A3 update
The latest from my dad - thank you for your concern.
Life always seems to present the good and the bad.
The good is that Alan has finished the 4th from the last (i.e. 3 more to go) chemotherapy. Despite catching a cold over the weekend, he has done well. His radiation recall (mainly his tracheostomy scar and the long scar running down the back of his neck) was significant enough that Dr. Belasco truncated it a bit; leaving off the last part of one of the drugs.
The bad is that at his 'annual' MRI there was a tiny area of irregularity. It was so tiny, in fact, that the MRI was read as 'normal'. The MRI that was obtained last week showed this tiny area again, and this time a bit larger. Both times he had his halo apparatus on, so the resolution was not as great as was desired.
Current thinking seems to be that this is either a recurrence (which is devastating news) or a scar produced by radiation effects. Mitigating factors seem to be that it is in the area where the tumor had breached the dura, but also in the area of greatest radiation. And his skin has reacted so much to the radiation effects, even though they are almost 11 months old. If the area is within the cord, the likelihood of a scar is much greater. If it is on the surface of the cord, it is likely a recurrence of the tumor. On the good side, we hear that this tumor more often recurs where it originated. Since that part of his anatomy is now in a different building (research) it will do him no harm there. Again, we have the supporting evidence of having no tumor cells on any of the spinal taps he has had; the last was about a month ago.
Current thinking is that we need to have another MRI, this time with him in a cervical brace (Dr. Storm will have to attend this and help him out of the halo and into the cervical brace. It is scheduled for the end of the month and will hopefully provide a definite answer.
Otherwise, he is doing well. Good spirits, playful attitude, beating me at chess, playing games with his wonderful sister Ann Walt.
As always I ask for your prayers for the boy. And also for Carrie Ann, who throughout this difficult time has been one of the most awesome people. She gets very little rest and drives herself to keep his medications delivered precisely at the right time and to maintain a meticulously clean, wonderful home for him (and now for Ann Walt too, who will be taking a course at U. Penn this summer).
Love,
Alan
Life always seems to present the good and the bad.
The good is that Alan has finished the 4th from the last (i.e. 3 more to go) chemotherapy. Despite catching a cold over the weekend, he has done well. His radiation recall (mainly his tracheostomy scar and the long scar running down the back of his neck) was significant enough that Dr. Belasco truncated it a bit; leaving off the last part of one of the drugs.
The bad is that at his 'annual' MRI there was a tiny area of irregularity. It was so tiny, in fact, that the MRI was read as 'normal'. The MRI that was obtained last week showed this tiny area again, and this time a bit larger. Both times he had his halo apparatus on, so the resolution was not as great as was desired.
Current thinking seems to be that this is either a recurrence (which is devastating news) or a scar produced by radiation effects. Mitigating factors seem to be that it is in the area where the tumor had breached the dura, but also in the area of greatest radiation. And his skin has reacted so much to the radiation effects, even though they are almost 11 months old. If the area is within the cord, the likelihood of a scar is much greater. If it is on the surface of the cord, it is likely a recurrence of the tumor. On the good side, we hear that this tumor more often recurs where it originated. Since that part of his anatomy is now in a different building (research) it will do him no harm there. Again, we have the supporting evidence of having no tumor cells on any of the spinal taps he has had; the last was about a month ago.
Current thinking is that we need to have another MRI, this time with him in a cervical brace (Dr. Storm will have to attend this and help him out of the halo and into the cervical brace. It is scheduled for the end of the month and will hopefully provide a definite answer.
Otherwise, he is doing well. Good spirits, playful attitude, beating me at chess, playing games with his wonderful sister Ann Walt.
As always I ask for your prayers for the boy. And also for Carrie Ann, who throughout this difficult time has been one of the most awesome people. She gets very little rest and drives herself to keep his medications delivered precisely at the right time and to maintain a meticulously clean, wonderful home for him (and now for Ann Walt too, who will be taking a course at U. Penn this summer).
Love,
Alan