This is my daughter Briarna with her American girl doll Mary-Ellen. This doll inspired her to start dreaming about a trip to America.
Briarna is 12 years old and has been battling Ewing’s sarcoma (a rare and aggressive bone cancer) since August 2014.
She has endured 34 rounds of chemo and 46 rounds of radiation in 44 months. The longest break she has had in the last 3 1/2 years is 6 months between August and January 2016.
Briarnas cancer started growing again in her lungs in January with 5 tumours showing up in her scans, she had targeted radiation to one of those tumours. That tumour is now non existent, which is fantastic, but over the 6 weeks after radiation the other tumours started growing and when she had more imaging done it showed that they had all increased in size and there are another 6 new tumours. That means she now has 10 active tumours growing in her lungs.
The doctors have now told us that they can no longer cure Briarnas cancer and everything we are doing now is to make sure she enjoys the best quality of life that she can.
We have been in Melbourne this week to see the radiation team at Peter Mac. They told us that they are planning on doing radiation to the largest tumour which is 8mm, but because of the proximity to her heart they are going to do it in 4 rounds over 8 days instead of 1 long treatment. The complications of radiation to her heart include pericarditis, which is inflammation of the lining of the heart, as well as inflammation to the lining of her lung.
Since arriving in Melbourne on Wednesday Briarna has had a review at Peter Mac for radiation treatment, a planning ct scan, she was admitted to the RCH through emergency on Thursday for a chest X-ray and review and today we have had an appointment with her oncologist and an MRI scan. It has been pretty full on over the last few days.
We have been planning a trip to take Briarna to America for the last 4 months, since she got her doll Mary-Ellen, Briarna had been talking about going to the doll store and staying in one of the hotels. She also wants to go and see a live taping of Ellen’s show and if we can get her pain under control a trip to Disneyland will be on the cards as well.
Our oncologist recommended today that we should make this trip as soon as possible. As otherwise Briarna’s pain may stop us from enjoying the trip as much as we could do.
Which is why we are now reaching out to you.
In the last few days we have been offered a lot of support to help make this trip happen and we are incredible grateful to each and everyone of you. Thank you for helping us make her dream come true.
We have set our target above what we need for the trip as Briarna has been very unwell over the last few weeks, we have had to take more time off work to look after her. We are ineligible for any support payments from Centrelink for 3-6 months after we both stop work. The last thing we want to worry about over the next few months is finances.
For those of you who don’t know Briarna this is a little bit of her history. You can also follow her page here https://m.facebook.com/supportbriarna
Briarna was diagnosed with Ewing’s sarcoma in August 2014 at age 8. We moved from our home in Burnie, Tasmania to Melbourne. She had 14 rounds of chemo, 31 rounds of radiation to her hip and 10 rounds of radiation to her lungs. We were able to move home with her in remission in July 2015. She was cancer free for 6 months before she relapsed the 1st time in 2 new spots in her pelvis. We moved back to Melbourne, and she endured a gruelling 14 months of treatment, during this time she suffered from many side effects and setbacks. She had 14 rounds of chemo and 3 more rounds of radiation. She finished chemo in May 2017.
Eight weeks after finishing chemo she returned to Melbourne for end of treatment scans and found out that she had relapsed a second time. This time to her lungs and spine. She had radiation to the tumour in her spine.
Briarna refused all IV chemotherapy and we opted for an oral option. We had to travel to Melbourne every 4 weeks to see her doctors and collect her medications. She had 6 rounds of the oral chemo.
Then in January this year the tumours in her lungs started growing again. The doctors offered us 3 treatment choices but when we weighed them up and compared them we feel we have made the best one for us as a family and the one that will give Briarna the best quality with the least amount of side effects
These were our options
1. Move back to Melbourne for an IV chemo that has a 50% chance of accelerating her cancer or making her better for a few months. We would be in Melbourne for between 2-6 months depending on results after her 2nd round.
2. Giving her an oral chemo at home that has side effects of extreme nausea and diarrhoea. Which would see us attending hospital frequently, along with dizziness, weakness, seizures, loss of appetite and hair loss
3. Radiate the spots as they grow in size.
Briarna refused all IV chemo back in June last year so we feel like option 1 isn’t really suitable especially considering the chance of accelerated growth. Option 2, whilst allowing us to remain at home will make her the sickest she has ever been while on chemo, it will also stop her from doing any activities and stop her from going to school and at the moment she wants to go to school and be normal. Option 3 radiation to the spots as they grow is the one we have decided to go ahead with.
She had radiation to the largest tumour a week later. A few weeks ago she had more imaging which revealed that the the tumour they treated was dead but the 4 remaining had grown, it also showed 6 new ones taking the total to 10.
They are radiating the largest spot near her heart in the coming weeks, they are doing 4 rounds of radiation which will take the total to 50.