Well the days keep passing by ever so quickly. I’ve been wanting to write a post for a few days now but the hours just seem to evaporate into thin air!
Ethan is recovering really well. We had a couple of really tough days in hospital when they took the epidural out. Every movement caused pain and distress and so we worked hard to make him as comfortable as possible. Once all the chords were out I was able to carefully climb up on his bed next to him and just read him stories and talk. That was nice.
On Wednesday our surgeon came into the room with four people from the radiation team. We were then taken to a little meeting room to discuss the radiation plan for Ethan. We had hoped and prayed that he wouldn’t need radiation on top of everything else. As there were spots in the lungs initially we were told that the radiation was unavoidable. However because the lungs had come up clear the last few scans he doesn’t have to have targeted high dose radiation to the specific spots. He just has general radiation around the whole upper torso to get all of the lungs. It is done at a really low dose so he doesn’t feel burning or discomfort. The possible side effects aren’t as severe as first but still not brilliant at the same time. We both really liked the Doctor who is the radiation specialist. She is a scientist/doctor from the adult hospital (where the radiation machines are) and she doesn’t have kids yet we found her one of the best specialists we’ve talked to yet.
On Thursday Ethan had his mapping session over at the adults hospital. A porter came and wheeled him and his whole bed over. They carefully picked him up (he was still in a lot of pain) and lay him on the bed for a ct scan on top of a bean bag. They sucked all the air out of the bean bag. They then had different lazer lights set up. They did a ct scan and marked some ‘x’ points on his body and contacted over them. So each time he has radiation he lays on his bean bag and they align the machine up with his crosses. The margin of error for radiating the lung region only is only 3 mm. I was quite impressed with the process but especially impressed with Ethan who didn’t move at all and let them do everything without complaining once. He got through it all really quickly much to their amazement.
Ethan started radiation on Friday. He has to have it every day up until and including the 24th. He only needs that one course and he will be done with radiation for good.
When 6 Doctors just walk into your room unexpectedly you know they have something to say. The results from the histology of the tumours and kidney etc came in. The fantastic news is that everything was contained within the lining of the tumours and kindeys. So nothing was growing on the outside. All of the lymph glands that were removed came up clear as did the adrenal gland. The histology of the tumours themselves were interesting. The two tumours in the left kidney actually came out ok. However the small tumour in the right kidneywas blastema predominant. This is an intermediate result. What does it mean? Well because there were spots on the lungs we know that one of the tumours spread. Some of the particles that spread are so small they don’t show up on scans. That is why we are still doing the light radiation. The results of what the tumours are determines the chemotherapy treatment post surgery to mop up any residuals that may still be in the body.
The Doctors are a bit puzzled as to what to do. Do they assume that the spreading came from the large tumours in the left kidney and follow the treament plan for that result? Or do we think that the spreading could have come from the small tumour in the other kidney? Our oncologist said he would err on the side of caution and treat it all as blastema predominant however they have emailed the results to the chair of the Wilms Tumour Study in the US and are awaiting his comments as to how to proceed. The difference between the two treatment plans is that one would have three types of chemotherapy like what he had pre surgery. The other would introduce an extra two types of chemo upping it to five different types of chemo he would receive. The time frame is the same for both plans – either way we are looking at another 16 weeks of chemo. I really want them to get it all but the thought of five different drugs when I saw what three put him through is a bit of a depressing thought! However we don’t have a say in it, we just need to go forward with whatever is prescribed.
We were originally told that Ethan wouldn’t be discharged until he could do all of the following things unassisted:
- Eat
- Drink
- Sit up
- Stand up
- Walk
- Go to the toilet
On Friday he could only do the first two by himself however they came round that afternoon and said they were discharging him. I will admit to being anxious and worried about them booting him out so quickly thinking he still needed special care. However I will admit that the Doctors were right, he improved drastically at home. At home he had motivation to get up and move around. Every day he has improved drastically on the previous day. He hasn’t had any pain meds since Saturday and even then he only took panadol. Today he walked from the car into school to say hello to his school friends for 10 mins. He then stood on the end of the trolley while I did my grocery shopping! We have had a couple of really bad nights at home where he has screamed for hours on end with nerve pain and constipation. Last night in particular was terrible. I say things are going really well and they are but that doesn’t mean there are not difficult times. We have had some really tough moments over the weekend.
On top of all that we had Blaise’s school Christmas Concert and a band information night for next year etc etc. Luke had to make a quick trip over to Perth for some business meetings today but he is back on the red eye tonight. Vienna and Blaise had a fun time with family and friends while Ethan was in hospital. Vienna slept at my sisters for a couple of nights which she loved. Blaise got to have a sleep over one night with his Grammy and Papi which left him on cloud 9 for some time.
Ethan had a school friend visit him in hospital which he LOVED. He got given a skylander swap force figurine which he didn’t let go of for the rest of his hospital stay. Uncle Sam visited which he LOVED. Aunty Laura and the girls came twice. Nurse Asha came along too (she has been so dedicated in helping us through this time of our lives) and of course we had the grandparents visit. On top of that Ethan had a few visitors which some of you might know. Here are a few photos from the last week for you:
Julie says
I really enjoy your posts. I am continually amazed at the strength and faith you have. I can only imagine how difficult it must be to have Ethan in pain. Loved picturing you crawling into his bed and reading stories. We continue to pray for Ethan. I know Laura is gone and has helped out with Vienna, if you ever need help with her I am happy to help. I meant that. 🙂
Mari Ann Felix says
So happy to hear such good news of the strength Ethan has had. I’m sure there have been very difficult moments and we pray that they will be an end to them soon. We have been very inspired by the faith and hope expressed in your blog. May God bless your home this Christmas and all year round. Love, The Frlix Family
Laura Rice says
I have been thinking a lot lately about how you are all doing. I hope ethan has been well and you all had a wonderful Christmas.
Love the Rice’s