Thursday, July 17, 2008

Progression

We heard back from the final pathology today and talked with our doctor at St. Jude. They discussed Joe yesterday at the tumor board and they all confirmed what the surgeon suspected, that the tumor was back.

We are planning on starting joseph on Avastin/CPT-11 which is another trial drug combination. He won't be in the trial version which will allow us the same medicine and treatment and also the freedom to give him any other supplements we want. However, we can't start that treatment for five more weeks since it causes poor wound healing and Joseph just had surgery. While we wait, he will take one cycle of etoposide by mouth for two weeks to try to stop or hold the growth of the tumor cells. Then we'll start Avastin/CPT-11 which is given IV every two weeks at St. Jude.

We are obviously very down about the news, but as Gillian said in an earlier post, we are not ready to give up yet. Joseph is doing great and is starting to play normally again, running and chasing around the house. He gets stronger every day, and as we taper off the steroids, he is sleeping more as well. Please continue to pray for daily improvements and mobility, that we would all get sleep, that this new treatment would work, and that he would not have many side-effects from the etoposide. Thanks for all the support you give us through your words and prayers.

36 comments:

susan and brian said...

Delighted to hear Joe is running about. It is good to hear that he will be starting on another treatment and hopefully this will be answer to your prayers. Thinking of you all at this difficult time. Wishing you a peaceful night tonight.

randibisme said...

I am also happy to hear that Mr. Joe is running around, having loads of fun with Holly. The whole family is praying for you and we will not stop offering up our prayers for your family to Jesus!
Randi Booth

Jennifer said...

We are hurting with you and love you deeply.

Margaret said...

It's so disappointing (understatement of the year actually there) to hear confirmation of the doctor's suspicion. Although I am glad to hear that Joseph is recovering well and you are having fun together as a family. I will pray that faith and medicine work together for a miracle to heal him. I'll also pray for good sleep and minimal side effects. We love you guys and miss you!

Anonymous said...

This is my first post, but I have been praying for Joe since the beginning. I received Joe's information from our New Hope Community Church prayer chain in Brentwood, TN. I moved from Brentwood to Memphis 4 years ago and moved back to Brentwood 18 months ago. When in Memphis I volunteered at St Jude. While there I got to see God in action. Mircles happen everyday with God in control, so do not lose hope. I am praying that God will give you all you need during this difficult time! God Bless, Kim Riley

Jana said...

I'm so sorry the news was not what we all had hoped, but I'm glad that Joseph's spirits do not match the hard news. We're still praying.

The Kelleys

Anonymous said...

So happy that Joe is feeling better and is active! You all are in my thoughts and prayers daily. Keep fighting Joe!!

Carey Heid ( SJ's friend)

Jody (atlanta) said...

Praying big time..thanks for updating. I have been thinking of you all. No one will stop praying or fighting. Praying for good sleep and miracle cure. MISS YOU. Jody

Dee Dee said...

Praying for your precious boy and your precious family.

"How great the Father's love for us, how vast beyond all measure..."

Praying to Him who holds Joseph and all of you in His Arms.

LAURA said...

Im so sorry to read this news. That seems so trite to even say--such an understatement. I check the blog regularly and am continuing to pray with you. Such a precious, strong boy, and yall are such incredible, wise, patient, strong parents for him and an example for us. Love to you all,
Matt & Laura Peneny (harris)

Kelly said...

I am praying for you and checking in on your blog regularly. Thank you for updating us all so frequently. I am praying for God to give you peace during this time! I am happy to hear that Joseph is getting stronger everyday.
Take care,
Kelly Lathem

Anonymous said...

I am heart broken over the news and hopefull still in God's redemptive plan.
- Ange

Craig and Gwen said...

Praying for ya'll so much...

Gwen

Anonymous said...

May the God of comfort be so present in your home.
love, Kissell's

carrie hayes said...

i am so so sorry. i am praying for you all and for healing for Joseph.

The Morginskys said...

i'm so sorry and our hearts hurt with you and hope with you too.

Allison & Jeff said...

When we said our prayers tonight we each prayed for him, one by one. Please know that SO many prayers are being said, and you are all being lifted up by many hands and hearts.

Anna Tester said...

"The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint."

Isaiah 40:28-31

We are praying this for Joseph and each one of you.

Thank you so much for letting us walk with you.

Go Joe Go!!! Soar!!

xxxoo.

Lynn T said...

Allen, Gill, Joe P. and Holly,
Praying for you all and as Jennifer said, hurting with you.
Love you so much, Lynn
Praying for good sleep tonight.

Nana said...

Isaiah 40:11 says He tends his flock like a shepard:He gathers the lambs in his arms and carries them close to his heart;he gently leads those that have young.Gillian and Allen Gods amazing grace is carrying you and has carried you both for the past eight months.Allen and Gillian you are both great parents and the Lords kindness and goodness is so evident in you and also in Holly and Joseph.I wish you had seen Holly run up to Joseph( when he was sitting in his stroller in the zoo}and kiss him on his arm she did add a few licks(that is just a Holly thing!)then they both just kissed and hugged each other.Joe P. looked at David andI and said Holly is being sweet!!We caught a little of that on video and it was a magical moment.They both loved the meer cats and today Joseph"s favorite animal were the monkeys usually its the white tiger the alligators came in about third!! At dinnertime we sat in Moes by the window and Joseph looked out and said its a very pretty day Nana.As we drove back to Saywer Bend the sun was beginning to set but Joseph was so glad it was still visible when he got home....that boy never wants the day to end!!We are going to pray for a miracle and for the new drugs to work.Go Joe go.We love you all dearly Sleep sound in Jesus."This is the day the Lord has made let us rejoice and be glad in it" Nana Grandad and Davey

Anonymous said...

We are saddened by the news and praying for the things you asked. Joseph is amazing - wish we could see him and all of you. Praying for a good night's sleep for all.
Love, Mel and Steve

Kathleen said...

I don't recall seeing children the age of yours so openly affectionate with each other except for a fleeting moment. But there's picture after picture proof of how dearly they love each other, holding hands, enjoying each other.

God has given you much.

Sara said...

Thank you for keeping us updated so faithfully. We are continually lifting you up and clinging to God's faithfulness.

Love,
Rob and Sara

Wrights said...

I am so sorry about this news. We hurt for you. We are still praying every day for complete healing and for sleep for everyone. Glad that Joseph is playing and running around.
Nathaniel, Rebekah and girls

kelly robinson said...

Praying and believing God's promise in Mark 9:23, "Everything is possible for him who believes."

Anonymous said...

Praying that the sufficiency of Christ for your day to day challenges sustains your family.
Love,
Catherine Morris

carolyn & dave said...

Praying for plenty of rest and play time.

Carolyn

Anonymous said...

Hope you have a great day today as you see this world through the eyes of Holly and Joe P. Every day is a treasure, an adventure, a gift. And at the end of the day, when Joseph asks, "What was your favorite part of the day?", there will be so many to choose from you want be able to settle on just one.
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus...I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, with plenty or little. For I can do everything with the help of Christ who gives me the strength I need. Phil. 4:6-7, 12-13

Brea said...

We will keep praying for Joseph's healing, and for your peace and endurance.

Anonymous said...

Well I think Nana should start her own blog! I am always so encouraged when i read her comments. We will continue to pray for strength and peace for the both of you, as well as a miracle for joe p. I have also been praying for Holly.

love,

paige (and the rest of the cunninghams)

KCAimee said...

Still here...still praying...just wanted you to know.

notes from em said...

we are praying for strength beyond all measure and a super-natural healing that can be given by the Great Physician. We are praying for healing and for rest.

joann said...

thank you for letting us know how to pray for you...we will pray. love from the rosenbaums

Jody (atlanta) said...

Thinking of you...missing you all. Love hearing from you all and sounds like kids having good time with Nana and family. Love you...

Emily D. said...

Joseph is on my mind, and I pray for him and all of you continually.
Love,
Emily

CPreg said...

Will pray for a miracle; have been thinking about you today... because of Joseph, I'm setting a goal to run a marathon and will pray for him as I train! May God strengthen you through these days, Charlene