Getting Support Through Palliative Care
Posted to Facebook on 1/10/17
At the suggestion of a friend (thanks, Babs…), I reached out to Dr. Waldman, the head of the pediatric palliative care team at Columbia. We’d met with him back in July when Ana had a scan. At the time Ana didn’t have many symptoms except for some shortness of breath, but he was very warm and helpful and it was a relief to hear that there were many options for alleviating Ana’s symptoms.
Dr. Waldman used to be a pediatric oncologist before he decided to focus on palliative care. He lived and worked in Jerusalem for seven years treating both Palestinian and Israeli children. He has a depth of knowledge that’s incredibly unique. He’s worked with many families and has experience with teens who are dying–which is not (thankfully) a much-needed skill. Except, well, we really need this expertise right now.
Yesterday I emailed Dr. Waldman and let him know that Ana was struggling with some new symptoms and that I didn’t feel like I had a handle on controlling her pain. Hospice hasn’t been very helpful in managing Ana’s specific needs, I guess because she’s quite active compared to their typical patient. They don’t have that depth of experience I was just talking about. The hospice nurse assigned to Ana is the most experienced nurse they have, but she wasn’t able to draw blood (for example).
Dr. Waldman emailed me back within 15 minutes. He said he was very glad I reached out and wanted to set up a call for the next day (today), but he said I could email him that night if we needed him. We did have a 45 minute call today with Dr. Waldman and his staff, including a Fellow who also used to be a pediatric oncologist and is now training to be a pediatric palliative care specialist. (aside: I find it incredibly moving that these two physicians have shifted their focus from curing patients, to caring for them in their final days. They’re taking years of expertise in treating cancer and leveraging it to help children remain comfortable and active for as long as possible. That’s amazing).
So, to make a long story short (too late), we’ve been using oxy for Ana’s pain – whether that’s mouth pain or chest pain or whatever else. It makes her groggy and can also make her quite irritable. Dr. Waldman prescribed a long-acting form of oxy called “oxycontin” which he said is gentler and can help alleviate her chronic pain (did I mention her lung hurts all the time now?) She’s in agony when she coughs or sneezes so she suppresses both – not good. This can lead to pneumonia…
He’s also giving her the generic form of ritalin in a very low dose which is meant to be taken as a “pick me up.” This is something he feels will help her get going in the morning because I mentioned she hasn’t been able to go to school much due to extreme fatigue. He said, “She wants to go to school and she’s afraid to sneeze. Let’s address both those issues.”
Writing about this is hard because the more detail I lay out in front of you, the more real this becomes. I mean, it’s real for us – we see Ana struggling every day – but to lay it all out there, well, I know it sounds bad. It is bad. Ana has a scan on Friday but we’re not going to stay to meet with Dr. Yamashiro like we used to. It’s get in, get out, take the girls to the mall for a bit of shopping therapy. This scan…well…we know it won’t be a good one.
Although I walk around with a very heavy heart these days, there is comfort in knowing we have Dr. Waldman and his team, we have hospice, we have Ana’s team at Columbia and we have you.