Mommy's Time Out Magazine March 2017 - Page 21

We returned to clinic Jan 24th to check counts to see if she could restart oral chemo. No. She had been up and down all night fighting {yet another} low grade fever but never that "magic" 100.4 number where we have to go in. I told the nurses that morning "I'm sure we'll be back in ED later." Well, she woke from her nap with a 101 fever and to the ED we went. Counts I knew were low so I planned on being admitted. We were. Since she also was still testing positive for Influenza B we were on isolation as well. These holds were killing me. At this point we were on week 2. We've never been held longer than one week. I didn't have many answers & had been a bit (ok a lot) of a mess but after talking to the NP and an oncologist on rounds I was feeling *some* better. She's clearly sick with a virus of something (snotty, cough, etc) so THAT is what is causing the low counts...nothing else. {I'm praying that}. Yes influenza B was still positive but it can takes weeks to shed especially in an immune compromised child. She was given a chest X-ray to make sure this wasn't pneumonia (which it wasn't) & she was given another immunoglobulin infusion (IVIG)...it's a blood product used to boost the immune system. This was our shortest hospital stay yet...only two nights. We got to go home.

Tuesday Jan 31 we returned to clinic. They had made a prescription change while we were inpatient to remove her from a prophylactic antibiotic (to protect her against pneumonia) that she takes on the weekends {the pink medicine as McKinley calls it} which can *sometimes* cause low counts. So instead of this oral medication we had to have an inhaled one (that was fun). She (well....we) had to sit in this tent thing and she had a gigantic mask on her face (the girl that won't/refuses to wear masks even when having her port accessed). It took a lot of bribery and convincing but she did it. She will have to have this new medication once a month but if it helps with getting her counts back on track then we'll do whatever it takes. After that we had our clinic appointment. Still.After a few tears & my many questions the oncologist in the most polite way

possible said that if at week 4 (the following week) she was still on hold (meaning low counts) the "Leukemia team would get together and discuss about a bone marrow aspirate". What that means is they are looking to see if the Leukemia had returned. {cue tears}. on.hold. I left that appointment a MESS. This was Tuesday. On this day I left clinic & ran into Benji's dad & brother. This day was the day Laura wrote (for those that have been following my posts or her blog) about comfort & pain measures vs curing the disease. Her Benji with Pre-B ALL was dying. My "go to" with questions, my "look ahead" in this protocol/disease. I couldn't believe what I read that morning. I gave Benji's dad a very quick hug...asked him to do the same to Laura & we left. I completely lost it in the car