Smashing this first chemo and finding ETMR experts

This week has been spent having blood transfusions, platelet transfusions, antibiotics, learning how to feed and administer medication via NG tubes (Pete and Mel learning!), and changing a lot of clothes and nappies!

Eloise continues to do brilliantly with this first cycle of chemo.  She’s running around the ward (always attached to stickman – or sometimes now a bag with her NG feed in it), dancing, playing in the playroom and continuing to act very much like a toddler.  Her temperature came down very quickly (thank you for praying!) and her seizures have improved significantly (she’s still having a lot, but they are generally very mild absences – the medication is certainly helping).  We are so grateful she’s not been vomiting (everyone asks when she last vomited, and we have to say she hasn’t once – yet!) and are genuinely impressed by how strong and resilient she is.  Her blood counts are at zero, but you wouldn’t know it 😊

Alongside this, we have been doing quite a bit of research into ETMR’s.  With it being so rare (there are only approx. 300 cases in the literature, worldwide) the evidence base is very small.  The numbers are too small for official clinical trials.  That said, we have liaised with a few survivor families (including here in the UK) and have found a couple of experts who have done research into ETMRs and successfully treated some cases (most children don’t survive a year).  We are really grateful to our oncologist and CNS nurse here at the Royal Marsden for allowing us to get in touch with these experts for their advice and for supporting us with providing Eloise’s medical information.  We’ve already had an initial response from one of the experts.  We are also getting a second opinion on surgery from another neurosurgeon who has successfully removed an ETMR here in the UK. 

So far. the key thing everyone agrees is 1) we need to act fast 2) for Eloise to have a chance of beating this, she needs surgery – so we really need surgery to be an option.  3) In due course, she’s likely to also need a type of focal radiotherapy too…

How do we feel?

  • Exceptionally grateful for the internet (to be able to connect with others that know about ETMRs), the experts who are researching this, and a supportive and fast-moving team here at the Royal Marsden.  We know these are still small chances, but we keep doing all we can to see how we can help our smart, fun-loving Eloise. 
  • Really glad that Eloise is doing so well and is having such limited side effects with her first round of chemotherapy.  Thank you to everyone for praying!  This is so important, as it potentially gives us more options (e.g. for surgery) as she continues to be strong.
  • Exhausted.  Our days are really full – from meetings with dieticians, to meeting with Dr’s, to rounds of antibiotics, blood transfusions and regular observations.  It’s a constant stream…  Sleep has really improved as we are now in a double person room, but are the only ones in the room for the past couple of nights – and this has really helped Eloise’s seizures too.
  • Conscious that over the next week some big decisions will be made for Eloise (again!).  She will have another MRI via general anaesthetic on Tuesday and then decisions will be made about next steps e.g. whether to start the second round of chemo or go for surgery now.  We are hoping the information and opinions we gather from the ‘ETMR experts’ will also really help these decisions too.

 For those that pray:

  • Praise God that Eloise continues to do so well and have limited side effects from the chemo and that she continues to have fun!  Thank God for the seizures improving (we’d like them to be completely gone, but there has been a marked improvement, so we are really grateful).  Please pray this continues!
  • Pray for all the decisions that will be made regarding Eloise’s treatment over the next few days.  Pray for divine knowledge and wisdom for all those involved – for the experts to provide clear and helpful advice, for our oncologist and for everyone to be agreed (including ourselves) on the next steps.  Pray that surgery will be possible – for the right surgeon, at the right time (very soon!)

10 thoughts on “Smashing this first chemo and finding ETMR experts

  1. Good afternoon Thankyou for the update on how Eloise is getting. Be assured of my prayers for her and for all the family.

    I have a particular interest in brsin tumours. My husband Glenn sadly died from a brain tumour nearly 6 years ago. During his illness, we were introduced to a charity, Brain Tumour Research and to the work they are doing to help to find new treatments for all types of tumours. There is a lot of information on their website which may be helpful to you

    http://www.braintumourresearch.org

    They have info about the different research centres… specifically about Mr Kevon O’Neill who is leading work into neurosurgery…

    Thought it may be useful for u to have this link.

    God bless you all Wendy (friend of Hannah(Ollie’s wife) Xxx

    Sent from my Galaxy

    Like

  2. Hi Pet & Mel,
    I just would like to share you a info about a great team specialist with you (from abroad), if you want to have another opinion.
    Please, feel free to contact me by email to send the info.
    Blessings,

    Like

  3. Praying like crazy for this inspiring young lady, and of course, the whole family. So many people keep asking how she is doing and due to your fabulous updates, I am able to tell them. God is good and closer than ever in this situation. Praising Him for so may answered prayers already and pleading for healing and that tumour to shrink. Blessings guys.

    Like

  4. You are all still in our prayers, morning, noon and night. So good to hear some positive developments but we know tough decisions are ahead. So glad Eloise is a real trouper and that she gives so many people such joy in adversity.
    Exhaustion is inevitable but God will provide. We pray that all the research you are discovering will make the difference. XXX

    Like

  5. Such a good word on her response to treatment! Will be praying for that to continue and that God orders the steps ahead at just the right time.

    Like

  6. Great to read all this positive news, Team Lawson, and love the photo of marching along with buggy and ng tube taped to her back – ‘got lots to do, mummy’! We pray on..

    Like

  7. Praising the LORD that Eloise remains strong thru chemo & tests. Praising that M&P have been able to speak to experts. Praising even while still in this ‘storm’ & trusting the LORD to work out the surgery to happen ASAP. All prayer points noted for ongoing intercession🧎🏽‍♂️🙏🏽🧎🏽‍♂️

    Like

  8. We have just found our 3 year olds brain tumour is ETMR and it’s on his brain stem. Please could you contact me if you get the chance so I can get any info from you and vice versa? We are on Leeds Uk
    Love to you and your family
    Hayley x
    hayleyvaughancvtc@yahoo.com

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: