The bilirubin blues

If you remember last week, Bennett’s bilirubin count hit its all-time low of .9! But this week we’ve had the bilirubin blues because it’s continued to increase…all the way up to 2.4 today. Boo!

The doctor says the increase could be caused by a few different things…not getting all of his medicine in each day that helps his liver (it’s an oral medicine and we all know how well Bennett does with that!), the chemo the last few Mondays, radiation a few weeks ago or the nutrition he has going through his IV. Many of these can make the liver grumpy. So we need to get that count back down!

But some good news we got this week…the mutation of the cells that caused the tumor is only in Bennett’s liver and not in all of the cells in his body. This means that it isn’t genetic and we don’t need to be concerned about Davis and Reide having the mutation as well. It also means there is less of a chance for the mutation to take place randomly in other parts of Bennett’s body. Thank you Jesus! This mama needed that sigh of relief.

Now the rest of the week should be pretty low key for us. Bennett will have a photo shoot tomorrow with St. Jude for them to use his sweet face in their fundraising. We have all loved being together as a family. It never fails that I turn around in the car and find Davis and Bennett holding hands. Love how those boys love each other! Davis and Reide have been adjusting well to Memphis and visiting the hospital every day. St. Jude does an amazing job of providing activities for the kids. Just today there was a painting party!

Now here are a few prayer requests for the rest of the week. And don’t forget that you can get quick prayer updates on our #Pray4BabyBennett Facebook group. And for those of you not on Facebook, we are working hard today to get those Facebook posts on the right side of the website too so keep checking the homepage for updates. Prayer moves mountains!!

  • Pray that Bennett’s liver becomes even stronger and healthier. We want it to be able to take all that we throw at it…chemo, radiation, medicine, nutrition and more. A strong and healthy liver will have a low bilirubin too:)
  • Pray for Dr. Sara and her team as they continue to listen to Bennett’s body and choose the best course of treatment for him.
  • Pray for his sleep. We’ve had a few rough nights this week. I just pray peace and rest over him in the night so his body is ready to fight another day.
  • Pray for next week as Ben is back in Lafayette and the kids are here with me. Thankfully I have some people coming in to help while he is away.

I leave you with this quote that I read in one of my devotionals this week…

Our burdens are our wings; on them we soar to higher realms of grace; Without them we must ever roam on plains of undeveloped faith, for faith grows but by exercise in circumstance impossible. O paradox of Heaven. The load we think will crush was sent to lift us up to God! Then, soul of mine, climb up! Nothing can ever be crush, save what is underneath the weight. How may we climb! By what ascent will we crest the critical cares of life! Within His word is found the key which opens His secret stairs; alone with Christ, secluded there, we mount our loads, and rest in Him. (Streams in the Desert)

O bilirubin blues, you only last a moment because we will continue to climb up and find rest in Christ alone! And may the load you carry today only take you deeper in faith too.

15 Comments

  1. My friend Matt Ryan is director of fundraising and marketing for St Jude. I notified him through Facebook that y’all are there if you run across each other. We continue to pray for Bennett!

  2. From our devotional today: Isaiah 40:27-31; 41:10 “Without Power” HE gives power to the weak, and to those who have no might He increases strength- Isaiah 40:29. Like a storm of nature, a personal tragedy can often leave us feeling powerless and in the dark. During such times, God’s Word assures us of His help assures us of His help. At our lowest point, drained of emotional resources, we can place our hope in the Lord and find our strength in Him He promises us that, for each new day, “Those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint” (Isa. 40:31)
    God is our spiritual power source in every storm of life.

    O God, our help in ages past,
    Our hope for years to come,
    Our shelter from the stormy blast,
    And our eternal home! – Watts
    It takes the storm to prove the real shelter.

    All our love and prayers for Bennett’s healing we send to you and your dear family.

  3. Megan, for Bennett’s rest you could put a drop of peace and calm in your hands, rub together and then apply to his feet. That should help.God bless

  4. Just seeing him smiling is better than sunshine. Thanks so much for keeping us in touch with all of the details so that we can pray for these specific needs. He is an angel.

  5. Thank you for keeping us updated. We send love hugs and prayers!
    God is our awesome healer. He never waste a hurt, can you imagine how many people are going to The Lord in prayer ,some people never prayed everyday before. Your sweet baby stole their hearts and then they gave theirs to God.
    That’s amazing !
    Kisses for the cutie pie!!
    Love y’all , Juanita

  6. I don’t know If someone telling you guys that your struggles can encourage others, but I do know the Bible talks about the fellowship of His sufferings in Phil 3:10 and while one could posit this context does not apply, I would say it does. How we deal with strife in THIS life is a testament to how we see the next. My prayer is that God will always give you all the strength to be faithful, and overcome every challenge thrown your way.

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