6/11/2008

Disappointment

The scan results from Max's CTscan and MIBG are as follows (there may be modifications of this when the formal reports are dictated):
  • The skull lesion is larger by MIBG and by CT scan, primarily pushing down on the brain rather than up out of the skull. (Apparently, the radiation Max received didn't do much but make a bald spot.)
  • There is diffuse increased uptake by MIBG scan in the entire spine, in the upper arms and shoulders, in the sacrum and pelvis, and in the lower bones of the legs (tibia & fibula). The femurs (thigh bones) appear the same as they did on the prior exam.
  • The hilar mass (this was the soft tumor in Max's chest) appears smaller by about half. This appears to be the only disease that decreased.

Obviously, the two cycles of velcade and gemzar did not produce the results we had hoped for. Max has a lot of new disease.

Drs. Roberts & Sholler took this afternoon to redirect our course of action, which will start tomorrow, Thursday. Max will start taking Etoposide, Rapamycin and Vinblastine.

His platelets continue to be low. He received yet another transfusion today. I expect he'll need a red blood transfusion Friday based on the direction those counts are taking.

We are saddened, angry, worried, pissed, perplexed... there's something out there. We need to find it.

23 comments:

Anonymous said...

I am sad and angry with you guys. Praying ever so hard for you all!!!
Love,
Bree

Randee said...

Prayer requests have been sent and many, many people are praying all the time. Remember it is always darkest before the dawn and you are so right the cure is out there and it will be found for Max and all the little NB warriors out there. Love you guys!!!

Anonymous said...

I am trying to find words, but I am sooo mad, this cancer is relentless! Your beautiful boy, Max, so strong, and so brave, having all this battling inside of him. Praying and praying for you...always in my thoughts,
Love,
Debbie

Tifani Brakke-Strane said...

Keep the faith...all of us who read your page are amazed by your strength & determination, and even moreso by Max's strength & courage. If anyone can get through this, all of you can. We are praying for Max & still hoping for a miracle.
Love, Tifani

Anonymous said...

Im sorry to read about the latest scans. Max is amazing and I am really hoping he will get a little break soon from the pain and incessant pounding of this damn disease. I loved loved loved the pictures of him at school because it showed his inner strength like nothing else could have. I hope seeing Max display that everyday gives you the extra boost when you need it to keep on keepin on. Thinking of you-
Carrie Palmer

Anonymous said...

We certainly did not get the results we wanted, needed and hoped for in these last tests. Where there is life there is hope and so there is no giving up! We are praying for that miracle and we will find it. Keep the faith and never, never, never give up!!

Love, Nana

San Diego Mom said...

Praying under the skies of Tokyo, I hope you will find continuous source of hope and courage to face these deseases that is just not going away easily. I hope Max will be happy that he is finishing his first grade and be proud of himself. I hope he can enjoy summer as many kids do. Shiho

Rebecca in MA said...

I felt sick to my stomach after reading your latest news...and pray that the next course of treatment will knock out the cancer in Max's little body. His photos on the Mashed Potatoes for Breakfast are simply amazing...giving those on the outside a realistic view into your world...you all are so brave and so inspiring. Lots of prayers being said for you tonight.

Anonymous said...

I AS ALWAYS AM KEEPING MAX AND YOUR FAMILY IN MY PRAYERS. GOD BLESS YOU ALL
JON

Vickie said...

Saddened, angry, worried, pissed, perplexed doesn't begin to cover it. I think I need a bottle of zofran to keep from vomiting all over my computer keyboard. I wish I had an innovative idea up my sleeve or in my back pocket.

VB
erinbuenger.blogspot.com

Anonymous said...

Oh, This stupid stupid disease!!!!! Just ticks me off!!! I am praying really hard that this new plan will back this damn thing off!!!!!

Always thinking about you all..

rhonda dudley

www.caringbridge.org/tn/sydneymarie

Char said...

We continue to pray for Max and for all of you as you struggle to find the answers to how to ultimately beat this cancer.

Max is a precious and incredibly strong little guy and following his story is heart wrenching. You are never far from our thoughts and always in our prayers... personally, at church and among many of our friends. Never give up is right!

Love to you all,

Char and Al Love

Shannon said...

This is not the news any of us wanted to hear...we hope your team of Doctors will work up a great new plan of action. Max is a proven fighter...we have all the faith.
love you all!

Anonymous said...

God bless you all, Melissa and family. We're praying for you daily. Tina

Anonymous said...

Fathers Day is Sunday and I have 5 children and everyone of them knows who my Hero is.
Max that day is our day for you!
Be strong Kid.

Leo

Anonymous said...

I will never, never, never give up ..and praying for Max. I am devistated for you..but miracles do happen..don't give up the gallant fight. xo Linny

Anonymous said...

We are so sorry to hear the scan results. Max is such a beautiful and amazing child with incredible parents. We will pray hard that Max responds to this new therapy.

Paul, Nina, and Angel Eden

Anonymous said...

I am sending my prayers, as always, to Max and hoping beyond hope that the new treatment will prove successful.

With love,
Holly

Anonymous said...

I'm just so sorry to read the latest scan results. I hope the new mix of chemo will be the answer to Max's cancer.

Sending you good thoughts from Northern CA,

t, Lucas Tran's mom

mooki said...

andy + melissa,
booo! not what i wanted to hear at all. i am so sorry that max and you are going through this. you know how i feel about your boy; i'm totally smitten and i want this sh*tty disease to leave him alone. what you might not realize is how many hits i've gotten on toby's blog since you listed him on your blogroll: britain, maine, florida... your family has fans all over the planet! thank you for your kind words on toby's site. strength and love to you.
mooki
toby pannone's mom

talita said...

Hey Max... lame knews huh? But be sure that a tone of people are praying for you and that this nasty thing called cancer will give you a break. Your a beautiful kid that melts our hearts with each smile... Stay strong and brave...

Love from Brasil

Talita

Brian said...

I've been thinking about you all a lot, hoping the new course of action does its trick and buys lots and lots of time until there's something that'll do the BIG trick.

Peace,

Brian

Anonymous said...

Just wanted to let you know that your family and Max are always on my mind and sincere prayers. May God's Grace to continue to be in your family's presence.Max' is a true Angel.
Love,
Blanche

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