Friday, October 7, 2016

In the dark . . .

 Scans are NOT for the faint of heart.  Scan day is long and arduous so when you get a chance to sneak down and visit friends in between appointments, you take that opportunity.

Sweet Mistha was more than happy to play peek-a-boo and try to touch MacKale and his hair through her window.  She's grown up so much and is such a big girl now.  We all pray each night for this little peanut.  She is a special friend from the 9th Floor.

It was bittersweet walking on the ninth floor after having left it June 3rd.  It feels comfortable and familiar.  We see so many of the faces that we hold so close to our heart--nurses, patients and staff.  They will always be so important and special to us. And yet . . . this is a place we never want to have to call home again.

So scans . . .
Echocradiogram . . . good.  His heart is functioning well despite all the poison that we pumped into him.  Audio test . . . mostly good.  He has lost some high pitch frequency hearing, but we'll take it.  I say it's an excuse to ignore me when I'm yakking at him.  X-ray . . . good.  Looks like the cadaver bone is starting to assimilate and mesh with his own bone.  CT scan . . . I hate CT scans.


It is a necessary evil. You see, osteosarcoma has this annoying tendency to show up and metastasize in the lungs.  This is why we do these scans every three months.  Even though MacKale had 99% necrosis, telling us that the chemo worked on his tumor, there are no guarantees that it won't come back!  It happens! 99% necrosis or not!  So we do CT scans.

Unfortunately and fortunately, CT scans are so good, they can pick up the smallest . . . itty bittiest of nodules, and yesterday that is what they did for MacKale.  Instead of the words, 'clear scans' we got 'several very small nodules.'  Now nodules can be a number of things . . . scar tissue . . . inflammation . . . infection . . . or metastasize osteosarcoma.  At this point, our doctor is hopeful that it is not mets (metastasized osteosarcoma), but we really don't know . . . we are literally in the dark.  And because of that, she isn't confident that we should remove MacKale's port just yet.

Of course, as a mom, my head goes immediately to fight mode. Doctor Mitchell knows this about me.  This is why I love her.  She literally has instructed Mike and I to worry about MacKale being able to drive in 4 years . . . not these nodules!  I'm worried about both!  

But really . . . I don't know what or if we are fighting anything.   These 2mm nodules are so small, seriously the size of a grain of sand, no surgeon is going to go in after them either way.  It's literally a wait and see game.  We are waiting four weeks and scanning again.  Hopefully, we will know something one way or another then.

MacKale is in good spirits.  His attitude is never wavering and every faithful.  "We don't know what it is, so I don't care about it."  He's right, of course.  We just need to keep moving forward, we need to remain faithful that 'God is sending the rain.'  We just need to prepare our fields to receive it.


So that's where we are.  We are in the dark, but holding onto our faith . . .ever thankful that God continues to bless us with your love and support.

Please please please . . . continue to pray for MacKale.  Pray that those nasty nodules disappear, that his body remains strong and that cancer has left his body forever.


14 comments:

  1. Praying for you all and that the next set of scans show up clear!

    ((Hugs))) Jennifer

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  2. Continuing to pray! Thanks for the updates. They help us know how to pray. We think of you often and pray for all the nurses, doctors, and anyone that is in MacKale' s path.

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  3. Continuing to pray! Thanks for the updates. They help us know how to pray. We think of you often and pray for all the nurses, doctors, and anyone that is in MacKale' s path.

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  4. Yes! I wish I could wrap my arms around you!

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  5. :'( I have tears as I imagine the feeling of hearing that about my child. Praying that they will be gone in a month and are nothing to worry about. Grateful you have a wonderful doctor and nurses who understand and care. Mac's little friend is adorable.

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  6. Still praying hard! You are always in my thoughts and prayers. Bless you all!

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  7. You continue to be in my thoughts and prayers! May our Heavenly Father protect your family and give you strength for each new day.

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  8. Marsha,
    We pray for your family and for MacKale every day (and extra when one of us is wearing our orange #7 shirt). You've got this.
    With Love,
    Jamie

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  9. Always praying for your sweet family. :o)

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  10. Brave and bold boy he is, may he get well soon.
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