Radioactive baby

Today is brief.

Today I entertained. Sang songs in the car. Knew all the words to Barry White and Rihanna. Today I danced around (with moon boot) the cubicle. Today daddy cracked jokes at my expense. Today daddy cried. I was too tired to cry.

Woke up 4am. Went to our local hospital sorted out meds and bags and supplies and headed down to our specialist Hospital driving the long way round so Booboo could nap.

The nurses are wonderful. They look after us and send us off on our merry way. And we are greeted with big smiles and hugs when we came back.

It’s been a long day. MIBG scan to show the extent to which the cancer has spread in the bones and around the body. We need to see if and how much the cancer has shrunk or spread. You may recall the chemo so far hasn’t worked as well as they would have liked it to. If you are black and white on such matters then it’s not working. The cancer is sitting there living existing and perhaps trying to grow and spread. She has an aggressive and difficult cancer.

She vomited after the scan. They forgot to give her anti sickness meds. The scan was about 3 hours long. So daddy and I had a date for lunch. Too tired to talk but we cracked some jokes. He did some work and I people watched. I was a bit hyperactive today due to coffee. Got lots done because we have to. Daddy even managed to do some work. We lost booboos fluffy hat with ears! It’s freezing outside. Must find gloves to function during the early hours.

In recovery, Daddy scooped her up and had a cosy cuddle. He cried. This man who has never cried, now cries and when he holds her he knows that each moment could be closer to the end. We desperately want her to live. This scan wasn’t positive enough last time. Watching them sitting there together it’s hard to know where one ends and the other begins. These two are thick as thieves – always up to mischief when they are together. He always makes h r laugh. Coming round from GA is difficult for babies. They feel confused and disorientated. They cry a lot. Today she was quiet. Worryingly so. The anesthetist was surprised at how many times she has been under in the last two months.

It’s days like this that you want to be filled with hope.

Daddy’s silence

Daddy is the most amazing and wonderful father to our girls.

Today, after a rough night I drove daddy and Booboo to our main hospital in town. Booboo had a platelet transfusion. She has nearly no neutrophils (0.07). She’s at risk of neutropenic sepsis. Her bum is raw and painful as she’s doing 20-22 poops a day due to antibiotics. She cries every time she needs to pee. She’s on IV antibiotics which are pumped around by her heart. She can’t pee without pain. As soon as she is well enough she has to do chemo. Today she had a radioactive isotope. She is now a radioactive baby.

Daddy hardly spoke today. He probably hadn’t even realised this but he hardly spoke a word and he didn’t eat much at all. In fact I only saw him snack on something once today. He’s spent the last few nights awake with her and even on the way back in the car we had to pull over 5 times to change her nappy. He changed her nappies and dealt with the painful screaming. Daddy doesn’t know what an awesome father he is. He can never do enough for his kids. He sees his role as a protector and provider. What he doesn’t realise is that he’s the cheeky-behaviour-inducer, the crazy ‘poop-poop-head’, the tickler, comedian, blower up of latex medical gloves (which he makes into all sorts of animal shapes), he is the bag packer to ensure all nappies and snacks are just in the right accessible place should we need things in a hurry and he is the joker who messes around and does all sorts of funny things to make them laugh. He is the book reader in Hospital at 11pm at night.

It is long and draining to be in hospital hour after hour. It is dehydrating. It tiring and it is relentless and she is in isolation so no going out and walking around the wards.

Daddy hasn’t been eating much over the last few days. Today Daddy didn’t make any jokes at my expense. Today Daddy is tired. He has been thinking a lot. Today, daddy hardly spoke.

His silence weighed heavy on me. Whilst I was driving home, I asked him if he wanted to talk about anything. Silence. I think if he talks he will cry and he doesn’t want to cry. So silence it is for now.

Mummy made a den

Today was a tough day. Full of people coming in during nap time so there was no nap.

Teething is horrible right now. Add to that the side effects of antibiotics and you have a sore bum bum! A very painful sore bum.

So today we were stuck in isolation. I rearranged the furniture a bit and made a den. It was fun and she laughed a lot. Our own little Baby cave. In the last picture, if you look closely, you can see the static lifting her hair upwards. Today we created some fun memories. And funny hair styles.

The train ride

Today a Nurse suggested that our journey was like being on a rollercoaster. I said it’s not, it’s like a train journey. And she said ‘like being in a tunnel?’ I said ‘no’. It’s full of green fields. Fun fields. Boring fields. You can see all sorts going on and other people and their lives carrying on but you can’t get off.

This journey is like being on a train ride. A never ending train ride. You can sit or stand and enjoy the view or get bored with green field after green field – but you can’t get off and you don’t even know where you are going. You have no idea if you are going to enjoy yourself at the final stop or be utterly devastated. People get on and people get off. Some are annoying and some are not.

I am physically drained. But more importantly I feel mentally and emotionally drained. I keep fighting my own emotions to ensure the kids are happy and stable. It’s my job to keep them feeling secure. I keep them going. I go from one child to the next. I go from one Hospital to home to another hospital to home. I’m fed up of driving. I go from a special needs child to a cancer child to a four year old (who doesn’t have healthy siblings to interact with). I go from making appointments to contesting parking tickets (I got one as I need to change a chemo poop nappy to stop it going on to her Hickman Line). I do speech and language to physical therapy. I explore and chase new ideas as others don’t know how to help in such a specialist area. I rearrange appointments. I apologise. I try and strategise the best time to book someone in. I drive to places I’ve never been to do things I’ve never done to ensure these kids have the best support. I still don’t get my child to her classes. I keep on top of the antibiotic schedules for three kids. That’s three kids with different doses. I keep on top of laundry. I do the ocado shop. I sort out school lunches. I keep school unform laundered, ready and dry. I keep on top of specialist milk prescriptions for both kids who take different milks. I make sure the milk in the fridge doesn’t run out. I make sure there is fruit for big sister. I don’t make any of my appointments. I’m so tired I can’t tidy the house or sort my papers out. I stay on top of weekly dressing changes and skin rescue. I keep going with nappy care and mouth care to care for sores. I keep feeding schedules on the go. I keep sleep routines in place. And I do lots of other things.

My life is relentless and today I’m tired. So tired in fact that I cried when daddy came to switch places with me at the hospital. I’m drained in a way that leaves me lost for words.

I realised today that you don’t beat cancer. You can, if you’re lucky, survive cancer. It’s cancer that beats the crap out of you.

E+3

Today I cried. Today we cried.

She’s not well. She’s not sleeping. Her antibiotics will now continue for 7 days more and she needs a platelet transfusion.

It’s exhausting. Having had several conversations about arranging next chemo around J’s switch on they have put it slap bang in the middle of it. Things feel like they aren’t going our way. Missing big sisters first day at school was tolerable. Missing J’s switch-on AS WELL feels terrible.

Cancer rips apart everything. It doesn’t just affect the individual. It takes something from everyone. It’s fractures families. Instils fear.

Emergency +2

We are exhausted.

Booboo is being kept in longer. Her line has another infection lingering in it. The line is like a dead end in the blood supply and if something does get into the body it’s a good place for it to sit and grow. When the line is flushed (they put fluid into it) the bacteria will travel around the body and make her sick.

So she is being kept in. Mummy has had a very busy non stop day sorting out the home and looking after the other two and has now switched with daddy. Daddy has had a tough job of entertaining and looking after BBB within the confines of the Hospital room. Today he has to go to work and get big sister to school and J up.

We are still rotating antibiotics. She has the dodgy poops to go with it. She’s tired but fun and friendly. We are waiting for blood cultures and swabs to come back.

It not always easy in a hospital. Aside from the confinement every now and again you can come across an asshole. Rather annoyingly I had a run in with an overconfident and uninformed Nurse. For the first time in my life I had to speak to the the Nurse in charge and things were resolved quickly and nicely. I haven’t seen the other clown since. The nurse in charge understood and was disappointed. She’s looked after us for a while and is wonderful.

It doesn’t pay to preach to the choir. And then when the choir (me) is more knowledgable than you it doesn’t pay to assert your positional power over them. Anyway, she knows mama bear isn’t happy. Our paths will no doubt cross again. Moral of the story: read the drug chart before you come in the room, read the notes, listen in your handover, appreciate the level of intelligence a parent might (miraculously- rolls eyes) possess and don’t accuse a parent of being tired when they get pissed off with your bullshit comments as you back track to cover up. Surprise surprise it might actually have something to do with your own level of incompetence. It got to the point where I ended up saying, ‘Not every parent who comes in here is thick and uneducated’. And that sums up the night.

The day was busy. I miss the kids. I miss my bed. I miss us all being together and not having to worry about anything.

Here we are having our 6am iv.

Emergency + 1

Technically I think this is our 8th proper emergency since being diagnosed in August.

So today. I woke up early and big sister and I had breakfast. JJ dined with her Nani (grandmother) on a nice warm bottle of milky. Nani and JJ are best buddies. More on that later.

So we made it to GOSH by 745am to pick up some important medication for BBB. My little buddy helped me out. I was hobbling around on my fractured foot (yes I’m still carrying on about that because it is agony).

It was lovely spending time driving down together albeit very early. But we are active like that. No long early morning laying in when you have twin babies! And it’s Christmas so we danced to Wham’s Last Christmas. She has no idea who George Michael is!

Medications in hand, we turned the car round and came home before the ocado shop.

I however went to the other hospital to take daddy and Booboo their breakfast. Daddy slept with Booboo last night. She’s on different sets of antibiotics on rotation. It was a disturbed night for both. She has a big blister on her lip and isn’t feeding properly. She has mucositis which is a side effect of chemotherapy. It is when you have inflammation and soreness of the mucus membranes; so the lining of the mouth and the intestines become inflamed and sore. There are often blisters. It’s painful and irritating.

I then went home and made lunch and dinner and snacks and had a quick cuddle with JJ. Ocado had arrived! Yey! And I had forgotten to order 5 things that no one told me we needed!

Then we went to see a theatre show with big sister. I made it there (if you saw my post of yesterday you will understand!). We were early and stumbled upon a park nearby. It was freezing but we had fun for a bit before the show.

Meanwhile Booboo was taking her first steps with Daddy at the hospital.

They also went out for a walk in the pram. She’s always happy with him. He pulls funny faces and does silly things.

After the show, we went back home. Every one had dinner. Big sister was very tired. JJ went to bed. Big sister had a story and was tucked in with love. Nani was too exhausted to speak. I packed a bag of dinner for Daddy and snacks and went back to the hospital. I took some treats for the nurses. BB was hooked up to yet another IV for antibiotics. Her face was notably puffy and overall she is deeply exhausted and needs to sleep a lot. Daddy is doing an awesome job and is tired and worn down. I spent some time talking to the lovely doctors and then went to have my painful foot x-rated. One bone is healing nicely and the other is painfully sore.

I then got home late at night. Checked on JJ and am typing away here.

Here’s a conversation back at the hospital:

Me: do you think the people in the building opposite can see you in the bathroom next door?

Him: no the windows are reflective.

Me: if that’s the case then why aren’t theirs. We can see them. Maybe they think their windows are reflective too.

Him: they can’t see you on the toilet! Ok!

A few minutes later:

Me: ummmm if the windows areeeee indeed reflective then why have they invested in blinds inside.

Him: oh!…..I had a shower in there! They’ve seen my bum.

Me: (jaw to the floor/ eyebrows to the sky)

So all in all, it’s been a long day for everyone.

Daddy is tired. Mummy is tired. Nani is tired.

JJ is asleep. Big sister may be coming down with something. Booboo is exhausted and feeling unwell in hospital.

Goodnight everyone.

Thoroughly exhausted, Mummy x