FAQs

Karlee had a pretty good day today.  She was a little tired and sore this morning and was complaining about her tummy hurting.  About 10am she had a little nap and somewhere around noon she perked up a little and had a much better afternoon and evening.  She is still very tired by the end of the day and is ready for bed around 7:30 and once she is in bed she stays there and sleeps until she needs to pee.


Several people have asked the same or similar questions so I figured it was time to try and answer some of the common ones.  I am far from a doctor so I might get some of the details wrong, but I can get the general information across I hope.


If Karlee is already in remission why does she still need treatment?


This is by far the most popular question.  Remission for leukemia doesn't mean the cancer is gone it just refers to the number of blasts in her bone marrow.  (Blast cells are cells that will not develop into the normal red cells, white cells or platelets that the should.  These are the bad cells that the oncologists can see in the bone marrow aspirates.)  When the number of blasts falls below 5% of the total cells the patient is deemed to be in remission.  This normally happens within the first month of treatment and Karlee was under 1% within the first week.  If treatment was stopped at this point the cancer would quickly return.  The goal within the first six month is to get the blasts to the point where they are not detectable by the oncologist.  The blasts will not be completely gone at this point, but there will be 1 blast in 100,000 or 1 million cells.  Treatment used to stop at this point, but they were finding that there was a very high rate of reoccurance.  This is why there is the 2 or 3 year maintenance phase.  In girls the phase is normally 2 years and in boys it is between 2.5 and 3 years.  The maintenance phase will eradicate all the blasts and the patient should end up in permanent remission.


Why is radiation therapy not used?


It depends on the type of cancer that the patient has.  For ALL radiation therapy used to be used, but the long term side effects were more harmful than the cancer.  Radiation may be required at a later point, but as part of the standard protocol it should not be used.


Why does Karlee need blood transfusions?


Every time that Karlee goes to the hospital the first thing they do after her vitals is access her port and draw blood.  This blood is used for a CBC (complete blood count) which gives the doctor a great deal of insight into what is happening within her body.  The most important count for the blood transfusion is the hemoglobin count.  This is the count of the red blood cells that are used to carry oxygen.  This is also the component of blood that gives the lips and skin their rosy colour.  Depending on the child the oncologist will order a transfusion at different levels.  For a teenage girl they would give her blood when her counts fell below 110 or 100.  For a 6 or 7 year old it would be when the counts fell below about 80.  For Karlee she generally has good colour and a high energy level in the low 70s.  When she falls into the high to mid 60s they give her blood.


Why does Karlee need washed blood?


Karlee is IgA deficient.  IgA deficiency is the most common of the primary immunodeficiencies.  The concern with giving her blood is that she may have antibodies in her blood that will fight the IgA.  Between the hematology department and our oncologist they decided that the blood should be washed to ensure there is no reaction or rejection.  The hematology department felt the blood should be washed between 4 and 6 times while the oncologist felt that washing the blood that many times would remove most of the benefit of the transfusion.  The oncologist won this argument and the end result was that the blood was only to be washed once and they would monitor her during the first transfusion.
IgA is one of the last antibodies to develop so the doctors feel that the development of IgA might have been interrupted by the leukemia in Karlee.  They want to retest Karlee 6 months after maintenance has been completed to see if she is the 1 in 500 who are IgA deficient.


If you have any other questions let us know and we can ask the doctors or the nurses for more information and let everyone know the answers.