Hello Friends,
I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family.
Although she’s still doing well overall, we’ve had a bit of a detour this last couple of weeks. Her ANC (basically, her immunity measured in blood cells) was rising to slightly beyond protocol. The docs like to keep her counts between 500-1500 during Maintenance Therapy, to ensure that the leukemia doesn’t have a chance to come back. Lu’s ANC was climbing into the 1600, then 1700’s. To counteract this, they upped her chemo dose by 25%. Unfortunately, this made her nauseous, and she started vomiting again Ugh, just pulling out the ol’ puke buckets made us feel a bit sick too. We added some more anti-nausea medicine to her regimine, which mostly did the trick.
But then we discovered that her ANC had been knocked down WAY too far. The week of her 6th birthday, she had her usual in-patient spinal tap and IV chemo where they also check her bloodwork. Her ANC was down to the low 100’s. This basically meant she’s on lockdown until her counts rise. She had been looking forward to, and talking about, her birthday party at Chuck E. Cheese for, oh, the last 6 months? Some of the docs and nurses said we could probably go ahead with the party, weighing out the costs/benefits. My gut told me not to, as disappointed as I knew she would be. I couldn’t feel good about her having a fun party, but possibly ending up in the hospital the week after.
Bonnie and the nurses brought a cake and presents to her in clinic, which at least felt like a bit of a celebration. We also decided to make a quick trip to her school, after I had her teacher promise to flea-dip the kids in antibacterial gel. We brought rainbow-colored cupcakes, and her class was beyond precious (see silly faces pic below)! We couldn’t be luckier to have her teacher and school on our side. They’ve been incredibly loving, patient and flexible with our ever-changing circumstance.
Lulu was more understanding than I ever would have guessed she’d be about missing her birthday party, but we were still so disappointed for her. Her counts ended up not rising as expected, and the week after she was only in the low 200’s. At least we knew we had made the right call to cancel her party. This meant we’d also have to forgo Thanksgiving with friends. But we made the best of it, instead, staying home and eating Jimmy’s delicious chicken with prosciutto over pasta. YUM! We reminded ourselves of last year, when we spent every single holiday in the hospital, and counted our blessings to be together in our home this year.
Her OCD – like behavior continues to be an issue, and we’re doing our best with that with what we know and are learning. It can be VERY trying sometimes and we try to keep our patience.
Max is continuing to excel in school and sports. Luckily, he’s been staying healthy. That is, until one Monday morning … Suffice it to say I was taken unawares when my son became suddenly ill on the way to school. Well, he did tell me he didn’t feel well in the morning, but I pretty much told him to suck it up, eat some breakfast and get to school. I regretted those words wholeheartedly a few minutes later. After ALL the puke I’ve dealt with over the past year, you’d think I’d have emergency bins in the car. I used to, and still bring them when Lulu has to travel, but my son is never sick! He gets a bit carsick, but never actually GETS sick in the car, so when he told me he still felt icky in his tummy I continued to chalk it up to a little nausea.
Then, it began … The best way I can describe it, is that he threw up like a boy. It just came out without any focus or finesse. Lulu gives me just the right amount of warning, and we’ve never missed the bucket. Max just exploded all over. It hit his chest first, then all over his lap into the crook of his legs, which spilled between and under his butt and onto my back seat. There was nowhere to pull over, so I told him to try to find something to throw up into. Onto his shoes it went, and I started yelling “open the window, and puke out the window!!!”. He faced the window, and full on puked into it, while it was still rolled up. Into the crack of the window and the door it went, dribbling onto the floor. He finally started unrolling the window, but the damn back seats have the childproof windows that only roll down halfway, so more volcanic eruptions onto the side of the window. I finally pulled over to a closed gas station, where I got him out and started dry heaving myself, as the smell of him wafted up and overwhelmed me. I’m sure it was quite a site for the passers by. And not a wet wipe or a kleenex to be found.
Luckily, it was just a 24 hour flu, but I now feel like I’ve been on an episode of Sienfeld, as I will NEVUH get the smell out of my car, and may have to sell it!
In the scheme of things, these are such small trials. Jimmy and I are so grateful to continue on the work path, and working on finding some quality time together as well. I’m heading back into doing more photo shoots as my consulting job ebbs for the time being. Jimmy’s working from home for the holidays and I can’t wait to put up the Christmas tree this year, to circle round it together and celebrate all of our health and good fortune. Even if there might be a puke bin hidden underneath the pine branches …
Love,
a.l.l. of us
