More MRI Uncertainty + Prayers
Foreword by Brian Gourley
Operating on all cylinders, once again. Getting the teams coordinated at CHOP and Dell Childrens to make sure no balls are dropped, nothing is missed. I look at my children in awe at their fighting spirit. I just want us to get through this year, get to the 1-year biopsy, but this MRI has really thrown us a curveball (to put it lightly). It took 3 weeks too long to get results, eventually we had the imaging that was taken here, sent to CHOP to “double check” because the neurologist we were working with took 3 weeks to get us the results, and then they have potentially missed some key stuff. It should have taken 24-48 hours. The MRI was Nov 29th, and we didn’t get meaningful insight until December 17th.
Doctors, if you are reading this, Excellence Matters. Listening to parents needs matters. Telling them “you got it” when it then takes 3 weeks to get results that should have taken 2 days is unacceptable, especially when we have uncertainty like we do right now. “I don’t know “ is not an answer, “I don’t know but I will research and find out” is an answer. “I’ve never heard of that drug” is not an answer, “that is a new drug that I am unfamiliar with, but I will research it and make sure I am up to date” is an answer. I have no patience or tolerance for alligator arms when it comes to my children, nor should anyone reading this blog post. I have no tolerance for lack of detail. I have no tolerance for “this is not my department.” Finally I have no tolerance for having to hunt down a FedEx number to find my child’s imaging which had been sent, not overnighted like we requested, and not sent with urgency, nor do I for having to follow up to make sure it was uploaded and shared with the transplant team.
I am a man of God, and I am unable to accept ambivalence from people that work in this profession. If you are ambivalent about kids who have battled cancer maybe there is another profession you should consider.
Erin Gourley , Dec 19th 2021
We received some unexpected news yesterday. This email below was sent to us followed by calls with the CHOP and Dells teams regarding Lucas’s MRI from November 29th. Lucas will be going under on Thursday, December 23 at 9:30am for a repeat MRI and a Lumbar Puncture.
Hi all,
I reviewed the scans at length with neuroradiology. I’m going to summarize the findings here and will also call Brian and Erin to discuss, since the second read is complicated.
They agree that the white matter changes have progressed and are most consistent with methotrexate/treatment toxicity. I agree with Dr. Cohn that MTX toxicity absolutely can progress on scans, and the neuroradiologist also agreed with this. Without any clinical changes, I would not change his gilteritinib based on this scan result and what we know about gilt.
The ventricles are back to the pre-pseudotumor size (good news) and they don’t see any papilledema (also good)
They did observe a finding that was not described by the Dell radiologists; however, the caveat is that the technique is different than the protocols that CHOP uses, so they can’t say whether this is a real finding or an artifact. The finding is that there is leptomeningeal enhancement of the sulci in the R temporoparietal region. If this is real, this could be consistent with infection, bleeding, or leukemia.
Since they cannot say with certainty based on these images whether this is an artifact or something to be concerned about, I would recommend repeating the MRI and following it with a lumbar puncture. If the images are the same or better and the LP is negative, then that would be reassuring that this was just artifact.
As you can imagine, we were jolted yesterday and are trying so hard to stay in the light. Lucas has been playing this song for the past few weeks-‘clap your hands if you believe’ and he claps and claps. We believe and are praying with all of our might that his MRI images are better Thursday and this is an artifact that has resolved and nothing more. I’ve definitely said more novenas than I’ve ever said and have been down on my knees praying to God that Thursday we get good news and there is no leukemia anywhere in his body and no infection, bleeding or leukemia in his brain. Please Lord let this be nothing more than an unconcerning artifact that has resolved.
We so graciously would love for you to help join forces and pray so hard for Lucas.
* May Lucas’s lumbar puncture be negative. May there be no leukemia anywhere in his body.
* May Lucas’s brain MRI show no infection, blood or leukemia.
* Please may this enhancement in the right region of his brain be nothing and the images show improvement.
* Gentleness and peace for Lucas’s procedure on Thursday. Please in the name of Jesus may this child be healed and cured of all cancer, leukemia and disease. May it never come back to him so he can live a healthy full life.
