Monday, February 11, 2008

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.


Anonymous said...

Tara and Bryan, thx for sharing so much with those of us who find ourselves addicted to your updates. And for being so honest with your fears and concerns. Please remember to let your friends help with these upcoming difficult days. I think I can speak for all of your readers when I say----we are willing and waiting for our assignments.
the krause house

t said...

WOW. I am just overwhelmed. I can't imagine having to sift through all of the possibilities. I had no idea the extent of outcomes and now, it feels so real and so scary to me.

I agree with the last commenter, in that I am willing and waiting to assist you all in anyway. I will continue to keep henry in my prayers. He is so blessed to have you and Bryan as his parents.

Hold your head up high. You can do this, and we'll be there for you.


Anonymous said...

On your "journey" remember if you should trip or fall going up and down the mountains your family and friends are right behind you to pick you up and help you on your way.

Nancy in NC

granya said...


You write so well - recount it all so thoroughly and personally - never leaving a "dry eye" in the audience.

Everyone that knows you and Tara and your family, close and extended, is living this story with you, daily, because of your willingness to share.

Thank you.

Love, Granya

Anonymous said...

Bryan and Tara,
Granya said it so perfectly...
Your extended family is definitely out here for you all.
The emotions you are dealing with are so very hard.

We are just starting to go down the cancer path with my husband and it is a scary one. Nothing compared to what Henry and all of you are dealing with. You have no idea the strength I get from you and reading your blog. Thank you!

We love you!
Cousin Susan H.

Anonymous said...

Bryan - Thank you so much for sharing with your family and friends your deepest fears and thoughts. Because of all you and Tara have written, I don't think any of us will take life, love or anything for granted again. You remind us that each day, each life, each love is a precious gift. You open our hearts and minds to the self-centeredness we all indulge in and to our petty grievances or complaints and teach us a different way, a better way to treat one another - with love, respect and gratitude for each person we encounter, for each moment. And you teach us about mountains, endurance, courage and hope - always hope. The Scheck family is a gift you give each of us through your blog. Blessings and love to you all, mab