I have been really poor at making time to do the blog lately - I think this is the first post for three weeks.
Firstly, an update on Luke. He is doing fantastically well. He has started properly crawling, and is trying to stand (with limited success). He was always quite vocal, but has really found his voice - even if the only words so far are Mumma and Dadda! And he certainly knows how to tell us what he wants - usually by pointing. And, more importantly than anything, he is full of smiles and laughter. I find that during the week, when I dont see very much of Luke because of work, I can get quite worried about things. At the weekend, I some get to spend some real quality time with him, everything just seems somehow much better. That isn't to downplay how much we have to go through in the coming months, but Luke is made of tougher stuff than me, and seeing how he is handling everything just makes it easier for me.
So, what do we have to be nervous about? Luke was due to have the fourth round of chemo last week. My wife took him into the hospital on Tuesday morning, but we weren't too hopeful that his blood count would be high enough. He had to have an echocardiogram anyway, which was fine, but ultimately the chemo didnt happen. While at the hospital though, my wife had a few words with out consultant, who mentioned that there are a couple of hurdles to clear with the issue of radiotherapy.
I wrote before about us possibly being referred to Florida for proton radiotherapy in the new year. Assuming Luke's tumour has continued to shrink, after the fourth round of chemo is finished, an MRI will be done, and as long as the results are as hoped, surgery to cut the rest of the tumour out will happen. This will probably take us to the end of January or early February. As soon as surgery is done, we were told that proton radiotherapy treatment would be required, and that would mean going to Florida, as that is the only place with the right machine to deliver this to a tumour in the spine, and which is able to do general anaesthetic on a baby. That would be anywhere from three to eight weeks. The reason the radiotherapy is required, as we understand it, is because of the location of the tumour. Being right next to the spinal chord, no margin of error exists to ensure every cancerous cell is removed. Radiotherapy will ensure that all of the cancer that the tumour site is gone. The chemotherapy is helping with that, but is more to ensure that any cancerous cells floating around Luke's body are mopped up. As I said - that is entirely as we understand it, and probably isn't entirely technically correct, but hopefully you get the point.
Last Tuesday, our consultant said there were a couple of hurdles with the radiotherapy. We expected that funding may be an issue. The consultant is fairly confident that the NHS will pay - we really hope it does, but if not, and this is the treatment that is needed, then just name the price and we'll find a way. But, it hasn't even got that far yet. Discussions are ongoing about whether the particular type of radiotherapy can work given where the tumour is; and over whether his particular cancer will respond to that radiotherapy. Because it has never been fully classified, it is being treated as much on the basis of what it isn't as what it specifically is. The team at the hospital is continuing to have discussions about it.
When we were given this news, it felt like a big kick in the nuts, to be honest. We felt like we were making really good progress, and for the first time, had the plan that would see us through to a healthy, cured Luke. Now that is being unpicked, and we don't really know what is happening again. Because we don't know exactly what the cancer is, we have never been given a treatment plan. Most other parents on the ward have a plan setting out x number of chemo sessions, surgery at whatever point, then more x number more sessions of chemo etc. We have never had that plan, it has been more a case of suck it and see. We understand that, and have the ultimate faith in our consultant and his team, because so far, everything they have done has made Luke get better. But there is a long way to go.
Several people have criticised the hospital for giving us this information without having the final answer or giving us an alternative. Only a couple of months ago, I was expressing my frustration at not having enough information about what was happening, why things were not 100% clear, and was asking for more information, even if it was just to understand what conversations were happening and why. I will admit that I could have done without knowing these questions were in the air for the last week or so, but if there are question marks over things, I want to know. It is only right that everything is considered to the n'th degree - there are risks and consequences of all treatment options, and at the end of the day, I want to know that all aspects have been thoroughly considered, and that we are only putting Luke through things which are likely to help make him better.
So, tomorrow we should be going in to start round four. And we should have some time with the consultant to properly discuss what the current thinking is with the treatment plan, and understand what that means. There are a million follow up questions that virtually every element leads to, none of which I want to dwell on too much until the meeting. I had a big emotional wobble one evening last week, but I am focusing on staying positive - that is what Letitia and Luke need, and worrying about the worst case scenario the whole time gets becomes very draining.
Hopefully after the next day or two I'll have some good news to post.
