I’m writing tonight with hopes of rallying some extra prayers, healing light, love, and some dragon’s strength for Maya. I continue to try and see…feel… “the easy part” of Maintenance that the doctors and nurses all have alluded to over the past 11 months. Yet here I am writing with fear tonight in the third month of Maintenance; we are due to close the first 84 day cycle of Maintenance tomorrow and start with day 1 of the second cycle Wednesday. This is pending now since we actually need to go see the doctor tomorrow. Though the new hematologist/oncologist, Dr. Zucker, has been kept abreast of Maya’s situation and he likely has been scouring her chart, tomorrow will be our first day as his patient. I wish it was for a less eager appointment.
Scott wrote a necessary post about our trials lately and I (once again) apologize for keeping quiet when I know people want to stay up to date. It is difficult when people ask “how is Maya doing?” and I can’t say “oh you know, she’s doing really well, thank you”. Truth is, Maya has not been great the last couple of weeks. She has been extremely constipated with very light stools that need assistance with passing. The poor child has had poop pulled from her bum too many times and now a fissure is contributing to so much pain…and withholding…cuz she is four. I’m sorry if that is too much information but it had to be said. It was traumatizing for all involved and I am certain I cannot drink enough scotch to make that memory fade. Not just the action of pulling matter from a bum…but the yelling, the coaxing, the begging, the crying, the threatening, the pleading, the whispering, the trauma. I hope she, as well as little Lincoln, don’t remember this part clearly for it is painful physically and emotionally. But we love her with every cell and will do anything to make her feel better.
While her constipation has been her most significant ailment, she has also been quite lethargic, nauseous each morning, some vomiting, belly pain and today… we see yellow. Mostly in her eyes, under the tongue, and even her skin a bit. I know 6mp and vincristine can deplete liver function but this is really freaking us out. I can handle the laundry every morning from vomit soaked towels. I can handle looking at her on the couch all day. I can give her tylenol for her pain. I cannot handle seeing jaundice. I just can’t because I know the implications too well.
I have heard other cancer families (on Facebook blogs) talk about how the possibility of holding meds/chemo due to liver enzymes being too elevated. I am guessing that might be in our deck of cards. Dr. Salo said that (for whatever reasons) it is very common for the child to “crash” the first three months of Maintenance. Scott and I had no idea it would be in this way since usually her ANC is the most stress ridden lab value. It seems like with each month the symptoms of roid rage and appetite from Decadron come on quicker and linger longer and now with the jaundice creeping in….I am terrified of permanent damage to her organs. I know the liver is an incredible and resilient organ but…well it’s hard for me to “see clearly” these days. It is hard to imagine our stress level being higher than it was during induction but both Scott and I are feeling like we are swimming in anxiety. Even DI was more smooth than this and we injected chemo in our own child. Prior to Maintenance she was actually happy most days. Now…I miss her genuine smile with all my heart.
Motherly Assessment: I’m scared. She’s not terribly yellow but the corners of her eyes are no longer the straight white I am used to looking at. She is finally pooping thanks to the aggressive bowel care of Miralax twice a day, colace once a day, 5 oz of prune juice, aloe vera juice, high fiber diet and at least 35 oz of water. She feels pretty crappy. I’m not a doctor. I am also trying not to be a clinician since this scares the shit out of me. But….I’m guessing her liver is “mucked” up and her bile is not excreting enough to help with stooling. Our bile help make our poop brown and softer. Because of the shift between light and brown stool I’m also guessing it isn’t permanent damage yet. Tomorrow we will get to see labs. We will look to see if her liver enzymes are elevated and her bilirubin is high. If they are high enough, a halt on chemo will be initiated for a pulse of time.
I know I am strong but right now I am also a very stressed, fearful, and almost broken mommy. Thank you for the letting me vent and I truly apologize that any anxiety that might seep into other lives. I have such dear, close, and soul connected friends/family that I know you feel it too…
Love is life…
Stay strong, family, through these incredibly tough times! Love and light being channeled direct to Maya the Dragon, from our family to yours. All our love, light and strength, wishes for ongoing positivity and continual unity of that incredible enduring spirit you’ve all created, Brianne, Billy, Jemma; even our doggie Boji is sending prayers!
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