The last few days have been a bit up and down. After a several hour GFR Kidney test in the Marsden on Thursday, we were first told there would be a slight delay (a couple of weeks) in Eloise having her MRI and starting her new phase of chemotherapy – making us feel a little subdued and slightly anxious to start her next phase of treatment. But today we were told a change of plan, and Eloise will have her MRI this Wednesday.
We spent today down at the coast (Mel’s mum’s house is near West Wittering) for an impromptu trip – as we thought we weren’t going to have any appointments until Thursday and Anna is now off on her school summer holidays. But a call this afternoon changed the plan and we will have Covid tests tomorrow at 9am at St George’s in Tooting, before Eloise has her MRI by GA on Wednesday morning (~10.30). The rest of the week is also full of appointments – community nurses and bloods followed by an audiology appointment at St Heliers on Thursday, then a meeting with our oncologist at the Royal Marsden on Friday to discuss the scan and the future treatment.
How do we feel?
- We are grateful for a fun-filled sunny day today – for managing to find a way to keep both Eloise’s hickman line and NG line safe from sand (using clingfilm, wearing two swimming costumes simultaneously and leggings) and for special times together as a family. Our life is semi-chaotic, so we have to grab the opportunities when the arise as plans continually change.
- Always on guard – Eloise has had a couple of very slightly odd turns. It’s so hard to tell if these are sensory issues, very minor partial/absence type seizures (they are different to her previous seizures prior to surgery), exhaustion and/or recovery from all her intense treatment. She’s so little and can’t explain much and it’s hard being her parents as we are her only advocate to identify if something is wrong. And it’s also very anxiety inducing knowing that sometimes the ‘very small thing can be the big thing’ (her initial symptoms were very, very mild and took months to diagnose).
- Anxious about the scan (scanxiety?!). This is another Big Week in Eloise’s journey. We know this scan is absolutely critical. So many ETMR patients relapse whilst on the treatment Eloise has had and we are just praying the high-dose chemo and protons have obliterated any of the remaining cells and that there is no evidence of relapse, spread or cancer. It’s been the longest time so far between scans, so we are just desperately hoping and praying for it to be clear. We try to stay positive, but on some days it really is hard. We are so desperately sad for other ETMR children who have relapsed and/or where treatment is no longer an option. We can’t get over how awful this cancer is…
For those that pray:
- Pray for Eloise’s scan on Wednesday. Please pray for it to be absolutely clear. Pray for our nerves/peace for us. Pray for Eloise being nil by mouth until late morning. Pray for her shunt to be easily reset afterwards (this was quite a saga once in Manchester and involved numerous attempts, staff, several X-rays etc).
- Pray that Eloise can start her new maintenance chemotherapy protocol really quickly – that there would be very limited side effects from both the intrathecal chemotherapy and oral agents.