Letter – June 16

below is the letter I wrote to friends & family this morning — wanted to let you all in blog-land know the good news!

Hello, friends and family.

I have good news!

First, Patrick has been released from the hospital, and we will fly
back to Florida tomorrow. It will be so good to hug our children and
be together as a family. I am looking forward to boring, normal days
hanging out at home, loving on them.

Even better, the biopsy results (along with all the other evidence)
suggest Patrick does have cardiac sarcoidosis. If we had to choose
between ARVD or sarcoidosis, we would for sure choose sarcoidosis!

Any tissue that has been damaged cannot be recovered; however, we do
hope the progression of the heart damage can be stopped and we hope
that the inflammation will disappear and any arrhythmias being caused
by that will also disappear. A sarcoidosis diagnosis gives us hope!

Though sarcoidosis may have a tendency to run in families, it
certainly doesn’t have the same genetic implications ARVD has. So
this is MUCH better news for our children.

So Patrick starts right away on a pretty high dose of an oral steroid
medication. He will take the highest dose for three months, then we
will come back to Boston for another PET scan to see if the
inflammation is responding to the steroids. If they are working, he
will take the steroids for about a year.

In the meantime, the doctors are still testing that biopsy tissue for
any other problems and to definitively rule out ARVD. They have also
sent off Patrick’s blood sample for a genetic screening for ARVD. It
would be very, very rare for him to have both sarcoidosis and ARVD
(like winning the lottery twice, according to Dr. Tedrow), but -for
the kids’ sake, we need to be as sure as we can be.

We still have a long road to recovery ahead, but there is hope that
Patrick’ s heart will not be severely damaged, hope that he won’t need
a transplant, hope that he will be well, and hope that our children
won’t face these same health problems.

All of this talk of hope reminds us of the hope we have in Christ —
the hope that has sustained us for the past month, the hope that even
if Patrick hadn’t lived through this, we would have an eternity
together with Jesus.

There is so much more we want to tell you of how the Lord has been
working for good and the people we have met, but we’ll have to do
that in installments so we don’t overwhelm you. :).

For now, I’ll leave you with the words of another J J Heller song that
has comforted me in the past few weeks —–

“You love everyone that I love
More than I ever could
Though my days are filled with trouble
Lord, I know you’re good . . .
Because You will never let me go
And I will never cry alone
And You will always be my home
And you tell me so”

Thank you all for your prayers and encouragement.



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2 responses to “Letter – June 16

  1. Lana

    So blessed by you and Patrick through all of this. Your hope in Christ shines brightly, and I am willing to bet that everyone you’ve met in all this is blessed through you, too. I rejoice in your rejoicing and continue to pray for healing.

  2. So glad that you got good news!

    I have been on short term steroids; they played with my mind and caused feelings of anxiety and panic. I didn’t get a whole lot of sleep. I know I would be worried about a three month course. I will continue to pray for your family — prayers for minimal and tolerable side effects, no arrythmias!

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