Isaac’s Story

Site created on January 9, 2020


** Note: Tributes on this page go to the website and NOT to the Griffis family.  Please do not donate here to support the family.  Lindsy has venmo if you wish to contribute.**

This is a group who is committed to storming heaven on behalf of our boy, Isaac. We are declaring health and healing in his body and asking God to rid his body of leukemia. By joining this group, you agree to commit to this with us.
In November 2019, I noticed that Isaac had a swollen lymph node in his neck. It was obviously protruding, however, he was just coming off a nasty chest cold, and he has had reactive lymph nodes for years, so I made note to watch and wait. The lymph node hung around, but I wasn't too alarmed until December 18. We were having dinner and I noticed that the side of his neck was noticeably more swollen. Feeling it with my fingers, it had tripled at least in size. I had a video of him from the day before and could see that this happened quickly. I called the doctor that evening and scheduled an appointment for the next day. Thus began the rollercoaster.
The doctor scheduled us an ultrasound that came back abnormal. We had a biopsy that also came back abnormal, and the following day we were scheduled an appointment with oncology. On January 8, went up to the 10th floor of Helen DeVos Children's Hospital where we were told that he had lymphoblastic lymphoma. Cancer. This meant years of chemo beginning immediately. The following Tuesday he was scheduled for surgery to have his port (chemo injection site on his chest) placed, a bone marrow biopsy, spinal tap, lumbar puncture, and full removal of some of his lymph nodes. This brought us new information that he had over 50% cancer cells in his bone marrow, so his diagnosis was changed to B-cell Acute Lymphoblastic Leukemia.
The journey is years long. Many different types of chemo, steroids, infusions, hospital stays are all expected.
God may not have answered our "please let this not be cancer" prayer, but he has gone before us in so many ways. Oncologists and physicians and nurses are all blown away at how good Isaac has done so far. His labs have remained strong and stable. There is no cancer in his spinal fluid and after cytogenetics we were told that the form of leukemia he has is most responsive to chemotherapy and has the best prognosis. Praise god! We anticipate his remission and full healing! Our oncologist said that most kids come in with 95-98% leukemia in their bone marrow and Isaac has only about 50% and zero symptoms (aside from the lymph nodes). I truly believe that God had his lymph nodes sound the alarm that something was wrong far before things actually got really bad. This is huge.
Isaac has been the poster child for the hospital - getting injections and IV's without a flinch. Taking pills easily and without complaint. This is just his nature. He's the sweetest and most easygoing and kindhearted kid. It seems cruel for this to happen to him, but he hasn't complained once. I choose to believe that God is going to use this as a testimony of his goodness during a really hard and sad season.

Newest Update

Journal entry by Lindsy Griffis

The past few weeks flew by as we toured Michigan's upper peninsula.  We have never taken two consecutive weeks to vacation before, and the break from the norm was much needed.  However, by the end we were all ready to be home, which means we were gone the perfect amount of time.  We fit so many things into our trip; boat tours around Pictured Rocks, waterfall hikes, historical towns, rock collecting, and sitting on the shores of Lake Superior.  We biked and hiked and played corn hole and slept under a canvas roof and and sat around the fire with dear friends each night.  

Somewhere during our trip, Jude got a nasty bug bite on his head.  By the time he showed me, the bite wound had mostly scabbed over, but Jude had two visible and palpable lymph nodes swollen in his neck.  If you remember, Isaac's one and only diagnosis of his leukemia was swollen lymph nodes.  Having felt both normal and cancerous lymph nodes, I knew that Jude's felt normal, that there was a reason that they would have swollen, and that it was likely a healthy response of his immune system.  However, each time he turned his head to the side and I saw the slight round bulge in his neck, panic would rise in my chest.  My nervous system felt out of my control as I lost sleep, mentally going all the way down the road of "what if's".  PTSD doesn't care to warn you when it is going to flare up.  I wonder if I'll ever go back to a more carefree motherhood, one without health panic.  On the other hand, this experience has forced me to essentially face my demons - lymph nodes now one of my biggest triggers - and still come out breathing on the other side. Exposure therapy, is it?  Facing your fears over and over until you realize that you might actually end up okay.  At least for now.  

This past Tuesday was Isaac's monthly hospital appointment and it went flawlessly.  They drew labs, gave him a check up, flushed his port, and we were on our way.  I asked the Nurse Practitioner who we often see about Jude's flared lymph nodes, and her lack of concern (unless they were hard and huge and immovable and formed a chain... all symptoms Isaac had) allowed me to breathe more deeply once again.  She told me that in her 45 years in oncology, she'd have to be hard pressed to recall a pair of siblings who both got leukemia.  Deep breaths again.  Jude still has an appointment tomorrow with our primary care doctor, just so professional hands can feel his neck and I can cover all of my "what if" bases.  But I have stopped obsessing, for now.  

Onto Isaac.... his labs look amazing, although his ANC is still higher than we like.  This means they may need to increase chemo again, but since he has grown he is not above 100% dosing quite yet.  His bone marrow recovers quickly from chemo, which I believe is overall a good thing, but also needs to be controlled to ensure that it remains suppressed enough to discourage any leukemic cells from forming.  One surprising finding we had was that Isaac's liver numbers are in nearly normal range (AST is normal and ALT is only slightly elevated)!  This is a tremendous drop from the 5x the max numbers we were seeing not long ago.  Milk thistle seems to be helping, but I was very surprised since we were far from perfect at giving this in the morning while we were camping (don't worry - never missed a chemo dose).  The only explanation I can find is the camping life the past two weeks.  Constantly outdoors, in the woods, in the lake, being active.  His body apparently liked that.  All along, I have viewed our time outdoors and in nature as a vital part of Isaac's healing and all of our health. Perhaps just as valuable as the pills he swallows each day.  

Finally, Isaac turns 9 on the 27th!!  You all might remember our covid/cancer drive-by birthday parade last year. It was incredible and we all felt so loved and cared for by our dear friends who showed up.  If you want to send Isaac a birthday card, I'm sure he would feel very loved!

As of today, Isaac has 266 days left of treatment, with 532 behind us.  And along with the rest of you, we don't know what the future holds.  It likely involves therapy, healing, hoping, trusting.  We hope and pray that the hard parts grow us and the connections soften us.  Two-thirds of the way through our chemo journey, but I know that we will continue to live in the "after" of a moment that changed our lives.  I can only hope and pray for fruit from this experience amongst all that tried to shut us down.  
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