Last night I read ‘The Chemo Chronicles’, a quarterly magazine for families of oncology patients at Westmead Hospital. Each time I rejoice as I read the ‘Congratulations’ page which lists the names of children who have finished treatment. Each time I shed some tears as I read through the ‘condolences’ page listing the children who have lost their battle with cancer. Even if I don’t recognise a name on the list it is still devastating to me. Last night I read an article written by a parent who made the comment that the only 3 places they ever go is the hospital, home and the shops. They said no other place exists during this time of their life as cancer is all consuming and everything else doesn’t matter. It probably is true for most. Fortunately for Ethan his treatment has not been as demanding in comparison to children with different forms of cancer. However on top of that we have tried to keep life as normal as possible for the family, which has been important to us. There are times where I think we could have kept things a lot simpler. However we then added a whole heap of crazy to the mix by buying a house, selling a house and moving house. It really has been an insanely busy and stressful period of my life! This is why you haven’t heard from us, not because we haven’t had a lot happening to report on. The PC is still packed away (and has been for 3 months as we de-cluttered our home in order to help sell it) but I’ve hijacked Luke’s laptop to keep you all updated. I think I’m about to write about a lot of things all squashed together so please forgive me in advance.
The last time I wrote (from memory) I was talking about how much better Ethan has been on chemo. While that is still true I kind of wrote a little too soon! Just two days after that Ethan passed out and then slept for a good chunk of the day after not eating for several days in a row. As he was still moving round and doing activities we didn’t monitor his food and water intake as closely as we should have. He got multiple ulcers in his mouth and all down his throat, the nerve pain came back, he has lost his reflexes again as well as his spacial awareness (he is covered in bruises) and some of the screaming came back a little bit when he is extremely tired. So the next time he had chemo we forced him to take the anti nausea medicine for longer than he likes and for 4-5 days it was my full time job to try and get him to eat and drink little mouthfuls at a time. He did better. We also stayed on top rinsing with bi-carb soda several times a day to keep the ulcers at bay. For those who follow my facebook you would know that Ethan had a hospital admission due to a fever. It turned out to be his best admission yet! He got his own room and he had visitors both of which were very exciting. The best thing that happened was he lost a tooth for the first time at the beginning of his stay. Well this just put him on cloud nine. Every person that walked in the door got to see his tooth and read the letter he wrote for the tooth fairy. The tooth fairy came to the hospital and then he got to show everyone his $2 coin. He took in his guitar and had fun making up songs. So he survived the admission quite well. Thank you to those who came to visit. Then he had a really bad week at home only to come back to life again after a blood transfusion. His best friend Sam came with him to the hospital when he got a platelet transfusion which made for a fun hospital day.
Now having said all of the above we haven’t been worried or concerned. In fact we have been celebrating! A few weeks ago our oncologist announced that the chemo Ethan is due to have tomorrow is his very last one!!! Yes you read correctly. Tomorrow Ethan is going to have his last chemotherapy session! We couldn’t believe it. It came sooner than we expected. Just the thought of being at the end sent us into celebrating mode. All of the illness, ulcers, bangs and bruises have been dealt with much better as we can see the end of the tunnel. Ethan is thrilled to bits, as is everybody else. Blaise is having the day off school tomorrow to come to the hospital with us. We are going to go out for a late lunch afterwards to celebrate as the chemo doesn’t hit him for a couple of hours but I know he won’t be eating come dinner time. I can’t find the write words to describe how I’m feeling right now (although whatever they are ‘fatigued’ should be added to the list). I feel so grateful and blessed for all the miracles we’ve seen over the past 7 months. So many people have helped us and blessed our lives during this time and I also feel deep gratitude for those people. To be at the end of the chemo is an amazing feat and I’m so proud of Ethan for being so brave and strong during this battle which he has conquered.
I know we can’t get too far ahead of ourselves. The journey isn’t completely over. Over the coming weeks Ethan has to have a whole series of tests including a CT scan, MRI, ultrasound, heart ecco, eye tests, muscle tests, weekly blood tests etc. The purpose is two fold. Firstly to be 100% certain that all traces of cancer have left his body. Then all the results will form a base for the testing he will have over the next 5 years to make sure the cancer doesn’t grow back. He will have tests done every 3 months. If all test results come back clear he will have surgery at the end of May to have his central line removed. This will be just as exciting to Ethan as the end of chemo! He has been very good at taking care of his line and regularly checking to make sure the clips are closed. He protects his line by sitting out on activities where he thinks it might get knocked. It hurts him if it gets bumped or pulled at all. So we are saving our big celebration for after his surgery. I don’t know what we are going to do. Ethan wants to have the world’s biggest party by inviting every person he knows. I just want to sleep! I mean really sleep without being awake for hours, checking temperatures, calm a screaming child or think about the long lists of things that need doing the next day. Did I mention that I’ve been feeling worn out lately?
I booked some flights for Luke, Blaise and Ethan to have a little boys trip down to Adelaide in May. Luke was going to go and then I decided that it would be good for Ethan to spend some time with his Adelaide family and then I thought I shouldn’t leave Blaise out of the trip! So that will be a mini celebration for them before the surgery. The boys are looking forward to this. The need to have something to look forward to has been highlighted to me over the past several months. Throughout Ethan’s treatment we have always had little things to look forward to and it has definitely helped. Camp Quality has had a huge part in that. Now that we are nearing the end Luke and I are trying to decide when we are going to go to Disneyland! Everyone else wants to go during the Christmas holidays as we will make a side trip to Utah to visit some close friends and family. The kids are dying to see snow, build a snowman and go tobogganing. I’m the only hesitant one. I do not like the cold!
When Ethan was first diagnosed I mentioned that for those who would like to do something to help but lived too far away to do so, donating blood would be a wonderful thing to do. Since that time there have been many of you that have gone out and donated some of which was their first time doing so. One of my cousins organised for the Red Cross mobile van to go to their school and had over 80 people donate blood! That was amazing. Thank you to all those people. On a weekly basis I see how important blood donation is. Current blood supplies are low, so if you can spare some time and a little bit of blood I know the Red Cross would be grateful for your donation. I also know that the recipient will be grateful to you even though they will be a stranger!
That is it for now. I need to go get everything ready for tomorrow and get some sleep. Only 1 more sleep until the last chemo, YAY!!!!!