Hi Everyone, Ellie is doing OK. We had 3 pretty good days where she was semi-bubbly, talkative and eating and drinking. Yesterday and today however she had been very tired, quiet and withdrawn again. She did get up and walk around the ward 2 days in a row and we, and the physio were very impressed! Also, today we wheeled her out to this “Fairy Garden”, a special outdoor area for the kids at the hospital. The weather was beautiful and the air felt so fresh on our skin, but Ellie seemed saddened by it all. I suppose the realization of what is now missing in her life. We moved rooms again and are back in the quad, but there is now only one other little girl. Her name is Amelia, she is 6, and she has huge cheeks from her steroids, an almost bald, fuzzy head, and a very bright energetic attitude! Her Mum is lovely too. They were showing Ellie, and us, pictures of their 5 month old Groodle named Morris ❤️ We think the stars are aligning to tell us we need a Groodle as they are coming up more frequently in conversation and we had already been researching a breeder in NSW :) Paul is on night shift  tonight with Ells and Aunty Jen will be there tomorrow for her first “shift”. Medically, Ellie is stable and received her last dose of gentuzamab today, the special chemo that is part of the trial she is in. We hope it works well for her. She has her next LP next Tuesday or Wednesday. Did we tell you that her CNS is all clear? That was excellent news. She is looking very thin now...all the fluid that had built up is gone and she is under the weight that she was when admitted. The goal now will be to keep her weight up.[...]

Diagnosis
 
On 06 Feb 2021 Ellie was diagnosed with Acute Myeloid Leukaemia (AML), a rare form of blood cancer. AML starts in the bone marrow when immature white blood cells (blasts) become cancerous and rapidly divide but never mature into normal cells. When the bone marrow fills with leukaemia blasts, normal healthy white blood cells, red blood cells, and platelets are crowded out and unable to grow. This results in the inability to fight infections and the failure of normal blood functions.
 
There are two main types of Acute Leukaemia: Acute Lymphoblastic Leukaemia (ALL) and the more rare, more difficult to treat Acute Myeloid Leukaemia (AML). Acute Leukaemia accounts for about 1.1% of all cancer cases in Australia. Roughly 75% of these are ALL and 25% AML. Around six children are diagnosed with AML in Australia every year. AML is more aggressive than ALL in its development and therefore the chemotherapy treatment is more intense, although usually for a shorter period than ALL.
 
I would caution anyone who google searches AML as the statistics are very confronting, particularly regarding prognosis. The single biggest factor that influences prognosis is the age of the patient. Children under the age of 10 have a much higher survival rate and so the prognosis data is much better than what is typically presented in online searches. The following link is a good resource for further info and reading: https://www.cancercouncil.com.au/acute-myeloid-leukaemia/
 
In addition to AML, Ellie was also diagnosed with Central Nervous System Disease, the name given to the condition whereby the cancerous blasts are present in the spinal fluid. This occurs when the cancerous blasts jump the blood/brain barrier. This is typically an uncommon occurrence as blood is separated from the CNS and its less likely for blasts to cross the barrier.
 
In the first couple of days in hospital, Ellie was treated with intrathecal chemotherapy, which is the injection of a small amount of chemotherapy into the spinal fluid. The first injection on 08 Feb 21 was unsuccessful in clearing the CNS of blasts however, a second treatment on 10 Feb 21 appeared to be successful as the results from Ellie’s third lumbar puncture on 16 Feb 21 showed no presence of the cancerous blasts. Ellie will have another five intrathecal chemotherapy treatments over the course of her six months of chemotherapy.
 
A few days after confirming Ellie’s diagnosis of AML, her Cytogenetics were also confirmed. This is a test for the specific chromosomal DNA abnormality, which causes the AML. Her Cytogenetics were confirmed to be an Inversion of Chromosome 16 (Inv(16)). This was the first small piece of good news we had as the Inv(16) cytogenetics is one of the characteristics consistent with a ‘good’ prognosis rather than ‘moderate’ or ‘poor’ prognosis for AML. Based on this information, our team of incredible doctors confirmed Ellie’s treatment plan, and her chemotherapy commenced at 1800hrs on 11 Feb 21.
 
Treatment
 
The treatment plan for AML is complex and progression is based on how Ellie responds to each phase. The treatment plan typically lasts for six months if all hurdles are achieved and there are minimal setbacks. The six month period is broken into four phases. The first two phases (induction chemotherapy) consist of 8-10 days of chemotherapy using two different chemotherapy drugs twice daily, followed by three weeks of recovery. It is during this recovery period that the significant side effects of the chemotherapy will be experienced. There are generally four phases of chemotherapy and recovery. The first two induction phases are relatively clear to us however, phase three and four (consolidation therapy) are less clear as the treatment plan will be determined by how Ellie responds during the induction phases.
 
Prior to commencing chemotherapy, we elected for Ellie to undergo an ovarian tissue harvest. Chemotherapy results in a very high likelihood of infertility later in life. The ovarian tissue harvest allows for Ellie’s ovarian tissue to be frozen, giving her the possibility of having her own biological children in the future.  
 
MyeChild Clinical Trial
 
Prior to commencing treatment, we were offered the option of enrolling in an international trial, which aims to improve treatment in AML patients. The Trial provides access to new chemotherapy drugs and other tests to determine more accurately, the response to treatment. There are clear benefits but also risks in enrolling in the trial. After careful consideration and days of questioning our team of doctors, we opted to enrol Ellie in the trial based on the understanding that this provides her the best treatment available and the highest likelihood of total remission.
 
The literature shows that the outcome for children with AML has not improved much in the past two decades and the rate at which the disease can come back (relapse) is considered unacceptably high. If AML patients relapse, it is extremely difficult to treat a second time.
 
The MyeChild Trial introduces a new chemotherapy drug (Gemtuzumab Ozogamicin) during the first phase of treatment. Gemtuzumab is given in addition to the two other ‘standard’ chemotherapy drugs for AML, Mitoxantrone and Cytarabine. Gemtuzumab specifically targets AML cells unlike the standard chemotherapy drugs, which kill all cells in the body. Gemtuzumab has been found to significantly reduce the incidence of relapse when used during induction treatment. The trial has shown success with one and two treatments of Gemtuzumab and has now progressed to trialling three treatments to identify the optimal dose. When we entered the trial, we were told Ellie would be randomised to receive ether one or three treatments. Ellie’s randomisation resulted in three treatments of Gemtuzumab.
 
The benefits of being in the MyeChild trial are access to the world’s best treatment drugs, Residual Minimal Disease (RMD) testing (which is able to identify to 1:10,000 specificity a blast cell in the blood or CSF sample) and higher chance of remaining in complete remission without relapse. The risks are increased toxicity (side effects) during treatment, which can result in longer recovery. This is particularly the case given Ellie will receive three doses of Gemtuzumab. While there are many other factors at play, this is a broad summary of the trial and our rationale for consenting to this new treatment. We are comfortable this trial and the treatment plan provides Ellie with the world’s best treatment and the highest likelihood of complete remission in the long term. We also remain comfortable that Ellie is in the best place possible and receiving the best care available. Her team of doctors are outstanding and continue to provide us a wealth of information and reassurance that Ellie will get through this.[...]

Our world changed on Saturday, 6th February 2021. Ellie had been having some low grade temperatures for about 10 days. She would be fine during the day and then spike a temp in the evening. She has had this happen before over the course of her life but usually it was self-limiting to 1 week, as often happens with a virus. When we got into the 10 day mark I thought I would make an appointment with her GP just to get a full blood count and urine. Also, we started noticing she had a decreased appetite and was quite tired. But, this was also the first week of school after summer break and adjusting to the full days can be tiring, so I wasn’t jumping to any conclusions. But as a nurse and mom, I did start to query a more uncommon virus or worst of all, an autoimmune issue. [...]