Sorry I didn't post anything yesterday - simply too tired, and a bit all over the place with my thoughts. Yesterday was another relatively 'normal' day - Luke managed to pull out his NG tube again - this time just by rubbing his face on Letitia's shoulder! Fortunately a community nurse was due round shortly afterwards to take blood for testing, so put a new tube in without Letitia having to take Luke anywhere.
The plan is for Luke to have his Hickman line put back in on Monday (surgery required for this). Then, round two of chemo will start on Tuesday. And at some point after the second round of chemo and before the third, an MRI scan will be done to actually see what the tumour now looks like. After a month or so without any treatment while the histology was being investigated, we don't know if or by how much it grew before chemo started.
The problem with the plan is that Luke's blood count, specifically his neutrophils (helpful little variety of white blood cell which helps you fight infection). The normal count is '2'. To do the chemotherapy the minimum they want to see is '1'. To do the surgery on Monday the minimum they want to see is '0.5'. On Tuesday Luke had '0.15' and yesterday '0.11' - it's not only too low for what they need to do on Monday, but is going backwards!
We got the results from our local hospital towards the end of the day on Friday. Between a message being left for us, and our hospital calling Addenbrooke's, and Letitia dealing with Luke and what he needed, we didn't manage to speak to Addenbrooke's after the results were known. We have been asked to have Luke there at 7.30 on Monday morning, which will mean leaving home at around 6am, and for surgery in the morning he will not be able to have breakfast. We don't necessarily want to go through that if Luke isn't going to be able to have surgery, so fortunately phoned Addenbrooke's today to see how the land lies. That is how we know the minimum neutrophils needed for surgery and for chemotherapy. And, given Luke's are so low (and that they can't transfuse white blood cells or neutrophils) we were asked to get up to the Lister today and tomorrow for GSF injections, which may help encourage the neutrophil level back up. They will also do another blood count tomorrow afternoon, so we can see if surgery is likely or not. All I keep thinking is its a good job we bothered to ask, as if these injections make the difference between being able to have the surgery on Monday and not, then it avoids another delay in treatment. And I just want it to over with. If the hickman line surgery is delayed, or the second round of chemo is delayed, then we may be late with the next MRI scan, so wont know exactly what is going on in his little body, and I can't help thinking that the longer between treatment the more chance there is for the cancer to be regrouping and causing trouble again.
On top of this I am still working my way through a dilemma. I have a fantastic opportunity with work on Monday and Tuesday to get some experience in an area which I want to take my career in the future, and that I wont get many chances for. But it means staying away from home (and hence Luke and Letitia) tomorrow night and Monday night. I can't decide if, with what may be happening at the hospital with Luke, I can take being away. But there is a reasonable chance that the planned surgery wont happen. And, for the next year, when will there be a good time? Letitia is happy for me to take the opportunity - I am just trying to work out if I can do it. Nuts, I know.
We had a wedding to go to today. Good friends of our tied the know in the next town, and we managed to get to the church service, even though we had already backed out of the wedding breakfast and reception. My in-laws kindly came and baby sat while we went our for a couple of hours. It was great to be at the service, but for some reason it was really tough - to be around friends who wish us well, but don't really know what to say, and trying to put Luke's illness out of our minds for even a short time and enjoy something special. While it was great so see some friends, even if we didn't stick around much after the service, I don't think we managed to put things out of our minds. Maybe that will come with time, but neither of us has managed it at all yet.
Anyway - enough rambling for tonight. I have a stack of work to do. They are still be extremely understanding and flexible, but I am finding my productivity is still much lower than normal, so I am having to work longer hours just to do the basics. I need to get on top of it soon - just getting more an more tired!
But - I am happier this evening than yesterday. Luke has had a great day, I got to have some one on one time with him this morning - we went for a walk and to the park. He had time with his grandparents this afternoon, and Letitia and I spent some nice time playing with him and giving him dinner this evening. He is really happy as long as the pain is under control - and is so close to crawling. He's on his hands and knees - just needs to work out which to move and in what order! Bless him - he is amazing.
In a perfect world, no child would be sick and all would grow to be healthy adults.
ReplyDeleteYour post is heartfelt and clearly shows the turmoil in the life of parents caring for a sick child. It is sometimes good therapy to be able to share your thoughts with strangers and feel support.
I wish I could do more than just post a comment. Thank you for sharing this post about your little Luke. I hope he is able to make a full recovery soon. Your post has touched the heart of a stranger.
Ross Mannell (Australia)