Jeremy spiked a fever last night, so it’s back to the IV pole. He’s on three antibiotics until the fever subsides for 48 hours and his fluids have been bumped up to full maintenance. After 48 hours, two antibiotics will be taken away, but he’ll stay on one for the rest of his recovery time in the hospital. He’s had a fever all day today, the highest being 39.1 C, or 102.5 F.

Last night would have been a good night of sleep if we didn’t encounter that fever. There was a lot of loud, obnoxious beeping with the machines pumping in the antibiotics. And the added fluids made Jeremy go to the bathroom a lot. Actually, there’s a praise here because Jeremy woke himself up to go potty a few times throughout the night. Potty training continues in the hospital and Jeremy’s been really easy to teach.

We also noticed a small, rash-like bump on his leg yesterday. The doctors looked at it again today and said they’d send in dermatology to take a look. It looks like any standard bug-bite, but because Jeremy is neutropenic, there’s more cause for concern in case it may be a skin infection. They decided to do a skin biopsy on the bump, to investigate and be sure. It was with very mixed feelings that we reluctantly agreed to it. On one hand, we want to be sure that it isn’t an infection and if it is, that it is treated appropriately. On the other hand, we really hate to subject him to any more poking and prodding, especially if it will be painful.

The procedure was bed-side. Alice lay in the bed with him, while I held up the iPad to try and take his mind off of it. It was awful. It was the most Jeremy cried since his days in our first hospital when he would get pokes all over his hands and feet to draw blood. This looked much more painful. They injected a local anesthetic to numb the area, used an instrument to take off a layer of skin, then stitched the area back up. I’m not sure if the doctor did it correctly or not, but it looked like Jeremy felt all of it. Our poor kid was writhing and thrashing in pain and we had to help hold him down for it. Jeremy was crying, Alice was crying, I was crying. They stitched him up and put on a pressure bandage, but it ended up bleeding some more and the nurse had to put on a new dressing. The nurse gave him some pain medication and Jeremy calmed down a bit. He still felt it, though, and asked us to pray for it.  Jeremy saw Alice crying and despite his own tears, turned to his Momma, asked her if she wanted a tissue, and gave her a hug, telling her, “It’s ok, Momma.”  There are no words to describe how much we love Jeremy and how precious and special he is to us.

We are still dealing with the aftermath of the skin biopsy procedure.  Jeremy is very protective of anyone getting too close to him, especially his leg, where the procedure was performed.  He wouldn’t let Alice or me near it until much later this evening.

Appetite-wise, it’s been poor today. He did eat some, but with his fever and the skin biopsy, Jeremy didn’t really felt like eating, and I can’t blame him. Even with the pain in his leg and being tired from crying, he was conversational when he woke up from his nap. He saw Alice’s mom and knew that it was dinner time saying, “No more jookie jook. Because jookie jook make Jeremy cry.” Both our moms make jook and it’s actually really good, but he’s been having jook for the last few months and he finally got tired of it.

The skin biopsy procedure was a reminder of just how tired, stressed, and exhausted we are in this situation. Jeremy was subjected to all this discomfort and pain. And we, his parents, the ones designated to care for and love this child – all we could do was hold him down and ask him to bear it.

We continue to turn to God for His strength. Honestly, our strength has been depleted since day one of his diagnosis. There hasn’t been a single day where one of hasn’t wept because of what our precious Jeremy is going through. We’re completely broken and weak just laying it all before God.  He is in complete control of this situation.

Praise God:

  • for Him, for Jesus in whom we have eternal hope
  • for Jeremy and the joy he continues to bring to us
  • that we had a good 4 days without fever and that Jeremy was able to enjoy some freedom, not being attached to the IV pole
  • that Alice and I continue to be in good health
  • that baby brother is doing well
  • that word continues to spread about the bone marrow drives and that others will also benefit from it

Please 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 God would provide full and complete healing and total health for Jeremy
  • that God would sustain Jeremy through this block of treatment
  • that Jeremy’s bone marrow aspirate at the end of this block of treatment would show < 5% blasts (leukemia cells) in his bone marrow and negative MRD (minimum residual disease)
  • that God would give Jeremy an extra portion of His strength for this block of treatment
  • that we would not encounter any side effects that would affect his appetite – nausea, vomiting, mouth sores and that Jeremy would have a good appetite throughout the entire block of treatment
  • that Jeremy would not experience any more stomach pains
  • that Jeremy would not encounter any life threatening side effects
  • 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 protect Jeremy’s heart with the new medication (mitoxantrone)
  • that Jeremy would not encounter any fevers due to bacterial, fungal, or yeast infections, especially now that Jeremy is neutropenic
  • that fevers Jeremy does encounter would subside quickly
  • that the skin biopsy culture would show no infections
  • that Jeremy skin biopsy site would heal quickly and would not cause too much pain or discomfort
  • that God would relieve Jeremy of the traumatic stress of the skin biopsy procedure
  • 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 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’s little brother would be a match and that there would be a sufficient volume of cells in the cord blood to qualify for a good transplant
  • that God would continue protect Jeremy’s central line and there would be no infections as a result of it
  • that Jeremy would sleep better at night
  • that we would continue to be reminded of God’s greatness and provision and that we would not allow fear to creep in
  • that Alice and I would not get sick in order to care for Jeremy
  • that God would protect Alice and baby brother from all the emotional stress
  • that baby brother would be full term before deciding that he wants out
  • for our neighbors who are also enduring trials of their own