Grade 4 Cancer
Good afternoon/evening to you all.
The biopsy report came back on Saturday and today we had a very loonnnggg day at Great Ormond street. We started at 10am this morning and we left at 4:45 pm. They discussed with us exactly what Chiane has and the treatment plan.
We were bombarded and swamped with information. We realised this was not going to be straight forward as the day went by. Chiane will spend a lot of time in hospital… She will be going back to school at some point but it will not be before the school closes for the year… Probably when the new school year start in August… But it will be on and off…
There will be a lot of people involved during her treatment…. From our local hospital, to nurses coming to our home, to social workers and child therapist to staying in Great Ormond street. We as parents have a massive responsibility because a lot of her treatment will break down her immune system and the only way we will know something is wrong is when she has a fever. We need check her temperature every hour at some stages as a fever will be life threading. Special diets and foods. The list is endless.
Chiane has been diagnosed with cancer. Previously they called it a tumour as they didn’t know what it was. There are 4 different grades of cancer:
1. Not that aggressive
3. Very aggressive
4. Severely aggressive (life threatening over a short time)
Chiane has grade 4.. severely aggressive. We have been told if she doesn’t receive therapy, in 5 months time, what they already removed in theatre from her brain will be back…and a year from now she will not be here anymore…
So we have no choice but to do this. There is only one way and that is forward.
What Chiane has is called:
Supratentorial Primitive neoroechodermal tumour.
Technically this is what will happen in very short:
First she will receive the following 6 chemotherapy over a period of time.
The above will sometimes be given on it’s own or a combination of at least 2 types. (over 6 months)
Then she will receive radiotherapy.
Then it will be more chemotherapy…
Thiotepa…(this is a very very aggressive chemotherapy and it will be for a period of 4 weeks)
The whole initial process above: 9 months to 1 year…
Chiane will go in on Friday to receive her Hickman line and lumber punch under a general anaesthetic. The lumber punch is to establish if any cancer cells have moved into her spine. MRI can’t pick up cancer cells in your blood, brain or spine… Thus, the lumber punch tests on Friday. She will undergo lots of tests re her liver and kidneys, her hearing, her bladder and stomach and it will constantly be monitored and tested for failures due to the therapy.
Therapy starts on Monday….
Soooooo!!!! One day at a time! Step by step…. That’s how we will take it! We thank you all for your support and we will help her through this.
Chiane doing well and she is beating me with her portions at the moment! She eats more than me and we help her build up her fat for the hard times to come… As she will need it! Lol
Thank you for your prayers and words of wisdom/support!