Evening Update 2/4

» Posted by on Feb 5, 2012 in Updates | 19 comments

It’s been a crazy 24 hours. I was not quite prepared for what it would look like when the chemo kicked in. Yesterday afternoon Ethan’s body started going through tumor lysis syndrome. Basically, with leukemia there are a bunch of leukemic white blood cells (blasts) that are crowding out all the healthy cells. When the chemo starts working the blasts start dying and being broken down. Then the kidneys have to process them so he can pee out by-products. Ethan had such a high blast count (21,320) that his kidneys got overloaded. So his blood had way too much uric acid and phosphorus in it. That is what tumor lysis syndrome is. Left untreated it can lead to acute renal failure. When doctors started throwing around terms like ICU and dialysis, this mama just about lost her marbles. As the night progressed his calcium and hematocrit levels also dropped which added stress to his heart which was beating about 130 bpm in his sleep and 160 bpm while awake. Then around 1am he spiked a 103 fever. Simply put, his body was fighting massively hard to get rid of the dying cells and he looked terrible. I’ve honestly never felt fear the way I did that night.

They added medications to assist. We prayed. Hard. His first labs of this morning showed that his blast count had dropped from 21,320 to 224. On top of that the uric acid and phosphorus levels started declining. In short: the chemo is doing it’s job, his body is doing it’s job and we are making forward progress.

Ethan received a blood transfusion this morning as well to bump his hematocrit levels. By 11am he was up and walking, laughing, wanting to play Legos and generally looking much better. The doctors feel his condition is stable and doubt the tumor lysis syndrome will recur.

So to recap… what we are praising God for today:

  • We are watching a miracle unfold before our eyes and believe he will be healed.
  • Ethan’s kidneys handled the stress of tumor lysis syndrome.
  • His heart is doing much better now that his calcium level is rising and the transfusion boosted his hematocrit.
  • The amount of leukemic cells in his blood has rapidly decreased.
  • The swollen lymph nodes in the neck have gotten much smaller (this was one of the original symptoms that brought us here).
  • His energy level is better.
  • He has not lost any weight despite being completely restricted for food/drink on each of the three procedure days this week.
  • He has adjusted well to his “dort” and it is functioning well.

What we are praying for now:

  • Continued improvement in the kidney chemistry labs. Particularly for his creatinine to decrease, his calcium to increase and his uric acid/phosphorus to remain stable.
  • For the chemo to bring his blast count to ZERO (that does not mean the leukemic cells are all gone, they are still in the lymph and bone marrow).
  • For his platelet count and hematocrit to rise.
  • For the blood culture they took after the fever to be negative meaning there is no infection.
  • No more fever!
  • For his appetite to increase and his weight to be steady.
  • For the nausea and vomiting to stay away.

We can’t begin to express how much your prayers, notes, cards, gifts, messages and phone calls mean to us. Although we aren’t able to keep up with responding to each of you, it is playing a huge role in our ability to cope with this stress.

 

19 Comments

  1. Keep up the good work Ethan! We’re so proud of you being so strong and brave. To the whole family continue staying positive! Still praying daily! Love you all! Love, Your cousins

  2. Good job Ethan, you rock! Aidan and Scarlet made some pictures and notes for you today and we can’t wait to put them in the mail on Monday. We know you’re fighting hard and we’re all fighting with you in any way we can! To Emily and the family – we are standing with you in this fight and pray that you are steadied and have as much peace as possible during all of this. Don’t forget to take care of yourselves as well. <3

  3. You are all amazing! We put some things in the mail for you today. We are praying with you as Ethan beats ALL and as your family goes through all of the ups and downs that go with it. Thank you for the updates, please continue to let us know what we can do. God is soooo much bigger than leukemia, may He continue to strengthen and uphold you each step of the way!

  4. Praise the Lord!! What an awesome day, the prayers are still coming your way. Great job Ethan!!! (and mom an dad:))

  5. We are so proud of all of you and will continue to pray for God to watch over you.

    Ryan has a special surprise for superhero “Fastflash Ethan” that should be arriving early this week. And boy, is Ethan a superhero in our book.

    Love and great big hugs,
    Megan, Eric, Ryan and Claire

  6. What a roller coaster ride, with none of the fun. Despite never having met Ethan, I think of him the moment I wake up and he’s my last thought before I fall asleep. Praying for strength and healing for you all.

  7. Emily, I’m so saddened to read about the night that you’ve had but so impressed by the strength of your faith and your ability to look on the bright side. I’ve been thinking about you often this week and each time I think about you, I’m sending up a prayer.

  8. We’ve never even met Emily, but I am a (former) Seattle doula as well. Just want you to know that a stranger is following Ethan’s journey towards health and thinking about your family all the time. As with all things, if the positive thoughts, healing energy and prayers that are being offered up to your family during this time have any effect at all, your boy is going to be just fine. Continued strength to you all. I so look forward to your post when the doctors declare your sweet baby to be in remission.

  9. We can’t stop thinking about all of you. I am thrilled beyond words to hear that Ethan is doing better today. We continue to pray for him and all of you every day. I hope you can feel the love we are sending….

  10. I am happy to hear that Ethan is feeling better and that the chemo is working. I hope and pray for forward movement in Ethan’s treatment as well as strength for the whole family. I can not begin to imagine what you and Justin are going through. Case wants to paint Ethan a picture so we are doing that today and will send it out on monday. Love you guys. The Metzlers

  11. Thank you for providing all the updates. Love the pic of him in the Darth Vader mask. So awesome. I think about your family every day and this post made me weep with joy.

  12. Dear sweet Em,
    We are praying with your and for you (and your family). Ethan be strong and courageous! You are inspiring many with your perseverance. Blessings to you all,
    D

  13. Emily,

    Love the Darth Vader helmet…….you and your entire family our in our thoughts and prayers……..

    Much love,

    Uncle Mark

  14. Mothers Strength

    Where is my strength,
    my needed strength,
    please God will you uphold me.

    I need your strength,
    your loving strength,
    so I can be their mommy.

    Susan Michalsky

    P. S. Sending lots of love & prayers

  15. Emily & family,

    Just received your news via email and wanted to show our support! We’ve added Ethan to our prayer chain and will thank the Lord for,him and pray for healing daily.

    A good friend of mine has waged, and won!, this battle with her 4 year old. If you’d like her contact information, I’d be more than happy to get it to you. I’m sure she would have wisdom to impart now that her daughter just hit the long term maintenance goal.

    Best!
    Brea

  16. Neen & Em, Dad and I are sooo proud of you as we hear your faith is ever stronger. This is the test of your lives. Jesus knows your every fear and He is there going thru this with you. He is our awesome Savior and He holds you in the palm of his hand! There’s not an hour that goes by that we aren’t asking Christ to heal Ethan. HE IS FAITHFUL!!!! HALLELUJAH!!! All Our Love, Mom & Dad

  17. Ethan, you are not alone in this battle. You have so many people praying for you. I, too, am fighting leukemia and because I have God on my side I know that victory is at hand. Know that the effects you are experiencing will become a faint memory. The treatment is working. I am half way through chemo now and after a similar initial episode of the effects of chemo, I feel better now than I have for years. All the symptoms of the disease, fatigue, weakness, swollen glands, sweats, etc. are vanishing. God is doing a miracle in you, and is using you as an inspiration to me and to so many other people.

    Much love to you and your family.

  18. What a terrible thing for you to go through Ethan. I’m so glad to hear that all the prayers are working and you are feeling better. You are such a brave young man and I am very proud of you. I will continue to pray for you and your family. I am a close friend of your Aunt Liz. I know how proud she and your Uncle Peter are of you and how much they love you. God Bless you Ethan!

  19. Emily – I remember tumor lysis with Selah. There was an ambulance standing by to whisk her to Children’s LA for dialysis if things didn’t improve. Many praying friends were called into action and we watched her counts shrink and the ambulance was dismissed. The “prayer warriors” you’ve assembled are all armed and ready for action for Ethan and your family. Much love – Kerri

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  1. Screaming at Heaven - [...] PS: If you want to know how Ethan came through that night you can read the rest of the …

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