"We aren't going to get four or five more chances to get this right. We have to get him to remission now."
Sam's body has had enough of the treatments they've used so far. No adverse side effects that they can see (like heart issues, the primary concern) but it is not worth the risk.
And so we need a new course. A new plan. A new way.
This won't cure our little boy.
This is a bridge. We need a bridge to get him to remission to get to transplant. Transplant is the curative treatment. This is just a bridge.
A long and very narrow bridge.
This bridge has a lot of names like clofarabine and vinorelbine and topotecan and thiotepa and dexamethasone. It's a consonant-and-vowel-heavy bridge. It has side effects. Many many side effects. Or none. Who knows....they don't. We don't. Only jumping in and doing it will tell us. They continue to be confident and positive and hopeful.
We can't NOT do it. So we move forward. We proceed. We sign the consent forms and ask questions and pray. A lot of that.
It all starts on Monday.
Kol ha-olam kulo, gesher tzar me'od. And I can't imagine how one could not be afraid. Maybe the ikkar is just to keep putting one foot in front of the other, knowing that you are loved, even when there is fear.
ReplyDeleteShabbat shalom.
Love and prayers from us, as always.
ReplyDeleteWishing you all so much love and many prayers. --Jill
ReplyDeleteAlready healed. Always loved. Always in our prayers.
ReplyDeletexo,
-m
In my prayers, and the prayers of my children.
ReplyDeleteSending prayers and Light to shine in the darkness.
ReplyDeleteLove and prayers are coming your way from Vanessa (aka "Nessy") Hood and myself, Vanessa's mom, Judy Stock. We learned about Sam's and your family's journey through Janet Johnson. Nessy was a Team in Training participant and met Janet while living in the St. Louis area. Janet ran the Boston Marathon in honor of Sam and Vanessa.
ReplyDeleteThe Lord prompted Nessy and her husband to move back home to Wisconsin to be closer to family. Within 6 months of moving back, Vanessa was diagnosed with PH+ ALL in October 2012. She had a BMT on February 1st, 2013 and is home recovering and doing well. Our hearts are with Sam and with your whole family, as we know and understand how this touches not just the patient, but all of the loved ones/family as well.
God speed to you all,
Judy
Praying for a Refuah Shleimah and singing the narrow bridge song.
ReplyDeletePraying for Superman Sam and hoping that this narrow bridge leads to a wider, easier path in the future. May he come through this journey with no side effects, may the bridge lead him to safety, and may he have a complete refuah shleimah.
ReplyDelete"We can't NOT do it. So we move forward. We proceed. We sign the consent forms and ask questions and pray. A lot of that." Yeah. A lot of that. Lots of pray-ers are praying with you.
ReplyDeleteSending all our love and strong, healing thoughts from Israel.
ReplyDeletexox
We will all continue to be positive, confident and hopeful. We keep praying.
ReplyDelete