- C
Zara Jade Cooney was diagnosed with Philadelphia Positive Acute Lymphoblastic Leukaemia in September 2019, 6 weeks before her 3rd birthday.
It's been a very tough journey so far, the first year has been the hardest year of our lives by far, completely life changing.
We spent most of the first 12 months in hospital and I can't even put into words how difficult it has been and not to mention financially draining.
Zara reacted badly after the first 2 weeks of treatment and ended up with a perforated bowel so had emergency surgery at 3:30am Tuesday 8th October 2019 and ended up with an illeostomy which saved her life. She also suffered steroid induced diabetes.
After only receiving half of the first block of treatment her oncologist did not expect good results from her bone marrow biopsy and cried when her results showed 0.0% leukaemia cells in the marrow they tested.
She went on to endure months and months of high dose intensive chemotherapy being put into the high risk category due to the Philadelphia gene. She was so unwell throughout this time, suffering toxicity which caused her to have an illeus many times and the terrifying worry she wouldn't survive but she's proven to be the toughest person I know. She had numerous admissions due to serious infections, once she had to have her Porta Cath removed due to infection and another time her picc line removed due to 3 serious infections then reinserted in her other arm. Many of our admissions were due to her illeostomy causing lots of problems, dehydration, loss of potassium, magnesium, sulphate and other electrolytes and salts, nausea and vomiting. She also often had mucositis which caused painful ulceration and red raw skin around her stoma and ulcers in her mouth and down her digestive tract.
I remember Zara's specialist (head oncologist at women's and children's hospital) saying she's the youngest patient with the Philadelphia Positive gene she's had and we said to her so she's a guinea pig? And she said yes she is...
Zara's Oncologist, Dr Heather Tapp explained that they didn't have a guide to treat Zara so together we chose a pathway not knowing if it was the right choice as the research study for treating Zara's diagnosis was only half way through.
But even with that said, we knew she was in the best hands.
Then when she was in severe pain following her stoma prolapsing and retracting after sometime scans revealed she had an on off partial obstruction. Originally her stoma was going to be reversed once she started her maintenance treatment but this sped things up and again was rushed to theatre for a reversal on Sunday June 14th 2020.
Thankfully things started to improve once she no longer had her illeostomy and we could actually see our Zara returning.
She still had one last block of IV chemotherapy which caused an illeus and then a very bad infection. Her last block of IV chemotherapy had to be completely changed as they said she would not have survived the toxicity again. We nearly lost Zara a couple of times due to toxicity but her strength, determination and stubbornness pulled her through.
A couple of months after she was diagnosed she had to be fitted with a bridle which is a device that stops her from pulling her nasogastric tube out, if she pulls on it, it hurts a lot which is horrible but better than having the tube reinserted several times a day! I nervously made the choice to have the bridle removed a couple of months ago (13 months after if was first inserted) and so far so good, can't wait to get the tube removed one day. Only 30 children in Australia have a bridle I recently found out.
We are now just over half way into maintenance and she's running a muck, full of energy and almost back to our old Zara. Zara's treatment is due to finish in March 2022 but she may continue with her imatinib for at least 12 months (oral chemotherapy for the Philadelphia gene).
We have had to isolate a few times during maintenance as the oral chemotherapy drops her counts too much causing her to have no immune system and requiring platelet transfusions. Her doctors have been closely monitoring her chemotherapy dosages and have realised she is sensitive to the chemotherapy so are increasing it very gradually so we are getting back on track again now.
Zara barely ate for over 12 months so had to be fed through her tube, thankfully we stopped the feeds at the end the year. It's a very slow process but Zara is gradually eating more and putting on weight. Drinking has been an issue also but improving, I have to use the tube to keep her hydrated.
Over the past 14 months I've lost count as to how many blood and especially platelet transfusions she's had so thankyou to everyone who donates, you really do save lives.
She even required several white blood cell transfusions (to speed up the healing process after surgery as she had no immune system at all) near the start and the staff hadn't done one in years so they found a donor in Melbourne and asked them to donate and flew the blood straight to Adelaide, AMAZING.
Zara now attend kindy 2 days a week (if her blood counts are high enough) and she loves it, she is very active. Zara has a nurse at kindy who administers her medication and keeps her hydrated.
Zara suffers from neuropathy which is a side effect from the IV chemotherapy vincristine and is on medication for this which is helping but we are still in close contact with the Pain doctor at the pain clinic and she is gradually increasing her dosage.
We have a lot of appointments to attend, Physio, OT, dietician, dental, Pain Unit and not to mention Oncology clinic. As Zara is over half way through maintenance we no long have to go in for 6 weekly lumbar puncture's which is great. Zara had to have an anaesthetic every time she had a lumbar puncture as the sedating medication had the opposite effect which happens in 1% of children but Zara has always been unique every step of they way.
One day the bags under my eyes will go away, I keep telling myself this.....
We are all traumatised with what's happened during this journey and are now having to deal with this.
Having a child with leukaemia is not only draining and full on but also financially draining so if you are able to help out even a small amount, we will be very grateful. We would also LOVE to be able to do some fun things with Zara and your donations will help us.
We are all still feeling very sad about losing our beloved pets Axel and Mojo. Zara is constantly asking if we can go to heaven and get Mojo and Axel and bring them home. It would be lovely to be able to get another dog for the family, I think this will help Zara in her recovery.
Thankyou.
It's been a very tough journey so far, the first year has been the hardest year of our lives by far, completely life changing.
We spent most of the first 12 months in hospital and I can't even put into words how difficult it has been and not to mention financially draining.
Zara reacted badly after the first 2 weeks of treatment and ended up with a perforated bowel so had emergency surgery at 3:30am Tuesday 8th October 2019 and ended up with an illeostomy which saved her life. She also suffered steroid induced diabetes.
After only receiving half of the first block of treatment her oncologist did not expect good results from her bone marrow biopsy and cried when her results showed 0.0% leukaemia cells in the marrow they tested.
She went on to endure months and months of high dose intensive chemotherapy being put into the high risk category due to the Philadelphia gene. She was so unwell throughout this time, suffering toxicity which caused her to have an illeus many times and the terrifying worry she wouldn't survive but she's proven to be the toughest person I know. She had numerous admissions due to serious infections, once she had to have her Porta Cath removed due to infection and another time her picc line removed due to 3 serious infections then reinserted in her other arm. Many of our admissions were due to her illeostomy causing lots of problems, dehydration, loss of potassium, magnesium, sulphate and other electrolytes and salts, nausea and vomiting. She also often had mucositis which caused painful ulceration and red raw skin around her stoma and ulcers in her mouth and down her digestive tract.
I remember Zara's specialist (head oncologist at women's and children's hospital) saying she's the youngest patient with the Philadelphia Positive gene she's had and we said to her so she's a guinea pig? And she said yes she is...
Zara's Oncologist, Dr Heather Tapp explained that they didn't have a guide to treat Zara so together we chose a pathway not knowing if it was the right choice as the research study for treating Zara's diagnosis was only half way through.
But even with that said, we knew she was in the best hands.
Then when she was in severe pain following her stoma prolapsing and retracting after sometime scans revealed she had an on off partial obstruction. Originally her stoma was going to be reversed once she started her maintenance treatment but this sped things up and again was rushed to theatre for a reversal on Sunday June 14th 2020.
Thankfully things started to improve once she no longer had her illeostomy and we could actually see our Zara returning.
She still had one last block of IV chemotherapy which caused an illeus and then a very bad infection. Her last block of IV chemotherapy had to be completely changed as they said she would not have survived the toxicity again. We nearly lost Zara a couple of times due to toxicity but her strength, determination and stubbornness pulled her through.
A couple of months after she was diagnosed she had to be fitted with a bridle which is a device that stops her from pulling her nasogastric tube out, if she pulls on it, it hurts a lot which is horrible but better than having the tube reinserted several times a day! I nervously made the choice to have the bridle removed a couple of months ago (13 months after if was first inserted) and so far so good, can't wait to get the tube removed one day. Only 30 children in Australia have a bridle I recently found out.
We are now just over half way into maintenance and she's running a muck, full of energy and almost back to our old Zara. Zara's treatment is due to finish in March 2022 but she may continue with her imatinib for at least 12 months (oral chemotherapy for the Philadelphia gene).
We have had to isolate a few times during maintenance as the oral chemotherapy drops her counts too much causing her to have no immune system and requiring platelet transfusions. Her doctors have been closely monitoring her chemotherapy dosages and have realised she is sensitive to the chemotherapy so are increasing it very gradually so we are getting back on track again now.
Zara barely ate for over 12 months so had to be fed through her tube, thankfully we stopped the feeds at the end the year. It's a very slow process but Zara is gradually eating more and putting on weight. Drinking has been an issue also but improving, I have to use the tube to keep her hydrated.
Over the past 14 months I've lost count as to how many blood and especially platelet transfusions she's had so thankyou to everyone who donates, you really do save lives.
She even required several white blood cell transfusions (to speed up the healing process after surgery as she had no immune system at all) near the start and the staff hadn't done one in years so they found a donor in Melbourne and asked them to donate and flew the blood straight to Adelaide, AMAZING.
Zara now attend kindy 2 days a week (if her blood counts are high enough) and she loves it, she is very active. Zara has a nurse at kindy who administers her medication and keeps her hydrated.
Zara suffers from neuropathy which is a side effect from the IV chemotherapy vincristine and is on medication for this which is helping but we are still in close contact with the Pain doctor at the pain clinic and she is gradually increasing her dosage.
We have a lot of appointments to attend, Physio, OT, dietician, dental, Pain Unit and not to mention Oncology clinic. As Zara is over half way through maintenance we no long have to go in for 6 weekly lumbar puncture's which is great. Zara had to have an anaesthetic every time she had a lumbar puncture as the sedating medication had the opposite effect which happens in 1% of children but Zara has always been unique every step of they way.
One day the bags under my eyes will go away, I keep telling myself this.....
We are all traumatised with what's happened during this journey and are now having to deal with this.
Having a child with leukaemia is not only draining and full on but also financially draining so if you are able to help out even a small amount, we will be very grateful. We would also LOVE to be able to do some fun things with Zara and your donations will help us.
We are all still feeling very sad about losing our beloved pets Axel and Mojo. Zara is constantly asking if we can go to heaven and get Mojo and Axel and bring them home. It would be lovely to be able to get another dog for the family, I think this will help Zara in her recovery.
Thankyou.