As you may well know, the last few weeks have been a bit of a test of our faith, in more ways than one. We know God has never promised to respond to our prayers with the answers we specifically ask for, and we know His will extends far beyond anything we can foresee, comprehend or imagine, but we have sometimes struggled to incorporate that knowledge with our absolutely overwhelming desire to see our darling Edward healthy, with fewer hiccups along the way.
Unfortunately, Ned had a slow recovery from the last round of chemotherapy that was administered over 2 weeks ago, such that a specific test has been sent to Sydney to determine if he’s lacking a particular enzyme that would explain his lag. His young body and bone marrow have had a bit of a battering from the large doses of intensive chemo agents scheduled in the high-risk protocol that he’s following, and thus his neutrophils (infection-fighting cells) haven’t bounced back enough to proceed with the next round.
In some ways, days out of hospital, without having to administer medications and deal with nasty side effects, are quite pleasant and enjoyable. But the flip side is that the leukaemia isn’t being treated, and that’s our ultimate concern.
Unfortunately, yesterday, after thankfully discovering in the morning that his neutrophils had finally risen to an adequate level to re-start chemo, we received most unwelcome news that the routine echocardiogram (heart scan to record baseline heart function) that morning had alarmingly discovered a sizeable thrombus (clot) in the right atrium of his heart. Ned had to return to hospital immediately for another scan to determine more details about the clot and its exact location. Needless to say, we watched him like a hawk all of last night.
Thromboemboli, or clots, in blood vessels often present a management dilemma, which is more amplified in a small child on chemotherapy. The thing is, clots are serious because they can be quite unstable, particularly in the heart, and may cause significant damage by blocking a blood supply or throwing off smaller blood clots that get lodged in the lungs (otherwise called a pulmonary embolus). The treatment is an anti-coagulant (a blood-thinning drug), which, if overdone, can cause the other extreme of excessive blood thinning and bleeding.
In a child as young as Ned, who is already on chemotherapy and frequently requires platelet infusions due to his fluctuating platelet levels, starting an anti-coagulant is quite a risky venture because of their heightened potential to unexpectedly and surreptitiously bleed, particularly in their brains – arguably a greater risk than leaving the clot in situ. This debate is what our oncologist, a local cardiologist, and a few Melbourne specialists are focusing on currently. The general consensus after today is that leaving the clot is the less dangerous option because, from the scans, it appears to be essentially stable.
What caused this, you may wonder? Unluckily, the catheter portion of Ned’s Port-a-cath (the sub-cutaneous valve under his right arm) has advanced itself 4cm into the right atrium (upper chamber) of his heart, and the tip of it seems to have scratched the heart wall over time, which has caused the thrombus to develop.
This catheter misplacement means that we can’t use it in its current state for chemotherapy administration, which means that Ned must have unexpected surgery early tomorrow morning to withdraw the catheter from its current location in his heart, without mobilising the clot itself. If that fails, then he must have the whole Port-a-cath removed and a new one inserted – akin to the surgery he had in week 6 of treatment (which I’ve posted about in an earlier blog entry), which has a fairly prolonged recovery. After surgery tomorrow, we’ll need to get back into chemo immediately to prevent further compromise to his leukaemia treatment.
So this is the next challenge. I’ll be taking Ned in tomorrow morning for his surgery, since Seth and Lucy will be at school. Please uphold us in your thoughts and prayers, since we’re all rather anxious and emotionally exhausted at the moment. All of your encouragement, support and ongoing messages have been so appreciated!