Unless you know someone with this condition, you're probably thinking, "What???"
Yesterday we learned that our son, Caleb (who is 10), has a rare cancer called "mycosis fungoides". He's had skin irritation, rash, and occasional infections for 2-3 years, but only now has a doctor figured out what it is. He will begin ultraviolet light treatments 3x-a-week starting on July 9 and they hope to have it in "remission" before school starts.
Here are some praises to go with this prayer request:
First, the median time from first skin symptoms until diagnosis is six years. While we could be frustrated that our pediatricians over the last 2-3 years never figured out what this was, the dermatologist we're working with now, Dr. Kang, told us that most pediatricians would never see a case of this in children and it would be normal to just treat the symptoms. So, we're thankful that this was identified in less than half the typical time.
How did they find it? Well, that's another praise. We were blessed to get referred to Dr. Kang, a dermatologist with Kaiser Permanente, who also participates one day a week with a group of doctors at Oregon Health Sciences University. After Dr. Kang did a biopsy from a patch on Caleb's back and then wasn't sure about the test results, he set us up to bring Caleb to OHSU to a weekly consultation/study group in which he participates. Caleb (and Lani) went there last Wednesday at 7:00 a.m. and had about 40 doctors and specialists examine him in groups of about four at a time. Out of that collaboration came the diagnosis. This is not only a rare cancer, but is exceedingly rare in children. So again, we're thankful that this has now been identified and treatment can begin.
Dr. Kang warned us to be careful about reading about mycosis fungoides on the web because he knew that it sounds very dire out there. He is quite hopeful that with this early detection and with Caleb's age, that this can be quickly put in remission. Still, there is a lot that we don't know about it yet. We've written out a bunch of questions to ask the doctors when we do our "orientation" appointment week after next.
Here are some sites that provide information about mycosis fungoides. Be warned that this sounds really bad. We don't know yet what all this means in Caleb's case.
rarediseases.about.com/od/rarediseases1/a/101004.htm
emedicine.com/med/topic1541.htm
answers.com/topic/mycosis-fungoides?cat+health
webbmd.com (search results for "mycosis fungoides")
clfoundation.org
Please lift us all up in your prayers. I feel like we just started a journey down a long and unknown road. I know God will be with us all the way, but I just don't know where we're going! (Isn't that true about all of life!)
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15 comments:
You guys are in our prayers. I am so glad you found this doctor. That is an awesome thing! We had Kaiser and loved it even if it was an HMO.
Please keep us updated and we will pray hard!
Love, The Alexanders
May God hold you in the palm of His hand during this journey. Y'all are in my prayers.
We'll be praying for you all. What a blessing that God led you to this doctor.
praying....
Oh my!!! We are so praying for sweet Caleb. I let the boys know and they don't easily forget prayer requests like that- so tell Caleb his buds Sam and Silas are praying for him. We love you guys and can't wait to see you soon!
I said a prayer for Caleb when Patti directed me to this blog when you first found out about this. I'd be checking very now and then for updates. God loves Caleb...blessing to you and your family.
I did a search for "Dan's Life" on Google Blog Search and came across yours. I'll certainly remember your family in my prayers. Trust in Christ, brother.
My mother had this same cancer! If you have any questions I will be happy to answer--we did tons of research.
aleigha@gmail.com
Hi My five year old son was just diagnosed with this. I would love to exchange notes when you have a chance. Please write to Amanda at apowell@mmrlaw.com. I hope you son is doing well and I hope to hear from you.
RECENTLY I had a biopsy and this was the result "patch stage of mycosis fungoides.I am only 24 and I feel so devastated knowing that i have this kind of illness.it's so depressing. I go over the internet almost everyday just to read some notes. I still go to work everyday. But everytime i remember this makes me feel uneasy, uncomfortable espc when it starts itching and i couldn't bear it. what am i suppose to do now? i cannot ask much more things about this to my dermatologist. sigh...! anyway, here's my add if somebody could email me. thanks for the blog,cristine516@yahoo.com
Hello Dan and family, I just wanted to post because I have mycosis fundoides and first had symptoms at 16 yrs old. wasn't dx until 7 yrs later at 23 yrs old. I am now 50 I have lived a normal life other than being off and on treatment for the last 28 yrs but none of them really made me real sick, just an inconvenience. There is a news group called CTCL/mycosis fungoides that is very helpful with info and there has been a few parents with young children with this. So don't get too upset and hang in there... sending prayers to you and your family, Victoria ( puvagirl03@aol.com )
My little grandaughter who is 9 years old was just diagnosed with mycosis fungoides. We are going to a terrific doctor at Stanford Hospital by the name of Dr. Kim who specializes in rare lymphomic diseases. She is going through the ultra light treatments but yesterday we discovered two lumps under her arm pits and now we are worried they may be tumors (this is what her Pediatrician said). We are hoping to get in to see Dr. Kim ASAP but does anyone know anything about this disease and tumors? I can't find anything about it on the Internet. Thank you for the info posted here as it has been helpful with this rare disease especially in children.
Suzanne
Sorry, I haven't been monitoring my blog much over the last couple of years. I am very moved by all of you who have left comments about mycosis fungoides.
Here is an update about my son Caleb's condition. He received the lightbox treatments three years ago and has been totally symptom free ever since. At this point, we just do annual checkups with his doctors to make sure nothing is flaring up. They tell us that he will always have this cancer, but they are not certain at all if or when it might show up. It is sometimes difficult to not have fears or worries about what might or could happen sometime in the future; however, we thank God for the healing received so far and try to live each day enjoying the blessings of life we have received.
This Fall Caleb is playing football for the first time (he started playing three years ago at the same time he was in treatment, but had a lot of skin rash and was just too uncomfortable in a football uniform). He's a big, healthy boy and doing quite well; his coach tells me he will be a starter when they play their first game this coming Saturday.
You are in our prayers. You give us so much hope. Our son first began exhibiting symptoms when he was about Caleb's age although his diagnosis of mycosis fungoides was not confirmed until he was twenty five. The battle is now on and we are fortunate to have a dermatologist here in Saskatchewan, Canada who came to practice in Saskatoon from the Mayo Clinic. Please include us in your list of prayers. Thank you for your post.
Hi Dan, my 12 year old daughter was diagnosed 6 yrs with this disease. She underwent the narrowband light therapy for a short time. I wasn't a big fan of that treatment because I noticed how it seemed to dry and wrinkle her skin. We would do natural sunlight, but during the winter months that isn't possible. How long did your son undergo the light therapy before the MF went into remission? Any help or info you have would be greatly appreciated. It's so hard to get info on this topic and as a parent I feel so helpless. Thank you!
michelecrump@hotmail.com
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