We knew the first couple of weeks of Richard’s treatment would bring some chaos and unexpected issues to deal with, but it ended up being more dramatic than expected. As well as the pain in his back from the surgery, he developed pain in different areas of his body too, especially his calf and his chest. We went into RLI on Wednesday last week to get it checked out, and he was given the all-clear then sent home, but then the breathlessness he’d been struggling with all week took a nose-dive in the early hours of Friday morning and we ended up calling an ambulance to get him in. Scans later on in the day showed he had blood clots on both lungs and they also thought they saw other changes which they didn’t expect. Coupled with the increased pain in his spine, we spent a very bleak weekend expecting to hear more devastating news on Monday.
Thanks to incredible friends who took care of the kids, we were able to spend a lot of time together, and when more investigations happened on Monday, we were very surprised at the results. The site of the tumour actually looked better than they expected, with less, rather than more material than they thought they would see. Some of the changes and the extra pain turned out to be lung patches due to a chest infection from not being able to breathe deeply post-op and with the clots. This has now been treated through medication too. So nothing has actually changed, but it does mean we were able to exhale freely after thinking things were about to get much worse.
Richard was able to come home on Thursday, still in pain and struggling with breathlessness, but much better than he has been. The original chemo plan has now changed as the previous medication put him at high risk of blood clots, as does the myeloma, and so now he’s had some it’s not worth the risk of going back on them. The alternative course of chemo will be administered via IV twice a week, starting next week, and will have more severe side effects. We will get more information about what that will look like on Tuesday.
The rollercoaster of never knowing what’s going to happen next and medical plans being changed without warning is not a new thing for us, but handling it all with only one parent at home and one being the patient is. We’re so grateful for the people who are around us and the level of commitment they are giving to our family. The kids have had some great experiences in the middle of it all and are, as always, just going with the flow of whatever life throws at them next. They are incredible. In fact, one of them has just brought me up a cup of tea, increasing his incredibleness even more. This same one has also just learnt to make cupcakes at school this week. If that doesn’t sound like perfect timing, I don’t know what does.