Because so many are asking, and we really appreciate everyone's prayers and concerns, I wanted to post a short update on Gideon. However, there isn't a lot of news yet. Because of the difficulty in diagnosis (which the article below does more to explain than I could) and the rarity of it, things have moved quite slowly.
After his surgery in Seattle, the doctors there wanted to ignore the pathology and assume that by removing the spot on his face, he would be okay. However, we were not comfortable with the "ignore the pathology" part - their reasoning was that it is rare for 3 year olds to get melanoma - so the odds were in our favor. But we are talking about OUR 3 year old. And we've been through enough with Elijah to understand that "very rare" doesn't mean "doesn't happen."
We also (Providentially) were able to talk with some very experienced moms who have walked this road before us (two are in the article) and based on their experience, it was definitely necessary to keep going to get a diagnosis we could be confident in. So we were referred to St. Judes Children's Cancer Research Hospital in Memphis.
Due to the long distance between us and them, they want to run as many tests as they can here first before bringing us there. So first they started asking why a CGH hadn't been done. This is a test they do on tissue they already took in both the originally shave biopsy and then the Wide Local Excision surgery. It should tell us exactly where the extra chromosome is - and knowing that will tell us how to proceed (kind of.) So in order to do this, they had to track down the slides, which have traveled from Vancouver to San Francisco to Seattle to Memphis and once found were sent back to Vancouver, where they are currently being tested.
They have also ordered a Sentinel Node Biopsy (which, really, why didn't we do this sooner) which will be done in Portland by the same surgeons who operated on Elijah last year - so thankful to be doing this close to home! That should be sometime in the next two weeks.
They've also ordered a full body scan since Gideon's lymph nodes in his neck continue to be quite enlarged (there are four that you can distinctively feel) and as of ten days ago, the ones in his groin are now also swollen.
Hopefully, all of these results together will give us a clear picture of what is necessary for treatment. I would love it if they all came back clear! But either way, we are thankful in a way that the process was slow, it has given us time to breathe and enjoy the summer and to be reminded that this didn't surprise our God and He chose this (whatever "this" is) for Gideon and for us at this time. And to be reminded that we were called to go on these upcoming missions trips, so we will still go, because we know that God called us and He will provide in EVERY way. So we don't have to fret. We can rest well in His promises.
THE ARTICLE I MENTIONED ABOVE:
http://abcnews.go.com/m/story?id=19774895&ref=https%3A%2F%2Fm.facebook.com
Deanna,
ReplyDeleteI've been following all of this in the shadows, both out of concern for Gideon, but also because Cora had a spitz nevus taken off of her arm last month. The path report came back as "Spitz nevus with some atypical features" but our pediatric derm at doernbecher feels strongly that we can watch/wait without any risk. I basically agree. I knew it was a spitz on her arm, was glad to hear that we got clean margins, felt justified the drama and expense of excising it, but totally can identify with how nerve wracking the process you've been going through has been. Just wanted to say: we are praying for you guys. For clear answers, for decreased lymphadenoaphy, for clean sentinal nodes, etc. And we are praying for your Uganda endeavors, too! We are in the process of signing on with WHM, hoping to start a new project in Latin America someday soon. Would love to see you and catch up someday. Hope all is well!
~~ Abbie Nelson
Oh how I would love to see you! How exciting that you are also planning to go with WHM. We love them and maybe someday we will get to come help your ministry with a short term trip! Plus I would LOVE to pick your doctor brain about all this confusing spitz stuff. Our confusion comes in that the first path at Vancouver clinic came back with melanoma and positive k-1 immonostain at 12percent proliferation. Then they sent it to San Francisco, where all numbers came the same, but they diagnosed as "extreme example of spitz nevus with atypical features" and recommended Wide local excision, sentinel node biopsy, and CGH study to determine further. Then Seattle said (basically) that the patholgoy says melanoma, but that just doesn't happen in 3 year olds, so we are probably safe to watch and wait. Anyway, any help you have would be appreciated.
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