Thank you to everyone who has reached out and continue to support us during Ellie’s BMT. We want to keep everyone’s mind at ease during this period and will aim for weekly updates.
 
Since our last update, Ellie has continued to struggle physically and emotionally however, without any major complications. There have been a few close calls. As we know, one of the major challenges is avoiding the smallest infections that could prove life-threatening.
 
In the last week, Ellie has had 3 infections, though all seem to be under control with several antibiotics. The first was streptococcal pharyngitis (Strep) which we believe started in her mouth due to the mucositis. It then entered the blood through her open mouth sores. The problem with Strep is it apparently sticks to plastic so the concern is it could stick to her central line which runs through her heart and enables her to receive all critical medication. This would mean we need to remove and replace her central line, which is a significant surgery and one that she is not stable enough to undergo. Thankfully, the strep appears to have cleared, though she will remain on Clindamycin antibiotics for a further 10 days.
 
Ellies second infection was staphylococcus. Staph can come from anywhere and is commonly found on the skin. It could have been caused by any one of us not cleaning something well enough, or just from Ellie’s own skin which is why we shower her every day and are extremely careful with hygiene. This also appears to be under control with vancomycin antibiotics.
 
Ellie’s third infection which was confirmed today is believed to be micrococcus luteus, another bacteria commonly found on the skin. We’re still waiting for clarity on the sensitivity of this bacteria to antibiotics however, we understand it is likely sensitive to Vancomycin and Clindamycin.
 
Ellie is on a range of other medications for several other ‘smaller’ issues that we’re working through. These include consistent high blood pressure, blood, protein, and glucose in her urine, low potassium levels, fluid retention, and a heart murmur. These all point to reduced major organ function, but nothing that has flagged as a serious concern yet. I’ve mentioned in the past that much of the trauma Ellie has endured has become normalised. In any other circumstance, we would be concerned by just one of these issues. However, all things considered, they are of lesser concern right now.
 
Ellie is now on constant Fentanyl (morphine) background with a Patient Controlled Button Analgesia (PCA) button for pain break-through. The background has been increased a couple of times to keep on top of the pain and it seems to be working reasonably well. She’s mainly in pain due to mouth sores, mucositis, gut pain, and regular nerve pain in her side, shoulders, back, and legs.
 
The good news is the nausea and vomiting has almost completely subsided, so her appetite is returning. In the last few days, she’s been eating soft foods and lots of cereal. This is actually a big win, and the team are particularly impressed as its common for kids to not eat for weeks on end during transplant. It means she will be less reliant on TPN and nasogastric feeds in the medium term. In fact, she isn’t on TPN yet which we had expected.
 
The other early sign of some good news is today, her White Cell count appears to have jumped up to 1.5. A jump from 0.0 to 1.5 is a considerable jump for a neutropenic child. There was also an early indicator of neutrophil count recovery commencement however, we will monitor this over the next few days. If indeed her WCC and neutrophils are starting to recover, it signals the beginning of engraftment. This is excellent, but also a little scary as we’re entering GvHD territory – one of our biggest concerns.
 
So, the next 1-2 weeks could either be really good with blood count recovery due to engraftment and hopefully Ellie starting to feel better, or really bad due to GvHD. We have our fingers crossed and are optimistic for the former.
 
Despite all the pain she’s enduring, Ellie still manages to occasionally give us a cheeky smile such as in the attached photo.
 
PC[...]

Well, this is really tough. I don't know what else to say.

It's been10 days since the last update when the stem cells were pushed into Ellie's body via her central line.  Days +1 to +5 were pretty good. She was pretty upbeat, in and out of bed, doing activities chatty, and eating and drinking. But, then on Day +6, things started to turn. More meds as per the program were introduced, and the mucositis in Ellie's mouth started to develop. The past 4 days have been awful, with Ellie at her lowest point since relapse. She won't speak very much due to the pain in her mouth. She often lies in bed doing nothing as she has no desire to engage in activities and she is sleeping quite a lot. Her BP is elevated and she was started on an anti-hypertensive, Amlodipine. This has just been increased today as she was requiring even more medication for breakthrough hypertension (Nifedipine). She was started on a Fentanyl PCA bolus only, but that was quickly increased to include a background (constant dose) plus the bolus dose that she can deliver herself with the click of a button when she needs it. She is good about using this as needed, before getting out of bed to go to the toilet or as she is waking up in the morning. Her urine output has glucose and protein in it and the team is watching her closely for any declining function in her kidneys. She is already on defibritide to protect her from veno-occlusive disease (as mentioned in a previous post) but more may need to be done. Her blood sugars are going up marginally as a side effect from the steroids she has now started. She will require insulin if this continues. [...]

Just a quick update to let everyone know Ellie’s Bone Marrow Transplant went ahead today as planned. Everything went well, with no major immediate reactions. As I’ve said before, stem cell transplant theory is fascinating. Our anxiety has been building over the last few weeks and we were all feeling a little nervous about today. It’s crazy to believe this little 37ml bag could be what saves Ellie’s life.
 
Ellie did fantastically and seemed unphased by the transplant. She’s been very sick for the last week or so with constant nausea and vomiting. She doesn’t have much energy so was just resting and watching a movie during the momentous occasion. She hasn’t been talking and barely communicating for the last week but was able to nod/shake her head when asked if she was in pain and if she understood what was happening. I could tell that she was paying attention and was aware of everything happening around her.
 
While Ellie has largely ‘shut down’ hilariously, she sometimes randomly perks up for 30 seconds to make a sharp comment (usually directed at a nurse or us) which catches everyone off guard. During the transplant infusion, she commented that it ‘tasted like old yoghurt’. The transplant team found this interesting as a common reaction is an awful taste which induces vomiting, but they were impressed with the description of ‘old yoghurt’. The old yoghurt smell was quite potent when Ellie exhaled, and it lingers around the room for some time.
 
It will now take a couple of weeks for the fresh stem cells to fully bed-down in the long bones and for engraftment to occur. Over the next 2 weeks, we will hopefully see the chemotherapy induced nausea and vomiting start to subside. Chemo has now done its job and Ellie’s bone marrow has been destroyed. She won’t have any more chemo, hopefully ever. While the nausea should subside, we’re now entering mucositis territory which has already commenced. This will likely result in extremely painful mouth sores and gut pain for which the team are planning to put her straight on constant fentanyl (morphine). Hopefully, from D+14 we will start to see signs of engraftment which, will include a degree of GvHD, as I’ve explained in previous posts.
 
The next few weeks are going to be difficult for Ellie. We all have strong hopes for quick engraftment without major complications.
 
Thank you to everyone for the continued love and support. Please keep Ellie in your thoughts.
 
PC[...]

The last couple of days Ellie has started some of the major medications and chemotherapy to condition her for transplant. It’s been a hard few days and Ellie is really feeling the effects of the Busulfan chemotherapy. Its didn’t take long for side effects to start and she has been constantly nauseated and vomiting. The team continually change up the medications to find the balance and I think we recently had a breakthrough with the vomiting as that has slowed, however the nausea remains. She has stopped eating and drinking so she’ll probably be on nasogastric feeds and Total Parenteral Nutrition by Sunday/Monday. We’re lucky she hasn’t had any of the major and rare side effects and we have our fingers crossed it stays this way. We know that she is going to get sicker, but we still hope for no major complications.
 
It's a strange feeling to look at her in her sick state and try to imagine what’s happening inside. It’s not just a matter of being nauseated; we know her bone marrow is being completely destroyed right now. I can’t imagine what that feels like. I tried saying to her to just close her eyes and rest ‘because when I feel really sick, it helps to close my eyes and try to sleep.’ I felt like an idiot after saying that as any sickness I have felt can never compare to what she’s feeling right now.
 
We have a laminated copy of the ‘game plan’ in the room and I have attached a photo. So far Ellie has started:
 
Pentamidine to prevent PCP
Lipo Amphotericin for fungal infection
Ursodeoxycholic acid and Defibrotide to prevent VOD for which Ellie is high risk due to previous Gemtuzumab
Levetiracetam to prevent seizures brought on by Busulfan
Cefapine for broad spectrum antibiotic
Metoclopramide, Ondansetron, Cyclizine, and Aprepitant for nausea.
 
All of this is to combat the effects and complications caused by Busulfan chemotherapy and ATGAM. ATGAM is an immunosuppressive drug that boosts the effects of the chemotherapy to ensure it destroys the immune system and any remaining lymphocytes that could reject the donor cells. Over the weekend, the Busulfan will cease and Cyclophosphamide chemotherapy will commence, along with Cyclosporin for GvHD prophylaxis.
 
Ellie is now ‘shutting down’ like she did during the horrific induction therapy in 2021. However, she is doing so with what seems to be more of an awareness of what’s happening. She still communications with some head nods or frowns but that’s about it. But it’s all we need for now; just to know she’s still here with us.
 
The whole operation is much more tightly controlled than previously. Every drug needs to be given at very specific times and before administering them, the nurses warn us what to expect and what ‘could’ happen. Our head oncologist, who lucky for us is also the head of transplant and soon to be head of the department, offhandedly remarked ‘yeah I’ve already yelled at someone for not having one of the meds ready in time.’ I think it was a matter of about half an hour but it meant everything else had to be pushed back. He’s generally unflappable but we can see these types of situations are very stressful for the staff. During some of the more dangerous meds, we practically have a nurse in the room with us all the time, watching for any strange side-effects and constantly doing observations. It’s very tense. 
 
I realise we didn’t provide an update on the possibility of brain radiation. It’s a long and complicated (and emotional) story. The short story is we’re not doing it because it can’t be determined if it’s actually necessary; the side effects of ‘significant irreversible cognitive decline’ are life-long and too risky for something that is not indicated; and there is no evidence to show that it would benefit AML in the brain (even if it were still present). The fact is that AML in the brain like Ellie had is so rare that nobody in the Kids Cancer Centre has ever seen it that we’re aware of, and there is no data on its treatment. Experimentation on the brain, knowing the cognition side effects is not something we’re comfortable with.
 
Despite everything happening, we’re impressed with Ellie’s attitude. Everything is a struggle – meds, mouth care, showing, toilet – but she’s doing it all the best she can.
 
D-0, Transplant Day is Monday 4th July.
 
PC[...]

Hi Friends and Family.

We admitted yesterday, Monday 27 June, around 2 PM. It was a very different feeling walking on to C2West this time around. We were greeted like we were walking into a resort. "Ah...Ms and Miss Carter. We've been waiting for you! So glad to see you have arrived. Let me show you to your room. Bed 18. This way!" And then nurse Amy, who we know so well, says, like the resort hostess, "Have you been familiarised with the plan?" We'll commence the conditioning plan shortly. In the mean time, settle yourselves in and I'll be back shortly". Perhaps like a resort...but one I wish not to be at. [...]

We recently had the final BMT coordination meeting with the head oncologist which went for over 2 hours. I feel like I aged about 5 years over those two hours. It was draining but we now have (almost) all the information we need before commencing conditioning week on 20 June.
 
The last piece of the puzzle is the brain complication. We will have a meeting with the head radiologist next week to discuss whether Ellie should have brain radiation prior to BMT. This is because of the unknown matter (suspected necrotic tissue) where the AML chloroma used to be. Our understanding now is that it’s a question of whether the juice is worth the squeeze. Brain radiation comes with its own list of serious side effects. Given we don’t know if there are active AML cells in the brain, it could all be for nothing and result in more long-term damage. We’re not comfortable with radiation unless absolutely necessary but it’s a conversation we need to have.
 
As for the bone marrow transplant. BMT is fascinating and terrifying at the same time.
 
Ellie is scheduled for the transplant to occur on 27 Jun; D-0 (I didn’t make that up, it’s how BMT events are tracked). Pre-transplant conditioning week starts at D-7 and the whole process is expected to take around 6 weeks. For that time, Ellie will be held in protective isolation in a pressurised isolation room to minimise the risk of exposure to practically everything. The slightest bacteria, even normal bacteria on her own skin or food will result in infection which will have severe consequences.
 
Prior to conditioning week, Ellie will have baseline testing on her heart, brain, lungs, kidneys, eyes, teeth, and hearing. This is because the chemotherapy and most of the other medications she needs have serious side effects, including major organ failure. This is a serious worry for us and is why they describe BMT as being a critical turning point in treatment. In theory, BMT will cure the cancer and it’s our last option; the focus then changes from fighting the cancer to surviving the transplant.
 
The theory
 
From around D-6 Ellie will undergo Myeloablative chemotherapy, receiving ‘huge amounts’ of Busulphan and Cyclophosphomide chemotherapy, and Anti-Thymocyte Globulin (ATGAM) to completely destroy her bone marrow. This is different to previous chemotherapy which attacked the AML cells and healthy cells in the blood and CSF. The purpose of destroying her bone marrow is to wipe out her immune system to prevent her body rejecting the graft cells. A healthy immune system would recognise the graft cells as foreign and quickly destroy them. The first week of treatment is generally well tolerated until her bone marrow is wiped out and side-effects start to kick in.
 
Myeloablative therapy does three things: makes space for the new cells to grow, is the last attempt to destroy any residual AML cells, and gets rid of the immune system. While Ellie is in morphological remission (no AML detected), there may still be residual AML cells in her blood. If there is even one AML blast cell remaining at the time of transplant, the transplant could fail in terms of curing the cancer.
 
When the bone marrow is destroyed and Ellie’s immune system has shut down, she will essentially be kept alive by several medications and through isolation. The transplant occurs by injecting around 25ml of graft stem cells into her central line over a couple of minutes. Apparently, aside from a terrible taste and smell which generally brings on immediate vomiting, the actual transplant is anti-climactic. In simple terms, the graft cells slowly make their way to the long bones and bed-down for around 2 weeks until engraftment commences.
 
During the period in which engraftment hasn’t yet occurred is when Ellie will be ‘extremely sick’. She’s guaranteed to be febrile, vomiting, have mucositis, need morphine, naso-gastric feeds, and total parenteral nutrition (TPN). Hopefully this just lasts a few weeks. We have seen her extremely sick during initial induction therapy in 2021 however, the team keep reinforcing this point to us. We understand their way of communicating well enough to know we need to brace ourselves for this period. Plan for the worst and hope for the best sums up BMT.
 
The average time for engraftment to commence is 14 days. Once engraftment commences, the theory is that the graft cells begin to generate new (healthy) white cells to build a new immune system, replacing the destroyed system. At the same time, they could recognise any residual AML cells as foreign, and attack them as the immune system grows. However, this is not guaranteed and there is no real way of knowing if this occurs.
 
During engraftment, and up to D+100, one of our major concerns is Graft v Host Disease (GvHD) which is where the graft white cells recognise they’re in a foreign body and start to attack Ellie’s healthy cells. This can result in major complications and is life-threatening. That said, there is a balance in GvHD because it is also what can result in the destruction of residual AML cells (Graft v Leukaemia effect (GvL)). The optimal result is a small degree of GvHD but not too much. It was described to us that there are benefits to GvHD however, we would never attempt to promote/stimulate it with specific medications in BMT because the risk is too high.
 
If everything goes well, we should see Ellie start to turn the corner between D+21 to D+30 where her cell count begins to increase. Engraftment success is determined by neutrophil count of >0.5 for 3 consecutive days. When released from isolation after around 6 weeks, or when her counts have sufficiently recovered, and providing there are no other major complications, she will be released to come home for the majority of her recovery. During this period, she will need to attend clinic appointments at the hospital 3 times per week for the first several months and this will eventually taper down. Her central line can be removed (again) after about 3 months. She will need to remain isolated at home for 6 months and cannot attend school or any populated places until her immune system has recovered. The oncology team has described her immune system as transitioning from a baby to a toddler during this period. After this time, she should be able to build-up to recommencing school however, the entire recovery period is thought to be 12-18 months.
 
What could go wrong?
 
On the face of it, the whole process seems reasonable. We can do another 8 months in isolation – no problems at all. Unfortunately, there is considerable risk of major complications during transplant. As I said before, the focus switches from fighting cancer to surviving the transplant. This is not only due to the transplant itself, but several dangerous medications which can lead to major long-term health problems.
 
Aside from all the standard side effects of chemotherapy, some of the more severe complications Ellie is at risk of include veno-occlusive disease, capillary leak syndrome, cytomegalovirus, and major organ failure; particularly respiratory, heart, and renal failure. Many of the more dangerous medications and chemotherapies are particularly harsh on the heart, lungs, and kidneys. Complications in the major organs could occur early, or onset later in life, so we will need to be vigilant in monitoring for symptoms and be prepared to manage life-long chronic conditions.
 
Transplant rejection is concerning however, we have been reassured it is highly unlikely due to Ellie’s immune system being in such a poor condition. Transplant rejection (different to GvHD) is when Ellie’s immune system recognises the graft cells as foreign and attacks them, causing the transplant to fail. This would mean we need to repeat the transplant with the backup umbilical cord which I spoke about in the previous post. Given the state of Ellie’s immune system, it’s unlikely she has the ability to reject the graft. If by D+25 there are no signs of engraftment, the team will start planning for transplant with the second cord.
 
GvHD is of more concern to us due to the likelihood of occurrence. We understand it almost always happens however, the degree varies significantly, and it could commence early, or within 100 days of transplant. GvHD more commonly attacks the skin, liver, and gut. It can present in mild symptoms (grade 1 GvHD) such as mild skin rashes, to life-threatening (grade 4 GvHD) severe skins conditions, and severe liver, stomach, and intestinal problems.
 
Our head oncologist described managing the transplant and treating the side effects as walking a tightrope. To me, it seems more like an impossible balancing act, on one leg, while juggling a dozen knives blind-folded. For every major complication or side effect, there is of course, medication to treat. However, each medication has side effects that are just as bad, or worse, and so there is another medication to counter the last one, and so on.
 
For example:
 
Cyclosporin is used to treat GvHD however, damages the kidneys and can result in kidney failure.
 
Cyclophosphamide is critical in conditioning therapy to prevent transplant rejection however, damages the lining of the bladder and can lead to haemorrhagic cystitis, for which there is no treatment. It also increases the risk of heart damage, lung damage, and secondary cancers.
 
Busulphan which is also critical in conditioning therapy, can result in seizures, veno-occlusive disease, and lung fibrosis.
 
Most of the antibiotics and anti-fungals (which Ellie has taken since the start) help to prevent serious infection however, also result in impaired kidney function and drug-induced liver injury.
 
It certainly feels like the calm before the storm. Ellie feels good right now, happy, chatty, and cheeky. Knowing what we’re about to put her through is very unsettling.
 
The silver linings
 
In our last post, we explained that Ellie will have stem cell transplant from umbilical cord blood (UCB) which came from the US and is a perfect 8/8 HLA match. We now know the age of the cord, being from 2018. An HLA matched umbilical cord is about the next best thing after a matched sibling donor. While studies show that events of chronic GvHD and organ complications are least likely with a matched sibling donor, matched UCB is next best when compared to other donor methods.
 
We also learned yesterday that UCB transplant is not commonly done in Australia. In fact, our team at the Sydney Children’s Hospital, Randwick is the only team in the country that routinely does it. There are only 4 hospitals that can do it (Randwick, Westmead, Brisbane, Melbourne) though not all routinely. This is because the Randwick Kid’s Cancer Centre has a habitual relationship with the Minneapolis Pediatric Cancer Center whereby, they send oncologists to learn UCB transplant. Our team now have over 25 years of UCB experience. They are convinced UCB transplant is the future of HSCT in paediatric AML and they’re in the process of publishing a study which presents the favourable data. We’ve read some of it and the data is encouraging.
 
While the reality of BMT makes for some tough reading, there are silver linings to be found. At the end of the marathon meeting, I asked the head oncologist to end on a high note with some good news. He started by saying “we have a fairly good chance of pulling this off.” He followed up with several other highlights however, I was distracted by thinking how terrible his choice of words was.
 
From our perspective, we’re fortunate that we have the opportunity for transplant because Ellie achieved morphological remission and because of advances in modern medicine; we’re lucky to have one final chance at curing Ellie’s cancer; we have a great 8/8 HLA matched umbilical cord donor; we have the best health care team looking after her, and the only team who have UCB donor experience; and we have the continued love and support of our family and friends which is honestly, what keeps us going.
 
We know Ellie will continue to fight hard, like she always has, and will beat cancer again.
 
PC[...]

Ellie has improved over the last week, with her post-chemotherapy symptoms stabilising. She no longer has persistent fevers and after taking eye drops up to every two hours (while awake and through the night) her chemical conjunctivitis subsided. We are now waiting for her blood counts to recover and neutrophils to re-generate in hopes that she can come home for a week or so before we commence BMT conditioning week.
 
We have now locked in the BMT dates (6 weeks commencing 27 June plus one week of conditioning commencing 20 June (more chemo)) and have a fairly good idea of what we might be in for. We had a 1.5 hour meeting with the transplant coordinator which was very helpful, and read the 120 page BMT book on what to expect. It’s a sobering read; I don’t recommend it. Next week we will have the final information and coordination meeting with the whole oncology team to go over how everything will work.
 
The thought of BMT is extremely daunting and I will save the details for a separate post after our final meeting next week. However, what we do know is that Ellie was matched with a great cord doner which is a better outcome than a typical harvest from mature bone marrow. This means the stem cells will be drawn from a frozen umbilical cord which was described to us as ‘pure, rich goodness’. The cord donor is from a little girl in the USA and is an 8/8 Human Leukocyte Antigen (HLA) match or 100% HLA match. Often, BMT is conducted with partial matches if a perfect match cannot be found. Apparently, the team were offered a partial 7/8 match which they tentatively accepted, pending finding a better match. The partial matching donor cord will now be held in reserve in the event that Ellie’s body rejects the initial transplant. We’ve been told this is highly unlikely due to the amount of chemotherapy she has already endured (notwithstanding the additional chemo she needs to have during conditioning week) and it’s believed that her immune system will not have the capacity to fight and reject the donor stem cells. Interestingly, Ellie being O Pos and the donor being O Neg means Ellie’s blood type will not change.
 
Aside from the daunting thought of enduring BMT, we also have a degree of anxiety over Ellie’s neurological situation. She had her second MRI this week and while the results were good, they are not definitive. I have attached a photo of her before and after shot MRI. You can see in the before (right picture) the large chloroma mass. This was a significant chloroma of AML cells surrounded by haemorrhage and swelling which cause the brain to shift (seen by the midline movement right). The after shot (left picture) shows significant reduction in the mass, and repositioning of the brain. The residual lesion (small black sphere LHS) is described in the MRI report as appearing to be an ‘ill-defined area of slightly hypo-intense signal.’ This is PhD speak for ‘we don’t know what it is, but it looks better than it did before.’
 
The assumption is that systemic and intrathecal chemo has destroyed the AML cells and what remains is necrotic tissue. If true, that’s great. But there is no way of knowing if there are active AML cells without biopsy. We’ve been told biopsy is too risky because of the extremely difficult position of the legion.
 
Our concern is that if we put Ellie through the torturous BMT to (hopefully) cure her of blood cancer, she could still have cancer in the brain. This is clearly not the ideal situation going into BMT. Our understanding is there isn’t much else we can do about the brain right now and we need to focus on BMT. Brain surgery hasn’t been discussed with us in any detail yet and it’s not something we really want to think about.
 
We will hopefully have more information on our options to treat the brain, and final confirmation of BMT details next week. We will keep everyone updated.
 
PC[...]

It’s been a rough couple of weeks for poor Ellie. She’s really feeling the effects of the chemotherapy this time around. She recently finished a five-day course of high dose Fludarabine and Cytarabine (FLA) and her counts have almost hit the bottom of the trough. She has been febrile for over a week and very symptomatic. Her most obvious symptoms are constant nausea (though thankfully not much vomiting), chemical conjunctivitis (caused by high dose cytarabine), and fatigue. She is also retaining a lot of fluid, particularly in her face which is very swollen, especially on the right side where her right eye is almost swollen shut. When Ellie is feeling these effects she starts to shut down, so she’s largely been non-verbal, and when she is verbal, it’s not pleasant! I don’t blame her though; I would be the same if I was that sick.
 
Given Ellie’s constant fever, the team was concerned that she had another infection. However, after four tests, nothing has grown on the blood cultures, so they have now tested for a viral infection, but we likely won’t see the results for a couple more days. We think it’s unlikely she has a viral infection and is more likely to just be the effects of the cytarabine.
 
It’s a fine balance to determine how much chemotherapy to administer in relapsed AML. I have previously said that the treatment plan in 2021 was all per the MyeChild protocol so we were well prepared. After relapse, there isn’t a set protocol and its dependent on the individual and how they respond. When the team told us the plan for one round of FLA(G) and then maybe a round of FLA, we questioned why they weren’t planning on stronger options to ensure Ellie stays in remission. It was explained that last year she was essentially given as much chemo as the human body can handle which is much more than adults are given. Now she needs more. So, it’s a challenge to find the balance – just enough to achieve remission, but no more to reduce the risk of significant long-term issues. The cumulative effect of chemo is now obvious to us given Ellie’s reaction to FLA when she handled it quite well in the last two phases of consolidation therapy last year.  
 
We still don’t know a lot about the bone marrow transplant however, we should have a meeting with the donor team soon. The head oncologist indicated that we have a ‘cord donor’ lined up for Ellie which is great news. Stem cells taken from an umbilical cord reproduce into mature, functioning blood cells quicker and more efficiently than stem cells taken from the bone marrow of a donor. This is reassuring given none of us (immediately family) were suitable matches for donating bone marrow.
 
This is a useful link to understand the basics of bone marrow transplant: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/bone-marrow-transplantation
 
We have lots of questions for the donor team and transplant team, and are anxious to know more. However, as our team keep telling us – one step at a time.  
 
PC[...]

We finally have some good news to share: The results from Ellie’s Bone Marrow Aspiration (BMA) confirms there is no identifiable presence of AML cells. This means she has achieved morphological remission after the first round of chemotherapy since her relapse.
 
This is great news and a sigh of relief for us as we know that remission status immediately prior to bone marrow transplant (BMT) is an important prognostic indicator. We also knew that it would be more difficult to achieve remission after relapse compared to first diagnosis.
 
We have been quite anxious over the last week because the BMA was conducted when Ellie’s bloods were ‘borderline’ for the test, meaning the medical team were taking some risk conducting the BMA last week instead of waiting for her counts to recover more. This risk was taken because it is important to get moving with the next course of chemotherapy and Ellie’s bloods were a little slow to recover. If the sample wasn’t good enough, she would have to repeat the BMA to gain a better sample which could be tested more accurately.
 
We were told after the preliminary results of the BMA that the team ‘thinks’ the sample is good but also that it showed a 2.6% cluster of suspicious cells. These were either AML cells or just immature regenerating healthy cells, which look similar under the microscope in the manual laboratory count. We had to wait for the Flow Cytometry testing to confirm. We were also anxious as Flow Cytometry is not as sensitive as PCR which is how they tested last time when Ellie was on the MyeChild clinical trial (Flow up to 1:100,000 vice PCR 1:1,000,000). It is still not entirely clear to us why Flow is used over PCR however, the literature shows Flow is much more common/applicable and there is no clear ‘standard’ of testing as each test has strengths and weaknesses.
 
On Friday, we received the good news that Flow Cytometry did not find the cytogenetics (inv(16)) characteristic of Ellie’s AML within the cluster of suspicious cells, confirming they ARE immature regenerating cells and therefore declaring Ellie to be in morphological remission.
 
As I have said, this is great news. However, we are finding it difficult not to question every decision and not become cynical. Why not wait to do the BMA later? Why not commence chemo earlier? Why not PCR over Flow? Was the BMA sample really good enough? Exactly what is good enough? Should we repeat the sample? Do we actually have certainty that all of the suspicious cells are healthy? Why are we relying on lack of evidence of inv(16) rather than positive confirmation that every cell in the sample is mature and healthy? These are the questions constantly running through our heads.
 
Nevertheless, we’ll take all the good news we can get, and continue looking for the silver linings.
 
Ellie and Annabelle’s new school – St Andrew’s Catholic Primary School – has already been incredibly supportive. It’s unfortunate that Ellie only just completed Term 1 in her new school before relapsing. However, a number of parents have been so generous and thoughtful to reach out for support. From helping with school drop-off/pick-up for Annabelle; looking after Annabelle at school; establishing a meal-train which was shared across the whole school; and teachers who have gone out of their way to include Ellie through Zoom and online learning – we feel very fortunate to be part of such a supportive community.
 
We have also been lucky to have Ellie home while her bloods have been recovering. It’s so good having her here – for her mental health and for Annabelle to be able to play with her sister again. We’ve been taking Ellie to hospital regularly for lumber punctures and intrathecal chemotherapy but she’s handling the disruption very well. After around six lumbar punctures this course (10 if you count the ones that didn’t work), Ellie’s cerebral spinal fluid (CSF) is now clear of AML cells. It is also believed (but not confirmed) that the AML in her brain has been cleared. There’s really no way of knowing this until she has another MRI in a couple of weeks to see if the chloroma has dissipated. At this stage, there’s no talk of biopsy or other brain surgery however, that will all depend on the outcome of the MRI.
 
While there are no longer detectable AML cells in Ellie’s bone marrow and CSF, it doesn’t change the plan for her treatment. Next week she will commence course two of high dose chemotherapy, followed by bone marrow transplant, likely in about 4-6 weeks. We still don’t have much information about the BMT and are hoping more info will come next week.
 
For now, we’re enjoying having Ellie home for the last couple of days, continuing to think positive thoughts, and searching for the silver linings in every situation.
 
PC[...]

Firstly, Ellie is clinically doing well. She’s eating, playing, taking oral medication, communicating well, and is generally in good spirits. This alone is a big win for us in contrast to her first admission in Feb 21. 
 
However, she is starting to feel the effects of the first round of chemotherapy now and is regularly febrile due to having her first infection – Enterobacter cloacae which, is confirmed to be in her central line and her blood but is being treated with high-dose antibiotics. We know from last year this is just the norm when her blood counts are low – which they are and she has zero white cells and neutrophils. We’re now playing the waiting game for her counts to recover over the next four weeks, where the aim is to avoid infection. We know she may still get infections but we hope they are the less-serious ones that can be easily treated with antibiotics.[...]