Hi all, quick update to let everyone know that Ellie was released from ICU today and we are back up on the ward - our home away from home. While the underlying problems in her lungs are still unknown (infection/inflammation?) she is doing well and even showing signs of progression. Her neutrophils have started to regenerate which is amazing and she hasn’t been febrile or nauseous for 3 days (likely due to steroids which will probably stop tomorrow) she’s much more communicative, lively and now becoming clingy to me and actually asking for emotional support. All good signs but we still need to work out what the cause of the ‘significant adverse event’ was. That’s the terminology being used to describe it as that info needs to be fed back to the MyeChild Trial.[...]

We want to give everyone an update that Ellie has been admitted to ICU as of yesterday at 4 PM.  Her oxygenation started deteriorating and breathing had been laboured starting around 2 pm yesterday and her diastolic (bottom) blood pressure had been dropping, lowest down to 20 mmHg.  They called a MET call (like a code blue) on the ward when this happened. I was with Ellie at the time. Eerily, she appeared fine during it all, and I quietly stepped back, calm and collected while about 15 people flew into the room, threw the curtains back, flipped on all the lights and descended upon her. She is the epitome of strength and bravery. Stoic and strong willed, and this was yet another testament of just how much her body is being tested yet she rarely, if ever, tells us is she is in pain or if something wrong. I have since collapsed in a little heap in the hours since. Holding it in when it counts, and letting it out when no one is looking. Thank God for Paul who is always my rock to lean on. [...]

Hi Everyone, Day 27 in hospital now. We’re all hanging in there.

Ellie is not really well, even in terms of AML. Paul and I were talking about it last night and it seems like she’s the sickest child on the ward, that we can see at least. She’s covered neck to toes in a horrid rash which we think was a reaction to an antibiotic, pipericillin tazosin, and because she has no platelets (well, they’re consistently around 7-11 and should be above 80) the rash appears mottled and purple and causes the blood to pool in her pressure points. She has the highest temperatures that will NOT stay away. Spiking as quickly as every 2 hours, and up to 104 F/40.2 C. This then causes rebound nausea that has been increasing over the last 24-48 hours. Her blood pressure and heart rate are going up, which could be due to pain, but is of concern. Ellie had a CT of the chest, abdomen and pelvis  and an ultrasound of the kidneys to determine if there is a source of infection somewhere that we/they are overlooking, but, thank God, everything keeps coming up clear. Blood cultures are being done almost every day and she has been tested for a battery of the common viruses and again, negative. So maybe it’s just the side effect of the big gun chemotherapeutic agent gemtuzamab. We don’t know.[...]

We have become quite adept at ‘reading’ how Ellie feels or how she ought to be feeling based on her blood count, which is provided to us every morning. We keep a record of Ellie’s blood count in a diary, along with all milestones and other important information such as surgeries, medications, results, and other issues. This helps us to build a holistic picture of how she is tracking and can help us to better understand why she is/isn’t reacting to certain things the way we would expect.
 
Through the course of the chemotherapy treatment, the chemotherapy drugs (Cytarabine and Mitoxantrone) kill the cancerous cells in the blood and bone marrow. However, chemotherapy cannot differentiate between cancerous cells and healthy cells and the result is that all cells in the bone marrow, including healthy cells and platelets, are killed. This results in the inability to fight infections and the failure of normal blood functions.
 
For a period following each chemotherapy phase, Ellie’s bone marrow is unable to generate her own cells and platelets and this results in long periods of constantly being febrile, nauseated, and high blood pressure. During this period, Ellie is at high risk of many infections. To mitigate this, she has a constant supply of up to nine different products feeding through her central line. These include fluids, anti-fungals, anti-biotics, anti-nausea, and nutrition (TPN). She also receives donor blood products almost daily as she continues to chew through platelets and red blood products.
 
Ellie is currently nine days since her last treatment of Cytarabine and she is still unable to generate her own healthy cells and platelets. Typically, the recovery period after each phase is around three weeks until the bone marrow is able to generate enough healthy cells for the child to be fit enough to recommence the next phase of chemotherapy. However, we have been told to expect possibly four to six weeks because of the way Ellie is responding. This is probably because of the increased toxicity caused by the inclusion of Gemtuzumab as the trial chemotherapy drug that we opted for when enrolling Ellie into the clinical trial (see previous journal entry).
 
The four key numbers we monitor are Haemoglobin, White Cell Count, Absolute Neutrophil Count, and Platelets. For the last two weeks, on average, Ellie’s neutrophil count has been 0.0 and her platelets are less than 10. These are critical levels and show that she is immunosuppressed, neutropenic, has absolutely no means of fighting even the smallest infection, and she is unable to effectively form blood clots. This is the most challenging period of each phase as she fights through the side effects of chemotherapy.
 
So, until Ellie is able to generate her own healthy cells, and until her blood count numbers improve, we remain in the first induction phase recovery period waiting to recommence the next round of chemotherapy. These numbers are also used when considering whether Ellie is healthy enough to go home for short periods during her treatment. Patients are typically able to go home for around one week during the last week of recovery in each phase and immediately prior to the next phase of chemotherapy commencing. We have our fingers crossed, hoping that Ellie is able to recover more quickly, allowing her to go home for a short period of time and to break up the protracted periods in hospital.
 
We did have some good news recently: The second successive Lumber Puncture test shows no sign of blasts in Ellie’s Central Spinal Fluid. This is confirmation that her Central Nervous System Disease has been successfully treated. Over the course of her treatment, she will have another four intrathecal chemotherapy injections into her CSF to ensure her CNS remains clear of cancer.
 
The other relatively good news we received is that Ellie’s bone marrow type is a very common type, making it easier to find a match in the event she needs a bone marrow transplant. Paul, Kara, and Annabelle were tested to see if we were a match however, its usually only the sibling who is a match and the chances are less than 25%. Annabelle was not a match as a possible donor. We don’t yet know if Ellie will need a bone marrow transplant and we are praying that this is not required. However, at the end of the second phase of induction chemotherapy, a series of tests will be conducted, including Residual Minimal Disease testing (see earlier journal entry) to understand how well Elie has responded to treatment and if she has entered remission. If she has not responded well enough (unsure of the metrics yet) she may require a bone marrow transplant, which significantly increases her risk profile and impact her prognosis. We aren’t really thinking about this possibility yet as we are trying to focus on overcoming the immediate issues and taking things one week at a time.
 
PC[...]

Three weeks into Ellie’s journey and we have been overwhelmed with the love and support provided by our friends and family, near and far. We have received so many messages from wonderful people who are offering to help in any way they can. This is an unusual feeling for us as over the years we have grown used to managing our family with little support. This is largely due to regular postings for Paul’s work and being separated from Paul’s family (Perth) and Kara’s family (America). We have become used to adapting and doing what we need to accommodate family situations.
 
One thing we quickly learned after Ellie’s diagnosis is that we can’t do this on our own. The hospital’s fantastic team of support, which includes social workers have emphasised that we will need help throughout this process and that we need to learn how to accept help from friends and family who really want to help. These lessons are reinforced in the literature provided to us, and we are doing our best to read as much of it as possible.
 
Our amazing friends, and Godparents to Ellie – asked us if we would be comfortable with them establishing a GoFundMe page to support Ellie’s treatment and rehabilitation. Initially, we weren’t very comfortable with the idea as our thoughts were that there are so many people in a worse situation than us. We are fortunate to live 15 mins away from the best hospital in Australia for children’s cancer, whereas many other families in the unit have to travel significant distance from regional NSW just to be with their child; We are fortunate to be posted to Sydney when the diagnosis occurred, rather than Darwin or Townsville where we would need to crash-post and move to Sydney or Brisbane for treatment; We are fortunate to live in Australia where our health system means all Australian’s get the same quality of care for acute conditions like cancer; We are fortunate that our employers are understanding and flexible enough to help us work out a balance between caring for Ellie and working at a rate that is sustainable for our family; and we are fortunate to have loving family who have travelled to Sydney to help, and friends who are looking to help in any way they can.
 
However, we know that Ellie’s treatment and recovery will extend well beyond her acute care in hospital. We know that for a number of years after achieving remission, she will need ongoing hospital visits, check-ups, and possibly additional treatment. We also know there will be long term implications from her chemotherapy treatment that will require different medical treatment, and she will likely need ongoing learning support and physical rehabilitation. We don’t fully understand the extent of these issues and cannot predict the future. However, we have learned that every child responds differently to treatment and while the future is somewhat uncertain, what is certain is that it will challenge us all.
 
It is for these reasons that we agreed to the generous offer for the GoFundMe page to be established for our Ellie. We are incredibly humbled by all the offers for support and we know this will provide a mechanism to allow people who are unsure how to help, to offer their support. We are so very appreciative of everyone’s generous support, thoughts, and prayers.
 
Ellie’s GoFundMe page: https://www.gofundme.com/f/support-for-ellie-carter[...]

Hospital life is rolling along. We begin to realise what the new normal is. Paul and I have accepted it head on and continually adapt to what we need to do to benefit Ellie in the best way. We are utilizing the play therapist, the music therapist, the social worker, the clinical nurse consultant, the child psychologist, an educator from a not for profit organization, and Hospital School, which is a NSW state school explicitly for children in hospital. We continually liaise with her physical therapist, the occupational therapist and of course the amazing team of pediatric oncologists and nurses who are all managing her care.
 
We have changed from a schedule of alternate days with Ellie to 3 consecutive days each (with Aunty Jen there on a Saturday). We journal Ellie’s blood results every day, watching her white blood cells, platelets, hemoglobin and neutrophils, and any procedures that she had or has upcoming. We communicate on a white board to record her wees, poos, vomits, what she eats and what she drinks. We are being the best advocates we can for every nuance in behavior or mood change and every variation in physical status. We are doing all this while attempting to work from the hospital and maintain our jobs. 
 
We are very cognizant of Annabelle’s needs and are doing all that we can to nurture her in this time. She has become very…not needy, not clingy, but just cuddlier and wanting to be close to me. I love it! Jen has really assisted in keeping Annabelle on her normal schedule, doing school pick-ups and drops offs regularly when Paul and I are at work or at the hospital. Annabelle is being very well supported by her teachers, the principal and the other families at school.
 
And, lastly, you are eagerly wondering how our dear Ellie is doing. Our sweet girl is in the greatest struggle she has ever faced. She is down most days due to the continued nausea and high temperatures peaking at 40.9 C (105.6 F). She does her best to perk up and have a few sips of water and a few nibbles of food when the temperatures go down, but it drains her so much. I truly don’t know how her little body is handling it. She is on 3 anti-emetics around the clock, an anti-fungal, paracetamol (Tylenol) every 6 hours, now an anti-hypertensive because her blood pressure is going up, and she receives blood products almost every day. She has also been started on a morhpine PCA (patient controlled analgesia) due to abdominal pain which is likely due to mucositis in the gut. All the mucosa in her body (mouth, gut and bowel) that has rapid turnover of cells gets damaged by the chemo and can become ulcerated, and thus extremely painful. So far, we don’t think it’s too bad but we are aware that it can get worse.
 
You have all showered Ellie with well wishes, gifts and cards and each one does brighten her day and usually elicits a smile. Paul and I choose our moments to present her with a gift/package so that she can best enjoy it. Sometimes it takes days before we can find the right time to give her something that has arrived in the mail.
 
There is so much to tell but this is the update I have for now. Love to all of you and thank you for your prayers, love and support xx[...]

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. [...]