We are so grateful to Siobhan aka the_tightrope_walker for this week's guest blog. Siobhan's youngest son, Dylan, was diagnosed with b-cell lymphoblastic lymphoma just before Christmas 2016. In Siobhan's words "life as we once knew it stopped & has become a slow, anxiety ridden, heart wrenching journey." Siobhan writes about Dylan's cancer experience in The Little Big C blog and we highly recommend that you check out her powerful and emotive posts. For our guest blog we have chosen Siobhan's post about play dates - for those of us that have children, a normal part of everyday childhood...
One full year in Reception class & then the first term of Year One. That was the sum total of Dylan’s school life before he was diagnosed with cancer. He had turned six just six weeks before life as we once knew it came to an horrifically abrupt stop. The kind of stop where the brakes were slammed on so hard that our faces smashed into the dashboard of existence & left us crushed in eternal shock.
Dylan was the type of toddler who refused to leave the park when it was time to go home, he would completely ignore my idle threats to leave without him & would purposefully walk in the opposite direction to me. He was fearless, not blindly so, but he was determined, headstrong & stunningly self-assured. By the age of six not much had changed, Dylan was a happy, confident & funny little individual. He was a very independently sociable boy who loved going to school; he thrived on social interaction & had got to the age where after school play dates were becoming a thing. I had no qualms whatsoever about occasionally allowing him to visit his friend’s houses for tea, more often than not without me as he always wanted me to pick him up as late as possible. Likewise, he loved having friends over to our house.
There had been little in his then six years on this earth that had phased Dylan but then cancer came along & for a very long while took all the joy out of his tiny existence & subsequently mine.
Chemotherapy makes him feel horrendous & for eight months Dylan’s intensive treatment protocols were, amongst many other things, an unforgiving onslaught of sickness, diarrhoea, immobility, severe Jekyll & Hyde mood swings & no immune system.
We were either housebound or in hospital for the majority of that time. There were times when he could not move without crying, there were times where he had no control of his bowels, there were times where he would wake up covered in sick in the middle of the night. Quite simply there were times where he looked like he would never improve.
Pretty much all of the time he was starved of regular social interaction. No immune system means that if he catches so much as a cold he will be hospitalised for days. In fact, many children with cancer lose their chance at life because of secondary illnesses which they catch whilst they have no immunity to what we might consider the smallest of ailments; it sounds far fetched to think that a common cold could have the potential to end a child’s life but the knock on effects of a straightforward cold can in some situations be more frightening than the initial cancer diagnosis itself; although of course it is all because of bloody cancer that they are in this godawful predicament in the first place.
So, for a very long time Dylan hardly had any play dates. We were reluctant to have people other than family visit us & even then that was not always possible; we had to know if people had been unwell up to two weeks prior to potentially popping in & if they fell ill a couple of days after a visit then we were on high alert.
Not long after Dylan finally started back at school in Year Two a few children in Reception class had contracted chicken pox & even though Dylan had not been in direct contact with those particular children, he was in the same class as their older siblings & so had to take a two week course of preventative antibiotics & stay off school for the duration. This has happened a few times with various illnesses & we are always advised by the hospital to keep Dylan away as a precautionary measure particularly if his blood count is below a certain level.
Once his maintenance regime started I had expected things to get a little easier. Maintenance started just over a year ago & it is only in the last three months or so that I have felt that things might be settling down; there are still some issues that need to be investigated health wise but on the whole things have felt slightly more manageable. I always chuckle snidely to myself when I say that sentence; it actually makes no sense to me whatsoever but that is because I am a mother & my child’s illness has made me doubt my own intuition. His cancer has eaten into the very core of my being & now forces me to examine & then re-examine my self, my life & my surroundings on an almost continuous basis. There is so much noise in my head; nothing is ever still. It is an echoey, painful din which relentlessly torments me & makes me question what I am doing & how.
As I write this, we are firmly ensconced in the middle of the school summer holidays & therefore have time to “relax” a bit in between treatments. We have made a few arrangements to meet up with friends for picnics & outings. These loose plans have made me think about play dates & I am not sure where I am with the whole concept.
Last term a few parents asked if Dylan would like to come for tea after school & I always said no. In truth it was because he had just had or was about to have treatment, was on steroids or was not feeling great. Also, we cannot forget that he still has not managed a full week at school & is absolutely shattered at the end of every day. However, there is a part of me that is petrified to do the whole after school play date. All the “what ifs” churn through my mind & I freeze at the thought of something going wrong & so I conclude that it might not be “the right time”.
The parents have always said that I am welcome to come with him but then my head fills with fear about being able to talk for a prolonged period of time; there are still days when I do not want to talk to my closest friends for more than five minutes.
Every single parent at school is lovely but I do not think I have been ready to engage in any of the above; our situation is still very much evolving. I have created my “safe places” & I am reluctant to leave them but I know I need to start taking those steps not just for Dylan but also for myself. The thing is I am part terror & part apathy; not the best combination for making strides forwards.
I know I will not feel like this forever but there are still many days where I cannot string a sentence together with any coherence; there are still many days where I pretend that I can just because I know that some people cannot fully understand. There are still many days where I wish everyone would just leave me alone but I never know when these days are coming & it would be ridiculously unfair of me to expect anyone else to know that whilst I am smiling on the outside there is often something altogether different going on on the inside.
At some point I will bite the play date bullet, probably when the idea comes from Dylan himself. He still tires so quickly & the window of opportunity is pretty narrow; there are probably only two full weeks in every month when he is unaffected by chemotherapy & or steroids. So I am going to have to plan – something that I can barely bring myself to do because our plans are not really plans as such, they are more like continuously cancellable dates & if I am honest, this is mostly due to cancer but a small part of it is down to me.
Discounting immediate family, I can count on one hand (& still have fingers to spare) who I would be sort of happy to leave Dylan with for a couple of hours; believe it or not, that is progress.
There is still a lot more progress to be made.
I am not ok but I tell myself every day that I am. I am, to all intents & purposes a mess; a cloudy melange of inner turmoil & constant headaches. Nobody believes me when I tell them that but there it is; although I do not say that very often…it is probably a bit too much for some. I just find ways of getting up every morning & getting on with it even though most days I would rather not have to face my son’s cancer & its accompanying crap all over again.
Deep breaths though; just because I feel like I hardly recognise myself is no reason for me to believe that Dylan is anything other than the boy I described at the beginning of this post.
At some point he will have that play date; probably not until all the planets have aligned or alternatively I have found a cool, dark, padded room to live in.
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