May 2009

May 3, 2009 – Recent Events

Sarah, Olivia and Kirsty
Sarah, Olivia and Kirsty

Well, it’s been a while since I’ve updated this blog or even uploaded previous journal entries. Life has been incredibly busy over the past few months. Also, I guess I haven’t been as motivated to maintain the journal as it forces me to ponder our situation with Olivia and sometimes I’d just rather not think about it. We have managed to sustain somewhat of a ‘normal’ life in that we have established a good routine in terms of school, appointments and having a family life. I should also point out that Olivia’s scans from mid-March were clear again. We were unbelievably relieved and elated. To be honest, this time last year (she relapsed April 23 last year), we really didn’t think that she would be with us today. I am so incredibly grateful to have her. Something must be working or at least helping, whether it’s the treatment she had, the homeopathics, acupuncture, chiropractic, organics, the holidays she’s been on or perhaps even some fairy magic – we’ll never know. However, I do know that we have one highly spirited, positive, brave little girl and I believe that her inner strength is what’s kept her here with us today. She’s amazing.

I have to say that the last few months have not been without stresses. Although Olivia is well at the moment, the possibility of her relapsing is a thought that constantly looms over us. Whenever she shows the slightest sign of illness, we tend to become a little over concerned. In fact, she’s been feeling a little under the weather over the past few days, loss of appetite, aches and pains, etc. Most of these symptoms have passed but she is still very lethargic. I know that she had a very busy first week back at school, plus she has been on some medication which causes joint pain and tiredness so it’s unlikely to be anything too serious. However, that concern is always there and I do have a tendency to think the worst and become rather overprotective. Having said that, we do try to remain positive most of the time. I am still of the belief that she will be okay. It doesn’t matter how many years we have had to face this beast of a disease, it is still so unbelievable to me. I know I would have a hard time believing it if it happened to us again. I don’t know if this is called denial or optimism – I think it’s the latter.

On the whole, Olivia is loving school and loving life. She is a very keen learner at school and she displays the same enthusiasm at home. She is always asking me to listen to her read (yes, she is at the beginning stages of reading) and to teach her sight words which she is always looking for when we’re out and about, on TV, in newspapers, wherever! James and I couldn’t be happier with the school – it is a lovely school community and they are very supportive of our situation.

Olivia’s hearing impairment does seem to be a source of frustration for her at school. Although her hearing aids help her to hear her teacher and other students in the classroom, they also pick up background noise which can make it difficult to hear in group situations. She told me that she didn’t like all the noise. I think she finds it all quite overwhelming and doesn’t always hear what people are telling her. It’s something we have also noticed. At times, she seems oblivious to people who are speaking to her when she is in a group setting. When we tell her that someone was speaking to her, she says that she didn’t know – it’s heartbreaking. We were concerned that this may exclude her from friendship groups at school but she seems to be coping and has formed some lovely friendships

Although Olivia is at school, I’m finding that life is busier than ever. We still have appointments each week after school, though I have managed to cut back as it was becoming exhausting for all involved! I’ve volunteered some time at the school to help out each week with literacy groups which I really enjoy as I get to see what the kids are doing and spend some time with Olivia. Sarah goes to Kidstart twice a week and absolutely loves it. She also really needs it. She has such a gorgeous little personality but we are finding that she seems to have some attachment issues with me. Put it this way, she doesn’t like to share me and is very competitive with Olivia (I should add the rivalry is shared!). She becomes extraordinarily anxious and upset at any attention I direct towards Olivia, which often leads to big tantrums and a lot of screaming. This is obviously the product of what we’ve been through with Olivia. Unfortunately, no amount of positive reinforcement and attention I give to Sarah seems to make much difference. We try many different approaches but to no avail. I have to point out that she can be just about perfect one on one.

I almost forgot – I had my routine scans at the end of February and my gosh did we have a scare!!! I had a chest x-ray and abdominal ultrasound. During the ultrasound, I got the impression from the sonographer that all was okay. I left feeling pretty confident that my x-ray would also be fine. I picked up the results later that afternoon. The x-ray report showed that there was some ‘pleural thickening at the lung bases’ and some additional lung markings compared to my previous scan. I wasn’t too concerned but since I was going to the GP for another complaint, I thought I’d enquire about the report. The GP appeared VERY concerned about the pleural thickening and immediately ordered a chest CT scan for me. She also spoke with my regular GP who agreed that this was concerning. Naturally, this sent me into a panic, not to mention the rest of my family. These doctors were seriously thinking that the cancer had returned to my lungs (one of the most common places for bowel cancer to spread, besides the liver)!!! I also, very stupidly, googled ‘pleural thickening’ which also indicated the worst – either it was asbestos fibres in my lungs or cancer! I had tried contacting my oncologist in a desperate bid for some kind of reassurance but he was unavailable. I spent that whole afternoon and evening panicking and sobbing, thinking that we couldn’t go through anything else. There is only so much a person could take. All I could think about was the girls and how incredibly unfair this was to them. I also wondered how on earth we would manage my potential cancer relapse whilst trying to deal with Olivia’s health. What a nightmare! This scare really did my head in!

I managed to get a booking for an early CT scan. I cannot describe the anxiety I felt that day – I could hardly breathe. I also managed to book in with my oncologist in the afternoon. James and I picked up the results just prior to my oncology appointment. I refused to look at the results and decided it would be best to hear it from my doctor. James and I were bracing for the worst. On seeing my doctor, I was a nervous wreck. He couldn’t understand what all the fuss was about and handed me my CT results. I burst into tears – my lungs were fine! There is possibly some scar tissue there from previous surgeries but certainly nothing to worry about. AAAAAAAAAARRRRRRRRRRRGGGGGGGGGGGHHHHHHHH!!!!!!!!!!!!!!!!!!! WHAT A RELIEF!!!!!!!!!!!!!!!!!!!!!!! How unimpressed was I with those GP’s!! I think I felt relief, joy and frustration all rolled into one. The main thing is, I was okay. My blood results were also good which can also give an indicator that cancer is present. My doctor then informed me that he didn’t see the need for me to have another scan for a year. Yay! However, I still require three monthly blood tests. I may have very well lost another 10 years of my life from that scare (geez, I must really be running out of time now!).
To conclude this update, I would like to add that James and I attended a special presentation at the Sydney branch of Mallesons Stephen Jaques in late March. Ben Fuller, one of the organisers of the Coast to Kosci for Kids bike ride, presented a short film of the gruelling ride and presented a cheque for $12,000 to the Sydney Children’s Hospital Foundation and Professor Marshall, one of the oncologists from the hospital, as well as a neuroblastoma researcher. These funds will support neuroblastoma research at the hospital. Again, we would like to pass on a huge heartfelt thanks to Ben and the team of riders for a tremendous effort and for supporting The Olivia Lambert Appeal.
I promise to make a better effort in producing more regular updates!
Also, we are currently making changes to our website and learning how to do it so hopefully, this will enable us to maintain regular updates.

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