I know it’s been a few months now but I thought I would write about Ethan’s last chemo for those of you who don’t live close and still want to know how it all ended!
Of course everyone was excited when the day arrived for Ethan’s last chemo. I gave Blaise the day off school so he could come and keep Ethan company. Vienna came too but she opted to go to the hospital child care centre as opposed to stick with us in the oncology clinic. We ended up having a long wait and so we got lunch from the hospital cafe just as the chemo started (as opposed to our planned outing afterwards) which was definitely a good thing. For some reason this last round of chemo really hit him hard. He was feeling sick before we even left the hospital (it normally took an hour or two to really set in), he threw up a lot more over the coming days and it took him quite a while to bounce back.
A week after that chemo we went in for his regular weekly blood test. Once again his platelets (blood cells whose funtion is to stop bleeding) hit rock bottom. He was diagnosed with a rare liver disease (caused by the chemo) where his body destroyed platelets instead of producing them. We were told it was no big deal in the long run as the liver would heal itself and it showed up at the end of chemo (he would have had more trouble if he still had weeks or months left to go). What it meant was we ended up having to go back to the hospital every 2nd day for a platelet transfusion & if he had a bleeding nose we had to treat it like an emergency and head straight for the hospital (when he did have bleeding noses they lasted for over an hour as without platelets his body didn’t have the ability to stop the bleeding). Each time we went we had a blood test to see his levels. After a transfusion you would expect the levels to go up by at least 100 however Ethan’s were going up by 2. So we went every 2nd day, including Anzac Day, Easter Saturday and the Monday public holiday until eventually the body healed itself and the platelts sky rocketed again. We were very happy when this happened! We then got the approval to go visit my sister in Newcastle for a couple of days – we just had to report to hospital up there if he had any bleeding which he didn’t. It was so good to have a little escape after so many hospital trips.
3 weeks after his last chemo he had his important CT scan. Although he had lots of tests done this was the big one which would show if the cancer was all gone or not. Of course we were exstatic to have the official all clear. I can’t really put words to how it felt for it to be over but as you can imagine we were over joyed.
On the 22nd of May Ethan had his central line taken out. This was the thing that meant the most to Ethan. Although wen he found out he had to have a canular every 3 months for his CT scans he asked if he could keep it in for the next 5 years! Almost 9 months to the day of having his line put in he had it out again. Of course the fasting is always the hardest thing although this time round was definitely Ethan’s best. The anethetist came and spoke to us before the proceedure and then asked if we had any questions. Ethan said “yes, can you please order me a pizza?” We promised we we would when he woke up. Off we went to the room where he climbed on the bed and was put to sleep. Once again I had to give him a kiss and walk away trusting him into the hands of our surgeon. It was quicker than expected and before we knew it we were sitting by his side as he slept on after the anesthetic. He looked so peaceful and relaxed. For a long time I couldn’t detect a single movement other than his breath. Then all of a sudden he opened his eyes and instantly asked “Did you order my pizza?” I can’t tell you all how much this boy makes me laugh. You aren’t meant to eat after anesthetic. You are meant to wait and see how your body responds. Well we have learned with Ethan that when he wakes up he is hungry. Really hungry. He ate and ate and ate. Seriously. He ate a lot of food (half a can of pringles, a box of shapes, a dixie cup, calamari rings, hot chips, half of my fish, brownie and banana bread. The cafe got good business from us that night! Then he just up and walked out the door. Just thinking about it now as I type I am a little teary as I recall how good it felt to walk out that night knowing we were done. Sure we’ve been back for different appointments since but the big stuff is behind us now.
In a way it’s hard to imagine that it was only 9 months and in other ways that 9 months felt like a life time. I feel like everything in life was either pre – diagnosis or during his illness. I constantly find myself saying somethign along the lines of “We haven’t done this since before Ethan was diagnosed.” Curing cancer consumed every aspect of our lives. So much has changed that will never be the same. I overheard Vienna playing doctors and nurses with her cousins. There were no complaints of headaches, tummy aches or broken arms. Every cousin picked a different form of cancer to be cured of. At the time I laughed but the reality is far from funny as cancer is way too prelavent in our society.
Vienna needed to go to the doctors today and she totally freaked out and went hysterical when I told her. I was given the inspiration to know what her concern was and was then able to assure her she didn’t have cancer and wouldn’t be going to hospital or having medicine that made her sick. Once I told her the GP has a jar of lollipops she was only too happy to go. Funnily enough she had forgotten about the lollipops once we were there and didn’t even get one!
Ethan is our miracle boy. Not a day goes by where I don’t feel complete gratitude for his healing. I would be lying if I said I didn’t have concerns about side effects and what aspects of his future life will be affected by all of the radiation and medicine. I have to keep reminding myself that he is a miracle boy and we can fight anything that comes.
Last week Ethan had a 24 hour vomiting bug. It came so out of the blue. He handled it brilliantly as he is a master at using the vomit bags and wiping his mouth off etc. He doesn’t cry, complain or get upset. He is used to being sick so he just takes it in his stride like it’s any other day. That night I confessed to Luke that that day I had the irrational thoughts and fears that what if this meant the cancer was coming back? Vomiting is one of the symptoms for kidney tumours. I felt silly in my confession until Luke told me he had had the same thought. I have hope that one day those thoughts will leave my mind and that we won’t live life with that fear always in the back of our minds. Now we are celebrating life and trying to make many fun memories of good times together. Family comes first and I try to plan our days together so that when I put my children to bed at night they can go to sleep knowing that they were my number one priority that day.