surgery to remove the tumor and the week following.

25 august 2015

Although we were on a bay on our own, we all woke up early. Me and Ste didn’t get much sleep last night, I was allowed to sleep in the bed with Morgan and Ste on a fold out bed beside us.

Morgan was on the morning list. which was good as he was already asking for a cup of tea and custard creams. I took him to the play room to keep him busy and we read a couple books and played with the trains.  Before long they called for him.

It felt a long unsettling walk down to the theaters. me and Ste decided it was best if he went in the room with Morgan while he was being put to sleep, i just couldn’t face it, so i gave him a kiss and told him i loved him and watched as they wheeled him off in his bed with his blonde hair and yellow blanket. 

The long wait was torture, so many emotions.Me and Ste were off with each other, we just was not coping well and took it out on each other. I was crying and shaking so much. It was hard. Then my parents and Ste’s mum turned up. She went off with Stephen and me mum and dad went to the cafe and had a drink, looking back at this morning, we should have been there for each other, but we just didn’t no how to be with our own emotions to try to deal with as well. 

We then all sat on the ward together and just waited and waited.. 

8 hours later..

we got told Morgan was in recovery and we could go see him. We heard him before we saw him he was screaming, we were told this was more likely from the anesthetic as he already had a lot of pain relief before waking. 

It broke my heart seeing him so small and innocent and screaming like he was. He had big bandages at the back of his head, and his voice sounded deep, sore from where he’s had a breathing tube down his throat in surgery. Finally when he calmed down he was allowed to the ward and he fell asleep.

A little while later the surgeons and oncology came to talk to us. They had a bit of bad news. They couldn’t remove any of the tumor as when they attempted to touch it, Morgans heart rate was not happy and kept dropping dangerously low. And the tumor was wrapped around the brain-stem. And now classed as inoperable. But they didn’t manage to get a microscopic biopsy.

I was devastated. I just thought all this would be over and he would have surgery and the surgeons would take it all out, I was naive. 

We soon realized Morgan was dribbling when he drank and couldn’t swallow very well.  And when he spoke it sounded slurred. Speech and language came to assess him and they said it was best for him to be given a ng tube and be fed that way for now. 

Later that evening Morgan was still sleepy and his heartbeat was dropping low. The doctors said he needed to go to icu to monitor him better. He was put on a drip and was put on steroids, as there was a lot of swelling in his head. 

That night Ste went to stay at his sisters house, as only one person could stay. I had to stay in a side room as you couldn’t sleep on icu. That night was so worrying, knowing no one was with morgan

26 august 2015

 The next morning I got straight up. I went straight into Morgan for 6.45, and the nurses told me he’s slept right through. And had put a ng tube in when he was sleeping. That was a shock to see. He slept most of the day. When he was awake he was quite vacant and the odd word that he did say was very slurred.

27 august 2015

Today Morgan was allowed back onto the ward. He was awake more today, Anna brought Heidi round today, we haven’t seen her for almost 48 hours now, I missed her so much.

We also was allowed a room at a clic sargent house, called billy’s house. so me and Ste could take turns at who stays with Morgan at night and our other kids could come stay and see us, it hit me so hard being away from my older boys Jayden and Regan they both have autism and Regan hated being away from me so much. And Heidi was only 3 weeks old, she was bottle fed which made things easier for us.

28 august 2015

Morgan woke up a lot better today, he actually ate today and drank fine! So glad he could swallow, we were so worried that it would have a lasting effect.

My mum Jayden and Regan came down today. They are going to stay for a few days in Billys house with me. I loved seeing them, Regan cried when he saw Morgan, he hated seeing Morgan with the ng tube and a canula in and seeing all the poorly children. And kept asking why Morgan wasn’t talking or playing.

30th august 2015

My mum had to take Regan home. He was just too anxious being around Morgan. It broke my heart to see him so upset and begging me to go home with him, but i no my mum will take good care of him at her house. Jayden stayed a bit longer with us. 

Morgan is still sleepy and not interested in anything. Hes not talking unless asked something, He keeps going in little trances, and he’s vomiting loads more again now as they’re weaning  him off steroids, all the weight he’s gained the past week, his losing again fast.

31st august 2015

Morgan had to have feeding tube, on tpn feeds now.

2nd september 2015

Today we noticed the back of his head is leaking fluid! He woke up and there was a huge wet patch all over his pillow and his bandage was wet.  He had emergency mri. And took straight for surgery to restitch his head back up and put an external drain in (evd) to drain all the fluid out. 

I went down with him for the  first time, I hated seeing him just fall to sleep like that. I felt so much anger inside, why Morgan? Why is he going through this? I wish I could take all this from him. 

When he woke he woke screaming and so sore! And had mittens fasten to his hands to stop him pulling his wire out his head! We took them off him later once he calmed down. 

4th september 2015

Morgan picked up a little today, sat on his bed and played for a short while.

Today was the big meeting day. We sat with the oncology team and surgeons, while Morgan lay in bed playing with a car and Jayden sat on the big chair on his tablet, being rather loud.

Prof walker said it was an inoperable astrocytoma. On the mri he had the other day it showed the tumor had grown slightly, by 4mm and that chemotherapy was the route they would like to take. And because they couldn’t get Morgan’s vomiting under control, he was still vomiting so many times a day. Which only subsided when he was on a heavy dose of steroids. but soon as these kept getting weaned off the vomiting came straight back. We were also told Morgan would be having surgery again today for a shunt, as he now has hydrocephalus and they plan to put a hickman line in ready for when they start chemotherapy. Hes also being put back on steroids.

I was devastated it had come to chemo, but a relive that there was a plan in place.

5 Responses so far.

  1. whatthedadsaid says:

    This must be a horrible feeling while the surgery is happening, i would be panicing and constantly on my mind with a million what if’s, the whole experiences is so though.

  2. What a truly emotional read, I have friends who have been through similar thank you for sharing such an emotional and personal part of your lives x

  3. ChelseaMamma says:

    It must have been a very difficult time for you, but sounds like he was in good hands. Sorry to hear that he needs chemo

  4. What an emotional rollercoaster that must have been, I can’t even begin to imagine how you must have felt. Thank you for sharing x

  5. I can’t even imagine what you all went through. That waiting while he was in theatre must have been awful. What a brave little man.

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