Madi Update: Still doing well

Madi continues to progress well.  All of her motor slowness on the right side seems to have resolved itself.  We discovered from the first visit with the OT that her right hand is actually stronger than her left hand now and she has no visual "blind spots," which we were concerned about.  Her depth perception on her right side is still healing, but gets better everyday.  The one lingering (not permanent) problem is that the motor control in her eyes is still not up to its pre-surgical state.  This means that she gets really tired and overwhelmed after a few minutes of doing things she loved before: reading, sewing, art, etc... This has proved challenging, since she essentially has nothing to do during the day.  She had to go back on the steroids due to a relapse of symptoms (headache, nausea), so the same horrible steroids symptoms have also returned.  They are weaning her off of that again this week and so hopefully she will be feeling more normal soon. 

But as successful as the surgery and tumor resection was, this stupid cancer is known for shooting out its tentacles into the surrounding brain tissue and spreading microscopically so that complete removal of every part of the tumor is nearly impossible.  This is why they specify that they removed all visible tumor, because they know there is more of it lurking in there.  For this reason, Madi will still need to do radiation and some sort of complementary therapy.  I had a friend ask me tonight, "but how will they know if they got it all if they can't see it?" And the answer is: we won't know unless the tumor comes back. She'll need an MRI every 3 months to watch for it.  If it does come back (and it usually does)... well, we just aren't thinking about that now because the prospects for recurrent glioblastoma patients aren't good. 

We also received her genetic test results the day after the second surgery, which came with two disappointing findings. First, the first genetic test was not correct; her tumor tested negative for the rare genetic mutation more common in adults than children. That one was a hit b/c it could have potentially meant a better-than average outcome.  So that put us back to the "average" prognosis. Second, her cancer has a mutation that makes the tumor resistant to the first-line chemo drug.  So it looks like we may be down a tool in the treatment program.  And the cancer tends to come back more quickly for patients who only have radiation without chemo.

Right on the coattails of this miraculous surgery came lots of bleak news.  I think that week stands as the darkest week I've had so far.  I thought I was handling things ok, but on a solo trip home from the hospital late at night, I stopped at a stoplight and my body just  burst into sobs.  It felt almost involuntary and I could not stop crying for a long time.  I sat in our driveway and prayed - no, begged- for God to lift the burden I felt.  I sobbed and said aloud, "it's too heavy," over and over again. 

I won't lie. The burden did not immediately lift.  Every day, I felt like I was slogging around in mud.  Every time I saw Madi, I would cry.  I would lay next to her and hold her hand and silently weep.  I felt empty and sad.  All I wanted to do was be with her and my other kids, but whenever I was with them all together, I got overwhelmed and would inevitably snap at someone.   It was a horrible week.  Slowly, I have come out of this funk and feel like my burden is being lightened.  I think this is a very natural part of grieving and I accept that it needs to happen.  I'm sure it won't be the last hard week I have.  The one thing that seems to be pulling me out is my focus on eliminating the fear from my daily thoughts.  Whenever I get scared, I start sliding.

I kept thinking of (and finding kinship with) the children of Israel who saw miracle after miracle before they were released from bondage.  They speedily fled Egypt only to find themselves stuck in front of the expansive Red Sea with their captors pursuing from behind with vigor.  I am quite sure that not just one of them wondered, "Now what are we going to do??!!!" I'm sure many were terrified of what would happen to them.

We are in our "now what??" place.  We have seen so many beautiful miracles, but the way ahead seems... impossible, really.  We stand in front of our Red Sea, praying that it will be divided and we will be led through unscathed.  I truly have no idea what the Lord's plan is for our family or why all of these terrifying things are happening.  But I really believe that this pain and heartache and discomfort we all feel is temporary.  We are created to be happy, I really deeply believe that.  For me, fear is the one thing that robs me of the happiness I often feel these days at being with my family. 

Maybe that is why I have found so much peace and comfort in this talk that one of the apostles in our church (Deiter F. Uchtdorf) gave during a worldwide conference a couple months ago.  He talked a lot about how fear can block progress and how it "never has the power to change hearts." Really nothing permanently good can come from fear. 

I am actually teaching a lesson at church on this talk tomorrow.  And by teaching a lesson, I really mean leading a discussion among a group of incredibly interesting and witty women.  I love this group.  I feel like a bunch of war veterans sometimes talking about our experiences in the trenches.  Every week, we seem to have a handful of new faces joining in the conversation and it's so fulfilling to see life from so many different perspectives.  If you are local to the Boston area and you'd be interested in hearing/participating in this discussion on fear vs. faith/love, please come!!! I would love to see you!  The class starts at 1:30pm at 15 Legdewood Place in Belmont (not the huge temple, a building below it), and it lasts an hour.  We meet downstairs on the right-hand side of the building if you are looking at it from the front. 

I have so many unwritten blog posts in my head.  I sure wish I had more time to write.  Trying to at least get the important stuff down!

Comments

Amber said…
These thoughts resonated with me exactly. Everything you've felt and are feeling, I had my exact same moments. My moments where I look at Henry and just cry. And so much effort goes into actively fighting fear. You're a warrior and have the right attitude and perspective. Thank you for the update!
Becca Pizzi said…
Keep fighting Team Madi! We are here for you ALWAYS.
Mindy said…
Jen, Ellen Patton told me about what Madi and your family are going through. I am praying for all of you. I wish I were closer so I could come clean your bathrooms or take your kids to the park. Love to all of you.
Mandy said…
Hey beautiful friend. Sending you love and prayers. I too believe in miracles and will be fasting and praying for your girl.❤️
Elise said…
Thank you for sharing this. You are an example to me in so many ways. I wish I could have been in that RS lesson you taught with all the warm and witty women! I'm praying for Madi and so are my kids. Your thoughts about fear reminded me of the 23rd Psalm--I know Christ can walk you through this.

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