We’re headed when the kids are out of school to the NIH (National Institute of Health) for a study on cystic diseases. For 5 days we’ll be staying at the Children’s Inn while the kids have tests each day. It’s 5 days because they spread tests out so there isn’t pressure on the kids with round the clock poking and prodding.
I know. We’re fun parents, aren’t we?
The study has been going on for about 4 years (I think) and until now we’ve been reluctant in signing the kids up. The doctor in charge of the study has been talking to me for a long time about the study hoping we would consider getting the kids enrolled — you know, the sibling thing was a huge reason they were attracted to us and then there’s the mutant thing we have going. We didn’t do it early on because the study was limited to kids with ARPKD/CHF. It’s no secret that the kids don’t have classic ARPKD. They have the eye disorder (OMA) and they have symptoms from another cystic disease that is tied to OMA. But they have very specific symptoms that are linked with ARPKD. Because of this I had decided that our participation wouldn’t necessarily help the larger ARPKD community.
Last June at the PKD Foundation’s National Convention the doctor approached me on day one to let me know that they had expanded the study to include cystic diseases in children. After the Convention I spoke at length with her and changed my mind. I enrolled them in the Fall for a trip soon. I suspect the kids won’t appreciate the blood draws (2) nor the sedation for the MRIs (I don’t think Gage will need it, but I have authorized in case he does) but I think it will be a low pressure week as medical testing goes. And I’m looking forward to the information they will share with us at the end of the week. We are scheduled to go annually until…well, I’m not sure when, but we will have annual visits.
Even though I struggle with putting the kids through non-necessary testing, I think it’s important for us/them to have more information as time goes on as well as try to help the medical community know all they can, so it is maybe a little easier for a family some time in the future. It’s why we donated Gage’s crappy kidney. It’s why we’ve given blood to research studies. It’s important. And I want Gage and Quinn to grow up thinking it’s important too.
It’s so very hard to know if you are doing the right thing as a parent where something like this is concerned. They are non-necessary tests for their treatment but they are necessary as a parent to be armed with more information. I hope that they understand one day that I understand the position I am putting them in and I do it with careful consideration about the many doctors, children and families that can be served from the knowledge they garner from our little mutant family.
I think that your kids will be able to see the importance. And perhaps it’s because I just started reading around… October maybe? Something like that… but, how was Gage’s kidney donateable?
From everything I hear, I think they will think they are on vacation. I think I emailed you the forward about the things to do (tell me if I didn’t). I hope so, because we go in June. Talk about fun family vacations-I know. Plus, you are so right about needing more info. The thing I like the best is you get so much info at the end-they can even tell you about where they are at in the progression (maybe this will help ease your mind about Quinny?)
And the research for the medical community-well, I tell myself that they have leaps and bounds as far as treatment….so maybe we don’t have to go through this with our grandchildren, no?
Plus-they get to do fun stuff. Wish we were going at the same time. Next year for sure-I will plan on it.
Thinking of you all the time
Oh yes-safe travels tomorrow
Jen and the boys
J- I think this is AWESOME! For you, the kids, other families, and most importantly, for the ongoing research value for everyone current AND in the future. What the “experts” know now is peanuts to what they can know in two years and exponentially beyond that, and every time they get a gift like the one you and the kids are giving them, they can manifest it a thousand-fold to others — and back to the kids.
Which Institute is it – I’d love to look it up! The NIH is actually many Institutes.
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