Wednesday, September 21, 2011

Déjà vu.

I need to be writing Jackson's birthday letter (11 days late), but instead I'm updating on his health.

Last spring, I noticed a spot on his foot. We kept an eye on it and eventually called the oncology office. They weren't too concerned, but recommended we visit our pediatrician if we felt the need.

We go see our pediatrician in July. He looked at the mole and said it looked normal to him, but to be on the safe side he suggested we make an appointment with our dermatologist.

We couldn't get in with our dermatologist until late August and when our appointment rolled around, she wasn't concerned. The mole was on the small side, 2mm, and looked completely normal. She said she would remove the mole if it would make me feel better but that she didn't think it was necessary.

I decided, selfishly, that I wanted it off for peace of mind.

We made the appointment for the mole removal for Sept 15th, right after my big gender ultrasound. The offices are right down the hall from each other, so once we got our sono pics (of a boy AND a girl!) we made our way to her office and prepared for the process.

We were not worried--we had numbed the area with the same cream we had always used for his port accesses, and I recently had a mole removed without that cream and felt little discomfort so we thought the removal would be smooth.

NOT.

Poor Jackson almost came off of the table in pain. It broke my heart and I felt so awful. I questioned myself and my motives for getting the mole removed for the next couple of days.

***Pausing the story for a moment to say this: Mother's intuition is REAL. Listen to your gut. Don't waste time questioning yourself or worrying that nurses and doctors will think you are neurotic. A mother knows her child better than anyone and I swear it's only by God's grace that I noticed his tumor in May 2010 and paid attention to this teeny mole. I KNEW that mole was bad news. But when three separate medical professionals (that I admire and respect, not slamming them at all) did not show much concern (and rightly so--it did exhibit normal characteristics), I started questioning myself, even though my gut kept telling me to keep pushing. Bottom line, listen to your gut and don't look back or waste precious time worrying about what medical professionals think about your mental state. You are your child's best advocate and it's your job to ask questions, research and never stop pushing for answers. That is the best advice I could ever give someone who is starting down this path.***

When we left the office after the removal was over, we loaded up on candy to console Jackson and headed home.

We were not the slightest bit worried--no one else had been, so we truly expected a phone call saying all was clear.

Fast forward to yesterday afternoon.

About 3:30, the boys and I were sitting down with juiceboxes and snacks. I realized that I had not gotten that call, and I decided to check in to see if the pathology was back.

After about 8 minutes on hold, I was told that pathology was back but that I would have to be called back later.

Uhhhh. Cue freak out.

I went from not being nervous at all to being level 15 nervous.

A very long hour and a half later, the dermatologist herself called me back.

When she sighed before she started talking, I knew it wasn't good.

When she apologized and told me she'd never question me again about taking a mole off of Jackson, I knew it really wasn't good.

We talked for an hour last night and again this morning for half an hour.

The pathologists diagnosed the mole as a "severely atypical mole with indeterminate biologic position and behavior". Basically, an very abnormal mole that they can't say what it will or won't do. In their report, they say that they are "considering melanoma, but not favoring it" as a more definitive diagnosis.

The main pathologist said that the mole showed several cancerous characteristics, but also showed several signs that made it him believe that it was benign. This is where the Déjà vu kicked in--that is exactly what happened after Jackson's original biopsy in May 2010. They knew it was a tumor--but it took a few days to determine what kind of tumor. It had both benign and malignant tendencies.

Since this mole is so severely atypical, the pathologist recommended that it be treated as if it was in fact cancerous.

Right now, we have a surgical consult next Wednesday with the surgeon that we have previously used for Jackson's biopsy and port insertion/removal. Most likely, according to the dermatologist, he will remove more tissue on Jack's foot to make sure that all cells are normal. We won't know how much tissue that will be until we meet with him. The dermatologist mentioned last night that it is possible that he could need a skin graft if a large amount of tissue was removed. The foot just doesn't have a lot of extra to pull from.

Another concern is why. Did the chemo and radiation cause this (a huge side effect of treatment is secondary cancers)? Or is his little body just genetically pre-dispositioned to create atypical, cancerous cells?

I don't know which one to pray for.

So.

We kinda feel like we got pushed off the cruise ship to the bottom of the ocean. We were floating along happily, being normal and loving life...then bam. Here we are again, treading water and gasping for air.

We may be struggling, but our sweet boys know no difference between yesterday and today, so normal we must be.

We have a BIG day Saturday--the Heroes for Children 5k and the boys birthday party--and nothing will derail those plans! The boys are way too excited.

If you want to support The J Team in our endeavors to raise money to support families fighting childhood cancer, you can sign up HERE to be a virtual runner (enter in The J Team), or you can simply donate to The J Team HERE (click on 'Make a Gift'). All funds raised go directly to aide families just like ours.

In addition to this new development, Jackson's three month scans are on Monday, October 3rd.

Please pray that Jack's scans are clear and show no signs of cancer.
Please pray that the surgery can be scheduled soon.
Please pray that minimal tissue is needed.
Please pray that the tissue is normal and NOTHING is cancerous.
Please pray for complete and total, life-long healing.
Please pray that this is just a bump in the road and not our new road.

So incredibly thankful for all of the support, love and prayers.



11 comments:

  1. I'll be praying. Honestly, I've never stopped praying for sweet Jackson since the very first time I read your blog. I think of your precious family often.

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  2. ohhhh man oh man. Why can't these kids catch a break! I agree the mommy instinct is REAL and everyone should listen to it! I will be praying and praying hard! Oh Lindsay I know how bad this sucks but try to stay positive!
    With much love!
    Beth & Keegs

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  3. I will be in prayer for sweet Jackson! Good for you for stinking to your guns on this. I e-mailed the MOPS moms with a link to this post as well. We have some mighty prayer warriors in our group.

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  4. Oh Lindsay, I'm so sorry to hear this. I will take your list to my small group and we will be praying for Jackson. I know I just met him 1 time when I printed his sweet little hand, but I've never forgotten him!

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  5. Dear Jesus hold sweet Lindsay close tonight. Please make the necessary appointments come together quickly and bring peace to sustain this family in the meantime. Lord we ask you to make all of the cells in Jackson's foot clear and make his body strong. Amen. Will keep praying!

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  6. You are the strongest person that I've ever known! I'm praying for all of you guys and that Jackson just keeps on going being that sweet little ninja turtle! I can't be there on Saturday because of my move but I'll be there in spirit. I hope we can go out to dinner very soon, minus the food poisoning. :)

    Love you!

    LB

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  7. Praying for all your requests for Jackson! Praying for peace for you.
    Looking forward to seeing you on Saturday and giving you (and your belly) a big hug :)
    Keep the Faith!!!

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  8. Hi, I just found your blog and I just wanted to say that I'm praying for your little boy! My nephew had a very similar finding on the bottom of his foot as well. He had to have more surgery to get a clean margin and the surgeon also told my sister that a skin graft was a possibility. Thankfully there was enough skin on his foot that this wasn't necessary. My nephew is 7 now (it was removed when he was 1) and doing great; he had no problems. Also, I just wanted to say: moles on the bottom of the foot in kids are really really hard to diagnose and can oftentimes have those weird atypical features, but may not necessarily behave that way. I'm hoping and praying for the best for your little guy!

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  9. Oh Lindsey, I am so sorry you are going through this. Jackson is always in my prayers so I will keep them going and keep your specific list in my prayers. Can't wait to see you tomorrow. Your family is such a sweet and special family.

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  10. Prayers always! Love you and now I need to pick up the phone and schedule my Monkey's next scan a phone call that turns my stomach every single time.

    On the bright side I am over the moon for you and your newest son and daughter. XOXOXOXOXO

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  11. Can you believe I just read this news?? I've been slacking on 'keeping up' with much of anything here lately . . . We will def be praying!

    We'll be seeing you this weekend and hopefully will only hear great news!! love you

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