It’s hard to remember all the things that have happened since I last wrote about Ethan’s health! Sometimes I feel as if I have lived a couple of years in the past couple of months and other times I feel like it’s just been days.
We survived our stay in hospital. Ethan was completely exhausted after having 3 types of chemo last week. That knocked him out for several days. This week he had just one lot of chemo. He is still tired and out of sorts but has managed to leave home a couple of times etc. He has bad ulcers at the moment which are really upsetting him. As a result of this he is not eating much but then he gets upset because he is hungry. We do know of something that will prevent the ulcers (bi carb soda and water) but he won’t take it.
Ethan gets upset so easily, crying and shrieking at the smallest of things. He is beyond reason and highly on edge. He has been waking up crying multiple times during the night. This makes caring for him more difficult but it is part of the process. We aren’t down and out about it – we are dealing with it just like everything else. Trying to be upbeat and positive. I only mention it to be honest. I decided it is best not to sugar coat things. If other people with Wilms Tumours find our blog we don’t want them reading a glorified account and think ‘why is my child not coping as well as this child’. We have had those thoughts about Ethan already where we were only told the best case scenario and were worried when the worst case played out. Last week he snapped out of this stage 3 days after his chemo, naturally we are hoping that he will snap out of this week too!
Ethan’s blood counts are out their lowest yet. This means he is at high risk of picking up another infection. One of the highlights of his week this week was going to school for 2 hours on Wednesday. However there is a reported case of chicken pox at school and so we won’t be taking him to school this week. He is always happier when he escapes home for awhile. He certainly doesn’t scream and carry on for other people! So I will have to be inventive with keeping him entertained over the coming weeks. He only has energy for short spaces of time.
Despite having low blood counts from his blood tests our oncologist continues to be amazed with how normal his kidney and liver functions are. He says they are completely normal which is fantastic. The thing we are concerned with at the moment is his droopy eye lid. The nurses and Doctors we saw in emergency last week told us not to worry about it. I brought it up with our oncologist this week as I felt impressed to do so. He was more concerned about it. It is docummented as being a side effect for the treatment plan he is on caused by toxicity from the chemotherapy. It can be permanent damage. I need to observe his eye during the week and if it gets any worse we may have to lower his chemo doses.
All in all he is going well. The oncologist continues to be happy with his process. Last week after the 3 chemos he vomited less than ever before. He also started eating a bit sooner. He is still happily fighting it, telling us that his tumours are disappearing.
Kay Vinson says
Dear Jerusha and Luke,
You are putting on a brave face, and we know your faith is strong. We just wanted you to know that you are in our thoughts and prayers and our hearts go out to you as lovingly care for your family, particularly as you tend Ethan. Watching our children suffer is never easy and is in fact heart wrenching agony. We read your blog updates and continue to pray for heaven to hear your pleadings.
Much love,
Terry and Kay Vinson.