Praise God for more quiet days.  Jeremy continues to be fever free and eat well.  He had a weigh-in yesterday and he is maintaining his body weight, which is great.  His sleep has been poor lately.  Last night it took 2 hours for him to fall asleep because he kept playing with the bed rails and buttons to control the bed and every little noise made him spring right back up again.  Thank you all for your prayers for patience and understanding.

Praise God, Jeremy and Matthew are great together. Jeremy continues to be very protective of his little brother. No one can approach Matty’s bassinet before asking Jeremy first. If they do, they get a very stern, “Stop! Don’t touch him!” We try to teach Jeremy to use a calmer, softer voice, but he gets very excited with any movement towards Matty. They both sleep through each other’s crying. Last night, Jeremy was throwing a tantrum and screaming, but Matty didn’t even squirm. Matty doesn’t like getting his diaper changed and cries loudly when his bottom is exposed, but Jeremy slept right through the diaper changes and nighttime feedings.

The nurses informed us yesterday that Jeremy can be unhooked from his IV pole from 1pm – 9pm, in between his IV antibiotics. The policy here is line access only once per day, not including labs, and Jeremy falls into that policy. The concern about too much line access is possible risk of infection. But, once per day is deemed ok and we take the opportunities to get Jeremy off his IV pole so he can have some freedom. Today, we went to the dry erase board and I asked him to write his name for me. I spelled it as he wrote the letters. I wrote the “J,” but he did the rest. Being off the lines, he will almost always want to sleep on the other side of the bed, just because he can. Alice, Jeremy, and Matty all took a nap at the same time today.  I had a cup of coffee this morning and I guess that was enough to keep me awake to write the majority of this post.

Praise God, it also looks like Jeremy is starting to trend upward. His counts today are holding stable and he hasn’t needed any transfusions for the last three days. We’re excited about his counts going up, as that means he might be able to go home for a little bit. But that also means we’re approaching bone marrow transplant, with no match officially found.

We received more news about the 9/10 donor.  Turns out, he/she is preliminarily a 9/10.  I think doctors were so excited that they took the preliminary results and ran with it. The lab needs to do further typing before it will officially be 9/10. This means that it is possible that this donor may not be a suitable match.  We will know officially on Friday of this week or early next week.

We continue to lift this to the Lord and submit in obedience to what He has in store for this situation, for Jeremy.  Not a day goes by that we don’t confess our worries, anxieties, and fears to God.  He fills us with the hope and peace that can only come from Him, but we do have our tearful moments because of what Jeremy has been through, how much he’s had to endure at the tender age of 2.  Still, we know that God is not distant, that in Christ, He is near and His Holy Spirit dwells in us.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” (2 Corinthians: 3-4)

Praise God:

  • for Him, the comfort that can only come from Him
  • for His gift of the Holy Spirit
  • Jeremy remains fever free
  • Jeremy continues to eat well
  • Jeremy has great energy levels
  • Jeremy’s counts are recovering
  • Jeremy gets to be unhooked from his IV pole for some of the day
  • the boys sleep through each other’s crying, the noises throughout the night from nurses coming in and out, and the machines pumping on the IV pole
  • that Alice continues to recover well postpartum

Please continue to pray (new/updated items in bold):

  • that God would continue to use this situation for His glory
  • that we would be obedient to God’s plans for this situation
  • that we would continue to cast our worries and fears on the Lord, that we would fix our eyes on Him
  • that we would continue to be reminded of God’s greatness and provision, that we would wait on Him, and that we would not allow fear to creep in
  • that we would rejoice in the moments that God gives us
  • that God would provide full and complete healing and total health for Jeremy
  • that God would provide with the whole process of finding a bone marrow match, the risks of transplant, and the anxiety of it achieving long-term remission for Jeremy
  • that the potential 9/10 donor would indeed be 9/10
  • that the potential 9/10 donor would be a suitable donor for Jeremy, in perfect health and free of infectious diseases (hep B, etc)
  • that the potential 9/10 donor would follow through with donation
  • that word would continue to get out about the need for a perfect bone marrow match and that one would be found for Jeremy
  • that Jeremy would not experience any more stomach pain
  • that Jeremy would not experience any discomfort when using the potty
  • that Jeremy will not encounter any life threatening side effects during this round of chemo
  • that Jeremy would not have any brain, liver, lung, kidney, pancreatic, heart, or any other type of organ damage as a result of the chemo
  • that God would continue to protect Jeremy’s heart from the lasting effects of the medication (mitoxantrone) from the last round
  • that God would protect Jeremy from any bacterial, yeast, fungal, or viral infections
  • that God would guide the doctors in the decisions being made regarding Jeremy’s central line
  • that Jeremy would not encounter any more fevers for the duration of this round
  • that God would protect Jeremy’s kidneys and livers as they process the antibiotics and residual chemotherapies
  • that Jeremy would sleep well during this round of treatment
  • that Jeremy would continue to eat well during this round of treatment
  • that Alice and I would not get sick in order to care for our family
  • for adjustment for all of us as we learn to care for one another in the hospital setting
  • that Alice would recover quickly from baby brother’s birth
  • that baby brother would nurse easily and sleep well
  • for our neighbors who are also enduring trials of their own
  • for our parents – that they would have rest and place their trust in Jesus and receive His comfort
  • that God would give us wisdom in teaching Jeremy in the hospital environment
  • that we would be witnesses of God’s love and grace to our neighbors and the medical staff