Charisse my daughter turned 20 this year in March, we celebrated with friends.......Its been a long long 4 years living with this disease ..
For those of you who dont know CC as she like to be know was dx way back in 2009 when she was just a 16 yr old school girl.. By the time 2009 had finished she had 5 cycles of ifos and epi ,the first of her lot of chemo..
2010 started with radiation then she had her 17 birthday followed by the surgery in April. Most of the rest of that year , she learnt how to walk on crutches and discovered she could like herself again.. you see when the cancer was removed so was most of the side of her hip .. Crutches permenatly became her new way of getting around
November that year the first lung met appeared slowly followed by met 2,3,4,5, which through feb, march 2011 in which she had vats for .. May also of that year she lost the left bottom lobe to an extra large met...
She became well,, and after getting used to bits of her lung missing, she found she could sing again, a favorite thing of her as now she couldnt dance anymore, her hair had grown and now a teenager of 18, she had dyed blue and red streaks throught her beautiful silky locks , she was looking and feeling good,
Make a wish contacted her and she did her first public speech , it was awesome , so much so M-A-W wanted to make her a young ambassador.. You see back in 2010 just before surgery her wish was granted and we as a family were flown to new york to meet hugh Jackman.. we live in Australia..
(Google hugh jackman . M-A-W and you will see her still... it was a truely magical moment in time, the wish showed her to believe anything was possible and it gave her the strength to get through)
Sadly before she had time to think, we discover she had multiple Mets, too many to count back on her lungs.
2012 started with Chemo, 5 cycles.......April that year she lost a very dear friend the first of many to come. .
Then the seizure began again, you see CC was dx with epilepsy at 15 , the seizure changed and became like nothing we had ever seen before, she took to running blindy through the house without her crutches.. trying to get away, crawling across the floor and breaking her nails, the third one luckily was only played out in her mind, but in each one she was trying to escape , she felt someone was after her , you can imagine how distressing this all was to see, each one ended with her passed out on the floor, the doctors suggested PTSD..... then we discovered the first met to her brain........
Now this is where my last post on this site ended.
In june/July of that year 2012. chemo was stopped . and she had surgery to brain, the met was easy to remove, but by the time she was ready to start chemo again, nodules in the lungs increased.... chemo was again restarted, she had many stops and starts with it , problem after problems with her health, weight swung around the 39 kilo mark, seizure came think and fast .. you see as we found out Ifos after a long period of time can put small fliud deposits in the brain..
August that year , her left lung collaspe, chemo stopped again, she has a plureodisis done where the lung in glued back into place, a break again then chemo resumed ..., End of October chemo was stopped.......... By now CC was 38 kilos, and passed out so much through the last chemo that she kept the rapid response team busy..
In November it was decided to try Votrient, the Ifos was still keeping the cancers at bay, but CCs body couldnt handle it anymore..
I have heard so many good things about Votrient, that we felt it had a good chance of working........All through December CC stayed on Votrient , her body got used to it and it had a slight sign it may be working..........Then two days after xmas, when CC was finally out in the sunshine, enjoy time with the kids in the street , the second lung collapse happened...second plureodisis..
She spent new years eve in hospital.
2013 started, CC stayed for a further two weeks in hospital, before they let her home.... Then 3 days after she came home, she walk to the bathroom and came back , grey and sweating, breathing was shallow, rushed to the local hospital ... After x-ray and scans the doc thought blood clot then fluid and then they tranferred her up to our usual hospital in the city and they rescanned again... It was a week end, so the weekend doc down in emergency didnt know us and we didnt know them...... CC was then addmited into her usual ward....... the weekend doc came round early sunday morning before I had got there and told her.........sorry nothing more could be done, a nodule had completely block off the whole left side of the lung, she now had only the side to use which had only just been glued...................How my heart ache when she rang me crying , I couldnt get there fast enough....... The sadness was overwhelming A family meeting, was called for the next day and my partner, cc dad was coming up at 12.00 so I slept over at the hospital with her....... How silently I mourned, watching my baby struggle to sleep. .. I woke up out of a nightmarish dream and made myself coffee and took a walk........... tears streamed down my face, I didnt care who saw, I was a mum hurting in pain like you couldnt imagine......... I took some time, then dried my eyes and went back into the ward....We had seen Palitive care the day before , so much on my mind as I wandered down the hallway.... The doc were doing their rounds, next mintue the doctor weres walking towards her room... CC didnt want to hear anymore, so I ran to beat them in....but they were already seated when I reach the door... The oncologist one of our very own....... simply started talking..He told how he had been with CC on this journey, knew of her courage and strength, and because of that, he thought radiation might be the go.......... How I could have kissed him, CC instantly sat up, the differnce it made to her....... By the time my partner came in we had hope ......... she started radiation that day, targetting only that one nasty nodule, by the end of the week she was off oxygen and colour was looking good. But she developed a pain deepwithin the tissue of her hip, scan were redone...That was february, she came home and made plans for her 20th birthday party for march...
The party was the best one ever , she started picking up health wise, even putting on a bit on weight, but the pain in her hip area brought constant tears to her eyes, she couldnt sit down and took to her bed...so ..Doctors thought, now that the lung were working, she could have radiation on her hip, to ease the pain..Votrient was stopped again...Its turned out the cancer is back about , recurrance around the hip area.......
CC has done 6 out of the ten radiation treatments, but last week her breathing was starting to give trouble and she was becoming breathless again .. I rang Palitive as we now have our own lady, she suggested up the Ordine, morphine for her lungs... Took her to the gp who thought he could here something .
CC had radiation the next day so I rang ahead to inform them....... the oncologist and paltive met us, a quick check and x-rays were done....... scan were need and CC stayed in for the night...........
On Wednesday the 10th April we were told........ the breathing difficulties were due to a bleed she seems to have had on the lung, she also has fluid is the bases of both.......... It also seem that the cancer has made a steady progression and her lung are nearly completely white............... There will be no more treatment........ the Votrient simply stopped working, it can also cause the lungs to have bleeds........The onocogist though she should continue with the radiation though to try and get rid of some of the pain and make her more comfortable.......... On the weekend the seizures started again, but this time with violent shaking, so unlike the quiet complex partial she has...... Monday we got down to radiation, it was a hugh ordeal getting her there, energy levels zip....... another seizure........ radiation postponed....... another surprise in store..... I ask the palitive doc whether he thougth she should have a brain scan, I explained I knew it wouldnt make a different to the outcome, but I needed to know........... Thats when I found out the cancer is back in her head.....................
Oxygen was delivered yesterday........
Today was a good day, no seizure, lots of pain relief and the oxygen has made a little difference she even came out of her room to watch her favorite soapy "Neighbours"
Charisse has given so much to fighting this disease, you will never meet anyone so strong, the amount of times she just bounced back, she has made many a young patient feel at ease , she amazes me.............She has just made a little video for the jimmy teens web site........... it should be up in a few weeks............ She has aways been my light, my laughter, and together as a family we will face what is to come........
Thank you for sharing. Charisse is a true warrior. She's been through so much. It must be very painful to watch your daughter fight this war. And I imagine it's difficult to keep hope alive. Please keep being strong for her!
this story has broke my heart such a brave young girl nobody should have to endure this disease at any time in their life but to read this story about it happening to a girl no actually a child because thats what she was when she first got it is just heartbreaking my thoughts and prayers are with you CC and your family. All i can say is she is an inspiration and a true warrior with the battle she has faced and all the hurdles she has over come to date xx
((hugs)) for CC, you, and your family.