We had high hopes that we would get to leave the hospital today, but unfortunately his bloodwork from today wasn’t quite where it needed to be. His leukoblasts were 40 when we first were admitted, 21 last week, & down to 4 today, but they need to be zero before they release us. So the chemo he received yesterday, & the steroids he got last night, this morning, & tonight need to work their magic on the remaining bad guys. To say we were disappointed was an understatement. Lochlan said he felt “like my heart is sinking” 😞. But we also realize that we can’t rush this, & his body needs to work with the meds to make our release eventually here a successful one.
We did have a small win today though. After the trauma & fear he has from all the painful bandage & sticker removals he asked if I could be the one to take his bandaid off his back and not the doctors or nurses. So of course I did- warm wet facecloth & some lemon essential oil and it came off without him even flinching. Doesn’t sound like much but it was huge for him. He even gave me a high five when it was done. Tomorrow he needs to change his bandage for his picc line so fingers crossed I can work my magic again for him.
His appetite is ravenous. The steroids are responsible & his cravings are wild. Trying to find a little balance so he can satisfy those urges while still ensuring he’s consuming nutritious food is a little bit of a dance but we’re managing now that he is much more mobile.
He has chosen to go to bed at 5:15 the past few nights because “sleeping is better than being awake and not home” 😞
As for me, I just am trying to stay afloat & keep hold of my kiddo as we ride the wildest wave of our lives. It’s a weird numbness that just carries me, only to be randomly struck by sudden blows of profound sadness, disappointment and grief. I’m surprised I’m not angry with God. I am waiting for it, but it’s not coming. Instead I just have to lean into Him and have faith that this journey is for a reason.
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