Heart over Mind

We are waiting to have detailed scans done. It’s always under general anaesthetic. It a two day affair. This will tell us how well the chemo has worked and if anything has spread.

Obviously, not a day goes by where I don’t think about this.

My heart tells me very strongly that she’s going to make it. She’s going to make it and we will be fine. Time just needs to pass so that we can be long enough in the future – a point where we will be able to look back and say we made it. We are here.

My mind tells me the rest. It an aggressive cancer. It can relapse and refract. It can come back quickly, easily and a lot harder.

Don’t get your hopes up many kids die the survival rates aren’t great.

Don’t get excited. Small steps. We just have to keep going and exhausting ourselves. We will win the battles and hopefully eventually that’s how we will win the war.

Either way I’m scared. I believe she can make it. I believe she is tough. I also know cancer is something we can’t control and is a killer.

Her body isn’t recovering as it should. She’s weak and it’s taking longer and longer.

My heart believes she’s going to make it.

My head tells me to wait and not get excited.

This is them. Before it all began.

Little update

Sorry for no update or posts recently.

There has been too much going on.

I’ve also had several sleepless nights due to JJ teething and Booboo being unwell due to side effects. So I’ve been up between 1am and 6am every night. Going to bed around 10/11pm.

And finally today I was so exhausted that my eye balls were aching, my body was too slow and I was vomiting. I feel completely and utterly jet-lagged and unable to conjure up any energy. The nausea from fatigue was debilitating. And big sister is now at home on hols.

Luckily this week we hired a temp Nanny who is helpful and involved. She is twice as fast as I am. Sadly we won’t have her for long.

Anyway. It’s been a struggle. It always is.

Let me gloss over the crap stuff and tell you good fun things.

The glossing over bit:

Booboo is struggling at times and is weak. She’s been on special injections to increase her bone marrow. This makes her bones ache. She finds it hard to sleep and settle at night. There are tears. She’s had a blood transfusion and lots of bloods. Her liver results are a bit out. She’s medicated a lot throughout the day and night.

We are waiting for some very long scans. She’s going to be under for a long time this time.

Big sister had to go for a scan to rule out any cancerous growths in her abdomen. She’s fine. She was quiet afterwards.

It was the same room and same scanner that we had for JJ’s brain and for Booboo’s neuroblastoma. I thought it best I go than Daddy. It was shit. Her scans were all normal and fine. She was quiet afterwards.

She asked to go to the park afterwards but I said she had to go back to school. Why mummy? Because the government said so.

I think in a few weeks the Government might insist that all school age children eat Porridge for breakfast! However weetabix is fine for now (even with the Chocolate chips).

The kids have been home. It’s been fine. I’m struggling. Badly. My health is a shambles right now.

So the good stuff.

JJ has been drawing. And hearing! She likes sitting but needs to have a lot of support to do so. She needs to be held all the time. It’s tiring. We gotta new walker but it was the wrong one.

They are both back together again. Fighting over toys, talking to each other, slapstick comedy, mostly ignoring each other or fighting over a toy. If I sit down on the floor they immediately rush over to assume a position on each thigh. I then try and make sure they don’t touch each other! No fisty cuffs!

Big sister was cute when she was singing and skipping her way to school in the rain.

Booboo’s unimpressed, bored and tired face in the next picture sums up my week this week.

She’s very tired. She’s slow to recover this time.

It’s a bit Groundhog Day this week.

We spend our days busy and non stop. And it’s not fun sometimes. It’s just…well it’s hopefully fun for them but it’s draining for me.

Cancer and cochlear implants aside, we are still raising twin babies which in itself is a lot of hard work. And there is big sister too but luckily she’s easy.

Blood Transfusion and Injections

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.

Wabbit

The new word is wabbit/rabbit.

Being home is such a tremendously exciting and happy time for her. She’s in love with her new toy wabbit. And Wabbit goes everywhere.

Being back is hard. Trying to be normal but nothing is normal. Trying to enjoy everything and knowing it’s all trying to be enjoyed and remembered for a reason. It’s not easy.

Just today, I’ve been running around like a chicken. Laundry. Medical appointments. New appointments. Hospital calls. Nurse visit. Teacher of the Deaf visit. More calls to radiology and the list goes on all before 1pm. And in between raising and keeping two babies safe, fed and down for a nap. Oh and keeping on top of lots of medications.

I’m tired. My body aches. I felt sick today. Am hoping I’m not coming down with something.

Today like every other day we stayed positive. We played. JJ and I played. Booboo and I played. They argued over the same toy. JJ gets tired easily. It’s hard for her. But she’s tough and resilient. She had a helmet fitting today and she looked like a cute like Biggles. I’m worried about her. She has no stability in her body. She doesn’t want to use her walker. Sometimes she’s happy to not hear. I got to sit with big sister and play snakes and ladders and watch her dance. Today her dressing up outfit was a mixture of wonderwoman meets Nurse. I also got to read her two bed time stories and have a cuddle.

Booboo and I have been away too long. I’m too aware of everything. As the Captain (sorry daddy) of this ship I need to be observant and forward planning. I need to sail us through this storm with the minimum amount of damage.

And then I need a holiday. A good holiday or maybe that’s what the call retirement. I suppose if you’re a stay at home mum you never retire. You don’t have the luxury of before and after.

Anyway, back to reality. The nights are difficult. Hours awake with a crying Booboo. She’s in pain. We give morphine. It’s all horrible and exhausting and luckily daddy gets big sister ready in the morning for school. It’s physically draining being up several hours a night after the long days we have.

So we remain on close post-chemo watch; waiting for Booboos next emergency. The doctors felt her body wasn’t able to recover as well as it should have during the last chemo. So now this time things could go badly wrong and quickly.

So for now, I need to get some rest as I may need to leave the house at any point. The bags are packed and ready already.

I’m sad. I’m tired. I’m dressing it up as a happy and fun time for the kids. It’s great to be home. A lot easier and my mind runs away making plans and then I realise I need to hold on; we can’t all go to a restaurant to eat, or to the Zoo, or on holiday or …anything as a family.

So we will just stay at home and visit the hospitals and that’s about it. The new normal.

Chemo Round 8 unexpected day 6

Well I cried when I woke up. I just wanted to get home.

I’m so tired of this shit.

We tested her line and it worked well enough so we could come home. They forgot to do something to it. Luckily I remembered half way home. We called them and then arranged to go to our local to have the line heplocked. This wasted an hour and half in the late afternoon. At least I remembered. But now it seems the line still has a clot in it.

I cried when we left.

During the week, one of the nurses asked how Jasmine was, then another asked and slowly I realised they all knew about the enormity of how fuckt our situation was – they were showing they cared. It has all been discussed and explained to the medical staff some time ago. They think it’s too much for someone to go through. ‘You’re a great team you and daddy’, ‘it must be so hard I can’t even imagine and I see a lot here’, ‘its just awful’….these nurses are amazing – not just because they said something but because they care.

Well yeh it’s fucking awful. We are home. I cried when we left and the nurses hugged us and said good luck for this round.

Daddy cried when he came to pick up his Booboo. She was so happy to see him.

So back home now trying to be ‘normal’. Jasmine was happy to see me. Big sister was almost happy to see me but I think she wants to tell me that she’s angry I left her for so long. She’s too young to find the words. Tomorrow I’ll help her work it out.

Home. Home is where…the hospital bags need to be unpacked, the laundry needs to be done, the medicine time sheet needs to be constructed, the syringes and meds need to be prepared, pain relief administered along with dinner, milk and bedtime routine. I’m shattered and confused about how to feel. I’m so tired I want to feel happy about being home (which I am) and I feel slightly on edge about what’s going to happen next and when. She will spike a temperature soon enough and become very ill. The question is when and how badly ill. Again it will be me rushing to the hospital and living there. I don’t want to deal with what’s to come …but I will. I have to.

So today, tomorrow or the day after things will change. I’ll miss the school assembly, JJ’s Hospital appointments and just time at home with them whilst they are so young and adorable.

So a week holed up at a hospital where we were in isolation and alone which meant I had to get things done when she was sleeping as I couldn’t do things when she was awake. She wasn’t allowed to go to the kitchen to help me make tea, return a tray or sterilise her bottles. So I was always busy.

JJ has grown taller. She seems to be more active. She was in her usual happy and playful mood when I came home. I’ve realised I’m incredibly concerned about her developmental delays.

I wish I could just bimble around the house with not a care in the world. I wish I had three healthy kids.

It doesn’t leave you. It also doesn’t get better you just get more used to it. You get used to the tunnel of chemo and sickness. 7 months of this shit so far. I’ve destroyed her body. I’ve probably killed her fertility and her hearing. Her body aches. She’s too weak to stand some days. This is what they call ‘long term effects’. We also have the issues of not being able to walk properly following chemo.

We got through this week with help from friends.

Chemo Round 8. Day 5.

It has been a long week and an even longer day.

A long, demanding and difficult day.

My energy has been wiped out.

I woke in the morning and started to pack my bag and tidy up the room with high hopes of going home.

We are staying another night for now. Her Hickman Line isn’t bleeding back. They need to put some blood thinners down the line to dissolve some clots. This is the third time they are trying this. The line just isn’t bleeding back. But it is going in so they gave chemo today. A long 6 hours hooked up to the machine. She was irritable and agitated and it was exhausting to manage her through the 5 long hours. She was asleep for the first part. I feel drained.

I didn’t get a break today as I’ve been alone most of the week. Aunty Lana turned up impromptu with a muffin and some tea! Exciting times. And some snacks which I later discovered in the bottom of the pram. Sadly she couldn’t stay long. Was great to see her. She made Daya smile a lot. It was a brief burst of energy. And then she had to dash back to meetings. And we went off to start chemo.

I feel she’s going to kick this cancer. I feel she is tired and exhausted but she will kill this cancer and beat it. I have a strong sense of belief about this. I don’t know why but it’s there. And I believe it.

Today the nurses have been lovely. Daya is cute. We popped out to some shops and she got lots of love. And then we rushed back to try and fix her line. We are still in isolation. So late at night we stood on my pull out bed by the window and waved to passing nurses and parents.

She’s brave. She’s strong. She’s solid.

We are staying in overnight to let the blood thinners do their job and hopefully in the morning her line will bleed back wonderfully. We really need this to work.

She is also on Tamiflu to treat her flu. We are hoping it doesn’t come back as she becomes more neutropenic.

Good night all. It’s been a tough day but we believe in the healing power of love and sleep!