Maintenance

When Ev was first diagnosed he was considered high risk. His counts were crazy and that was a big part as to how we almost lost him that next day. So, there are certain adjustments that are made because of this. During the maintenance phase he will get more spinal taps (the doctor takes spinal fluid and then inserts chemo into the spine). He absolutely hates this part and will tell us all that he doesn't want "wrinkly eyes." He is sedated for this procedure and that's how he gets wrinkly eyes. The loss of control unnerves him.

The bigger picture is that Ev's response to all of his treatment so far has been positive and the staff often does not consider him high risk. This gives us more confidence that he won't relapse.

The maintenance phase will last awhile. Girls usually go for about 2 years and boys go for about 3 years. They have found that the boys would relapse because cancer cells were hiding in the testies. The longer treatment seems to take care of any hiding cancer cells.

So, once a month we will go to Riley for chemo (he will not get a spinal tap every visit). And, at home, throughout the month he will get oral chemo. Our goal will be to stay out of the hospital in between visits as much as possible, which so far we have been blessed with that uncommon advantage. We are a rarity to the cancer world with the amount of time we have been able to be at home (aka no fever...no infections). I am so very thankful for this alone. It's big for the well being of our entire family.

It will take some adjustment on my part because I won't have a weekly update on his counts. Ev is as unpredictable as he is strong (and loud). So, his behavior, skin color, etc. will not necessarily clue me in, but I don't fear this...I'm just concerned. Perhaps a small distance between the two, but a difference none the less.

Many steps have been taken to get to this point, some easy and some the hardest we've ever taken. But, there is such a joy knowing that our family of four is all doing what they can to keep going and doing so with laughter and love at the center.