At long last, an update on Harry

But just before Henry's report, some recent pictures taken on Sunday, almost at bedtime:

"I can't go to bed yet, Dad, Uncle Gareth and I need to play!"

Hugs are the best!

Lydia and Groovy Girl = two groovy girls!

"I just learned to climb the stairs ...

... by myself!"

And now it's really bedtime ...

Henry's update

Last week we received a report from a Child Oncologist associated with the Morgan Stanley Children's Hospital in New York. The report confirmed that Harry's case is very rare and the prognoses are typically not very good. We're disappointed that the report focused more on past experience with this disease, and not on Harry's actual response to treatment thus far.

Rhabdoid tumours are very rare - they occur most commonly in kidneys yet make up only 1% of all kidney cancers, so the actual number of cases comparable to Harry's case is not documented, but is most likely exceedingly small and the report only refers to rhabdoid tumours generally.

The bottom line is we're pretty much in uncharted waters. The day after we got the report I found a scientific article in the Journal of Neuro-Oncology describing the case of a girl age 7 when diagnosed with a rhabdoid brain tumour. She is the first documented long-term survivor and what's quite amazing is the article specifically mentioned the role of complementary and alternative medicine (prayer, spiritual healing, vitamins, herbs and dietary changes).

I'm sure her parents were given a pretty bleak prognosis too. The report that we got last Thursday confirmed what we knew already - Harry's is a very rare and difficult cancer - what it doesn't capture is the enormous strides he's taken thus far, his joy of being, and his fierce will to live.

Last week Thursday we also heard back from SickKids hospital in Toronto - they will consider him for surgery if the next CT scan shows that the last remaining lesion on his lungs is gone. They have to be sure that the metastatic disease is under control before they will consider surgery. Now more than ever we ask for your prayers and meditations that Harry continues to respond to treatment, that the primary tumour on his liver continues to dissolve, and any metastatic lesions disappear.

Incidentally the girl who survived the brain tumour was taking the following supplements (many of which I'd never heard of):

essiac tea, pau d'arco, shark cartilage, Reishi mushroom, vitamins A, C, E, and B5, lecithin, manganese, potassium citrate, zinc, alfalfa herb, asparagus, black walnut hulls, dandelion root,dong quai root, kelp plant, lemon bioflavonoids, licorice root, marshmallow root, parsley, parthenium root, schizandra fruit, ginseng, thyme, uva ursi leaves, dimethylaminoethanol, ginkgo biloba, grape seed extract, L-glutamine, Melissa officinalis, slippery elm, flax seed oil, chamomile, fennel, feverfew, hops, passion flower, cleavers, red clover, stillingia, and prickly ash.

Harry's still nursing and between his diet and Cynthia's diet he's getting some of these supplements - I'm going to be discussing the longer list with our herbalist and naturopath this week. Any comments on these supplements are most welcome.

With much love to you all,

Henry, Cynthia, Lydia and Harry.

NB: Please note that we'll be posting the article that Henry mentions here in a few days time, so do check back soon for that.