Sophia's Sarcoma
Donation protected
Sophia Sarcoma Journey:
On Sunday the 28th of June 2020 our journey with Crumlin Children’s Hospital began.
After a slight fall at home & not liking the look of a bump forming on the inside of Sophias elbow, we attended A&E at 8pm to have it checked out.
After a very long night, we were sent home at 4am Monday morning with the request to come back at 7:30am to meet a consultant.
On Monday 29th of June at 7:30am - we met a fantastic Doctor, who admitted us to have the following tests done:
*An Ultrasound
*An MRI
*A CT Scan
On Wednesday the 1st of July, we were sent home for some well earned R&R to await the results.
On Friday the 3rd of July 2020, myself & Mark, got the news that no parent wants to hear, our 15 month old daughter Sophia James Downes has a malignant tumour growing in the bone & soft tissue of her arm.
Sophia James Downes was diagnosed with a form of cancer called
* EWINGS SARCOMA *
This is a rare & aggressive type of cancer that will involve an intensive treatment plan taking place:
*chemotherapy
*radiotherapy
*Surgeries.
Due to the nature of this cancer, we started treatment straight away.
On Tuesday the 6th of July 2020 - we had a Hickman Line inserted along with biopsys of Sophia's Bone Marrow & Sophia's Lymph Node under her left armpit.
On Wednesday the 7th of July 2020 - our 15th month old daughter Sophia began her chemotherapy.
Sophia's chemotherapy a VDC/IE program is on a rigorous schedule.
Every two weeks.
Sophia's IE Chemotherapy Sessions will result in her needing to stay in hospital for a full 6 days.
We are currently on day 4 (Saturday 25th of July 2020) of her first session of the IE Chemotherapy treatment.
However, along our journey the past 4 weeks (5 if you include the week of tests prior to our diagnosis) has been anything but smooth sailing resulting in Sophia spending a total of 5 nights in her own bed since her diagnosis.
Since our diagnosis we have banded together as a family to support our Sophia.
Due to Covid-19 however, only one parent (Sophia's Mammy Maxime) can accompany Sophia while she is in hospital. This has been stressful as we have a 12 year old & an almost 5 month old at home who I feel I haven't spent much time with the past 4/5 weeks.
I (Maxime) am currently on Maternity leave, which is due to end the middle of next month & unfortunately due to Sophia's diagnosis, I will be unable to return to work for the foreseeable future.
I also unfortunately don't drive (& Mark is waiting still to take his test - due to Covid-19 - this seems unlikely to take place before Christmas)
The cost of travelling in & out of crumlin by Taxi is crazy (40-50 euro one way) & as you can imagine public transport at this current moment in time especially with Sophia's diagnosis is out of the question.
We have looked to the Irish Cancer Society - who have been fantastic, however there are no drivers currently available to help us get in & out of hospital due to Covid-19
We have been lucky enough to have some help from family, but as we head into uncharted waters with Covid-19 on the rise again & into the autumn/winter this is unlikely to continue.
With more scheduled hospital stays in our future - along with the extreme likelihood & possibility of having to travel to Germany for radiation treatment, with surgeries down the line to remove the tumours in her bone & in her soft tissue, & further doses of chemotherapy after all of that, we have a long long road ahead of us.
We're looking for your support and generosity to help relieve the costs and expenses that coincide with such an unfortunate diagnosis.
Apart from travel & time off work to care for our daughter, the money raised on this GoFundMe page will also help with many of the financial aspects incurred in Sophia's treatment that are not covered, such as private medical therapies i.e Physical Therapies post surgeries etc.
As stated Sophia has a long road ahead of her.
It has been difficult watching her going through everything, watching her being scared at anyone coming into her room, even the play therapists.
But even with the most difficult of starts, we as a family are beginning to see flashes of her happy personality shining through again as she dances along to her music & her love of watching Jason Derulo on TikTok
I know as tough as this is & has been so far, we as a family will get through this & we will fight with & for our litte Sophia, our SoSo.
Please share
Support if you can
Say silent prayers
Love to all
Thank you
Maxime & Mark
On Sunday the 28th of June 2020 our journey with Crumlin Children’s Hospital began.
After a slight fall at home & not liking the look of a bump forming on the inside of Sophias elbow, we attended A&E at 8pm to have it checked out.
After a very long night, we were sent home at 4am Monday morning with the request to come back at 7:30am to meet a consultant.
On Monday 29th of June at 7:30am - we met a fantastic Doctor, who admitted us to have the following tests done:
*An Ultrasound
*An MRI
*A CT Scan
On Wednesday the 1st of July, we were sent home for some well earned R&R to await the results.
On Friday the 3rd of July 2020, myself & Mark, got the news that no parent wants to hear, our 15 month old daughter Sophia James Downes has a malignant tumour growing in the bone & soft tissue of her arm.
Sophia James Downes was diagnosed with a form of cancer called
* EWINGS SARCOMA *
This is a rare & aggressive type of cancer that will involve an intensive treatment plan taking place:
*chemotherapy
*radiotherapy
*Surgeries.
Due to the nature of this cancer, we started treatment straight away.
On Tuesday the 6th of July 2020 - we had a Hickman Line inserted along with biopsys of Sophia's Bone Marrow & Sophia's Lymph Node under her left armpit.
On Wednesday the 7th of July 2020 - our 15th month old daughter Sophia began her chemotherapy.
Sophia's chemotherapy a VDC/IE program is on a rigorous schedule.
Every two weeks.
Sophia's IE Chemotherapy Sessions will result in her needing to stay in hospital for a full 6 days.
We are currently on day 4 (Saturday 25th of July 2020) of her first session of the IE Chemotherapy treatment.
However, along our journey the past 4 weeks (5 if you include the week of tests prior to our diagnosis) has been anything but smooth sailing resulting in Sophia spending a total of 5 nights in her own bed since her diagnosis.
Since our diagnosis we have banded together as a family to support our Sophia.
Due to Covid-19 however, only one parent (Sophia's Mammy Maxime) can accompany Sophia while she is in hospital. This has been stressful as we have a 12 year old & an almost 5 month old at home who I feel I haven't spent much time with the past 4/5 weeks.
I (Maxime) am currently on Maternity leave, which is due to end the middle of next month & unfortunately due to Sophia's diagnosis, I will be unable to return to work for the foreseeable future.
I also unfortunately don't drive (& Mark is waiting still to take his test - due to Covid-19 - this seems unlikely to take place before Christmas)
The cost of travelling in & out of crumlin by Taxi is crazy (40-50 euro one way) & as you can imagine public transport at this current moment in time especially with Sophia's diagnosis is out of the question.
We have looked to the Irish Cancer Society - who have been fantastic, however there are no drivers currently available to help us get in & out of hospital due to Covid-19
We have been lucky enough to have some help from family, but as we head into uncharted waters with Covid-19 on the rise again & into the autumn/winter this is unlikely to continue.
With more scheduled hospital stays in our future - along with the extreme likelihood & possibility of having to travel to Germany for radiation treatment, with surgeries down the line to remove the tumours in her bone & in her soft tissue, & further doses of chemotherapy after all of that, we have a long long road ahead of us.
We're looking for your support and generosity to help relieve the costs and expenses that coincide with such an unfortunate diagnosis.
Apart from travel & time off work to care for our daughter, the money raised on this GoFundMe page will also help with many of the financial aspects incurred in Sophia's treatment that are not covered, such as private medical therapies i.e Physical Therapies post surgeries etc.
As stated Sophia has a long road ahead of her.
It has been difficult watching her going through everything, watching her being scared at anyone coming into her room, even the play therapists.
But even with the most difficult of starts, we as a family are beginning to see flashes of her happy personality shining through again as she dances along to her music & her love of watching Jason Derulo on TikTok
I know as tough as this is & has been so far, we as a family will get through this & we will fight with & for our litte Sophia, our SoSo.
Please share
Support if you can
Say silent prayers
Love to all
Thank you
Maxime & Mark
Organizer and beneficiary
Nakita Maxime
Organizer
Mark James Downes
Beneficiary
