Highlight: Joseph’s neutrophils are low again and he is at risk of infection.
Highlight: Joseph is doing well at home, though he is experiencing some side effects from his treatment.
Highlight: Joseph has been chosen for a treatment protocol for the last 2.5 years of his treatment that could result in fewer long term side effects.
These past two weeks have been good ones for Joseph, including a wonderful Christmas here at home. Joseph has had a good appetite this past week and enjoyed his Christmas dinner and treats. In the picture Joseph is helping prepare the brussels sprouts for Christmas dinner. One of the “side effects” of all that Joseph has been through the past couple of months is a sense of gratitude among us at just being together and at home for Christmas. We have had a much less “packed” Christmas season and have had more time with each other, even if that means it is in care giving.
Last week Joseph was settling well at night but this week he has been very unsettled. We are not sure what has caused it (could be a side effect of chemo) but he is is often up several times during the night, more so than Ezra the new baby. Fortunately there are no serious problems, just being unsettled and needing support and comfort. However, this can take hours each night.
Another side effect from the chemo that Joseph has experienced is more stumbling and falling. The drugs weaken the muscles and fine balance so at times he can be trundling happily along playing and just tumble over. While he is picking up a few bruises on his knees, he is not being slowed down a bit. Each time he just picks himself up and keeps going. We have been told that some children go off their feet completely during this frist six months of treatment. We are grateful to hear that after these first months of more intense treatment Joseph should regain full strength and balance.
On Friday I took Joseph in for another round of outpatient treatment and his blood work indicated that his neutrophils had dropped by more than 50% in the past week and he is now back down to the level where he is at great risk of infection. The drop is a side effect of his oral chemo he takes each night. This week he will taken off that drug to allow his body to recover a bit.
This week, Joseph will have 5 days of oral steroid treatment. Joseph will receive a dose in the morning and the evening at home. Steroids have many possible side effects and two that Joseph will have is a great increase in appetite and a much lower threshold for frustration and irritation.
It may start to sound like we are dealing with lots of side effects from Joseph’s treatment, but we are very well aware that we are dealing with very strong drugs working on a deadly illness which a generation ago killed everyone who was diagnosed with it. So in that context, the side effects seem quite reasonable.
However, there are some side effects that can build up over the three years of treatment that can have life long impact on Joseph’s well-being. Now that the UK has a treatment process that is generally very successful against leukemia, studies are being done to see if the treatment can be altered to reduce long-term side effects. Some of these are learning difficulties, bone growth problems, heart, lung, liver, kidney, reproductive and skin issues that can arise due to treatment. Because of research done in the past ten years, the doctors have been able to determine that Joseph has a form of Leukemia that should be treatable with less intense treatment than the standard protocol. He has been offered and we have accepted a trial treatment that could greatly reduce his long-term side effects. The part of his treatment effected by this trial starts this summer and will continue until the end of his three years of treatment.
Until this summer, Joseph will be receiving the standard treatment protocol and that will be very challenging at times. But again, we feel bless