I'm having a hard time writing this post. When we called this blog a roller-coaster ride, we had no idea what a roller-coaster it would be. I've never liked roller coasters. I really wish we could get off of this one now.
Tuesday and Wednesday were hard days for me. I've really been second-guessing our decisions, wondering how effective any of these treatments really are on brain tumors. Many other types of cancer are relatively easy to overcome - and there are even lots of what appear to be effective alternative treatments for them. Brain cancer is different. Many of the treatments are not effective against brain cancer because of several things, especially the blood - brain barrier, the dangers of swelling in the brain, and the sensitivity of the other parts of the brain. I can understand the reasoning behind radiation, and because the cancer cells can be targeted, it is a viable and probably necessary option. However, I wonder about the effectiveness of chemo on brain tumors, because the blood-brain barrier tends to block access of many, if not most (all?) drugs to the brain. As a result, Kol could be getting lots of drugs that will damage the organs in his body, but won't cross over into the brain where they are truly needed.
I wonder if doctors need to recommend these things just so they appear to be doing something, or if they really believe it to be effective. I wonder if they would go through all of these things themselves, or if they would be willing to put their children through it. I've been trying to find information about the different chemo drugs, trying to learn if they do cross into the brain. I haven't found any studies yet that show that any of them are effective on brain cancers. I have, however, recently come across the summaries and abstracts of many studies that show the ineffectiveness of many chemotherapy drugs against brain cancer, including the vincristine that Kol has been getting. They also list many more side-effects than we were told about. I know that some of you are tempted to tell me that I shouldn't be looking at studies - especially online - but I can't deny who I am. I need to know the answers. I need to believe I have correct and complete information when I make a decision, even if it is one of those non-decisions, where we have the illusion of choice, but, really, the choice is made for us. My son's life, and quality of life if he survives this is at stake. I will not just follow blindly.
Wednesday was a tough day for all of us, too, especially Kol. He has been getting sick from the radiation treatments. We thought we had things figured out on Tuesday. A regular dose of children's Gravol made Kol sleep for 3 - 4 hours, so we decided to give half of the dose before the treatment, and the rest about 2 - 3 hours later. He got a 3rd half dose 6 hours after the first dose, when the first wore off. The split dose of Gravol we gave him worked well, and he didn't fall asleep. We were happy not to have to use heavier anti-nauseants yet, and when we met with the radiation oncologist, he said to keep using the Gravol, since it was working. Then, on Wednesday, we did the same thing, but it stopped working. One hour after the radiation treatment, while we were waiting for the chemo and before the 2nd dose of Gravol was due, Kol got sick. We grabbed the garbage can just in time. He was sick again several more times, and he couldn't keep the Gravol down. We got a prescription for a heavier anti-nauseant then, which worked better Wednesday afternoon, and Thursday.
On Wednesday, it took 3 tries to get an IV started for the chemo, and they finally had to call a nurse down from PICU. Kol is apparently running out of veins which aren't damaged, and which can be used for the chemo. With all of the blood draws they have been doing, and the failed attempts - it also took 3 tries on Monday to get a good blood sample - the veins aren't healing fast enough to be usable for chemo. If there is a hole in the vein, the chemo can leak out of the vein, and burn the skin and tissues from inside. Apparently, a vein can often only be used once for chemo because of how hard the drug is on the vein. Now the Dr. wants to have a PICC line inserted, and he's scheduled Kol for that on Monday. That meant more blood draws Thursday, and another surgical procedure.
Kol is starting to lose his appetite, too, which makes every calorie he gets more important. I'm trying to make sure that he eats as nutritious food as possible. It's tough when the only things he likes are perogies, bread and peanut butter.
We're still at the beginning of this journey, and I'm worn out. I'd love to just go to bed and find out it's all a dream. I'd love to just bury my head in the sand, and pretend this isn't happening. I'm tired of waiting on pins and needles, watching Kol closely for signs that the tumor is coming back, or for new side-effects.