Three steps forward

‘Your daughter won’t sit up until 2 or maybe 3 and she won’t be walking until about 6 or 7 years of age and even then it won’t be properly. She will always fall over’.

I cried when the doctor told me this. Everything was new and unfolding and it was very difficult to take in. It was one more enormous thing to add to an expanding list.

The doctor didn’t give a shit as was seen from the lack of subsequent follow up. Less about that, the better all round.

So today she took three steps. She’s been firing on all cylinders these past few weeks. She’s been able to coast around the room holding on to furniture for some time. She’s been able to sit up for months. She’s hasn’t walked out, unaided, into open space before. This is big.

She sees Daya doing things and wants to do them too. There is no question in her head of can I or can’t I. As far as she’s concerned she can do everything ….and I won’t let anyone stop her or get in her way.

It is still difficult and she does need constant support but we are a long way from where we were and we are no where near the predictions. This happy human is a delight. She is one of the most determined and resilient people I have ever met. She’s entertaining, very engaging and happy.

One small step for man, one giant leap for JJ. Three steps. Well done. Everyone is shocked and amazed. You’re enjoying your freedom and independence.

Fun times

As we have always said, with respect to this unprecedented situation, ‘we cannot control the cancer – we can only control the experience that the children have…and that is what matters most’. The kids have been having fun. I’ve been doing normal as best I can.

There’s a worse storm coming

From 24th May 2018

“We have a saying in Italian, ‘it rains where it is already wet’.”

We spent over two hours with our wonderful Doctor. We love him. He’s a good human being as well as a great doctor. I stayed quiet, looked at scans, asked questions, cried, played with Daya, asked more questions, cried some more, sat quietly, asked ‘why’, admitted I was scared, and said this is the most ‘fucked up thing for us all to go through’. ‘Yes’, he said. We signed the papers.

‘Let’s do this’. I gave him a hug when we left. Our nurse was there. She’s wonderful. Hugged her too as we said goodbye.

I don’t even know how to put into words the enormity of how bad the outcome of this meeting feels. To put it into perspective, there is more to be done which in some ways is a good thing as the alternative would be ‘we can do nothing more’.

Right now you are a little more likely to die from this cancer than the treatment. This treatment that’s coming is likely to kill you more ‘easily’ and sooner simply because it’s being done and putting you to risk. I have faith that despite all the pain you won’t give up. I will keep your spirits up and we will dance and have fun when we can.

R/O and I/O of Hickman Line

Yesterday was a debacle. Things weren’t done correctly. A 5 minutes task took 2.5 hours because ‘the doctor is coming down soon’ carried on for 2.5 hours. We moved from first on the list to second. She was nil by mouth from 7:15am having had only 100ml of Milk and some water until 4:45pm. Her bone marrow aspirates were not done as the team had gone home as it was so late. So now she has to go under general anaesthetic again next week. Nil by mouth again. Another trip back to the hospital.

Forgive me for being tired and feeling annoyed. I was up the night before and for several nights.

Meanwhile, my child still has cancer. I waste time in my life fixing things to ensure other things can happen. I am grateful but I’m just annoyed at poor communication as it affected Daya and she cried a lot from hunger. Having done this at least 8 times already I know how it works. I also had to call between hospitals to obtain bloods which should have already been on the system.

I kept her happy. We set off with good intentions. It was hard for her today. She now has a stitch where her line exit site used to be, and she has another one in her neck on the opposite side and a new line in her to her heart. Her line has been moved to the other side of her body. She is finding it uncomfortable.

Some pictures from our day. Because we ended up staying so late, Daddy managed to pop in on the way home for cuddles and to cheer Daya up.

No feelings, just facts

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.

A better life for you

My love,

I worry about you. I worry about the damage that is being done.

I thought I could hide things but not everything

I know you will inevitably be hurt by this time. I just pray you never have to see your baby sister in a coffin.

All of this is not what I wanted for you. I wanted a better life. I value your childhood. I value the memories I want you to have when you are older and look back on what should be the most carefree time.

People say you won’t remember. I believe we are the sum of our experiences. And I already know you have a good memory.

I always wanted you to be wild and carefree; which you still are.

I know you can’t make sense of it as you, like us, have asked ‘why’ too. I know you feel sad, we have talked about it.

I know you’re still a child who is fun and free. I’ve done everything I can to make sure I’ve protected you from this situation as much as possible. It hasn’t been easy.

You’re amazing. You’re funny and kind. You’re fully of life and calm. You’re considered and thoughtful. You can articulate your thoughts. You are bursting with love. I wouldn’t be who I am without you. People say you’ll be a caring empathetic person when you grow up. I think you are already. I’d rather you didn’t have to learn any lessons from a situation like this.

Thank you for the love which grows from within us. Thank you for the jokes about daddy which make me laugh and often cry happy tears. You make me laugh so much my sides hurt. Thank you for making me slow down and be present. Thank you for asking questions that make me think or teach or see life differently. Thank you for the love for your sisters which flows so carefree. Thank you for learning to sign ‘I’m your big sister’. Thank you for making me feel full of love. Thank you for being brave and strong. Feelings are feelings, but you haven’t changed. Thank you for not letting this situation change you. You’re an amazing sister to Booboo and JJ. You’re an amazing daughter. Thank you for giving me something to feel proud of. You will evolve, I’ll do my best to ensure you remain unaffected by this bullshit; That it becomes a storm we sailed through and you only felt the drizzle.

I wanted to take you to theme parks and theatres. Now I can’t book tickets or make plans. I wanted to take you to the beach or fly away somewhere all together. Now I need to be ten minutes from our local hospital. The time will come when it will happen again. And it will keep happening and we will enjoy it all the more. I hope to be able to take things for granted again, even for a short moment, to feel completely free and safe that my kids are here to stay.

I love you. I always have. I always will.