One evening just over a week & a half ago I receive a text message just as I am about to walk into my local supermarket. As I read the message my legs go weak; then as what I read is confirmed to me in a subsequent message my legs give way completely & I collapse. I struggle up, I hold my breath & I make it back to my car where I sob uncontrollably for what feels like eternity…I cannot stop.
None of these blogs are easy to write but this one is up there with the hardest.
There is a little girl in Dylan’s class. She is an absolute doll. She had a brain tumour & after proton beam therapy had gone three years with no evidence of disease. She has scans every six months.
The message I receive is from her mother; her cancer has come back.
Her story is not mine to tell; this is about the immediate & sudden impact that this news has had on me.
Only now can I just about begin to imagine how that little girl’s mother felt when she was told that Dylan had cancer.
In the blink of an eye I am back at the beginning.
I am back with the dental consultants.
I am back in the hospital.
I am back in room nine.
I am back lying on the hospital bed with my son.
I am back with the most hollow, nauseating, wretched pain in my stomach.
I am back to the sensation of my head hurting so much that I feel as though I have lost my hearing.
I am right back there, back at the beginning.
However, I know it is not me who is back there, it is this mother, her daughter & the rest of her family; for the second time. If my pain has intensified this much then I can but imagine hers.
Eventually I get out of the car, I wander around the supermarket in a bleary eyed daze. A member of staff asks me if I am ok, I tell him that I am not & I find myself telling him why. The poor man was of course completely lost for words.
Since Dylan’s diagnosis this little girl’s mother has been an immeasurable pillar of support. She completely understands my thoughts, my pain & my experience. So many people have shown incredible empathy but when you have walked in someone else’s shoes the depth of understanding is undeniable.
It is difficult meeting parents of children who have relapsed at anytime but these two children have been classmates since reception.
One child with cancer in a class is rare (actually, maybe it’s not…I have lost count of how many children I see on our ward alone…they are all in someone’s class) but two children in the same class, that is definitely rare.
I am completely overwhelmed with pain for this family who have spent the last couple of years starting to find the confidence to dare to live their “normal”.
I feel for the teachers, the other children in the class & of course the parents of those other children.
They are a beautifully unique group of six & seven year olds & the parents & teachers are the same.
The love, support & understanding that we have received as a family from these people is endless; now they have to do it all over again & I know they are all utterly heartbroken.
The children ask questions when Dylan is not in school. They do not understand why his medicine makes him poorly, they think it is meant to make him better…the innocence in their irony is just tragic.
As a parent you do not factor in having to tell your child about life threatening illnesses at such a young age, neither do you factor in having to tell your child that it is they who have a life threatening illness.
Each one of those children is made of strong stuff as is each parent. His teachers have been so perfectly tuned in to Dylan’s treatment, his needs & his progress. These people are all a tower of strength & now they will continue to be so for not just one family but two.
Of course I am acutely aware that Dylan has cancer but I am not in this double despair. Relapse is one of the biggest things that oncology parents fear; it sits quietly in the back of our minds all of the time.
Within my own turmoil upon receiving this recent news I have had a sudden feeling of no longer knowing how I should behave or how I should feel. I feel numb & I feel guilty. I am so confused by trying to explain this.
I know it may seem like a ridiculous notion but I think my guilt stems from suddenly feeling unqualified to be able to access what I want to give by means of support. I have not had to go through this twice. The turbulence that this recent news has caused me is disquieting.
When Dylan first went back to school I struggled to talk to people & to look anyone in the eye, mainly because I could not actually speak without crying & I was petrified of being asked how Dylan was doing. I felt so isolated because there are so few people who actually understand this wretchedness. It is a very strange thing to have a conversation with someone when for the most part all you are doing is thinking about cancer. It started to feel a bit more manageable but my thought process & emotions have regressed somewhat.
I know what I need to do. I know that I will of course continue to focus on Dylan & his progress. It is just a little harder & hurts all the more as this is so close to home. Even though I know the situations are different, I also know exactly how I will feel each time that little girl has to have any sort of procedure or treatment.
I know that I will be reliving Dylan’s journey & I know that I will be suspended in desolate isolation.
This beautiful little girl looks a picture of health.
Dylan currently looks a picture of health.
That’s the thing about cancer.
You just can’t see it.