November 27, 2016

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Maintenance Day 597: So close

Eight days left. That’s it. Should be smooth sailing. But nothing can be that easy for us.

Scarlett started with loose stools on Tuesday or Wednesday. Right away, our hearts sank but Brock didn’t say anything to me and I didn’t say anything to him. Maybe we could will it away. Things stayed pretty much the same until Friday night. She woke up three times during the night to go potty. She cried for us each time. We thought we could wait until Monday. But Saturday morning we knew. Brock spent the morning on the phone with Dr. H, the lab, central scheduling, going to the hospital to pick up a stool specimen cup, collecting stool, bringing it back to the hospital and wiping bottoms. (What a great Daddy!). By 2:00 she had tested positive for cryptosporidium again.

The cryptosporidium from her last infection never went away. It stayed dormant in her body. She has had a cough since we left the hospital and I’ve been curious to know if it is crypto (it can settle in your lungs). When she took her last round of steroids, it weakened her immune system enough that the crypto reactivated and is wreaking havoc on her poor body again. Last night she was up five times to go potty. She is bleeding pretty profusely with each stooling. She is in pain as her intestines contract to try to get rid of the intruder. The only medications to help the pain are morphine and Benadryl. But both of those will make her sleep soundly enough that she won’t wake up to go potty. She is too proud to wear Pull Ups. Her Piggy seems to be helping. Warm baths help, too.

We immediately began treating with the Alinia. She will get almost three days before we check back in. At some point, I’m sure we will do another stool sample to see if it’s clear. Whether this takes a few days or a few weeks, we don’t know. We don’t know if she will be admitted. She is home for now, providing that she continues to eat and drink. (That is essentially what brought her in last time – she stopped eating and was going to get an NG tube). We are trying to keep life as normal as possible. Luckily, she already has the week off of school. She can stay home and relax and just work on getting better.

For the time being, she has discontinued her chemo meds. Whether she goes back on them, we don’t know. She only has nine doses left to take. Her “lasts” have been very anticlimactic. She won’t get her port out so she doesn’t even notice that her last IV chemo was her last. We didn’t know when we gave her her 6-MP on Friday that it may be her last dose.

I can’t tell you how Scarlett feels right now. I don’t know how much pain she’s in or what this is doing to her little body. But I can tell you that Brock and I were…traumatized, for lack of a better word, after her last hospitalization. We did not expect her to get so sick being so close to the end. We watched her blood pressure plummet and her heart rate sky rocket multiple times. We watched her pass huge blood clots. To experience that again would be awful. Just as we began planning and hoping for the end of treatment (we didn’t even ask what Scarlett’s end date was until September because we didn’t want to take one day for granted), we were knocked on our butts. It was like God saying, “haha, not so fast”. We finally planned her party after she was discharged and now we are blindsided again. I’ve watched this poor, innocent child go through so much. Multiple times a night, she sits on the potty for half an hour and nearly falls asleep with her head in my lap. Listening to her whimper breaks my heart.

Every day I feel like I can’t take any more. Then the next day comes and more bad things happen and I think I can’t take any more. The moments when I see her smile push me to keep going. People can say we are strong but we aren’t. We are weak and breaking inside. But we are parents. We have no choice but to smile and deal with the situation. Because she must. How can we give up when she keeps going? She is tired and weak some days but she smiles and laughs anyways. She guides us. We are weak but she is strong.

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