Praise God for another fever free day.  Doctors told us today that Jeremy’s liver and kidneys look great.  The day started off quiet, but got a little more eventful toward the evening.

This morning, we received some great news from the doctors and nurses.  Jeremy’s white count is trending up! For context, since Day 0, Jeremy’s been at < 0.1 on both white cells and neutrophils.  Today, his white count was 0.4 and his neutrophils are at 0.18!  Praise the Lord!

These counts are expected to fluctuate, but as long as the trend continues upward everything is looking good.  The doctors said now is when they break out the crystal ball and try to estimate a discharge date.  For Jeremy, as long as things continue the way they do, he may get to go home on 12/24, a day before Christmas! Being home for Christmas is something that’s been in the back of our minds off and on since admission.  Praise God for how He knows the desires of our hearts.  Regardless of whether or not we actually get to be home for Christmas, we were overjoyed today to hear that Jeremy’s counts made an upward trend.

There are a few criteria for discharge: 1) ANC (neutrophils) need to be > 0.5 for 3 consecutive days, 2) Jeremy needs to be eating and drinking on his own, and 3) Jeremy needs to be able to take his medications orally.  The ANC is something we will need to wait for.  Jeremy has been doing well on his oral medication.  He only has one right now, but when all the meds he’s on gets switched from IV to oral, it may become a challenge.  Eating and drinking on his own will definitely be a challenge.  We’re praying that Jeremy will regain his confidence in eating soon.

Now that Jeremy’s counts are going up, he will be facing another challenge: graft vs. host disease.  As mentioned in previous posts, gvhd can range from mild and treatable to severe and fatal.  Graft vs. host disease can really affect any part of the body, but the most common are the skin, liver, stomach and/or intestines.  This is something that weighs heavy on our hearts, the uncertainty of it all.  We continue to lift this worry up to the Lord, praying that Jeremy will not experience anything that would further threaten his life or adversely affect his quality of life.

Praise God, Jeremy also took a few sips of apple juice today.  A sip of juice for a 2 year old usually isn’t anything out of the ordinary, but when Jeremy took those sips today our eyes started to water.  We were ecstatic to see Jeremy finally, willingly take in something on his own.

Here’s a photo of Jeremy earlier in the day, before it got less quiet.

Toward the end of the day, Jeremy started complaining of stomach pains.  Shortly after he mentioned the “belly hurts,” he had a few vomiting episodes, followed by some diarrhea.  There were some bits of blood in both.  We were told that it’s likely from the mucousitis, but there’s no way to be sure.  Hopefully, the nausea and diarrhea are a result of the medications he’s on and not something more serious.  It took some time and a dose of Benadryl to help the nausea, but his stomach eventually settled and he was able to get some rest.

It’s never easy to see Jeremy in any kind of discomfort and we certainly haven’t gotten used to it, despite having to witness it almost daily for the last 4 months.  We do the best we can in order to care for Jeremy, but at the end of the day, the most, and the best, we can do is pray.

“Have I not commanded you? Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” (Joshua 1:9)

Praise God:

  • that through Christ and the Holy Spirit, God is always with us
  • Jeremy is fever free
  • Jeremy’s counts are starting the trend upward
  • Jeremy’s liver and kidneys are looking well

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

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