Another crisis averted, at least for tonight…
Diego awoke this morning with his belly somewhat distended, tender to the touch. He was very tired today, cranky. At the clinic this afternoon he was crying and did not want to be there. (The memories of the feeding tube insertion trauma were still very fresh.) But, fortunately he had no pain at the appointment. The doctor believed the issue to be a gas bubble and after about half an hour of discussion and debate on whether the issue could be a bowel obstruction, we were sent home where I would keep an eye on him.
While he had no appetite today, he was doing great in the evening playing with Mateo. In fact, I thought everything was mostly going okay until 8pm or so I went to check stomach contents on the feeding tube and pulled out 50ml of what looked like bile laced fluid, nearly identical to what they were pumping out of Diego’s stomach just prior to his bowel obstruction. (Queue mother’s panic here.) I called the doctor on call and discussed the matter with him for at least half an hour. I was assured that the stomach contents, while somewhat alarming in volume, did not appear to contain bile. And while Diego was having pain again upon palpitation of the abdomen, was not in immediate pain. The doctor suggested that I wait another hour to see if the stomach contents were digested, and if not either go to the ER or urgent care tomorrow.
It’s an hour or so later the good news is that things are moving again. So we are safe once again, for now.
Cancer waits
Just last night after the boys were asleep I turned to Erich and said, “Diego is doing really well, and that has me worried something bad is going to happen.” And it’s true, every time Diego has shown signs that he is finally turning around, he’s suddenly taken a dramatic turn for the worse. At UCSF the day before he hemorrhaged he had shown a big improvement in vitals and we were all optimistic that he was going to continue down the non-surgical path. And right before the bowel obstruction I had just started to relax and noted how I felt that we were through the worst of it. Cancer always seems wait to catch people off guard. It seems the only way to play it safe is to never feel 100% safe. I hope and pray that today’s incident is just another scare for us, an anomaly, but I just don’t know. It’s hard to know when, if ever, we will be free from worry. The best I can do is to just relish the times when Diego is doing well, and take those at face value. It’s such a difficult way to live, always on the edge of your seat. At a parent, all you want to hear is that your child will be 100% okay, and that there will be a happy ending to all of this. But there are no guarantees. We all have to operate and believe that we will get that happy ending, while at the same time brace ourselves that something bad could happen, again.
Storms
Diego has recently been dreaming a lot about storms. And talking about them. Most of the time they have been nightmares but occasionally they have been good dreams. One to look at symbolism in dreams, I originally felt that the storms had something to do with Diego’s anxiety over our move, but now think that it’s his way to process what is happening to him, and how he feels about his cancer. Some days he tells me, “I like storms.” and other days he tells me, “I’m afraid of storms.” and often, “Tell me about storms.”
When I tell him stories about storms I like to tell him about my summers in Colorado at my grandmother’s house and the beautiful thunderstorms there. The way on a hot day the clouds will suddenly gather over the plains and darken the sky and provide some much needed moisture. And, in a flash the storm is gone leaving the air is moist and fresh. Hard to describe to a three year old, but it always felt like a renewal afterwards, a fresh start. I try to impress upon him that storms can be scary, but they can also nurture and help things grow, and most importantly that storms will pass.
Brave little boys
One evening this week I was giving the boys a bath I said something about Mateo being brave. Diego added, “He should get a necklace.” to which I replied, no the beads are only for brave little boys who have cancer. Diego cheerfully interjected, “One day Mateo will get cancer!” My heart sank, “No Diego, Mateo won’t get cancer. Nobody wants to get cancer.” And it hit me that Diego doesn’t really have the capacity to understand what a raw deal he has with this disease. It will take him years, probably, to understand what this all means, and what an epic fight this has been for him, for all of us. He doesn’t even know what death means. That sort of innocence can be heart wrenching.
As a parent of a young cancer patient, it often feels like I carry the weight for him. People often tell me about relatives or other people or even children they know who have died of the disease. Their hearts may be in the right place, trying to let me know they empathize that it is hard or a desire to connect with me, but no matter what the context this is not something I want to hear. They clearly don’t understand that when you are the parent, it is like you are emotionally the patient. We all know what can happen, and we really don’t want to hear about it over and over again. Everyone knows someone who has died of cancer, so let’s please work on focusing on the positive. There are happy endings and millions of cancer survivors out there. 73% of all pediatric cancer patients survive and Wilms tumor patients have even better odds. Be our cheerleaders, and let us know about the happy endings. They are out there, in that same circle. Your cousin, your grandmother, your grocer, your favorite blogger. Those are the stories to tell.
diego*love 