Home, and a week's delay

In clinic today she said "I don't fweel so well."

We did make it home on Saturday evening. I posted it on facebook, but realized lots of people praying for Esther aren't facebook friends with me...sorry!

It was a bit of bumpy ride out of the PICU with some out of my comfort zone advocating and working out a diagnosis of a UTI...which I knew would happen because of the Foley bag. Esther is on antibiotics for the UTI and it will hopefully clear quickly, please pray for that. It's her weak immune system's first need to fight infection and there are lots of things that could go wrong.

Because of this infection and some low levels amongst her electrolytes, her treatment will be delayed a week. This is a four week cycle, the first week she is inpatient, the next two she takes some other medicines at home, and the fourth week has some preparation for the next inpatient cycle. Since we can't start the at home medicine this week, everything is backed up a week.

As Anthony and I were talking about it, he was commenting that now her last inpatient treatment would be the first week of July rather than the last week of June. She will still have two months of treatment following that last inpatient stay, but there is an end in site. I think we've been focusing on that end a little too much and that has made the days in between very, very long.

How often in life are we living in the future? I think goals and end of treatment dates are things to look forward to or motivate us, but our hope can not be fulfilled by an uncertain future. The boundaries for our days right now include a longer treatment. These verses came to mind....

The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. Psalm 16:5-6

You hem me in, behind and before, and lay your hand upon me. Psalm 139:5

God holds our lot. When I am trusting and hoping in a date on the calendar, I am not pursuing my chosen portion. I quickly forget that even in the midst of a difficult road, the lines God has given me fall in pleasant places, and that His hemlines feel constraining, but His love unbound by anything on this earth.

The only thing that is real today is that God is enough for today.

Some things to pray for:

• Esther to heal and fight this urinary tract infection
• The other four kids have colds, we've been having them wear masks and have kept Esther in her room away from them, please pray she doesn't get it.
• For us to find our peace in that Jesus has given us these hemlines and that we would rest in them.

• Esther is so, so weary. These last two rounds of antibody therapy have been much harder than we expected and aside from her transplant, harder than any round of chemo. Pray for her endurance, for her eat and drink, for her to laugh and smile. Pray for us to encourage her and that she would believe that encouragement. The other day she said she wasn't brave because she cried when we had to de-access her port. She is so brave, far braver than I.

 

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