OK, so I did it. I googled delayed intensification. As I said before I do not often google treatment related stuff, other than the medication related info I am looking for. Once you start googling there is no way back and there is a lot of stuff on the web, some of which should not be seen by eyes of a parent with a leukemia child. Besides all the scholar articles there are masses and masses of blogs. And forums.
The scholar articles always discuss treatment outcome and are a macabre and bizarre thing to read. Here children become numbers and fatalities become undesired treatment outcomes. I can tell you it is not comforting to read about ‘improved long term outcomes after high dose chemotherapy’ because I know what high dose chemotherapy means. These article absolutely and utterly lack mention of side effects that affect quality of life for the sufferer and their families. Nevertheless I sometimes read selected parts because I feel it gives me an inside why certain treatment options are made for Vega and what it must be like to sit in the consultants office when they are making these life altering decisions for my child. But most of the time they just make me sad and give me a HUGE lump in my throat, and I start a chant in my head “this will not be Vega, this will not be Vega”.
The parent blogs are different. They are exactly the opposite of the scholar articles. Here you will seldom find a lot of actual medical information but always a lot of feeling. Children suffering, dying or sometimes doing really well, being strong and little fighters.
It turns out both from the scholar articles and the parent blogs, delayed intensification is a major pain. This really is the toughest block of them all and it seems to hit the kiddos hard. They are all worn down from nearly six months of chemotherapy and DI is the last hurdle to break before long-term maintenance. I knew this already, because I see Vega every day and I can see how difficult this is for her. I guess I was googling because I needed some comfort, that this is ‘normal’ given the circumstances and that even if it seems so low at the moment it will end and we will get through it. I found that pretty much every parent blog describes this feeling of not having any resources left at this point. Everyone seems run down, out of steam, exhausted and so very upset again, similar to the time just after diagnosis. Many parents comment on how well their children have tolerated the whole regime until now but that suddenly their little fighters are doing nothing but being sick, in pain and in bed. And it is a shock. Children should not look like this and definitely should not have to suffer like this. I feel the same, and I too have flash backs to our diagnosis day and first week. The situation is not the same, but this feeling deep inside that nothing will ever be normal, even ok, again is what feels all to familiar. But it got better after that first week and I am sure it will again after this block is over. But it does not make any of this pain and suffering easier now.
Reading other parents’ blogs and seeing my site stats, I suddenly felt some responsibility. My site stats show me how many people are looking at my blog, from which country they are linking in and even which site they are being referred from. Most of my views are from facebook, you my trusty friends who support me immensely with reading what I write and commenting, picking me up.
But often views are being referred from a search engine, like google and I can see what was googled and how people found my blog. Usually it is something like “how did your child tolerate escalating capizzi” or “new to ukall2003” or “child not walking with steroids”. I feel so sad and angry when I see these because I know there is another family out there battling the same shitty cancer and looking for the same answers as me, looking for that one blog, or scholar article that comforts the worries.
To you, parent of another child with leukemia, I want to say be strong. Be optimistic and hopeful and stay away from the scholar articles. I know it is overwhelming and I know that I am still often feel overwhelmed six months in but it gets better. My blog is a summary of many hours and days and I often boil it down to the worst or best bits. I have said this before but we have pretty normal moments too. Like now Lyra and Vega are playing in their bedroom like any siblings would, laughing and shouting at each other. And this afternoon we are going out to see friends. We can endure this ordeal because of these moments and we are strong for when the rough gets tough. I do hope that the underlying feeling you get from reading my blog is hope, rather than upset and despair. I know that I have the occasional ‘heavy’ blog entry, I feel great relief from putting my fears and worries out there, which is purely for my personal emotional wellbeing and is not intended to make you feel frightened of escalating capizzi or DI or Doxorubicin or… anything. This blog describes Vega’s and our journey through childhood cancer treatment and although there might be similarities there might also be big differences. So please have hope. I do.
I am grateful for all your readership, friends and strangers alike and for all your comments. If you are a stranger and a regular reader send me a comment- I’d love to hear from you even though I am sad we shall meet this way.
If you are a friend- you are the best!
“The pain passes, but the beauty remains.” -Pierre Auguste Renoir