102 days in hospital
6 Admissions since her first discharge
34 Doses of chemotherapy with 35 more planned
Over 50 scans and X-rays
Over 60 blood transfusions
3 Major Surgeries
2 Minor Surgeries
3 Life threatening trips to Paediatric Intensive Care Unit (PICU)
6 Fracture with 8 casts
4 Feeding tube changes
½ Dose of Bisphosphonates to strengthen her bone
Countless pain relief medication
This is her Story.
Grace was unwell from the middle of November 2019 aged 11 months. We had been over and back to our local medical centre many times between November and January. We knew something was wrong with her but didn’t know what. Her finger nails were dented, she was throwing up, had continuous low-grade fevers and later on loose nappies and projectile vomiting. We noticed she didn’t want to crawl around anymore and when she walked from one end of the couch to the other she was tired. Then when changing her nappy, I noticed 3 pea sized lumps in her groin. We went back to the doctor and requested an ultrasound.
21/01/2020 Grace was really ill and was sent to Westmead children’s hospital via ambulance.
We were in emergency for a couple of hours before we met an oncology consultant. I knew oncology meant cancer and she confirmed it was suspected Grace had a tumour on her liver.
They explained to us that Grace would have a General anaesthetic for the scans so they could view everything properly. She would have an MRI and a Chest CT. They told us it would take up to an hour/hour and a half hour. I was allowed to have Grace on my lap as they gave her the GA. When they administered the GA Grace’s lips started to turn blue and they rushed Adam and I out of the room. Two agonising hours later her anaesthesiologist came out to talk to us and told us to sit down. He explained to us that Grace’s tumour was a lot larger than they were expecting. He said she had taught herself how to breathe around the tumour and when she had the GA her body lost that awareness so the tumour flopped back on her lungs and they collapsed. They had to intubate Grace to help her breathe and she was on her way to the paediatric intensive care unit for specialised care. He explained to us the cancer wasn’t just in Grace’s liver but had spread to other parts of the body.
A team explained to us that Grace’s tumour was double the size of their original thought and had blocked her Inferior Vena Cava, was on its way to her kidneys and at some point, some of the tumour had broken off and travelled into Grace’s lung. She also had blood clots or little tumours throughout her lungs- pulmonary emboli. She also had what they couldn’t decide was a blood clot or tumour in her Pulmonary Artery. The tumour on her liver was so big it had started to sit on and squash other organs. Her right kidney is smaller because of this. They found evidence of cancer in her stomach- they found evidence of cancer in basically all of Grace’s torso. They told us Grace’s tumour markers called AFP markers were so high that pathology couldn’t actually quantify it. They put a figure of 2.8 million on it to let them know the severity of Grace’s case. Both doctors told us in their 25-year career span they have never seen AFP markers so high. Grace’s tumour was so big and unstable they couldn’t take the risk for a biopsy as he was afraid it would cause the tumour to rupture and Grace would be in a lot worse condition than she already was. They are almost 100% sure it is Hepatoblastoma. A rare cancer that effects only 1 in a million children and because hers was so big it has put her at high risk. They weren’t even sure of her survival rates because they had never seen anyone like Grace before. They would treat as Hepatoblastoma but won’t confirm it until Grace is well enough for the biopsy. Grace would need emergency chemotherapy and it had to start that night.
They also couldn’t put a central line in as they didn’t know what the tumour would do if they inserted it in her chest so she had to have a femoral line put in her right leg. It connected into the vein that was spreading the cancer throughout her body- the Inferior Vena Cava. The chemo therapy would require double maintenance so Grace would retain a lot of fluid. The chemotherapy called Cisplatin would cause hearing loss. They spoke to us about clinical trials and how a case like Grace’s could really help future studies. We agreed, we signed up to studies for research purposes and clinical trials for the chemotherapy to help others.
I asked if Grace would die and they said that it was quite possible she wouldn’t make it over the next 24 hours. We were told if she made it through then, the next 48 were crucial and if she made it through the 72 hours then we had hope, a fighting chance. Thank God Grace made it through the 72 hours.
After 7 days in PICU we were transferred to the Oncology ward. At the end of cycle 1 Grace’s tumour markers had fallen enough to show us the tumour was dying so a plan was made to insert her central line. Grace was so very quiet and scared all the time she holds onto us and her belongings so tightly. The nurses are showing me how to take her blood pressure so they have to touch her minimally. She has begun receiving many blood products. Grace has also stopped eating and drinking and has been on TPN since PICU.
One day we noticed Grace was irritable, had a high heart rate and was silent crying a lot. They saw our concern and sent her for a scan. The scan revealed that the tumour had ruptured and Grace was bleeding internally. She had to have emergency surgery to stop the bleeding. She would have to go back to PICU afterwards. After surgery three Doctors come to see . They tell us that we need to link in with Cardiology and let them know about Grace. I asked why and they explained that the tumour/clot in her pulmonary artery was in such a dangerous place that should it move it could cause Grace to have a heart attack/ cardiac arrest and then it was game over she can’t come back from that. We spend 3 days in PICU then back to oncology.
When things had settled down again we mentioned we were concerned about Grace’s communication skills. She had stopped talking and wasn’t really making any noises only when she cried. She was referred to the audiology clinic. Here we learn that Grace is suffering from severe to profound hearing loss as a result of Cisplatin Chemotherapy. She must have been so scared losing her hearing and not knowing what was happening to her. Grace is soon fitted for hearing aids.
In March Grace has Norovirus. She is moved to an infectious oncology ward. This is where we begin our journey of isolation. The nurses play with Grace they act silly in their PPE pretending to be ducks. Grace starts laughing and playing and eventually begins to trust the nurses and let them examine her. This eventually extends to the doctors. After the end of cycle 3 we are told it is time for Grace to have surgery planning scans. Grace's case is quite complicated. They will remove the entire right side of her liver, resect one of the uncontaminated hepatic veins from the right side of her liver to the left side of her liver, completely remove her IVC while trying not to damage her new system, explore the renal veins and resect some of her diaphragm that had been contaminated with tumour blood when it ruptured. He said he would leave the lungs and pulmonary artery for now because she definitely would not survive such extensive surgery. After 15 long gruelling emotional hours we get Grace back. She had survived but again we were back to 24 hours, 48 hours,72 hours. Grace fought her way through it all. After Surgery Grace’s AFP markers were 61. Her diagnosis is Hepatoblastoma with metastasis or can be known as Metastatic Hepatoblastoma. We were in PICU for 3 days then moved to the Close Observation Unit (A branch of PICU) where we stayed for a further 9 days as Grace recovered. We then spent 7 days on the surgical ward and then moved back to the oncology ward we have come to love.
Radiology reports that Grace’s pulmonary emboli had cleared but she still has the clot in her pulmonary artery. It was looking like she would only have three cycles of chemo after surgery. We were so excited.
Then Grace received her hearing aids and pressed my lips to her ears and hugged me and kissed me and clapped her hands. She held my face in between her hands and smiled- she could hear me again. On the 02/05/2020 we are allowed to go home for the first time since 21/01/2020- 102 days in the hospital.
We go to clinic for the first time. Grace’s AFP markers have risen to 245. We are worried. She explains to us that when Grace was scanned in April the GA made her lungs deflate at the tumour site. In the next set of scans Grace’s lungs were blown up like a balloon and she was placed on her tummy. Unfortunately, the original tumours were still there. Her pulmonary emboli are still there. She now needs 6 cycles of chemo instead of 3.
She would be scanned after cycle 2 and cycle 4. They would make a surgical decision after cycle 4. After cycle 2 the scans show significant shrinkage in the tumours. They are more hopeful now to avoid surgery. Her AFP Markers drop to 24.
In June, we are playing with Grace at home when she bumped her leg off the mattress on the bed. She starts screaming we run up to emergency. After scans it reveals Grace has thin bones and has fractured her leg. She is put in a cast. After the cast comes off the orthopaedic team suggest Grace has brittle bones. A couple of weeks later she fractures her ankle just by trying to take a step by herself from the first time since January. She is put back in a cast for a buckle fracture in both her bones.
Grace is taking a long time to recover in between Chemo cycles. It is also giving the caner a chance to heal. Her AFP markers are staying in the 20s and 30s. After cycle 4 Grace is not placed on her tummy so the scans are not accurate. We don’t know if the tumours are still there or if new ones are developing because the readings are stable. However, they can see the pulmonary artery tumour has now shrank and is laying on the pulmonary artery and has started to calcify. Heart Surgery is off the table. We breathe a sigh of relief. No death defying surgery this time. Grace is taking a really long time to recover her counts in between cycles. Grace’s AFP markers soar to 90 and she is rescanned on her tummy. The original tumours are gone but in six short weeks a new tumour almost a centimetre has developed higher up in her lung. She will need surgery to remove it. Grace is also pulled off the trails as the disease has progressed while she is receiving chemotherapy. Her cancer is super aggressive. She will be treated as a relapse patient. She is placed on PRISM studies where children with a relapse have between a 5 and 20% chance of surviving. Her AFP sits at 28 after lung surgery.
We learn Grace has three spinal fractures and it is time for the endocrine team to join us on her journey. She also has to have a DEXA scant see her bone density.
While admitted the endocrine team come to talk to us about her bones. The chemo Grace is receiving and the fact that she hasn’t had high dose steroids throughout her treatment indicate her bone problem may be genetic. The will do DNA testing. They recommend Grace starts Bisphosphonates as soon as possible. They recommend Grace has half a dose as an inpatient as she has allergies already and a history of getting all the side effects to treatments she is getting. We are allowed home for a week and then we are readmitted. Grace receives her first dose of bisphosphonates and develops pain and fever after. Grace also re-fractures her ankle.
Grace’s new chemo regime begins as an inpatient. Grace will have between 4 and 6 cycles depending on how the cancer reacts to the new regime.
After cycle 1 her AFP is 15. She may have to have a resuscitation drug to supress her reaction for cycle 2.
23/10/2020 Grace’s AFP is 50. It is explained to us that this chemo Grace is on is her last chance. It is not looking good that her AFP markers have started to trend up. She will be scanned again to see what is happening. They tell us to prepare for the worst. We always have hope.
Today 06/11/2020 Grace's scans have come back clear and her tumour markers have dropped to 20. No one knows how this is possible. They are saying its a miracle. Grace will be rescanned to make sure they haven't missed anything. We have more hope.
Grace is now 22 months old and will be 2 on 11/12/2020 and has spent half of her life in hospital or at clinics in the hospital.
Grace is also a candidate for a cochlear implant for her left ear. She is now showing profound hearing loss in her left ear after the platin based chemotherapies.
Grace is also on regular NG feeds as she is struggling a little with eating and swallowing. At least she is not on TPN anymore. She has made it to a healthy 12 kgs. She can now sit and crawl by herself. She stands with support.
Grace is a Warrior, a resilient child with the courage of a lion, the heart of an angle and the smile of a mischief maker. We won’t give up. We are looking at what they can do for her in other parts of the world. We will go wherever we can to try to save her. If the worst does not happen we will use these funds for Grace's rehabilitation. Any funds not used will be donated to the Leila Rose Foundation.
You can follow Grace's amazing Journey on her Facebook page Amazing Grace.
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