Monday, January 5, 2015

Day 45: Are we there yet?

Today is day 45 post-transplant. Ava has been in the hospital for over 6 weeks since her transplant. But as she was admitted about 8 days before her transplant, her total hospital stay has been about 7.5 weeks. It seems perfectly understandable to utter the words, "Are we there yet?" as we look to discharge.

They say that this week is a possibility for discharge. Everyone hopes it is. (But that also makes it sound unlikely that Ava would be discharged today). Many days have come and gone with talk about potential discharge in the near future, but it keeps getting pushed back. The main issue is Ava's GVHD in the gut. Her episodes of intense pain didn't seem to match the former assessment of grade 2 GVHD. So they did an MRI last week, and as Mike and Esther mentioned, they adjusted Ava's GVHD to a grade 4, being more severe (and the highest grade level). She was put on IV steroids to help her gut heal. This in turn improved her body's absorption of cyclosporine, where her levels became too high and a couple of doses were skipped as a result. She remains in the hospital while they try to level things out, help her gut to heal as well as ensure that her body is adequately absorbing the cyclosporine at appropriate levels. Ava will begin a slow taper of steroids over the next weeks, decreasing the doses in small increments over an extended period of time. Tapering the steroids might also mean that Ava begins to experience more pain again, so this will be a balancing act. We may not even be completely clear about what we're dealing with exactly and how to effectively treat/manage all of it. We are reminded (again) of the reality that we really don't have any control in our lives, as often as we may deceive ourselves into believing it. We remain in God's hands.

Admittedly, it is wearisome to be in the hospital this long, to bear with medication adjustments (in addition to the administration of so many meds), to endure the unpredictable episodes of Ava's pain and witness the effects of steroids on Ava's body and mood. Then there are the other inconveniences of having the family split in two different places and going back and forth between the hospital. Surely there are more inconveniences that come with such a hospital stay that we do not realize (like leaving your cell phone in the other place or forgetting your hospital access card at the apartment. All hypothetical, of course. Heh heh). This isn't to say that we have forgotten God's goodness. On the contrary, we recognize that Ava's transplant experience has been unexpectedly good. Has she not fared well, considering all her life-threatening allergies? Did she not engraft in two weeks? Haven't people so graciously come alongside the Lee family in more tangible ways than can be counted? Aren't your prayers being heard by our Lord? Hasn't God made His presence known in the deep valleys? Yes, yes, a thousand times yes! So it is not with ungrateful hearts that we admit this road to be wearisome. It's just a reality.

Christ Himself knows what it means to walk a weary road. He entered Jerusalem on Palm Sunday, knowing that He was beginning His ultimate walk to the cross. Though people waved palm branches at Him that day and shouted, "Hosanna!", He knew that too soon those shouts would become accusations, insults, taunts and jeers. He knows how it is to begin a hard journey.

On the night of His betrayal in the garden of Gethsemane, Christ prayed and asked if God would be willing to change His plans, to redeem mankind through another means than Jesus being crucified. He knows what it means to be given a bitter cup to drink.

Yet in the same prayer, Jesus said, "Not my will, but Yours be done." He knows what it means to surrender to the Father's will and wisdom.

After one of Jesus' own disciples betrayed Him, Jesus was beaten, given a crown of thorns, and tasked with carrying His own cross as onlookers spit and insulted Him. He remained silent, choosing not to defend Himself even as He was crucified. He knows what it means to suffer.

After His death, the temple veil was torn in two, signifying that there was no longer a need to separate God's presence in the Holy of Holies, normally accessible only by a high priest once a year. Through His death, Jesus became the High Priest through which any person can approach God's throne of grace. Three days later, Jesus rose again from the grave - death had no mastery over Him. Hallelujah! He knows what it means to be victorious.

So in these moments of weariness, we look to Christ as our example. We take encouragement from knowing that He knows what it means to be on a hard journey, and what it's like to endure difficult trials and suffering. He also know what it means to surrender to God the Father and to claim the greatest victory known to man! We pray for Ava and the Lee family to be refreshed in their souls and for the grace to surrender to God's plans and rest in His timing. We wait expectantly for the victory to come, however that might be. Not because we can will it or manipulate it, not even in our surrender. Though we "wait expectantly," that doesn't mean we are passive. Indeed, we pray boldly and earnestly. We wait expectantly even while we pray because Christ has already won the victory, and He has invited us to share in it. Praise be to God. Thank you for praying.


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