Greg’s Story

Site created on February 21, 2022

So, for us, it all started back in October 2019 when Greg had some swollen lymph nodes that just wouldn't go down.  After much testing and waiting, the day before his birthday we were told it was CLL.  Off to Dana Farber in Weymouth we went, chemo was scheduled for right before Christmas pending the results of  his FISH test.  Well, it came back that he had the "bad kind" that was chemo resistant so off to Dana Farber in Boston we went to start a 1 year trial with immuno and targeted therapy.  All went well until towards the end where he had disease progression, after another biopsy we found he developed Richters transformation (RT) which is DLBCL, an aggressive form of large cell lymphoma.  So on to 6 rounds of chemo and a little radiation with a stem cell transplant as the end goal.  Again, all went well until around Round 4 when we noticed his nodes growing again.  So now, after his latest PET scan a couple weeks ago they found disease progression again, this time in his sinus region which brings us up to today.  He is scheduled for surgery  Friday to biopsy the new area to find out if it's CLL or RT and then probably more chemo to follow (he can't have a sct with any disease in his system).  It's been a long couple years with kidney stone surgery ,leg surgery after an accident and covid thrown in the mix..... as well as fighting with insurance companies, BJ's cancelling his insurance and many calls to his disability company.  We are thankful and blessed to have Greg's family, our friends and our church family always there to support us and all in all  Greg is feeling well and we are rolling along with whatever comes next :).  

Newest Update

Journal entry by Cristina Buss

So after 11 days in the hospital Greg did come home.  We still don't have ALL the answers but we are getting there.  Looks like his wonky blood work is due to membranous nephropathy, which research is showing, is a common(ish) side effect of GVH in stem cell transplant patients.  His kidney (yes, he only has one) is putting all the protein and albumin in his urine and basically little to none in his blood.  So his urineanalysis #'s are bananas and through the roof and his blood work is bottomed out.  Mind you, no one has officially told us that, my neurotic self is in the portal and read his biopsy results.  We go in today to officially be told.  There is no cure for it but they seem to be able to manage it with some chemo infusions.
I don't think they can write all his symptoms off to his kidney malfunction but I suppose we will wait and see what they say.

In the meantime, life rolls on.  We are making some fun summer plans and getting to see some of our favorites again next week (including our church family ) and later this month.  Thank you guys for the prayers and reaching out.  Through this whole crazy journey we really have discovered who are true people are.  Some of you surprised us from out of no where and always check in on us and some of you surprised us from out of no where and disappeared...and that's ok too. Life is crazy and it all gets sorted anyway.  So, we trust in God's plan and we know this world is not our home, and we keep looking forward to our eternal home down the road. 
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