Thursday, June 18, 2009

Busy June!

June is a busy month even without the prospect of New York and Hank's surgery looming ahead! End of the school year, graduations, Father's Day...and for us we add in the fundraisers, Jeff's birthday and Hank's birthday! Today is Jeff's birthday...Happy Birthday Jeff! We have decided to drop everything and take the kids up to Lake Tahoe for a quick get-away. Lucky for us, Jeff's Dad has a home near South Lake Tahoe, so this is a "free" vacation! (only way we would be going at this point!)

I am feeling WAY overloaded with everything that needs to get done...departure is now 10 days and counting! But the prospect of spending some quiet time away from the day to day grind, with our little ones...just our too enticing! Lucy and Charlie haven't been anywhere since February and this may be our only chance to get up to the Lake, depending on how Hank is after surgery. I am dreading leaving those two behind when we go to NY, so I will take every chance I get to hang out with them!
Poor Hank...He LOVES to swim! And the weather has not been cooperating! Of course, today is the first good day for the pool and we are leaving! I am keeping my fingers crossed that we can take him swimming every day next week. I was thinking that he could swim when we get back from New York, knowing he would need to keep his head out of the water...but I had forgotten about the incision that will be made under his arm for the tissue harvesting. There is no way we are going to let him get in a pool after I don't think he'll have a lot of mobility, and two...infection! I don't want to open him up to germs. What a bummer for him! (He has no idea, and I'm not tellin'!)

I took Hank down to the lab for some blood work yesterday. We stopped at Target first where he wanted to get a new Lego set. opportunity for bribery...! So I proceeded to drop the bomb on him about the blood tests, and told him if he promised not to complain about it, I would buy a small lego set. "Will it hurt?" Hank asked. "Yes. It will sting for sure," I answered. Hank started to amp up the tears... "Legos!" was all I needed to say and he blinked back the tears and agreed to our deal.

Taking all three kids to the lab to get blood drawn is not an easy task and really it's just downright stupid! But I had no choice and away we went. They sat Hank in the chair and tightened the elastic band around his bicep. Hank winced. "Lego's, " I whispered. He sat quietly. Lucy and Charlie stood there with big eyes, watching everything. "Is it going to hurt?" Hank asked again... the lab technician, who was not very child-friendly said "You will just feel a little pinch for a second." That didn't turn out to be quite accurate... She inserted the needle and Hank's body jumped. "Ow, ow, ow...ow ow ow...that hurts!" was Hank's reaction. "It's OK, she's almost done, hang're doing fine," I reassured him as my stomach churned and she started to collect the 2nd vial of blood. Tears filled Hank's eyes. "Lego's," I said. Hank shut his eyes and squeezed the tears out, but he didn't make a sound, as she filled the THIRD vial... I was sick to see so much blood coming from such a little person. Lucy and Charlie stood on tiptoes to get a good look and oo'd and ah'd over the whole procedure. Finally it was over. Hank sported a gauze strip with medical tape over it, with pride. Cookies for everyone!

But now I am DREADING the pre-op testing at the hospital in NY. I guess I better stock up on some small Lego sets!

Exciting news! There was a post on "The Romberg Connection" web site the other day. The Discovery Channel's show, "Mystery Diagnosis", wants to do a show about Parry Romberg Syndrome!! Hurray! Some national exposure for this disease! This is what we need and what we have been working for!! With exposure comes familiarity...and with that comes research! Research for a cure! I feel like those with the disease and just a handful of doctors are the only ones who care or know enough to pursue the search for a cure. But maybe, just maybe with this mainstream exposure...PRS will become a familiar MS. I think MS was a hidden illness for a long time, but now people know about it and there is research going on!

Incidentally, a friend pointed out to me the other day...If you look at the world's population and you consider how many people have been diagnosed with PRS, the odds are much greater than one in 750,000 people. So, I went on the global population clock web site and figured it out. Let's say 1,000 people have PRS in the world. That's a one in 6 million chance! Yikes! We really need to be buying lottery tickets!!

I am in the process of finishing up the questionnaire for the show. I don't know if they will choose Hank. We haven't dealt with this illness nearly as long as others have. For us, it's just been a few years. But I am hoping they will choose someone who is going the micro-vascular surgery route with Dr. Siebert and not the chemotherapy route. And even though it's only been 3 years for us, I feel like we have put a lifetime of work into figuring out this disease and searching for the best treatment options. And I hope that others have the kind of support that we, friends, our church, and our whole community. Everyone has embraced Hank and have done so much for him and us!

For me, this is a battle I can't give up. Even after surgery and Hank's progression has stopped and he doesn't have any more symptoms...(because that will be the outcome of all this!)... I won't be able to put this to rest. More people need to pick up this fight. My hope is that we will become a non-profit and be able to help those who find themselves in our shoes and don't know where to turn. I want to be able to point them in the right direction and help them get to where they need to be. Pay it forward...


  1. I hope that you guys have an amazing trip. You all deserve it. - Sending Love.

  2. Tell Hank he is a trooper!! He did wonderfully on his blood draw - gosh. Kealy had to have blood drawn for other medications she took, way before the LS showed up and it was not a pretty sight when she went (one time it took her dad, a nurse, myself and another tech to hold her down while they drew blood)...NOT FUN. NOW SHE SITS LIKE A REAL TROOPER & ONLY HOLDS MY HAND! We have come a long way..... Let Hank know he DID 'GREAT'!