Thank you all for your prayers.

Before getting into the update, I wanted to give some context in regards to the dressing change (also as a means of record keeping for us).  Each dressing change usually consists of the following items:

1. A cleaning solution (so far we’ve used Chlorhexidine and Betadine)
2. A clear bandage/film/dressing (so far we’ve been given two options – Tegaderm and Optsite)
3. A microbial disc to place on top of the site as additional protection against infection (it is soaked in Chlorhexidine)

By default, with all central line dressings, the nurses and doctors choose to use Chlorhexidine and Tegaderm to clean and dress (the microbial disc gets put on regardless).  The default combination caused some slight irritation before, so it was changed to Chlorhexidine + Optsite. This seemed to be fine, but the next dressing change with this same combination caused an allergic reaction, possibly because the Chlorhexidine wasn’t given enough time to dry. With the next dressing change, they wanted to eliminate the possible factors causing the reaction, so they used Betadine + Opsite. The result was better and the rash slowly started fading. With that they decided to try Chlorhexidine + Opsite. This also worked out fine. Next was attempting to go back to Chlorhexidine + Tegaderm. The nurses prefer this combination because it is considered a better, more sterile and more protective dressing. Going back to this, though, brought the rash back with a vengeance. This was the latest dressing that caused Jeremy to scratch it right off resulting in the freakout last night.

They changed the dressing today going back to Betadine + Optsite and Jeremy’s been complaining about itchiness much less today. Additionally, since the microbial disc is soaked in Chlorhexidine, they decided not to put that on to avoid further irritation. So his dressing is currently without additional protection against infection. They will likely put the disc back on after the irritation calms down (which we think may be two dressings from now). We like the additional protection and are a bit concerned about his infection risk without it.

Also, good news! Jeremy’s counts are trending upward! His white blood cell (including neutrophil) and platelet counts are climbing up.  His neutrophil count going up is representative of his immune system rebounding.  While we are glad to see his counts go up, the white blood cell count still makes us nervous as that includes any potential leukemia blasts. We are praying against this because it will determine his risk category when the doctors do the bone marrow aspirate. We continue to pray for Jeremy to be in remission after this first block of treatment and recovery.

Today’s Jeremy moments

There are many, but two stood out today.

Here at the hospital, the Child Life Services group hosts a weekly bingo game. It’s worth noting that everyone wins. If they’re at the end of the game and there are kids without bingos, they’re instructed to call to come and get a prize anyway. It’s pretty great. We’ve been here long enough so that Jeremy knows there’s a bingo game every week. We had a really rough night so we were expecting him to take a longer nap. But, an hour into his nap, he woke up, decided not to go back to sleep and whispered to Alice: “My awake now, want bingo surprise, please.”

The second was when I had taken him to the potty. He told me he was finished and we had the following exchange:

Jeremy: All done.
Ant: Ok, let’s go.
Jeremy: Daddy, don’t wipe my butt-butt.
Ant: Ok, how come?
Jeremy: Because it hurts.
Ant: Oh ok.  I won’t, because you only went #1.
Jeremy: Daddy, you can wipe pee-pee.
Ant: OK, I’ll wipe the pee-pee. But if you go poo-poo later, I’ll have to wipe your butt-butt.
Jeremy: Don’t wipe it fast, Daddy. It hurt.
Ant: Oh ok, do you want me to wipe it slowly.
Jeremy: Yeah, slowly.

We love this kid.

There are so many items of praise throughout the day.  Here are just a few:

• the dressing change today did not cause Jeremy too much irritation or pain
• God gave the nurses and doctors wisdom in choosing the right combination of dressing materials to prevent further irritation or allergic reaction
• Jeremy’s counts are climbing up after having been down for two weeks
• Jeremy has been fever free
• Jeremy has been eating
• our families are extremely supportive and provide meals 7 days a week
• all of our family and friends and friends of friends praying for Jeremy

Please continue to pray (new 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 the regenerating bone marrow would produce only good white blood cells, red blood cells, and platelets
• that the bone marrow aspirate at the end of this first block of treatment would show no leukemia cells (that Jeremy would be in remission)
• that we would not see any more fevers for the duration of Jeremy’s recovery
• that God would manage the fevers we’ve encountered
• that the additional antibiotics for the fevers would not cause any kidney damage
• that Jeremy’s appetite would continue to improve so we can avoid giving him nutrients through the IV
• that the rash under the dressing on his central line site would go away and that it is not a result of infection
• that the rash caused by Jeremy’s fever would settle down and fade and not cause Jeremy too much irritation
• that the brief exposure of the central line site when Jeremy scratched it off in his sleep would not cause any infection
• that the irritation from the previous dressing would subside
• that the current dressing would not cause any allergic reaction
• that God would continue to give Jeremy an extra portion of His strength, so Jeremy would continue being his playful, energetic self.
• for safety for Jeremy, since he is so playful in such a confined place with such low platelet counts