Praise God, Jeremy continues to be fever free.  The cultures done from day 0 have been consistently negative.  Jeremy’s liver numbers are also looking better.

The last few days were less than stellar for Jeremy.  He hasn’t eaten anything in the last 3 days, so IV nutrition was started the evening of day +6.  Mucousitis has reared it’s ugly head and Jeremy is feeling every bit of it.  He’s got sores on his tongues and the assumption is that it’s most likely in his throat as well.  It’s not really an assumption – we can see him strain and wince when he tries to swallow something.  The sores are also likely to go throughout his entire GI tract, which is why his belly has been consistently hurting.  It can even reach his diaper area.  He’s also experienced a small nose bleed as a result of the mucousitis and low platelets.  He’s turned down everything we’ve offered him, food or drink, even vanilla ice cream, one of his favorites.

We spoke with the doctors yesterday and it was decided to give him continuous pain meds while the mucousitis is active, which will be for the better part of 2 weeks.  The mucousitis won’t  subside until his counts start to recover.  The continuous pain meds were saddening, to say the least.  There are already so many medications coursing through his little body and it breaks our hearts to have to add more.  He is monitored while on the pain meds for any signs of respiratory distress, a somewhat rare occurrence.

They also told us that his taste buds will change.  Actually, first his taste buds will pretty much be destroyed because of the chemo, then when they start to recover, his sense of taste will be dulled.  He may want very flavorful foods for a bit – very salty, spicy, etc. just so he can taste something.

It was hard to see him in so much discomfort.  I actually suspect that he was starting to feel it more than just 3 days ago, but was just toughing it out.  His nurses know this about him, too.  He won’t complain about pain unless it’s really hurting him, so when he woke up two mornings ago crying about his belly hurting, it was real.  He’s lost all confidence with his eating and he’s definitely not as energetic as he usually is.  He has this laugh, that I haven’t been able to record, where he sounds absolutely mischievous – it’s more of a cackle, really.  We haven’t heard that laugh in about a week.  We really miss that cackle.

It’s been hard for him mentally and emotionally, too.  We look at him and we can just see this sadness on him.  He’s confused about what’s happening to his body.  Every time he tried to swallow or felt any belly pain we’ve seen him pause and frown.  As a result, he’s been very attached to Alice.  In the past he would be very understanding of Alice carrying Matty or tending to him when he’s crying.  Lately though, because of the physical pain and his confusion, he’s been demanding more and more of Alice’s time and asking her to put Matty down or pass him off to me.  It’s been a tough few days for all of us.

But, praise God, He still grants Jeremy the energy to play and laugh in between the moments of discomfort.  My silly faces and antics aren’t as funny anymore, but he still finds Legos, puzzles, coloring, stickers, movies, and the iPad enjoyable.  He will still pray with us, too.  His prayer tonight before bed: “Dear God, thank you for today, thank you for food we got.  Dear God, heal me, in Jesus name, Amen!”  We ask him if there is anything else he’d like to pray for.  “Dear God, thank you for Daddy and 弟弟.  Thank you for Mommy and Matty and Alice.  Thank you for doctors.  Please heal me.  In Jesus name, Amen!”

Every moment that Jeremy is without discomfort or pain is a moment of praise and we continue to experience God’s goodness and faithfulness.  And we thank God for you all as well, for all of your continued prayers and prayers following each update.  We truly experience God’s response.  It was our prayer and prayer request, that Jeremy would not find praying to be cumbersome or repetitive and we heard his very honest prayer tonight.  It was a blessing to hear him pray with such sincerity.

Praise God:

  • for Him, His goodness and faithfulness
  • Jeremy continues to be fever free
  • the blood cultures done from day 0 continue to be negative
  • Jeremy’s liver numbers are better
  • Jeremy still has some energy to play
  • Alice, Matty, and I continue to be in good health

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 we would extend Jeremy an extra portion of patience and grace as we try to care for him with the added hyperactivity
  • 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 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 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

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