Zack

  Having a sick child can be one of the most emotionally overwhelming experiences for a parent. It often brings a deep sense of helplessness, especially when you can’t immediately make things better for your child. The worry and fear for their well-being can weigh heavily, keeping you up at night, and the uncertainty of how long the illness will last or how severe it might become can be emotionally draining. At the same time, it often comes with a strong desire to be strong for them, to protect and comfort them as much as possible. Every small improvement brings a sense of relief, but the anxiety tends to linger in the background. There’s a blend of love, worry, exhaustion, and hope that seems to pull you in different directions, but the priority always remains clear — to do whatever you can for your child, no matter how difficult it feels. We have been in GOSH for two whole days now as Zack's port has been blocked. Which means he can't have blood tests or receive his chemo. It...

  Another milestone - a year today Zack has his port fitted this was the start of our new reality. The start of our journey, our new normal. (Already wrote a blog about his port - if you Havnt read it and want to know more)   This week we had a long chemo, we always expect a long day but this was something else.  We had a hearing appointment first which was all fine. Chemo can affect a persons hearing so it needs fo be monitored. So Zack is a pro at this now.  We head to the chemo ward and all is fine, we wait for the dr and the chemo. It all takes a long time and by now Zack is getting restless and won't sleep. They eventually hook him up to his chemo and he's exhausted so he sits in buggy with a cracker all happy and enjoying old McDonald.  Zack always tries so get his port out as I think it itches him (so far until this day he has never succeeded) I put him on my lap and go to pick up something from the floor the next thing I know Zack is screaming, there is ...

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...