Scared on Sundays

When I was a child, my dad who doesn’t say much, said that one of the best thing about me was that I was ‘fearless’.

That’s always stuck with me.

But these days I am full of fear. I bat it away. Sundays are the days we try and slow down. By slow down I mean not going out to do the food shop or rushing around doing three laundrys in one day. Our lives are relentless right now given the needs of the twins and Anaya, who sometimes gets sidelined, and who has needs just the same as any other 5 year old.

Sundays should also be the day when you don’t read anything online or in the papers. I used to love reading the Sunday papers with a cup of tea – that was BC (Before Children).

I read something today about how neuroblastoma is the leading killer of children with cancer. It has the lowest success rate or the highest relapse rate. I can’t even remember (so don’t quote me) but it was the worst of the worst. The most difficult to treat, the least invested in…

…and every day I think of my friends. But on Sundays, I also think about how my friends who have lost their children deal with Sundays. Do they still cry in the shower, do they smile sometimes, do they look for signs…do they still have a tightness deep in the pit of their stomachs…

Where do the dead go? What are we going to do if it comes back. You don’t discuss this with people because you’ll receive the only response they know ‘one day at a time’, ‘keep focusing on the positive’ and anything else. I don’t blame them. I’m grateful they have the courage to say something. I’m thankful. But there are no words that can make you feel positive when you are watching your child struggle or fighting for their life; you just need to keep mentally strong. I’m lucky I can.

However, I get scared on Sundays in particular. Sundays is when it just hits you more than other days. Sundays is about family time. The end of the week on the cusp of the new. A bit like us right now sailing out to sea sometime soon after all the rapids. Who knows where we will go next…or what will happen.

It’s much easier to get shot when you are still; and so thoughts turn to bullets and they cut deep.

I’m scared. When I read all the stories of other children, when I have seen as much as I have, I’m scared she’ll die. Of all the things in the world that could have happened to us, why this? Why my kids?

I just want you to know that the fear never leaves an oncology parent. I do a good job at staying positive most of the time. If you have to believe in something, believe in something positive. And if the truth is worse, then lie to yourself long enough to get through.

So in conclusion, I should read less and do more on Sundays.

Good News

I have good news. As tough as times are, I have good news and I can’t wait to share it with you so here is a summary. Actually I have a fair bit of news about today.

Today marks the end of our Immunotherapy phase of treatment. Our fifth and final round of immunotherapy is complete. It has been a long, difficult and painful journey since our return from surgery. We have pushed on. She has held on. I hope it has worked.

Today, Daya slept through it all. We had an early start to the day. She played in the garden and Jasmine and Daya fired water pistols at Nani. We gave her some meds, hooked up her milk and off we went. She fell asleep on the drive down.

On the way down in the car it hit me when I heard a familiar song, ‘if I only could, I’d make a deal with God, I’d get him to switch our places’ (Kate Bush), I realised that I had quoted it on the blog before. We have come so far since that day. I cried. It’s hard to know what to feel sometimes when you can feel anything. You have to control your mind and stay in the right headspace.

We took her baby too. I guess the baby needs hair now. She still has a Hickman Line. Daya’s upset her NG tube came off. I’ve done some good work on this baby over the years. We disconnected the pump, and with that simple, small action, we were done.

These wonderful ladies have looked after us for so long. Daya carried on sleeping so we took some pictures to show her later.

We are done. We are done with immunotherapy. We have radiation left to go. That will be awful in terms of side effects. But for now we have done and conquered Immunotherapy. Thank you and goodbye, you were awful, I hope you’ve done a lot of good.

I love the NHS. It has saved my life so many times, I hope it saves Daya’s too.

So we disconnected and made our way home to surprise Anaya at school. Just another day on this cancer journey but a milestone nonetheless.

Next, for months now Anaya has been carrying on and on and on and on about having her hair cut short. Anaya has very long hair. It is nice. She has decided to cut most of it off and donate it to The Little Princess Trust. She’s often picked up the leaflet when she’s come to visit Daya on the ward. This time she will be doing it in loving memory of a friend’s daughter, Kaiya, and for Kira (Kira the Machine who has neuroblastoma) who loves wigs. Kaiya was diagnosed with a rare cancer. She was Anaya’s age. And her little sister, who is fine, is around the same age as Daya. Kira is a warrior who has been fighting a long battle with neuroblastoma, and raising a lot of awareness along the way.

The Little Princess Trust is a wonderful organisation that make wigs for children with cancer. Link is here. It is very easy if you would like to do it. You have to have clean hair and you need to tie it up with several hair bands. Snip above the top band. The Little Princess Trust has some more details on their website along with good instructions. They like a minimum of 7 inches. We went for 12.

Anaya’s hair before, whilst wearing an appropriate t-shirt.

She was watching Harry Potter. The ‘after’ picture is below. Anaya has her GOSH tshirt on. We will have have her hair tidied up by a hairdresser tomorrow.

And last, but not least, Aunty Renima has gathered a big team of mum friends and they left today to climb Mt Snowdon to help raise funds for Daya.

I think it is safe to say that today was a good day.

On this day

My iphone has a little feature that shows you images ‘on this day’.

June 2018

This time last year we went in to start High Dose. She walked in confidently, not knowing what was to come, in a special t-shirt from Aunty Jenny, a cape from Aunty Claire and a whole lot of courage.

Unbeknownst to me, I took the picture that would become the image for our campaign. On this day we had no idea what was to come in terms of the urgency for surgery. On this day we walked in heavy hearted and hoping that things wouldn’t end badly for us all. High dose has a mortality risk. It’s the strongest chemotherapy and the one that ‘breaks’ your child. ‘Is she broken yet?’ Not yet. ‘Is she broken yet?’ Yes I think so. I’m not sure how much further down she can go.

Nurse: ‘Don’t worry. She’ll come back.’

The administration of the chemotherapy itself lasts only a week. And you also have a stem cell transplant. The damage that the chemotherapy does accounts for everything else that takes place after. Some side effects are life long.

Daya didn’t make a sound for two weeks. She had a fixed fever and would often have rigours (when your body shakes). It was awful. Our nurses on Giraffe ward got us through.

June 2017

A healthy looking child with a different cape. The tumour was growing.

Today, 2019, Daya is here. Today we are home on our immunotherapy pump, meds, feeds etc etc etc. We are home. She held my hand last night. She slowly placed her hand in mine. We have come a very long way since last year. She is here. That in itself is a beautiful thing.

Blessings

When I count my blessings,

I count you twice.

An Irish saying.

You get through things by being grateful and appreciating things. It’s a wonderful feeling that warms you up inside. And when you are busy thinking about things like that you can’t thing about other things at the same time….

I’m grateful for many, many things.

1. My babies. Those that made it and those that didn’t have all taught me something. You are my focus.

2. My mind that has journeyed to provide me with the mental resilience to get through many things.

3. My family and friends, old and new, far and close, who are awesome.

4. Our doctors and nurses.

5. Fireman Sam who brings Daya to life.

6. The ducks and the squirrels who give us something to do and somewhere to go when we can’t go far.

7. Anu. In the silence and the noise, in the calm and the storm.

8. Good people.

9. Hope.

10. My body that hasn’t fully given up on us yet.

11. Anaya, your quiet resilience and love.

12. Jasmine, there’s an exceptional fire inside you. You are formidable. Daya, you’re a warrior who has endured more than most ever will.

You are my beginning and my end. I’ve counted you twice.

What’s your biggest fear?

Is it holding a snake? Maybe a spider? Or being chased by tiger? Or being bitten by a shark?

One of the things I really dislike in this world…mosquito bites. I cannot stand mosquitos. These silent predators without purpose…but I don’t fear them. I dislike them.

Like any parent the thing I fear most is my child dying. And it is such an unlikely event in most people’s lives that it’s just a thing you park over there and don’t think about. Unless of course your child has a life threatening condition… in which case the police aren’t at your door one day telling you they have been run over and killed in a tragic accident. The grief is inevitable in either case. It’s awful in any case.

Nope, with cancer, for example, it becomes a long drawn out existence of not ever knowing what is going to happen. And watching them suffer. Watching them really really suffer…The fear is real…

It’s like Game of Thrones but less predictable.

And when you are in it, you start to develop other fears.

You see you start to think about what if she does die…

And you get a lump in your throat and you start to cry. You still yourself and stay silent because if you move all your broken pieces will fall apart.

Last night, Anaya asked to sleep with her sister because she misses her…

You see my next biggest fear is to have Anaya’s face imprinted in my memory forever. The face I will see …her face taking it all in, standing over her sister’s coffin in our living room. I’d have to see her hurt…

But that’s not my biggest fear….my biggest fear is having to still live without any one of them.

And I write all this with tears streaming down my face. I write to any parent out there who is going through what we are…I want you to know you are not alone. And to all those who follow this journey, this is my reality.

I watch my friends now, those who have lost children, and I hear them speak, I hear the silence and I feel the pain.

When you are going through what we are, you are tortured …but this is temporary (even if it lasts years as it has for us) and if you lose your kid….you re tortured for life….

And even today, this far down the line, I still ask myself, ‘how did this happen to us?’.

She’s still here. She’s still here. She’s still here…

The Last Sleepover

It has been tough being back in. This is our final round of immunotherapy.

Daya wants to go home. I want to go home. It is a familiar environment but she wants to be far away from here. So do I. You try not to think too much.

The people are wonderful. We always miss the people.

We have started our last and final round of immunotherapy.

We took ‘Little Daddy’ along with us as real daddy wont be with her this time.

I guess you can see here that she is taller and still doesn’t weigh much. Daya got stuck into doing her blood pressure and observations. There was a lot of waiting around this time. Daya was good at hiding…

We are here to start our fifth round of immunotherapy. Daya had some pain initially but it was fixed with morphine. We will be going home on a special pump which means we don’t have to stay in hospital all the time. She has to be watched very closely at home and she gets to be at home which is a big bonus.

Today was emotional. I realised, whilst waiting around, that this could be our last ever overnight stay.

If we get lucky… this really truly could be our last ever overnight stay in our fight against cancer. This excludes any emergencies to the local hospital due to an infection. But…it crept up on us and viola. Here we are.

I checked my thinking with our nurses. They smiled and nodded. I cried. I got a hug. I love our nurses.

I so desperately want to be able to win this war.

Daya was wonderful. Saying bye to everyone. Thank you. Love you. Love you. Bye. I going home now see you soon. Love you bye.

Our departure, this time around, was emotional for all of us.

I cried on the way home. We have been on such a long, drawn out, unprecedented journey. We have consistently dealt with so much trauma for such a long period of time, all I want is to believe that this could soon be over and with a positive outcome. I need to know it.

We are nearly there. I hope.