Wednesday, September 10, 2008

Delaying Delayed Intensification

Jacob was to have started the next phase of chemotherapy today but we had a very minor (please read - minor - nothing to lose sleep over) bump in the road.

First, let me explain what this next phase looks like. Delayed Intensification is the last phase before reaching maintenance and will consist of two cycles of chemotherapy that will each last about a month. This will be a major assault on any remaining Leukemia cells that are in Jacob's body and as such will involve higher doses of a larger variety of chemotherapy agents, very similar to what we went through the first month with induction. Jake will have oral, intrathecal (spinal), IV push, IV fluid and intramuscular chemotherapy over the next two months. WOW! Just typing it is more then a little bit overwhelming.

Along with direct side effects from the chemo (the main ones we had before being moon face and weight gain from the steroids, possible hair loss, aches and pains in the muscles and nerves, and loss of energy) we will also see Jacob's immune system be severely compromised. Once we start the chemo load Jake's numbers will start to drop and somewhere around 2-3 weeks he will need to be home to help protect him from infection. It usually then takes another 2-3 weeks for his blood and body to rebound back to normal numbers which would be the end of the 1st cycle and we will then do that one more time. This means we will be in and out of school for the fall - we are so fortunate to have an amazing teacher for Jake and an entire school and staff that is supporting us.

So back to the bump in the road. When we got to the clinic - Jacob's CBC came back with an ANC of 610 which is too low to start the next phase of treatment. This is not related to the actual Leukemia. All other blood work shows that things are progressing really well. Dr Odom feels that it is due to his body fighting off illness / infection. With the chemo, any time his immune system is called upon it causes numbers to take a drastic dip. To compensate, we are delaying the start of the new treatment, suspending his current chemo meds to allow his body a chance to rebound and hoping to start back next week.

While we were unable to start the full regiment of treatment - Jacob did have doses of IV chemo in addition to a spinal tap. I did not realize that was on the agenda for the day so this was our worst tap to date. Valuim, which is a key ingredient to them going well was absent and the numbing cream was not as effective so Jacob felt the tap. My baby felt the spinal tap. And my wonderfully brave little boy, with the smallest voicing of ouch, simply held still with a tear going down his cheek so that the Dr could finish. Children rebound quickly and he was soon moving on to Doritos and Nintendo. My heart has not moved on so quickly and my tears were not limited to one. Today was one of the hard days.

To end on a happier note - here is my favorite video from vacation. It shows just one of the many areas that my son is becoming brave and courageous in. While we are not sure what illness Jake is fighting right now, after seeing this video - Dr Odom would not rule this out :)

I will try and get more vacation photo's up soon. Enjoy this for now.