to Boston, MA for about two months for a trial drug. However, it had to stop for her because she was experiencing some pain not just in her joints (some of the others were facing that, too!) but also in her muscles. They didn't know why that was happening. They speculated that maybe the trial drug was 'eating' her red blood cells. As you could imagine, that would be painful! So, that medicine ended for Ashley.
This week she began having a lot of pain again and swelling. She was admitted to University of Virginia (UVA) hospital. She has been there since Wednesday. They have done testing. They did a bone scan and found some 'hot spots' on that. I guess, as best as my mind can understand, they saw some things that concerned them. So, they did a bone marrow biopsy on Friday, July 16, 2010. I actually went up to see Ashley on Friday(and brought her Chick- Fil-A- she loves it and doesn't have one close to her!), not knowing all of that was happening. I was excited to be able to see her. She was a little nervous about that, but they were able to give her some meds to calm her down a bit. After she was through with the biopsy, she said it wasn't as bad as she thought it would be. So, that was a blessing!
She also had an ultra sound done on Friday, too. So, Friday was a busy day for her! I haven't really talked to her today except through text and she said, "..."I'm doing much better today." We won't hear anything back from her tests that she had on Friday probably until Tuesday or after. Please keep Ashley in your prayers. Please pray for her physical and emotional strength. Pray for her family and friends. Pray also for the wisdom for her doctors as they take care of her. Of course, we know that God is the Great Physician. We rejoice in that fact! He is the One Who holds Ashley in His hands!

Background from Ashley's Words (sort of!)

I asked Ashely if I could start this blog for her. Of course, she gave me permission. If she didn't, you wouldn't be reading this! Well, I told her I would use her info. she had on Facebook at first to bring us all up to date, in a way. So, this is from Ashley's FB (somewhat edited!).
She wrote: I spit on cancer. I thought I should update this. Most of you know I have cancer since 2005. I have clear cell sarcoma; that is a soft tissue cancer located in my sacrum. I beat it the first time with chemo and was cancer free until 2009. I did chemo again, but it didn't work as well but my cancer didn't grow. March 2010, my MRI looked worse. So now I'm preparing to see if I will qualify for a clinical trial. In a weird way, I'm excited to be a part of this and to see the outcome. The first time I did chemo I was confident it would work, and I have the same feeling with this clinical drug. I hear that somebody is saying they think I have given up cause I keep to myself. HELLO!!! I have always kept to myself. Even in high school I didn't hang out with my friends but at school. I've never been into partying functions or so on. I'm the same as I was before cancer. I enjoy being a home body. I HAVE NOT GIVEN UP AND AM VERY POSITIVE. I wish others could do the same. God has a plan and I accept it.
That is from Ashley!