We’re back.

Praise God, we were given one of the largest rooms in the BMT unit. The team was aware of our desire to bring the whole family and were very supportive. Our room feels like 1.5 times the size of our room in previous rounds and we have no problem bringing in everything that we need, including a borrowed cosleeper for Matty (thank you Tihons).

We have a lot of rules to follow in order to care for Jeremy according to BMT policy. We are not allowed to use the bathroom at all for the 6-8 weeks that we’ll be here. There is a common bathroom and shower that is available for us to use. Anytime we leave the hospital and re-enter, we will be required to do a 2 minute hand and arm scrub before entering Jeremy’s room. We are also not allowed to eat in his room until his ANC recovers.

Jeremy will need to be bathed once a day (we do this anyway and in previous rounds dd it twice most days) with sterile water. He will not be able to use the sink to wash his hands, but will need to use sterile water that they give us in bottles. He will also need to rinse his mouth with pharmacy prescribed mouthwash 4 times a day. Linens will need to be changed once a day.

Transplant treatment days are numbered starting at negative days. Since Jeremy will be on a 10 day chemo regimen, he will start on day -10. Day 0 will be the day of transplant and day +1, +2, etc. will be recovery days.

Day -10 started out pretty busy. We had a late start this morning and had a lot to pack. Alice’s parents came by in the morning to bring us breakfast and watch the boys while we loaded up the car and took care of some last minute things.

When we arrived at the hospital, Jeremy started tugging at his ear and looked pretty bothered by it. The doctors took a look and didn’t see anything alarming that would prevent him from starting treatment. He also had a slight rise in temperature, but praise God, it settled down after a few hours.

Jeremy was pretty grumpy tonight and acting up quite a bit. He did the complete opposite of everything we asked him to do. I got pretty frustrated with him, but later realized that it was probably because he doesn’t want to be here and acting out was one of the ways he showed it. He’s already asked to go home once since we’ve been here.

For us it’s been a bit of a roller coaster.  At times we can be worried and at times we are not worried at all.  It is a daily, often hourly, prayer – to release everything to the Lord and to trust and be obedient to Him regardless of circumstance.  We are reminded that we have not been abandoned, that God is and always has been near and close, even during this time of temporary suffering (Psalm 46:1, Hebrews 4:14-16).  We are reminded that He is sufficient, that His power is made perfect in weakness (2 Corinthians 12:9).  We are reminded that as difficult as this situation is, it is good for us (Romans 8:28).  We are reminded that we need not fear (Joshua 1:9, Isaiah 41:10).

Praise God:

  • for His word, the source of awesome truth
  • for Him, providing for Jeremy the donor that he needs
  • that Jeremy’s temperature did not continue rising
  • that there wasn’t anything that would prevent Jeremy from starting treatment
  • that we were provided a larger room, making it easier to care for our boys

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 Jeremy would clear the congestion/runny nose
  • that nothing would grow out of the nose swab done last Friday
  • that there would not be anything causing the runny nose that would be harmful to Jeremy during chemo or transplant
  • that Alice and I would not get sick in order to care for our family
  • that baby brother would nurse easily and sleep well
  • that God would give us wisdom in teaching Jeremy in the hospital environment

Please pray for the conditioning chemo regimen:

  • that it would be effective in destroying any lingering cancer cells
  • that Jeremy would not encounter any mucousitis (mouth, GI tract sores) that would prevent him from eating or drinking
  • 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 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 potential 9/10 donor would follow through with donation, so that a haplo transplant can be avoided and thus avoiding total body irradiation and a riskier transplant
  • that the donor cells would graft, 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

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