Back home

We are home. After much contradiction and calls back and forth between hospitals someone decided to assert themselves and say it was fine to stop antibiotics and for us to come home.

I’m fed up with checking and double checking and making sure I ask all the right questions; which inevitably means someone is seen to not have asked the correct questions and has to then go back and make more calls.

Being back home isn’t any easier. JJ has stalled in her physical progress. She still can’t do many things. I’ve noticed her dragging herself along the floor a lot more. She’s strong.

I’m terrified for her and her future. She can hear sounds but doesn’t always recognise it’s me or the direction of the sound.

Big sister fell over at school today. Came home grazed. Ripped both knees on her tights. Scratched up her nose because ‘I put my hands down but my nose got there first’. Doesn’t feel great. All three kids needing TLC.

And I need to do laundry, cook dinner, bath time, and keep them amused. It’s too tiring today after many nights of broken sleep.

I go from one place to the other; tired and constantly busy. I’m not sure how much longer I can function like this. This is going to take years to fix.

It’s not fun. Always looking for the good bits and unable to take anything for granted. Never being able to know if Booboo will be ok. We are waiting for scan results. Waiting for Jasmine to develop physically. Waiting to see if she can hear anything.

It’s moments like this, the morning after the night before when you’ve just come back, and you realise it’s all just enormously draining. It’s all unfair and why the hell does it have to happen to us.

It’s just relentless. And I feel helpless. I can’t do anything more than I’m doing. And I can’t save her life or provide the other one with key features she needs to function. I can’t stop Big Sister from seeing this.

Inside out

Today we stayed inside. And JJ finally got to be outside.

Today JJ got to hear cars and ducks. Big sis spent time with both sisters.

Booboo stayed with me. Locked up. We did some stamping. Found some empty corridors to run up and down via the back lift via an underground route. Yep. I found a way. Was near the mortuary though….

Some pics…

This is where we sleep. I have a pull down bed. She’s next to me. Her IV pump is on the other side.

I love her little face poking out. An afternoon walk around the park. This must have been hard for Daddy. Big sis was excellent. She was allowed to sit in the pram if she explained everything to JJ. All the way she said ‘that’s a house, that sound is a duck, that’s the leaves in the tree, there are some people there….’. Makes my heart melt.

Waking up after a long nap.

Using Aunty Jenny’s stamp set to make cards for the nurses.

Drinking apple juice from a syringe as it’s more fun this way.

Daddy, Big Sis and JJ came back to some warm hot scones, lovely jam and creamy cream on the doorstep. On the day I’m not there….daddy doesn’t know how lucky he is!

Her blood counts haven’t changed. We are going to live here an extra day or two. Or maybe 3 or 4. We are just drifting into the future not knowing what is going to happen…

Driving Miss Big Sister

We are in protective isolation. Not allowed to leave the room. The play facilities here aren’t great and the room is closed 2-3 days a week. We can’t go in the room anyway. So we bring our own toys. Anyway even I’m bored.

Today Daddy and Big Sis came. Big sis got bored so I decided to take the opportunity to go home and hopefully see J and have a shower. I had a two hour window and made it back in an hour and half. Impressed with myself.

On the way home, driving carefully, catching up and singing to the radio I missed something she said. I turned the radio off and asked her to repeat it. She said:

Mummy, I’m sad that both my little sisters are so sick.

As a parent you’re supposed to have all the answers (at least most of the time). She broke me with that line. I try hard every day to keep them from feeling sad or feeling the situation. She’s four. She has 14 summers left before she leaves for university. It’s my job as a parent to give her the best childhood I can give her. I feel robbed of that. I feel as though our moments, experiences and happiness have been stolen. But we try and find them everyday in something; in our kids and the funny things they do.

I stayed quiet for a few moments because I was fighting back tears. And thinking carefully about what to say. Then I acknowledged and said something supportive.

‘I know, So am I. I’m sad I don’t get to spend more time with you. And I’m sad they are sick but as they get bigger they will get better and stronger’.

Did I just tell a lie?

I’ve always been hyper aware of the impact these two have on Big Sis.

My daughter will not be her sisters keeper.

This is what I said when Jasmine was diagnosed. I don’t want one sister taking on the responsibility of looking after another. That’s my job.

I can’t change what she sees. We make every effort to do the best we can to stay positive. The only thing we can try and control are the experiences they have. We cannot stop them from seeing things.

When I drove back to the hospital and parked up I started crying. I left two of them behind. I just can’t make it any better for them than I am. I’m trying.

Eventually I spoke to Daddy. He said ‘we are doing everything we can. She’s learning empathy. That’s a good thing. She’s learning empathy at a young age’. He’s got a very valid point.

We are both on this journey together. The load is heavy and we have nothing else to talk about today. We have both felt quietly sad. It’s hard.

Her blood count has remained the same. It’s never been the same the next day. But it is the same. Here we are fractured as a family, all over the place. We are living in a hospital room and it’s hard.

I am not breaking down today because I don’t want him to see it. He’s not breaking because he doesn’t want me to see it. We both know it doesn’t feel good. So we feel quietly numb whilst not knowing what to think ….because we are so busy trying to not think about it.

Before we went home in the car Big Sister was playing with B.B. and keeping her happy and making her laugh with crazy dancing. In fact at one point when she walked in, B.B. was saying her name and patting her pillow in her cot telling her to get in. We smiled at each other. She adores her big sister. She loves the company.

Still here…all love

I’ve lost count of the days.

We are still here.

I’ve hired a Lion to temporarily help with feeding duties. I don’t think the Boss was impressed.

I’ve made a lot of people laugh today. So far so good at 10am.

We did some drawing. Ate some snacks. Took the antibiotics. She had a wash. Drank some more milk. Took the antibiotics again. Helped the nurse do things. FaceTimed her pals. Came up with a good entrepreneurial business idea. Followed this with more milk and a siesta.

We spent today confined to the room. I left three times. Twice briefly to get a quick cup of tea and rush back with it and once to cuddle big sister goodbye as she was crying on her way out. She wanted daddy to stay and mummy to come home. She needed a little chat and a cuddle. Booboo didn’t leave the room.

Today we danced to Katy Perry, Kanye west and Calvin Harris. In fact anything. We danced and the nurses danced with us. We did a dressing change and she was wonderful. She just lay back and let us do things for ages. A nurse came back on shift and looked at her and I could tell she had been thinking about things. We were doing a dressing change and she was standing next to us holding her phone up to entertain Booboo. She stood there watching her. She said ‘I really love this kid’. She had to fight back tears. She has a two year old son herself. She’s always singing songs to her and showing her clips on YouTube. She’s wonderful. It was hard to see her fighting back tears.

Daddy and big sis came to visit. Booboo was happy. Our time was brief as it was late.

We FaceTimed some of our favourite friends and it made Booboo smile. We are stuck here for many more days. It’s lonely. It’s boring at times. But we are doing great. And having fun. The nurses have given her one of their trays and some syringes, saline and a line to play with. So now she has her own set.

I miss my little J.

Still here post chemo 6

So…..

In the morning the doctor thought we would be going home. I told her unlikely given previous circumstances and situational decisions.

Anyway….we are staying for as long as it takes for her count to come up to 2.0. It is currently 0.01. God be with us, friends come visit us and toys don’t run out of batteries during this boredom and germ filled odyssey.

We live at the hospital. It’s boring for her and a germy place full of sick kids. The staff are bonding with us. One Nurse cried. They ask about the results and when they will come. They know somethings afoot with our situation and they keep things calm. A boy died here recently and I think they are feeling upset about their little Booboo.

She’s lost weight. She’s looking thinner. She’s taking a battering. She’s weak. I don’t recognise her in this picture. It hurts to look at for too long. Makes me think she’s slipping away and I don’t want to think that.

Today we went out Out. Yes we drove home. I had a shower, played with JJ, fed her and Booboo had the best time with Nani (my mum). She cried out for her when we had to come home. Nani was happy to see her and sad when she left. I was fighting back tears.

We returned to the hospital and drove around for ages trying to find parking. Meanwhile Booboo slept and I ate some fizzy strawberry laces and felt the warmth of the sun on my face. Small pleasures.

I realised something last night. I may have to tell big sister that her sister has cancer. I may have to tell her a lot of horrible things this year. I don’t know how big sister would cope without her if that was the outcome. I realised I may only ever need two car seats and when I look in the rear view mirror I will forever miss and watch for Booboo.

Anyway. We are stuck here until she is better and when she is we should hopefully get a few days at home and will need to start chemo again if that is route they want us to go down.

Right it’s been a pleasure but my eyes are closing faster than I can type.

Emergency & MIBG scan

We were discharged two nights ago and two days ago we went to our other hospital to get our radioactive injection.

Instead of giving it on time the staff decided to go to lunch. Not good.

They were rude to the nurse with us when we went down on time for our appointment. Not good.

Delayed the injection. And delayed when the baby could feed and sleep. Not good.

Came home. Spent some time with the kids.

By spent I mean, had some quick cuddles, made a lunchbox for tomorrow, changed nappies, did the bedtime routine and unpacked and repacked the Hospital bag. Was supposed to have a shower. Sat down to sort out appointments for JJ for next few weeks and within an hour heard Booboo crying.

Rushed upstairs and we had a temperature. She was up even after the morphine she had an hour or so earlier.

So rushed to the hospital. Alone. I’m good at this. Bag was already packed. Next two hours were spent sorting out meds. Went to bed 1am and up by 5am. You can’t believe how much stuff you need for a baby in Hospital.

Then we were supposed to go to our specialist hospital again (yesterday) but had to tick lots of boxes as it’s a Hospital to Hospital transfer. Utter nonsense going on back and forth and wasting time. And then an irrational and irate phone call from a nurse to me which should have been for another Nurse; not good.

Anyway after lots of bs back and forth and boxes ticked and some shouting from the other side and poetic license from a Nurse on our side….and much time wasted…we headed off.

We were chilling. Had a fairly sensible ride down. Booboo slept which meant she wasn’t hungry.

Got to our hospital and ‘so sorry, so sorry for all the confusion this morning’. Whatever.

I think in all this nonsense they forget about the patient and the real human beings involved in the scenario. There’s sometimes a behaviour across the board to tick boxes instead of connecting with people.

They forget the cancer will kill her if nothing can be done about it. They forget the actual patient. They forget the parent.

So Booboo was nil by mouth from 645am. Went under at 2pm. I was there. I put her down. She was excellent. I kissed her forehead. She was amazing. I try not to think too much.

They strip her down. Give her medicines into her line and then they sedate her. Her little body is moved from my lap to the CT scanning table. They tell you to kiss her. Then they put the oxygen mask on her and tube her up. They put a gown on her and a layer of ‘hot air bag’ to keep her warm.

Meanwhile, I go off to sort out stuff but wonder round for a bit not knowing what to eat or drink or do. I headed to Waitrose nearby to by some snacks for Booboo.

This is us early this morning.

Waiting for people to sort things out. Missing our last chance for fluids on nil by mouth protocol.

In the midst of the draining nature of the day I have remained calm and stoic. I left 2-3 hours later than planned. Had to stop for a nappy change in the dark. Made my way back to the hospital via a quick drive by home and in and out again. I got to the hospital and realised I had forgotten the Potassium iodate pills to protect her from the side effects of the radioactive stuff. This was about 9pm at night. I had to rush to the car and home and come back before bedtime to ensure she took them in the right dose. My body aches.

This time after the scan she was very high and happy. It was a pleasure to watch her cheeky little face all high as kite. We were all very amused. Unlike the other kids who were crying and screaming the place down, which Booboo does too, this time she was a very pleasant and mild mannered drunk drifting on her happy drug-induced cloud.

I came back to the hospital without seeing Big Sis but I crept in to see JJ who was fast asleep.

At the hospital I ran though all the updates of bb’s medication with the nurse and gave some medications to B.B. I have to stay on top of all this and the times. I really am an Uber driver meets Nurse.

Rather amusingly this is her when she came round From her anaesthetic. She was happy. She is one funny kid. She loves the mask that puts her to sleep. She kept putting it on her face. Should I be worried? Haha

Back in our room, ordering Pizza again.

It’s been a long draining day. Let’s hope for good results because this is what it’s all about.