Research and Results

The official report pretty much reiterates the "mom report". Steven shows slight growth in the hemangioblastoma that resides in the medulla area of the brain stem. Because of the benign nature of the tumor and the persistent nature of the disease, that tumor will be left alone until it forms a cyst or grows to the point of blocking CNS fluid.

That is medical-talk for "we had the best time today in exam room B." We were able to catch up with the amazing Dr. Liu, meet Dr. V's new fellow, and let a resident or two in on our secret of successful living with VHl. And I believe that Dr V even popped into the room for a moment or two...If we'd thought of bringing chips and salsa, we could have had a party in there!

I was trying very hard not to count tumors this time...but it seems that Steven now has 6 confirmed hemangioblastomas in his brain and three in the spine. Again, it's very hard to predict which hemangioblastomas will cause troubles and which will simply co-exist with Steven for a very long time.

My "mom prognosis" is that two of these tumors will definitely cause problems in the next few years...not that I'm an expert or anything in the field of "curing Steven."

That said, it's been a long and tiring two days!

Today started with a friendly donation of blood at St. Joseph's Hospital, the purpose being VHL research done through the NDRI and supported by the VHLFA. While I'm not well versed in the specifics of the study, I do know that one of the purposes of this study is to look for a correlation between the specific genotypes and the resulting phenotype. The study is hoping to be able to associate the specific gene mutation (there are many, many, many variations of the genetic mutation on the short arm of the third chromosome that results in the VHL disease) with the type of tumors that a person develops in their lifetime.

We need the answers that studies like this provide. I am tormented, at various times in the course of my days, as to why my son has a large number of VHL related tumors in his brain and spine at a fairly young age, yet other VHL patients age well into their middle years with only one or two hemangioblastomas. And I need to understand why Steven has such wonderful retinas when other teens with VHL are losing their sight. And I wonder, seriously wonder, if he will also face a young diagnosis of renal cell carcinoma or grow old with only a few spots on his kidneys. By simply donating blood, and a little paper work, we are hoping that answers will be found.

Without a doubt, we are also very passionate about supporting medical research to help these VHL warriors with effective medications, better screenings, and less invasive surgery techniques. Without a doubt, we will do our part to support the search for a cure.

Without a doubt.

Please excuse my blatant enthusiasm for medical research. While I don't tend toward the dramatic, I have to admit, in all honesty, that my sweet boy would have had tragic results in the summer of '07 if it weren't for the medical knowledge recently gained through research. My strong desire to support this worthy cause rests always on that thought. Without a doubt, the gains made in genetic testing, imaging techniques and quality of surgery saved Steven's life.

It has been a very long and tiring two days. The new imagining center definitely adds a time glitch to the process, and the wait for the wonderful Dr V is always predictably long. Throw in an extra stop for a new research project, and, oh my, the past two days have been long! Long and tiring days, however, are tempered by good results. Stable is a blessing. Stable give us time to support the research that will save our sweet boy!