Caleb: Mycosis Fungoides update

My son, Caleb, was diagnosed with Mycosis Fungoides back about 4-5 years ago.  He had been to the doctor many times over the few years prior to this because he always seemed to be getting rashes or infections on his skin.  Usually the doctor would just prescribe some lotion or steroidal cream to try to treat the condition.  Finally, a new doctor we saw that was a Dermatologist, Dr. Kang, decided that maybe Caleb had something else going on.  He asked if Caleb could be part of a study group that was through Oregon Health Sciences University.  We agreed and Caleb went there as part of a special group where 3-4 doctors at a time would examine him and see what they thought.  Perhaps 20-30 total doctors were part of this study group.  One or two of these doctors said that Caleb had a rare type of lymphoma called Mycosis Fungoides.  This was then confirmed by more testing.  Dr. Kang then told us all about this condition.  He said it is extremely rare in children (that is more typically seen in 50-year old males, etc.)  He said there wasn't a lot known about treatment for children and long-term effects, etc. because it's just so rare.  He recommended - based on consulting with some of the other doctors - that we do ultraviolet light treatments (in what we called a "light box").

We proceeded with these treatments, which started with very brief times of exposure and gradually increased.  Caleb got in the light box with nothing on but special goggles over his eyes and a little cup thing over his penis.  For us, this treatment worked very well.  The places where his skin used to show signs of the cancer gradually went away.  The best news is that since these treatments, when he goes in for follow-up visits, there has been no recurrence of anything visible.  We are told that he still has the cancer -- that it will never really go away -- but that for now his is basically in remission and we just have to do periodic check-ins to watch for any signs.  We used to see Dr. Kang every 6 months, but now are only going in once a year.

Personally, we are big believers in prayer and the power of God to care for and heal people.  We had lots of people praying over Caleb and we now give thanks to God for his healing.  We are thankful that a certain doctor decided to not just treat the topical condition on Caleb's skin, but to bring him as a patient to share with his study group.  We are thankful that a doctor who had seen this before was a part of this group and helped identify this very rare cancer in a child.  We are thankful that the light treatment or God's hand of healing or both have somehow put his cancer into a type of remission.  And we're continually thankful for Caleb's healthy life.

Today Caleb is a freshman in high school.  He's a 6'5", 195 pound healthy kid that excels in the classroom and is very competitive in football, basketball, and track.  We don't know what all the future holds, be we are blessed with good days right now.

If you'd like to talk sometime, you are welcome to contact me either through email or on my cell phone (if you comment here, I'll get in touch with you).  I've had several other parents of mycosis fungoides patients get in touch with me.  It's a difficult disease and especially hard for everyone when it shows up in children.