the day to day

happy to report that our LO is pretty much back to his normal happy self. it’s so fun to see him laughing so much and smiling again. happy baby = happy mommy. he is slowly starting to lose his hair – can’t really tell so much from the front, but from the back where he sleeps. also, we see bits of his hair in his crib and on his blankets. eventually, he will lose all of it. i can’t imagine what he’ll look like without hair – he has so much of it! luckily, it will grow back after he’s all finished with chemo. besides that, there’s actually a whole lot we have to do that i never realized before:

  • flush out his central line twice a day (photo above of his permanent central line)
  • filgrastim injections every day to help with the white blood cell count
  • bactrim three times a week. this helps with infections, more preventive since his blood count drops after chemo
  • anti-nausea medication every 8 hours after chemo, and then as needed
  • tylenol as needed because some of the medications cause headaches
  • various diaper rash creams and a yeast infection cream because the chemo gave him a diaper rash. Also can I just say that I had no idea how much a diaper rash can cause pain and fussiness and the baby?!
  • thermometer because we have to check his temperature before we give him tylenol
  • lots of gloves, masks, gauze, alcohol pads to keep all of the above sterile
  • visiting nurse comes to change his dressing, draw blood, and other things as needed
  • weekly visits to clinic

never thought i’d have to give my son injections. this is coming from someone who has to close her eyes to get her own injections and who makes her husband hold baby while he gets his. luckily, the needle is so thin and i get to ice his juicy thigh before sticking him. he just cries out once or twice and then stops. my brave boy.

it’s crazy to think about how much we have to learn and even do on our own. they teach you this while your son is getting chemo and while you’ve been sleep-deprived for the last two days. they do a demonstration, shove all these pamphlets and binders, and discharge/medication instructions. it’s a lot to have to remember. some days i just feel so tired and spent, not like sleep deprived tired, but just tired, like from life.

also, when you try to google anything on infants and chemotherapy, it’s slim pickings out there. i come across very general things, and even those, a lot focused on kids, not infants. this is why i started this blog. for other parents out there who will have to go through this. it’s just helpful to know some of the expectations. i guess this is becoming the new norm, well at least until after his second round of chemo. am REALLLLLLLY really hoping and praying that J will only have to get two rounds. please pray with me on this! also, one of the lumps, the most obvious one near his groin softened and i can barely feel it!

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