Phase 1 – Induction

It has been 4 days since Hugo was diagnosed.  We spent the first night at our local hospital and were then transferred by ambulance to Great Ormond Street Hospital (GOSH).  The last 4 days have been a whirlwind, an intense and often surreal experience.

We have been told that the type of leukaemia Hugo has is Acute Lymphoblastic Leukaemia (ALL), common ALL to be precise.  This is a cancer of the lymphoid cells, which are a type of white blood cell.  You can read more about it here.  The treatment for ALL takes just over 3 years for boys and the prognosis for this type of leukaemia is high, at up to 90%.  I don’t allow myself to think about the 10%.

They have explained the procedures Hugo will undergo, the myriad of drugs he will need to take and have detailed the incredibly scary side effects he will potentially experience over the next 3 and a bit years.  I scribble in my notebook, wanting to take it all in, to know and understand everything that Hugo will face.

Hugo’s blood has been taken, he has been pumped full of fluids and given a blood transfusion.  His obs (temperature, heart rate and blood pressure) checked every 4 hours, day and night.

There have been a stream of hospital staff visiting.  Everyone of them kind and sympathetic.  All armed with information, with leaflets, with names I instantly forget. Every arrival making Hugo cry, fearful of what they are going to do to him.  Even visits from family and friends result in tears from Hugo.

We have cancelled our holiday, spoken to our employers, hastily arranged childcare for Henry.  We have told family and friends and felt the shock all over again through their reactions.

Hugo checking out the playroom

But there have been bright moments too.  Trips to the playroom and brief smiles for his preferred nurses.  Fun FaceTime chats with Henry as the two boys speak in their own language consisting mainly of blowing raspberries at each other.  An outpouring of love and support from our family and friends.  There has been an amazing, brave little boy who some how manages to stay strong.  Who has taken all that has been thrown at him and shown a courage beyond his years.  My heart breaks for him, but at the same time it is bursting with pride.

Today marks day one of treatment, week one of the first phase called induction which will last for 5 weeks.  This morning Richard and I took Hugo down to theatre for a bone marrow aspirate, where fluid from around the spine is collected for testing.  At the same time he had his first dose of chemotherapy, a drug called Methotrexate which is administered by lumber puncture into the fluid around his spine and brain.

He also started on Dexamethasone, which is a steroid administered orally.  We were invited and agreed to take part in the UKALL2011 trial.  This trial is looking to see if it’s possible, by making a few changes to current treatment, to reduce the side effects and the risk of relapse.

The standard treatment during the induction phase is 4 weeks of daily steroids. The trial arm is 2 weeks of daily steroids, but at a higher dose and it is this arm that we have been randomly selected for.  We have been warned that the side effects of steroids can be tough.  It may weaken his muscles, cause stomach irritation and sleep issues.  His appetite may increase drastically, causing him to gain weight.  There may be mood swings, toddler tantrums in the extreme.  There have been tales from the nurses of children demanding 15 packets of crisps in one day, of turing into demon children.  Quite frankly, I am nervous.  I have been fortunate, on the whole both my children are fairly easy going and relaxed.  Henry pretty much by passed the terrible twos and Hugo has shown all the signs of following suit.  Don’t get me wrong, they are far from little angels, but I have no clue how I will deal with a demon child, I have enough trouble dealing with the non-demon ones.  Do the normal rules apply to sick children?  Is it appropriate to put a child with leukaemia on the naughty step?  I suppose, like everything else we will figure it out as we go along, one day at a time.