I'm writing with tears streaming down. We just heard that they have diagnosed him with a rare liver disease associated with the transplant called "sinusoidal obstructive syndrome" or SOS. Basically, there are clots in the lining of the veins of his liver stopping the flow of fluid, and actually reversing the flow causing fluid to build up in his stomach. The ultrasound this morning confirmed this is the case.
Up until recently, there has been no cure for this and it's an end game situation. There is a medication called Defibrotide they are very hopeful about via clinical trial that they are working on getting for him. It is only made in Italy and there are hoops to jump through but they assure us he will get it. It takes a week or two for response from the medication, and he will be on it for at least three weeks. In the mean time, things are expected to get worse and they may need to drain his belly multiple times to allow room for his kidneys to function. His stomach looks twice as big as it did last night and he hasn't been able to eat or drink. He is in such pain and discomfort already, I can't imagine two more weeks of this progressing... I'm still in shock.
Please pray they can get Ian in the clinical trial and receive the Defribrotide quickly.
Please pray he responds as fast as possible and it is completely effective in treating his liver. Sometimes people never fully recover even with the medication and need to have their stomach drained regularly for the rest of their lives. Please pray this is not the case with Ian.
So it seems the heat has been turned up a few notches. Please pray that when we walk out of this furnace we'd be like the young men in Daniel- glowing brighter with a testimony and not even smelling like smoke.
a place for news and prayer for the Brown Family during Ian's journey with Leukemia. please encourage them by leaving a comment on the posts you read. check out the "help out" page for information such as where to send mail...
Oh no, Christy, I am so sorry!
ReplyDeleteEven if I don't comment regularily, I read every blog post and you and Ian are always on my mind and in my prayers. You two are such beautiful people and I can't believe you are going through this. It makes me so, so sad!
Please know that despite the recent lack in communication, you and Ian are always in my heart and I think often of all of the experiences we have shared and the tremendous love you both have shown me.
Christy,
ReplyDeleteDanielle and I are sending our prayers and love. It is so hard to deal with this kind of stuff and infinitely more when it is your love's life. If words could fix this sort of stuff I'd scream until the rocks cried out and until I was too hoarse to do it and then I'd whisper as loudly as I could.
Just know that we are praying with that intensity. I pray every time I think of You and Ian which is more and more these days. It is frustrating to be powerless to do anything and in these moments faith in God may seem like a frail thing. Just know that if His Word is true, then He will never leave you or forsake you.
Loving you from Maine,
Jaime and Danielle
Praying for a miracle and peace for you that passes understanding.
ReplyDeleteMuch love,
Bill and Diane
praying for ian and for blessings of strengthened hope
ReplyDeletePraying for you all, dear Ian and Christy. Pouring out all these requests to God on your behalf, and praying He will cover you with His peace that passes all understanding.
ReplyDeleteMany here @ Elm Street are praying !!
ReplyDeleteWe will be praying for all of you. Love from the Turners
ReplyDeleteI am praying!
ReplyDeleteJust emailed you... praying for you... for Ian.. for Asha and Fiona. Praying God's healing power would reverse the clots and resulting damage... that doctors would be unable to explain it other than a miracle. And for grace and comfort and knowing His presence in the midst of the fire...
ReplyDeleteChristy, as I told you on the phone, you have so many friends praying — in faith that God will raise Ian up in His own good time. The prayer of faith saves the sick. We're praying in faith.
ReplyDeletePraying here in Oregon for God's indescribable peace to wash over you all and give wisdom where and when needed.
ReplyDeleteDonna Durbin
Kristen and I will be praying!
ReplyDeleteGrace and peace,
Josh Davis
Christy - Trusting in our Father's care for Ian. May He do exceeding abuundantly above all that we can ask or think . . .
ReplyDeleteWe love you both!
Scott & Kim
Fidelitas Dei!
We will be praying!
ReplyDeleteI don't know you but have been following your story via a mutual friend's FB posts. Praying for all of you to experience the Shalom of Jesus deep in your being, that health will return and for wisdom for the doctors.
ReplyDeleteHello Christy, I'm Elaine's friend and just heard the news of Ian's situation. I will be praying for Ian and just put in a call to "Kenneth Copeland's Ministries Prayer line". I will continue to pray for your husband. I posted your situation on my facebook and asked my friends to pray for Ian. There is great power in numbers and prayer are heard. So on that note just let God to his business of healing...it is all done in his perfect timing not ours. Life throws us curves balls but God gives us the strength to overcome. I send my love and prayers to your family....God does here our prayers for sure. Let his situation be a testimony of God's great miracles. Love Stephanie
ReplyDeleteDeep Peace to you and Ian. Praying every day. We love you guys!
ReplyDeleteWOW COME ON GOD \o/
ReplyDeleteWOW COME ON GOD \o/
ReplyDeleteWe love you guys and are praying for your health, peace, and joy. Aaron and Kelsey
ReplyDelete"Be still and know that I am God" Psalm 46
ReplyDeleteI know God is in control and I know that he is the greatest doctor that has ever lived and he knows every part of our bodies better than any doctor. I pray for healing and peace for ian and I know he is going to get through this.
ReplyDeleteSweet friend i am praying for you all! I pray that God's presence would be thick around you and that everywhere you turn you would see the comforting face of our Lord. My heart hurts with you for this fire that you are walking through
ReplyDeleteThis is Ian's old roommate from college, Jacob Moya. I have been following your winding road the last few months. Ian is in our prayers, here. We hope for the best. Thank you for your diligence in these posts. You all seem to be dealing with these compounding issues with grace and joy. Praise the Lord for His comfort!
ReplyDeleteBe well, Ian!
Hi Christy,we have a mutual friend, I am praying for you and Ian. May you feel Gods loving presents, in the room tonight. I pray God will touch Ian from his head, to the tips of Ian's toes. May HIS arms hold you and Ian and keep you all your days. Blessings and will continue to believe God in this healing.
ReplyDeleteShocked and distraught with you at this news, but continuing to pray for all of you through it. Abba loves you, Christy. When words fail, just make the Abba sign like Fiona...he knows your needs, your fears, and your heart's desires. Hugs...
ReplyDeletePraying for you...trusting His peace to be all over you. Standing with you and asking Father to comfort you through this hard hour.
ReplyDeleteMy heart goes out to you both in this firey trial. Praying with you for a victory that removes all trace of smoke, save the scars that, as with Jesus, testify to your perfection through this holy suffering. You and your ordeal are so precious to the Lord. If you offer all this suffering in intercession for others in their pain or sin, you will see miracles for them.
ReplyDeleteLove and prayers
Christine Broesamle
"But as for me, the nearness of God is my good; I have made the Lord God my refuge, that I may tell of all Thy works" (Ps. 72.28). Our prayers are with you. Love, Chris, Anna, Beniam, Evangeline, and Will Reno
ReplyDeleteWe are praying for you and we hurt with you. May the Lord fill each moment with his comfort, faith, peace, and hope. Here is a song that I was thinking about when praying for you all this morning.
ReplyDeleteBrother, let me be your servant.
Let me be as Christ to you.
Pray that I might have the grace
To let you be my servant, too.
We are pilgrims on a journey.
We are brothers on the road.
We are here to help each other
Walk the mile and bear the load.
I will hold the Christ-light for you
In the night time of your fear.
I will hold my hand out to you;
Speak the peace you long to hear.
I will weep when you are weeping.
When you laugh, I'll laugh with you.
I will share your joy and sorrow
Till we've seen this journey through.
When we sing to God in heaven,
We shall find such harmony
Born of all we've known together
Of Christ's love and agony.
Brother, let me be your servant.
Let me be as Christ to you.
Pray that I might have the grace
To let you be my servant, too.
With love, Osh, Shana, Selah, Eden, Faith, Adam, and Ryder Bartlett
Praying.
ReplyDeleteCate
I am thinking of you both, admiring your courage, and praying for Ian's recovery. You have been so challenged, and your faith has helped you face it bravely. I admire you, and take you as an example of dealing with adversity.
ReplyDeletePraying! I love you both so much.
ReplyDeleteLord have mercy. Let this cup pass. Jesus, you said that we could pray to move mountains. We're praying to move clots, all the way down those veins and OUT. We're praying for your "fast track" intervention on this trial and medication, to get it here quickly and prepare Ian's body to respond to it smoothly. We're praying for relief from the bloating and the pain.
ReplyDeleteLord have mercy. We know that everyone who has encountered Ian in this journey has seen Your Spirit in him, and there are so many more who need to see Your Spirit in him. We pray for life and healing. We know that Ian will rave about You for the rest of his life, and this world needs more people raving about Jesus! For the sake of Your glory, Lord, strengthen and preserve Your servant Ian.