We were discharged from hospital on Thursday afternoon. Oscar cleared the chemo from his system very quickly and his recent kidney function test shows that he is within the normal range. So this is very good news and better than our Oncologist expected.
The time in hospital was very intense and without any sleep for me. I found a way to get Oscar to sleep a lot in there by closing him up in his pram and playing his ocean sounds music. He needs almost triple the amount of normal sleep when he has this treatment I have discovered and that seems to make a difference in his comfort levels. We shared a room with a newly diagnosed little boy the same age who did not speak or even move much. He has a different kind of cancer and his treatment and prognosis are considerably less positive than Oscar's and the family were really struggling to come to terms with the diagnosis. My heart goes out to them and I tried to give them any help I could but it was very distressing having the Dad sit on my bed at some crazy hour of the night asking me questions like, "Why has god done this to me and my little boy. He hasn't done anything to be punished for", and so on. I tried to gently explain that all the energy he has at the moment needs to go into helping his son and asking questions like that won't help and will just drain precious energy. I managed to calm him down but that night was very rough with many Dr's and nurses trying to help his little boy who has had temperatures for days without a cause, despite every test known to man. Oscar, as always, picked up on the energy in the room and kept saying "Boy crying, crying" and looking concerned. It is becoming clearer each time we go to hospital that part of Oscar's journey is to witness the journey of other little people facing similar and tougher challenges than he is facing. It certainly helps you keep perspective on how lucky you are and how there is always someone worse off than you.
We also discovered that the Camperdown Ward is like a crazy war zone these days as it is always completely full with between 10 and 15 people being refused beds every week. This just increases the intensity of the experience for everyone, especially the nurses. I had one nurse walk in and say, "Don't expect us to be nice to you, smile, talk or doing anything other than administer medication today. We are flat out, worked 12 hours straight without food or a break and still can't get to the buzzers on time. People are vomiting because we can't get the medication in on time every time and there are some extremely critical children needing extra attention." These nurses work long hours in difficult conditions with traumatised children and parents every day. The things they have to deal with are incomprehensibly challenging and I wish I could find a way to thank them and give them back some of the care they give to us and all the other families. I try to remember that as hard as it is for us to be there it is even harder for them to manage all the different levels of care, varying personalities of both parent and child and still keep on schedule and smiling. They deserve more help, more money, more volunteers and more gratitude than they get and I will find a way to thank them before we are through with this treatment.
Since we got home we have been anxiously waiting to see if Oscar would get mucositis and yesterday he woke with severe mouth ulcers throughout his mouth. He has been in a lot of pain and I have no doubt that if a Dr had seen him yesterday they would have admitted him to hospital straight away. I held off taking him while I was able to keep the pain medication and fluids in him. This is a huge responsibility and a tough call because he can't speak to tell me how bad the pain is and I have to be guided by my intuition. If I keep him home he heals quicker for obvious reasons and the minute he is in hospital all eating and drinking will stop and he will be anxious. On the other hand, in hospital they can give him all his medication through the central line and that is less painful than trying to swallow it at home. I made a decision to stick it out and was able to get the pain medication down his throat and continue enough fluids to get hims through the night and he seems slightly improved today. He has managed to play in the sandpit and forge ahead with some normality as long as I keep the pain medication and the mouth wash in. It is a huge relief that I made the right decision and I was able to manage it exactly as they do in hospital - setting my alarm two hourly to check his temperature and maintain medication and offer fluids throughout the night. Oscar slept much better than he would have in hospital and that also helps.
He's very brave as the pain is pretty excruciating at times and he has been nauseous and vomiting for days as well. All this is improved a little today. So hooray for Oscar and I feel certain we won't have to be in hospital now until the next treatment on Sunday/Monday.
The good news is we have only 1 more of these treatments to go. Yay!! It is a 24 hour, 7 day job keeping up extra medication and focusing on getting him through each one of these nasty treatments so it will be a relief to get that last one over and done with.
We feel like we have dropped out of normal life completely during this phase of treatment as it has taken up our entire concentration. We hope to be able to see everyone soon. Oscar turns 2 on Saturday, goes into hospital Sunday for the last treatment and we are hoping he will be fully recoverd by Auden's birthday on the 27th so we can have some form of celebration. I'll keep you posted.
Thanks to everyone who sent me messages, visited us in hospital and kept us in their thoughts during this really challenging time. We are grateful, grateful, grateful.