A retroactive update.

Praise God for His continued provision.  Jeremy hit a fever early yesterday morning.  Blood cultures were taken, but we won’t know if anything grew out of it yet.  Even through the fever, Jeremy was very much himself, eating, playing, and showing interest in keeping busy.  Praise God, by this morning, the fever broke.

Praise God, the lumbar puncture went without incident.  Preliminary results show no leukemia cells in his cerebral spinal fluid.  Final results will be in later.

The game plan is still to get him to remission and hopefully a 2nd transplant.  Doctors have prescribed decitabine and vorinostat.  It’s been shown to be effective in relapsed adults, but there isn’t much data about how effective it is in children.  We may be able to do this on an outpatient basis, which means there’s a good chance that we can be out of here by this weekend.  The rest of his treatment would be in the clinic.

The doctors are relaxing the rules a bit regarding Jeremy’s isolation.  I’m not sure if that’s a good thing or a bad thing.  It’s almost as if they want to give Jeremy the freedom to do what he wants to do because there’s a high probability that he may not be able to later.  And even though that’s not the way I want to look at things, I’m glad the rules are relaxing because we really do want to take Jeremy to do the things he’s been wanting to do.  All the things that he wanted to do “one day.”

Lately, Jeremy hasn’t been praying for his own healing.  He used to pray this at every opportunity, but lately he hasn’t.  We asked him why and he replied, “No, I don’t want to.”  It saddened us, to say the least.  We don’t know exactly what is going on inside his head, if there is any bitterness because of being back in the hospital, or knowing that something isn’t right because his parents were crying uncontrollably in front of him a few days ago.  At the same time, he knows that his heart has been cleansed by Christ and he still sings songs of praise.  We pray that Jeremy will have joy in Christ, despite the difficult times he’s had and what lies ahead.

It’s been a rough few days.  While Jeremy is still very much himself right now, we know that there is a disease inside of him that is agressive and we won’t know if it will let up with the new medications.  The odds are stacked against us.  We are still fervently praying, asking the Lord to continue to show His mercy to Jeremy by freeing him from this disease.  While there is peace and comfort knowing that God’s will and His plan for Jeremy is far greater than anything we could plan for him, there is still much sadness to know that losing Jeremy, even just temporarily, is a possible outcome.

We’re enjoying every moment with Jeremy, even the moments in the hospital.  Alice is continuing the homeschooling.  Jeremy really loves schooltime.  He’s very teachable and very bright, so he catches on pretty quickly.  We play and do silly things, tell stories, sing songs, watch movies.  Jeremy gives us random hugs, kisses, and I love you’s.  He’s still protective of his little brother when the nurses and doctors get too close, putting on his Hulk face and making a low growl to voice his displeasure without yelling.  Jeremy loves Matty, and vice versa.  When they’re close together, Jeremy loves to hold Matty’s hand and give him hugs and kisses.  Matty will reach out, too, smile and make approving baby noises.  We love our boys.

“The Lord is my light and my salvation—
whom shall I fear?
The Lord is the stronghold of my life—
of whom shall I be afraid?” (Psalm 27:1)

Praise God:

  • for His goodness and faithfulness
  • for His protection and mercy over Jeremy
  • Jeremy was himself through his fever
  • the fever broke in 24 hours
  • preliminary results from the LP show no leukemia cells in Jeremy’s CSF

Please pray:

  • that God would receive all the honor, glory, and praise for this trial
  • that we would fix our eyes on Him
  • for spiritual protection from the enemy’s lies
  • that our families would have the Lord’s peace and comfort as we all wrestle with the recent news of Jeremy’s current situation
  • that God would miraculously heal Jeremy from this aggressive disease
  • that God would give us wisdom in making the best decisions for Jeremy’s care and treatment
  • that the new treatment would be effective in treating the relapsed leukemia
  • that God would strengthen and protect every inch of Jeremy’s body – his brain, heart, lungs, liver, kidneys, pancreas – from the side effects of the new treatment
  • that God would protect Jeremy from any dangerous or fatal infections during his treatment
  • that God would protect Jeremy from mucousitis, stomach issues, or any other painful side effects from the chemotherapy
  • that Jeremy would be able to eat and play through the upcoming chemotherapy
  • that God would give the doctors wisdom in treating Jeremy and recommending next steps
  • for our protection (Alice, Matty, and myself), that we would not be exposed to any of the medications being used in this next treatment phase
  • for the lumbar puncture procedure, that it would be free of any complications and that we would see favorable results, leukemia free cerebral spinal fluid