Thursday, December 13, 2007

Treatment Plans




Hello Everyone-
This is Allen updating. We met with our neurooncologist today and we have pretty much decided to participate in a trial at St. Jude's in Memphis. We are still waiting to hear the exact details from St. Jude's about when we would start and housing and some other details. With Joseph's particular tumor radiation is the only proven treatment, but this trial uses a drug called Tarceva to augment the radiation and help shrink/kill the tumor. There are other drugs that have been used with radiation that have not shown proven benefit, but hopefully this one will. Our doc recommended using some kind of chemotherapy and we decided that this would be the best agent given it's lower side-effects and better overall tolerability. So we don't know when we would start, probably soon after Christmas, but they may want us there before to get things moving. So to all family and friends around the memphis area, we will probably be seeing you soon. Otherwise, Joseph seemed to be progressing fine according to the doctor and should be much better when he is totally off of his steroid taper.
As Gill wroter earlier, we are struggling to get Joe motivated to get off the couch and playing and walking. Target only has so many cars. Please continue to pray that he will want to play and walk. I think he gets discouraged knowing that he can't do what he used to do so easily. The picture above is from Joseph's trip to target where he walked around the aisle (barefoot of course) to pick out a car.
Holly has been entertained by her Nana most of the week going on fun walks and trips to the store and such. She tries to play nurse to Joe feeding (sometimes force-feeding) him goldfish and bringing him juices and patting his head. Thanks to Lynn for visiting and to Nana who has been here this whole week keeping our house clean and Holly entertained. And thanks so much to Beth and BJ for letting them stay at your house. Also thanks to those who have offered up their houses for our extended family. There was an overwhelming response and it means a lot to us.
Again, I can't express how much it means to us that there are so many people praying for Joe P. We thank you so much for your prayers, comments, letters, gifts, meals, houses, emails, phone calls, and drop by's. We are mostly worn out and worn down but knowing that we have a strong community behind us is unbelievably encouraging. We will keep you updated.

40 comments:

paige said...

Scott and I will be in Memphis the week following Christmas. Please let us know what we can do to help (jennifer, you can't hog all the pampering!). We will be in touch via email as it gets closer.

paige

Diana Willis said...

I will pray for Joe and for you to have peace and faith that he will be healed completely. My nephew is fighting cancer (sarcoma - which was wrapped around his optic nerve and pressing against his brain so they could not do surgery)as well and has been going through chemo for 3 months and radiation for 4 weeks now. He just turned 3 this week. I have to admit that children are amazing and can teach all of us so much about life. If you want to read about my nephew's site for encouragement you can go to: www.caringbridge.org/visit/devinislam - I know if you had any questions or wanted to talk to my sister, you could email her there. Again our prayers are with you and your "Big Guy"!! Hugs, Diana

Jennifer said...

I am so glad I live in Memphis so that I can be here with you guys when you go through this. Praying, praying, praying.

I love you,

jen

Anonymous said...

Thanks for the update. How nice to have Jenny and Matt in Memphis as well as other friends that will be there for support. We're only an hour from Memphis and could house any family [except Big Daddy or any friends for as long as they wanted to stay. We pray that God will continue to guide you and comfort you. Tell Joseph that there are lots of cars in Memphis!! We loved a story that Norma told us about a girl in your mom's class that asked her mother "Didn't God do a miracle on Christmas? Well it's time for Him to do another one for Joseph." We're praying for a miracle. Love, Martha and Karl (can't wait to hug you all!!)

suzanne morris said...

Ps 72:4 He will defend the afflicted among the people and save the children of the needy; he will crush the oppressor.

I pray that God will defend Joseph against this enemy within his brain...that He will use this upcoming treatment to crush this oppressor.

We will miss you while you are away and we will be depending on this blog for updates. Thanks so much for letting us know how you are doing.

On a lighter note, I was commenting to Grace on how well written all your postings are, how articulate you both are in describing both the highs and the lows. She reminded me, "Mom, they were both English majors." All that writing training still shines through:)

With love, Suzanne

Anonymous said...

Thanks for the update. We are praying for the efficacy of the treatment and for the many details involved with going to Memphis.
- Andy P.

Vann and Norma said...

Thanks so much for the update and the pictures. You have made us feel so close to you even though we are far away. We can't tell you how often when we are out, total strangers will tell us they are praying for Joseph. The body of Christ is interceding on your behalf. We love you Allen and Gillian. vann & norma

Anonymous said...

Loved seeing Joseph walking with Nana in Target and the picture of "mother" Holly feeding him. Thanks for posting the pictures. You and Gillian are constantly in our thoughts and prayers. Today when I went to the office at NHA to turn something in a 4th grader asked me how I was doing and told me that she was praying for Joseph. I told her that I was really missing you all and that I was having a hard day today. She said, "Can I pray for you right now, Mrs. Peabody?" And, she did. She put her arm around me and prayed the sweetest prayer for Joseph. Every student I meet in the hallways says that they are praying for Joseph. It is just overwhelming to see their faith shinning through. It blesses my heart.
I am thankful that God is opening up St. Jude for Joseph. It is an amazing place, full of hope.
It has been cloudy and rainy here for a few days, but mid morning the rain moved eastward and in between the gray clouds was the most beautiful azure blue sky. I was reminded that while the weather had been gloomy, behind those clouds was the blue sky. I thanked God for the beautiful sky today, and for the reminder that there is peace and hope in the midst of the storm.
Love, Mom and Dad

Courtney said...

I'm in Memphis and will be glad to do ANYTHING to help you all while you're here. I love to cook and bake, so you won't lack for food. Will Holly come with you? If so, I can watch her and WK if you two, Jennifer, and Matt want to grab dinner or whatever. It is my privilege to serve you guys...Jennifer's one of my best friends; therefore, you guys will be too.

*Courtney S.*

Kate Etue said...

I just had to tell you guys this, as I thought it was pretty amazing... I've been updating my contacts list about Joseph, and an author I worked with a few years ago who lives across the country and has no connection to our social circle had already heard about Joseph through her son, who heard from a friend, and so on! So, for every person who's posting a message here, there's probably another 100 who know and are praying for you guys. I just thought that was pretty cool the way word is spreading. Praying tonight.

"Come to Jesus, and let him hold you in his arms."

Jody (atlanta) said...

Thanks for update and pictures. You all constantly in my thoughts and I love calling and hearing Joseph's voice on the answering machine. I am praying big time that Joseph gets more mobile, eager to play, and sleeping better at nighttime. Please know that Abigail and I always willing to stop by for some playing or watch the kids to give you two a break.

We will miss you greatly here in Atlanta, but know you making the best choice for your little one. I am so glad you have some family and support in Memphis.

Please let me know how I can help before you all head or while you in Memphis....we willing to help anyway we can. Please lean on us.

Love, Jody

scott cunningham said...

Great, we'll be in Memphis then. I cannot wait to see that little boy. He's going to be car'd out by the time I'm through with him. Seriously, though, we'll be there for about 7-8 days, and will do whatever we can to help you out while we're there.

nanna said...

Gillian and Allen BIG BAD JOE AND HOLLY BEAR.I GOT HOME SAFELY AND I AM MISSING YOU ALL ALREADY .I DID ASK GOD FOR A MIRACLE TONIGHT TO HEAL JOSEPH AND FOR HIM TO SLEEP WELL.AUNTIE SARAH JANE WILL BE THERE SOON AND THEN MIMI AND THEN SAM THE MAN SO YOU GUYS WILL NOT BE LONELY.DAVID AND BILLY SEND YOU HUGS TICKLES AND KISSES.LOTS AND LOTS OF LOVE NANNA

Mary Vagnoni said...

Thanks for the update and great photos, we are praying for miracles in Memphis.
Love Mary-on my way to Houston

Dave said...

We are so glad that Joe is up and about. We continue to pray for his spirit to return and also for the St. Jude treatment. Mostly, we pray for Joe's healing and your family as a whole.

Allen, don't forget that Perk lives in Memphis. I am sure he would love to have your whole family stay with him for an extended period. After all, he is a surgical resident and surely is never at home...

Margaret said...

I understand that St. Jude is miracle central. That is actually the first thing my mom said "you tell them to go to St. Jude"- I'll have to admit to her she was right. We will miss you while you are there, but you won't be any further away in our hearts and prayers. I know Jennifer and her community will surround you with support in Memphis. Thanks again for keeping up the blog and pictures- it means so much to read your notes and will be even more important to us in Atlanta when you are in Memphis.
Love, Margaret

The Dogs said...

Wow. I just read the email from Lulu Clark about your family. Unbelievable. My brother Matt recently had a friend whose little boy underwent some therapy at St. Jude's for nerublastoma. They had wonderful results and the little boy is home now. I will be praying for little Joe that he has complete healing and that the cancer is killed. Thanks for the updates. I will keep reading.

Em'ly Neff Owens

susan and brian said...

Dear Gillian and Joseph: Thinking about Joseph and you a lot. Just wanted you to know that God works in mysterious ways. As you may know, our twin grandbabies dies last week and while we were in Canada with Killian and Marie my office made a donation in their name and it was to St. Jude's in Memphis so as I told you earlier I had implored the twins to look after Joseph it seems it is working that way!! Love to you and especially thinking of Nanna Pauline. Love you all. Susan and Brian

Jennifer said...

Wow - Kate's story about how her author friend found out is so wild! Everyone is spreading the word to pray for Joseph!!

I can testify that Courtney can make a mean meal... You will be well cared for here. So many people will open their arms to you... And if they don't, they'll have to deal with me... ;)

carolyn & dave said...

I've heard nothing but the best stories about St. Jude's. There's a little girl in my church who has been treated there on several occasions. Her parents have asked for your address. They may be sending you a letter sometime soon. I'll be praying for God to encourage Joseph to get off the couch and play. God will you please put the spring back in Joseph's step. Thanks Allen for the update.

-Carolyn

Reg said...

If there is anything we in memphis can do to help, please let us know. St. Jude is a wonderful place full of hope. I've been there on several occasions when a good friend's son was there. That was four years ago; he is in first grade now. praying for all of you. - Reg Udouj

bc said...

Bella said, "I love you Joseph and sometime I will give you some kind of toy. I love you very much"
xoxoxoxoxxxxxxxxxxxxxxxxxxooxoooooooooooo

Anonymous said...

I am so glad to hear that you are coming to Memphis. A friend at my church is the head nurse at St. Jude's, and she (and many other medical personel in my church) have been encouraging/praying that you might be sent here because the care is so phenomenl. Know that I have 2 spare bedrooms for you or family members, and want to provide any support your dear family needs!

Much love, Carol

VA said...

Joseph must look a lot like his Uncle Sam did at that age...they both have the same irresistable spark

Sam is one of my favorites...he lived with our son Rob at the Oak and we keep up with him at Ole Miss...so we are concerned for his nephew and praying here in Little Rock...and Abbie Bailey is my daughter...maybe in the body of Christ there are far less than six degrees of separation.

I am another of the many mothers/grandmothers reading about your precious son and presenting his needs to the All-Wise Precious Son.

Virginia Bradsher

Anonymous said...

Yes, the Holy Spirit is convicting many of us to pray for Joseph. I am a member at Christ Community Church and I want your family to know that I am one of many who is before the Lord on your behalf every day. I have also been feeling led to resume contributions to St. Jude and your story is sealing that decision. As a new grandmother this year, I want your parents to know that I am praying for them, too.

alyssa & bill said...

Gillian and Allen,
Thanks for all your updates. We are praying for your rest and wisdom in the Lord as you make decisions about treatment in the days and weeks ahead. We are also praying often for Joseph. We're glad he is getting up and about more and pray he will continue to heal and strengthen.
Alyssa & Bill

libbysmom said...

Hey Gillian and Allen,
This is Kelly Maddux now Bourland from UT. I live on the same street as Jennifer in Memphis, let us know if we can help at all while you all are in Memphis. You all are in our prayers!

Brea said...

We are continuing to pray for Joseph's recovery and healing.

Brea said...

We are continuing to pray for Joseph's full recovery and healing.

Laurie said...

This little guy is so precious. I am praying for him and for his therapy to be a blessing for him. Most of all, I am praying for a miracle from God to completely heal Joseph. He is a God of healing and I know it is not too much to ask. Praying for all of your family also, that Gods peace and comfort surround you, keeping doubt and fear from touching your hearts and minds.
Laurie in Ca.

Mel said...

Please don't forget that any time you need or want a private duty nurse, I'm ready to pack my bags and be there. I even interviewed with St. Jude 27 years ago! We're all praying in Ormond Beach!

Lynn T said...

Thanks for the update. I am so glad Jennifer and Matt are in Memphis. It sounds like their friends have already adopted you.

I keep looking at the photos from visiting you. I miss you all tons. I am praying for good sleep for you all tonight. I have boasted to everyone about how amazing you both are. You are wonderful, patient, loving parents. I am also so proud of Joseph and how well he is doing. Sweet Holly takes such great care of her big brother. I smile everytime I picture both of them taking their medicine.

Love you all,

Lynn

Martha said...

Just reading your blog for the first time. My 2-year-old son saw Joe's picture and I told him Joe was sick and we prayed for him. We will continue to pray as the Lord lays your family on our hearts. God bless!

Lisa Allen said...

We are so hopeful about his new treatment plan. We have been praying daily for you guys and will continue to do so.

Bill, Lisa, and Tripp Allen

nanna pauline said...

HELLO GILLIAN AND ALLEN BIG BAD JOE AND HOLLY BEAR!!WE JUST WANTED TO LET YOU GUYS KNOW HOW MUCH WE LOVE YOU AND WE ARE PRAYING FOR JOSEPH TO SLEEP ALL NIGHT.I CANT WAIT TO SEE THE SANTA PHOTOGRAPH HE WAS SUCH A TROOPER THAT BIG SMILE WAS PRICELESS RIPPING THE PAPER OF THE PRESENTS WAS EVEN BETTER ILL SEND MY PHOTOS TO YOU TOMORROW.I HOPE YOU AND SARAH JANE HAVE A GREAT VISIT.LOVE FROM MOM DAD AND DAVID. PSALM 21 SAYS !I RAISE MY EYES TO THE MOUNTAINS WHERE DOES MY HELP COME FROM?MY HELP COMES FROM THE LORD THE CREATOR OF HEAVEN AND EARTH.

Anonymous said...

Guess the grandma's are up late tonight. I know that we are united in prayer asking our heavenly Father to give you peace as you sleep tonight and that tomorrow will be a blessed day."The Sovereign Lord is my strength; he makes my feet like the feet of a deer, He enables me to go on the heights." Much love, Mimi

DH said...

dan hirsh here....

just found out what was going on. i'd heard a little something the day after i had worked with you in the ed at egleston.

i am definately praying for joseph and your family.

thanks for keeping us updated with this blog.

dh

Abbie said...

praying for you today....
-Abbie & Hunter

Siobhan said...

Dear Gillian,
This is Siobhan from Ireland (but in Singapore) here. I just wanted to let you know that you are all in our thoughts and prayers here and back in Dun Emer too. Joesph is an incredibly cute little man - he reminds me of Sam (and the last time I saw Sam he wasn't much older than Joe is now!). Take care of all of you and know how many people around the world are thinking of you all, and praying for you.
Lots of love
xxx

Gretchen Davis said...

Allen and Gillian - I knew you all from a long time ago in Nashville - and am still in touch with Alan's mom. Know that in Washington DC several families are praying for your sweet boy and for rest and peace for your entire family. We praise God for little Joseph. Thank you Lord also for St. Jude and the amazing work they do!

Gretchen Slease Davis,
Jeffrey and Cole