Wawa ~ my princess, my queen and my life is a chirpy and bright 8 years old girl. She was being diagnosed for Maglinant Rhabdoid Tumour on 2015’s Boxing Day.
Yes.. On Boxing Day, a round solid “golf ball” was found at her right neck, area below her ear lobe. My nightmare begins….
Maglinant Rhabdod Tumour is a rare and aggressive cancerous Tumour normally found at the kidney or brain area. Hers? Found on the neck. Yes! First case in Singapore.
Just to get the diagnosis right, she has gone through a series of scans (MRI, PET, CT, Ultrasound, X-ray, Bone, Heart, Ear), Fine Needle Analysis, Surgical Biopsy, Blood Test under the care of a team of dedicated Senior Consultant from KKH ENT & Oncology.
What to expect (Family Conference 1)
We as her family members will have to go through family conference arranged by the medical team. Me? All of sudden I have got so many authorization forms (I called them autographs) to sign.
- Prepare your sets of questions prior your meeting session with the experts. Bring a pen and a notebook to jot down notes
- Stay calm to meet the team of doctors in charged and assigned social workers
She has been given a project plan. A project with 9 cycles of chemotherapy, a surgery (Performed by a team of Professors and Senior Consultants from the Anthestic, ENT, Plastic, Neurology, Oncology) and sets of radiotherapy
Insertion of Port-a-Cath
Before any treatments can be given, all cancer children undergoing chemotherapy will need to insert a port onto their chest right below their shoulder.
Think of the positive.. I carried her and we laugh it out while walking down the aisle to the operating theatre. As it was our very 1st surgery though we’ve done biopsy, the doctors and the nurses started introducing themselves and the environment making it less stress and friendly in the operating theatre. Slowly as she laid on my arm with the gas mask attached on, she fell asleep in seconds. I hesitantly left the theatre with tears.
The overall procedure including recovery from anesthesia takes 3 hours.
Gently reminder ~ Do not give solid food right after the surgery. If they complain of hungry, just like my wawa.. Seek permission from the nurses to feed them sips of Warm water. Nurses will be there to guide you.
Chemotherapy
Soon after the operation, she’s able to talk and smile, not complaining any pain!
Doctors came in, accessed her port to hook up hydration drips. In no time, her first packet of chemotherapy begins.
We keep our fingers crossed.. Thankfully there were no side effects..
I believe different diagnosis would have different treatment procedures. Clear your doubts with the professionals.
Wawa’s started her first chemo before any removal surgery is because
- The tumour was too big and it’s location was too closed to her facial nerves
- The Tumour seems to be growing too fast overnight giving her really bad headaches causing her to bang her head hard on the bed, screaming and yelling.
- To contain the spread of maglinant cells and hopefully to shrink the “golf ball” as much as possible for easy surgical removal at the later stage.
Amazingly on the 2nd day of her first set of chemotherapy, the Tumour shrunk significantly.
Slowly days passed by and here we are in the 2nd cycle of the chemotherapy. Hair starts to fall. I began reassuring her to say that it’s okay as the naughty hair are going gone. Pretty and clever hair will soon pop out.
Smiles continues…..
Warmth by the nurses led me on during countless sleepless night in the hospital….
What to expect (Pre-Chemotheraphy)
- Pre-admission procedures such as height & weight, temperature taking, blood tests and/or urine tests are done to ensure the child’s body is in good condition
- Children will be made to implant port-a-cath onto their right or left chest. This is being done by a 2 hours short surgery procedure. Don’t be surprised if pre-chemotherapy procedure starts right after the surgery.
- Pre-hydration will be given before the actual chemotherapy begins. Chemotherapy will also end with at least 24 hours of hydration.
What to expect (Post chemotherapy)
- Neutropenic Fever – This is very
- common due to low neutrophil count. Body temperature above 38°C must seek immediate attention at the A&E
- Vomiting, diarrhoea, constipation – Usually anti-vomitting will be given. However if symptoms worsen, head straight to the A&E
- Lost in weights
- Low count in white blood cells, red blood cells and platelets – Usually if they’re low in blood count. Their lips will be pale and they will feel lethargic. There is a minimum threshold the doctors will take into concern before performing any form blood transfusion. Be reminded to inform doctors if your child is prone to any allergic reactions. Anti-allergy medicine may be prescribed prior blood transfusion.
- Drink lots of water.
- Keep out of crowded places and ensure top notch personal hygiene.
Knowing the treatment process, getting yourself involves makes you grow your medical knowledge and train your mind to stay cool.
What to expect (Family Conference 2)
After completing 5 cycles of chemotherapy, the Head of this surgery project told me that even if wawa is accepting the chemotherapy well, Tumour shrunk, the active cancer cells are still there.
Hence, they gave me project plan 2 – SURGERY! A 30 hours long marathon surgery (Performed by a team of Professors and Senior Consultants from the Anthestic, ENT, Plastic, Neurology, Oncology).
- Prepare your sets of questions prior your meeting session with the experts. Bring a pen and a notebook to jot down notes
- Doctors being doctors. Imagine, I was in the room with my dad facing 5 Senior Consultants from the ENT, Onco, Plastic, Neurology and Anesthetist team, and 2 social workers who are making sure I don’t freak out. They will be very honest and blunt telling you to prepare yourself for the worst.
- Get someone whom you trust to join you in the discussion
Well, let me share with you on my experince on the most horror decision I have to make. They gave me 2 difficult options:
- If I do not agree to the surgery procedure, she will be left with 6 months to live.
- If I were to agree to proceed with the surgery, success rate is only estimated to be 70%.
Being left with this kind of option, what would you do if you were me. My thinking process told me this… She was being brought to earth by me. It is not fair for me to not give her a chance to live. A chance.. Yes a chance to live!! So without much delay, I took up my biggest responsibility and guts to agree to the procedure.
Luckily, I managed to calm down and stand firm on my decisions made.
The Marathon Surgery
Held her hands and wheeled her into a brightly lighted operating theatre accompanied by her favourite soft toys and OT nurses dressed in gowns followed by a count down from 10 to 0 after being injected with anesthesia. Off she goes into dreamland filled with Disney cruises and Princess fantasies.
“”南無大慈大悲观世音菩萨”
Our prayers to the magnificent buddha above are being heard.
With much highs and lows, she has successfully fought the 30 hours long marathon surgery making it the longest children marathon surgery in KKH.
Good news – The tumour has been taken out & she survived with all facial nerves preserved.
Neutral news – Her speech will be soft. Her pronunciation will be unclear. Her legs will be weak. Due to poor swallowing ability, a NG feeding tube will be inserted from her nose down to her tummy.
Bad news – She has permanently lost her hearing of the affected ear.
Whatever it takes, the surgery recovery process ended with a month of hospitalization stay without any tears in May 2016!
NO TEARS AT ALL!! And with praises like “Best loveable patient” given from the team of doctors. I am very proud of her and I take my hats of her!!! I’m grateful to all the Doctors and Nurses from ICU, HD ward, Onco ward and therapists from physio and speech.
Next set of treatments & series of scans (such as MRI, PET, CT, Bone, Heart, Ear) continues….
And the report shows ALL MARGINS ARE CLEAR! NO VISIBLE CELLS ARE SEEN!! 🙂 🙂 🙂
CCF keeps them buzzing with FUN
Wii time at the CCF KKH Playroom
Night shopping at Cheers
Cookies making class organized by CCF
What to expect (Family Conference 3)
So chemotherapy checked. Surgery checked. Cells cleared. What’s next then?
For a more thorough recovery approach, I was being arranged to meet the Senior Consultant of Radiotherapy at SGH National Cancer Center.
He showed us his 25 sessions of intensive radiotherapy. Each session last for about 10 minutes. They are being given 5 days a week, leaving the weekends to rest.
Tomo Radiotherapy
Prior radiotherapy, wawa have to go through CT simulation to make her mask and to plot the x-y axis for rays to shoot.
Radiotherapy begins….. The team of radiologist were superb! The assigned social worker from Children Cancer Foundation were fabulous too! They decorated the machine with loads of duckling pictures (Wawa’s favourite Ming Ming Duck from Wonder Pets).
Brave wawa went through the 25 sessions herself!
Note: Parents are not allowed during the radiotherapy procedure. Children whom are unable to stay still will be put under General Anesthesia throughout the 10 minutes.
Things to note (Before radiotherapy)
- Do not wash your skin with soap. Ensure the area is clean and moisturiser free
- Take note the child is not having any form of fever
Things to note (After radiotherapy)
- Apply doctors approved moisturiser (we used QV cream) onto the burned wound.
- After sessions of radiotherapy, the skin will looked like sunburnt. Do if the skin is dry, apply huge amount of moisturiser. Do not be tempted to scratch the itchy patchy dry skin.
- Drink lots of fluid to keep hydrated
- Talk to your radiotherapy for more assistance.
- Side effects includes lost of taste, unable to open her mouth wide, dry mouth
She’s done with all the chemo & radiotherapy
Some recommended care
- Practice good hygiene. I have requested to make arrangements with the in-house Dentist for regular checkups. She has recommended wawa to use tooth paste, mouth wash and mouth hydration gel from the Oral 7 series.
- Mild body cleansing soap (e.g. Cetaphil). Try not to use SebaMed Baby Bubble Bath. I realized that it will caused the skin to dry out.
- Moisturize the skin as often as you like using good non-greasy moisturizer (e.g. QV)
“Listen to the professionals.”
“Don’t dwell on things you have no control over it at all.”
There will be sunshine and rainbow after the storm. In early August, she’s able to get out to play with the NG tube removed and all chemotherapy and radiotheraphy done!
She’s enjoying herself at Sentosa in August 2016. Still masking on for viruses prevention.
September 2016 arrives.. She is finally back to her mainstream school annnnd she has being given the green light to eat anything she wants!!!
Upcoming next will be a list of monthly reviews with the Senior Consultants and scheduled scans.
Welcome to Mama Wawa Room 