It has been a long week. The treatment itself we were prepared to handle, but it is the around the clock restlessness, that there is no preparing for. Monday was his best night, which is saying something since he still woke up at least three times during the night. Tuesday was a downhill slope with him either just waking up throughout the night or being constantly restless. Wednesday he did not sleep at all! It was miserable for everyone; us, Clayton, our roommate, everyone. Thursday was no better. None. By this point we were all sleep deprived and grouchy. The days and nights all just sucked. The best part was that our roommate was discharged so we no longer had to feel bad for Clayton's 24 hour restlessness and any commotion it was causing. We tried desperately to adjust medicines to try and find a better combination for Clayton, but medication is not one size fits all, so figuring that out is a pain! A pain I tell you! At the end of the day we were too exhausted and irritated for the trial and error process and just wanted a solution...that of course would be to easy.
Friday came and we got another roommate this time a one year old. Our room wasn't exactly peaceful before, but any sliver of peace that had remained was officially gone now...and then the mom was coughing, which made me feel just great. The last thing we need is to get sick. They have rules if the child is sick, and it is OK if a parent is sick and the child has a private room; the parent can just wear a mask around. But what do you do when the parent is sick and they share a room with another family? All I can say is the hospital should be glad that they paired them with us and not the family next door because that mother would be causing a stir. She would raise cane now if she even knew there was a sick person living next door to her child. It is a very touchy thing to have a sick person around children with cancer. There are some moms that will go wild. It is never good for these kids to be sick going through all these treatments, but it is of course a much bigger deal if you are dealing with a neutropenic child. Thankfully, we aren't neutropenic, we just don't have time to get sick. Getting sick can mean respiratory complications for a healthy child. Respiratory complications can in turn prevent a child from being sedated for scans that are due; which would mean scans would have to be postponed...kind of like the scans we are doing the week of the 15th. You see where I'm going with this? With cancer and the schedules it requires, everything is a domino effect. I'm not going to go wild about somebody being sick unless Clayton is neutropenic, but I do think it's rude to expose your sick germs to this environment. It is a courtesy to make people aware that you are sick and take the proper precautions. It's just the world we live in.
Anyhow, we are done with the inpatient high dose 3f8, so all future 3f8 treatments will be outpatient and just the standard dose. Yay! The 3f8 nurses, the neuroblastoma doctors, George and myself all believe that Clayton will most likely be HAMA positive again, so his next treatment will be postponed. We'll see.
Just waiting to get discharged tomorrow. We tried to argue our case to get discharged tonight, but no luck. We didn't really figure we would get anywhere, but it was worth a shot.
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