Praise God, the last few days for Jeremy have been better days.  He hasn’t complained about belly pains, he’s eating and drinking a bit more, and he’s been transitioned to a few oral meds, which he took like a champ.  He’s also completely off pain meds, which we are very happy about.

Since he’s been feeling better, he was in a picture taking mood tonight.  Here’s a picture of Jeremy and Matty in their Toy Story pj’s.

Praise God, we were told today that because Jeremy’s liver numbers continue to look good, there is less worry from the docs about VOD! He will continue to be monitored, but we are thankful for the good news.

The medical staff are eager and excited to try and get us home before Christmas.  Of course, we’re just as eager and excited, but we’re fine to stay put too, if it comes to that.  God is good, here or at home.  Since everyone’s talking about discharge, they’ve been transitioning Jeremy to oral meds and we’ve been given a handbook on things to do and not to do when Jeremy gets home.  There are a lot of rules regarding cleaning, nutrition, and visitation.  He will basically still be on semi-isolation at home, with restrictions very similar to the ones we have in the hospital.  The rules are long, so I’ll post them in a later update.

I was reminded early this morning that there is one prayer request that I failed to add to the extensive list of prayer requests: that this bone marrow transplant would be Jeremy’s final cure.  AML is an extremely aggressive disease, difficult to treat, and rare in young children.  Even after a bone marrow transplant, there are no guarantees, only better chances.  But I was also reminded this morning of God’s unfailing love and mercy throughout this entire ordeal.  The Holy Spirit, our gift through Jesus Christ, has comforted us and interceded for us through diagnosis, cytogenetics, genotypes, infections, fevers, nausea, mucousitis, the search for a donor, bone marrow transplant, VOD, aches and pains.  There are many uncertainties and no guarantees in the years ahead, but God has always been and will always be a constant source of strength and comfort through it all.

God is our refuge and strength,
an ever present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging.

There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.
God is within her, she will not fall;
God will help her at the break of day.
Nations are in uproar, kingdoms fall;
he lifts his voice, the earth melts.

The Lord Almighty is with us;
the God of Jacob is our fortress.

Come and see what the Lord has done,
the desolations he has brought on the earth.
He makes wars cease
to the ends of the earth.
He breaks the bow and shatters the spear;
He burns the shields with fire.
He says, “Be still, and know that I am God;
I will be exalted among the nations,
I wil be exalted in the earth.”

The Lord Almighty is with us;
the God of Jacob is our fortress.

Praise God:

• He is our fortress
• for the Holy Spirit who comforts and intercedes for us
• Jeremy remains fever free
• Jeremy is eating
• Jeremy’s liver numbers continue to look great and there is less risk of VOD
• Jeremy is not experiencing any belly pain and it is much less distended
• Jeremy’s energy and playfulness has increased over the last few days
• Jeremy has not had any vomiting episodes

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 the bone marrow transplant would be Jeremy’s final cure
• that God would protect Jeremy from any scrapes or bumps as his new marrow is not producing enough platelets yet to avoid transfusions
• 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 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 Jeremy would regain his confidence in eating when he is able to
• that Jeremy would not have any more bloody noses
• that Jeremy’s taste buds would recover quickly
• 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
• that the chemotherapy Alice and I were exposed to in Jeremy’s vomit would not cause any harm
• that Jeremy’s central line would not be compromised and the bleeding we saw was not a result of anything harmful or dangerous
• that Jeremy would not encounter any more fevers
• that the CMV would be eliminated from his system, that the CMV would not infect Jeremy’s lungs or cause any issues with his eyes
• that Jeremy would not experience additional pain or tingling sensations in his hands
• that Jeremy would not encounter VOD, that whatever is ailing Jeremy’s liver would heal on it’s own
• that the swelling in Jeremy’s liver would subside quickly without additional medications

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 Jeremy would experience the maximum graft vs. leukemia effect, that cells produced by the new marrow would attack any cancerous cells
• 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