Saturday, September 12, 2009

Spitzoids are not those things you shot out of a straw in the 3rd grade.

I've blogged before but wasn't very good at it. I think I had one follower and she gave up on me after I didn't update for a year. So honestly, I can't promise I'll be any better at this blog but I think a lot of people would like information and I'm hearing that hundreds of people are praying for us and it's overwhelming in a really incredible and humbling way.

On July 14th I took Rachael to see her doctor because she had a little mole on her left arm that looked odd to me. Not knowing anything about moles I didn't think much of it, especially because Tom has about a billion of them and I just thought, "poor girl has her daddy's skin". It had been there maybe 2 months but one night she said, "It kinda hurts," and that seemed really strange. So we're there in her doctor's office and I'm all ready to hear, "Mom. It's a mole. Deal with it." Instead I hear..... crickets. Then.... "hmmmm." Then he gets out his super special goggles with magnifying glasses and lights and straps it on his head and goes, "No, I don't like this at all. This is coming off today."

And that's just what he did. He took it off. In his office with a bit of numbing juice and a scalpel. I watched the whole thing. And I didn't pass out! Rachael whimpered during the shot and then was completely stoic. She is so brave. I asked her doctor if he was worried and he said, "No. I have already prayed over her. I will pray again when I get home and I am not worried." That was good enough for me so I wasn't worried either.

This "no big deal" ended up being a little tumor that caused quite a stir for its rare-ness. Baylor, Mayo and MD Anderson all had a go at discussing it and though they didn't agree on exactly what it is, they agreed more treatment was necessary. The term they initially used to describe it which, if you were to google it would probably confuse you - or maybe it's just my brain that cannot seem to compute the thing - is "spitzoid". Here's one of the most concise answers I've found for what exactly a "spitzoid" is.  From the article:

"Spitz melanomas are completely benign (non cancerous). If left alone they will cause no harm but because they are difficult to tell from malignant (cancerous) melanomas they are often removed for examination under the microscope, to confirm the diagnosis. Once removed the problem is completely cured and will not come back.
Very rarely a cancerous (malignant) melanoma can look like a Spitz melanoma. When this happens the tumour is sometimes called a Spitzoid melanoma. Spitzoid melanomas behave like other malignant melanomas."
 It was pretty easy to cling to "completely benign" and "very rarely".  Actually it was terms like that that made the treatment all three medical establishments were recommending seem quite invasive.  They wanted to do a "wide local excision" and a "biopsy of the sentinel lymph node".  What this means is that they wanted to cut a large chunk out of her arm where her local doctor removed the original tumor to make sure there were no more cells hanging around looking to start trouble and they wanted to take one or two of her lymph nodes out so they could cut it up and make sure the cells hadn't travelled.  Which would make it malignant.  The "very rare" thing.  And that would be bad.

They did the surgery and I was really shocked out of all denial when I saw her wound.  It's hard to see perspective here but it's a little over 3 inches long.




Plus she has a small scar under her armpit where they removed 3 lymph nodes.  But as ugly and shocking as that was, I wasn't worried.  I mean, I was concerned but I was not spending a lot of time fretting.  And after they did the surgery I didn't hear back from the doctor like I thought I would the following week so started believing it was fine.  We went to a long planned trip to Disney World (I'll post about that at some point) and other than being VERY diligent with sunscreen and hats and shade-seeking, we put it out of our minds.

Yesterday we had an appointment scheduled for stitches removal.  I was very confident that they were going to give us the "all clear" and we'd schedule a follow-up.  When the doctor came in he was all smiles and I said, "So, do we have news?" and he said, "As a matter of fact we do."  Still all smiles so I'm thinking, "Phew!  I knew it was fine."  Then he turns to Rachael and says, "Rachael, mommy and the doctor have to do some really boring talking.  Would you like to go to the playroom where it will be more fun?"

He was being cheerful and upbeat for her.  Mind started reeling.

We take her to the playroom, he puts his arm around my shoulder and says, "I can count on one hand the amount of times I have sent a child out so I could talk to the parent alone."  I said, "This isn't good news." And he said, "No.  It isn't."

I was alone and I didn't want to break down.  And the not breaking down was making me really naseous.  And then my brain sorta went numb and I went into "get information" mode.

Rachael has "at least" stage 3 melanoma.  They found cells in the lymph nodes.  So that sounds really horrible and if one were to spend a lot of time googling, one might end up in a puddle quivering under her computer table but one has studiously avoided google so one will simply tell what the doctors said.  Which is much more encouraging than I understand google is.  Google does not give hugs and say, "You will be okay".  Google is like that mean woman at work who actually tells you that you do look fat because you were stupid enough to ask.  The best way to deal with her is avoid her and certainly don't ask her questions you don't want to hear the answers to.

Her oncologist believes she will grow old and give me grandbabies. He actually said that.  For reasons that doctors and researchers do not know, when children are under 10 years old and they are diagnosed with the ultra-scary "malignant melanoma", their little bodies seem to fight and beat it.  If she were over 10 and they found melanoma in her lymphatic system their enthusiasm would be a bit more cautious but the children they have studied and followed who got this around the same age as Rachael are all still alive.  She is in a VERY tiny group.  Well under 100 children but they have all gone through the treatment that they are recommending for Rachael and they are all still here.  So that news allows me to breathe and continue to function and even laugh.  The other good news is that none of the treatment involves chemo so she will not lose her hair.  That makes me almost cry with gratefulness.

What is to come is another surgery when they will remove all the lymph nodes under her left arm.  This will happen on September 24th.  We will head back to MD Anderson on the 23rd for pre-surgery appointments and she will have an overnight stay after the surgery.  Her surgeon has warned me that pain management will be tougher this time.  She will also have a tube inserted for drainage and on her other arm she will have a picc line inserted at that time.  There are a few possible complications and the one I am most concerned about is that her body will not adjust the flow of drainage to go to other lymph nodes properly and that will result in chronic, painful edema.  I plan to be on my knees frequently asking God to work in her body so she doesn't have to endure that.  The surgeon says it can be lifelong.  The chance is small but friends, we have already learned the "very rarely" does not mean "won't happen".

After she has healed completely from the surgery we will begin interferon.  In an attempt to find a good link for interferon and learn more about it myself I ended up googling.  This was not a good idea.

I love her so much.  She is so beautiful and full of energy and life and potential.  I long to see what kind of person she will become and cannot imagine having it cut short.  I know God gives us strength but it comes from a place I don't possess yet.  For me, that strength is unimaginable.

Deep breath.

Okay... so what the doctor told me is that the first four weeks the interferon will be given through an iv using the picc line on a daily basis and will likely make her quite sick.  After that she will have weekly injections that we can do at home (again through the picc line) and those will last 48 weeks.  The next few years will involve lots of tests and pricks and scans and trips to Houston.

She's so innocent and little.  And she has an unbelievable joy of life.  She is so brave and she has utter trust and complete love for Jesus.  Right now she is struggling though with the question of why God didn't answer her prayers in the way she wanted.  We talk about it and I explain the best I can but it's so hard.  I tell her it's okay to ask Him.  I sure do.  Ultimately though, I know He has a plan for her and that's what I tell her.  That she's special.  And that no matter what He loves her.  And that despite anything hard we go through, this truth remains... God is good.

But she's going to be sick I'm afraid.  And she's going to hurt.  And my heart is breaking.

25 comments:

  1. Oh sweet friend. My heart is heavy for you BUT it is also full of trust and faith that He will give each of you ALL that you need. It is so perfect that He tells us to lean not on our own understanding becuase things like this are almost impossible to understand. What we do understand and know is that He loves you and Rachel even more than you do and He will never leave her side. You are right...God is good. I am glad you are going to try to blog to keep us updated. Thanks. :0)

    with much love
    ~robin

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  2. I'm so sorry that your beautiful girl is going through this, and that you are. My prayers are with you for strength and healing throughout these hard years.

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  3. Oh my goodness. I had no idea that all this was happening. What strength and grace you both have. I'll be wishing the best for her, for you, for your family and holding you in the light. - creme

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  4. Did you ever get a second opinion from the Doctor in CA that does genetic testing on spitzoid tumors? I would do that. Miracles do happen. It would be so incredible if it wasn't cancer after all.

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  5. Dear Danielle, Wow!! I did not realize ALL THIS was going on your lives! Our hearts go out to you, Rachel, and your family. Rachel is a wonderful treasure! Please let us know how we can help. We are keeping all of you in our prayers!

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  6. We just heard the word "spitzoid" for the first time today. Our 5 year old son developed a little "wart" at the end of the summer and I thought nothing of it. But when he went for a well visit I pointed out that it hadn't responded to the freeze at home treatment. I had the same crickets... hmmm... this doesn't look good response. He saw a dermatologist a couple of weeks ago and they did a biopsy. We got the results today and are working off very little information to schedule the next surgery -- to remove the whole thing. So far, no one has said anything about lymph nodes. But they are calling for more pathology testing. As I pray for Colin, I'll pray for Rachel too.

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  7. i had a spitziod melanoma too last year and I was 11 it wasn't harmful but they did do the BIG exition on my left leg behind just above the ankle.... they did two ops the one was the big one where they did the extional and removed a lymph, the second was a skin grapht and i am healed now after 7 months of pain.... i have lymphoedema in my leg but happy i didn't have cancer, i missed a term of school but i am running around and i am playing netball tomorrow..... good luck with your journey and you are in my prays and i know what you are going through....love Emmie

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  8. I take issue with the quote "Spitz melanomas are completely benign (non cancerous)." There are no "Spitz melanomas". There are Spitz nevi (benign) and Spitzoid melanomas. Spitzoid melanomas are, as the name implies, melanomas (i.e. not benign, i.e. cancerous) that look like Spitz nevi. It's difficult, sometimes, impossible, to tell them apart. But I wouldn't want somebody to read that quote and think Spitzoid melanomas are benign. I hope Rachel is doing fine.

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  9. My six year old son was diagnosed with Spitzoid Melanoma at three years of age. His was on right lower calf. We are St. Jude patients and have not had to have Chemo, Radiation, etc. We did have three surgeries. Excision looked like photo above. So far every appointment has been clear. Yesterday, Jaxon had a suspicious growing mole removed from his head. He also is schedule for an MRI of the neck next Wednesday due to neck pain and swollen lymph nodes. We will not know any results until next week. I am praying for your child and mine. It is scary because this type of Melanoma is rare and hard to diagnose. Back in 2009 before we had a solid diagnosis, we had a team of Oncologist study his biopsy. Results were shattering to us. Anyway, I hope all is well. Trayborn114442@gmail.com

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  23. I'm so glad I came across your blog. Although scary, I've spent hours online searching for pediatric melanoma and found it eerily quiet. My 9 year old son just had a large (well...1cm) "weird" mole removed from his scalp. I came across it last week as I was blow drying his hair - as a nurse, my heart stopped when I saw it and my inner voice shrieked "melanoma!" My son is healthy, plays every sport, and super intelligent - in gifted classes at school. We have no family history etc. Well, the biopsy result came back today as "many atypical cells - dx severe dysplastic nevus or melanoma" - and is being sent to another pathologist for a 2nd opinion. I'm totally freaking out.

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