I write this to you today whilst watching a lightening storm outside my window.
I can put off no longer what is required.
I won’t discuss my feelings on the matter as they are changing and stoic, terrified and hopeful.
I’m urgently planning the future for a fractured family.
The truth is this, Daya’s chances of survival are much lower than the doctors first anticipated.
We had a meeting last week with our consultant which lasted well over two hours.
Allow me to simply stick to the facts.
Daya has had 8 rounds of chemo. The chemo has done some of its job but not well enough. She still has a large active cancerous tumour being well supplied by a good network of blood.
Her tumour is inoperable. It is too dangerous to operate. He explained why. It made sense. We are urgently seeking a second opinion, amongst the rest of the worlds leading neuroblastoma surgeons of which there are only a handful.
They are going to reclassify her chemotherapy into the highest risk category. This means her chances of survival are much reduced and the damage they are about to do to her body is much worse and may kill her, especially after the chemotherapy she has had already.
All the while she was sitting in my lap, on the floor, playing with things. I cried. I bit down hard on my lip to stop myself crying. I buried my face in her muslin so that she would not see.
The options are this. Do nothing. Wait for the cancer to spread again and then do high risk chemo. But it could come back somewhere worse such as the brain or lungs. By this stage it will be a more aggressive and a well developed intelligent cancer. OR we could go in and try and kill everything.
She will receive High Dose chemo which is exceptional agony and has serious long term side effects.
‘Your daughter won’t look like your daughter anymore’.
‘She may die or end up in intensive care within the first week. One of the drugs we give her could lead to seizures.’
She’s going to be in a room for at least 6 weeks straight. She will have horrendous mouth sores, lose weight, have nutrition directly into her blood supply, completely shed her intestinal and oesophageal lining, have skin sores, painfully dry skin, seizures, liver damage etc etc etc. The list goes on and these are just the basic side effects to be expected. I’ve missed many others out. She will also have a stem cell transplant along with platelet and blood transfusions. She will be in a cot (cage) for weeks on end. I highly suspect she will become depressed or aggressive as is common for children in solitary confinement. Today I bought many little party bag type toys to play with. I also bought some for the other kids that will be on the ward at some point. It is a sad and lonely place to be.
After high dose she will have radiation. Radiation is under general anaesthetic every day. Yes every day. So nil by mouth every day too. This will go on for at least 14 days.
After this she should have immunotherapy. However two weeks ago the NICE decided it is too expensive to give this treatment to babies and children with neuroblastoma. We are stunned and shocked. It looks highly likely that we will have to raise the funds to do this ourselves. This will be an additional stress. It is very expensive.
“I will have to condemn you to a further 8 months of treatment’.
We aren’t just trying to kill the tumour we are trying to kill all the sleeper cells that may exist anywhere in the body.
We will be trapped in this room for a very long time. We have been told that the chemotherapy could kill her due to the risk of infection once all the bone marrow is destroyed. We won’t be able to have visitors in the room. It will be difficult for me to leave her. She needs constant care and cannot be left alone.
Once she has been through all this there is a very real chance that the neuroblastoma could relapse and there would be no further treatment available to her.
She will definitely die if we don’t do this. It is just a matter of time.
She could highly likely die if we do this treatment.
It is highly likely that once this is over her cancer could come back and she will die.
We are in a horrible place.
We can’t stop now. We will keep going. Whatever it takes, to get her better, we will keep going.
They held hands around the park. They belong together, we all do. And they held hands yesterday. Jasmine always reaches out to hold her hand. I see their love and I also know the odds of survival.
I hope she can hold her hand forever whenever she likes.
We are understandably broken. We are fighting hard to ensure our kids have a happy environment. I have nothing left to say.