The Funeral

Daddy buried his Daddy today.

You went to school. I had to stay in the hospital with Daya. Jasmine stayed with Esther and Nani was in hospital with Nanu. It was a tough day for Daddy. When he came home, you were laughing and joking. You heal us. Childhood is so fleeting. I hope you never have the worries we have. I hope you live a good and full life.

Grandad (Dadu) had some fun times with you.

“He taught me what damp means mummy. It’s when something isn’t completely dry or completely wet. It is….inbetween. He taught me other stuff too”. Anaya, 2017

Anaya you will be the only one that remembers him. Daya and Jasmine will be too young. He found all three of you fun and special. Life, like time, is fleeting.

He didn’t live long enough for you to get to know him better. Life is short.

“One At Rest” by Helen Steiner Rice, 1900 – 1981.

Think of me as one at rest,

for me you should not weep__

I have no pain no troubled thoughts

for I am just asleep.

The living thinking me that was,

is now forever still,

And life goes on without me now,

as time forever will.

If your heart is heavy now

because I’ve gone away

Dwell not long upon it friend

For none of us can stay.

Those of you who liked me,

I sincerely thank you all,

And those of you who loved me,

I thank you most of all.

And in my fleeting lifespan,

as time went rushing by

I found some time to hesitate,

to laugh, to love, to cry

Matters it now if time began

If time will ever cease?

I was here, I used it all,

and now I am at peace.

You fall through the chasm

There is no worse pain than losing a child.

There is no worse pain, than losing a child.

There is. no worse pain. than losing a child.

I’ve said it three times and I just can’t convey how awful it is.

I’m so far removed from the mundane reality of choosing kitchen cabinets and play dates, coffee mornings and eating out.

My reality is that every two months or so, a child we know passes away. Today we found out that same sad news. It doesn’t get easier. It hurts every time.

When it hits close to home, to someone you know and care about a lot, it hurts deeply.

A beautiful girl, the same age as Anaya, who came and changed so much, is no longer with us. A mother and father’s first born has been robbed of the chance of life; and a mother and father robbed of sports days, birthdays, school plays and Christmas. Graduation, a wedding and grandchildren. And a sister no longer has a sister to play with and cuddle on the sofa.

There is no worse pain than losing a child.

You beg the universe to not let it be you. All the way through and then suddenly it is. I’m angry.

How do you move on from that?

With great difficulty. You will always miss your child. You’ll miss your child everyday and even when you grow old and grey you will long for the life of that child you lost so long ago. You’ll always wonder how it might have panned out for that little child. Life is short and fragile. But it is also long when you have to endure the unthinkable.

There is no worse pain than losing a child.

It is a gut wrenching awful pain that hits you right inside. Your stomach tightens, you get a big lump in your throat and the tears flow. And they don’t stop because sometimes it’s harder than it should be. How do you go to sleep at night or wake up in the morning without her being your first and last thought…

A part of you dies when you lose a child. How do you stand on that beach with one less child?

I can think of no worse pain. She’s gone. Life is cruel. Our parallels are plenty. However, my child is still here breathing in and out. In and out.

Tonight, we are completely devastated. We share in the loss of this beautiful daughter and sister.

Giving way to empathy

For those that aren’t going through something serious or draining themselves, it is empathy that acts as a support for someone who is going through much more than you are at that time. It is one of the stilts that keeps the house up.

You don’t always need to experience something yourself to be willing to empathise but you do need to be selfless for a moment or more. Just the act of truly committing yourself to feel and attempt to understand, for more than a few moments, is an act of solidarity.

Most individuals don’t get beyond the first three seconds. Most don’t sit with a thought long enough to feel something. Some just won’t be able to process a thought. That’s ok too. At least you tried.

You don’t suddenly live in a bubble of pity, sympathy or support when your child has cancer. ‘All the assholes in the world still exist’. I’ve met some parents who wanted me to write that part; because for them they have family, friends or idiots along the way who have made things feel worse for a variety of reasons. I’ve said to them, the world carries on regardless, this, as awful as it is, is more than a distraction for us. It is simply what we have to be consumed by all this now and I hate it too. Some people have more regard and some less. It is still love that binds us and those without support suffer a great deal.

I saw a woman crying and smashing the wall with her fists. She wasn’t crazy or depressed. She was alone in her grief and her grief was too much to keep inside. I just went over to her and gave her a hug and held her and let her cry. I never got her name. Her kid was alive and was going through treatment. She just had a moment where it was all too much. Her sister hadn’t come to visit; she was busy with her own kids and planning her wedding. It was all getting too much for her being inside all the time and hearing her child screaming and vomiting. Her husband couldn’t handle living at the hospital. She wanted me to share all this because she wanted you to know how ‘s@£t’ it can be and that it hurts when the people you thought would show up don’t. By showing up she didn’t just mean physically present.

Not every one has empathy. It hurts most when you dont get it from where you expect it.

I try and manage my expectations. I also try to be mentally resilient. Ive gone from being devastated to scared to angry to scared to anxious to upset to happy to crying to stoic to calm. It’s a journey.

I’m calm these days. I like staying calm. I’m also too tired to care. I’ve become more desensitised. I like being in the moment with Daya when at the hospital. I like talking to the nurses. I like learning new things. I like laughing with good people. I’d much rather be with all of my kids; healthy, happy and at home. But this is the card we have been dealt. I dont have the energy to shower sometimes so I spend my energy wisely. I spend it on my kids. I always have something to sort out for any one of the kids. Almost everything in life will only matter as much as you allow it to. And some things might happen that will or might destroy you. We cant be in any of this alone. We must be together.

‘You dont laugh or cry for more than a few moments’ Nani, 2019

Ive always thought that driving is a lot like life. Everyone is going forwards somewhere to do something (hopefully) worthwhile. Their driving style says a lot about how they function in the real world, how well they will cope and fundamentally about their personality type.

Have you ever given way to someone whilst driving? Have you seen how happy the other person is. Everyone wants to be given a chance in life. Most people are trying to get ahead in some way. The world doesn’t expect kindness, and look how happy people get when they are given way to join the line of traffic.

I once gave way to around a dozen people on the way home as I was trying to maximise Anaya’s nap time on the way home. I didn’t want to arrive too early. I observed that everyone was happier and grateful when I gave them way. It was becoming addictive for me. I was getting a kick out of watching people react. It did also make me smile too.

We need to slow down, think, feel and give way more.

Me: all those people out there with their healthy kids…. fussing and moaning and making plans…they don’t know how good they have it.

Him: nodding quietly. ‘True’

Me: and I think the only people that could say that to us right now are the parents that have lost their children.

There is always someone better and worse off than you in some way or another. It doesn’t matter. What matter is that we are kind and patient with each other.

Awaiting the Mid Life Crisis

We switched. Daddy spent the weekend at the hospital working and playing. I spent it at home with the other two. Exhausting for both of us.

When I came to switch back:

Nurse leaving the room: ‘oh Hi Mummy….you know something…you two…you’re a great team. I’ll be back later’.

Me: …you know I was thinking….

Him: did it hurt?

Me: no I’m serious….I was thinking we pretty much behave like divorced people who co-parent. We could be divorced and no one would know it…bahaha …we would be very good at coparenting. Professionals.

Him: why are you laughing (cold stare) what!?!?

Me: We would be excellent at being ‘divorced parents’. We don’t talk about anything other than the kids. We do a handover and we don’t talk about anything else. 5-10 minutes and we are done. One of us stays with the kid and the other goes.We have no time and we dont actually do anything else together to have something to talk about. Just the basics. And we switch. And that’s it… that’s all and everything. Actually, I don’t think I’d like you very much if we got divorced….hmmm….

Him: that’s because this is consuming our entire lives and we have no time…..(silence)…..Ooooookay so what are you going on about?

Me: When is mid-life….so about now, are we mid-life yet….shouldn’t you be having your middle life crisis I feel like we should…?

Him: I’m going to have the best mid-life crisis. I can’t wait.

Me: what are you going to do? Get a motorbike? Or…….someone half my age, half my weight hahahah….a cabin in the garden for a gym might be better…

Him:….no…she wouldn’t have to be half your age or half your weight….

Me: wait. WHAT! Sorry… what…….(silence and finger waving in the air) what do you mean to say that there is a name for her…this heathen wench of whom you speak so precisely…already?

Him: No no nooooo

Me: Shut up then. Who talks like that – I bet she’s a nerd- you leave a wife …….for half her age or half her weight or both. I think I might actually be more offended if she did weigh the same ….or be close in age….

Him: I was just saying it’s not like she would have to be half your weight because you don’t weigh that much anyway….

Me: shut up liar. ok. Same size but half the age. Who is this then? You’re talking like there is a specific person….

Him: no. No. Noooooo.

Me: Shut up idiot. Acting like you’re getting divorced to someone half my age but not my weight. Who does that. Anyway shouldn’t you get a motorbike or something? I could get one too. Or be in the side car…..however given what you’ve just said I wouldn’t trust being in your side car…you’d probably loosen the screws and I’d go off down the hill….by ….my….self….and you’d ride off into the sunset, with my life insurance, trying to balance your new ‘same-weight’ wife around the sharp bends on your bike. Good luck with that.

Him: (smiling broadly) see we do have things to talk about.

Me: hahahahaha yeh. ok see you later bye.

Him: where you going?

Me: ahahahah…..to find someone really rich and twice your age to pay for my mid life liposuction, botox and fillers makeover….so I can find someone younger than whoever you find. I have to go, Jasmine needs a bath and Anaya has homework so she needs to tell me how boring I am. That’s your ten minutes up. See you later.

Him: this is why you’re funny.

Me: you know ….we need to have a really good midlife crisis together after all this.

Him: (nodding) yep.

Me: yep. (nodding)

(And that is how we cope…with banter…).

Week 7 – sleep

Ive had two hours sleep a night. For the last few nights. She slept from 12-2am. We were awake all night. She slept around 11am for a few hours. I stayed awake to speak with the doctors and slept just after 1pm until 2:30pm. Sleep is important. So far the average has been two hours. She’s been unwell and in pain.

She’s been vomiting. Her temperature was high. 40. That’s too high.

More antibiotics were added. Our nurse Angie is great. It’s been just me, Daya, the IPad and Angie.

She had an impromptu, unglamorous bath. She was tired. It was brief but fun. Caroline was awesome. She cleaned up the bed like a solider. We love her. I held Daya because ‘mummy Daya need help hold me’. So here we are doing what we do. Cuddles in a cot. Daya has been restless all night. Her hair has come back and she’s put on some weight which is good news and then she lost it again.

I miss the other two.

This morning:

“Mummy. Draw Daya feet. Oh wow. Amazing”.

She was better for a while. We went for a ride in the lift. I try and get her to exercise a little each day. She was tired. Aunty Lucinda, our cultural oracle, gifted Daya this t-shirt. I love it. It gives me faith and hope every time I stop to read it. I believe in you Daya. I believe in you.

“Hey lemme in please. Daya go back bed”.

Daddy was on TV!!

Our night nurse Diana came back from holiday which was good news. She’s great. Always professional, old-school professional and a total softie, and Alina who is always, and I mean always, bright and smiling. They would make great robbers. They are quiet at night. And we slept for about 4 hours straight that night. It was a good night. Daya was vomiting a lot in the morning and went downhill again. Karen is wonderful. She changes the atmosphere on the ward. She sings to Daya and sometimes she tries to make her laugh. She helps with all the ‘little (big) things’ that make life easier. She will make Daya’s bed when we are out and tuck her baby in. She’s a calm force of nature. The metaphorical human touch can have a big impact. We appreciate everything. As I’ve said before, a good nurse can change the course of your entire day.

It is difficult being here. We live here. Everyday people come and go but we live here. It’s cold at night. Our food lady has a wonderful smile in the morning. Our cleaning lady speaks softly to Daya and quietly works around her cot when she is sleeping or waits and comes back later. Our friends work so no one visits during the day and those with young kids can’t make it in the evenings. I guess we have a lifestyle that doesn’t give much room for engagement in the outside world. Life carries on for everyone else.

Our play lady had the great idea of replacing the Christmas tree with a toy kitchen. Daya loves the kitchen. She only plays with it for about ten minutes in any given day. She gets tired.

I bought some play doh which has become a new favourite. I’m running out of ideas. She’s also been playing with a playmobil pizza set in her bed. She asked me for twenty dollars in her best Vietnamese-American voice. I laughed so much I cried. I told her it better be a good pizza for twenty dollars. She’s been watching too many videos on YouTube and has picked up their accents. She’s also learnt colours and numbers! She gets tired quickly and the ipad is really like having company but more importantly a distraction from pain, nausea, loneliness and boredom.

The chemotherapy plus the antibiotics for her recent infections have really knocked it all out of her. Sometimes it feels like two steps forward and three back.

Towards the end of the week, I’d had enough. It’s hard to function with lack of sleep. It’s hard seeing your child drained and depleted. Vomiting ten times in a morning. More in the evening. Straight after a nap. Even tough Daddy finds that hard. So you stay quiet and calm. Things don’t always go right, it’s tiring keeping on top of things all the time, not because you’re a control freak but because you have to as you’re the one who keeps spotting the errors, and I was just done dealing with people. It’s exhausting when you have to do it day and night. I switched with Daddy and cuddled Anaya and Jasmine. I had a quick shower and it was back to ‘work’ at home. I did some focussed speech therapy with Jasmine. Nani has been doing an amazing job with little Jasmine. Jasmine will often toddle over to her and climb on to her and sit in her lap. She looks like a mini version of Nani. She knows how to get what she wants out of her, mainly ice cream from the freezer. She’s growing up fast. I’ve missed the baby years. Esther is back so everyone has been happy and having a lot of fun and home. Anaya was great. Full of beans. She cried when she saw me. I was confused. She thought Daya was coming back home as well and was very upset that she wasn’t here. I guess for her also, it is ‘still not over’. I was in bed by 10pm. I fell asleep with Anaya, my little teddy bear. Week 7 is almost over.

4th January

We went downhill.

Daya has picked up an infection. She’s been very unsettled and in a lot of pain. Daddy stayed with her and slept 2 hours each night for around three nights. He’s completely depleted. We were due to swap but for continuity of care he stayed; it helps to ensure one parent stays throughout to articulate her progress, problems and history. I stayed with her the other two. He is going back to work.

We went to the Park. Anaya had a brief but wonderful sojourn to Disney on Ice Dream Big.

Daya last week:

She had Ruthie again this week. She perked up for a few days before her infection. And now, she’s down again. However she is putting on weight steadily which is good news.

“This kid is something else….she’s like a bull”, Dr M.LaQuaglia, NY Surgeon, 2018

Her top has a bull on it. “I saw this and immediately thought of Daya”.

That’s why our friend bought it for her at a Major League Soccer (MLS) event in NY.

Immunotherapy

Immunotherapy is going to be painful.

‘The more pain, the better…it shows that it is working’.

We have started treatment already.

She has started isotretinoin capsules. We heat them. Chop them up. Carefully squirt them on to a warm spoon. Mix the contents with some oil. A few swift glove changes and hurray! It’s horrible. And we put it into her NG tube straight to her stomach. Apparently I look as though I could be Walter from Breaking Bad (I haven’t watched it but it’s about a chemistry teacher who starts making his own drugs for sale).

So far she has a dry sore throat, nose bleeds, dry itchy skin which troubles her a lot, and dry red eyes. This is the prepping stage.

The following has been cobbled together from cancer.org because I’m too tired to explain it, I won’t plagiarise and it is accurate and concise.

***

Immunotherapy for Neuroblastoma

Immunotherapy is the use of medicines to help a patient’s own immune system recognize and destroy cancer cells more effectively.

Monoclonal antibodies are man-made versions of immune system proteins that can be made to attack a very specific target. They can be injected into the body to seek out and attach to cancer cells.

A monoclonal antibody called dinutuximab (Unituxin) attaches to GD2, a substance found on the surface of many neuroblastoma cells. This antibody can be given together with cytokines (immune system hormones) such as GM-CSF and interleukin-2 (IL-2) to help the child’s immune system recognize and destroy neuroblastoma cells. This antibody is now part of the routine treatment for many children with high-risk neuroblastoma, often after a stem cell transplant.

Possible side effects

Side effects of dinutuximab treatment can include:

  • Nerve pain (which can sometimes be severe)
  • Leaking of fluid in the body (which can lead to low blood pressure, fast heart rate, shortness of breath, and swelling)
  • Allergic reactions (which can lead to airway swelling, trouble breathing, and low blood pressure)
  • Vomiting
  • Diarrhea
  • Infections
  • Fatigue
  • Muscle and bone pain

***

Pain is to be expected. All the nerves will be targeted. This is due to the fact that neuroblastoma originates from nerve cells. The more pain, the more likely it is to be working. She will be on a lot of pain relief.

If she copes well with the initial cycle we will have more treatment cycles across several months.