Praise God, Jeremy continues to be fever free.  He also had a little bit of food today and took a few sips of apple juice and milk.  It may not seem like much, but taking anything by mouth right now is a significant accomplishment.

Praise God, Jeremy’s numbers continue to trend up.  His ANC has been > 0.5 for three consecutive days, which means we are able to eat in the room with him.  A simple thing, but we were praising God and having a high-five party because we were overjoyed that we could eat together again.

Jeremy’s belly is still quite distended and it causes him a lot of discomfort.  He’s been asking for medicine in his tubes (pain meds) for it.  His breathing has also gotten a bit more rapid.  The doctors came in today and told us that it’s very likely VOD.  He meets two of the three clinical criteria – weight gain and enlarged liver.  The third criteria, high liver numbers, can be delayed in presenting itself.  In the mild case, the liver can heal on it’s own and the condition will reverse itself.  In the moderate case, Jeremy will need another medication, which is on trial, called defibrotide.  In the severe case, they will still start defibrotide, but prognosis is poor.

At this point we are still waiting it out.  Jeremy’s liver numbers are still good, as are his kidneys.  He dropped in weight a little bit since this all started – hopefully water weight – which is a good thing.  His blood pressure has been elevated the last two days and his temperature has fluctuated today, going as high at 38.2 C.  He was feeling different throughout different times of the day.  At times he was singing (Come Thou Fount of Every Blessing, Baby Mine, Jingle Bells) and at other times he was crying from the discomfort.  Praise God, toward the evening he was complaining less about the belly pain, without the help of pain medication.

We’re completely heartbroken at what this could mean for Jeremy.  He’s so worn down, having been through so much already, with more challenges ahead.  We were deeply saddened with the news of VOD.  Still, we are comforted by the Lord’s presence through this, knowing that His love and grace sustain us all.

“What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies.  Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us.  Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” (Romans 8: 31-35, 37-39)

Praise God:

  • for Him, for Christ and His inseparable love
  • Jeremy remains fever free
  • Jeremy is eating a little more each day
  • Jeremy’s liver and kidney numbers continue to look good
  • Jeremy was feeling better toward the evening
  • Jeremy counts continue to trend upward

Please pray:

  • 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 protect Jeremy from any scrapes or bumps
  • that Alice and I would not get sick in order to care for our family
  • that Matty would nurse easily and sleep well
  • that God would give us wisdom in teaching Jeremy in the hospital environment
  • that Jeremy would maintain the desire to pray
  • that God would give us the proper balance in caring for Jeremy and Matty
  • that we would adjust well to the new challenges of being in the BMT unit, with all it’s necessary rules and regulations

Please pray for the conditioning chemo regimen:

  • that it would be effective in destroying any lingering cancer cells
  • that pain caused by the mucousitis would subside
  • that Jeremy’s spirits would improve, that he would have the desire to play
  • that Jeremy would regain his confidence in eating when he is able to
  • that Jeremy’s mucousitis would not worsen and would not reach his diaper area
  • that Jeremy would not have any more bloody noses
  • that Jeremy’s taste buds would recover quickly
  • 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 and antibiotics
  • that Jeremy would not encounter any c-diff as a result of the antibiotics
  • that Jeremy’s liver numbers would continue to stabilize and the chemotherapies would not cause additional damage to his liver
  • that Jeremy would not need to be admitted to the PICU at any point during the chemo regimen or bone marrow transplant
  • that Alice, Matthew, and myself would not be harmed by the chemo we might come in contact with when changing Jeremy’s diapers
  • that the chemotherapy Alice and I were exposed to in Jeremy’s vomit would not cause any harm
  • that Jeremy would not be nauseated and would not have any more vomiting episodes
  • that Jeremy’s central line would not be compromised and the bleeding we saw was not a result of anything harmful or dangerous
  • that Jeremy would not encounter any more fevers
  • that the CMV would be eliminated from his system, that the CMV would not infect Jeremy’s lungs or cause any issues with his eyes
  • that Jeremy would not experience additional pain or tingling sensations in his hands
  • that Jeremy would not encounter VOD, that whatever is ailing Jeremy’s liver would heal on it’s own
  • that the swelling in Jeremy’s liver would subside quickly without additional medications
  • that Jeremy would pass the extra fluid and would not retain any more fluid

Please pray for the bone marrow transplant:

  • that the donor cells would engraft, that Jeremy’s body would not reject the transplant
  • that Jeremy would not encounter any graft vs. host disease, acute or chronic, especially anything severe or fatal
  • that God would protect Jeremy’s skin, kidneys, liver, stomach, and intestines from both the donor cells and the medications used to treat and prevent gvhd
  • that the mismatched blood type would not cause any issues for Jeremy
  • that Jeremy would not experience any severe or dangerous infections from the transplant
  • that the prophylactic antibiotics would be effective in treating the bacterium in the donor marrow

Please pray for our family and neighbors:

  • for our neighbors who are also enduring trials of their own, that they would find their comfort in Christ
  • for our parents – that they would have rest and place their trust in Jesus and receive His comfort
  • that we would be witnesses of God’s love and grace to our neighbors and the medical staff