Praise God, day -3 and day -2 was uneventful.  Jeremy did not get any fevers as a result of the full ATG dose.  He ate fairly well on those days, too.  He did have a lot of trouble sleeping, though.  The ATG comes with a few pre-medications (Tylenol, Benadryl, and dexsomething, a steroid) that are supposed to help with the potential reactions.  The steroid can keep him awake at bed time.  Last night was particularly frustrating because it took him 4 hours to finally fall asleep.

Day -2 (yesterday) was Jeremy’s last day of chemo!  Praise God that he ate through the chemo and did not experience any nausea or vomiting as a result of it.

Today was the last dose of ATG.  Praise God that Jeremy did not have any rashes or hives and did not have any fever after that first day.  We’re told that reactions can still occur up to 48 hours the last dose.  We continue to pray that Jeremy will not experience any reactions.

Praise God, Jeremy’s liver numbers came back down!  I believe that this means no additional damage to his liver, so hopefully it is on the mend.  We also got back the preliminary results of the nose swab and it’s negative for influenza.  We will hear back about rhinovirus or anything else later this week.

Praise God, the donor followed all the way through with donation! We were told this evening that the marrow is in the hospital’s blood bank for preparation.  Jeremy is schedule for transplant tomorrow around 11am.  We were told earlier today about what the day of transplant and subsequent days might look like.  There will be a few doctors hovering over Jeremy, checking in on him while he gets the transplant to be sure that things are going well.  During and after transplant, Jeremy will be given high levels of hydration because he and the donor have different blood types.  The difference in blood types can cause some fluctuations in his magnesium levels and the hydration is to help him flush out any impurities.  There’s more to this, but I couldn’t catch all of it.  There was mention of the PICU, but again, I wasn’t able to catch all of it.

Jeremy’s eating was pretty poor today.  There doesn’t seem to be any visible sign of mucousitis in his mouth, so it may be the sleeplessness catching up with him.  He spit out about half of the food that we gave him for breakfast, lunch, and dinner.  It’s disheartening when he doesn’t eat and I have to confess that I’m too hard on him when it comes to this.  It’s important that he takes in calories so that his body has some of what it needs to get through this treatment.  I get so angry when he spits it out because the food is so critical.  Then I’m reminded of all that he’s going through already and what it must be like for him – for his body to feel so different and for him not to know why.  Then to have his Daddy, who just a minute ago was laughing and playing with him, get upset with him for not wanting to eat the same thing over and over again (the hospital menu is somewhat limited and becomes even more limited when there’s only a few items that Jeremy will actually eat).

I can’t exactly place it, but there was some sadness today, too.  Jeremy will still be our beautiful, sweet little boy, but I guess a part of us was sad because we were saying goodbye to a part of him forever.  We were also reminded today, looking back at the last 5 months and seeing how much he’s matured, how hard it still is too see him in this situation.  When most 2 year olds are off in the playground, running and jumping, scraping their knees on sidewalks, and learning through play, Jeremy is here in isolation, constantly washing his hands and asking for clarification on things he can and cannot touch in the hospital room.  He’s learned a lot in the last few months, there no doubt about that, but much of that learning was through pain inflicted from drugs and medical procedures.

And yet, as we reflect on the last few months, we are beyond thankful for how the Lord continues to provide for Jeremy and how He delivered everything in His perfect timing.  We have seen and experienced much of God’s goodness and faithfulness, which has constantly been there, but I’m ashamed to say that the busyness of our lives (mine especially) clouded our ability to truly appreciate it.  I’d be lying if I said we no longer have our moments of fear and anxiety, but in those moments God’s word and the Holy Spirit remind us that He has always and will always be beside us and in Christ we have eternal hope.

“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand.  And we boast in the hope of the glory of God.  Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5: 1-5)

Praise God:

  • for His peace, hope, and love
  • Jeremy has been fever free the last two days
  • the marrow donor followed through with donation and the marrow made it here without any issues
  • Jeremy ate through the 10 days of chemo
  • Jeremy’s liver numbers are looking better
  • Jeremy has not experienced any severe, untreatable reactions from the ATG
  • the nose swab’s preliminary results came back negative
  • Matty’s diaper rash is much, much 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 nothing will come out of the nose swab that was done last Friday
  • 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

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