This post is by far one of the longest posts I have written. It is also one of the most meaningful and important posts that I will probably ever write.
Last Saturday night, I had the pleasure of taking part in The Leukaemia Foundation’s Light The Night, at Cronulla.
Photo credit: Lisa Bouveng
I have a personal history with Leukaemia in my family. My older sister Lisa was diagnosed at the age of two.
I was a little bubba while she was undergoing treatment and I spent a bit of time in the hospital with my mom and dad during that time.
Lisa and I
My amazingly strong mum
That story is an emotional story, which is not mine to tell in such a public arena, so I will leave it to her to tell you her story.
Lisa’s Journey:
I was 2yrs and 4mths when I had very bad pains in my stomach, and the look on my face was enough for my parents to know something was wrong.
We went straight to the local doctor where he felt my stomach and glands and told my parents straight away that he thought I had Leukemia. He sent us to North Shore Hospital. Once we arrived at the hospital they performed blood tests and other tests which took all day.
We were then sent to Camperdown Children’s Hospital where I went through many, many more tests. Dr Stephen told my parents what type of Leukemia I had which was Acute Lymphoblastic Leukemia or in short (ALL).
Survival rate for ALL at that time was only 30%. And so my treatment began. Four years of chemotheraphy starting with a 6 month intense treatment of Chemo and Radiotherapy.
During my treatment, my mom and my baby sister Angela lived at the hospital with me. I was in one cot, Angela was in another cot and Mum was on a stretcher bed in between. My dad came in as much as he could to see us all but he was looking after our corner shop.
Before I started any treatments, I had to have a blood transfusion and there would be many of these over the years. I was woken every four hours to have treatment of needles and drips. By the time they were finished and I went back to sleep I only got around half an hours sleep before more treatment.
Every type of drug had a side effect. My hair started falling out within the first two weeks. One drug affected my legs by making them weak so I could not walk. One making my urine go red and burn, another causing multiple ulcers on my lips and inside my throat, meaning I had to drink through a straw.
I had three weeks of radiotherapy to the brain as chemotherapy does not reach the brain and the central nervous system. During the radiotherapy, I was laid down on a steel bench with sandbags on my feet and hands and one across my forehead so I would not move. My parents were not allowed in the room while I was receiving the treatment. As you can imagine very scary for a child of two years.
Radiotherapy caused intense headaches which caused me to be up all night screaming in pain. After the six months intense therapy, there was a week on and week off system with the chemotherapy. So I was going everyday one week to receive treatment and then I would have a week off to let my body recover.
On the Monday of treatment, all the children would have blood tests to see if they had relapsed or if they were still well enough to continue treatment. The doctors would walk down the hall, call a family and tell them whether or not their child was going to live or die. Meaning, if they were still well enough to carry on with treatment or had relapsed (that the cancer had returned).
Then the doctors would give them the next alternative, which would be a bone marrow transplant if their child had relapsed. One by one the families would move on from the treatment room as some children relapsed.
After two years of treatment we were told that the scientists had decided that the forth year of treatment seemed to make no difference to recovery or relapse and so they would drop the treatment to three years.
After the three years of treatment, I had to go onto a maintenance programme. Which meant the treatment had stopped but I had to have blood tests starting from weekly to monthly. After those three years, I was considered to be in remission. I was now five years old.
I had to visit the After Effects Clinic every year so the doctors could do blood tests. I would also see other doctors that I would need in my future, which got harder when Camperdown shut down and moved to Westmead Children’s Hospital.
Because I was so young and my body was just starting to grow the effects of the intense chemotherapy caused many, many long term problems that I will have to live with for the rest of my life.
The worst effect the chemo had on me is infertility. The doctors told mom and dad when I was little that there was a very high possibility that I may never be able to have children. Which has had a massive toll on my life as I love kids and always wanted my own, but there you go… After 8 years of IVF I decided that it was long enough and my body needed a break.
I have always been supporting the Leukemia Foundation, Westmead Children’s Hospital and Canteen. I join in the Worlds Greatest Shave every year but of course I color my hair as I have already lost it once. I also liked hosting the Worlds Largest Lunch a few years ago.
In 2001 I joined a group of people and we did a three day walk from Wattamolla to Wollongong. I raised one thousand dollars for the Leukemia Foundation as I had a great sponsor from Bohemia Crystals.
I had a fantastic time at Light The Night at St Marys in the city in September 2012. It was a great night and it was awesome to see so many people there supporting such a great cause. I also went to Light The Night at Cronulla as my sister has described above.
St Marys Light The Night
I hope to do more fundraising in the future and get this terrible disease cured…
- Lisa
Another dear friend of mine Shannon, is currently undergoing chemotherapy after being diagnosed with Hodgkin’s Lymphoma, July this year.
Shannon not long ago proposed to my beautiful best friend Rebecca. I have not been so excited since my own engagement I can tell you. Here is his story:
My Story began in April 2012. I had no more than a light cold and was having a feel around my neck to see if my glands were inflamed. I felt a couple of bumps at my collarbone which were a bit unusual, but not sore, and couldn’t figure out what it was. I thought they may be normal (ha!) so let it go for a while in the chance they just disappeared.
Well they didn’t disappear, so off to the GP I went, which just like most males, I rarely do. The GP said the lumps appeared to be lymph nodes, so referred me off for an ultrasound and a fine needle biopsy. The ultrasound showed some quite sizable lymph nodes at the base of my neck, and some other smaller ones that I couldn’t feel. The biopsy results came back as skeletal muscle tissue which I suppose showed that the Doctor that did the ultrasound had hit the wrong spot.
The GP wasn’t overly concerned, saying the lymph nodes were probably just a reaction to an infection. Blood tests didn’t suggest anything unusual. Rebecca insisted on another opinion and we were recommended a head and neck surgeon. The surgeon said the first biopsy was a concern, so did another which came back showing it favoured an inflammation, but Lymphoma couldn’t be ruled out.
The surgeon then said he needed to take a lymph node out to test it properly. A couple of days in hospital in July and a 10cm scar on my neck later, and bam, I had my answer. It was Hodgkin’s Lymphoma.
I was shattered. I was at work when I got the phone call from the surgeon. I rarely lose my composure at work, but had a bit of a heart to heart with some of my close colleagues. Rebecca was a mess. I didn’t know how it could be as I felt normal, but slowly the pieces of the puzzle started to fit. I had been getting a few sweats at night, which weren’t really unusual, but now they seemed to occur more often than normal. The other thing I then realised was that when I drank alcohol I got a weird pain in my shoulders, which I couldn’t work out. It wore off after a little while and life went on. I had a persistent cough and itchy skin, which dated back to 2011. It turns out the sweats, pain when consuming alcohol, a persistent cough and itchy skin are four symptoms of Lymphoma.
I was referred to a Haematologist at Prince of Wales Hospital, Dr Tim Brighton. The Haematologist rechecked my diagnosis and confirmed it was Hodgkin’s Lymphoma. Hodgkin’s Lymphoma is said to be one of the more treatable forms of Cancer, which I suppose gave me some consolation. Dr Brighton said the focus of my treatment was to cure me of the Lymphoma.
He referred me to the Department of Reproductive medicine at Prince of Wales to save some sperm just in case my treatment left me infertile. I have 31 straws of little me’s saved for another day…
I needed to have a PET scan and a CT scan at Royal Prince Alfred Hospital to determine the extent of my Lymphoma. The scans showed nothing unexpected, I had Lymphoma in my neck and chest. I was staged at 2B. This meant I have two affected lymph node regions and I also had symptoms (the night sweats).
After running to the hospital for tests over the next week or so, I finally went in for my first dose of chemotherapy on the 16th of August. I had another scan that morning, then a bone marrow biopsy, where they take a sample from your hip. Well that was one of the most uncomfortable things I have had to endure. I was on my side and had a Doctor pushing the needle in my hip from the back and a nurse pushing from the other side. I had one of those green whistle things to suck on (Penthrox or something similar). I was talking to the Doctor and she said if I can put a sentence together I was going to be in all sorts of drama when she stuck the needle in so I had to breathe on it harder. When that stuff kicks in it really hits the spot.
After that it was time for the anti nausea drugs, then the chemo. That was pretty uneventful, one of the drugs turned my urine a sweet shade of pink! A few hours later though and I was feeling pretty ordinary.
I’m on a clinical trial which is testing a method of treatment that uses traditional ABVD chemo, then escalates it to BEACOPP chemo (which is the typical treatment in Germany and some other countries) if the ABVD is ineffective after two cycles (two months of fortnightly doses).
A few days after my first dose and I started noticing the effects of the chemo. I was feeling quite drained energy wise, and slept way more than usual. It made me feel like spewing every now and then. On a better point, Dr Brighton said the physical changes would become quickly apparent even after the first dose, so thankfully the night sweats were gone.
My second dose really knocked me down. A few days later and Rebecca was driving me to hospital thinking I was in the middle of a heart attack. It turned out I had a reaction that gave me Pericarditis, an inflammation of the sac around my heart. Off to a Cardiologist, and some more tablets and that seems to be under control.
After the second dose, I found a few stray hairs on my head and it didn’t take much to pull them off. I tested a few more hairs and they pulled out easily, so off to mum’s to have it all shaved off. I didn’t think it would bother me, as I didn’t have a great head of hair, but it was quite emotional. Poor mom was in tears shaving away.
Fast forward to October and I had two cycles (four doses) behind me which meant I had another PET scan to see how my Lymphoma had reacted to treatment. The scan showed I had reacted well. There’s now no uptake of the radioactive substance they inject that highlights the abnormal cells. We were very happy about that.
The clinical trial I’m on meant that instead of going on a more intense chemo regime if my PET scan was bad, I was randomised to drop one of the drugs that can give long term lung damage.
After that scan, it gave me a little bit more of an idea of where my treatment was heading. It still wasn’t without difficulties. I had a tooth infection that ended up with the tooth being extracted as my immune system can’t fight infections. I have a clot in my arm from the chemicals, and I’m bald!!
So, that brings me to today. I still have a couple of months of treatment in front of me, which means I will finish in mid January 2013. Thankfully I have the strength and support of my friends and family, and of course my little fiancé Rebecca guiding me along the way.
- Shannon
So as you can see, it meant a lot to me to be able to participate and donate.
It was a great night. The whole thing being organised by a year ten girl from one of our local high schools, whose friend had suffered Leukaemia when she was little. This courageous girl took to the stage to briefly tell her story and I think I can safely say, you would have been hard pressed to find a dry eye in crowd.
Another speaker, the father of a little girl who has not long ago been diagnosed, told their heart-wrenching story.
There was entertainment, food and drinks for sale, raffles and guessing games, all the money going to The Leukaemia Foundation.
Another girl from the same school took to the stage to shave her head, after which they announced that she had raised $30,000 online for the foundation. Amazing!
Photo credit: Lisa Bouveng
Photo credit: Lisa Bouveng
After the entertainment and speeches it was time to light the night!
We lit our lanterns and walked together along the esplanade, with the ocean by our sides, our lanterns an amazing sea of white, blue and yellow lights.
The lanterns were for sale for $20, or if you donated $20 or more, either online or on the night, you could show your receipt and get one to carry to. White lanterns are to reflect on your personal journey with blood cancer, blue to show your support for others, and yellow to remember a loved one.
It was such a wonderful night. I think you would have a hard time in today’s society trying to find someone not affected by cancer of some sort. Whether it is a friend or family member, or at least a friend of a friend, cancer affects so many peoples lives.
Any money raised goes such a long way to making a difference to the lives of those suffering, or to help with improving treatments and finding a cure.
According to The Leukaemia Foundation’s website; more than 3200 people are expected to be diagnosed with a form of leukemia this year – that’s equivalent to 8 people every day.
More than 5000 people are expected to be diagnosed with a form of lymphoma this year- equivalent to 13 people every day.
The Leukaemia Foundation is the only national not-for-profit organisation dedicated to the care and cure of patients and families living with leukaemia, lymphoma, myeloma and related blood diorders.
No person should ever have to go through such a thing.
If you wish to donate you can here. No matter the size of your donation, it is so true that every little bit helps, and it all adds up.
