FAQ

Just thought I would post a few of the common questions, along with my understanding, that I get from friends and have asked the doctor as well.

What does the stem cell transplant mean?

By receiving the stem cells from a random cord blood donor the end result is to build new bone marrow.  The intense chemo therapy prior to the transplant eliminated his original marrow, thus leaving room for the new stem cells to attach and grow into bone marrow.  The ultimate end result is for the new marrow to take over as the old marrow is what was generating the leukemia.  A nice analogy that the doctor has used is that it is like destroying everything in a garden in order to get rid of the weeds and then replanting.  In this analogy, the weeds are leukemia and the roses are the new marrow.

If the transplant process kills the old marrow, why did the test results show 30% from the old marrow?

There is a possibility that the old marrow wasn’t completely destroyed.  It is also possible that the 30% cells that were found were just old cells that were around prior to the transplant and are actually in the process of being exterminated.

 Can the ratio of old marrow to new marrow change?

Yes, as the new marrow continues to grow it should increase in the amount of production.  Usually the test that was run is performed on day 100, so the initial results were a bit premature.  The doctors expect/hope that when we run the test again on day 100, we will find a much more favorable ratio.

 Can the leukemia return?

Yes, the leukemia can return, but hopefully the new marrow can trump any potential leukemia from the old marrow.  Ultimately the new marrow will begin generating at least 95% of the new blood and cells and if the old marrow starts to generate leukemia “type” cells the new marrow cells will be strong enough to kill it off.

 Can Cutler have visitors or go out in public?

Now that Cutler is home we are just trying to keep him from any potential infections and illness.  We are limiting his exposure to anyone that could potentially cause an infection.   Cutler is allowed to go outside for walks, but must be kept away from others.  We can have visitors, but are trying to keep it minimal and no one under the age of six for at least the first month.  As time goes on we can start to expose him to more, but it is a gradual process over the next six months.

 What are the next steps?

For now we continue to work with Cutler at home on eating and drinking so that we can get him off the feeding tube.  He is currently on five different medications to help with potential infections, fight off graft versus host disease, fight off pneumonia, stimulate the digestion system, and stimulate hunger.  We also continue to go to the doctor (currently multiple times per week) to have blood tests run to monitor his levels and watch for any potential return of leukemia.  Over the next six months we will look to ween him from the different medications and watch for any chronic graft versus host disease.  In six months, Cutler will need to repeat the immunizations as if he was a newborn.  At this time we can begin to look at returning him to daycare.  Until then, we have Melanie’s cousin here to help serve as a nanny.

 How long until Cutler is “cured”?

From what the doctors have told us, they really don’t feel comfortable classifying this as a cure until he is at least five years old.