The answer is no. Julian is unable to donate a kidney to Gage.

Enough said.

All I could muster up last night were the above two lines. Here is the whole story.

We are devastated to learn that Julian is unable to donate a kidney to Gage. It turns out that his left kidney is out because it has three veins going into it (too difficult) and while the other kidney only has two veins, they are too large to match them up with Gage’s tiny little 43lb body producing veins. Just wouldn’t work. If Gage was older, bigger, yes. But now, no.

I am moving forward with donor matching but am not feeling very confident. I’m not sure if it is a true fear or just defensive heart protection. We have two non-relatives, with Gage’s blood type, that have mentioned they will be tested and we will be talking to them in the coming weeks to see if they are viable options.

As you might imagine we are crushed that Gage will have to be on dialysis longer than December. If I am approved, the earliest the transplant would happen we’re told is January. There are many doctor-parent discussions that have to occur in the next few days. Because I am not feeling lucky we are talking about peritoneal dialysis (at home, over night while he sleeps). That will require another surgery and a one week healing time before beginning. Add in some time for insurance approval and I’m sure that is a few weeks out. In addition, we will be putting Gage on the transplant list at least inactive (pending donor match from me) so he can accumulate points while we wait for results (probably 4-6 weeks). We will also be seriously discussing putting Gage on the active list now – that means that if he were high enough on the list (he gets extra points for being a kid and being on dialysis) and a perfect match came in from a cadaver that he would get it. We’re considering doing this now because if I am unable to donate then he will already have been on the list at least 4-6 weeks at the time we find out about me. If he ends up not getting one, then we can still test potential non-living, related donors. A third thing we are discussing is starting that growth hormone. Just in case he is on the list for a while he might benefit from the growth hormone, because he is really slipping off the growth charts.

As we have learned very well (okay, we get it) over the past 5 years when something shocking happens in the disease progression or treatment we need some time. More than one day and less than 5 days to digest everything emotionally. To mourn what should have been. To grieve for the impact of all this on the kids’ little souls. For how PKD shapes their lives. Time to work through our sadness for our family and the effect this horrible disease has on all of us. During those 5 days we know what will happen – life will keep moving on. Gage and Quinn still need to have Cub Scout camping trips and karate and pumpkins and costumes and fun and we’ll remember that we still have to live a life. 

Life always moves.