Praise God, today was quiet.

The doctors came in this morning and told us that the blood cultures from day 0 continue to be negative.  The infectious disease doctors came by yesterday (they do for every patient that hits a fever, plus they were made aware of the bacteria found in the donor marrow) and told us that they’ll continue the vanco on a 5 day course.  They peeled off the other antibiotics though, since the vanco is the “big gun.”

The doctors also told us that they love to see that Jeremy is still eating and playing.  We were told that they expect him to feel progressively worse throughout the next 7 days because of the conditioning chemo, the main cause being mucousitis.  We are blessed to be able to say that in the past, Jeremy encountered very mild mucousitis in the first round of chemo and absolutely none in the second and third.  One of our transplant doctors was amazed by this and we can only credit it to God’s mercy.  We are praying that Jeremy will continue to be mucousitis free for the rest of the final round of treatment.

We were also told that Jeremy’s liver numbers are looking good and the medication he is receiving to prevent graft vs. host disease is at therapeutic levels.

The chemo appears to have done it’s job and Jeremy is currently neutropenic.  This time is always touch and go as he is highly susceptible to infection.  We are praying that Jeremy will not encounter any bacterial, fungal, viral, or yeast infections.

Now that the marrow is in, we wait.  The next big milestone (of many) is engraftment, when the transplanted stem cells start to produce white cells, red cells, and platelets.  Engraftment, according to marrow.org, occurs when the ANC is above 500 for three consecutive days and platelet count is above 20,000.  For reference, normal ranges are 1500 for ANC and 150,000 for platelets.

Day 0 and beyond will be a long road.  The first +100 days are a critical time, as he will be monitored for signs of acute graft versus host disease.  Past that he will continue to be monitored closely for chronic graft versus host disease for at least the next two years and then less closely for the rest of his life.

Each day is a day of praise as we see and experience God carrying Jeremy through this journey.  Thank you all for your commitment to prayer.  Day 0 was made easier knowing that Jeremy was and continues to be covered in prayer.  The comfort we felt that day far surpassed any fear we’ve felt since Jeremy’s diagnosis.  Praise God for His comfort.

It’s been a while since pictures or videos have been posted.  I’ve added a photo from Day 0 to the Day 0 post.  This is a video from today.  Jeremy had a visit from Child Life Services to encourage him to get down on the floor to use his legs.  He’s still got it! In fact, I think his hand-eye coordination has even improved.  Praise God for the blessings we forget to pray for.  God is amazing.

“Give thanks to the Lord, for He is good.  His love endures forever.” (Psalm 136: 1)

Praise God:

  • He is good
  • the fever Jeremy experienced on Day 0 subsided
  • Jeremy did not need to be admitted to the PICU on Day 0
  • nothing has grown out of the cultures done from the Day 0 fever
  • Jeremy continues to be fever free
  • Jeremy is eating
  • Jeremy continues to be energetic and playful
  • Jeremy’s liver numbers are looking better

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 Jeremy would clear the congestion/runny nose
  • 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 we would extend Jeremy an extra portion of patience and grace as we try to care for him with the added hyperactivity
  • 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 Jeremy would not encounter any mucousitis (mouth, GI tract sores) that would prevent him from eating or drinking
  • that Jeremy would not encounter any fevers during the neutropenic period
  • 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’s behavior would be unaffected by the pre-medications he receives with each dose of chemo
  • that the new chemotherapies Jeremy will receive over the next  4 days will not cause any nausea or vomiting or any additional harm to his vital organs
  • that the new antibiotic will not cause any c-diff and that it would be effective in preventing any harmful infections
  • that the new medication, ATG, would not cause any more fevers, chills, body aches, rashes, hives, high or low blood pressure, tiredness, or loss of appetite for Jeremy
  • 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

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 Jeremy would not need to be admitted to the PICU
  • 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