My Pages

Emmas Story

28/09/2016:  Feels like so long ago yet also feels like it was yesterday that we laid our princess to rest.  It is still so raw.  We go about our lives doing what we normally do but there is never a moment where we are not thinking about Emma and wishing that she could be with us today. I feel so guilty sometimes when I find myself laughing and enjoying myself, I know that life goes on but sometimes i wish it didn't....... Will these feelings ever pass?  I don't know and I don't think anyone has the answer to that question either.  We just take each day as it comes, placing one foot in front of the other.....

18/01/2013: Today is the day that our angel is laid to rest.  May she fly high and free from anymore pain and suffering.

edited to add: funeral was beautiful, almost 500 people with most wearing Emma's favourite colour (blue) We laughed and we cried as we said goodbye.  My heart broke a little more that day.  Love you to infinity plus one little chickadee xxxxxx

15/01/2013: At 5.30am this morning our amazing, brave, gorgeous, generous, selfless, beautiful, strong little girl received her angel wings. So so sad and we are going to miss this little munchkin so so much.  Forever in our hearts miss Emma


Emma Jade Love
04/01/2000 - 15/01/2013
RIP our courages little angel

07/01/2013:  Christmas and New Years has come and gone.  It was not a nice Christmas this year knowing that we were watching our daughter celebrate what will be her last ever Christmas.  Well it is unless our miracle arrives.  I am thinking that this little girl is meant to get her angel wings early as she has great things to do in heaven. She turned 13 on Friday 4/01/13 .  It was wonderful to see all her friends at her party having a great time.   Emma was not well so was only out there for a short time and sat in the corner out of the sun.  I was so pleased that her friends got to see her and for Emma to see them and make memories.  We had the most amazing young man singing (Jordan Jansen) Do yourself a favour and visit his you tube page.  This kid is going to be a big star one day :-)
Emma, Ranger Rikki and Jordan

Emmas amazing cake 

The gorgeous Jordan Jansen


18/10/2012:  Had appointment with her oncologist to see what else we could do.  The answer was simply NOTHING.  He said that he cannot cure her.  There is a trial that we could try but Emma refused it as she does not want to spend her last few months being sick and feeling crappy from treatment.  Her oncologist told us that we may possibly only have 6 months left.  So sad yet we have not given up hope.

04/09/2012:  Emma started another round of radiation today to try and shrink the ever growing tumour. She is having two hits per day for 3 weeks.  Not looking forward to the burns and not eating.  She had a PEG put into her tummy yesterday under general anaesthetic (her 11th surgery) so at least she will be getting all her feeds.

9-07-2012:  After receiving two cycles of the Toepotecan and Cyclophosphamide Emma had an MRI which showed that the tumour had not shrunk.  It hadn't grown either which is a plus in some small way.  She was put onto Irinotecan and Vincristine which is given every day for 5 days with a two week break and then repeat the process.  She has had one dose which went ok without too many side effects but both Stuart and I agree that the tumour appears to have grown.  I am taking Emma up to her Oncologist on Wednesday to get him to have a look.  On Friday she went in for dental surgery.  The dentist gave her 2 crowns, removed 2 teeth and gave her 3 fillings.  Her teeth have been awfully damaged from all the chemicals and of course the radiation.  She was then put on Bevacizucumb and vinoralbein - nothing changed - tumour still there and still growing.


In July 2010 our 10 year old daughter was diagnosed with a tumour in her face/neck/head region.   This is not the sort of news any parent needs to hear.

Emma went in for surgery to remove the Desmoid tumour on the 9th of September 2010 and after a mammoth 10 hours we finally got to see her. Wowsers what a heart wrenching sight for this mumma.  I thought I was going to pass out seeing my precious little one with all those tubes and monitors.  The surgeons were hopeful that they managed to remove 99% of it. They did however tell us that it was a slight possibility that it would not grow anymore and just lay dormant. This was definitely our wish.....
She had her next MRI scheduled for beginning of November which would show us if it had grown.  In November we had her back to the hospital as her jaw was not healing where they had broken it during the first surgery so she went back under to have the maxillofacial surgeons repair it again.  Surgery was successful and we were home two days later (minus a few teeth and a little less jaw bone) the teeth and jaw will be fixed further down the track.
The 21st of December Emma complained of a lump appearing in her temple.  Emma went in for a biopsy the following day.
Results would not be available until after Christmas so at least we could get through Christmas in denial.
It is a tumour again....... It has grown back to 70% of its original size within 6 weeks.  They are not talking surgery this time as they would prefer to see if chemotherapy would work.  She was due for her first treatment on January 5th 2011, just one day after her 11th birthday. 
The treatment lasted for 8 weeks but then there was another lump (oh no here we go again) They took another MRI and confirmed that the tumour had now moved down into her cheek, which meant that the current chemo was not working Emma was admitted to the Royal Children’s Hospital where she underwent a stronger dose of chemo and would need weekly treatments for 6 months.
The chemo once again did not work so in August 2011 Emma was re admitted to the Royal Childrens Hospital where she underwent another 10 hour surgery to remove what they thought was a Desmoid tumour.  How wrong could they have been. Pathology came back telling us that it was in fact now a (Rhabdomyosarcoma) the big C word made its appearance.  They started her on chemo yet again and she also underwent 5 weeks of intensive radiation which left her in hospital for 10 days under heavy sedation due to acute mouth ulcers.  During these 10 days she lost approximately 8 kilos. She has been undergoing her third round of chemotherapy since September 2011.  This is a 43 week cycle and thankfully we are up to week 28 which leaves only 15 weeks J 
In total Emma has had 8 surgeries and is now onto her third round chemo (almost 2 years worth)
Let’s pray it is a case of third time lucky J

Throughout this whole ordeal Emma has remained strong although some days it has been hard on her.  She has her faith which keeps her going






Since writing this we have found another two lumps and had another surgery to remove more tumour.  The surgery just gone almost saw her loss as they accidentally cut her carotid artery. We are just very lucky that Emma has an amazing surgeon on her side.   We have just started yet another chemo this time consisting of Toepotecan and high dose cyclophosphamide. The hope is to shrink the tumour so that they can go in and do aggressive surgery.  The next lot of surgery will consist of removal of the left hand carotid artery......holy cow..... This has been such an incredible journey so far and one that is definately not over.



















25 comments:

Anonymous said...

Emma is such a brave girl, along with her family. This must be so hard for you.

Anonymous said...

Praying for Emma every day. Love you and STAY strong. By the way Jordan Jansen tweeted about this and I started to tear up when I read your story.

Unknown said...

I'm so sorry to hear about Emma, i think it so bad how so many people get cancer nowadays, my mum had cancer 14 years ago and was cured thank god, but not by chemo... A friend recomended her to try a natural substance called Graviola (It's a fruit) and so she thought she had nothing more to loose ( I was just 8 months old when she was diagnosed) and incredibly it worked and the cancer disapeared...My mum is trying so hard to spread the word about it, a friend of ours has also been battling cancer for 5 years and chemo and radiation hadn't done anything... He's been taking graviola for 2 months now and the doctors are 99% sure the tumor is dead! Please just look it up and buy some, it may save your daughters life... If you wish to contact me feel free at missbellaotoole@gmail.com . I hope all the best for your daughter and your family. Love Bella xx

A Geisha In A Past Life said...

We, the rest of the world, are praying for her. Please stay strong. God will never leave you.

Melody said...

Have you heard of Stanislaw Burzynski? I saw a documentary on him once and it was amazing! Please look him up! I really do recommend this. http://www.burzynskiclinic.com/burzynski-clinic.html That's the link to his website. Praying for her <3 Sending my love and thoughts.

Anonymous said...

Don't give up hope. God can do ANYTHING. I've seen many miracles of people who've had horrible cancer such as stage 3 brain cancer that are now cancer free. I'm not trying to give you false hope. I just believe that God is bigger than anything we can ever imagine. I will pray and have everyone I know to pray for your daughter. Prayer works wonders.

Kristyn

Anonymous said...

I'm praying for her, she's so pretty and I really hope she gets well, because miracles exist...i'm so sorry for my english, I know it is not so good because that is not my language but I try to write it the best I can, i'm a 15 years old mexican, and I really hope she gets well :c <3<3

Anonymous said...

Praying for Emma every day. Love you and STAY strong. By the way Jordan Jansen tweeted about this and I started to tear up when I read your story.

Anonymous said...

Sending positive thoughts and prayers your way .

Anonymous said...

Emma, I hope our collective support and prayers will bring some measure of comfort to you and your family. It breaks my heart to know that you have endured so much at such a young age, yet the courage you've demonstrated is truly inspirational.
Your family and friends must be very proud of you..I know I am! I will continue to have faith that God will provide a miraculous cure that you so desperately deserve! Please don't lose hope

Michael..

Anonymous said...

Emma you are in my prayers. Forever and always. <3 You are such a brave, young girl. You are beautiful in every single way. God bless you. xx

Anonymous said...

Wow she is amazing. ♥ Praying for her and your entire family xoxo

Unknown said...

Stay strong <3 My heart goes out to Emma and your family. xx

-Peggy

MissDvgm_Biebs said...

I believe in miracles and god.believes in Emma #headstrong forever praying for you <3

thanks Jordan for tweeting this, all of out prayers going to Emma.

Anonymous said...

Thinking about you all the time and prayers are with you all xxxx

Unknown said...

I'm really sorry to hear about Emma. She's such a beautiful girl, it must be so so hard for you all. Whenever you feel down just remember that she's now in a better place, enjoying a new life up there :) she's still with you, and you'll see her again one day! I hope all the best for you and you family. Stay strong, try to keep a smile on your face. I'm sure it's what she would want :) God bless xxx

Unknown said...

Leanne & Stuart. Words cannot express how deeply sorry we are to hear of your loss. My wife & I do not personally know you or even the beautiful Emma, but my son knew her and said how wonderful she was and how much of an inspiration she was. He so enjoyed the party and of being with her at that very special time. Our family is praying for you all at this extremely tough time, and I know for me, you will be in my thoughts. God Bless Emma, and God Bless you all. xxxxx

Dee Buchanan said...

I feel guilty that I have allowed business to keep me from staying current with you. I am sooo sorry for everything that you have gone through, and for the loss of your precious daughter. I am thankful that she is no longer suffering. I hope that you can find comfort in that.

Through all of this...remember that God knows our weaknesses...he gives us room to grieve, and room to grow...I just want you to know, that HE loves you so very much...even when it may not feel like he does...and He is there to carry you through this extremely difficult time.

Leanne...were they correct in their original diagnosis with desmoid tumor? I have heard that desmoids can change into cancer...that's what our doctor told us...just curious if first diagnosis was correct and if it did change, or if they were wrong to begin with.

kath barry said...

Leanne, Stuart and family....
it fills me with unspeakable terror to even think anything would happen to my children or grandchildren, how you have stayed strong through this incredible but heartbreaking journey is a credit to your faith and strong family bonds - which I have been lucky to witness personally I have gone through your entire blog and yes it broke my heart to see the hospital photos but I love the other photos which show a beautiful young lady who will forever be in your hearts and minds. It is ok to have bad days and believe me they will occur - let them happen as this is part of the grieving process. I sit at my biological fathers grave and have talks with him of all the thing I would have liked to have known and done with him - crazy some think but believe me it helps....
The Poms send all their love and strength to you all..... xoxoxoxo

Lizzyc said...

I read this and again I break down in tears..I have followed your blog for quite some time now and remember reading about the awful discovery of that lump... Your brave girl, what a journey for you all... I will continue to pray for you all...

Unknown said...

Dear Leanne, Stuart and family,
Words are not enough to express my condolences. Now that I have children of my own I cannot begin to comprehend what you have been through, yet you have also inspired me with your strength throughout.
I feel privileged to have know Emma briefly as a baby.
Thinking of you
Shane Pilkie

Anonymous said...

I can't believe that Emma's story is over. She was a beautiful girl. I've followed her story and I'm left in complete shock by the news. I will miss her so much. Love all the way across the ocean from America.

Em said...

RIP Beautiful Emma. My daughter's favourite colour is blue too (and aqua- which she has loved since seeing a beach and asking what colour the water was). I'm so sorry she isn't here anymore with you all to make cupcakes, have sibling rivalry moments with her brother and smile that infectious smile. May your memories of Miss Emma never fade until you see her again. xxoo

Anonymous said...

Hi, I just stumbled across your blog. So sad to hear of Emma's passing, only the good die young. Just last year one of my friends passed away after suffering through 2 and a half years of cancer, she was 15. I hope that you and your family are coping and that you keep strong. She was a brave person to have gone through all those problems. Best wishes

Emma x

Bureighbuddies said...

Hi Leanne - you may remember seeing me at Kaisercraft Robina events - the most recent being the Punch workshop. Take heart from the knowledge that Emma will have been with you both on your 4wheel driving holiday and enjoying it with you. She will want you to become happier (as you are able) and to concentrate on the good times she shared with you all. I've just finished reading "We are their Heaven" by Alison DuBois as part of my own journey of loss and I believe that those who have passed are able to spend time with us as they choose to. Look for signs of her in favourite songs you shared or overwhelming times and know that she is with you. I am a Christian but believe that this is very possible. Take care of yourself and children but mostly take care of you and perhaps we will chat at the next time we meet. Gail