Thursday, December 10, 2015

The Cumulative Effect

Ruby has handled everything thrown at her so far with amazing energy and health. I know if it were me going through chemo and all of the transfusions, I'd have taken several 'sick days' from life by now, but our girl keeps on trucking. Sometime in the last round though, a few side effects of leukemia and the chemo have started to show up. This tends to happen as the patient's body experiences the cumulative effect of the chemotherapy over months.
  • Fatigue: This one is a no brainer. I'm fatigued and I'm not even getting all of the meds or waging a war inside of my body between sickness and chemo. Ruby is still very full of energy, but maybe half of her days find her with a dip in energy around 11:30. It may or may not pick up after she eats a snack or lunch. 
  • Vomiting: Ruby has yet to get sick on the chemo, and for that I'm so grateful. (Besides the draining effect it could have on her energy and nutrition, I worry that severe vomiting would deter her from wanting to eat or drink.) In the last month though, she has vomited small amounts several times. Usually it's within 30 minutes of eating, and it's never been a big amount or a big deal. Ruby doesn't seem bothered by it; the only way I'm aware of it is if I see it on her shirt or the ground next to her. It's almost like a a baby spitting up. At first I thought it was only a matter of her eating too much for what her stomach could currently handle. We started giving her smaller portions and that seems to help. She still has bouts of it occasionally, but it's not enough to affect her weight nor does it seem to bother her. For now, we are not medicating with Zofran.
  • Chemo-Induced Peripheral Neuropathy: Say that three times fast. Heck, I can't even say it once! Ruby seems to be having some balance issues. Where she was so steady on her feet prior to the chemo, recently she's been stumbling more, losing her balance and falling into walls or down to a sit position. Some of this could be fatigue; her muscles are too tired to do what she's asking of them. It could also be CIPN, which can manifest in pain or loss of feeling in hands and feet, and also muscle weakness and decreased reflexes. 
That last one is the one that gets me right now. Ruby is already battling against decreased muscle tone and the developmental delays that come along with that because of Down syndrome. We have spent countless hours since she was born working on PT (for gross motor things like walking and picking up objects) and OT (for fine motor things like pointing and using utensils). Now I'm seeing some of her skills that she's worked so hard for regress a little. It just makes me sad because, even with her two years of hard work allowing her to achieve milestones quicker than expected, her development is still behind her typical peers, and this new challenge just adds to that.

When we registered Ruby for preschool it was intentionally chosen so she could be around other two-year olds and rise to their level both with speech and physical movements. Between her missing so much school and the CIPN, it's hard to see any progress coming from our efforts; even when she does go to school, it tires her out so quickly. It makes me worry that she is falling further behind those in her class with each passing round.

Not a complete downer post though.....our girl is a hard-worker. For reals. So this just means she will have to keep that up. When Ruby is not hooked up to chemo, she and I are outside at the hospital, playing on playground equipment and climbing up stairs. When Ruby is at home, she is outside with Lehr and the kids, pushing herself on her bike and chasing the soccer ball. It's just standard operating procedure for us. As long as she can, we will keep that up

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