So many of you have asked about whats next in terms of Kashius being off treatment. It is definitely a strange feeling to not be giving him chemo pills every night. Basically, being off treatment means a few things. First: For the next three months, Kashius takes antibiotic pills 3 days a week to fight off a particular kind of infection that occurs with low immune systems. This was given every month via his port over the last three years. Second: During lengthy chemo treatments, folks can lose immunity to vaccinations. It doesnt always happen and doctors can check something called titers to see what is left in the blood. Kashius unfortunately has nothing left. He has to be re-vaccinated for measles, mumps, rubella, chicken pox and pertussis. Right now, he has no immunity to them...we will NOT be heading to Disney in California! He will get those vaccine shots again in the summer once his immune system has bounced back. Third: There is no cure for leukemia. There is long term (we pray life) remission. Relapse can occur at any point, but obviously we cant dwell on that or we will go crazy. Blood checks will happen every month for the next year, then every 3, every 6, etc. over the years. Relapse can be seen in blood counts, just as the initial diagnosis was. The further off treatment he gets, the better his chances of NOT relapsing. If relapse occurs, it is more serious and treatment starts all over again. Fourth: Side effects from 3 years of chemo? There are so many I cant list them. Some are cognitive, others physical. Each drug he had over three years has its own list. He may never present with any, he might have a bunch. It is very hard to predict any of that. Secondary cancers are one of the most common side effects of chemo, and obviously the one that scares us the most. Fifth: His immune system may never be normal - it will take months, if not years to bounce back completely. There is no magic 24 hour turnaround after going off chemo - he may be susceptible to germs for years. This is also hard to gage. If only we all knew our own white count numbers before any type of chemo treatment, we would know what our norm is. He may become the healthiest guy on earth - that is our goal! As we move forward, we as parents are guarded because although we are so happy, we also know that chemo has been keeping him safe all these years. I think the further time goes on, we will be able to distance our fears a bit but it will always be there. Cancer has changed us in so many ways. We have seen the worst of a disease and the best of humanity. It has made us be more loving, giving and less caring about the little things. It has most definitely made us stronger, and we have met people in our lives that have made a huge difference for our son, and our family. I hope this post gives a little insight as to where we are at :-) Thank you all for everything...always.
Posted on: Mon, 19 Jan 2015 20:59:12 +0000
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