February 25, 2015

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Delayed Intensification Day 23: Time

I think that for all cancer families, from the moment of diagnosis, time is a valued commodity. Time flies by because you have absolutely not a moment to think about it. It is a 24 hour job to be a caretaker on top of being a mom. But at the same time, time stands still. Our lives have been on hold. We have had a lot of plans that we have forgotten about and put aside because we can’t be in public. This time will, God willing, give us more time together in the end.

It is difficult to plan for anything. We cannot plan even a day ahead because, it inevitably seems that when we do, a fever pops up. We try to take little “pauses”. A day here to snuggle and watch movies. Or an afternoon to have mommy/Evie time. We try to cherish every moment. I try to take mental pictures so I don’t forget anything.

We don’t take the time to cry very often. It doesn’t help anything and it just makes me tired. But there are moments of weakness and frustration when that’s all you can do. It’s days like this when I just need to cry. It’s so frustrating to be scared out of your mind over three stupid little numbers. 101. The temperature that warrants an automatic admit. I brought Scarlett in last night for a straight admit when her temp reached 101.7. They accessed her (without numbing cream!) and started antibiotics right away. After all her vitals and IVs were started they gave her Tylenol. Within an hour or two, her fever was gone. Hooray! This morning, her cultures weren’t showing any signs of infection, her fever hadn’t returned, but her ANC was very low (37). And it had gone down from the day before. In order to be discharged, she must be fever free for 48 hours, no infection, and ANC rising. It’s that “ANC rising” part that gets us every time. She is far more likely to take two steps forward, one step back. So now we wait and hope for higher higher higher! Only time will tell.

We are never guaranteed another day but cancer families realize this more than anyone. Time is the most precious gift. I feel guilty beyond belief every time I leave for work. That feeling is amplified every time I leave her at the hospital. I just want to spend every moment with my family.

Brock and I have decided from the very beginning that we had to make the sacrifices that we had make to get Scarlett and our family as a whole through this journey. At the same time, we have decided to make time a reward and celebration for getting to maintenance. Our families have been incredibly supportive and generous. We have decided to attempt to travel to Florida in May to spend time together as a family. Our goal is to just relax, play and enjoy each other with no “pokes”, appointments, and time apart for six days. We are going to fill those days with hugs, kisses, swimming and time together. It’s a moment that we have been saving for, planning for, and waiting for. I can’t wait!

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