We finally have some good news, in fact, some GREAT news. Ellie has achieved morphological remission!
 
Morphological remission is achieved when there is no trace of leukaemia blasts within a small sample of bone marrow containing around 20 cells after a manual count. This was conducted last week and we were informed that Ellie had technically achieved morphological remission on 19 March. Additionally, one of the benefits of enrolling in the MyeChild Trial is that we gain access to Minimal Residual Disease (MRD) testing. This is the newest technology, which although has been around for a number of years, has not been readily available for AML patients. MRD testing takes a sample of 100,000 cells and definitively determines the presence of leukaemia blasts. During this testing, there was no presence of leukaemia in Ellie’s sample. There were less than 5% blasts in her bone marrow sample (normal rate for healthy people) and none were cancerous. We received the results of MRD testing on 24 March and it means that chemotherapy treatment has worked and has eradicated the cancer!
 
This is fantastic news, and the best possible news we could hope for at this critical milestone. However, for clarity, Ellie is not yet cured of cancer and she is not yet in Complete Remission. There is a long way to go in her treatment and she must complete the full four cycles of chemotherapy over the six-month(+) period. MRD testing will be conducted a number of times during her treatment to confirm eradication of the leukaemia. To meet the requirements of Complete Remission, there are a number of other complex factors including CNS, specific analysis of blasts, neutrophil and platelet count requirements, and time-based factors. These will be determined much later and after Ellie’s treatment is complete.
 
This information comes as a big sigh of relief because the last 7 weeks has been very tough on Ellie. Even in the context of Leukaemia, Ellie has had a very rough time. She has been so sick – the sickest child on the ward from what we have seen (but also the only AML patient). While the nurses have not used those words, it is clear to us when speaking with them in the last week or so, that they were really, very concerned about Ellie’s response to treatment. For around five solid weeks she was constantly febrile, constantly nauseated, vomiting a dozen times daily, had a horrendous angry rash from neck to toe (unknown cause), zero counts on neutrophils, platelets, and white cells, and required blood transfusions every other day. We were never certain what the bottom of the trough in terms of toxicity would look like. Every time there was a new complication, we thought she had found the bottom, only to go deeper. She eventually found the bottom of that trough and then sat there for a long time until her lungs began failing and she was admitted to the ICU for 3 days. However, after stabilising in ICU, she started to bounce back, her rash subsided, her neutrophils and platelets began regenerating, and her mood and energy levels climbed.
 
Ellie bounced back so well that she was released from hospital on Sunday 21 March for 5 hours and was allowed to come home, disconnected from her central-line medications (a benefit of living so close to the hospital). Those 5 hours were so good for her morale and mental health (and ours). When we returned to the hospital, her blood counts continued to improve. Due to her improving condition and while we waited for the MRD results to return, our team of doctors made the unexpected decision that she could come home for 7-9 days until we were ready to commence phase 2 of chemotherapy. This took us all by surprise however, the doctors felt it was safe for her to be home (but so close to the hospital) and the mental health benefits outweighed the risks. Ellie has been home since 22 March and we expect she will remain home until 31 March when we commence phase 2 of chemotherapy. In the 72 hours since being home, her condition has improved considerably. She is eating, drinking, talking, laughing, playing, and doing school work – almost none of which, has been achievable in the last 6 weeks. It has been so wonderful having the whole family in the house at the same time, again, something that has not been possible for the last 6 weeks, with one parent staying with Ellie in the hospital at any given time.
 
At this point in Ellie’s treatment, it is impossible to tell whether some of the critical decisions we made in the first 72 hours were the right decisions – particularly regarding enrolling in the MyeChild Trial. This is something we think about every day. Has Ellie achieved morphological remission because of the Gemtuzumab trial drug? Would Ellie have achieved morphological remission without Gemtuzumab? Will the inclusion of Gemtuzumab mean that Ellie will remain in remission and achieve Complete Remission? Will it prevent her from relapsing or needing a bone marrow transplant? Could Complete Remission be achieved without Gemtuzumab? Was the length and depth of toxicity affected by our decision to treat Ellie with Gemtuzumab? Was her toxicity trough so deep because of our decision? Would her lungs have failed and would she have been admitted to ICU if she wasn’t treated with Gemtuzumab? Was the inclusion of Gemtuzumab unnecessary given her Inv(16) AML subset, thus unnecessarily exposing her to increased toxicity and increasing the risk of long term problems in her lungs, heart, and kidneys, which struggled the most during phase 1? We will never know the answer to many of these questions, however I’m confident our decisions were well-informed and were the best decisions to be made at the time; we just hope they were the right decisions and will lead to a good long term prognosis and Ellie’s enduring good health.
 
PC[...]

Ellie is 5 days post ICU and everyone is thrilled with her recovery. Her rash has drastically improved first and foremost! Her white blood cells continue to rise and her neutrophils continue to improve but in a slow up and down trend. Platelets continue to vary. She has a nasogastric (NG)  tube in and continues to adapt to that. The aim is to get off of the TPN (IV food) and only be fed through the NG tube plus any oral intake that she can tolerate. (Side note: Auntie Jen got her to eat 3/4 of a spring roll last night!). The team have dropped her antibiotic and will be dropping the fentanyl PCA soon. They are also aiming to change some of the meds from IV to oral in preparation of going home for a few days, when she is ready! Not yet, but we have it in our sights.  

Her hair loss continues and we may start to try a few cute head scarves or little wraps. I’m buying all sorts of options but it’s entirely up to her with what she feels comfortable wearing...maybe nothing at all. 

Ellie is doing GREAT with her mouth care and Paul, Jen and I are very proud of her. She understands the importance of it now as we have showed her before and after pictures. She does it 3 times a day. She’s also able to get up and walk small distances, like to the bathroom, and we are encouraging her to keep it going. [...]

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[...]