News & Updates

Quinn

Quinn

Marc, Quinn's dad will be running in a half marathon in order to raise awareness for EB, Epidermolysis Bullosa, in Akron, Ohio. If you live in this area and you are a runner why not train for and run this half marathon and join the other Butterfly Army and raise awareness for EB. Maybe you are not a runner but would like to contribute, why don't you advertise this event on your blog and see if there are any others out there that would like to be a part of this. If you are interested in racing, please visit Quinn's blog and leave a comment letting Marc know. You need to sign up with your email address in order to access her site. Thanks!!
Below is taken from Quinn's CarringBride Site.

One last thing that I just didn't think to ask. I mentioned my own efforts to run the Akron Half Marathon September 29, 2012. And then one of my best friends asked if he could train and run it with me and later he said his brother-in-law was going to join us too. And it got me thinking....why not have a whole swarm of butterfly army members all run it together??? How cool would it be to have a whole swarm of purple shirts. Can you imagine the buzz we could create for EB with everyone wondering what all the shirts are about!!!!!!! If you want to be in, start running now, the more people the better. 

Ian

Ian
Just had some scans this past Thursday and I found out last night they were clear!! Praise God!! His mom, Alison, was concerned because if these scans came back showing new cancer then there would be no more treatment for Ian. Please continue to cover Ian in prayer as he will be having another set of scans in 3 mths. Please continue to pray for NED! No evidence of disease.

Lucy
Just had scans last Thursday as well and they came back clear!! Praise God!! NED!! Continue to pray for her as well!!

Summer

Summer WOOT!!! Praise GOD!! This medicine combination is WORKING!! Her muscles are getting stronger. Please continue to join me in prayer for remission.

God is so good!

Psalm 43:4-5 NIV

Then I will go to the altar of God, 

To God my exceeding joy; 

And upon the lyre I shall praise You, O God, my God.

Why are you in despair, O my soul? 

And why are you disturbed within me? 

Hope in God, for I shall again praise Him, 

The help of my countenance and my God.

Thank you for praying and rejoicing with me.
Blessings,
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Some Updates

Exodus 34:5-7 NIV

Then the LORD came down in the cloud and stood there with him and proclaimed his name, the LORD. And he passed in front of Moses, proclaiming, “The LORD, the LORD, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin.... 

I have some updates to share. Italics and green means copied directly from the web page of the person being written about.

Sam had scans and blood work this week and the news is good! His scans are stable and the blood work perfect! Praise God!! This is the second set of scans that have come back stable. Continue to pray for no evidence of disease and for one healthy boy.

Ansley had her second set of scans too and they came back NED!! No evidence of disease! Praise God. She is also really happy as her hair is long enough for piggy tails. :) Once again, God has blessed us with great news today. Our baby girl's scans were clear of all cancer!
It was a wonderful day in many ways. It is sweet to have so many people praying for Ansley at once, it is beautiful when the medical people working with her are patient and loving, and it is AMAZING when you get a phone call saying everything looks clear. Praise be to God and God alone for the blessing of this good news.

Katie Cancer free and going back to work!! Hello beautiful people!  Steve the lonely eyelash is no longer alone.  My hair is growing back and my eyebrows and eyelashes have sprouted.  This is Katie writing.  I wanted to just tell you how much I appreciate your support, your encouragement and prayers.  Without you, this journey would have been much more difficult.  I can’t describe the amazing feeling of being surrounded by people from around the globe who are rallying with me and carrying me through this.  I know that you will all continue to BELIEVE with me and fight with me that this will go down in my storybook as the one and ONLY time cancer and I took it to the ring.  My grateful heart shouts out daily THANK YOU THANK YOU THANK YOU FOR LIFE!  Each day, every breath, truly is a gift.  And I will never take it for granted.  I can’t tell you enough how much your encouragement and support has meant, and continues to mean to me.  I will be grateful for the rest of my life! 

Phoebe's immune system has kicked in and she is on the mend. It was a very scary time for her last week as she was quite ill with sepsis and a terrible reaction to the chemo medicine that is being used on her. Please pray that the doctors will know how best to treat this very aggressive cancer. Advanced Neutrophil Count, 18,000!! She looked into my eyes! She has been rather awake at intervals all throughout the day and she looked into my eyes with recognition. It was the best feeling in the world to see her seeing me. She is of course irritated at the breathing tube down her throat and greatly displeased that her arms are tethered to the bed so she can't pull it out, but she is waking up.

Quinn 3%!! That seems pretty low but that is what is happening in the new skin growth for Quinn and this is very encouraging for her parents and the doctors. She has 3% engraftment IN HER SKIN!  And, we saw some pretty new pictures too!  And, guess what they show????  That's right, IT'S WORKING!  She has even more of the missing proteins in her skin and doing what they are supposed to do!  There it is again, this thing called HOPE! It's means that when Quinn overcomes the other struggles she is facing that she can look forward to continued healing, continued growth and a lifetime filled with smiles!

Bree is in need of a miracle from God On Friday, we had an unexpected meeting with our team of doctors. We heard the heartbreaking news of how her tumor is so aggresive and is not growing like typical desmoplastic medulloblastoma. we were told she needs full brain/spine radiation but she is too young. Age five or older is best but she must be at least three to receive a lower than needed dose of radiation. Even that would leave her with mental/emotional challanges and physical disabilities. Every child is different and devastating effects vary. All are unacceptable to a precious child still growing. Bree is so very smart. It is difficult to not wonder what she would have been like had she not already endured such harmful treatment to save her precious life. So unfair !! Chemotherapy would also be needed again at very high doses. the nephrologist expressed his concern at the toll it would have on her already damaged kidneys. He explained that some children require dialysis and/or kidney transplants after chemo damages them, Though Bree is no where near needing one now, the future damage of high dose chemo could quickly change her kidney functions. All of the doctors agree that chemotherapy alone without radiation will not stop the cancer. They also all agree that she even if she were to receive radiation,she would also need the chemo to "kill any flotaing cells". The bottom line of the meeting is her only chance for survival is "a miracle". To say we are devastated is an understatement. Heart broken really doesnt describe the pain we feel. I cant even begin to know what her mommy feels. Watching her heart break and thinking of Zay and Bree is almost more than this Gramma can take. I love all of them with all of my heart and feel so helpless.I will not stop believing and hoping for the miracle it will take to save Bree.


Romans 5:5 NIV
And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

2 Corinthians 1:10-11 NIV
He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

Thank you for praying. Please continue to pray for those that are in need. Remember Summer also as she is half way through a regime to put DM into remission. Pray for strength to make it through with her eyes on Jesus and a smile on her pretty face.







Blessings,
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Joy is Found in Suffering

Matthew 5:3-12 NIV

He said: 

Google Image

“Blessed are the poor in spirit,
   for theirs is the kingdom of heaven.

Blessed are those who mourn,
   for they will be comforted. 

Blessed are the meek,
   for they will inherit the earth.  

 Blessed are those who hunger and thirst for righteousness,
   for they will be filled.

Blessed are the merciful,
   for they will be shown mercy.

Blessed are the pure in heart,
   for they will see God.

Blessed are the peacemakers,
   for they will be called children of God.

Blessed are those who are persecuted because of righteousness,
   for theirs is the kingdom of heaven.

“Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.

God allows bad things to happen so lessons can be learned or so people will come to know Him. I have been really spending time praying for Tripp and Quinn. "EB"ing a Mommy Tripp's blog and Quinn's CaringBridge site, (which in order to read you need to set up an account which is free), tell the story of two very brave, strong and very young souls who have known nothing but pain and suffering their whole lives. I would encourage you to head over and read their blogs to see the joy in the Lord that these parents have found while caring for their very sick young children. I cannot imagine the pain Tripp and Quinn go through every single minute of their lives, yet through it all God is there and people are coming to know Him through witnessing these children suffer and reading about the faith in God these parents have. These testimonies are strong, they are filled with God's presence.

Parents are cherishing their healthy children and people are being thankful for their lot in life when they read stories like these. Many people are lifting Tripp and Quinn, and other children like these, up to our Lord for relief and comfort. I believe these children are resting in the arms of Jesus Christ and He is ministering to them in ways that we cannot see or understand. 

Please pray for Quinn and Tripp as right now Quinn is not doing well after her stem cell transplant and Tripp is in such a mess that Courtney just can't believe Tripp is still fighting to stay alive. 

Quinn

Courtney & Tripp

God bless and thank you!
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