Miracles

One of the things we've continued to do since Emmett's treatment began is to record the miracles we've witnessed along the way.  Since his very first surgery, we've often felt the hand of God and the strengthening support of guardian angels.  Over the past few weeks we've collected a list of miracles, small and large, that we wanted to share.

Emmett's left arm has been weak ever since his first surgery back in New Mexico.  Even before the surgery we noted that he was using his left hand less, and it had started to look disabled/handicapped the way he was carrying it, for lack of a better description.  He could grab things between his thumb and index finger, but the rest of the fingers were completely limp. There was little change after his first surgery in Boston.  Prior to the second Boston surgery, his left arm went completely limp at his side -- no finger movement, no wrist movement, no arm movement.  After the second surgery his arm remained limp, and the surgeon indicated she didn't know how much function she expected to return-only time would tell.  Gradually, as we made our way through the first round of chemo, he started to regain gross movement in his arm!  And then, about two weeks ago we noted a flick of his wrist!  How exciting!  And his arm and wrist control have continued to improve since (though they still have a long way to go).  We consider this a miracle, and pray the fingers are next!

Then last week another MRI was conducted at Massachusetts General Hospital in preparation for Emmett's proton radiation therapy.  The results showed that the tumor had shrunk significantly since Emmett's 4/20 MRI at Children's Hospital!  The doctors had not anticipated seeing much reduction in a period of just three weeks -- we're glad they were pleasantly surprised.   The take away is that Emmett is having a good response to the chemotherapy.  We count that as another miracle!

Another subject we haven't blogged much about are Emmett's lumbar punctures (LPs).  Lumbar punctures allow the doctors to do two things: test Emmett's cerebral spinal fluid (CSF) for tumor cells and inject intrathecal chemotherapy into his brain/spine to treat any malignant cells.  It's very important to keep the cancer from spreading to Emmett's brain because they won't do cranial radiation on children under the age of three, and radiation is a key element in the Dana Farber protocol.  Emmett's initial lumbar puncture in New Mexico came back clear.  After his most recent spinal surgery (the one where the tumor had regrown in 10 days and connected itself to the spinal cord), cancerous cells were identified in his spinal fluid.  This made us very nervous.  The doctors say surgery "stirs the pot" and can cause false-positive readings for several weeks after surgery.  The next week, Emmett's LP again came back positive for malignant cells in his CSF, and then again the week after.  Our hearts were racing!  The next week, however, the results came back clear!  And the week after, the LP was again clear!  Hopefully this means that the malignant cells seen initially were indeed a result of the surgery and not indicative of a new tumor in his brain!  We count the clear LPs as a miracle!

Another tender mercy we experienced this week was connecting with another family with a boy who also had ATRT in his bracial plexus.  His story is eerily similar to Emmett's.  The tumor started in his left brachial plexus and then migrated to his spine and became involved with two vertebrae.  He underwent treatment, the tumor responded well, and he's now been in remission for a year and a half!  What amazing, hopeful, inspiring news!  ATRT is so rare, and brachial plexus ATRT is so extremely rare that we never imagined we'd find another family that's experienced this particular cancer, much less with a child that's a long-term survivor.  Connecting with a family who has been down our road with an inspiring outcome is without question a tender mercy from the Lord!

Perhaps our biggest fear over the past month has been receiving the results of the genetic testing.  If Emmett's cancer is genetic the medical implications are huge: chances of relapse increase; susceptibility to future cancers increase; chances of long-term survival decrease.  The emotional implications are also devastating.  Was the mutation inherited from a parent or was it spontaneous?  If inherited, did Emmett's cancer come from "me"?  What are the chances future children will have this same cancer?  Would it be fair/ethical to subject a future child to that chance, however small?  Could we ever allow ourselves to have more children, knowing our family could go through this all over again?  If we are unable to have more children, and if we lose Emmett, how will we ever find happiness in life? (Not in the sense of replacing him, but being able to move on with regular life some day)

Well, we received the results of the genetic testing on Wednesday.  Emmett's cancer is not genetic!!!!!  Halleluiah!  This means that Emmett did not get this cancer from either of us! It was just a spontaneous fluke mutation. It also means that if we get rid of his tumor, he shouldn't be any more susceptible to future cancers than anyone else!  Emmett doesn't have to be the end of our story!  We could have more children if we wanted. What a wonderful anniversary gift from a loving Father in Heaven!  We've cried many tears in the last two months...tears of shock, tears of disbelief, tears of frustration, anger, and despair...this is the first time we've cried tears of joy.  And how sweet and joyous they are!

Thanks be to God for this marvelous gift!  And thanks be to everyone who has prayed, fasted, and exercised faith to open the windows of heaven and secure for our family the Lord's tender mercies and miracles at this most difficult time!