Throughout Masons first round of treatment, everything was a learning curve. We naturally discussed things that went well and other things that didn’t on our trips to and from the hospital. Besides the scheduled date for treatment, the rest of the time was very unpredictable and impactful. We would need to prepare to be able to drop whatever we were doing, arrange childcare for ‘big sister Paige’ and spend 3-4 days on the ward….
Round 2 - bald and isolated
The second round of chemo treatment came around as planned and we had it nailed, car packed, food/snacks/ready meal supplies sorted, childcare setup, clothes washed and even started bringing in additional home comforts to ease the time spent on the ward. Little things, like our child monitor, just allowed us to eat outside of Mason's room when he was sleeping, our own bedding/pillows, battery power bank for phones/iPad, shower gel/shampoo and portable fans for when it was boiling at night and you can only open a hospital window open 2 inches. They may seem trivial, but these were the things that we found ourselves saying…….’ahhhhh we could do with one of these right now’.
Returning to the ward, we came bearing an energetic one-year-old with a cheeky grin and a shiny bald noggin. Most of us know hair loss is a typical side effect, and his situation is no different. He started moulting around the two-week mark before it was all gone by week three. Of course, he looks different, but we have grown used to the look, and the fact that this is happening is evidence that the chemo is hard at work!
Mason continued with the same prescription as the first, taking just as long, and he handled it well, in fact, you wouldn’t have known he just had treatment if you saw him a day or two after.
It’s hard not to make comparisons to the first round. In fairness to him, he held back any signs of struggling, he wasn’t physically sick this time and kept going through the week, right up until this point at which we refer to ‘the crash zone’ which is day six. We saw a reoccurrence of the following symptoms again, temperature up, finding it hard to focus his vision, shaking when standing up etc…
Stop what your doing > clear your plans > car > hospital > 4 days.
Because of his raised temperature and the current covid situation we go straight into isolation. This particular stint was one of my worst because the multiple covid tests taken during our stay didn't return any results, and as such we couldn't come out of isolation. Four days with our little Tasmanian devil, constantly tangling his IV lines. Can I got get a cuppa - no, get some food - no.
Round 3 - tumour shrinkage
Same treatment, wasn’t sick, was a menace, ate and drank well and couldn’t wait to get home and run around the garden. Crashed on day 6 > neutrophils were 0.0, back on IV antibiotics again….we can see a pattern here, it's like groundhog day for the third time.
It was during this treatment period that Mason was scheduled in for another MRI and we received news that the chemo was working and there was evidence of tumour shrinkage. The team and we were so pleased to discover, it keeps us enthusiastic to continue. They did brief us that progress like this is not always linear, and although this chemo combination is effective now, continued use does not guarantee the same result. Our consultant's aim was to shrink the tumour to a size that is safe to remove through an operation. It’s worth mentioning, that Masons first MRI scan returned images of a tumour that was inoperable. It had grown into a large complex twisty shape around his abdomen and started expanding upward putting pressure on his organs. Our only chance was to trial chemotherapy to begin, in the hope, it would shrink.
Chemo round 4 - double crash sleepless grizzler
Round 4 of Masons Chemo treatment was the worst to date. Extremely taxing for him and consequently for us as parents. We felt hopeless the entire time.
Treatment continued normally as previous rounds did; nothing had changed or report here so we'll skip to the returning home part. We knew that he starts to wind down gradually over a few days until he hits his crash zone, but he was a lot grizzlier and more uncomfortable, he stopped wanting food and his sleep became disruptive which was breaking down his recovery cycle, requiring a lot more attention from us.
Saturday came around, his temperature was fine, but he was displaying all the signs and symptoms that he was exhausted; shaking, shivering, not able to stand, pale and weak vision. So, you know the score by now..... back to the ward as a precautionary measure. Based on experience we knew this was when his immune system was at its weakest. His temperature didn’t spike until later that evening, this is when antibiotics were given and consequently when the clock started. The following four nights on the ward were sleepless. Dad spent the first two nights, then we swapped over, and mum spent the last two.
Whilst awake, Mason spent most of his time crying, so much so that his throat became sore and hoarse, which probably attributed to him crying more. He exhausted his regular medication routine and became reliant on morphine for pain relief to support sleep times, it was such a hard cycle to break. The IV antibiotics pulled through by day four and Mason was in a reasonable position to bring home.
We have heard of others talk about the fourth round of chemo being a hard hitter but were yet to experience why. Oops spoke too soon.....first night back at our house and Mason cried until 4 am. Literally, nothing we could offer him would calm him enough to go to sleep, and we didn't have any morphine handy. In fact, he didn’t sleep at all and we both just surrendered by accepting it was a new day, made him another milk bottle and put Netflix on downstairs……. Ahh silence at last. Throughout the day he was grizzly but nothing unusual. He began to eat, and return to his normal sleeping pattern, slowly becoming more his playful cheeky self. The following night he had a 14hr kip which we’ll accept as an informal apology for the previous night.
The next day, catching up with family after being on the ward, and putting a food order together…..beep beep beep, temperature 38.3, you have got to be kidding me. Drive home, pack the car, mum stays at home with big sister and I venture in with Mase knowing it will be a minimum of a 2-night stay 'again' whilst on another course of antibiotics starting in isolation. ffs
It is infuriating at times how much of our family life can be disrupted by the attention Mason needs.
Round 4 has done us, total sleep deprivation we have spent the majority of the past 3 weeks on the ward with Mason, divided as a family. When we’re not here on the ward, we’re travelling back and forth from the hospital swapping over, washing his clothes, sheets, restocking his food supplies. It’s a full-time job.
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