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June 29, 2012 / Ingrid

New Tactic… Same Goal

The Ponatinib still has not arrived but now we have a better understanding of what has been going on behind the scenes.

Ponatinib is a highly sought-after chemotherapy not yet approved by the FDA, but in clinical trial use since September 2010. It has had favorable results reported in several case studies. The plan has been to obtain this medication from the manufacturer in London because doctors believe it will be active against Jesse’s T315I mutation and decrease leukemic activity. The problem is that the company producing the chemo has so many individual requests they have limited it to case study facilities. To our knowledge, as of yesterday, the University of Michigan Medical Facility is now applying to be a Ponatinib trial case study facility. 🙂

There are no promises or guarantees…but there is HOPE.

Molly, one of Jesse’s favorite Child Life gals, dedicated this poem to him…

It Couldn’t Be Done

Somebody said that it couldn’t be done,
But he with a chuckle replied
That “maybe it couldn’t,” but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

Somebody scoffed: “Oh, you’ll never do that;
At least no one ever has done it;”
But he took off his coat and he took off his hat,
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle in with a bit of a grin,
Just take off your coat and go to it;
Just start in to sing as you tackle the thing
That “cannot be done,” and you’ll do it.

from ‘The Path to Home’

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5 Comments

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  1. Leilani / Jun 29 2012 10:26 am

    Praying and believing that Jesse will soon be treated with Ponatinib! Jesus can make a way when there seems to be no way……we praise you Lord for all you are doing to get this new medicine to Jesse. We thank you for keeping Jesse strong as the process takes place. In Jesus precious name, Amen.

    Like

  2. hwschmidt / Jun 29 2012 11:56 am

    FAITH – Jesus healed the blind. Jesus healed the women of her flow of blood. Jesus raised Lazarus from the dead. Jesus expelled unclean spirits. Jesus calmed the sea, etc. NOTHING is impossible to the Lord.
    PEACE – The Lord will grant you and your family the peace, we all are praying for.
    HOPE – We all hope for the miracle, that with the guidance and the wisdom the Lord is giving the doctors and nurses, is around the next corner. The Holy Spirit is with us. LOVE – The Lord loves you, Jesse. Jesus loves you. We all love you and continue to pray for you. In Christ, hermann

    Like

  3. Elisa Carrithers / Jun 29 2012 1:19 pm

    What a wonderful poem!

    Like

  4. Linda Niederbrach / Jun 29 2012 3:26 pm

    That definitely says it all! Keep on, keeping on Jesse! Love the poem…

    Like

  5. Rebecca Hatfield / Jun 30 2012 10:15 am

    praying that the request is granted! we love you guys!!!

    Like

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