Sunday, April 26, 2009

Hope and heartbreak

It's already the end of April! The good weather is here and in Illinois that means lifting the depressing veil that has been hanging over us for months. Austin has been fighting a cold all winter and had 5 ear infections. He had tubes placed in his ears on April 3. His ears have been fine since but the cold remains. We took him to the allergist and she recommended a battery of tests to find out if he is allergic to something that is causing the symptoms. We are awaiting the results. Otherwise Austin has been doing great with no serious concerns. We even heard some promising news about a possible potential weapon in the fight against NCM. It happens that vitiligo, a skin disorder that takes away pigment in the skin, is actually more common among people with nevi (like Austin's birthmarks) than in the general population. It seems to be an immune response in the body *against* the nevi- a "halo" forms around the nevi and they slowly begin to disappear. A child with nevi and vitiligo who also has NCM recently had an MRI of her brain done, and the NCM seems to be disappearing. This could mean that if- somehow- vitiligo could be induced in people with NCM, maybe, possibly it could lead to a cure. Sounds exciting. There are actually some drugs with the documented side effect of vitiligo. Could there be a way to induce vitiligo without causing other damage? Maybe....

Unfortunately as this exciting news comes, we also receive sad news. A baby the same age as Austin died last month of NCM related complications. A boy of 9 years who developed hydrocephalus as a result of his NCM within the last year died of leptomeningeal melanoma. An 8 year old boy named Riley, a first grader like Aidan, just found out that he may have leptomeningeal melanoma as well. You may remember this is what they call it when the pigment cells in the brain turn into cancer. The reason you may remember it is that the doctors thought this is what Austin had all those months ago. At this time there is no reliable treatment (although there is an experimental one) and certainly no cure for this type of cancer. It is extremely rare and the survival rate is extremely poor. It seems to be the main reason that people with NCM who develop hydrocephalus (like Austin did) are told the chance of surviving 2 years is about 30%. We are closing in on the 2 year mark since Austin's diagnosis and I will admit that I am terrified. All of this bad news is finally beginning to sink in (and imagine what it is like for those families). For all this time we have done a pretty good job of staying in the present and are praying for the strength to continue on that path.

All of this news has made me consider what to do next. I feel an urgent need to do something more and we are considering some major fundraising ventures for the short and long term future. We greatly appreciate any input and ideas, and of course, your support and prayers mean everything to us. Of course the main thing we plan to do is enjoy Austin, Liam and Aidan and appreciate each day as it comes!