Zack

Scan results  Scan results were good positive for now, but I can't help think about the what ifs in the future, I guess that will play on my mind forever.  I am writing this sitting by a chemo bed, it's a long chemo today which means we will be at GOSH most of the day.  We are in a ward with other children all going through the same shit we are but yet all in very different circumstances yet all with big smiles on their faces taking it all in their stride.  It's been a long day. Zacks chemo was hard today, he screamed from start to finish. But it wasn't just a cry it was a scream! Like he was in pain, calling for mummy, I was there but he just couldn't stop screaming! It was a hard day. I couldn't take away the pain he was feeling: I couldn't help him. The drs think he had an allergic reaction to his anti sickness, which can make you scream, go dizzy and hallucinate. Obviously he is too young to tell me how he is feeling! After about 45 of me wrestling him s...

 A hospital room is a funny place, lots of nurses but yet so lonely ! Lots of noise yet so quiet.  We've been in and out of Great Ormond Street and Barnet Hospital so many times that you'd think I would be used to it.  Everytime they say we need to stay in my heart skips a beat and I feel deflated. I blame it on myself. Why now? Where has he been? Who has he seen?  How long will we be there for? What will I do with the other children? Will they be okay! So many questions with answers not even the professionals can answer.  I am currently in the hospital waiting for Zack to have a platelet infusion. As well as anti biotics, and all these questions go through my head at least 100 times. Zack had a scan this week, this is our third one. We wake up at 5 and head to GOSH where we are seen at seven. Zack couldn't eat from 4, so I have already woken him up in the night to feed him. By about 9 he is taken down for the scan they have put him to sleep using sedation medic...

  Chemo  First chemo day 5th September The night before I packed up lots of snacks, toys and all the paperwork I needed for his appointment. It was the first chemo, we didn't know what to expect. Sam took the day off and we got an Uber together to GOSH - we had to drive as Zack isn't allowed to use the train - too many germs.  We arrive on the Safari ward, the nurses are all so lovely, kind and friendly. We have gotten to know them over the past year.  They showed us to our little bay? there were about 6 bays to a room and on this day they were all full. It was heart breaking to see all these children going through this. Some of them had set up their bays with all their things from home, some of them were even giving themselves medicine on their own.one thing I took from that day was however rubbish it was for the children they were all smiling.  The nurse came in and checked all Zack's vitals, weighed him, and made sure he was well. Eventually he was hooked up ...

  August 29th 2023 Port day! Zack was booked in to have his port inserted at about 11 o'clock in the morning. He couldn't eat and drink before then and he gets really hangry as we know from my last blog post. He was horrid! My sister came with me to this appointment as he had to go under a general anaesthetic. I had explained to my the other children he was having a little operation, they asked me if I was coming home as last time I didn't for ages. This comment made me so sad. I reassured them I would be home that evening.  They checked Zack over and said he was fit for surgery, even with a cough and a cold. We had sung him so many songs, dances around the room trying to pass time and stop him thinking about food. They gave him some sugary water and did all his pre op assessments. I went with him done to the surgery room - it was actually next door to the room he had had his surgery in 3 months prior. This brought back so many emotions, I held back the tears, gave Z...

  16th August  The day had come, I'd been having nightmares all weekend, I wasn't sleeping thinking about the outcome of what the oncologist was going to say. I had looked up lots of things on the internet, which I should have learnt from last time not to do.  We take a deep breathe and walk into his office. He explained to us that thankfully it wasn't cancer but a rare form of brain tumour, so we could relax at little but his tumour had come back. There was no way they would operate so our only choice was to give him Chemotherapy. I couldn't believe they were talking about my child, my gorgeous little 9 month old. Our lives were about to change, our routine was going to change and everything would be different.  He would start off with intense chemo every week for ten weeks, and then it would get less frequent but more intense, he would probably be in hospital a lot and would need some platelet and or blood transfusions.  We got designated a lovely nurse who we...

  1st  August  The MRI day had arrived, we were a bag of nerves. This was the day we had been waiting for, we were so positive, Zack had been making such good progress and was so happy. We got to GOSH at 6:30 in the morning, ready for his sedation, he hasn't eaten or drink for hours and was already starting to get hangry.  They manage to get a canula in and said they were already to go, just as we get called in they tell us the machine has broken down and we have to wait for it to re start, this takes an hour and by now Zack is screaming and is inconsolable as he's starving. Eventually it's working and he goes in and had his MRI. Something we have learnt from Zack being sedated is that gingers need more sedation as they fight it more. This is true with Zack as he woke up half way through.  A few hours later, MRI done, Zack gets his food and his milk and we can go. We were so positive all was going to be okay. They told us we would get results within 1-...

  April 28th  Sitting in the PICU listening to all the bleeping and buzzing puts you totally on edge, you jump every time a different noise bleeps and you worry each time.i could feel my heart beating so fast but i just wanted to be there with him. At about 7 he woke up , they told me I could hold his hands and stroke his face but I couldn't yet pick him up as he will still on a ventilator. I sung to him and stroked his face until he fell asleep again. Sam joined me at about 7:45 and we went to have breakfast in the waiting room. There were lots of other parents there all in different situations but all so positive. We got talking to a lovely couple whose daughter was in the PICU too and we saw them Every day for the whole time we were there, we nodded and waved and tried to smile at each other.  The morning was long as we were just waiting for the doctor to come, the nurses told us that now was a good time to go home and see the kids. We wanted to be there for ...