Praise God for another fever free, mostly belly pain free day.  Jeremy ate fairly well today, too.  Also, Jeremy is able to be unhooked from the IV pole for the majority of the day, getting hooked back up in the evenings for fluids and an antiviral medication to keep the CMV away.

Last week, we received training on how to administer IV fluids and his antiviral medication.  We’ll also be tasked with maintaining his central line, as in the breaks from previous rounds of chemo.  We’re nervous, not having the support of nurses and doctors 24/7, but praying that God will give us the diligence and ability to take on these new responsibilities.

When we do get to be home, it looks like the isolation rules are still in place.  Jeremy’s immune system will not reconstitute itself for the better part of 6 months to 1 year.  He isn’t allowed to go to any crowded places – shopping malls, the zoo, libraries, church, etc.  Visitation is limited as well.  He’ll be allowed to have scheduled visits, but not more than two people at a time.  Anyone (and anyone who is around anyone) who is exhibiting signs of illness – coughing, sneezing, sniffling, sore throat, runny nose, fever – for the past 7 days will not be allowed to visit.  Caregivers of young children are questionable, too.  And, unfortunately, that means Jeremy’s friends will not be able to visit.

Toward dinner time tonight, Jeremy had to go to the potty and we noticed some blood in his stool.  The first time, we were told it could a combination of the previous mucousitis and low platelets.  When it happend a second time, right at bedtime, it was classified as active bleeding and samples were sent to the lab for c-diff and rotorvirus.  For the most part, Jeremy is still his usual self and isn’t complaining about belly or bottom pains.  Still, the docs here are very conservative, so it doesn’t look like we’ll be making it home before Christmas.

We’re disappointed.  Our minds were set on going home on 12/24 and we had packed away a lot of our things in the car tonight in anticipation.  Jeremy had a huge smile on his face when we told him that it was very likely that we were going to be home soon.  His face completely lit up at the mere mention of it.  He even planned out where he was going to sleep and who was going to be in the bed with him.  “I want to sleep with Mommy and Daddy and 弟弟!” It broke our hearts to tell him that we won’t be going  home as soon as we thought.  When we told him, he didn’t break down and cry or throw a tantrum.  He lay in bed quietly for a moment, then told us, “I’m sad.  I need tissue.”

Still, as disappointed as we are, we would rather Jeremy get the care he needs, even if it means staying in the hospital longer than we expected.

“However, as it is written: ‘What no eye has seen, what no ear has heard, and what no human mind has conceived’ – the things God prepares for those who love him.” (1 Corinthians 2: 9)

I also wanted to make a mention of how awesome Jeremy is at taking his oral medications.  Every morning, he is given at least four oral syringes.  He takes each of them, one after the other, fully cooperative.  There is another medication that he needs to take every 8 hours, scheduled for 8am, 4pm, and 12am.  The 4pm and 12am dose, we need to wake him up from his nap and nighttime sleep, respectively.  He wakes up, takes his dose, and goes back to sleep.  No complaining, no crying.  Praise God for how He has prepared Jeremy for all this.

Praise God:

  • for the things He has prepared for those who love Him
  • Jeremy is fever free
  • Jeremy is eating and drinking
  • Jeremy can be unhooked for the majority of the day
  • Jeremy hasn’t complained of any serious belly pain
  • Alice, Matty, and I continue to be in good health in order to care for Jeremy
  • for how He continues to protect Jeremy’s vital organs from the harsh chemotherapies and treatment

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 the bone marrow transplant would be Jeremy’s final cure
  • that Jeremy would not develop any late effects from the chemotherapy and drugs used to treat him, especially any second cancers
  • that God would protect Jeremy from any scrapes or bumps as his new marrow is not producing enough platelets yet to avoid transfusions
  • 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 Jeremy would regain his confidence in eating when he is able to
  • 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’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’s liver and kidneys would continue to be well
  • that Jeremy would not experience any more bleeding on the potty

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 Jeremy would experience the maximum graft vs. leukemia effect, that cells produced by the new marrow would attack any cancerous cells
  • 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

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