It’s all a blur, a tiring blur.
We have been at home for a few days and it’s been great. It’s also made me realise how accepting we are of the situation (in some ways) and how we have normalised the last few months. It’s made me realise just how far removed from normal we actually are.
I’ve been missing all three at home together. I’ve been missing both climbing over me. If one sits on my thigh the other one immediately comes over to sit on the other. It makes me laugh how Daya carefully lowers herself down to an assumed position. It’s harder for Jasmine but she gets there too. I spend most of my time on the floor playing or keeping the home and food etc all ticking over. I’ve always had a good routine so we stick to it. Much time is spent sorting out outstanding appointments and moving things around.
Being home I’ve realised we are missing out on a lot of things. Small basic togetherness things.
I’m desperate for this to all be over. I want more experiences together. It won’t be over even when it is – this is such an aggressive cancer it has a high relapse rate. It could come back smarter and inside an organ or the brain. I can’t think about this for now. But I know it’s there. Lurking.
So we have been home. J is amazing. She’s funny. Kind. Happy and engaging. The girls are always relaxing on me. J crossed her legs and lay back on to a cushion and Daya put her hands behind her head and lay back on to me from the other side.
I’ve missed this.
I’ve had time to read stories to big sister. I feel like I’m on a short break even though I have tonnes to do.
The flip side of being home is I’m on constant medication administration. And more recently I been asked if I’m comfortable injecting her (I don’t have much option to say no but still it feels shit). So now I’m a nurse again. I also have to call around and ask questions of hospitals because sadly our local is sometimes understaffed or don’t know who to ask.
It’s a bit stressful.
So her bloods have hit the floor. Her bone marrow doesn’t seem to be recovering. This is bad.
She’s still skinny. She’s tired. We are reaching the nadir of the chemo soon. She’s neutropenic again. 0.01. You don’t get much lower than that. I’m hoping she remains well and doesn’t develop any infections from the inside or out.
For weeks now we have had problems bleeding back her line (the one that goes into her heart). They have unblocked it many times with special anticoagulant. If it continues she’ll need an op to replace it. Am hoping we get some good news before that ever needs to happen.
The blood transfusion took nearly 6 hours. She was bored so she cleaned her pram. Someone somewhere took the time out of their busy lives to give blood. And now she has their blood. Some kind stranger somewhere is helping to save her life. Please give blood if you are healthy enough to give. Please. I’ll send you some sweeties to help prop up the blood sugar.
Let’s wait and see what happens. I’ll be injecting her myself over the next few days if they get the supplies to us in time.
Big sis, JJ and I went to the park. She chose her own outfit. We had a sensory filled time and it was fun. It was nice. I liked holding her hand. JJ signed ‘bird’ and ‘duck’.
JJ pretended to be a respectable member of society for all of two seconds. Then our good old crazy fun time genes came out. We missed Daya. It was good to get out for half an hour. Big sis and I watched her first Harry Potter movie together. She loved it. I still think she’s too young for it.
Last night, Big Sis, Daddy and I had a Lego session. I made the chameleon, daddy made the army truck and big sis made the pink car. It was fun to just be home and a luxury to be free to spend 30 minutes listening to
motormouth big sister talk about everything and anything.
JJ has pulled herself up in her cot! Sheer strength and determination. As long as she’s holding on to something she can pull to standing. Amazing for a child with her challenges. Crazy hair dont care.
I didn’t sleep until 2am even though I was exhausted four days prior. I was stressing and looking into nurseries and special needs and disabilities and educational plans with respect to JJ and her future. Nurseries aren’t keen on talking on disabled kids, signing or walkers or kids that crawl around or can’t sit still in circle time. It’s going to be an uphill battle and I need to start doing my research ASAP. I booked the twins into two excellent nurseries when I was pregnant. That was before all this happened. Now I need to research options and quickly.
Anyway nursery isn’t a priority. I’m happier with J home.
There’s a storm coming. This is the calm before the storm. I’m really hoping it’s not another hospital stay because they are always a minimum of around 5-7 days. Minimum! I’m whatever word comes after exhausted.
This is such a tough way to live. Staying positive, much love from me.