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January 30, 2013 at 3:11 am #20973
I now know only two stages in life: before cancer and after cancer diagnosis.
On Jan 3, 2013 my 7 year old son was diagnosed with melanoma. Like a bolt of lightening. Since that day, our lives have been upside down with so many doctors and appointments – all focused on curing my son. We have the support of the excellent doctors at Children’s Hospital in Dallas and a wonderful melanoma expert from UT Southwestern all guiding our treatment.
Surgery was performed last week and a WLE (2cm all around the initial tumor) and 5 lymph nodes removed. We should receive results tomorrow when we meet with the doctors. Plastic surgeons who repaired the wound on his small arm, oncologists who are overseeing his care and the surgeon and melanoma expert who are attacking this aggressively.
I cannot express in words what we’ve all been through. I can’t sleep, got sick and feel like a zombie at work – my family keeps me going. My son, he takes it in stride and plays non-stop. I pray that tomorrow and Friday bring us good news that this monster has not spread. He should at least one day actually get a tan or something, drink beer, spin the bottle or smoke some pot – something that can maybe explain the “why me”.
I have spent a week reading through these forums and am amazed at the strength and courage I’ve seen. I haven’t seen many who are in my situation, as I know it is very rare, and I don’t wish this on any parent. I was told only one child walks through those doors each year – I guess that was us
😥. But my hope is the same for everyone – that we find a way to tackle this horrible cancer that has impacted so many lives and loved ones.
Thank you for reading our story. I guess I am just afraid. But we are fighting a war that we have to win. Taking another deep breath… Melanoma sucks.January 30, 2013 at 4:02 am #58848lunchladyParticipant
My heart goes out to you! I don’t know what to say. So sorry that you qualify to join this forum. May God bless you and give you strength.
LolaJanuary 30, 2013 at 5:48 am #58849abdormaParticipant
I echo Lola — I am so sorry that you are going through this and cannot imagine having a child have to deal with this disease.
You will be in a much better place when you get the pathology reports —- it is always better to know what you are dealing with than letting our imaginations run wild. Sleep will come.
Will keep you and your family in my thoughts and prayers. Hang in there!
AnnJanuary 30, 2013 at 1:18 pm #58850
We should all be like your son, continue to be playing and having fun! So sorry to hear this and you are not alone here. There are not many other children with melanoma as it is a rare occurence. I would make sure his original pathology and new pathology get a second opinion from a leading institution, such as Sloan Kettering or UCLA. Oftentimes, kids have a different type of lesion, called Spitz Nevus which looks like melanoma, but is benign. Always good to get second opinions. Please let us know how this pathology turns out.
We’ll be thinking of you.January 30, 2013 at 6:32 pm #58851
Thanks everyone. We are back from the doctors. His arm is healing well. The results are not in yet, but should be by Friday when we return to meet the surgeon and melanoma specialist. We actually are on our 4th opinion on the mole/tissue removed initially- this path is from Children’s. We are getting some good news and are awaiting the final report but it looks like it may be a spitzoid melanoma. The mole was classified as a spitz nevus initially (visually) which would have been benign and we scheduled a convenient surgery date in December to allow him to heal. To our surprise, we got some unexpected news that it was highly atypical and malignant melanoma. We received two additional opinions from dermapathologists and they did also classify it as less malignant than initial diagnosis, but the surgeon and melanoma specialist would not take any chances and treated it as if it could be more aggressive. It was already 3.8 mm deep.
My understanding is that the new classification puts it into a less dangerous category and less likely to spread. Let’s see what the lymph nodes look like. Then we can maybe get some stress relief and some sleep.January 30, 2013 at 10:13 pm #58852
I ran this by our scientific advisory board because I have run into this before and want to be correct is what I say. Here is their advice: “There are benign proliferations called Spitz nevi and there are melanomas that have some of the attributes of Spitz nevi.
Distinguishing them can be tricky. To add to the trickiness, some Spitz nevi (benign) can have cells in the regional nodes.
Bottom line: HAVE THE SLIDES READ BY AN EXPERT IN THE PATHOLOGY OF MELANOCYTIC LESIONS, e.g., David Elder, Marty Mihm…
Mary Mihm you can find at
http://www.drmihm.com, and David Elder is at UPENN. I would have all of your slides shipped to one or the other. These are the experts you want. Then hopefully you can rest easy.January 31, 2013 at 2:28 am #58853AnonymousGuest Laxmom, my heart goes out to you and your family. I’m praying for really good news.
JeffJanuary 31, 2013 at 2:52 am #58854JilllyParticipant
Sending hugs and prayers for you and your son. Stay strong and know that many people are praying for good news.
JillyFebruary 2, 2013 at 9:13 pm #58855
Well, no results on Friday as we had hoped. Apparently all the slides have been sent to Dr. Cockerell, another dermatopathologist, to ensure a consensus opinion. They will call us next week with the full results. I have looked up Dr. Mihm and Dr. Elder and will request that one of the two also look at the slides once local teams here are done. My son’s arm is healing well. No edema from the lymph node removals and swelling continues to subside on the wounds. He’ll likely have some PT to ensure full use of his elbow (tumor was a couple of inches above the elbow on the back of the arm). Doesn’t seem to be slowing him down much but he does protect it and hold the arm in a slightly bent position to avoid stretching the skin too much. WLE stopped just short of the elbow bend so that helped tremendously in the plastic surgeon’s reconstruction back there.
WendyFebruary 2, 2013 at 9:24 pm #58856DadZGirlParticipant
I am holding my breath for your son and family.
I have re-read your initial post here at least four times.
Glad to see your updates and wishing and praying for the best news possible!
LauraFebruary 3, 2013 at 6:53 am #58857janibraskasParticipant
Thinking of you and your family. Praying for good results.February 4, 2013 at 9:22 pm #58858LaurieParticipant Wendy,
I have your son (and your family) in my prayers. Your son seems to be handling it well – it is amazing how resilient children are. PT may be a good idea as well, especially since he is so young and still growing.
The waiting is the hardest part and unfortunately it takes your brain to go to those really dark places. Try to stay positive during the wait; although it is very hard to do that. Please know we are all here for you.
LaurieFebruary 5, 2013 at 10:54 pm #58859
I hope you will send his pathologies out to the experts to be sure. Do you have any results from the SLNB yet?February 6, 2013 at 1:23 am #58860 No results yet. We were informed that we would hear something before the end of this week so a call could come at any time. They were getting another review from Dr. Cockerell whom the melanoma specialist trusted – and I guess a validation of the initial analysis.February 6, 2013 at 2:50 pm #58861 I hate to sound like a broken record, but you need a true expert with many years experience, and international reputation for discerning this difficult task of reading the ever so important slides of your son. Cockerall is a local dermatopathologist. I highly recommend you insist on an “outside” dermatopathologist, such as Dr. Marty Mihm ( http://www.drmihm.com) or Dr. Elder at UPENN or Dr. Bastian at Sloan Kettering. This is crucial in this instance! Melanoma is very rare in children and reading this pathology is very difficult. Shipping slides is very easy to get the top opinion.
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