The Journey Ahead

Lately Tara and have had the uncomfortable feeling of having received good news regarding Henry's MRI, but having a sense of unease and foreboding. We've presumed it's been because since Henry's diagnosis, we've looked no further than the MRI to prevent our imaginations from running amok with the possible outcomes. Since the MRI, we've suspended our planning a bit in favor of awaiting some additional information about the future of Henry's treatment. Today we went to Hopkins to meet with the transplant doctor and our primary oncologist.

There were a couple of quick tests that Henry required today and with insurance approval finally in place, went off without a hitch. He received a CT scan of his sinuses and a chest x-ray. Both to check for latent infections and the x-ray to ensure his catheter placement was still true. Henry has become a pro at these. With the testing out of the way, we returned to the outpatient clinic to meet the doctors.

Having a child with cancer alters your dreams. It changes your perceptions of the world, the people you interact with and the long-held beliefs about everything from what one should expect from everyday life to the metaphysical questions of why we're here. When you laugh, you wonder if you're really allowed. When you cry, you do so more often and for many different reasons. Today we were given a glimpse of the road ahead and there are significant mountains to climb, the descent from which only a few make.

High dose chemotherapy is required for someone with medulloblastoma, especially with an anaplastic cell type. Left alone, chances are extremely high that the cancer would return. Henry's regimen will include two additional rounds of chemotherapy, each with their own recipe consisting of differing agents. The use of different agents decreases the likelihood that a cancer cell may have resistance to the chemotherapy drugs used.

Near term, Henry will likely face the loss of a significant enough portion of his hearing that he will require a hearing aid. One of the drugs used has already shown Henry's susceptibility to it and we will need to use a much higher dose to have the best chance at eradicating his cancer, but only for one cycle as its planned now. This judicious use may prevent total hearing loss without compromising efficacy.

Henry will be unable to return home for the duration of his chemotherapy. He will spend 3 weeks in the hospital having the therapy administered and his stem cell transplant. Whereas in the first three cycles, his system had its nadir for approximately 4 days, during this treatment, his system will be compromised for much longer during which he'll stay in the hospital as the risk of leaving is too high. We will then be discharged but because of the state of his immune system, he must be within a quick drive to the hospital and therefore must stay nearby. This will be true after our final discharge after the second high dose cycle as well.

The chemotherapy will also break down his immune system's memory for many months. He will have to be re-vaccinated in about a year's time. Long term, Henry will likely be unable to have children. He will be susceptible to other malignancies as well, such as leukemia or skin cancers for which he'll have to have annual systemic testing.

After these two cycles of high dose chemotherapy, a similar battery of tests will be performed to assess the state of Henry's cancer. We cannot hope for a better reading that that of late, the best result for Henry's type the transplant doctor said he's seen. So the best case scenario is that we can find no evidence of the cancer cells, but even that result does not eliminate the possibility. Recurrence is the fear for any cancer patient. So then, we wait.

We will find out soon, exactly when we start this journey. I'm sure it won't be without its obstacles - some of which we've already climbed or skated past. As for Henry, we're planning on holding his hand up and down every mountain.