This morning it became obvious that Ethan wasn’t up for much. So we put a movie on. I should have known something was wrong when Ethan turned down a bowl of popcorn, but I thought nothing of it. 20 mins into the movie Ethan asked me to turn it off as he was tired. I asked if he wanted to go back to bed to which he replied he did! At this stage I still just thought he was tired.

One hour later Ethan woke up screaming. His temperature was 37.9. We had been instructed to call the hospital if he ever reached 38. So I gave him a cool sponge bath to try and cool him down. The whole time Ethan said he was cold so he shouldn’t have to go to hospital. However he felt pretty hot to me! After his sponge bath I put a cool washer on his head while he lay on the couch. 15 mins later I checked the temp again and he was up to 38.4. So I started scrambling. First I called the hospital to let them know to expect us. Then I called dad who came and collected Blaise and Vienna. Then I quickly packed everything we would need.

15 mins later we were in the car on the way to the hospital. Ethan was quite sad about having to go but kept thinking he wouldn’t have to stay in overnight. I had to break it to him, a temperature over 38 signifies infection which means a minimum of 48 hours on heavy antibiotics.

We only waited 5 mins in emergency. Being an oncology patient they pushed us straight through. We were sent to the same isolation room that we were in when we first arrived in emergency back when the journey began. Within 10 mins of being in the room a Doctor and Nurse came to question and do observations. They detected a heart murmur followed by a fast heart beat. Blood pressure was up. They asked a lot of questions. I told them about his irritated eye and droopy eyelid that he has had over the past week. They weren’t sure that had anything to do with it. They took blood samples for testing the blood counts as well as to make blood cultures to see what the infection is. We will have the culture results back tomorrow. The antibiotics were then plugged into his central line and we were set.

After 4 hours of being in emergency a bed became available in the liver and kidney ward. Oncology is full at the moment. Apparently it has been a very busy year in oncology. The ward we are in are still very strict with hygiene and the comings and goings. There are children there who are about to or just had transplants. We are sharing a room with one other little boy who is also an oncology patient.

This will delay his chemotherapy by a week. I know there are always going to be hiccups along the road but that still doesn’t take away the disappointment that we have had this one. I know we can’t always prevent these things but I have found myself going over everything we’ve done in the last 48 hours wondering where the infection came from. Knowing there will be hiccups and minor setbacks doesn’t take away the surprise and disappointment when they do come. Everything had been going so well! I’m praying it is an infection in Ethan and not an infection in his line. Having to have surgery to get a new line would be a huge setback we could live without!

Luke arrived at the hospital just as we were being transferred upstairs. We all settled in, had dinner and talked for a little while. Then we picked out a DVD for a movie night and I said good night. Ethan was in good spirits when I left. He certainly loves the 24/7 attention he receives when he is in hospital! He called me before going to sleep to say that the Tom and Jerry DVD they got from the hospital library was hilarious. He plans on watching it with me again in the morning.

 

On Tuesday Ethan went for his 6 week CT Scan.

I will give a brief background to this for those who are just joining us. If you want the results skip to the end!

Normally with Wilms Tumours the plan of attack is to operate straight away to remove the kidney and hence the tumour. This is then followed by chemotherapy. However having stage 5 bilateral Wilms tumours complicated things! As there are tumours in both kidneys and spots in the lungs the plan of attack is to save as much renal tissue as possible. So instead of going straight to surgery we started a 6 week chemotherapy plan to try and shrink the tumours before removing them.

Before we started chemotherapy, we were told that there were three possibilities:

1. The tumours don’t respond and keep growing
2. The tumours respond to treatment but then start going haywire and growing in unusual ways
3. The desired outcome that they respond well and start shrinking quickly.

However we also needed the chemotherapy to work in the lungs to stop the cancer spreading there. So really a lot had to happen in order to have the desired outcome.

We could tell from the feel and look of Ethan’s tummy that the large tumour in his left kidney had been  shrinking. We were excited by that and remained optimistic and faithful that we would get the outcome we were praying so earnestly for.

There was quite the lead up to the scan itself as we were undecided on whether or not to have him do the scan under a general anesthetic or fully awake and hence having to lie completely still.  The night before we weren’t feeling too optimistic. He had had a bad afternoon/evening with uncontrollable melt downs and hysteria. That is one of the hardest things to deal with as we are sometimes powerless to help or to know what to do. However Tuesday morning Luke and I both pondered it and prayed about it independently. We both came to the same conclusion – that Ethan could definitely do it awake. This meant he didn’t have to fast all morning which was a huge plus.

Ethan was AMAZING! He lay so still and was so well behaved. I stayed next to him for the whole scan dressed in a big suit to limit the radiation I received. He did everything he was asked to do and they managed to get the image they needed on the first pass through. It only took a few minutes. Definitely better than fasting and suffering the effects (short and long term) of having another G. A.

We were given a preliminary overview from what our oncologist could see on Tuesday. Today we received the official results from the experts who read the scans.

Ethan’s lungs were 100% clear of spots. The spots that showed in the first scan are no longer there and no other spots were found! We are THRILLED with this outcome! The tumour in the right kidney is now quite small and very contained. It should be a straight forward surgery to remove that one. The tumour in the left kidney has shrunk a lot, however it is still large. Considering how huge it was to begin with this is not unexpected or sad news. It is great news – the shrinkage that has occurred is significant. The surgeon and the oncologist both agree that we should proceed with another 6 weeks of chemotherapy so the tumours can continue to shrink before surgery.

We are all booked in to go, continuing with our Thursday chemotherapy treatments. Ethan is handling the chemo and its side effects better each time. The number of medicines he now requires is far less than at the beginning as he doesn’t need as much anti nausea any more. After this next 6 weeks he will have another scan and an MRI to get all the final images ready for surgery.

We are truly grateful for the outcome we have so far. This is a huge blessing for Ethan and our family and an answer to many prayers! We want to express our gratitude to all those who have joined with us in fasting and praying for our little boy. We continue to receive cards and well wishes from friends all over the country and globe. We feel so blessed to have such wonderful support and combined faith exercised on Ethan’s behalf and we thank you for it.