What a journey this has been. Yesterday Xavian had a CT done because he continued to be fussy and the vomiting was not easing up. The CT showed his left ventricle was larger than the MRI that was done 3 weeks ago. It is larger because something is obstructing the CSF from draining properly. The way to solve this problem is by putting a shunt in Xavian's head to drain the CSF (to his belly). The problem is they can't do the surgery because his white count is pretty much zero (0.08). There is a risk of infection when his counts are this low if they were to introduce something foreign into his body. To send us home his counts can be 200. To do the surgery they have to be to a normal level (between 4,300 and 10,800). Because Xavian has had 3.5 rounds of chemo his bone marrow is pretty much shot. They tell me it could take longer for counts to get where they need to be. Time is not on our side here...
We will continue to monitor Xavian by measuring his head circumference every day. The beginning of next week another head CT will be done to see if there is any more change. If he worsens they will have to stick a needle in through the sutures (joints between the plates in the skull) to pull some of the fluid out. Instead of sticking the needle through the ventricle to drain the fluid they will stick it in the cavity that was created by the tumor to drain fluid from the cyst. This will prevent any damage to the healthy brain tissue.
Right now, Xavian will be on scheduled morphine to keep him comfortable. He will continue to get the maximum dose of Leukine to help boost his white count. Other than those we will play the waiting game, again.
Please pray that Xavian will find comfort with the meds and rest peacefully. Pray that his counts increase quickly. Pray for peace and comfort for Matt, Dante and myself. Pray that I or Matt will know what to ask our surgeons/doctors so we can fully understand what needs to be done.
4 weeks ago