This is the time of year when much of what I say makes those in front of me (literally or figuratively) uncomfortable. When I see or hear their thought bubbles:
"We don't want to hear this."
"But Tom's been well for so long now, when is she going to get past this?"
"Don't scare me"
"Oh no, not again, I heard this last year!"
Not everyone feels this way of course. And actually, for those that do it's a perfectly natural thought process. We naturally flee those things which frighten us and which we feel helpless against. And it's also very easy to feel that we have done our part by sponsoring someone to aid their good cause.
But...
Today in the UK, ten families heard the words, "Your child has cancer". Ten pairs of parents went into shock, trying desperately to make sense of those words and their implications. Ten pairs of parents then tried to hold on to reality as doctors started talking about treatment protocols, experimental treatments, prognosis... Oh prognosis. As much as we know that numbers have little relevance to our child, we latch on to those numbers. When they are "good" - 80%, 90% survival rate, we pin all our hopes onto them. When they are not, we try to ignore them (unsuccessfully) and either prepare for the worst or think that anything higher than 0% is good.
Those ten pairs of parents then went home... some with their child, others leaving him or her in hospital, and then began one of the hardest things: breaking the news. To grandparents, to siblings...
For us, all of this happened incredibly fast. We knew something was wrong, but from "failure to thrive" to "leukaemia" is a massive step. From his admittance to hospital on Friday 31st October 20o3 to his confirmed diagnosis of JMML on the following Monday we lived that process with startling speed. Just to add a little to the drama, we were living in France at the time, so I had to process the doctors' news and translate it for Nick... time and time again it seemed.
We have been so lucky.
Tom's leukaemia is extraordinarily rare. The prognosis without bone marrow transplant is normally death. Simple, stark, true.
By some strange twist of nature, the fact that Tom has Noonan syndrome caused him to have JMML. It also seems to have enabled his body to halt the cancer in its tracks with only minor chemotherapy to help.
I am keenly aware that my, our cancer journey was remarkably and relatively painless. No hairloss, no sickness, no radiotherapy, only oral chemotherapy. Of course, Tom endured a bone marrow aspirate at 11 weeks old with no anaesthesia. The number of needle pokes is up to around 500 to date (he's 8 years old, so that's about 62 a year). General anaesthetics are at about 10, though I admit I've lost count. Mouthwashes were horrendous - four times a day with an anti-fungal I had to wipe his mouth with four separate gauzes. This for a child who had a gag reflex so sensitive that touching the tip of his tongue would cause him to retch. I could list many things which to a family untouched by childhood cancer would give nightmares. To many families who endure it, these are unremarkable, normal facts. Horrendous yes, but survival requires that we normalise our experiences.
After only one year of oral chemotherapy, Tom was considered well enough to come off treatment. He was never in a protocol as his leukaemia was so rare and he seemed to be one of a tiny number to stabilise. Then followed weeks, months and years of simply waiting. Hoping that he would truly stabilise, dreading that the leukaemia would rear up again, living from one blood test to the next. Wondering whether the bruises on his legs were leukaemia, or "simply" his platelet dysfunction. Trying to trust the doctor's optimism, but knowing that the numbers meant that nothing was certain.
Tom is now 8 years old. I can say that since he was 6, I no longer live in fear. Tom has given me a couple of scares in those two years, and for a while the dread does return but it is no longer a permanent state. I can even look at him and think of him as a survivor.
So while I know to the deepest parts of my being that we were absolutely lucky, that Tom's cancer journey was astoundingly simple, no I am not over it. Nor will I ever be. I am healed, but scars will always remain. And every time a child dies from cancer, and every time another child is diagnosed, those scars stretch and sometimes reopen.
Of those ten families today who were told their child has cancer, three of them will have to bury their little boy or girl.
If only there was more funding into childhood cancer, there would be better treatments, there would be more cures. That is the reality of medicine. When we fund research, results follow. And funding follows awareness.
There are things you can do that WILL make a difference. First, spread awareness. Make people uncomfortable, teach them what you now know.
Second, sign up to the bone marrow donor register - it is the one "organ" donation you can make with no risk to yourself that WILL save lives. While you are doing that, become a blood donor. Children on cancer treatment regularly require transfusions of various types of blood cell.
Third, use a site like POSTPALS to send some post to a child in treatment.
"We don't want to hear this."
"But Tom's been well for so long now, when is she going to get past this?"
"Don't scare me"
"Oh no, not again, I heard this last year!"
Not everyone feels this way of course. And actually, for those that do it's a perfectly natural thought process. We naturally flee those things which frighten us and which we feel helpless against. And it's also very easy to feel that we have done our part by sponsoring someone to aid their good cause.
But...
Today in the UK, ten families heard the words, "Your child has cancer". Ten pairs of parents went into shock, trying desperately to make sense of those words and their implications. Ten pairs of parents then tried to hold on to reality as doctors started talking about treatment protocols, experimental treatments, prognosis... Oh prognosis. As much as we know that numbers have little relevance to our child, we latch on to those numbers. When they are "good" - 80%, 90% survival rate, we pin all our hopes onto them. When they are not, we try to ignore them (unsuccessfully) and either prepare for the worst or think that anything higher than 0% is good.
Those ten pairs of parents then went home... some with their child, others leaving him or her in hospital, and then began one of the hardest things: breaking the news. To grandparents, to siblings...
For us, all of this happened incredibly fast. We knew something was wrong, but from "failure to thrive" to "leukaemia" is a massive step. From his admittance to hospital on Friday 31st October 20o3 to his confirmed diagnosis of JMML on the following Monday we lived that process with startling speed. Just to add a little to the drama, we were living in France at the time, so I had to process the doctors' news and translate it for Nick... time and time again it seemed.
We have been so lucky.
Tom's leukaemia is extraordinarily rare. The prognosis without bone marrow transplant is normally death. Simple, stark, true.
By some strange twist of nature, the fact that Tom has Noonan syndrome caused him to have JMML. It also seems to have enabled his body to halt the cancer in its tracks with only minor chemotherapy to help.
I am keenly aware that my, our cancer journey was remarkably and relatively painless. No hairloss, no sickness, no radiotherapy, only oral chemotherapy. Of course, Tom endured a bone marrow aspirate at 11 weeks old with no anaesthesia. The number of needle pokes is up to around 500 to date (he's 8 years old, so that's about 62 a year). General anaesthetics are at about 10, though I admit I've lost count. Mouthwashes were horrendous - four times a day with an anti-fungal I had to wipe his mouth with four separate gauzes. This for a child who had a gag reflex so sensitive that touching the tip of his tongue would cause him to retch. I could list many things which to a family untouched by childhood cancer would give nightmares. To many families who endure it, these are unremarkable, normal facts. Horrendous yes, but survival requires that we normalise our experiences.
After only one year of oral chemotherapy, Tom was considered well enough to come off treatment. He was never in a protocol as his leukaemia was so rare and he seemed to be one of a tiny number to stabilise. Then followed weeks, months and years of simply waiting. Hoping that he would truly stabilise, dreading that the leukaemia would rear up again, living from one blood test to the next. Wondering whether the bruises on his legs were leukaemia, or "simply" his platelet dysfunction. Trying to trust the doctor's optimism, but knowing that the numbers meant that nothing was certain.
Tom is now 8 years old. I can say that since he was 6, I no longer live in fear. Tom has given me a couple of scares in those two years, and for a while the dread does return but it is no longer a permanent state. I can even look at him and think of him as a survivor.
So while I know to the deepest parts of my being that we were absolutely lucky, that Tom's cancer journey was astoundingly simple, no I am not over it. Nor will I ever be. I am healed, but scars will always remain. And every time a child dies from cancer, and every time another child is diagnosed, those scars stretch and sometimes reopen.
Of those ten families today who were told their child has cancer, three of them will have to bury their little boy or girl.
If only there was more funding into childhood cancer, there would be better treatments, there would be more cures. That is the reality of medicine. When we fund research, results follow. And funding follows awareness.
There are things you can do that WILL make a difference. First, spread awareness. Make people uncomfortable, teach them what you now know.
Second, sign up to the bone marrow donor register - it is the one "organ" donation you can make with no risk to yourself that WILL save lives. While you are doing that, become a blood donor. Children on cancer treatment regularly require transfusions of various types of blood cell.
Third, use a site like POSTPALS to send some post to a child in treatment.
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