All Bets Are Off Now... but I still want to care.

Today I'm feeling annoyed, so excuse my rant, but its been a long day...

I am finally starting to feel better. I went to urgent care Saturday morning to look into the cause of my fever and body aches. I tried to see my doctor last week, but it was 4:30 when I called and they close at 5, so he wanted me to go to the ER. (I'm sorry my daughter's radiation and chemo inconveniences his time schedule. I was not about to leave her now to sit in an ER while she's at home getting sick without me.) He has sent me to the ER the past 3 times I have called him and I have waited for hours, paid $200 each time, been misdiagnosed every time, been prescribed unnecessary meds, and been told to follow up with my doctor the next day who never has appts and I have to see his PA. Is it just me or are ERs not supposed to be used as doctor's offices?! It is an absolute crime that we live in a city this big and the only medical care available after 6pm is the ER!! Anyway, I went on Saturday morning to urgent care and they ordered a CBC, but guess what their machine doesn't work anymore so they send their labs out and you get them next Tuesday- what?!

The doctor put me on antibiotics anyway because of Julia. Another reminder that everything is now different. So much for avoiding unnecessary antibiotics... Hearing all the doctors and nurses in there talk about her case just made me cry all over again. So I filled my prescription and spent the entire weekend in bed healing. It seems to be working and in the end we'll probably find out it was a virus.

Julia had her VCUG this morning to check on her urinary function in the remaining kidney. Dr. Hodges wanted her sedated if possible to save her the experience. I tried to get it arranged with no luck- 2 procedures is too long. The xray lady just kept saying we don't do that for this procedure. We arrived this morning and they started right away. It was horrible. They take off all their clothes, strap them to a board the width of a balance beam- with velcro straps from shoulders to hips. Then they catheterize them and pump their bladder with 2 bottles of contrast dye. Then they rotate the board back and forth for the next 20 minutes taking pictures. She screamed through the entire thing. Then they want them to empty their bladder on the table to be able to take pictures at the same time. So they tell you to help them relax so they will go, but the only thing you can do is talk to them and touch their head while they're strapped to a board under a moving machine 5 inches from their body. It was the longest 45 min. It was so hard not to cry, but I didn't want to upset her. I just pray she has no real trauma from it all and that God erases it from her memory. It makes me sick that they could sedate kids or at least give them something to calm them, but they don't because this is faster and easier. It was by far the most traumatic thing she's been through so far.

It just really hit me today how much changes when you have cancer. All the things that used to be a big deal and important no longer really matter. It suddenly trumps everything else. We used to worry about giving her meds and in what combination. Now they just give her whatever. She can have as much zofran as it takes to stop throwing up. It doesn't matter what other drugs she's on before we give her something. The chemo she gets weekly is toxic anyway. What's a few more xrays? she has dozens more ahead of her anyway.

Mason's mom and I were talking about sedation. We both remember when that used to be a big deal. When a healthy child is sedated, they get their vitals checked, they're on monitors, they are given a post procedure checklist, they are kept under observation until they are fully awake. None of that matters when your kid has cancer because they're doing it anyway. They do it day after day if needed. And depriving your kid of food and water for 15 hours every day is suddenly not a big deal to anyone. Dr. Sam wasn't there today, so his boss did her sedation. He gave her twice what she needs (because he went on weight, not notes and experience). They ended up sending her home with me- still sedated! Once they get one intentional movement from the kid, they're out the door, off to the next case- and the nurses say goodbye. So I drive her home monitoring her breathing the whole way. She didn't wake up for another 25 minutes. I just want to be normal again.

And seeing poor Mason so sick, neutropenic, and no extra precautions taken. They don't say much about it because I think most parents don't follow them or don't understand enough English to really know what to do. So much of what you learn to do is from reading, not from anyone telling us. I guess its true though what they say... It's going to happen anyway, you can't really prevent it.

Today the anesthesia nurse was talking about her hair. I don't know why they insist on doing this. The radiation nurse was saying how much she loved the curls and asking if it would come back that way. She said no, probably not- it comes back straight in most kids. Then she said we'll all just be so happy she has hair again it won't matter. Well, you know what it will matter to us, in a small way, but it will matter. I'm tired of people saying stuff doesn't matter!

Once cancer is the big deal, nothing else really counts anymore. I just want to still care, but it starts to feel like you can't care about anything really- just have to ride out and take whatever happens. Right now it really stinks.

Tomorrow we go back to the urologist for the results from today's test. Please pray everything is normal and healthy and no more tests. Her next dose of chemo will actually not be until Monday now. The next drug is the strong one and she needs to wait a full week from the end of radiation before she can start it. We are very thankful to have completed radiation now. They actually gave her a graduation certificate today and were very sad to say goodbye to her.