Another Day in the Life...
Hi again! Thank you all for the comments on my last post. I appreciate all of the encouragement, and I also appreciate that the drug discussion was opened up. I would be very surprised if everyone out there agreed with me. I've come to realize how personal this issue is for people, and it is compounded even further when children are involved. I have watched so many parents around me struggle with the daily ins and outs of their child's care during cancer, and I've come to believe that we each must simply do the best we can with what we have and what we know in each moment. Every child and family is different, and I know that one formula will not work across the board for all. Truly the only thing that we have in common as parents is that we know our own child. I do welcome discussion about it because the best thing that we can do is to pay attention and think. The more engaged my brain is on this issue, the clearer I can think to make decisions. Every day I feel the pull of the current - it would be so much easier to get swept up in it all and just let what happens happen. Never question, never give input and observations, go with the drugs even when my instincts may point to the contrary... Every day I struggle with the feelings of wanting to stop trying so hard; thinking so hard. Because the truth is - drugs are easy. I don't think that drugs are evil. So many people's lives have been saved through the use of drugs. I do get that. And believe me, I have found myself THANKFUL many times already for the effects of some medications. (My favorite being the one used to knock Ellie out for the bone marrow biopsies!) But the other side of the coin is that I have seen Ellie (and others) also suffer reactions to drugs. My position is not to reject every drug - it is to question every one. It is the questioning that is exhausting.
Ellie had her first dose of radiation this morning. She cried a little on the table because she was afraid and because the mask that covers her head and holds it still is tight and hurts her bald head in a couple of places. John is so good at calming her, but he had to leave the room during the radiation. He watched her on a monitor right outside the room the whole time. It only took about 15 minutes. Yesterday the set up x-rays took much longer and were way more traumatic than the actual radiation. She then had another dose this afternoon. Since John had already left for Florida, I had to take his place. Ellie did great! John got her through the hard part. She knew what to expect, so she just popped right up on the table and didn't move a muscle the entire time. I was so proud of her. She was all smiles when they let her out of the mask. She will get radiation to her head twice a day for 4 more days. I had a harder time than I expected to. It is just hard to watch her held down on a table and to have to trust that everyone knows what they're doing and that these rays being fired at her head will be done precisely where they should be. It was just unnerving. This radiation will be to the tumor in her head as well as the bones around her orbits and also her skull. The radiation to the skull is done very shallow - it will not penetrate into her brain. (Or so they tell me... difficult to remember when watching her face covered in a plastic mask with marker lines all over it.)
Ellie in her mask this morning - all set for her first treatment:
Ellie also hasn't been eating well and it's been difficult to get enough fluids in her since returning from the hospital. Today we came to the Day Hospital between radiation appointments and she was able to get fluids and a platelet transfusion. Her platelet count was 8 today! She bumped her arm on the door jam last night and it bruised and swole up with an egg sized knot. We also found out today that her white count is ZERO. This is the point after chemo when Ellie tends to feel the worst - just down and tired and overall blah. So the fluids were a welcome relief. She has a high probablility of landing back in the hospital with a fever over the next few days because of the low counts. So we go day by day... We shall see what tomorrow brings. I will let you know. Thank you all for standing with us and holding us up each day. It makes all the difference in the world!