Doctor Decision

Dr. Shah (hematologist) called me today after having contacted another doctor who works in the pediatric thrombosis center at the Hospital For Sick Children in Toronto, Canada about what to do with Ari. That doctor told Dr. Shah that the risks of treating a clot that has not done any damage vs. leaving the clot alone are essentially the same. However, the doctors in their program routinely choose to treat every blood clot. Dr. Shah was very hesitant to prescribe the same (or make any decision for that matter), seeing as how Coumadin/Lovonox (blood thinners in general) are dangerous drugs. He wanted to do what I wanted him to do. I told him he was on his own in this, because he is the expert and I am not. I kept my opinions entirely to myself. He fought it a bit, acted exasperated, and told me that I was putting him in a very difficult position. After several pregnant pauses, he decided to go ahead a treat Ari. He wants to treat her for 3 months, starting her on Lovonox (injected) and then transitioning on Coumadin (oral). He said he wanted to have her admitted to the hospital when we return from our trip to start her on her anti-coagulation therapy. This was the only thing I argued, asserting that I am perfectly capable of injecting her and managing her from home. I promised that I would take her for her regular blood draws at the exact time prescribed, and I informed him that I managed my own anti-coagulation therapy during my last pregnancy. He said that it would be up to Ariana's insurance as to whether or not they'd require her to be admitted to the hospital for treatment.

I kept my opinions to myself to help the doctors maintain objectivity (and liability) for their decisions. But opinions, I have many. How do I feel about the new plan of care? I feel freakin' scared. I'm scared for so many reasons. Here are a few. I'm scared because these drugs are like poison to the body (just a few steps up from Chemo). Here are the serious, life-threatening side effects that we have to look out for:

Severe allergic reactions (rash, hives, itching, difficulty breathing, tightness in the chest, swelling of the mouth, face, lips or tongue); back, side,muscle, joint, or stomach pain; black, tarry, or bloody stools; blood in the urine (pink or brown urine); bloody or coffee ground-like vomit; chest pain; decreased urination; dizziness; fainting; fever; numbing or tingling; pain, unusual color, or temperature change in any area of the body; pale skin; purple, dark, or painful toes; shortness of breath; skin sores or ulcers; stroke symptoms (e.g. confusion, slurred speech, vision problems, one-sided weakness); sudden, severe pain in your legs, feet, or toes; trouble swallowing; unexplained swelling; unusual bruising or bleeding (e.g. nosebleed, bleeding from gums, coughing up blood); unusual headache or weakness; unusual pain, swelling, or discomfort; wounds or sores that do not heal properly; yellowing of the skin or eyes.

Did you notice how many of those side-effects are totally subjective, and rely upon patient report? How in the world am I to know if Ariana is experiencing pain, confusion, slurred speech, stroke symptoms (which she already exhibits), tingling or numbness, tightness of the chest, dizziness, headache or weakness, trouble swallowing, or temperature change in an area of the body when she can't even talk to me??? Like most infants and even toddlers, Ari cries several times a day for different reasons: hungry, tired, frustrated, didn't get her way, bored, discomfort, constipation, etc. Just when I think I have those figured out, I now need to find out a way for her to communicate "I'm feeling numbness"? That's really scary for me. I'm scared of having to inject Ariana, of having to take her to the hospital, of her having to become a human pin-cushion and her wondering if she's being punished for something. I'm scared of traumatizing her further. I'm scared that by treating the clot with anticoagulants (to prevent it from growing, not to break it up, remember?) that we are only putting the clot growth on pause, and as soon as we take her off treatment in three months, that the clot growth will resume and she will have a stroke anyway. I'm scared that she may fall into the one in twenty children (reported by Dr. Shah) who has a hemorrhage and it causes a stroke... or death. I'm scared that this decision wasn't really based on anything more than a coin toss and a risk-assessment of liability (this decision to treat is closer to a "standard of care" than the other option not to treat). Blood clots have always been considered to be almost non-existent in children (except for post-trauma), even rarer that a blood clot be discovered that has not caused major damage already, so there is really no precedent for what Ari is going through.

As for Stem Cell Therapy, we will be going, but the procedure will be different. Whereas before this happened, we were planning on having the stem cells administered via a catheter to her brain through the femoral artery, we are now going to have the stem cells administered through a regular IV in her arm. We are not going to have unnecessary surgery performed on Ariana, which would put her at a higher risk of forming blood clots. We have made this decision despite the fact that the treatment may not be as efficacious as it would have been with the catheter. That will just have to do. Oh, and the cost of the procedure will now be $12K instead of $17K, so we plan on using the remaining $5K on future stem cell therapy (should she show results) or other alternative therapies if she doesn't show results.

Right now, Ari is doing fine. We seem to be in the eye of the storm, but despite the fact that she appears the same, we know that things aren't "normal"; nor will they ever be. This is Ariana's second blood clot in her brain in fewer than three years. Jake and I feel pretty terrible about this, and we don't quite know how to deal. Some people complain that as soon as they finish the laundry, it seems like they turn around to find that the hamper is half-full yet again -- never-ending cycle. We feel the same way when it comes to Ari's health problems... it never ends, and it will never end, and we will never be able to feel free from having to worry about her. Like we are staring down the barrel of a gun, just waiting for our fates to be decided for us.

We need a miracle for Ariana; next week (stem cell therapy), next month (anti-coagulation therapy), and every day for the rest of her life.