Another lengthy update because it may be some time before the next one.

Praise God for another quiet few days.  Jeremy continues to be fever free and eating well.  He really enjoys that free time off the IV pole and uses it to run from one end of the room to the other or jump over obstacles (small spots, bits of tissue) on the floor.  He stays occupied with puzzles, legos, Spider-Man activity books, Yo Gabba Gabba, Curious George, and Sesame Street.  Sleep continues to be a challenge and it is quite frustrating, since sleep is so crucial to his recovery.  Still, we thank God for Jeremy’s energy in spite of the harsh therapies he’s received.

On the topic of recovery, praise God Jeremy’s counts are definitely trending upward.  This is great news because it means that he won’t need anymore transfusions for this round and now it’s just waiting before we can go home for a little bit.

Caring for two kids in the hospital is challenging, but we are blessed to be able to do it together.  My work has been extremely flexible and understanding so that my primary responsibilities are to care for my family.  Alice is continuing to recover well and gets more and more agile each day.  Jeremy loves his little brother, never getting upset when Matty is crying and sometimes even wanting to pat him to comfort him.  The other day, Jeremy mentioned wanting to go “play on the ducks,” a reference to the paddle boats at Gilroy Gardens, and that he wanted to bring Matty, too.  Matty’s not quite at the age where Jeremy can fully play with him yet, but he does what he can.  Here’s a video of Jeremy playing peekaboo with Matty.

Praise the Lord, on Friday we found out that the 9/10 donor has been confirmed to be 9/10! The doctors have told us that this is an acceptable mismatch, the mismatch being at C.  I have no idea what it means to be mismatched at C.  I know there is a difference between allele and antigen, but I have limited medical understanding.  I’ll have more details on what this and “acceptable” means when we get to speak with the transplant docs.  For now, what we do know is that this is better than a haplo transplant and paperwork has been submitted to start the process.  Praise God for how He provides.

The confirmed 9/10 will still need to pass infectious disease workup and a physical exam. We are praying that he/she will pass and follow all the way through with donation.

One of the reasons we’re concerned about a haplo transplant is because it will likely require radiation to improve the chances of the transplant engrafting.  Radiation by itself is already very toxic to the body, but for a child Jeremy’s age, it can also cause some cognitive disabilities later on in life.  Jeremy is an incredibly bright kid and the thought of him having any sort of cognitive disabilities because of a treatment intended to cure him is heartbreaking.  Haplo transplants also carry other risks, including being extremely immunosuppressed and at high risk for infection.  There is also greater risk of chronic graft vs. host disease.

Even with a 9/10 or a perfect 10/10 match, there are risks.  The conditioning regimen is a series of doses of very intense chemotherapy, which have their own side effects.  Then there’s the transplant itself, which runs the risk of graft rejection, graft vs. host disease (GVHD) – ranging from mild and treatable to severe and fatal.  Our hearts are burdened daily by what could possibly happen to our dear son.  At the same time, we are reminded by how God continues to provide and sustain Jeremy, how He continues to pour out His mercy and love.  Jeremy does not have the less favorable genetic markers (FLT3), his CSF has not shown any signs of leukemia, he’s achieved remission, he’s maintained his weight through each round of treatment, every infection he’s had has been treatable and they’ve always cleared, he continues to have great energy, and a 9/10 donor has been identified.

We are praying that the 9/10 match would be God’s way of curing Jeremy, that we’d be able to avoid a haplo transplant and total body irradiation.

I need to confess something here.  When I heard that a 9/10 had been found I was incredibly thankful.  A part of me though, in my weakness and reliance on numbers and outcome statistics, wondered if a 9/10 was good enough.  How quickly I forgot that God had provided.  At a time when we were desperate and broken about the possibility of a haplo transplant, God provided with news of a 9/10 match.  How foolish I was to think that what God had provided was not “good enough.”  I thank God for His love, mercy, and provision in spite of my foolishness.

Regardless of where this goes – whether Jeremy’s transplant is a 9/10, 10/10, or haplo – we are assured that God is sovereign in this and every situation.  His grace is sufficient.

Praise God:

  • for Him, He is sufficient
  • for Him, His sovereignty in all things
  • a 9/10 match has been confirmed
  • Jeremy is fever free
  • Jeremy is eating well
  • Jeremy and Matty continue to sleep through each other’s noises
  • Alice continues to recover well
  • Matty is eating and sleeping well

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, so that a haplo transplant can be avoided and thus avoiding total body irradiation
  • 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 and that he would cooperate with our efforts to get him to sleep better
  • 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