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.
Lisa-Jayne Mutton says
You guys are AMAZING. You are an inspiration to us all. It must be such an amazing feeling to have it behind you. Thanks for sharing. xo
Jerusha says
Thanks Lisa-Jayne. It is definitely an amazing feeling. At first it was just relief followed by exhaustion but now it feels brilliant! Xx
Tina beard says
Wow what a journey and what a trial. Thank you for sharing your thoughts. Ethan is one special boy I’m so excites for the future for him and you all as a family x
Jerusha says
Thanks for reading and commenting Tina. It is exciting to know that he has a great future ahead of him. He has come out so determined that I’m sure he will make great things happen. How are you and your family going? Xx
Portia Caballero says
That was a beautiful update! So happy that he is cured and you have your lovely boy home with you to get back to normal life. Although I’m sure things will never be the same. Seeing a councilor might even help with some of the post trauma.You are all inspirational !
Jerusha says
Thank you Portia. It is good to have Ethan home and to not have to travel back and forth to the hospital anymore. We are all going really well now. I hope your family is well too. Xx
Dorian Black says
I am so happy for all of you! What an absolute ordeal, but in true Howes fashion you passed with flying colours. I am in awe of you.
Lots of love to all of you. Luke’s grade 3 teacher Dorian Black XXX
Jerusha says
Thanks Dorian. We never really feel like anyone should be in awe of us – you just do what you have to do to survive! We appreciate all the love and support though. It has definitely helped us through. Xx
Caroline Mc says
So happy for your brave and remarkable boy, Ethan, and for you all. Sending love and cheers your way!!
Jerusha says
Thank you! All the love and cheers has been great. Ethan has loved the comments and well wishes from people all over the globe. It has helped him to know that so many people have been praying him on. Xx
Tammy Van Orden says
Thanks for taking the time to make this post. You guys battled that trial with such grace. We have been strengthened by your faith and inspired by the love that is so evident in your family. You’re the best and we are so happy to have you as examples to look up to in our lives. We wish you all the best in the adventures that await you!
Jerusha says
Oh Tammy. We love and miss you guys! Thanks for your comment and all you have done even though you are on the other side of the globe. You are always awesome. We don’t feel like we are brilliant examples in anyway, we just did what we had to do to get through the trial presented. We are certainly so grateful to have come out the other end so well. We are looking forward to the adventures ahead of us too! Xx
Claire Lincoln says
Hey Jerusha, I promised myself I would stay updated with your blog ever since I met you and the family at camp a while back now. The family are thrilled when I let them know the updates! I’m a bit late reading this one just because I had my HSC Trials and it has been a very hectic month or so!
I am so glad to hear that Ethan is doing well and that he is in remission! I remember that feeling walking out of the hospital for the last time knowing you were in the clear!
Only with time will that feeling go away of ‘will it come back’ sadly to say, after 11 years I still have that feeling about myself!
I am ecstatic to here your progress and I would love to meet up with you and the family again some time!
I have also been meaning to text you although my phone restarted and I lost all my contacts so I no longer have your number 🙁
Tell Ethan I said hi 🙂
Thanks for sharing your story! It’s great to follow along the journey, I can nearly remember mine looking back on it now, hopefully Ethan finds he can only remember the good parts like my brain has decided to do, it’s much better that way!
Hope everything is still well xx
Jessica says
I was impressed with you as soon as I heard you speak while staying at your house. I admired the calmness and kindness you both showed. All your children were a delight at the dinner table! I have since then retold the joke by Ethan to a few adults “can a man give birth to children?” “No they can’t!” ” yes they can because Bill Shorten is in labor”. We all agreed this was the best joke coming from a seven year old. What I didn’t know was the incredible journey you’d family has been through. I’ve read them all in one go. I’m waiting for more!
Jerusha says
Thanks Jessica! The kids LOVED having you visit. They were really sad when you went home. Feel free to come again any time. Xx