"You have Leukaemia."
Nothing prepares you for news like this.
You don't really know how you'll handle it until it's thrust upon you.
And "handling it" isn't a singularity...it's a daily strain / reaction / decision / struggle.
The thing that most will discover is, you are far stronger than you think.
As parents of Mitchell, our eleven year old boy, the experience, whilst not quite the same as for him, was (is) just as emotional and challenging.
Initially surreal, because it's one of those "it will never happen to us" scenarios, reality sinks in very quickly. The paediatric oncology ward is an eye opening, heartbreaking and, sadly, busy place that snaps reality into focus.
How did we find it?
Mitch had a cold that lingered a little longer than normal. By week 3 we decided that a trip to the doctor for some antibiotics was required to get rid of it. After 2 courses of penicillin (Augmentum) the cold gone but, what we thought was a reaction to the penicillin, large welt / rashes appeared on his chest, stomach and back. We treated these with some antihistamine that seemed to relieve it temporarily. One odd result, that followed the rashes, were what looked like tiny blood blisters or freckles, we now know these were petechiae, a common symptom of a low platelet count.
At about the same time as the welts, Mitch started complaining of sore joints and bones and then sore ribs. After a few days off school, ongoing bone soreness and a night of having to sit up to sleep because of the pain in his ribs, we decided a trip to the doctor for a blood test was probably best.
Lisa took him to our local doctor on a Wednesday for a blood test. We had a call back from the doctor on the Thursday morning saying he'd like to see us to discuss the results (never good). I left work after completing a meeting very preoccupied (basically saying "I may be back, depending...." and that's about it) and met Lisa at the doctors with Mitch. Lisa went in to chat to the doctors while Mitch and I stayed in the waiting room. After a few minutes Lisa opened the door to the doctors room holding back (more) tears and said I should come in. Mitch was busy reading and was reasonably comfortable. (I really wasn't sure how aware he was that anything was wrong).
Sitting down next to an upset Lisa to be told by the doctor what the results indicated, I think I said "So what does that mean?".
The doctor explained the results indicated Acute Lymphoblastic Leukaemia (ALL) and that we should head directly to the Royal Children's Hospital.
Whoa! With Mitch in the waiting room we couldn't break down and didn't want to alarm him. So we left the doctors room and told him we needed to go to hospital, possibly overnight, to have some more tests done. He seemed OK with that.
Day One
Mitch and I were at the hospital by lunch time and being guided through their emergency procedures to confirm the original blood work results.
With Emily having just started a year 12 induction week at her new secondary college and Brooke finishing her last few weeks of year 8 at Parkwood, Lisa stayed home while we decided how and when we were going to handle letting them know.
After more blood tests, seeing nurses, doctors, consultants, social workers and a play therapist, we had another doctor come in to our emergency ward room and ask Mitch whether he knew what was going on. He said "No". She said "We think you have Leukaemia". Tears. I guess there really is no easy way to say it.
Peripheral lines were put in and lots of fluids administered to begin flushing the kidneys and spleen....which was enlarged in trying to cope with expelling the excess white blood cells and explains the pain in his ribs.
Lisa and the girls arrived at the hospital sometime in the mid afternoon. More tears and lots of cuddles.
By early-mid afternoon we were taken to a room in the (near new) Children's Cancer Centre - Kookaburra Ward. That was the first time it really hit me....Mitch has cancer!
The RCH team are certainly a well oiled machine. Highly organised, very friendly, compassionate and accommodating.
After a few hours of resting and waiting the girls and I headed home while Lisa stayed with Mitch for the night. A lumber puncture and bone marrow aspirate were scheduled for the next day - day 2. Deep breath....
Day Two
Day 2 started with the procedure. A sample of spinal fluid was taken, precautionary chemo injected to control any Leukaemia that may be in the spinal fluid (and Central Nervous System) and some bone marrow taken to send to pathology (and the USA) for testing. Results of this determine initial treatment.
These results confirmed Acute Lymphoblastic Leukaemia - Pre-Type B with no sign of cancer in the spinal fluid and a "favourable" result on the DNA/genetics of the Leukaemia. All good results...in the scheme of things.
The most common type of Leukaemia, that they know the most about and have the best treatment and cure rates for.
Lisa headed home to change and begin the difficult task of informing family and friends what was going on. A tough gig.
After receiving the results from the mornings procedure I met with the nursing coordinator, doctors and the oncology consultant to discuss ALL, treatment, side-effects, etc. A stressful meeting with lots of information that was hard to take in. Fortunately they also provided copious amounts of literature.
Chemotherapy started pretty much straight away, both oral and intravenous. The injected stuff doesn't really phase Mitch. The oral stuff however..... For a fussy eater with a hyper-sensitive gag reflex anything that doesn't taste like something familiar is tough to swallow...literally. Apple juice, strawberry milk, chocolate syrup - nothing can make it taste nice, especially when you know it's in there. A definite challenge ahead.
Days Three - Five
Lost of rest, lots of fluids, more chemo, more information, more doctors, time to contemplate. Lisa and I haven't really had time alone to talk, let alone come to terms with things. Good thing or bad thing?....I'm not sure. We have both adopted a no nonsense, positive, 'let's just get him better' mindset. No real thoughts of any other outcomes.
Lots of playing on the iPad, watching television, sleeping, playing Lego and visits from his sisters.
Genuine comments from Mitch like - "I'm glad it's happened to me and not my friends" break our hearts and affirm our knowledge we have raised a mature and thoughtful boy.
Day Six
As soon as Mitch was told he may be going home today he was packing his bags and getting ready.
Lisa and I were taken to be inducted into the Cancer Day Centre (out-patients) procedures. Another eye-opener. A waiting room full of kids in various stages of treatment. As Mitch is at the top end of the ALL age he will be one of the older ones in the waiting room in the coming months.
A final visit from the doctors, good-bye's to nurses and it was homeward bound.
Nearing home we passed Mitch's school and he became quieter than normal. On getting home he put himself to bed and we found him crying quietly soon afterwards. Apart from the relief of being home, he was worried about school and his friends.
Days Seven - Twenty Seven
Taking meds is a daily grind. Lisa and I had said on a couple of occasions over the years that we hoped Mitch never gets sick because taking medicine of any kind has always been a big struggle.
It is definitely a big struggle that takes hours each time.
After his hair started to fall out and start to annoy him he agreed, after many suggestions from Em, to let her shave his head. Wow, seeing the little bald head really hits home that our boy has cancer.
12.12.2012 Em's birthday was somewhat over-shadowed, which didn't really upset her but Mitch did get quite upset that she didn't want a party.
Christmas Day
A little different to past Christmas's. Given Mitch was neutrophilic over this period we decided he should probably minimise his exposure to potential bugs so I took the girls to my Mum and Dads for lunch and Lisa took them to her Mum and dads for dinner.
He certainly didn't miss out on presents although didn't quite enjoy them as much as he had in the past.
Day Twenty Eight
Lumber Puncture and Bone Marrow Aspirate today. This will top up preventative chemo in the spinal fluid and provide a marrow sample for analysis and testing of blast levels at the end of the induction phase.
