Mommy's Time Out Magazine March 2017 - Page 22

I try SO HARD to keep my emotions in check in front of McKinley. She really has no idea what's going on with her besides her "blood is sick." All she knows right now in this moment is "mommy is crying". I honestly wasnt overreacting with this news of McKinley. But with all going on with Benji & Laura...My first PreB ALL "friend" that I met three days after our life was turned upside made it that much more intense. As much as I try to not compare stories & journeys you can't help but go there. Benji relapsed during a two & 1/2 week hold at 11 months into maintenance. Here we sat...three week hold at almost 12 months into maintenance. It's terrifying. Our life...our ACH family was ROCKED by Benjis relapse & his quick spiral. I got home & couldn't rest my mind all night. First thing the next day I called & asked if we could possibly get a blood check on Friday Feb 3rd just for "peace of mind" or to have an answer. The oncologist agreed (the nurse was reluctant in case her counts went down further...what then?) I didn't know but I wanted a blood draw. I found myself literally on my knees in my closet that Friday morning praying & crying. I hadn't been on my knees like this since they found that "recovery" blast back in October. It's a terrible defeating feeling. It was a VERY long morning after we went in for the lab draw. Casey came home from work to be there when they called (I had a terrible sinking pit in my stomach. Casey never comes home). Our sweet nurse called & the first words out of her mouth were "Karen, I don't have the chemo doses yet but she is restarting." I knew by that sentence...COUNTS RECOVERED. I literally was bawling. Thank you God. NO blasts & rising counts. She was starting back on oral chemo verrrrryyyy slowly.

Two days later (Sunday Feb 5th) she woke up & mentioned her ear. She never complains. Called the on call dr & off to the ED we went. No fever & counts still high but she had a very bad ear infection. She fought this ear infection for a while & cant seem to get rid of this lingering congestion & cough. Fast forward to Tuesday Feb 21st in clinic. Counts are still good (high in fact) so she is on 50% of one oral chemo & 75% of the other. But still congested. To "rule out" rhinovirus they reswabbed her so that we could possibly treat this as allergies. In the meantime they checked her ears (an oncologist & a resident) & they both thought she had a perforated eardrum {sigh}. I mean she really can not catch a break. A quick call to an ENT from our Onc & a 5:00pm appt later we were at the ENT. Moments before walking in my phone was clinic. "We have your swab but you're not gonna like it. Positive for rhinovirus, Enterovirus & Influenza B." WHAT? Granted...the first two are "colds" but she's still testing positive for Influenza B?! I guess this isn't abnormal. The virus can shed for weeks (first positive with symptoms was Jan 10) & she's not symptomatic with the flu so infectious disease advises to not reswab but we were testing for rhinovirus. However, yet another virus. At the ENT appt he said she has a perfect ear. It did present as perforated but after more extensive testing/instruments all is good! I haven't fully decided about a lot of things but they advised we keep her out of school another 4 weeks (she hasn't been a full day since Dec 19th) but are encouraging me to let her return after that...I'm just not sure quite yet. The selfish part of me wants every minute with her God forbid anything happen but the other part of me knows how much she adores school, her teacher & friends & im so thankful for that. They want her sinuses dried up & on higher chemo. They also are checking her immunoglobulin levels again next week. Maybe the last donor didn't have good antibodies & she needs another transfusion. At this point I'm not sure what I want...but I do know I want & pray for a healthy little girl.

Thank you all for your continued support & prayer. Karen Spencer Moore