What is maintenance all about?

We have now reached the end of our first 12 week cycle of the maintenance phase.  We are slowly adjusting to another new normal, one that will last a long time.

So what is maintenance?  As I understand it, during the first 4 phases of treatment Hugo was given intensive chemotherapy to remove all the leukaemia in his body.  Unfortunately in removing all the bad stuff, a lot of the good stuff got wiped out too.  Hugo’s bone marrow has no recollection of how to create white blood cells, which is probably a good thing given what a bad job it was doing.  If Hugo’s treatment stopped now the leukaemia would return, which is why it obviously must continue.

The maintenance phase is to show his bone marrow how to make white blood cells properly.  His neutrophils are kept within a certain, ideal range by use of chemotherapy and steroids and gradually the bone marrow will learn what it is supposed to be doing.  He has weekly blood tests to check his neutrophil count and his medication dosage will be adjusted up or down to ensure that it is kept within that ideal range.

The chemotherapy given in this phase is also to reduce the risk of the leukaemia returning to another part of Hugo’s body, such as the brain or testicles.  The extra body part is the reason that this phase lasts a year longer for boys than it does for girls.

That’s the theory.  We have to trust in the medication, trust in the ability of Hugo’s body to learn and we have to hope.  Hope that the bone marrow gets it, that it continues to get it, that everything goes as it should.

In practical terms the maintenance phase means chemotherapy, steroids, monthly trips to the hospital and weekly blood tests as a bare minimum.  Unlike the other phases, every month should be the same, although they are grouped into 12 week cycles.  That’s the plan anyway, but we are told to prepare for bumps in the road.  His monthly drug regime looks like this:

Vincristine (chemotherapy) administered at hospital via wiggly to get the month started.
Lactose to counter the ‘blocking up’ effects of the vincristine.
5 days of steroids given orally at home, twice a day, immediately following the vincristine.
Septrin (a drug to prevent problems arising with his lungs) given twice a day on a Monday and Tuesday.
Methotrexate (chemotherapy) given on a Friday.
Mercaptopurine (chemotherapy) given daily.
We also have Ranitidine, an anti sickness medicine, on standby, just in case.

Monday morning breakfast – weetabix with a side of medicine

Other than the vincristine, all the drugs are given orally at home by us and a nurse comes to our house each week to take his bloods.  We start each 12 weeks cycle with a visit to GOSH, but the next 2 monthly check ups are at our local hospital.

The rules still apply regarding temperatures.  If Hugo shows any sign or infection, specifically a temperature then it’s a trip to the hospital.  If we are lucky it’s oral antibiotics, if we are unlucky it will be IV antibiotics and a minimum 48 hour hospital stay.

Our first 3 months all looked quite similar to the scheduled plan above, with the addition of 3 courses of oral antibiotics (2 for a temperature and one for a red looking throat at his monthly check up) and 3 unscheduled trips to the hospital (2 for temperature and one for a limp).

We have been greatly looking forward to reaching this phase and the promise that our lives will start to look and feel a little more normal.  So far this seems to be the case.  Hugo has returned to nursery 2 days a week and I have gone back to work, albeit for fewer days than before.  We have managed a little mini break, spending a wonderful 4 days in the beautiful Cotswolds countryside.

There have been trips out and about to the zoo and farms, a fabulous third birthday, a big boy bed, Easter egg hunts and normal, lots of normal.  The creating of lovely family memories.  The drugs, the weekly blood tests, the hospital visits are all becoming just our way of life now, we refuse to let them be a hindrance.

However, it is hard to shift the feelings of apprehension completely.  Life should be easier, it seems to be easier, but what if that doesn’t last?  What if these early weeks are unusual in their ease?  Hugo is still at risk of infections, which could see him seriously ill, or worse.  The fact that he has been fortunate so far means little.  There’s no point scoring here, no reward for good behaviour.  We have been fortunate so far, but what if our luck is about to run out?  This could turn out to be our worst phase and it lasts for another 2 years and 5 months.

I know we will deal with whatever is thrown at us, be it an easier more normal life, or a tougher path, I just want it to be better for Hugo, for all of us.  I’m angry at cancer, so angry.  But at the moment I can push that anger to one side and deal with each day as it comes.  I can allow my hopes and optimism to overpower it.  I am scared that at some point, if this journey becomes harder, that my anger will take over.

It’s so difficult not to feel overwhelmed by the length of unknown that is stretching out before us, but for now I will just try hard to enjoy our good fortune, without worrying about the many ‘what ifs’.  To remember our one day at a time mantra and be thankful for how far we have already come.  To enjoy the more predictable treatment plan, to get out there and enjoy every minute of good health.  Hugo is proving what a tough little man he is and if he can be strong, then so can the rest of us!

My superheroes ready to take on the world!