Day 5 of Lochlan’s battle with acute lymphoblastic leukemia…
The small mercies that we are grateful for:
• 72+ hours fever free and so we’re officially off the blanket antibiotics that he had be receiving four times a day for the past 10 days
• so far no nausea or big issues from the chemo
• continued kindness from the medical team here
The days just feel so long for us all. Getting outside for a break is much needed but short lived— he can only be off his iv for so long. It’s a wild change to go from limited screen time to all the screen time her can get and then some. Having Mitch here has been such a blessing but he goes home tomorrow afternoon again to be with Luke.
The hardest part of this whole thing is feeling completely helpless and out of control. I am a doer. I am a planner. And I can’t do anything, or plan anything because Lochlan’s entire treatment plan (and ultimately our ability to get back home) depends on how he feels and responds to the meds/chemo over the next couple of days. Again, it’s one huge waiting game.
I try my best to keep things light and upbeat without being annoying or unrealistic for him. But after he goes to sleep I have my daily cry —only for 15 minutes a day where I allow myself to think of how…
• unfair this feels
• the guilt I feel
• how disappointed I am for him
• hurt and angry I am for him
• etc.
I allow myself to recognize those emotions for a few minutes each day, but I refuse to wallow in the negative feelings and thoughts as they don’t help anyone. It is all so big so I try my best to compartmentalize this journey into smaller little blocks. One step at a time, continues to be my mantra.
If I could ask you to continue to pray for us, I would be so grateful. Specially that Lochlan’s fever stays away, that his counts remain low, and that he will see progress in the reduction of his neuropathic foot pain — as these few factors will help decide our departure date.
Jeremiah 33:6 💙🙏💙
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