Alive and still kicking

Hi this is Natalie Vella, bernadettes little sister in london being her PA (typing what she is telling me to write)..

Bernie (Bernadette to everyone else) is very sorry she has not updated her blogg recently as she has been pretty busy keeping herself alive. Everything is good now and there will be a full update some time soon, but Bernie was worried that people may worry as she had not written for so long. I have had to type this for her as it is currently 5am Saturday morning in Australia and the last time she was asleep was 7am Friday morning. Despite all of that, her day has gone from good to better, peaking at 3am in the morning with a revelation her and her friend Kylie made. At 4am they both took sleeping tablets to try and get to sleep, and Kylie is fast asleep but Bernie is still completely wired and is she is only just starting to get tired and she could not focus enough to type so I have done it for her.

Love to all, and after reading this give extra specials cuddles to the people you care about and one last thing she asks is everyone to say a pray of thanks to Catherine McAuley and God.

Just started artificial feeding

Well I have just started TPN which is basically where they feed me a bag through my port a cath over 24 hours that contains all of my nutritional requirements. My gastro tract (GI) has decided to pack it in and therefore I am not absorbing my food - it was one of the side effects of the chemo that they were prepared for so it is not really that bad. The TPN will allow me to not worry about eating and give my GI tract a bit of a break. The good news though is that I am allowed to eat anything I do feel like so it is the best of both worlds. I am hoping that once this TPN kicks in my energy might pick up a little. The tiredness is pretty bad still but if in 6 months I am at home playing with the kids and Cam then it is all worth it.
Yesterday I had a nice day. Cam and Tiernan came and picked me up in the morning and I spent the morning resting at home (yes resting - I actually sat on the couch and even spent some time sleeping in bed). It was an effort to get out but it really picked up my spirits. Jane and Lucy visited in the afternoon and they brought me back to the hospital. I had a blood transfusion last night and actually fell asleep at 7.15pm. I then slept until about 1am but had a fitful sleep the rest of the evening. I felt pretty miserable this morning and did nothing but rest but that is what I am here to do! Mum came in and visited with some of her special home made chicken soup for lunch which was just heaven. She has left me a good supply of that and dad's yummy chicken and corn soup and they are just perfect for how I am feeling - the medicinal properties of home made chicken soup never ceases to amaze me! Then Cam and Arielle came in and had a visit which was just lovely. I don't often get to spend time with just Arielle and it was some really special time and I got lots of lovely cuddles and chats. Arielle then had a little nap and Cam and I got to just sit and be - it was so nice. Once we were well rested, Sue brought Tiernan in and he had a lovely visit. He was such a well behaved little man - I cannot believe how much he has grown up - he has coped with so much in his little life - I am really proud of him.
So now it is time for me to rest again - it looks like I have gone to granny hours - it is 6.15pm and I am thinking about bed! My stem cells will go in tomorrow. They said I will still be going downhill for a few more days but at least the process will be underway. I hope everyone has a lovely night.

Feeling tired

Well the chemo has certainly kicked in on my body - I have never in all my life felt so fatigued. I am usually the bound out of bed kind of person but at the moment I am spending most of my time lying down in bed often too tired to even read or watch tv. This is a good thing though as it must mean the chemo is working. My counts are slowly on their way down at the moment but I am not in danger zone yet. I am being very diligent with mouth washes and hygiene and hopefully I will be able to stay reasonably well.
Yesterday I had the most lovely brunch with my mum's group. Sarah picked me up and we went to Tenerriffe where we met the other girls and the six of us got to have some long overdue chats. It was definitely food for the soul and we are hoping it will be a monthly event. I was quite tired afterwards and spent the rest of the day in bed. Sue and Tiffany brought Tiernan and Arielle in (Cam is up at rescue helicopter) and I had a lovely visit with them. The kids always cheer me up. After that Jess and Tim came for a visit and brought in a lovely polar fleece blanket which is currently wrapped around me (as I am tired and losing weight I am feeling so cold). They also brought me in some Froot Loops - I am having difficulty facing breakfast and thought some Froot Loops might do the trick.
Today I rested in bed until lunchtime and mum and dad were going to bring in take away Chinese. I decided it would do me good to get out so we went to the Chinese restaurant instead. It was really yummy and I ate a lot and even brought some chicken and corn soup and wonton soup back with me to have for dinner tonight. Mum and dad left a little while ago and I am about to go back to bed now and maybe watch a DVD.

Day 3 of TMC is over

Cam and I in WA before all of this










Well I have finally made it through this regime of high dose TMC (Thiotepa, Mitoxantrone and Carboplatin). The plan now is to rest and recover a little for the next few days. Then the plan is

• Wednesday 2 May - stem cells reinfused (just like a blood transfusion)


• Thursday 3 May - start on my daily Neupogen injections for 10 - 12 days


• In about 2 weeks I will have a CT to see if this worked at all


• I will then stay in hospital until they consider me well enough to go home and rest - by that stage I need to have good cell counts as well as being able to get enough nutrition in (this chemo may cause some effects on my gastro tract)

After we get through this then I will be going on to have a second high dose chemo regime called BEAM with another stem cell transplant (my own again). They have warned me that I will be extremely fatigued from now until day 100 post the second transplant and then not to expect normal activity levels for up to 2 years. As this is an unusual situation and they have not given the TMC protocol here before I am a bit of a test case by the sounds of things so we will just have to take each day as it comes.

A point to note about stem cells - Cam was reading a really good blurb about it and thought it might be handy for me to post it here...

What is a stem cell? Stem cells originate in the bone marrow and are referred to as 'seed' or precursor cells. Bone marrow is the spongy tissue found in the cavities of your bones where all of your blood cells are produced. Each type of blood cell in the bone marrow begins life as a stem cell.

The stem cells then divide and form the different cells that make up your blood and immune system. These include white cells that fight infections (leucocytes and neutrophils), red cells that carry oxygen (erythrocytes) and platelets that enable blood to clot thereby controlling excessive bleeding.

Under healthy circumstances stem cells are found in very small numbers in your blood stream (peripheral blood) and in larger numbers in your bone marrow.

Stem cells can be stimulated to increase their numbers in your peripheral blood. This process is called mobilisation. Once the stem cells have left the bone marrow and appear in the blood stream they can then be collected for the stem cell transplant.

The high dose chemo obliterates your bone marrow and therefore cell production. This is when the stem cells are reinfused into your body and they then take 10 - 14 days to graft and start to produce mature bone marrow cells.

Hopefully this will help everyone understand a little more about the process.

So far it has not been too bad. I fell a little nauseous for most of the day but there has been no throwing up and no diarrhoea. The head spins have been controlled with drugs (I take about 20 tablets a day in addition to the volumes of drugs going through my port). The only bad side effect is absolute extreme fatigue. I have never in my life felt so tired. I am spending most of the day lying in bed either sleeping, dozing, listening to music or watching DVDs. I dont even have the energy to feel bored - having to get out of my bed to go to the bathroom is an adventure in itself! But dont feel sorry for me - this is a road to recovery - a road to the light at the end of the rainbow. Sure enough the next few months will be tough but it will be worth it. You never know I might even learn to relax and like it!

If I am feeling well enough tomorrow morning I might be allowed out for a short visit as my mum's group (mum's only) are going to brunch and I would love to catch up with them - so fingers crossed if I get an early night tonight that I will be up for a few hours day pass. On Sunday mum and dad come back from Stradbroke and are going to a BBQ at Ben and Rebecca's - hopefully if I am well enough I will be able to pop over to that for an hour or so as well. Cam is at rescue helicopter this weekend and the munchkins are with Bob and Sue so they will be bringing them in for a visit to me as well which will be nice. So all in all it should be a quiet restful weekend.

The house is getting there a little more now and hopefully next time I am home I will be able to take some photos. We cannot wait to all live there as a family again. We are all missing each other so much but Cam is really great with the kids and he brings them to visit me and puts them on the phone to talk to me but it will still be so nice when I get to go home for good.

Day 1 of TMC

Hi

Well this will be an extra quick blogg as I am so very tired today. I have been out and about the past few days and then the chemo started this morning. Today involved three drugs one of which made my urine bright blue. The second one was pretty uneventful but the third one gave me dreadful headspins and dizziness so I have been on a tonne of anti-emedics today to combat and prevent side effects. I have felt a little nauseous but have not had any diahoarea or vomiting which is good. Jane spent the day with me today and that helped the day go much faster and it was lovely to have time to have some girly chats. I will write more tomorrow when I am more awake.

Results are in

Quick update as I am about to go home for a visit - I have received the results and the tumour is definitely Hodgkins. Kerry has decided to give me some high dose chemo starting next Wednesday and involving three drugs called Thiotepa, Carboplatin and Mitoxantrone. The chemo will go for three days and will make me feel quite nauseous. Then the following Wednesday they will then give me the stem cells back. That week I will also have a CT scan to check on the progress. Once I recover from all of that (between 3 and 6 weeks) I will then get a month at home and then have another high dose chemo regime followed by another stem cell transplant (my own stem cells again). Then I will have some radiation. If that all does not kill the cancer altogether then they still have a few other drug options that they can try on me to either kill the cancer or at least keep it under control to give me some more time. So fingers crossed this all works!!

No I haven't fallen off the planet!!

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.