Six months ago, brain surgery had been done and dusted, 30 sessions of radiation had been completed and this was the time to recover and to prep for chemotherapy. They tell you that it’s a few weeks break in between treatment. However it’s not really a break. During this time Dylan required a number of test and procedures, including two separate surgeries, one being insertion of a double port and the other being the insertion of a PEG (Percutaneous Endoscopic Gastrostomy) – an abdominal feeding tube. Dylan lost a lot of weight after surgery, had been sick during radiation, and although he was on steroids and anti-nausea medication he still vomited regularly so lost a fair bit of weight throughout radiation. This being one of the reasons the insertion of a PEG was discussed.
Throughout this experience we have always presented choices to Dylan, from when the tumor was first discovered he has been involved as much as he has chosen to be.
So during this period nutrition, weight and side effects of chemotherapy were discussed and it was most likely that Dylan would require nutritional support throughout chemotherapy. The options with nutritional support are either a nasal feeding tube or an abdominal feeding tube. After some discussion on the pros and cons of both, Dylan decided, along with us that having the PEG would be the better option for him.
Essentially having the PEG inserted is enduring another anesthetic, an invasive but quick surgery, a few days in hospital to recover, along with the list of all the possible mishaps, another scar, a future surgery and a lot of wound care. It’s not a decision we took lightly but are so very glad we did it. Honestly I am not sure how Dylan would of survived through the months of chemotherapy, and the recovery afterwards if he didn’t have this procedure.
Dylan was so sick during chemotherapy that even having this kind of nutritional support he still lost almost 20% of his body weight and the day of his final dose of chemotherapy it was decided that he needed further nutritional support. Much to his disappointment he was admitted to hospital and spent 12 days in hospital having TPN feeds, a very personalized nutritional support given intravenously.
Almost three months later and Dylan is very gradually putting on weight, he is still underweight, still vomiting, still on PEG feeds, but getting stronger. Next week he will be going back to hospital for a gastroscopy and to have the initial PEG tube changed over to a button type, it’s hopefully going to be more comfortable for Dylan and less invasive than what he has currently. Then in the next few months he will have this removed permanently and just be left with a memory and a scar in his tummy.