The neurosurgeon came by and said that based on the results from the LP and the last few CT scans, he's 95% sure that Collin won't need a shunt. He will continue to monitor him, and warned that there will be times in the future where he will be having some of the symptoms of hydrocephalus because of the cancer; we will all be watching him closely and he can have more scans if necessary to see how things look. At this point, the neurological symptoms that Collin has are due to the cancer cells still in his brain, and the only way to treat him is to begin the chemo. At the end of our conversation, the neurosurgeon mentioned that he had another kid who had been diagnosed with a brain tumor the night before, and my heart went out to the family when I thought about what they were going through.
Collin had a few episodes of vomiting throughout the day, and one of the nurses mentioned that she wondered if it was possible that his NJ tube had moved and become an NG tube. I mentioned it to the oncology nurse practitioner, so she ordered an X-Ray to make sure that the feeding tube was still in the right position. Luckily the X-Ray showed it was. The urinalysis results from yesterday also showed that there was no UTI as a result of the catheter after the bone scan.
The physical therapist had brought up a combination between a stroller and a wheelchair, called a CuddleBug, yesterday. It fit Collin perfectly, and he seemed comfortable in it. He easily tolerated sitting up in it for about fifteen minutes today. Later I put him in it again when the speech therapist came to see him. She again wanted to see how he did with a little spoon feeding. I sat in front of him and told him I had a spoon with a little ice cream on it, and he became agitated. I told him I was going to put a little ice cream on his lips, hoping that if he tasted it, he might be more interested, but he only became more agitated. So then I told him if he wasn't ready, that was fine, and I put the spoon down and showed him my empty hands. His agitation quickly decreased. We went through the same exercise with applesauce, with the same results. It was very obvious at that point that Collin understood what was going on. The only oral exercise he has any interest in is breastfeeding, so I tried nursing him, but he started coughing because of the mucus in his upper airway. I stopped because I didn't want to make things worse.The first dose of chemo started at 4:30 PM. Prior to the start of the chemo drugs, Collin's tube feeding was stopped and he was given Zofran, Benadryl, and Reglan to help prevent nausea and vomiting; these drugs will be given throughout each course of chemo. The first chemo drug he got today was called Vincristine; it was given as an IV push with a syringe into the Broviac catheter in his chest and only took a minute or two to administer. He will get three doses of Vincristine during this first round of chemo-the dose today, a dose on day seven, and a dose on day fourteen. The side effects we watch for are jaw pain, constipation, and neuropathies. The second chemo drug he received today was called Cisplatin. It was given via IV over six hours. This was the drug that could affect his hearing, and it can cause kidney damage, so his urine output had to be closely monitored. So every time I change his diaper throughout the chemo, I have to wear gloves, put some cotton balls in the diaper so that a small sample can be squeezed out of the cotton balls to be tested for certain things, and his diapers have to be weighed to compare the amount of fluid going in versus the amount coming out. The Cisplatin will also cause low blood counts two to four weeks afterwards, so he will be monitored very closely for any signs of an infection because he won't be able to fight infection. If he gets the slightest fever, he will quickly be treated with antibiotics.
I found myself with mixed feelings about the start of chemo. On one hand I know there is no choice, and it's time to just get rid of what is making him so sick. On the other hand, we're pumping him full of poison that will make him more sick, increase his suffering, and possibly cause permanent damage, and it's terrifying.
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