Restlessness & Reading

Restless nights make for good opportunities to do some reading. Oliver has had af ew of these and last night was no exception. It doesn’t help having a nurse come in every hour. Like I said yesterday – what do they think this is? A hospital!

One of my ways to cope has been to try to get my hands on as much information about Oliver’s cancer as I can. Admittedly this has been a fairly small amount, but I am slowly accumulating things. If you think I’d be interested in something please feel free to share it.
I have read a couple of different articles from some US medical sites (National Cancer Institute, Boston Children’s Hospital, virtualcancercentre.com) about anaplastic large cell lymphoma (ALCL). This has been fairly general in nature, and often focussed more on adults. I have looked at the website for Lymphoma Australia. I have checked out a couple of websites that have given me access to drug information that I am yet to read. I have read a chapter out of a pediatric oncology textbook. I have been given a copy of a journal article about two cases of unusual manifestation of pediatric ALCL. This was interesting, and though much (all) of the genetic discussion was complete gobbledigook, I was able to understand enough to work out that Oliver would appear to be only 1 in 4 children in the world who has presented in such a way. It’s no wonder that it took them a while to work out what was actually wrong. I am also reading a book about childhood leukemia that was given to me by the hospital. Although specifically written for leukemia, much of it is about cancer in general, and because lymphoma is a very similar disease to leukemia, in that they are both blood cancers, even some of the leukemia specific stuff works for us aswell. If you are interested I can let you know the title. It’s probably the must useful thing I have read. And of course we have talked to nurses, doctors and parents. What have I learnt so far?

Cancer in children is different to cancer in adults.
Blood cancers, which are ‘liquid’, behave differently to cancers that are tumours.
A lot of information on cancer is written about adults.
Oliver has about a 70% chance of being given a clean bill of health in 5 years, the time period they wait for in order to be certain the cancer is gone.
Nothing that we, or anyone else, did caused Oliver’s cancer. It was a genetic mutation, possibly the result of his bronchiolitis just after easter.
Genetically speaking, any more of our children aren’t any more likely to develop this cancer than the child in the next room in the hospital. As they say, shit happens. Unfortunately, it happened to my little boy.
Chemotherapy has many side effects.
Cancer affects all of those connected to us. Some for better, some for worse. Help will come from unexpected places, while some who we expect it from will disappear form our lives.
This is going to be a long journey, even though Oliver’s treatment protocol is pretty tame compared to some of the one’s children are going through. You could say Oliver is fairly ‘lucky'.

Thankyou for reading my ramblings. Thankyou for your comments. Your support means more than you could imagine.