Praise God for another fever free day.  Jeremy still talks about stomach pains.  The medication he’s on to fight the CMV can cause nausea, so we think the “belly hurt” he talks about is actually nausea.  We kept a close eye on him, watching for any signs of pain, but he seemed to be doing fine for the most part, playing, coloring, watching a movie.  He even came down to the floor for a little bit and did some superhero poses.

Praise God, the blood cultures continue to be negative.  The tobramycin was discontinued yesterday because the cultures have been consistently negative.

The chest x-ray results came back and we were told that there is “something” in his lungs. The doctors aren’t too “excited” about it, though, since Jeremy is generally looking well for this stage of treatment.  They tell us that the x-rays can be over-read sometimes.  Additionally, if it was CMV related, he would be feeling much crummier.  It’s possible that Jeremy may be holding on to extra fluid, since he’s been on extreme hydration since day 0.  If he starts to retain too much, they’ll give him something to pass the extra fluids.  For now, we’re told that he’s fine.  We continue to pray that the CMV would not reach his lungs, eyes, kidneys, or other organs and would not cause any issues for him.

Jeremy toughed out his eye drops yesterday.  It was 3 drops on each eye for 2 different medications, making it a total of 6 drops per eye.  He had to take a break in between the two different medications, but he toughed it out.  He was crying, but managed to keep himself still.  For the actual eye exam, Jeremy surprised us all.  He was extremely cooperative as the opthamologist probed and shone lights in his eyes.  Praise God, Jeremy’s eyes look great.  The opthamologist told us that he saw about 20 kids that day and Jeremy was by far the most cooperative.  Praise God for how He continues to provide Jeremy with the maturity and understanding he needs to cooperate.

Eating continues to be a challenge.  Jeremy is getting everything he needs via the IV nutrition, so he hasn’t been feeling hungry.  Prior to the IV nutrition, Jeremy was already feeling the effects of the mucousitis and strained to swallow every bite.  Because of this, he’s lost a lot of confidence in eating, fearful that each spoon of food might bring back the pain.  He’s also pretty nauseated on most days, so we’re thinking that food is simply unappealing right now.

We’ve also noticed that he’s been feeling more tired in his hands.  Occasionally, he will be coloring and he’ll stop, telling us, “My hand is tired.”  It’s possible that this is a side effect of some of the chemo’s he’s received.  He could be feeling some tingling in his hands, but doesn’t know how to express that kind of sensation.

There are parts of his body that are getting darker, as well – another side effect of the conditioning chemo, busulfan.  His fingers, toes, and folds of skin under his arms have definitely been affected.  The doctors tell us that the extra pigmentation usually goes away in a few months.

Jeremy has been experiencing some of the emotional impacts of being in isolation.  The other day, Alice’s parents came over with a present for him and he asked, “Can they come in?”  Of course, we had to tell him that they cannot come in yet.  He also saw that Alice’s mom had changed her profile picture on Facebook and observed that the background was our home.  He looked at it, paused, sighed, and told us, “We’ll go home one day.”  It breaks our hearts to hear him sigh as he comforts himself.  It’s amazing how he’s able to cope with all this at his age, but it doesn’t seem right that he has to.

Despite the challenges, we continue to experience and praise God for His daily mercies.  Jeremy continues to enjoy his usual activities – coloring, puzzles, and Legos.  Jeremy has been more affectionate lately, too, often telling us he loves us.  He really enjoys sitting with Alice and will stop what he’s doing to give her a hug and tell her that he loves her.  “I love you, Momma.”  And he won’t leave me or Matty out of it either, telling us, “I love you, too, Daddy.  And I love you, 弟弟.”  He gives Matty the most adoring looks when we bring Matty over to Jeremy’s bed and looks for every opportunity to hug him or carry him.  He’s a great big brother.

Praise God:

  • for His continued provision
  • Jeremy continues to be fever free
  • Jeremy continues to enjoy his daily activities
  • for how He has provided Jeremy a mature understanding of his current situation
  • Jeremy’s eyes are healthy
  • nothing’s grown out of the blood cultures

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 nothing would grow out of the blood cultures and 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