This afternoon we started our sixth and final round of chemo. I'm a little nervous because we are doing a different chemo cocktail than ever before so we aren't sure how he'll react. We are also giving it at 100% strength. Remember, "protocol" said we had to reduce his chemo strength to 50% because his counts were down for so long after the fourth round. Well, these doctors don't do reduced strength chemo. So back up we go, with two meds he has had before and a third new med. This is usually the round that would give him mucusitis, but the drug that causes that is the one we are replacing with the new med. The doctors here like to use this new med from time to time and George and I like the idea of keeping those pesky cancer cells on their toes. It's kind of like giving it the old one-two punch...but wait...here comes the third hit you weren't expecting so it knocks you off your feet. Pitiful metaphor, but whatever works.
Then there are our roomates...The child is upset a lot...a lot, a lot. On the one hand it's difficult to live with, but on the other hand it's sad. We know he's upset, but we have no idea what the phrases he says over and over mean. He seems to rotate through three or four phrases. I've caught his mother telling the nurses that he's in pain and that he starts panicking and complains he hurts all over. I also found out their Greek and they are from Athens. All in all the roommate thing is not easy. In the PICU, there is always noise so even when folks are sleeping you don't feel bad about making noise. In our current situation, if our roomies are sleeping, you could hear a pin drop. Thankfully, everything we should have to come here for after this should be out patient.
Thank you, thank you, thank you! I'm so over hospitals its ridiculous.
**I'm about to vent so feel free to skip over this part**
Everything is wearing on us, from the big stuff to the little stuff like the physical therapist telling us we should do out patient PT when we get home to help Clayton sit up good and keep his scoliosis from getting worse. Seriously? Where is captain obvious when you need him?
Dear Physical Therapist we saw today:
1. Clayton isn't "sitting up good" because he's been in bed for more than a week and he's being lazy.
2. This is what he does in the hospital; he lays down because he doesn't feel good and he's depressed. Take him home and he's a different child all together. When we tell you that, listen.
3. Don't speak to me about my child's scoliosis. We have a spectacular orthopedic surgeon who has a handle on things and your opinion is not needed and sure as hec isn't wanted.
4. We are here for cancer treatment and surgery. If it doesn't have to do with cancer or surgery recovery then it isn't your business, so buzz off.
5. George and I do not have time and will not ask off work for unnecessary PT. You are diluted if you think we would.
6. You don't know what your talking about and trying to act like you do is not an attractive quality.
7. You are welcome to "work" with my son while we are here. Beyond that, don't get pushy with me. It doesn't go over very well.
8. If there are any health concerns with my child, rest assured I am aware of them. But right now I am focused on the only one that is threatening his life...CANCER...not scoliosis. So don't try to sell me on $&@? that isn't important to his battle with cancer. I've got this, so BACK OFF!!!
**I think I'm done. Sorry about that**
On a bright note, we booked our flight to come home! Monday we will be home once again! (Unless God forbid something happens...) We obviously had expected to come home much sooner (us being naive), but in reality we can't come home until the surgeon discharges us. Since the surgeon was not going to be discharging us for a few days, we went ahead and started chemo while we're already here. Had it been another surgeon, I might have questioned making us stay this long, but when it is the best in the world you just shut up and do what he says. See, I'm not completely rebellious; there is a method to my rebellion. If I question a doctor's moves there is a good reason.
Random bits:
Zoey finally got extubated yesterday and she's working hard to stay that way right now. Keep her in your prayers.
Clayton has started growing back some of the hair he lost. He is growing it back on his head, arms and legs :)
(see below)
And here are pics of our room now...
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