If you've read the book, you'll probably want to know what happened next. The book covers our story up until February 2016; here's what happened next...
Luke's condition deteriorated quickly and he slept almost all day for several days, before going to Heaven. During his last few days we spent a lot of time cuddling him in bed, and he passed away peacefully at home. We are so grateful to God for our mighty son's life and to have had such an incredible 4 years together. God really spoke through his life; his message was LOVE and this love will continue to spread. This book has finished but the memory of Luke lives on in many people. I'm incredibly happy that I wrote Luke's story down and could share it with so many people, and the spirit will keep going. We will bring Sophie up with the knowledge of her special big brother.
We've enjoyed the fantastic weather we've had during this month, and have spent lots of time in the garden. Luke has felt pretty lethargic at times, but we've still managed a few day trips. As the month has progressed we've noticed more and more signs and symptoms, including headaches for which Luke now has regular pain relief medications.
This month has been all about getting out and about while we still can. We've enjoyed short breaks in the New Forest, Devon and at the Childrens' Hospice. Luke has been on a boat, miniature steam train, police car and been for a blue light ride in the front of a fire engine! Of course, lots of rides on his new trike, and waving at lots of animals and even stroking some as well. Towards the end of the month he has become increasingly tired, a sign that time is running short. We celebrated his 4th birthday, such a milestone.
This time, we had pretty disasterous news with Luke's scan. It showed serious deterioration as he has several new tumour nodules which can't be removed. We had been told we would get to this stage at some point, but it's still a shock nevertheless. We have a reinvigorated urgency of action to give Luke a lot of fun activities and make the most of what time he has. This month Luke drove a tractor on a farm, bottle-fed a lamb, saw lots and lots of animals, got into go-karts, went to Diggerland, spotted loads of nee-naws, fire engines, diggers and traffic jams - all a delight to him - and lots more. He's spent his downtime playing with his growing train set and playing with Sophie! He has received lots of cards from people all around the world - France, Germany, Hungary and Australia - which he loves opening and looking at the pictures, usually animals!
We are keeping busy with lots of visitors wanting to see Sophie. Luke loves talking about her. Luke and his friends enjoyed pancake day. We have been on lots of fab family walks, testing the all terrain capabilities of our new double buggy.
Luke's little sister Sophie was born and Luke welcomed her home the next day. He loves her so much and wants to share her with everyone!
These weeks were slightly worried times, as Luke had his quarterly MRI scan, the first since the August operation.
On the bottom of my heart I was calm and had positive feelings but I don't like waiting for the results which usually takes a few days or a week.
Luke was brilliant with the GA (general anaesthetic) and also his ENT (Ear Nose & Throat) consultant had a look in his airway, something that hasn't been managed for 2 years!
A few days later we received the news of the scan which was stable.
We had a lovely Christmas with God's presence. We talked about baby Jesus then Luke pointed to my tummy as he knows the baby is in there.
Luke wasn't keen to help with the decorating the Christmas tree, but he enjoyed taking them off the tree later, and was really upset when we took the tree outside.
December was so much fun and also he had his first haircut, which Daddy did, and he was calm and still for that. It helped that he was watching Fire engines on youtube - magic for little boys during their hair cuts, I think :)
Luke was enjoying pre-school but then became ill again.Almost every other month he gets a recurring tummy infection which can make him very unwell. So he had a two week course of antibiotics and a probiotic; but then he got ill with a sore throat and a temperature. So November didn't seems like it was his month!
As a result of being ill, the hospital had to postpone his MRI scan until next month.
Luke has managed to be in a good mood and we talked lots about the fact he is going to be a big brother. He has a special connection with my bump and enjoys stroking, kissing and talking with it.
We moved to a new house as we found our prevoius flat too small, especially with baby number 2 on its way. Luke has a new room and he enjoyed being in the new house. Finally we have a garden too!
James and I found out the gender of the baby but we decided not to tell anyone.
We had very busy days as we prepared for the release of the book My Mighty Son and organising the book launch.
But of course nothing ends up going entirely smoothly - we ended up in hospital for three days with Luke as he had very high temperature and infection.
But after that we were ready for our important evening. We had an amazing night with family and friends and people from church.
Luke was amazing!
Time for Luke to start pre-school again, and he was happy to go back.
Luke also enjoys riding a horse called Bello. Whenever we can go, we are jumping in the car and going to see him. We also had fun at Diggerland.
We had conflicting information from different doctors about the treatment options for this latest tumour. Then we had a meeting with his neurosurgeon who said he can remove the tumour relatively easily. He also knew how important it was for us to be out of hospital as quickly as possible, and he was really confident to say that if the operation goes well, we would be able to leave after two nights.
Two days after the meeting, Luke had the operation. It was the shortest tumour excission operaiton and after 'just' 6 hours they had finished. Luke pulled round very quicly and yes we were able to go home a couple of days later.
He also had a post-op MRI scan to see if he removed the whole tumour and all was fine.
We were happy to be home and thanked God for His timing.
And then at the end of the month - we finally made it! We got away on a little summer holiday to Cornwall.
Luke had a nasty ear infection and we had to spend many days in Bristol Children's Hospital. Then after lots of tests we discovered a few new conditions that Luke has, so he needed to start new medication for this.
We had a few really hot days in hospital as well as outside. We could hardly go out. Then I had to go back to Bath for my 12 weeks ultrasound scan; by coincedence this was the same day Luke had his MRI scan. James couldn't come with me as one of us needed to be with Luke in hospital but Mum was there for me.
The scan went well and the baby was very active. After my scan I tried to call James, but the signal was pretty poor. A little later we could hold each other but we passed on the bad news about Luke's scan :(
One day, I sat down and thought about the future, even though it’s hard, but I really felt this time would be a good time to have a baby. An engine to keep us going. It was difficult to talk about it in the beginning as of course, Luke is my baby but I had questions around me: What if I don’t want a baby in the future or how long we could wait for another?
So I discussed this to James, and he needed time to think and pray about it. And this is an example I can give of how much God is using Luke in my life. This year on Mothering Sunday Luke gave me a picture - here's a photo of it.
I was shocked. My question straight away to James was: "Can you see what I’m seeing?" It looks like an ultrasound scan. ( head, tummy, arm, leg). Is this the answer to your prayer, James?
And here we are. Luke wants us to continue to be happy and he already said that is going to be a little girl. Well, we will see if he’s right in January :)