real life

A mum's touching letter to her child with cancer, on the day of his last chemotherapy treatment.

To My Darling Milan,

One day you may not remember and my memories may fade with time, I can keep the images inside my head so you don’t have to, but I want to tell you a story for when you are older and you want to know why you have scars.

Behind your beautiful big brown eyes and long paintbrush eyelashes, cheeky smile and infectious laugh is an incredible story.

One of bravery, of an everyday superhero; my hero, my son.

What a miracle you are.

Like most kids your age you have a lot of dreams; to be a teacher, an artist, to travel and to be on TV, to one day visit Disneyland and of course to be a Superhero (even though I tell you everyday that you are one).

But more importantly are the things that you would love to do, all the normal things that kids your age do-like attend school every day, play sports and go swimming, to play with friends and not to have to take yucky medicine or have finger pricks and insulin needles.

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You were born with Congenital Hypothyroidism, so ever since you were born you have had blood tests and medicine and had hospital appointments. When you were two you needed grommets for glue ear, and when you were three you broke your foot from playing with your cousins.

In June 2012 your big sister and big brother and I moved to Melbourne to join Daddy who had moved months earlier for work. We were in search of a new beginning. We arrived with one suitcase each of our most favourite and treasured possessions – all that we had left, and moved into an empty little house.

I began looking for a job, but you became ill and deteriorated very quickly. After many visits to our GP and constantly being turned away, being told that you just had a ‘flu’ that had affected you more because of your compromised immune system and being exposed to germs in a new country. We were also turned away from Emergency at our local hospital on a Saturday night, given a pamphlet about fever from a very condescending Doctor, I had nearly convinced myself that I was crazy.

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But my son you were desperately sick, you could no longer walk, your little legs hurt so much, as well as having fevers, night sweats, vomiting and screaming in pain through the night because of your tummy and legs. By this stage you had also come out in tiny bruises up your shins, but the emergency Doctor smugly said it was just a flu and ‘not worth putting you through a blood test for”, even though you were no stranger to them. So on the following Monday I went back to our GP and demanded that you have one, even then he assured me it would be nothing , I knew in my heart it was something. I felt that my little boy was dying before my eyes.

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The next morning I got a call to say I had to get in to the clinic as soon as possible for your blood results. I walked the big kids to school and then took you down to the clinic in our push chair. Then the words no parent ever wants to hear, confirming my worst fear “your son likely has leukaemia, he has almost no good blood left you must go straight to The Royal Children’s Hospital for further tests”.

My head was spinning all I had known about leukaemia was cancer and didn’t that mean you were going to die? My beautiful little sweet boy. And then the guilt like a big hard bang in my chest – should I have taken you to the Royal Children’s Hospital sooner? – but I was told over and over by medical professionals that I was over worrying and even our local hospital hadn’t admitted you.

Rushing to the hospital I’ll never be able to forget the feeling of absolute overwhelming sadness. Once in emergency more tests were done, you were admitted and given blood transfusions and that night you had your first Lumbar Puncture, Bone Marrow Aspirate and you started Chemotherapy straight away. The Doctors and Nurses at The Royal Children's were incredible, they reassured Daddy and I that there was nothing we could have done, and no way we could have known.

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We were told later that night that you had pre b cell Acute Lymphoblastic Leukaemia, you would need three and a half years of treatment which included chemotherapy, lumbar punctures, blood transfusions and much more. There were different stages of treatment and each stage required different types of medicines. You would lose your hair, and become very ill, but of course these were just the usual side effects.

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Although even knowing this in advance and expecting it to happen, it was never easy watching you suffer, you were so sick and so weak and so tiny. Each time you had a lumbar puncture I would come into the room with you and help you as you put your chosen flavour into the mask – you had your own flavours, your favourites were vanilla Coke and Fanta. You would hold your mask yourself and we would talk and laugh until you fell asleep, I hated that part just as you drifted off and your face would drop and I had to kiss you on your head and walk away. The waiting was the worst part, even though it became so routine to us.

Your journey has not been an easy one bubba, hospital became our second home, during your treatment you have had many infections, reactions and illnesses. In the beginning Daddy couldn’t take any time off work as he was on a casual wage at his job and we needed to pay rent and bills so he juggled work and your sister and brother, and I took full responsibility for your care, Daddy was the sole earner for our family which must have put so much stress on his shoulders, but he took it all in his stride and never once complained. Your sister was an incredible help to us also.

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In January 2013 things took a turn for the worse after having an anaphylactic reaction to one of your chemotherapy drugs. You spent a night in hospital and then all seeming well they sent you home. A week later you woke crying in pain and after not responding to pain relief I rushed you to hospital, you were curled up in so much pain and screaming. It was horrifying.

I was told you had Severe Acute Pancreatitis and nothing could have prepared me for the suffering that was to follow.

Milan in hospital. Image supplied.

That night you were screaming out in pain, you didn’t want me to leave your side – of course I wouldn’t – I never had. The pain relief wasn’t working, I just felt completely helpless. Early the next morning your little body suddenly went into Shock, your heart rate rose to 256 and your blood pressure dropped well below normal. The room filled with people so quickly, Milan you were just so small and blue-grey lying there surrounded by the Medical Emergency Team, not responsive as you were being pumped full of glucose as you needed fluid resuscitation and an incredible Dr was putting in needles and lines all over your tiny body as he worked to make you stable enough to go up to the ICU.

I vaguely remember the Dr telling me I needed to call someone to be with me but I think my feet were frozen to the floor.Your body became extremely swollen as all your organs became affected and your colouring became very black from the internal bleeding, this was caused from the necrosis of your pancreas. You needed to have oxygen and be in a drug induced coma as you fought through it. I didn’t even think about taking photos of you in the ICU but those images will never leave my mind.

With lines coming out of both arms, feet and port and there were so many machines. You needed blood transfusions and different infusions, a lot of everything, more than I could remember.

I didn’t sleep for about 72 hours. I couldn’t leave your side - I was too afraid if I left you would die without me there.

As your mum so many thoughts go through your head, you reflect on everything – have I told you I love you enough? Have I made you smile and laugh enough? Have I played with you and read to you enough? Have I made you happy? Have I counted all your freckles? Will I remember how you smell and the sound of your voice? Have I pressed you into my memories forever…

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When I finally slept it was sitting on the floor of the parent’s room for two hours.

When you came out of the ICU days later you were moved back into a ward where you stayed for two months, we decorated your room and made it home. I would stay awake to watch you breathing and I would only allow myself to sleep in two hour intervals, a habit I haven’t been able to shake.

In the beginning you were not allowed any food, not even water. Eventually you were put on TPN and lipids and then later had feeds through a nasal gastric tube which you had until late 2014. You needed a lot of medicine and pain relief, ultrasounds, constant blood tests, finger pricks and insulin. You had developed Steroid induced diabetes which meant you were now insulin dependent. You also had a clot on your spleen and a pseudo cyst on your remaining pancreas.

Slowly, week by week you were healing but required around the clock care, and physiotherapy helped to keep your muscles strong – you still have muscle weakness in one leg to this day.

I would carry you to the bath and bath you like a baby with all your machines and all lines attached which could be quite tricky but you always smiled and never complained. You were in nappies and also got such bad mucositis (for the second time) right through your body which caused you so much pain and discomfort.

There is so much involved with the care of children in oncology, it would take pages and pages to fully explain everything so I’ll save that for when we talk about it in the future! The Doctors and Nurses in The Children’s Oncology ward at RCH are all incredible.

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I only stayed away from you for one night that whole time, visiting our house one time in two months at one point. Daddy and your sister and brother were visiting at least every second day but sometimes they would come every night. We used to joke that Milan’s hospital room was our inner city apartment. You loved it so much when we were all together.

Milan your bubbly, cheeky personality shone through the whole way and you built lovely relationships with the nurses and doctors, music, art and play therapists and by the time we were allowed home I think they will have all missed you.

We basically had our own hospital at home, your bed was in our room and you had to have all your medicine, finger pricks and insulin and nasal gastric feeds. Days, weeks and months past and as you slowly got better the day came we were told you were in remission and you began the maintenance phase of treatment. This meant oral chemotherapy and other medication daily at home, monthly hospital appointments at Day Oncology for blood tests, chemotherapy and check- ups. Three monthly lumbar punctures and steroid cycles every 28 days which for you meant you needed more insulin as we battled very high blood sugar levels. Steroids also meant you would be very hungry and crave particular foods. You would be tired, irritable and easily upset, and feel very sick. (It would also result in many tantrums in public!)

Your sister learnt to do your finger pricks and came to nearly all of your appointments, chemo and surgeries.

Chemotherapy results in having low immunity which makes you more prone to infections and sickness. You had shingles in January 2015 from coming in to contact with the Varicella Zoster Virus (chicken pox) which resulted in another hospital stay and at this stage you still have to take Antiviral medication every day, for at least another six months.

As the end of treatment approached I received a letter that you were on the surgery list to have your port removed and I burst into tears. Not happy tears, but full blown snot bubbling, unattractive tears and you laughed!

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You see three years of my babies life were stolen from which you will never get back and it somehow comes down to the removal of a foreign object from your body which will leave two scars, one on your neck and one on your chest and the cease of chemotherapy.

My stomach was churning with fear and dismay, with confusion.

Then Milan my darling in October – just before your baby brothers first birthday you developed a fever, became unwell your neutrophils were low so you needed to be admitted in hospital once again, this time a blood infection and you needed to have the port removed earlier!

Three years ago my baby had this port put in and then it’s taken out, just like that – well of course not without complication! Thankfully once it was removed you made a full recovery and we were able to go home.

Which brings us to today, at 10.20pm on the 20th of November 2015, the end of this story, the beginning of the next one.

Image supplied.

I can finally allow myself to imagine a future.

We will need to discover together what life means in this new “normal”.

It feels as though there should be some grand celebration with fireworks and a colourful parade and trumpets playing but truly treatment just stops, almost silently as it all comes down to two little tiny yellow pills, one oval and one circular.

You have taken them tonight, your final chemotherapy just like that, in the lounge room of our home on a rainy, grey November day.

You would almost not believe you were the same boy who had to fight so hard to live – if it were not for those big brown eyes, long paintbrush eyelashes and that cheeky laugh.

Our Super hero, our little tornado.

Our Milan.

Have you dealt with a child with a serious illness? How did you cope?

To find out more about Milan, like his Facebook page.

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