There have been many, many hard days during this brain cancer journey – but the last couple of weeks we have had more fun, a few more smiles and much more ‘play’ than we’ve had for a long time. So we are celebrating and grateful for the good days.
Eloise seems to be tolerating this round of chemo well. Her appetite is still very low, and we spend much of the day trying to get her to eat/nibble at something – but she’s doing ok otherwise (and still has her NG feed). She still gets tired and is lethargic, but she’s content and generally enjoying her days. And we are getting better at being aware of, and managing, her sensory issues. So we are very grateful for that. Eloise has such a sweet and kind nature – it’s really lovely to see.
A local charity called Momentum has been wonderful to us and has provided us with some ‘music therapy’ sessions for Eloise. These are at home, so are safe for her to do from an infection point of view, and Anna is able to join as we do them after she gets back from school. Having had so many things ‘taken away’ from us due to this cancer, it is so nice to have something positive. We are so grateful.
Anna is ‘loving school’ in her own words. She really does seem to suddenly be thriving. She’s fanatical about her new swimming lessons – and it feels like life might be resembling a normal-ish childhood upbringing for her.
And so the big news….we have bought a lovely dog! If you’ve been following this blog you will know that Eloise is dog mad (Anna and we all are too really…!). We’ve spent many days in the past few months going to parks so Eloise can say hello to dogs – it’s one of the few things she can do. So we decided to take the plunge and get a dog.
So Kobe has joined our family and has brought the biggest amount of smiles! He’s 11 months – exceptionally gentle and calm, brilliant with our girls, and is quite simply amazing – we bought him from a lovely family who we are very grateful to. And Eloise and Anna adore him already and can’t believe how calm and gentle he is.
It might seem mad to add more complication into our lives, but he really is giving Eloise confidence and fun. Pete heard Eloise laughing yesterday as she was playing with Kobe, and feeding him his dinner – we have hardly heard her laugh since her surgery in March. He really is bringing dog therapy…and we might officially train him in dog therapy in due course.
And for us, there’s a chance now, that Anna will remember 2021 as not only the year of Eloise being unwell and living in Covid times…but the year we got our fantastic Kobe.
How do we feel?
As you will see from the above, we feel really grateful for all the things we are blessed with. Grateful for moments of joy and smiles, and grateful for a wonderful dog who is bringing happiness to the girls.
Enjoying the present. We’ve had no unexpected hospital trips and are enjoying being at home all together. We don’t take any of this for granted any more…
For those that pray:
- Give thanks that Eloise is here with us (the average life expectancy for an ETMR patient is 9-12 months from diagnosis, so Eloise is starting to already exceed that!). She doesn’t appear to be having any seizures and is tolerating this chemo round well.
- Give thanks that Eloise is content and for the gift of having Kobe! We continue to pray for Eloise to live up to her name and ‘fight for life in all its fullness’. Pray Kobe continues to help bring out her confidence, smile and laughter.
- Pray for Eloise’s appetite to increase so she has more energy and doesn’t rely on the NG feeds so much.
- Pray for Eloise’s next round of chemo – that she tolerates it well and that it kills any cancer cells.
- Pray Eloise remains NED. Unfortunately it feels very binary – she needs to stay NED as there are very few treatment options if the cancer returns and the chances are high for the next 18 months-2years. Please don’t give up praying.
- Pray for other children affected by cancer, including many of our friends. September is childhood cancer awareness month. Cancer continues to be the leading cause of death for children after accidents – and of these brain cancer is the biggest killer. The diagnosis is devastating, the treatment is brutal, and the majorty have long term side-effects for the rest of their life.