Joseph was not feeling well this morning and vomited about 5 times. We started giving him Zofran (an anti-nausea medicine) which kept him feeling good the rest of the day. Yesterday was also the last day of steroids and tonight he started acting weird again--really wobbly and uncoordinated and complaining more of headaches, so we put him back on steroids to help him walk better and function by himself.
We asked our doctor if we could move up the beginning date for Avastin, but the doctors at St. Jude feel strongly that it is not safe to do it until 6 wks post-operation (because Avastin can interfere with wound healing).
So, we are left with him basically falling apart before our eyes and there is nothing we can do. We thought about taking him for a CT scan, but even if they found something different they couldn't treat him until August 19. We will keep him home and hope that steroids help his symptoms. We don't know if the vomiting was a bug or if it is from the tumor, but we will keep giving him Zofran if he continues feeling sick.
We are frustrated that we can't do anything, but this is where the reality of this tumor hits home--it is not humanly curable and even doing Avastin is not a guaranteed "cure," as much as we hope it will be (and of course we still hope and pray for complete healing). So, please just pray Joseph will keep being in good spirits and that all of us will have patience and wisdom in taking care of him. I feel like we are definitely back in survival mode, just trying to brace ourselves for the next hurdle, hoping things don't get worse. We feel so helpless in this situation but we know we serve a God who is able to meet all our needs. He always has for our family and we know He always will. Thank you all for praying for us, calling and emailing, and serving us in so many ways.
Love, Allen and Gillian
Thursday, August 7, 2008
Please Pray
Posted by Allen and Gillian at 11:48 PM
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41 comments:
I am fighting the urge to get in the car and drive 'home' now (its 1 am). I'm actually up thinking about you guys and saying prayers for you, unable to sleep. Praying, praying, praying.
Me, too, Jennifer.
Praying and trusting,
Mel
Hi Gillian and Allen,
just to let you know that we are always thinking of you and your selfless struggle to be there for Joseph, Holly and for each other.You are an example to us all and we are full of love and admiration for you.
James,Ingrid,Chloe,Stephen,Sophie, Lucy,Alice and Maud x
Gillian and Allen
Thinking of you all the time.
I'm very emotional myself now we have just brought Darragh to the airport for his long stay in the States. We'll miss him so much.
It breaks my heart to read about little Joseph. I have no doubt that you have the patience and wisdom you pray for. You're both such loving parents.
love you all Ann Ben & the boys
Praying for Joseph to feel better soon and for God to give you all supernatural strength.
Catherine
praying and hurting for you.
norma
you continue to be in our prayers.
laura, peter, and pierce matthews
Gosh, it's so hard to even know what to say. I just wish there was something we could all do to physically help you in some way. Just know that we are praying hard for a miracle and asking God to give you supernatural strength. We love you and we're here if you need ANYTHING! Holly is always welcome to come play with the girls. Love you!
"Pardon for sin and a peace that endureth, Thine own dear presence to cheer and to guide, strength for today and bright hope for tomorrow - blessings all mine, with ten thousand beside. Great is Thy faithfulness, Lord, unto me."
Praying for patience, wisdom, grace, healing.
May the Lord of all comfort and strength be with you this day. I am fasting for Joseph. May God help you and lift you.
I can tell by his photos that Joe P. is a strong, happy boy who thrives from all the love around him. I pray for relief of his symptoms and peace for your family.
Continuing to pray for you all to find comfort and peace and for healing in Joseph.
Meg Bloomer
God!!! - I cry out to you, who know the needs of Joseph, Allen, Gillian and Holly oh, so well... please meet them in a special way today, assure them of your care for them. Help Joseph not to feel nauseous and throw up. Give him relief from the symptoms he is experiencing. Give Allen and Gillian much grace and strength as they love on and encourage Joseph in this difficult time. Please be close to your children during this difficult time.
Praying big time...I am sure beyond frustrating and heartbreaking. I LOVE YOU all and will just keep praying my simple prayer Gillian. I miss you and am always thinking of you...we all are. Jody
Praying continuously for you all,
Carey Heid (SJ friend)
we will be praying for a supernatural healing for joseph, and strength for you all.
Praying for ya'll!!!!
Corrie Scott (friend of SJ)
Joseph, (and Allen, Gillian, and Holly) I am praying for you all. It is very painful for me in this moment. I don't know what God's plans are for you, but I believe in Him anyway. Love, Big Daddy
Please God heal Joseph and keep his family strong.
Tell Joseph and Holly that Josephine and Adela are praying nightly for them. We love you all!Sending a Hug from Atlanta,
Vivi
So sorry
Someone else's words, I hope they soothe. Loving you, missing you, heartbroken for lil Joe's struggle. He is great. Love Chlo
The Waking, Theodore Roethke.
I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.
We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.
Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Light takes the Tree; but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.
Great Nature has another thing to do
To you and me, so take the lively air,
And, lovely, learn by going where to go.
This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.
I check the blog almost everyday - you are in my thoughts and prayers constantly.
Love,
Melody
Psalms 5:11-12
"But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. For surely, O LORD, you bless the righteous; you surround them with your favor as with a shield."
Praying that God will grant you grace and strength for this day and this hurdle, and that the nausea will be a passing thing.
I know that feeling of helplessness. And I am praying for complete healing for Joseph and for strength, comfort and faith for you all.
I'm with Jennifer... I wanted to drive to see you last night too. You are on my mind non stop. Praying for dear Joseph all day.
look at all these people who love you so much. sooo good for my heart and yours I'm sure.
I love that verse from Great is Thy faithfulness and I love Big Daddy's comment.
I love our families and friends!!!!!
Thanks everyone for all your love and prayers...it ministers all of us:)
Praying that Joe P.'s symptoms will hold off and not worsen. Praying for all of you and Gillian, from a mother to amother, I am hugging you as tightly as I can.
Praying every day and night,
The Booth family
God, give them eyes to see and ears to hear You and Your voice during this tough time. Help them hold strong to your great and precious promises. Lord, I pray for complete healing knowing in all certainty that You have the power to do so.
In the powerful name of Jesus, AMEN!
We love you guys and are standing with you through this.
i AM SO VERY SORRY TO HEAR THIS LATEST REPORT ON jOSEPH. wHAT A PRECOUS CHILD HE IS. i AM PRAYING AND PRAYING FOR A MIRACLE. gOD'S PEACE AND COMFORT TO YOU NOW AS YOU WAIT FOR THE MEDICINE TO BE GIVEN. mAY YOU ALL GET REST AND CONTINUE TO BE UPHELD IN gOD'S STRENGTH.
lOVE,
aNN lEWIS
We are (literally) crying out to God for precious, beautiful Joseph and for strength for you. We love you, The Gygers
Lifting up prayers for you from Denver. Our hearts are aching for you....we pray for healing.
Jenny and Drew Matthews
Still praying and hoping
Gwen
thinking of you all so much and lifting you up in prayer! as are so many others i can see! know that the body is praying over and for your sweet boy and family....love to you all!
Praying for you constantly-
Love,
Brenda
Gillian & Allen,
I know Allen from middle school and through JR Allen. Juliette and I are good friends from high school. She sent me this blong a while ago and I check it a couple times a week. It breaks my heart to read your stories, but also amazes me the amount of strength the two of you have. Your family has been in our thoughts and prayers. Stephanie Lowry Goddard
I love you guys and I am praying like crazy!!
XOXO,
Orlagh
Allen & Gillian,
We're praying, like so many others, for God's will and peace, strength for each moment, patience and love enough so Miss Holly feels held, laughter and hope enough for Joe P. to remember. Praying for you two, too, finding each other in this each moment and holding each other's hand and helping each other breathe. God knows every little sweet hair on Joe P.'s sweet head.
Anna & Shane Caudill
I don't even know what to say, but just wanted to let you know we're reading the updates and praying for all of you. I hope the feelings of helplessness and frustration lessen. Keep hoping...
Crying out and praying to our Lord Jesus Christ who is able to do exceeding beyond what we can think and imagine. Please give this family peace and rest. Please heal this precious little boy. Please make your presence very evident to them in the midst of these horrific circumstances.
I will pray for Joseph's family!! Be strong and you will get through this!
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