No Evidence of Disease on MRI scan! (…but not all clear)

The scan showed no evidence of any tumour regrowth! Hallelujah and … phew!

It’s been a pretty hectic and stressful past couple of weeks and these were the lines we wanted to hear. We are extremely grateful to the NHS for their combined and prompt response to Eloise’s seizures restarting, resulting in rapid appointments with:

  • An epilepsy consultant
  • An MRI scan
  • A Neurosurgeon
  • A review of the results by a Neuro-radiologist
  • An EEG test
  • Eloise’s scans being discussed at the Paediatric-Neuro-Oncologist MDT meeting
  • A short call with an Oncologist (full appointment happening this coming week)

In summary, Eloise’s scan shows no evidence of the cancer returning but does show other changes. These include a small build-up of fluid (which in the words of the excellent neurosurgeon “isn’t very exciting”) and some increased marks/lesions of calcification in another area of Eloise’s brain. There isn’t a clear consensus on why Eloise’s seizures suddenly returned or what the increased calcification in Eloise’s brain means. It is potentially a result of Proton beam therapy but given it is such a new treatment and not normally given to children so young, there is no data to back this up.

For now, we will slow down Eloise’s drug-weaning schedule, to give the brain more time to get used to the changes, continue to watch how she does and monitor changes/lesions in future scans.  We need her to come off the sodium valproate so the next few months will be a long process (and hoping that somehow she can, without seizures starting).  We will also see what the EEG results show.

How do we feel?

So relieved that the cancer hasn’t returned.  So, so grateful! Ultimately this is the big win.

Grateful for the love and dedication for Eloise by all the staff involved (a surgery slot with the neurosurgeon had been penciled in for Eloise just in case she needed it – which she didn’t – showing both the dedication and also the recognition of the potential seriousness).

Thankful that Eloise doesn’t appear to have had a seizure for the past week.

Conscious that we might be in this (and other) ambiguous situations for many years to come – medical professionals won’t know for definite what is causing changes/any new symptoms, and can’t necessarily treat the issues. Brain tumours and being on the cutting edge of new treatments (that have done their job in killing the cancer!) cause other issues.

For those that pray

  • Give thanks that there is No Evidence of Disease!
  • Give thanks for all the love, care and prayers we have received from the NHS, family, friends, and colleagues
  • Give thanks that Eloise is getting stronger and enjoying life, and that her seizures appear to have stopped over the last few days.  Pray they continue to stay away.
  • Pray her brain heals and that it is protected from side effects from all the changes and treatment
  • Pray for wisdom, patience and peace as we work out the best path to reduced drugs, improved health and liaising with various health professionals

15 thoughts on “No Evidence of Disease on MRI scan! (…but not all clear)

  1. Elouise and all of you are breaking new ground in the ‘treatmentscape’ for these tumours in young children. It is hard to dig in and tolerate the long process. Respect for your commitment and fortitude. Chantal


  2. Thank you Lord that the tumour isn’t back and for all the wonderful care and co- ordination of the consultants and team .
    Praying as you ask and for all your family . God bless you all .Penny xx


  3. Such good news and relief! Will pray for seizures to continue to decline and answers for her healing, for strength and wisdom for each of you. ❤️🙏🏻


  4. Thank you for posting, and continuing to pray.
    By the way, I was praying for you earlier this week and felt like God was really commending you for your great wisdom in how you parent both your girls through this long horrible journey


  5. Fabulous news that Eloise remains cancer free! God be praised! Praying that the seizures do not return and that she continues to grow stronger xx


  6. That is an amazing news. Let’s keep praying and trusting God and knowing God’s got this and have faith. God bless you all xx


  7. So much to be thankful for. Praise the Lord for He is good! 🙌.
    Praying for the way forward, for wisdom and for peace x


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