Not going home yet

We are being kept in, or more accurately daddy and Booboo are, and it’s not great.

Seems she has caught another sort of viral infection. She’s still neutropenic. Her cell count isn’t recovering as well as it should. Largely due to the impact of the chemo on her system and the viral infections she has already had. Adding a new one makes it worse.

So we are staying in. I will continue to do the back and forth and helping in two places.

She’s just not recovering yet. Both hospitals want her to remain home. Her next chemo has been put back by a week.

Nicu and scbu

I came across these today. From their time in Nicu. Daddy looked after them both for long hours whilst I was recovering in another hospital. I never fully recovered before I left but I was done getting to know my babies via pictures. Both were born at 33 weeks.

Booboo and JJ looking cute and new. And when big sister first met her sisters. I never got to introduce them but I thought these pics of them meeting were wonderful.

Big Sister

You are wonderful, kind and funny.

You made it your adventure today to make your sister laugh. You made us smile. I loved holding your hand on our walks to and from the ward.

You gave your sister a ‘huggle’ (hug and cuddle). You fed her mango pieces and watermelon. You made her smile. You let her climb all over you. And slap your face.

You don’t know that she has cancer. You just know that she is sick. I looked at you together and thought ‘please don’t ever let me have to tell her that her sister is dead’.

We have a round of chemo left before we reach a fork in the road. We aren’t thinking about it.

She was so happy to see you. J was happy to see you in the morning as well. They are so lucky to have you.

I’m grateful for the love and joy you bring.

Learning to park

I’m good at parking. In fact I’m very good at parking my car. I go back and forth to hospitals, pharmacies, more hospitals….Im good at reverse parking. I’d be great at fleeing a car park as a getaway driver.

Parking is something we do regularly – you travel somewhere, stop and leave at your convenience and come back and pick up where you left off and drive off when you want to. Now I’m learning to apply part of that to my life.

If I could speak I would tell you I sometimes feel an overwhelming sadness and sense of fear. But I can’t ever get those words out.

But you park those thoughts.

I would tell you I’m scared I’ll have to bury my child. Sometimes I cry in traffic. It’s got a lot less over time. It’s rare that I cry now.

I’m sad for the things my eldest is missing out on. I’m sad for what she has to see happening to her sisters and the reprioritisation going on in our home.

There’s too much clean folded laundry hanging around in piles. There aren’t enough hours in the day. My bones hurt. My muscles feel tired.

But you park all these concerns because nothing else is supposed to matter.

I miss him. We joke at each other’s expense. Now my best friend is living at the hospital and I’m at home. When I’m at chemo he is at work. When I’m at the hospital he is working or at home.

Someone asked me if we got time together ‘like lunch or dinner or a movie?’ I laughed in her face instead of ‘ what a f–king idiot, do you think parents like us have time for that shit. I don’t even get to shower. No they don’t.’

But you park the relationship. We have nothing else to talk about anyway. Can you imagine us at dinner. No appetite and nothing to talk about other than cancer protocols, skin rashes, balance issues….

You park expectations.

You park the future.

You just park your entire fucking happiness, right there …over there in the basement lower ground. Because anyone that has ever had kids knows it’s all about their happiness. And the happiest you have ever been is making those memories together. Giving them a good fun life full of adventure and good memories. From the moment your child was born you knew what you had to do and the expectations you placed on yourself were all about giving that kid a good life. Now suddenly we can’t make certain things better for either of the twins.

Well, I’m learning to park.

Big sister

Today has been a struggle. It’s been a bad day. Nothing in particular has happened.

Physically I’m exhausted.

Emotionally I’m tired.

Mentally I’m exhausted.

I don’t think about the future that much. I don’t think about the past. When I think about the future I worry about the kids, finances, life, the balancing act. All the normal things but they feel magnified for some reason as I can’t seem to do enough to make things better.

Daddy’s keeping spirits up at the hospital and messing around.

Booboo has been struggling this week. She looked very weak and tired. It has broken my heart seeing her like this. She’s not the same baby anymore. I really need this chemo to work.

So I took Big Sister along to work her happy magic. The pictures speak for themselves.

They played and cuddled through the IV antibiotics. She’s neutropenic and unwell and not allowed home.

Separately when we got home, I asked her to gently wake her sister from her nap and walked in to find she had climbed into the cot. It was cute. I thought she would just stroke her through the bars. Then she said ‘oh my little darling let’s get you out of your sleep bag and then we can have a nice long cuddle’!

We went for a walk today. To try and feel normal. It was draining for me but I thought it was important to get them out and to the park. Normal things. JJ hasn’t been happy today. She’s been a bit cranky for some reason.

Booboo has been tired, in pain and feeling poorly.

She is turning into a mini version of her daddy. A little clone. The more time she spends with him, it is hard to tell where one starts and the other ends.

I’ve been feeling sad and a bit overwhelmed today. Posting these pictures has made me smile.

I really need the chemo to work. Her cancer is solid. It forms solid masses in the body and the bones. It’s harder to treat. That’s part of why they call it an aggressive cancer. It also expands and explores the body rapidly.

You wouldn’t want to be me right now. And what I wouldn’t give to have some normal problems. I hope one day we can go back to normal boring problems. In time I’ll work out a way to help others going through what we are going through but for now I just need to get through it.

I miss daddy. I miss the family being together. Cancer fractures families. It takes something away from everyone.

My kids have lost the mother I wanted to be; because I am spread so thinly. They have lost time with each other. They are losing out on experiences.

Is it spreading?

We thought we might be coming home tonight.

But then ‘is it spreading’ came up in conversation right after ‘blood transfusion’ and ‘neutropenic’.

So her eye lid is floppy as is her leg. We think it’s a side effect of the chemo. There is a drug that can make this happen. However given the aggressive nature of her cancer and the fact it has already spread to some key places, the doctors feel they need to investigate the possibility that it is spreading and placing pressure on or distorting nerve areas. The neuroblastoma originated from the nervous system.

In addition to that her bloods were too low so they are doing a blood transfusion. Thank goodness for those individuals that give blood.

So she is also not allowed to come home due to her neutropenic count (0.03) so virtually nothing. There is no protection in her body. She shall remain, in isolation for a further 10 days, on two different antibiotics four times a day.

They will need to scan her to determine If the cancer has spread. I feel it’s unlikely but given everything that has happened so far it would not surprise me.