July 25, 2016

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Maintenance Day 473: The Sickies

This summer, our sister-in-law and our niece and nephews are coming for two months! We are so excited to see them for the first time since August. So much has changed. Our youngest nephew has learned to walk and talk, we missed three of their birthdays and they missed three of ours. Scarlett has grown and thrived. So we invited our sister-in-law to come to Scarlett’s appointment. She has never met the doctors or seen the hospital. It was a special day for her to spend with just Scarlett.

We spent a lot of time with Child Life talking about fundraisers and events coming up. We talked about the best way to make families aware of the new Facebook page we started. We talked about the opportunities that being a new Children’s Hospital would bring. Then we talked to Dr. B about Scarlett’s need for physical therapy. Scarlett’s labs came back looking well enough to increase her doses back to 100%. Almost exactly one year after cutting them to 50%, we are back at full dose. Her ANC was a little troubling because it was TOO high. Her new dose should take care of that. All looked well!

As soon as we got home, Auntie M called. She and her kids had been exposed to hand/foot/mouth. That meant that Scarlett now had as well. The first symptom is a fever. So I began to plan for the week ahead. I don’t want there to be a last minute situation of who is going to take care of the kids if I can’t leave work, Brock has to take Scarlett and then Tate and Evie are stranded. Unfortunately, all of our family had been over to visit the cousins already so everyone was exposed. The situation got even more complicated when Tate was diagnosed with strep throat the next day.

Having an immunocompromised child is not easy. It’s not just saying “they might get sick”. A fever is big deal. Even if you are certain that you know the cause, you still have to go through the tests to be absolutely sure you know what the answer is. The port in her chest provides easier access when giving medications but it is also highly dangerous. The port has a tube that leads directly to Scarlett’s heart. An infection in there would very quickly and completely bring all of that bacteria straight to her heart. A fever is the first sign of infection. A simple dose of Tylenol for most kids is not allowed in cancer kids. It can mess with her labs and, as bad as that fever is, it tells us that she is sick. We want that fever to be a bright flashing light. A fever over 100* means that we have to immediately call her doctor and she has to be to the hospital within one hour. Since we have a 45 minute drive, we have 15 minutes to pack some clothes and get in the car. Knowing who is around our neighborhood every day is a necessity, in case we need to leave that quickly. In addition to all of that, a fever means an automatic 48 hour hospital stay. She cannot be discharged until her fever has been gone for 48 hours. It is a lot of work to plan who will care for everyone, where they will go, how they will get to school (if needed)…

It’s not possible to avoid infection completely. We cannot live cooped up in our house every day for another six months. Even if we did, you still can’t prevent everything. But we try to plan as much as we can. Every cough is assessed regularly, every headache is asked about until we get one of our own, every cut is checked, every visit to friends/family is preceded by “is anyone sick?” It’s a nerve wracking way to live life. It’s difficult for people on the outside to understand how much work, anxiety and stress goes into a hospital stay.

We were lucky this month. Scarlett had a blister on her hand one day and I started looking for babysitters. As my sister said “Scarlett’s not the type of kid to get a blister from working too hard”. It went away with no other symptoms. Scarlett was the only one of our kids to not get strep. Her doctor has told us that it’s a common thing to see siblings pass something around and the chemo kiddo gets passed up. We will take that!

It has been 12 months since Scarlett has been admitted. She has changed a lot since then. She knows now that it’s not normal to be staying in the hospital. She doesn’t want to go to her appointments anymore. She has started asking more questions about her port. I don’t know what a hospital stay would be like now. Would she still cooperate? Would she cry? Would she sleep through all the beeping, buzzing, poking, prodding? I hope that we don’t have to find out.

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