Two nights ago Peter and I went to Glenview for our monthly meeting with the Bipolar Kids support group. We've been attending faithfully throughout the past 8 years. As usual, Peter had a great time hanging out with a young adult counselor and another bipolar young teen. In the parents' meeting, I shared our shocking news. Some of my fellow parents had trouble understanding our decision not to pursue a bone marrow transplant, although none of them knew much about what the process was like. The long-time leader of the group, a psychiatric nurse and MSW, was very affirming. After the meeting, she gave me a hug and told me she was proud of me for knowing what's best for Peter and having the courage to do it.
At choir rehearsal last night, everyone gave me a warm hug and then cried with me when we rehearsed the Billy Joel song "Goodnight, My Angel". So many things take on an aching poignancy. We just started rehearsing that song this fall ... and now it's only November 10, and my son is dying. Before I went to bed last night, I stood over Peter and whispered some words from his favorite storybook: "I'll love you forever, I'll like you for always. As long as I'm living, my baby you'll be". That's going to be a new bedtime ritual.
Leo and Annie are struggling but rising to the occasion with great love and fortitude. Both have plans for more time with Peter doing the things he enjoys most. I think we're all past the point of disbelief now; the wind is no longer whistling in our ears. We are all sad, but we can't change the outcome, only the journey between now and then. We all agree that there's no point in telling Peter he's terminally ill. When he starts having symptoms, he's bound to start asking questions. That'll be the sign that we need to start talking about it.
I've consulted with several doctors I know about how much time Peter may have left. So far, everyone agrees on "probably months", but says that it would be irresponsible to make a real prediction. I went to the hematologist on my own today to discuss the advance directive Carl and I want to create so that everyone is clear about our wishes for Peter. I learned from Dr. Kwan that nearly all procedures require consent, so our document only needs to cover things like life support and resuscitation.
Dr. Kwan says that some kids like Peter with very low blood levels will plateau for a while before going downhill more rapidly. A catastrophic event could occur at any time, but probably not until the levels drop further. The first symptom we're likely to see will be tiredness. Peter will be increasingly susceptible to infections, but since we're joyfully choosing "ordinary life" for Peter, we're not going to sequester him at home. He loves school and hates being solitary. We'll take extra hygienic precautions and treat infections as they come up, but we're not going to keep him away from people.
We talked about blood transfusions. Carl and I are OK with the idea if it'll give Peter more quality time, but once started, it's hard to figure out what the end game would be. At what point do we stop? Dr. Kwan looked straight in my eyes throughout the discussion and said that he and his associate had talked at length about Peter in their weekly conference. Since we're not trying to keep Peter going indefinitely while waiting for a transplant donor, they are suggesting that we don't even start down the transfusion path. This is appealing because Peter won't have to have a transfusion "port" implanted into an artery nor spend increasing amounts of time tethered to an I.V. pole.
We don't want to give Peter androgens to prop up his red count because they are likely to upset his hormonal balance and destabilize him. Anyway, they only work 50% of the time, and their effect is transient. There is a medication we can give him to keep his white count up, but it requires daily injections. Carl and I are still on the fence about that. I think we might try it to see if we can turn it into a quick daily routine. We don't want Peter to start thinking of himself as a sick person, or living the life of a sick person, until as close to the end as possible. There is a new medicine that is injected only every 3 weeks or so, but it's unlikely that Peter's insurance (Medicaid) will cover it.
I scared myself the other night thinking about how I would handle a catastrophic event in India. Here, we can rush Peter to the Emergency Room to deal with what's going on in the most appropriate way. The doctors and nurses will keep him comfortable. The same is likely to be true in India, though it might take a little longer to get to the E.R. We're not asking for sophisticated care, so any decent hospital will do. But what about the plane ride, when we're over the Atlantic ocean or the mountains of Iran? What if Peter has a nosebleed that won't stop? I saw myself cradling him in the back galley of the plane, trying to stop him from choking on the blood, rocking him and telling him to take deep breaths and rest, because I was right there and it was going to be OK.
I mentioned all of this to Dr. Kwan, and he said that a platelet transfusion would be a good idea. Carl agrees, so I'm going to schedule one for next week. I think it was good to consider how I would handle something like this on my own. No matter what happens or when, Peter must never see fear in my eyes or feel dread in my heartbeats.
Tonight I finally spoke to the other family that is traveling with us to India. They were, of course, in utter disbelief when I told them about Peter's condition. Then Karen said, "We are blessed to have this chance to walk with you and Peter on your journey. We'll be right there with you every step of the way". The people at SICW, Peter's orphanage, are making ready to welcome him home. Michelle and the girls at Shishur Sevay in Kolkata are very excited about our impending arrival. Michelle told me to tell Peter that he'll be everyone's "dada" (older brother in Bengali) when he's there. My Indian brother and sister-in-law in Bangalore are happy to have the chance to spend a little more time with Peter. During my niece Jyothi's wedding a few years ago, he made quite an impression on everyone with his wide-eyed delight and endless hugs.
I cry a little every day, but it rarely lasts long. People think I'm being "amazing", but ever since this began, I've known that I have a job to do: to take Peter by the hand and walk with him all the way to the end, using my magical Mommy Powers to keep fear and pain at bay. When I think about that, I feel determined, peaceful, and very lucky to have a strong constitution.
My Indian mummy, Shanti, appeared at my elbow on the day the phone first rang, and I know she will stay beside me for as long as I need her. Mummy was indomitable. Strong, smart, opinionated, stubborn and immensely practical. She made her own decisions about how she wanted to live the last years of her life. We talked often about life and death during my last visits to Manipal in 2004 and 2007. When her time came, she enjoyed the swift, peaceful death that she was hoping for. Now she strengthens my resolve as I seek the same thing for Peter.
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