Wednesday, July 4, 2012

One *new* Day At A Time

We had the same day time nurse for the last 4 out of 5 days.  He was great!  Yesterday as he was leaving for the day, his last day before a mini vacation, I felt like telling him how thankful we were for his care and that it was so nice to meet him.  We did express a lot of gratitude, but when he said, "Have a good night and I'll be seeing you around," I nearly had a panic attack.

Yes, Esther's cancer treatment will be somewhere around a year.  I know this, but it just hasn't been real.  Our nurse knows our journey, he knows it will be long and that we'll see him again.  I just can't wrap my mind around this reality.  It feels so unreal.  Last night I went to bed, fighting tears.  I have been really just living one day at a time, but the gravity of the coming months of treatment is overwhelming.  Living one day at a time is good...pretty sure there's a Bible verse about worry that's pertinent here. I took some deep breaths and succumbed to my utter exhaustion.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

In the night Esther woke up afraid and hurting a bit.  She asked me to cuddle with her, she held me tight and I slept with her for a couple of hours.  This was a gift to my soul.  She's been a bit standoffish toward me and it's been hard.  At a time when all I want to do is hold her and try to shield her from any more pain, she hasn't wanted me all that much.

We woke up and skipped breakfast because Esther's MIBG scan was at 9am and she needed to be sedated to be still for the imaging.  This scan was to find any other hidden cancer cells and determine if her cells take up the agent that will be used in her MIBG therapy next fall.  Ten percent of the time neuroblastoma cells don't take up the radioactive dye.  The scan was a bit frustrating.  There is a nation wide shortage of a drug they use to sedate children without putting them under general anesthesia, so Esther had to go under general anesthesia.  She has not handled this well, waking up very nauseous.  I just didn't want to add another variable to make her sick.  The scan took an over an hour longer than we anticipated and ended with a difficult interaction with a nurse and Esther was hysterical when she woke up.  Because today was the 4th of July, the scan won't be read until tomorrow.  However, because the nurse made me worry, we asked the in house oncologist covering the inpatient kids take a look.  Her cells did take up the dye (that's good) and there wasn't anything majorly alarming, a couple of other areas that may have cells, but it's best left to a radiologist to read.  All in all, it's not a huge concern.  The purpose is to find every hidden cancer cell we can possibly find.  Sounds a bit Jehu-like, no?

When we got back to our room Esther ate a little bit and started her 5th day of chemo.   She did well, enjoyed a visit from Aunt Margarita and Uncle Wayne.  The chemo is doing it's job.  On Tuesday her uric acid levels were high...this is good and bad.  Good because that's evidence that the cells are dying bad, because it's hard on the kidneys.  They were able to lower the levels with some meds and extra fluids.  The bump on her head is quite a bit smaller already.  Praise God!

We packed up our hospital room.  Thank you for all of the cards.  They are so sweet and an encouragement to us and the hospital staff that entered our room.  Esther loves her new snuggley friends.

We took our giant bag of medicine and hit the road.  Esther and I headed to my parent's house and Anthony and the other four kids are at home in Fort Collins tonight.  Tomorrow Esther has a check up in the oncology clinic and a shot to help her body build new white blood cells.

Pray for all of us to stay healthy in between chemo treatments and for us to give each other a lot of grace as we learn to navigate the new reality of our life.  Pray we'd take one day at a time in our new reality and give over those anxieties.  I found myself singing a song from one of our Seeds Family Worship CDs.  They are awesome, we highly reccomend them.

"Do not be anxious about anything.  But in everything, by prayer and petition with thanksgiving submit your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7


  1. Praying with you and for you. Yes, for health and for peace as you navigate this new world. Thankfully He is still the same God. Cancer has not altered Him or His character. The one thing to cling to in the ever-shifting landscape.

  2. We love our Seeds Family Worship CDs, too. I'll be singing with you, sister. Much love from up North.

  3. Praise God that Esther is coming home! The love and laughter of your family at home are so healing. So appreciative of both of you blogs and know that God is using this to help heal you and many others.

  4. Such tough realities to take in one by one, day by day! Taking it one day at a time is about the only way when you have a sick child. Just when I thought I could start to look ahead or even predict what would come next a twist would bring us back. So glad you got some snuggle time with her. I keenly remember my daughter shutting down and shutting us out for awhile the first time we were on the 7th floor. She was 2 1/2 at the time and it was very difficult. It is hard to know what is going on in their precious little heads. Wishing you all the best and praying!

  5. I wanted to let you know that I am following your one day at a time and lifting up Esther and the family in prayer.

    2 Corinthians 1:3-5 ESV

    God of All Comfort

    3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5 For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too.

  6. "Cast your burden on the LORD, and He shall sustain you; He shall never permit the righteous to be moved." Psalm 55:22

    Praying daily for all of you.

  7. Esther sounds like a wonderful little lady with a great smile. I will truly be praying for you and your family during this time. Esthers are strong, steadfast and brave women. The two Esthers I have known (my gma and Queen Esther) seem to have demonstrated great courage and strength, even with life's painful, skewed, and uncertain future. In the thick of things, these women patiently held fast to God's providence. Trusting and resting in His good and faithful plan and STEADFAST love. I trust and pray your little Easter will do the same.

    Megan aka "Jeanne's little sister"

    I don't know how blog comments work.... posted this on on from may.... oops.... so I reposted. Sorry!

  8. We are still praying for you and your family. You are constantly on our minds. Good luck - if you end up in SF for treatment please let me know - I still have tons of friends there that would be happy to house you and the family. We love you - if there is anything that we can do, especially as this gets longer - please let us know.