First, we’d like to thank all of you for reading this blog and really stepping up with the bone marrow registration drives.  We are extremely touched and overwhelmed by your response.  We feel incredibly blessed, loved and encouraged by your support and eagerness to help.  Thank you for your continued prayers and friendship.

Praise God for blessing us with such an amazing kid.  As mentioned in a previous post, Jeremy has to get eyedrops to prevent conjunctivitis with one of the chemo drugs.  They do sting a little and cause Jeremy a lot of emotional and physical discomfort.  When he had to do his eyedrops a few days ago, though, he kept himself completely still, barely a whimper coming out of him.  He toughed it out and was done in a matter of seconds.  We had nothing but praise for him when he was finished and he emphatically agreed with, “I did a really good job, Daddy! I did a really good job, Momma!”  And a little bit of good news.  He’s done with his eyedrops!

His appetite was not great yesterday.  Still, he is eating a bit.  He had a few small meals today and some liquids to stay hydrated.  This new chemo regimen he’s on makes him really nauseous, even with the anti-nausea medication.  His appetite was much better in the last round and he actually gained a little weight before we left for home.  We’re praying for the same this time around.

Jeremy’s last day of actively getting chemo was today.  After today, we’ll be in the hospital for an estimated 33 days to wait for his counts to drop, then come back up again.  He’ll be neutropenic again very soon.  It’s always a scary time.  He’ll be extremely prone to infection during this time and fevers are very likely.  Every fever encountered during neutropenia is considered life-threatening because of the possibility of bacterial, yeast, or fungal infections and he will be put on antibiotics until 48 hours after the fever subsides.  We’re praying that we wouldn’t encounter any fevers or bacterial, yeast, or fungal infections.

This bone marrow transplant situation has really added to the emotional strain.  We were devastated to hear that Jeremy’s MRD results came back positive and he would be categorized as high-risk.  Then came the news that he would need a bone marrow transplant and all the risks and side effects that come along with it, including the news that a bone marrow transplant offers the best chance for long-term remission and cure for Jeremy, but does not guarantee it.  Following that was the news that a preliminary search didn’t yield very promising results.  We’re completely broken and desperate for God and every day we lay our worries, concerns, and anxieties at His feet.

There ‘s always been a fine line between love and discipline.  The line seems even finer here in the hospital.  We try to raise Jeremy to be kind, caring, and respectful of others.  It’s very difficult in this current situation to know if he is acting up just because he’s a 2 year old testing his limits or if he’s feeling crummy that day as a result of the chemotherapy.  Yesterday was an example of this difficulty when an attempt to teach him not to throw his toys on the hospital floor ended up with both him and us in tears.  It seems so unfair to ask him to be well mannered and polite when anyone else in this situation would be just as moody and cranky, if not more.

Still, the joyful moments with Jeremy far outweigh the frustrating ones.  We’ve been potty training him for a while now and he’s gotten really good at telling us about when he needs to go, as long as he isn’t too distracted.    We were down in the playroom today for neutropenic (isolated) playtime.  Jeremy was in the middle of a game when he said, “I need to sit on Daddy!” I was unsure about why he “needed” to do this, but got myself into a position that would make it easy for him to sit and as soon as he did, he said, “My peeing right now!” Our guess was that he was accustomed to sitting down on the potty and had to be in the same position before he would let himself go.  Tonight, before bed, he didn’t request his usual retelling of some of his favorite movies.  Instead, he wanted to tell us a story.  “Once upon a time, Jeremy playing iPad,  watching Nemo,  then no more battery.  The end!”  We love our kid.

Praise God:

  • that Jeremy continues to be his playful, precocious self
  • that Jeremy has been fever free and has been eating
  • for providing such incredible support in our family and friends
  • that our friends and family have really been on top of the bone marrow drives and word is getting out
  • that baby brother is doing well and letting Alice know it by kicking hard and moving around often
  • that Alice and I continue to be in good health

Please continue to 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 God would provide full and complete healing and total health for Jeremy
  • that God would sustain Jeremy through this block of treatment
  • that God would give Jeremy an extra portion of His strength for this block of treatment
  • that we would not encounter any side effects that would affect his appetite – nausea, vomiting, mouth sores and that Jeremy would have a good appetite throughout the entire block of treatment
  • that Jeremy would not encounter any life threatening side effects
  • 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
  • that God would protect Jeremy’s heart with the new medication (mitoxantrone)
  • that Jeremy would not encounter any fevers due to bacterial, fungal, or yeast infections
  • that God would provide with the whole process of finding a bone marrow match, the risks of transplant, and the anxiety of it achieving long-term remission for Jeremy
  • that word would continue to get out about the need for a perfect bone marrow match and that one would be found for Jeremy
  • that Jeremy’s little brother would be a match and that there would be a sufficient volume of cells in the cord blood to qualify for a good transplant
  • that God would continue protect Jeremy’s central line and there would be no infections as a result of it
  • that Alice and I would not get sick in order to care for Jeremy
  • that baby brother would be full term before deciding that he wants out