May 18, 2011

Dear Friends and Family,

Michael had all of his scans and his bone marrow biopsy last week at Cook Children’s Hospital in Fort Worth. Their scanning technology is a little more advanced, so we feel more comfortable getting his scans done there from this point forward.

Michael’s Bone scan shows the same cancer around the orbit in his left eye, in the eye socket.

Michael’s CT scan shows the same cancer in the left eye, but slightly smaller. There is also a second spot, a mass on his spine, between the middle and upper spine.

His bone marrow is negative, so currently there is no cancer in the marrow.

In his MIBG scan, there are two spots that are very faint, and they are on his skull and his spine. However, they are so “dimly lit” that they do not qualify as significantly MIBG avid spots. So this is good news, because there is no additional cancer showing up on this scan other than those two iffy areas. This means he does not qualify for MIBG treatment, which is also good.

Since the two new areas of concern that we learned about from the Bone and CT scan (in the eye and spine) are not MIBG avid, they would not respond to MIBG therapy. So if he did have a bunch of MIBG avid cancer, we would have to do MIBG therapy for a month or two, and then also deal with the cancer in the eye orbit and spine separately. Now we can focus solely on the two relapsed cancer sites. We are primarily considering radiation, surgery, and chemotherapy.

Michael began outpatient chemotherapy this week at Children’s, and will finish that up on Saturday. He will have this same chemotherapy for two more cycles over the next two to three months.

We will spend the next couple of weeks talking to pediatric surgeons around the country about whether or not we should operate on the cancer in his spine, and possibly even the area in his left eye. We will also consider radiation. After we complete the three cycles of chemotherapy, we will scan him again, probably some time in August. At that point we will move forward with surgery and/or radiation, and/or continued chemotherapy. Of course, if his cancer has spread by then, we will consider other options as well.

I know these scan results are confusing. The best way I know how to sum it up is to say that we are very happy that his bone marrow is clear and that his MIBG scan is virtually clear. But we are certainly concerned about the fact that Michael has not been able to clear completely after 17 months of treatment, and that he has active cancer in two areas of his body, which are categorized as recurring disease. Michael can only endure so much treatment, and we need him to clear completely in order to be cured.  We do have options left – more than we would have even two years ago. So we will continue to believe that one day our test results will be able to be summarized with just one sentence – that he is cancer free.

Thank you so much for all of your support. For your cards, your emails, your phone calls, and your prayers. We still feel the circle around Michael that is made up of all of you.

With love and hope,

Alison & Mike