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Staying in the Boat


Posted 11 hours ago

We just finished talking with surgery again tonight. Surgery is planned for Thursday, Jan 13th.

Friday’s scans disappointedly showed that Riley’s tumors have grown quickly and significantly, but no new spots have appeared, which is encouraging considering Riley‘s past history of aggressive and spreading disease without treatment. So without new disease we are hopeful the experimental therapy has helped.

We have had difficult discussions with our doctors, those in NY, each other, and Riley.

Medically we are walking down unknown territory. Unproven and unpredictable. Honestly, if we were giving medical advice to our patients, we may not be able to see the potential for benefit. But we don’t see any other option and we don’t see Riley has anything to lose. Plus we have stepped into the boat of immunotherapy and we don’t feel like we can jump out of the boat just because it is not looking exactly as we had hoped. We are praying land is just beyond the horizon. Of course, with surgery we have risk for complications, but every time Riley had chemo in the past she had risk, transplant was very risky, and if we do nothing it will be only a matter of time before she has the ultimate complication from her disease.

How did we get here? A friend forwarded a devotional to us this week which helped. It described a line of faith and the difficulty of stepping over the line to reach your goal. Only faith has carried us this far, so we keep stepping and we keep believing in Him and in His healing power and healing Will.

Our current prayer needs are for strength and wisdom, peace and healing. We pray the FDA will approve more treatments (we should hear their answer by Wednesday afternoon or Thursday morning - if further treatments are not approved, surgery would provide no long term benefit). Our prayers for surgery include the safe removal of the tumors in the right lung without evidence of spread of tumor to the chest wall, avoidance of infection, control of pain, and quick recovery. Speedy recovery so we can travel to NY for another infusion of immunotherapy cells. No new spots to develop and for the spot on the left side to grow slowly, stay stable or shrink until it can be removed in a month after her recovery from this surgery.

We love the support we have been given. Faithful believers who support us as we step “over the faith line.” We hear of the miracles granted to those in the Bible, but we don’t know how Abraham felt while waiting for His promises to be shown. At an old age without children, he must have thought himself a little crazy. He must have wondered how his descendents would be more numerous then the stars in the sky. So too, do we believe and yet we can only wonder how it will come to pass.

Riley is feeling good. She says “okay” to surgery now and again in a month if needed. She won’t admit any concern and doesn’t act as if she has any. She is at peace, so we also will rest, trusting in His plan.

Staying in the boat trusting He will keep us safe and believing land is just beyond the horizon,

Kirk & Kelly

P.S. We don’t usually ask for such help, but Riley wants to go snow skiing for her first time. We would love to have the chance and think we could “squeeze” it in in about 3 weeks. If anyone has any advice for a good place to go with 4 kids that have never skied (or a place to stay available the week of Feb 6th) please contact us.