Well it has been nearly a month since I wrote last! I thought I would start my blogg with a photo of our adorable children. We bought a new couch last week (yes I know it is white and yes I know that white and children don't usually mix but it looks so good in the room and it is leather so it will clean) and on Sunday Tiernan discovered that he and Arielle can both fit on the armchair and he asked me to take a photo of my two beautiful children.
A few notable things that have happened of late with the kids that will make you laugh - the other day Tiernan was having a shower with me and he said "mum you need to shave your legs" so I asked him why he thought I needed to shave my legs to which he replied "you have lots of whiskers on them!". Needless to say after being told I needed to shave my legs by Tiernan I promptly shaved them. Little miss Arielle started solids a few weeks ago and she just loves them. She will eat anything put in front of her however it has even further diminished her liking of her bottle. She throws big tantrums sometimes when you even bring the bottle near her and on Friday we had a call from childcare as she was absolutely refusing her 12.30pm feed and screamed and yelled when they even picked up the bottle and she could see it. In the end she skipped the feed altogether and was happy as larry until her next feed at 3.30pm! Cam and I had a giggle and wondered what sort of phone calls we would get from her school when she is 16!
Well what have we been doing with ourselves for the past few weeks. I was released from hospital on the Thursday (March 21) and then Tiernan, Arielle, Nat, mum, dad and I went to Sydney on the Friday morning. We had a lovely time in Sydney catching up with everyone and Tiernan had lots of fun playing with his cousins and Arielle loved meeting all these new people who told her how gorgeous she was. We came home from Sydney on the Monday afternoon having had a wonderful time. On Tuesday unfortunately I started feeling a little unwell and by Wednesday Tiernan was also unwell.
On Wednesday we received the terrible news that one of the little boys in our mums group had drowned. It was devastating news and even now I still struggle to believe that such an adorable little boy is no longer here. I delayed chemo and we went to the funeral a week later and although it was the saddest funeral I have ever been to it was also the most beautiful service - I had lost a lot of faith about afterlife lately yet somehow his service restored a lot of that faith I had lost - I truly believe he is still out there in spirit and still by his mum's side and shining as a bright new star in the sky.
During this time Cam, Tiernan, Arielle and I all managed to fall ill. The kids were only sick for a few days however Cam and I went through a see saw of being sick for a few days then getting better and then getting sick again. Natalie also went back to London which was very sad. I really miss her so, so much. Then it came around to Easter. We had a friend, Theresa, from Melbourne and friends from Perth (Collette and Tony and their boys) come and stay with us for Easter. We had a lovely time and Tiernan loved having new friends to play with. On the night before Easter we hid eggs all over the house and yard and on Easter morning Tiernan was so excited he was jumping out of his skin - he struggled even getting the words out of his mouth when he came in to tell us that the Easter bunny had left eggs all over the house. The three boys managed to find all of the eggs and were very good about sharing them. Arielle also managed her first taste of chocolate much to our shock. She had been given a fluffy bunny holding a big foil wrapped egg. She loved holding it and as it was wrapped I did not see any harm in it. I was chatting away when I heard a slurping noise - panic set in as I thought she must be choking on foil (yes I know I should not have left a foil wrapped egg in her hands). I looked down and was amazed to find that she had actually unwrapped the foil and was slurping away on the egg. Luckily it was a large enough egg that she had really only sucked it and could not bite into it. I promptly took it off her and we were presented with the hugest tantrum and scream session I have ever seen her deliver (and she can do some beauties). Needless to say we no longer leave any chocolate (or any other food for that matter) within reach of her - she even tried grabbing a beer out of Cam's hands the other day! Our Easter Sunday was a lovely day with some more friends (Matt and his family and Brendan and his family) came over for a BBQ. Unfortunately my health continued to go downhill and chemo was delayed another week.
On Sunday just gone I was still not totally better however I came into hospital anyway as I just wanted to get the chemo over and done with. During the past few weeks I had been having a few problems with dizziness, night sweats, numbness in my hands, difficulty breathing, chest pains and this silly cold that just would not go away. I started my chemo on Monday morning and Cam came in and visited last night. Then this morning Kylie and Emily visited and Cam came in with the kids. Whilst they were here I had a full body CT just to be sure nothing untoward was happening. Kylie and Cam (and kids) left and then mum arrived soon after. Whilst mum was here I called Qld Xray to see if my results were ready which they were. I sent her down to pick them up. She brought them back to the room and I opened them. The results had a lot of medical mumbo jumbo but the crux of the matter was that it appeared that the new tumour had grown. I tried calling Kerry to see if I could talk to him but his secretary was not there. Tim then arrived to have his blood test to see if he was a stem cell match (got Nat's results this week and she was not a match and we are still waiting for Ben's results). My friend Gayle popped in as she had been going to Kerry to have her review and just as it was her turn she was told that Kerry had to urgently go up to the ward to attend to a patient. I said that was good timing as I needed to talk to him about my results as they did not look good. So I buzzed the nurse to ask him to ask Kerry to see me whilst he was on the ward. Before the nurse answered the buzzer Kerry and Dianna (Nurse patient educator) walked in the room and asked to speak with me alone. I knew something serious was happening. The bad news is that the new tumour which was 3cm on March 7 is now 4.7cm diameter. Previously it had been near my lung and heart and pulmonary artery and unfortunately now it was touching the lung and the heart wall and was also around the pulmonary outflow artery - all in all not good news. Basically it means that this tumour is not reacting at all to any of the chemo ("kicking the chemo in the face" were Kerry's words). So they stopped the ESHAP chemo immediately. Kerry is very concerned as the growth is quite aggressive and obviously being so close to my lung and heart is a huge worry. I am having another needle biopsy tomorrow to determine whether it is definitely Hodgkins (last one had inconclusive results). If that does not give conclusive results then I will have to have a thoracic surgeon do a biopsy under a general where they deflate my lung and stick a tube in - not fun! They need to get an absolute result though to make sure it is in fact Hodgkins. If it is not Hodgkins (I think that would be the preferable option at present) then I would have to start on whatever treatment is suitable for that type of cancer. If it is Hodgkins (most likely) then unfortunately the outcome is a little dicey. There is apparently another chemo regime available however seeing as the tumour has already been resistant to chemo it is unlikely to respond to that one and at present they don't think I have the time to try a treatment that is unlikely to work. So the only option available is probably to have the BEAM (blasting) chemo and then have my stem cells put back in me. This is not ideal as they usually use this chemo on tumours that have been got under control using other forms of chemo and not agressive active tumours. So again the chances of success don't seem that great. Kerry is concerned that with it being so agressive and so close to heart and lungs that I don't have a lot of time to play with as far as treatment goes. I was not at all surprised that the tumour had grown as I have had a gut feel about that for a few weeks however I was totally shocked that this chemo was stopped and how serious it is - I thought that it would just mean I would have to have a few more rounds of ESHAP before going on to the BEAM and stem cell transplant. I will talk more to Kerry and Dianna tomorrow to try to understand a little more as I am not sure how much I absorbed in my state of shock today.
So right now it is just a waiting game until we get the biopsy results and know what we are dealing with. So lots of prayers are more than welcome and I will keep in touch as much as I can.