No I didn't take the weekend off. I started this blog last night but things happen. I thought I might be able to relax at home and blog at a leisurely pace yesterday. But we are still at the hospital, probably for another few days. We were told Saturday that we would be able to head off. In fact, we could have packed up and headed home Saturday but we decided to hang around one more night. Before we got the all clear today, the doctor had a look at Oliver's mouth and in her own words 'it was a mess'. We needed to stay in for a few more days until it got better and so that the boy, and mum and dad, could get some sleep. Our little man can't take a trick.
Chemotherapy attacks fast growing cells such as cancer cells - brilliant. Unfortunately, there are other fast growing cells in our bodies that also suffer. For instance, your hair, so Oliver will soon lose it all. Your bone marrow, so Oliver will experience neutropenic phases where his white blood cell count will get so low - sometimes to zero - that he will be unable to go out anywhere in case he gets something that his body just can't fight. The mucosa that line the gastrointestinal tract - so from his little mouth down through to his tummy and further these will all become inflamed and ulcerated, making it painful to swallow mummy's breastmilk, painful to suck his little fingers, and makes him feel nauseas. He is on a slow morphine drip to keep the pain at bay and is being fed through a nasogastric tube down his nose into his tummy. So mum is expressing as much as she can and he is also on a breastmilk substitute. He slept OK last night, thanks to the morphine and a continuous flow of food into his tummy with a 'bolus' every couple of hours to fill him right up.
So 2 weeks ago, Monday 7th July, we were back in the hospital. Attempts were made to get blood from him but this was impossible due to our little man's chubbiness not allowing them to find a vein. I left Karli with our fiercely objectionable little man and had to head to work. I was quickly back after a call from Karli that Oliver was about to have another general anaesthetic to have 3 lymph nodes removed to be biopsied. Although fairly straight forward, we were a little concerned as he had stopped breathing and turned blue during his first GA. He also had his blood removed to be tested whilst he was under anaesthetic and had a drip put in which would be a constant appendage for the next few days.
Tuesday saw Oliver injected with radioactive dye for a bone scan to see if there were other areas in his skeleton affected by the cancer, as they had already seen some dodgy spots on his shoulder blades during his CT scan. As a result, for the next 24 hours we were changing him with gloves and placing his nappies in hazardous materials bags. He also had more blood removed for other tests. That afternoon we had a meeting with the consultant that our social worker and Oncological Liaison Officer sat in on. It was starting to get serious. There were 3 conditions that they were looking at, none of them good.
Wednesday we spent in the room waiting to see the consultant to get some results. At 4.30 we saw her and there was still no news. I think I recall them saying that at least one of the possible culprits had been ruled out, but we were still playing a waiting game.
Thursday was more waiting to see the consultant. They had results. Oliver had anaplastic large cell lymphoma. I still haven't found the space to be able to sit down and research anything about it yet, but we were given a bit of reading material. In my heart I had hoped that they were going to come in and tell us he had a weird reaction to the flu virus, that he was going home tomorrow and would be fine. No such luck. I had spent the week worrying that we were taking up a bed in the ward unnecessarily, using up nurses time and ward resources. But suddenly, we were in the only place he should be.
Friday was a blur. Heart ECG to make sure it was OK and to get a 'before' picture as it could be affected by his chemo. Then off to x-ray to take a picture of his chest for the surgeons who would work on him later that evening. Into the ambulance to go to Charlie's (an adult hospital) where they were cranking up their old PET scanner to get a picture of the active growth areas in Oliver's body. More radioactive dye injected. 3 hours later we were back at PMH to prepare him for surgery to have an infuser port inserted. A little button would sit under his skin attached to his rib cage with a catheter flowing pretty much into his heart. It would mean a whole lot less pain and agony to get blood and give anything intravenously. Another GA and at the same time they would do a lumbar puncture to check the fluid around his brain and spinal cord and to start his chemo.
The surgeon expected a routine 1-1.5 hour procedure. As the hours stretched on Karli and I became increasingly concerned and stressed. What was happening to our little boy on the operating table? The surgeon came out and saw us to give us an update early on in the pice, but as staff left for the evening we sat in the corridor trying not to think the worst. After 4 hours the surgeon came out and told us what was happening. The surgery was over, the port was in, but they did have to place it on the left hand side and it didn't run perfectly into the spot they would normally like it to. but it was there and that's all that mattered to us. We stopped back in at x-ray on our way back to the ward so they could double check the placement of the catheter. Back on the ward Oliver finished off his first dose of chemo.
We spent Saturday getting our heads around his chemotherapy treatment protocol and looking after our little family that was suddenly going through some daunting changes.
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