All done! Today Ethan’s surgery went very well. There were no glitches, surprises or slip ups. Our surgeon and oncologist are both very pleased with the results, as are we.
So here is the run down of the surgery (well our understanding and knowledge of it. I’m trying to keep up with all the medical terms and things that are explained to me. Hopefully my nurse friends won’t tell me I got something completely wrong):
Ethan only lost a small slice of the right kidney. When they went into the left kidney there was only a small part that didn’t have tumours. They could have gone in and tried to do intricate slicing and dicing but after consulting with the oncologist they decided to take the entire left kidney and adrenal gland out. That will be better for Ethan long term as it eliminates future complications of tiny pieces being left behind and going into other organs.
Some could question why we are happy with the outcome when he still lost a whole kidney and adrenal gland. In my mind there are several reasons why we had a big success today:
- The right adrenal gland is working 100% so he won’t need hormone treatment.
- If the right kidney keeps functioning at 100% which it should then he won’t need dialysis or a transplant. These are two things that were a high possibility after looking at the initial scan and the percentage of kidneys they had to work with back then.
- All threat to the aorta and spleen have been removed. All other organs were not affected. By removing the left kidney any possible future threats were removed.
- There was no internal urine leaks which we were told are common in kidney operations. We were warned he could have stints put into his bladder for the duration of his recovery. Once again this is common but they didn’t need to do this.
- The epidural worked 100%. He has got full pain relief without any complications to the spine or legs.
- Our surgeon was able to do the operation with one big cut across the abdomen as opposed to going down the torso. This is supposedly easier to recover from.
Pathology will now be testing the removed left kidney and tumours to make sure it was all on the inside of the kidney without any being on the outside as well.
We are grateful on so many levels. 3 months of chemo might not have saved the left kidney but it reduced the tumour in the right massively so he is only missing a small percentage of that. The tumours in the left kidney shrunk more than 50% which made it easier to remove and lessened the risks of erupting the tumour and disturbing the other organs.
When Ethan woke up he had a hoarse cry and a croaky voice. He has a tube that goes through his nose and down his throat to extract all the bile and fluid from the stomach. It sucks it out into a bag. This was upsetting and bothering him. The nurse said it won’t bother him as much over time. I was so grateful when he went back to sleep after only 5 mins. It was pretty sad to see him like that. Mercifully he was still asleep when I left just before 6 pm. He woke up several times but only for a few moments. He didn’t try to talk at all he would just nod at the things we would say to him.
He has a canular in each hand/wrist on top of the nose tube and catheter. It is definitely better for him to be asleep right now!
That’s about it! Stop here if you just want the results from the surgery itself, keep reading if you want to hear about our day.
When I got out of the shower at 5:40 this morning I heard the boys talking. I went into their room and they were cuddled together on Ethan’s bed. When I asked them why they were up so early Blaise told me that they were having special brother time. A heart melting moment for me.
Ethan said some really cute things this morning. He certainly was expecting everything he just went through. We didn’t want him to be anxious or stressed. He just knew that he was going to go to sleep for the tumours to be taken out. Just before the anesthetic took effect he waved to his tummy and said “bye bye tumours. Ill never see you again. You naughty naughty tumours. ” he had the 4 medical people laughing. That’s my boy – fighting this with spunk and Witt.
Luke and I had planned to stay in the waiting room but some friends and then the anesthetist told us to go for a walk. We were told to go eat and relax so we were prepared for assisting Ethan when he awoke. I don’t think we got to the relax part but we did go out for an hour. Luke’s license expires tomorrow so we drove round the corner to Parramatta and got that renewed. We stopped in at San Churros for a morning snack and mini birthday celebration for Luke (his birthday is tomorrow). We then came straight back to make sure we were here in time. Then we waited, and waited and waited until we got the call. Actually we got a courtesy call to tell us it was going really well but would still take another hour. Then 20 mins later the surgeon called us and asked us to come to the recovery waiting area.
The surgeon then gave us all the news I wrote about above. He also told us that Ethan will be really angry for the next few days as a result of drugs and pain. After that it should get better.
We sat next to Ethan in the surgery recovery room for a few hours. They were ready to send him to the surgical ward after an hour. A bed had been arranged. We always go with whatever we are told to do without pushing or asking for much. Today I decided to be a little bold in a friendly way. We had been talking to our nurse throughout the hour and got along really well with her. She is a mother of two boys similar in age to ours. One of her boys has had to have surgery there at Westmead before, so on top of being an experienced nurse she understands the emotions and feelings of what the mother goes through. So I asked her if she knew how many people we would be sharing a room with. I also asked if there was any way we could swap to an electric bed. Normally whatever bed you get when you arrive you keep for the duration of your stay. With my back and rib problems I can’t lift the manual beds up and down myself so we have to keep pressing the nurses button or I tell Ethan to just leave it and deal with it so we don’t disturb the nurses. She called the ward and was told that we were in a shared room of 6 and that no we couldn’t have a different bed. I asked her if they knew we were an oncology patient and told her about how in our other shared rooms in the non oncology ward the other patients have lots of people visiting who were coughing/sneezing etc. We are always told to keep him away from that and then we are surrounded by it in the hospital. So she was very kind and told us she would give it another go. She called the ward and told them that Ethan had had a huge surgery (which is true) and that as an oncology patient a 6 bed room wasn’t appropriate. She explained that the nurse on duty would have to be lifting the bed up and down every time during the mothers day shift. She was told they would send up an electric bed for Ethan and that if we could wait an extra 2 hours there was a single room being vacated and just needed to be cleaned. As the recovery room wasn’t overly busy the nurse happily agreed to take care of us for the extra two hours. We weren’t pushy, demanding or mean. We had built up a friendly rapport and just stated the facts. So we are in a single room with an automatic bed in the surgical ward!!! Very happy about that. That is amazing! We are stoked!! Can you tell? All thanks goes to an amazing nurse who knows both sides of the coin. She was wonderful. She even told me I should stick up for Ethan more. She said the parent has to fight for their child or no one else will. Amen.
It was nice to see the other children tonight. Sam came over to our place at 6:30 to look after them and take them to school. A lovely mum from school who also has a daughter Vienna’s age took Vienna for the day. They have played together multiple times and get along well. Then my mum got them from school at 3 and had them for the afternoon. When I got home we were all happy to see each other again. Blaise wanted to hear about everything as he had been worried about Ethan throughout the day. Vienna was happy to tell me about playing with her friend and going out for a milk shake and donut.
Everyone was a wonderful help to have it all go so smoothly. To top it off I had a hot meal on my door step when I got home from a lovely lady from my church. I was starving and it was delicious!
Thank you all so much for the texts, emails, thoughts, prayer, love light and positive energy you’ve been sending us. You’ve all been amazing. Yesterday I was starting to feel nervous about leaving my son in the hands of a surgeon without being there next to him but then I was blessed with peace. I can honestly say I felt a peace that it would go well and that has helped sustain Luke and I today. I know our prayers have been answered. I feel immensely grateful right now.
I was asked today how I could feel grateful for anything when my son has cancer. The answer isn’t simple. Pain and suffering are never easy to understand or bear. The truth of the matter is we learn and grow through our tests and trials. If everything were easy we would never change, we would never learn and we would never become better people. Ultimately I feel that life is about learning, growing and becoming the best person we can be. Yes we want to have joy in the journey. No we don’t want to suffer. No I don’t want my son to suffer. Given the choice of course I would never in a million years choose this for him. If I could take it on me and have the cancer instead I would. However I can’t take the cancer away from Ethan and I can’t change the trial which has been given to us. Accepting this challenge and facing it head on is what helps us get through. This is how we cope and keep going. There are so many things I hoped for and prayed for leading up to the surgery today. I have hope. I have faith. I feel that God has answered my prayers and your prayers and well wishes. That is why I can and do feel grateful.
Vickie Jacobsen says
Jerusha, we are so glad things went well today for Ethan. You have all been in our thoughts and prayers. Love to you all. X
Kathryn says
You are all amazing! And WE LOVE YOU!
Mari Ann Thompson Felix says
We are so happy to hear it all went well. We are touched and inspired by your testimony and faith. Our thoughts and prayers are with you.
Love,
The Isaac and Mari Ann (Thompson) Felix.
Shalee (Dubravac) Jenkins says
I am so happy the surgery went well. You are an amazing mom with incredible faith! Thank you for sharing your experiences! Merry Christmas!
Shalee
Monica chalke says
Glad to hear all went very well. Having one kidney is not bad. My Harrison only has one kidney is 6ft 2inches and is an excellent basketball player and athlete. It hasn’t stopped him from doing much. Wishing Ethan a speedy recovery. Glad to hear that Blaise is a wonderful brother and has compassion and concern for him.
Love
Monica
Shane Nethercott says
So relieved to hear that all went well yesterday. We have been following Ethan’s journey and have been inspired by his strength and by the strength of both of you as his parents. What a miracle we have all witnessed. You guys are such a beautiful family, all the best at this Christmas time. Hoping that you enjoy some special family time together.
All our love,
Shane, Lok and Family
Ned says
First time I’ve commented, but my thoughts and prayers have been with Ethan since day one. And Luke and Jerusha; my admiration for your positive spirit knows no bounds. Your journey (and the way you have described it) is simply uplifting. Best wishes.
Karin says
So glad to hear how well the operation went. I am a nurse, and as a nurse I agree.Fight for your child. As a nurse I want what’s best for my patient. And if the request comes with a friendly voice and above all GOOD REASONS! I am more than happy to work things out. And please. Don’t worry about disturbing the nurse. We get paid for this. It is our job. You are not disturbing us, you are asking for assistance!
I am so glad things went so well. I hope it will be a speedy recovery from here on and that the results from the tumor willprove it was still allinside the kidney!