Alyssa's Journey through Leukemia

In August 2010, Alyssa May Miller, at the age of just 10 months, was diagnosed with Infantile Acute Lymphoblastic Leukaemia. Due to her young age at diagnoses, the medical team sugguested that she would have a 40-50% chance of surviving the condition and her treatment is expected to consist of around 2 yrs of chemotherapy &/or a bone marrow transplant which is all complicated by possibly being susceptible to Malignant Hypothermia (allergy to anaesthetic), a hereditary condition.

Having your daughter diagnosed with Leukaemia can best be described as being hit by a freight train, things are smashed backwards for kilometres and there are thousands of pieces to be picked up, and some things will never be put back together again. After being told this devastating news, one of the greatest challenges we faced as a family was to get some sense of control back into our lives.

For the first couple of months we grieved - both for what Alyssa was going through and the perceived loss of our old life. It would have been easy to fall into the trap of feeling resentful towards friends and family who wre living a normal life, while our world literally felt like it was spinning out of control, but we decided to supress those feelings and not fall into the downward spiral to depression and marital problems but to focus on keeping Alyssa positive whilst fighting for her life.

It wasn't onlu us we had to think about, it was also the unknown effect it would have on Alyssa's big sister Madeleine who had only just turned 3. We oftenasked ourselves "How much do we tell her", she would often find us in one of our many moments of despair and we would be speechless, unable to tell her that "everything was going to be ok", we worried about her feeling jealous, anxious and alone.

One of the first questions that people askus is "how did you know Alyssa had Leukaemis?" Well, we didn't. We took Alyssa to our local GP as she had a high temperature, but with no other visible symptons we were sent home and told to bring her staright back if any other sympton arose. After several days of high temperatures a rash appeared on Alyssa's ankle, so back to the doctors we went, the doctor told us to go straight to the hospital suspecting Meningococcal.

Les than 12 hours later we were told by Campbelltown hospital that Alyssa had Leukaemia and for us to quickly head home and pack some essentials then make our way to the Sydney Children's Hospital in Randwick, were Oncologist Tracy O'Brien would be waiting for us.

Due to her young age, we were told that statistically Alyssa had a 40-50% chance of surviving the condition and that there was a high chance that she would not make it to her 1st birthday. We quickly went from knowing absolutely nothing about Leukaemia, to needing to knowit all. Terms like Central lines, Plateletes, Neutrophils, plasma and white cell counts, just to name a few, fromed part of our new vocabulary, as we strived to learn our part in getting our daughter through each day.

The Sydney Children's Hospital is both a frightening and inspiring place. Everyone you meet has an amazing story tinged with both fear and hope. The common link is that no one expected to be there and everyone prays that their life can eventually get ack to something that resembles normality. It is an inspiring place because of the courage and devotion soen by the children, their familiesand the wonderful professionals who work there.

Alyssa's 1st surgery and Chemotherapy comenced on 29th August 2010, then after over a month of chemo in hospital, 5 x blood transfusions, 4 x platelet transfusion and 1 X Plasma transfusion, Alyssa was finally allowed to go home over the October long weekend to celebrate her Birthday.

In Februaryl 2011, the medical team advised us that the treatment was not having the desired effect, so a Bone Marrow Transplant was the only option. The bone marrow transplant required us to be in medical isolation for around 3 months, during this time our only contact with our other daughter madeleine was through Skype and telephone calls.

On 11 April 2011 Alyssa (with her Parents Scott & Amanda) went into medical isolation, at Sydney Children's Hospital in Randwick, to comence the conditioning period the following day. The conditioning period consisted of 1 day of preventative antibiotics (day  minus 9) and 8 days of lethal doses of Chemo (Days minus 8 to minus 1).

The Stem cell Transplant took place on 21 April 2011 (classed as day zero), in Alyssa's Isolation Room.  The 2 weeks following the transplant were an extremely critical time, where Alyssa had no immune system while the new cells were finding homes and begining to grow. During this time transplant patients are also susceptible to infection from normally harmless pathogens which live in our bodies.  At times Alyssa had a ben on Stand-by for her in entensive care and even required surgery to have her lungs flushed.

The transplant grafted on May 5th 2011 (‘Day 14’), and on the 8th June 2011 (‘Day48’) Alyssa was discharged from full-isolation in the Sydney Children’s Hospital to semi-isolation at Ronald McDonald House.

Our Oncology team gave us approval to head home for the day to celebrate the 4th birthday of her older sister Madeleine on the 18th June 2011 on the condition that Madeleine was the only child that she came into contact with. Then on the 23rd June 2011 ('Day 63') we were told we could go home but would have to return 3 times a week for blood tests and medical assessments.

Although it is great to be home, it is also quite an anxious time as her immune system is still suppressed and will remain suppresses for a varying period of time which will need to remain closely monitored. Therefore Alyssa must avoid contact with as many people as possible, especially avoiding public transport public playgrounds and shopping centres etc.

The "100 Day mark", which is 100 days post-transplant, is generally considered a milestone - by this time patients are considered past the worst of the procedure and on the path to recovery. Full recovery is slow, with it taking up to 2 years for the patient to return to full heath.

Alyssa's Transplant was not without it's complications, there were many sleepless night by both her and us, which included a life threatening infection requiring her lungs to be flushed in surgery and a bed on stand-by in intensive care.

Alyssa is currently in remission and we pray every day that the worst is behind us. One of the greatest difficulties in being a parent with a child, in remission from cancer, is that you cannot get rid of this terrifying fear that sits just below the surface, of will the cancer return. We still become anxious with blood tests every month, despite the fact that she appears to be doing well.

Looking back, there were so may nights when we were in hospital that we would lay awake and just watch our beautiful daughter with bags of blood, antibiotics and chemotherapy going through her body and would just pray that she gets well and that our lives can return to something that resembles normal, but it was also these moments that we discovered ho fragile a life really is and that every little moment you share together as a family is extraordinarily special, for you never know wen it could be taken from you.

2012 has seen several unexpected hospital admissions with infections, our family holiday to Queensland count not even go without a 3 day stay in the Gold Coast hospital with fevers. The begining of May brought about our first real scare of relapse with Alyssa being admitted with fevers of an unknown origin. Blood counts were done and something was not quite right. Our Oncologist went on to say that we had her attention, words that we had only heard once before and that was post transplant when we almost ended up in ICU. More tests were taken, and with Alyssa clinically improving we were discharged for the weekend, to return the following Wednesday for a bloodcount and possible bone marrow test.. We arrived at the hospital and we were unussually calm thinking theat she seemed too well in herself for anything serious to be happening. Blood counts came back perfect, another bullet dodged but again brought back that feeling about fragility of life.

Although 5 years post transplant will be a huge milestone, she will stillbe rquired to have annual tests for most of her life.

Some of the side effects of transplant and chemotherapy can occur much later on in life, some of the things that may be affected include fertility, Learning, teeth, kidneys, lungs, eyes and at risk of developing secondary cancers, so we still have a long way to go, but with the support of family, friends, our local community and the staff at the Sydney Childrens hospital, we know we are not on this journey alone.

Alyssa with Nicole Kidman at the Sydney Childrens Hospital
in December 2010


 The Miller family with Nicole Kidman at Chanel 9 for the
Sydney Childrens Hospital Gold Week Telethon in June 2012

Gold Week Telethon - Channel 9
Monday 11 June 2012

The Gold Week Telethon is an all-day live broadcast on Channel Nine, raising vital funds for the Sydney Childrens Hospital and features our favourite Channel Nine personalities, inspiring stories from Hospital families and staff, a live studio audience and performances by some of Australia’s top music acts.

Each year Sydney Children’s Hospital, Randwick touches the lives of more than 300,000 children from across NSW and beyond.

In 2011, thanks to your generosity, the 2nd Gold Week Telethon raised an impressive $1.68 million for the Hospital!

 The Leukaemia Foundation is calling on all angels – people who like to brighten the lives of others  – 
to Light the Night in September 2011 with lanterns of love, life and hope for people with blood cancer.