This is a long update, as it will probably be a while before I’ll be able to update again.

Praise God, Jeremy’s been a great big brother, often patting Matty when he’s crying, trying to comfort him, or yelling at him to wake up if it’s time for him to nurse.  He continues to be very protective.  If anyone gets too close to Matty’s bassinet, he’ll immediately place watchful eyes on them to be sure that they won’t try anything funny.  Several nurses and doctors have had to ask Jeremy for permission to carry Matthew, only for Jeremy to tell them, “It’s ok looking.  Only Mommy Daddy carry him.”

Praise God, Jeremy’s been fever free and continues to eat well.  The cultures done on his central line have also shown negative cultures for 3 consecutive days.  Since he’s been fever free with negative blood cultures, the doctors took off the more toxic antibiotic and he will be on the less toxic zosyn for the duration of our stay in the hospital.  He still has that small spot on his arm, but doctors don’t seem to be too concerned about it, since he encountered those spots in the last round and the biopsy never showed anything.

There continues to be challenges with discipline and sleeping in the hospital.  We’ve been noticing some changes in his behavior.  He’s gotten very demanding, sometimes yelling at someone when they do something that he doesn’t like.  With the nurses and doctors, we can see why, but when it comes to us or his grandparents, it saddens us.  He’s gotten a bit disobedient, too, and sometimes, outright defiant.  I can get easily frustrated with him in the evenings, especially if it takes him an hour and a half to fall asleep.  I feel like I fail here, in losing my patience with him, forgetting what he’s been through.

Even with the challenges, Jeremy remains a joy.

At around 2pm today, the hospital’s chaplain came in to our room and spent some time with Jeremy.  She passed off some information to Alice about places of worship around the area and also gave us a bible verse from the book of Isaiah on a small bookmark.  She wanted to close her time with us with a word of prayer (she’s prayed with us in the past).  We asked Jeremy to put his toys down for a moment so we could pray together and he lead us, “Dear God, thank you for today.  Thank you for Mommy and Daddy and Jeremy and 弟弟.  Dear God, heal me, in Jesus name, Amen.”

At around 3:00pm today, we received the results of Matthew’s cord blood.  He is not a match for Jeremy.  The news was disappointing to say the least.  We had prayed so hard and were so desperate, pleading with God to provide rescue in this way.  Alice wept, as I bottled it up, staying mostly quiet while the doctors continued to tell us about how great their outcomes are with haplo-compatible transplants.  When they left, Alice continued to weep and I joined her.  We are battered and beaten, broken, completely weak and helpless.  In my weakness, I couldn’t even muster up the words to try and encourage my wife.  I couldn’t tell her that things will be ok.  We could only remind ourselves what we both know to be true – that God is sovereign in all situations, that the Holy Spirit comforts us, that in Jesus, He suffers beside us.  Alice prayed, reminding us that God is the same God, regardless of the news we just heard, that He is still Jehovah Jireh and Jehovah Rapha, our provider and healer.  I looked at the bookmark that the chaplain left with us.  It was a verse from the book of Isaiah, 43:1-3.

“Do not fear, for I have redeemed you; I have summoned you by name; you are mine.  When you pass through the waters, I will be with you.  And when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord your God, the Holy One of Israel, your Savior.”

Praise God for His word, which continues to be a source of truth and encouragement and a reminder of His holiness.

At around 4pm, after more tearful praying, a doctor from the bone marrow transplant team came in to talk to us.  Praise God, we were told that a potential 9/10 donor had just been found, shortly after they had found out about Matthew’s cord blood not being a match.  The potential donor will need to have a physical exam to be screened for infectious diseases, hep b, etc.  Doctors tell us that it is very likely that the donor will follow through with donation since he/she went in to give blood for the follow-up typing.  We asked if a 9/10 is a good thing.  They said that in this case, it is good and an acceptable mismatch.

Our parents continue to provide unconditional love and support.  I can forget sometimes that our son is their grandson and they are affected by this just as much as we are.  The news they heard today about Matthew not being Jeremy’s match was devastating for them and though they put on strong faces for us, their sadness and disappointment were palpable.  They are here everyday, providing meals for Jeremy in addition to Alice and myself and are equally invested in this, putting everything aside to care for their children and grandchildren.

I should also take a moment to mention the great team that we have for Jeremy’s treatment.  As soon as Matthew’s cheek swabs were available, a member of the bone marrow transplant team went upstairs to pick them up herself to be sure that the labs would be done stat. They told us today that they are right there with us.  They had all been passing emails back and forth every day since Matthew’s birth anxiously awaiting the results from his cheek swabs.  They’ve all been very supportive, offering tissues or a reassuring touch on the shoulder when they see tears.  One of the doctors gave Alice a hug today.

There hasn’t been much time for media, but the chaplain that came by today asked if we wanted our picture taken together.  We haven’t had a family photo since Matty’s birth, so we thought it was a great idea.

And here’s a video of Jeremy carrying Matty for the first time.

Praise God:

  • for Him, His word that continues to be a source of truth and encouragement
  • for Him, Jehovah Jireh and Jehovah Rapha, that He continues to provide for and sustain Jeremy
  • that a 9/10 donor has been identified
  • that Jeremy continues to be fever free
  • that Jeremy continues to eat well
  • that Jeremy’s line infection has cleared
  • that Matty is doing well
  • that Alice is recovering well from Matty’s delivery
  • that Matty’s delivery was smooth and complication free
  • that Jeremy sleeps through Matty’s nighttime feedings and diaper changes
  • that our parents continue to provide unconditional support

Please continue to pray (new/updated items in bold):

  • 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 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 the potential 9/10 donor would be a suitable donor for Jeremy, in perfect health and free of infectious diseases (hep B, etc)
  • that the potential 9/10 donor would follow through with donation
  • 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 would not experience any more stomach pain
  • that Jeremy would not experience any discomfort when using the potty
  • that Jeremy will not encounter any life threatening side effects during this round of chemo
  • 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 continue to protect Jeremy’s heart from the lasting effects of the medication (mitoxantrone) from the last round
  • that God would protect Jeremy from any bacterial, yeast, fungal, or viral infections
  • that God would guide the doctors in the decisions being made regarding Jeremy’s central line
  • that Jeremy would not encounter any more fevers for the duration of this round
  • that God would protect Jeremy’s kidneys and livers as they process the antibiotics and residual chemotherapies
  • that Jeremy would sleep well during this round of treatment
  • that Jeremy would continue to eat well during this round of treatment
  • that Alice and I would not get sick in order to care for our family
  • for adjustment for all of us as we learn to care for one another in the hospital setting
  • that Alice would recover quickly from baby brother’s birth
  • that baby brother would nurse easily and sleep well
  • for our neighbors who are also enduring trials of their own
  • for our parents – that they would have rest and place their trust in Jesus and receive His comfort
  • that God would give us wisdom in teaching Jeremy in the hospital environment
  • that we would be witnesses of God’s love and grace to our neighbors and the medical staff