And so Shanaya’s Journey with Ewing Sarcoma entered a new phase in 2018.
This would include 2 more intensive cycles of chemo with all the bells and whistles that go with it, major surgery or surgeries, and the possibility of maintenance chemotherapy – but at least the end is in sight…
Mommy and Daddy decided that because our Supergirl Shanaya the First had already slayed the first 4 intensive cycles of chemo and all its side effects like a true warrior princess, she could draw up a “Dream List” of things that she would really like to do, and they would try their best to make them come true.
January started off early with hospital admission number 10 since Shanaya first fell ill in April 2017 – in that short period of ten months, this poor little princess had undergone:
- 10 hospital admissions;
- 8 times in theater;
- Far too many scans, blood tests and doctors appointments;
- 5 months of misdiagnosis and ;
- 5 months of Chemotherapy
Then it was time for Cycle 5 of Chemotherapy, which started on 8 January, and scans for surgery assessment on the 11th January.
Two very happy parents got the results of the scans on 12 January and there were HUGE smiles all round – even the doctor was smiling. The CT Scan showed that both Shanaya’s lungs were clear and that there were no cancer mets.
Unfortunately with the good news came the bad as well – Shanaya’s arm cannot be saved and it will have to be amputated at the shoulder as there is too much damage.
With this news in mind and the last chemo cycle on 5 February, Shanaya’s parents had a lot of thinking to do as to the way forward.
A tentative date for surgery was decided on in early March, and that will be followed by 10 days of 30-minute radiation sessions and 7 months of maintenance.
With this weighing on their hearts and in order to clear everyone’s minds and de-stress a bit, Shanaya’s first Dream was about to come true, as promised….
Doctors gave her the go-ahead for a beach visit so that she could build the biggest sand-castle ever! The family managed to get away to the beach for four days – a short time, but a time that was thoroughly enjoyed by everyone.
Shanaya returned to hospital on 5 February to begin her Final Cycle of Intense Chemotherapy. Day 3 of 5 brought the last dose of Adriamycin (aka the red devil), VP16 and Isofomide – This would be followed by 2 days of Mesna.
On Day 4 things went a bit awry – Shanaya’s port needle came out and had to be re-inserted, which was a very painful procedure but this brave little princess soon wiped away the tears and soldiered on, donning a pretty dress and enjoying a delish breakfast.
Below is a post that Lee-Anne, Shanaya’s mother, put on her Facebook page and which we share with her permission to give you a glimpse at what the parent of a Child with Cancer goes through…
6 February at 05:39
To my baby girl
My heart is broken by the memories this journey has left us with, I pray you never remember all the horrible things mommy had to do.
What type of mother am I?
I was busy baking when you first screamed that dreadful night on the 14th April.
What type of mother am I that I wasn’t sleeping with you?
I said don’t worry baby they just going to make you sleep and when you wake up you will be all better.
What type of mother am I that I put my child’s life in a doctors hand?
The second time they put you to sleep I assured you again.
What type of mother am I that I let a second doctor fail you?
I went along with the diagnosis of osteomyelitis, researching, questioning when test results continued to show no sign of infection.
What type of mother am I?
Your arm swelled to enormous size and your pain was unbearable. I believed the doctors saying you are allergic to eggs and I changed your entire diet.
what type of mother am I?
A third operation with 18 days with drains connected into your bone then happened as the third doctor diagnosed you with a staph infection and new bone growth.
What type of mother am I as again I kept reassuring you through your pain?
Still nothing worked 6 months later and your arm kept swelling then on the 5 September a day that changed everything. The fourth doctor did an x-ray and he mentioned the horrible word CANCER.
what type of mother am I that my baby had stage 4 cancer and I didn’t know?
Your chemo journey began on the 20th September. Through this I have had to force feed you, hold you down, keep you isolated, press on your tummy while you vomited, comb your hair whilst it fell in bunches, shave your head, rip off your port plasters, treat your wounds, watch your skin peel off during hand, foot and mouth disease, hear you crying to sleep, watch your nails fall out, see you struggle but manage with one arm. Only to mention a few.
Honestly god what type of mother am I?
Now daddy and I have to sign papers to give permission to amputate your arm from the shoulder to save your life.
Again I ask you god what type of mother am I for allowing my child to endure such pain?
? ? ? ? ? ? ?
Lee-Anne, in our eyes you are THE BEST mother ever and we KNOW that you have done your very best throughout this journey fighting a terrible disease against which you were basically helpless.
The only thing that a parent can do in such a situation is to inform yourself about cancer, take the doctors’ best advice and stand by your child – and you did that in SPADES!!!
Both you and Shane did everything that was in your power as loving parents – you are both AWESOME in our book for the strength with which you have handled all of this – we know that it is not always easy and that you cry when alone, but trust us – that is completely normal and you guys have done well.
We are now counting down to the operation in which Shanaya’s arm will be amputated at the shoulder on 2 March, 2018.
The family is requesting that everyone “Light it up Gold” on Friday in support of Supergirl Shanaya the First, and that they post their “Light it up Gold” photos on her Facebook Page, Supergirl Shanaya the First battles Ewings Sarcoma
Click on this “Light it up Gold”image on the left and download it and use it as your profile pic on 1 & 2 march to show your support for Shanaya!
The Little Fighters Cancer Trust are, as always, right there beside you during this time, Shanaya, Lee-Anne, Shane and Unma.
We, together with our extended Little Fighters Cancer Trust Family of in excess of 13 000 members will keep you all in our hearts and our prayers and lift you up in your time of stress.
Shanaya, remember what that Unicorn that I sent you said:
There’s Magic inside you; Anything is possible;
Dreams can come true; You don’t need wings to Fly
It is Okay to be Different; and
Always believe in yourself even if nobody else does