Ashley's Song

While reading comments on Ashley’s Facebook page after her passing on Wed, Aug. 18 our family friend Ray Irby was inspired to write a song for her. He began writing the song the day Ashley’s passed and continued to work on it the following day. The song wasn’t completed but Kathy really wanted Ray to finish the song and sing it at Ashley’s memorial service on Friday the 20th of Aug. That morning Ray woke and the words to complete the song had been placed on his heart. Ray is certain God gave him the words to complete the song so he could sing it at Ashley’s service. It is with his permission that we share this song with you.

Dancing with Angels (Ashley’s Song)
by: Raymond Irby

1. The angels were waiting, so anxiously.
Their wings started waving they were waiting to see
A Child they had watched over so tenderly.
Now she was coming home always to be.
When the party’s in Heaven, nothings left to chance.
The music is playing, their ready to dance…..

2. Jesus comes over and gives her a kiss.
She sees her dear loved ones that she has long missed
She sees all of Heaven her heart filled with bliss.
She never imagined it would all be like this.
The music’s still playing, she gives God a glance.
He winks at His child and tells her to dance…..

3. In all of Heaven, the angels can’t wait
for all of God’s children to celebrate.
The journey won’t end at those pearly gates
if you live life for Jesus, it’s never too late.
To go dancing, dancing with angels
Go dancing, dancing with angels

Chorus
She’s dancing with angels, dancing around.
She’s free and she’s happy. She’s no longer bound
to her pain or body, she’s totally free.
She’s dancing with angels through eternity.
Yes she’s dancing. Dancing with angels.
She’s dancing, dancing with angels….

Thank you Ray blessing us with this beautifully written song. May we all find peace and comfort through your words and inspiration.

Ashley's Passing

Dear Friends

Ashley’s battle with cancer ended this morning at 4am. Thank you for all your prayers through this five year battle. Ashley’s motto during this time was “I spit on cancer”. And while it may appear that the cancer won, today she is celebrating her victory with her Lord, in a place she described yesterday as a beautiful place to go to. Today she is no longer spitting on cancer but celebrating life with our Savior.

Again, thank you for all your support and prayers.

Love

Lenwood and Kathy

Psalms 27:1-4 - The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid? When the wicked, even mine enemies and my foes, came upon me to eat up my flesh, they stumbled and fell. Though an host should encamp against me, my heart shall not fear: though war should rise against me, in this will I be confident. One thing have I desired of the LORD, that will I seek after; that I may dwell in the house of the LORD all the days of my life, to behold the beauty of the LORD, and to inquire in his temple.

Specific Requests plus Thoughts

Hi.
I've been able to visit with Ashley the past couple of days. It has been good to see her. Some specific prayer requests that I would like to mention would be to pray for her headache to go away. She has had a headache for several days, which has been pretty bad. Also, her sodium levels are low. They are trying to get the levels up to where they need to be. They are increasing a little each day, which is good, but please keep praying that they continue to get better.
On another topic, thank you for your prayers for Ashley. We do appreciate it! Please continue to bombard the throne of grace on her behalf and the behalf of her family- they need His strength, as well. Please pray for wisdom for Ashley's doctors. Please spread the word about Ashley. Ask all the Christians you know to pray for Ashley, please. We believe in the power of prayer. We know we have a God Who loves us and hears our prayers. Praise Him for that! We also know numbers don't really matter; however, please ask people to 'follow' this blog. It is a way that Ashley and her family can see and 'get to know' those who are praying for her. It is a way to be a blessing to them! If you don't know how to 'follow', leave a comment, and I'll respond and help you. Also, if you have a Facebook page, I've started a Facebook group called Praying for Ashley. Please feel free to become a member on that page as well and leave comments to be a blessing and encouragement to Ashley.
Please let Ashley and her family know that you love them and are praying for them. Leave them a Bible verse or a part of a hymn, perhaps. My desire- to be a blessing. Let's strive to be a blessing to this family-- yes, my family! Thank you!

Update on Ashley - 8/10/10

Dear Friends

Past week has been busy, and Ashley’s comfort has diminished somewhat. Biopsy on her right hip bone last Tuesday, followed by two more MRI’s, another CT scan, X-ray, plus numerous other test, all trying to understand the underlying cause(s). The muscle tightness she was experiencing in her back has moved around to her chest, which is really uncomfortable. They did find a med that helps relieve this, but side affect keeps her real drowsy. In addition, trying a new pain med, to replace one she is currently taking, again, major side effect is drowsiness, plus nausea.

Results from the hip biopsy – pathologist says that her cancer is now in her bones. Her cancer doctor said that he was not expecting this. Did mention one treatment option that has a major side effect of significant tiredness. This was late last night, and did not have time to discuss at length.

Again, thank you for your prayers, and words of encouragement.

Lenwood and Kathy

Psalms 23 - The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside thestill waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD ! for ever.

My Visit with Ashley 8/3/2010

Hello.
I went to visit Ashley last night. Yesterday she had her surgery. They took a piece of her hip bone and the marrow to test. We won't know anything for a couple days. So, please continue to pray for her. She seemed like she was doing pretty well. She was tired coming right out of surgery, but it was so good to see her.
Again we ask that you will please lift Ashley, her family, and her doctors up in prayer. Please pray for wisdom. Please be a blessing to Ashley by leaving a comment to let her know you are praying for her. Also, again, please spread the word and have other people pray and become a 'follower' of this blog. Thanks for all those who pray! You are a blessing; please continue.

8-2-2010 - Update

Ashley's surgery postponed til tomorrow in order to make sure her platelets are in order. Plus need to make sure the blood thinner is out of her system. Location of biopsy is still the lower back or one of the hips.

Still battling the fluid -' back to 100 lb. legs'.

Pain is basically under control, other than discomfort from fluid. One shoulder though is still feeling 'weird' - using heating pad to help relief the 'stiffness'.

Again, thanks for your words of encouragement, and for your prayers.

Sunday 8-1-2010 Update

On Friday, it was 'felt' that the fluid retention was now under control, so her meds were reduced. Mistake - by Saturday morning, her legs/feet were almost twice normal size from fluid. This cause considerable discomfort and pain - "Feel like I've got 1oo pound legs!!" Doctors increased meds, and along with a blood transfusion, she is now feeling much better, and in better spirits.

Surgery 'tentatively' scheduled for Monday am, with site location either hip or lower back. These are felt to be the 'hotest', thus, best location to hopefully determine underlying cause.

Thank you for your words of encouragement, but most of all for your prayers.

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!