Make Something Beautiful

September 5th, 2011 by Stephen Chance

posted on CarePages September 3, 2011

Patrick and I flew to Philly on Wednesday, met with Dr. Maris, and proceeded with MIBG treatment #4. No child has ever had more than 5. Patrick’s skeleton and bone marrow host billions of neuroblastoma cells that are now being carpet bombed by trojan horse radiation. We know this has worked very well for him before to knock down disease with the hope that we could transition to antibody therapy or other trials that have simply not panned out. So we try again. We hope and fervently pray that MIBG will work yet again and that, this time, the only feasible trial will open in the nick of time. The problem is that Patrick’s platelets are too low for almost all potentially effective therapies. Only the hu14.18 trial, with its liberal platelet requirement of 20,000 (transfusions OK with known marrow disease) will do. We hope that it opens and that Patrick’s disease burden is low enough for it to actually work. We are about to watch a war wage between heavily treated stem cells trying to make platelets and neuroblastoma trying to take over for good. The odds are heavily in favor of neuroblastoma. I always loved underdogs.

Erin and I literally tag teamed with a kiss at the main entrance of CHOP yesterday. She got out of the taxi, kissed me, and I got in. When I arrived home Madison was ready to come to the mountains, so here we are. We were able to make the surprise celebration of Jack Prestia’s 50th birthday as planned. Sort of. We are missing a few key members of the clan, but I am glad that Madison and I made it. Patrick’s radiation level was low enough to be discharged today. He and Erin are boarding now and headed home. They will cuddle up with the Dawgs and an adult lemonade and join us here tomorrow.

The next few weeks are critically important. Either the MIBG knocks back the NB yet again, or we will begin to see pain. He will get his stem cells back on September 12 and they will need to engraft in a very hostile environment. He will be transfusion dependent for blood and platelets. We are so near the precipice that Dr. Maris wants us both to be in Philadelphia with Patrick on September 12 because the course will show itself by then and he wants to have “the talk.” Kathy, The counselor at the girls’ school, thinks we should go ahead and tell Madison that Patrick will likely pass within a very few months. That will be the toughest thing Erin or I have ever done bar none, but it must be done so that she can prepare to say goodbye in her way. The thought of taking that pure, sensitive, happy soul and infusing it with such pain breaks my heart. I have wept about it daily. Then comes Anna – but much later in the game. She can’t be expected to keep the information from Patrick, and there is no reason he needs to ever know until Jesus wraps his arms around him for a glorious welcome.

We are planning a day of prayer on September 12. Details will follow. We will pray for no pain, for Patrick’s stem cells to engraft while neuroblastoma cells remain in check, and for the hu14.18 trial to open so that Patrick can continue to blaze trails and warm us with his smiles. Most of all, we will pray for our daughters. Please pray that we press on through grief to a new kind of joy. Please pray that we, especially Madison and Anna, assimilate pain and use it to make something beautiful with our lives. Please pray that you make something beautiful with your life too. If we all do that then Patrick’s life, albeit brief, will not be lost. SRC

PS Go you Hairy Dawgs!

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12 Responses to “Make Something Beautiful”

  1. September 07, 2011 at 7:35 am, Carol Grantham said:

    You all, especially Patrick, continue to be in our prayers. We are confident our Father God has this precious child in His mighty hands.
    With love and great expectation, Carol and Don

    Reply

  2. September 07, 2011 at 7:42 am, Kriston Chandler said:

    Many heartfelt prayers for this trail to open! Praying for peace. Praying to understand why.

    Reply

  3. September 07, 2011 at 8:41 am, Cindy said:

    We will pray for you all particulalry on the 12th. I pray today for God’s mighty hands to wrap you all gently in his strength and peace.
    With Love,
    The Meadows

    Reply

  4. September 07, 2011 at 8:54 am, ML Hagler said:

    On our knees. This little fellow has brought so many of us together. He is in God’s hands no matter what. Love ML

    Reply

  5. September 07, 2011 at 9:00 am, ansley threlkeld said:

    xoxo
    praying without ceasing. pressing on with you in every way. love yall so much. The Threlkelds

    Reply

  6. September 07, 2011 at 6:25 pm, Kym Smiley said:

    You are in our thoughts and prayers daily. We pray for the best and hope you know that you have the love behind you to get through anything. Your family has shown incredible strength, which is a miracle in and of itself. Much love, Kym, Brian, Katelynn, Lauren & Trenton.

    Reply

  7. September 08, 2011 at 7:48 am, Gigi McCutcheon said:

    I will be praying strongly for you all on Sept. 12th. I pray for Patrick every day. Borrowing Brennan’s words, I send you “Hopefullness and Love.” GEMc

    Reply

  8. September 08, 2011 at 8:48 am, Martha Simkins Davis said:

    We will all be praying for you and yours. May you feel His hand in yours at all times so that you will be comforted by the knowledge that the road home is solidly beneath your feet. A tremendous amount of love and grace surrounds you. You are pouring it out to all of us as well and the beauty of that love smooths out the edges of the pain. Peace be with you. Sending love…

    Reply

  9. September 11, 2011 at 6:15 am, Cam and Marshall Rogers Albemarle NC said:

    Go Patrick! We are thinking about you and your family today and everyday. I’m even going to have a candy bar in your honor today!
    We have two basset hound pups and they are sleeping at my feet right now and I’m sure they’re asking God to take very good care of you. We can’t wait to meet you! Love, Cam Rogers (Big Mama)

    Reply

  10. September 11, 2011 at 12:01 pm, Kourtney Forster said:

    May peace be with you and your family. Saying extra special prayers for strength and clarity.

    Reply

  11. September 12, 2011 at 7:17 am, Jay and Maryanna thornton said:

    Our family continues to pray for all of you…especially today. The Lord is FOR Patrick and will never leave him alone for one second.

    Reply

  12. September 12, 2011 at 10:20 am, Melissa Brady said:

    The following prayer was on a card given out in my church this past weekend during our 9/11 memorial services. The words “press on” jumped out at me of course. I find it an encouraging prayer to help us through our earthly struggles as we keep life eternal with God as our ultimate goal. At the same time, we pray, please Jesus, for MIBG to have victory over NB so Patrick can enjoy more time in this life on earth. Also continuing to pray for strength and peace for all the Chances, their family and friends.
    “Heavenly Father, enable us to press on toward Jesus Christ, so that, after our earthly course is run, He may reunite us with those we love, when every tear will be wiped away. We ask through Christ our Lord, Amen.”

    Reply

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