You Get to Drink From the Fire-Hose!

Yes, a firehose to the face roughly describes our day! We met for over 2 hours with a teaching nurse going through the ins and outs of caring for Esther when we get home, dealing with and watching for low blood counts, watching for signs of infection, and protecting Esther during those next 7-10 days where she'll be especially vulnerable to illness. We then picked up all of her medications that we'll take home with us, trying to keep track of which is for what issue and when to take them and for how long. We're ready to be out of here and home but it's a lot to take in and we didn't even dig into diet too much.

Esther had another great day with an increased appetite eating a good breakfast and even a little bit of dinner! The Phenergan is proving to be a key part of the recipe to helping her nausea. She got to spend some quality time with her Manga (Sam's mom) and her big brother while we were learning more about caring for her. She also got to see her Auntie Margarita, and Uncle Booey and Aunt Lexi right before bedtime. Tomorrow we'll have the MIBG test at 9am and then one more session of chemo before we should be able to take her home (to Manga's tomorrow night). The MIBG test will pinpoint the location of the neuroblastoma even more accurately and finalize whether the actual MIBG therapy will work for her.

Speaking of MIBG, we put in our preference for that treatment (likely in November) to go to Cincinnati. We've had multiple offers of places to stay there and the hospital is newer and very family friendly. It is likely the best location where we can have our kiddos very nearby and yet be rotating in helping Esther during that crazy 3-5 days prior to her radiation levels dropping. But we likely won't know for a little while still if we get our preference or get sent instead to San Fran, Ann Arbor, or Philly.

As I reflect on the past week here as we get ready to go home, I am amazed at how God is able to fill your weaknesses and how much peace he has stored up to give you. People have told us they can't imagine what we're going through right now but there are times already where it just feels normal. Stresses push on every side but even in the severity of the trial, we have felt peace and we have generally felt encouraged. Yes, there are times when it has felt like hell. But we have had plenty of laughter as well. Our older 4 have hung in there as well as can be expected and then some with their Manga and Papa and Auntie Margarita really just lavishing love on them as we get all this as figured out as we can.

As I've read the comments on our blog, on Facebook, and in emails from folks praising our faith and expressing amazement at our attitude, I've been surprised and wondered if we are being real in our blog posts. Is our faith really that solid? It doesn't feel that way much of the time. I feel God's tender hand on us at times and then at other moments I just feel overwhelmed and anxious. We've been praying but it's not like we've been anymore faithful in our relationship with Jesus, just more desperate!

Honestly, God has been so gracious throughout the past two weeks. Our support through the people and family he has given us has been such a boost. Esther has been such a gift. The side effects so far have been minimal (this is just the beginning!) and you could not ask for her to be more trusting. But God has been so faithful. There have been so many moments of panic, loneliness, hurt, worry, anger, discouragement, confusion, and that sunken feeling in the pit of your stomach, but every single time, I have felt God restore his peace to us very quickly. God has made it difficult to stay discouraged for too long.

And all of you have also made it difficult to stay too discouraged for very long as well. Thank you.

 

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