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Diffuse Intra-Axial expansive Lesion of the Enchephalic Trunk not surgically investigated _3

Short summary

7-year-old boy was diagnosed with diffused intra-axial brainstem expansive lesion. The spine MRI scan indicates spread of the patient's tumor down along the spinal cord, in spite of having reduced at the brainstem. The expert agrees that radiation to the spine that the child started receiving is appropriate, and recommends that the child resume chemotherapy to cover the tumor more globally.

Patient's questions
In view of the information below, we will appreciate any suggestion and/or recommendation you might be able to offer.
Medical Background

We turn to you yet again after being notified on February 2009 that Patient’s tumor, in spite of having reduced to almost half size at the brainstem, has extended to the spine as evidenced by follow-up MRI scans performed on 02/2009. Images showed “marrow nodules”.

We were expecting some improvement in his physical condition by the end of radiation therapy to the brain, which was administered from 11/2008 until 01/2009, but our hopes did not materialize.
Patient does not present with head pain but is fatigued and the left side of his body appears pretty compromised. Patient drags his left legs and finds it hard to use his left arm and hand.
On 01/2009 as a result of fever and difficulty swallowing, he was given broad-spectrum antibiotics for 7 days and cortisone for 3 days.
On 02/2009 he showed fatigue and had difficulty speaking.
On 02/2009 onset of pain to his back and to his right leg which had been asymptomatic so far. Subsequently, cortisone therapy was re-initiated.
On 02/2009 new CT and MRI scans were taken at Milan’s Istituto Nazionale dei Tumori which revealed extension of the tumor to the bone marrow.
On 02/2009 Patient started receiving radiation therapy to the spine
(two applications per day for 15 days with interruption over the weekend).
Medical opinion
Here is what I can gather. Despite tumor reduction at the primary site of the brainstem, his physical condition is no better, and the spine MRI indicates spread of the tumor down along the spinal cord to the lumbar and sacral areas. Such spread is not uncommon in brainstem gliomas, and we do see this from time to time. I cannot tell if there is spread outside the spinal cord and spinal fluid to bone, but I have seen such in one child in the past while I was at Johns Hopkins.
For the tumor along the spinal cord and spinal fluid, yes, I agree that radiation to the spine axis is appropriate and agree with what was done. In addition, though, such spread indicates that this tumor is not inactive or eradicated, and I would advocate that the child resume chemotherapy to cover the tumor more globally, beyond the region of just the spine. We would recommend outside of a clinical trial oral temozolomide or oral etoposide, or on or off a clinical trial, bevacizumab plus or minus irinotecan, or capecitablne. While the experience with any of these is limited, and the number of successes in brainstem gliomas very small, I think the child’s current state of further tumor growth merits such. Even thought the primary lesion in the brainstem is “smaller,” I am not inclined to believe that Patient’s cancer is controlled.
If it is the case that tumor is actually outside the spinal cord or spinal fluid in the bone, such would be an ominous indicator. I would try to use the same treatments above, but recognize that the situation is much more grave. Tumor spread to bone itself can be painful, and would require prompt pain control.