At lunch the following conversation transpired:

“It feels weird for them to be gone, somewhere that isn’t with family.”

“I know. Do you miss them?”

“Kinda. In theory I miss them. I don’t miss doing for them.”

“I do miss them. I do. Really.”

“I wonder about Quinn though, like how is she doing without us?”

“She’s fine. If she was really doing badly, they would have called.”

“Well, if we make to Tuesday without having to pick her up, we’re home free.”

“Are you worried about Gage?”

“No. Because Gage could live anywhere, with anyone and he wouldn’t notice.”

“Quit saying that.”

“Well it’s true. He could be raised on foreign soil away from us and wouldn’t miss us. Somewhere like Kazakhstan.”

“You have to quit saying that around him.”

“Well, I don’t say it around him. IN CASE YOU HAVEN’T NOTICED, HE’S AT CAMP, HE CAN’T HEAR ME.”

“What do you think they are doing right now?”

“Having fun.”

“And they are so not thinking about us.”

When Julian was an early teenager his dad sent him to Camp Safety Patrol. His dad was a popular local neighborhood bank president and knew a lot of people – state troopers and local law enforcement among them. Some trooper along the way told G Boy that he should send Julian to Camp Safety Patrol. Camp Safety Patrol opened in the 1950s and was perhaps at it’s height of popularity a place where families sent their young sons to learn safety, we guess, like safety about firearms, fire, automobiles, etc.

During the 1970s when Julian was sent we think maybe that their popularity had dwindled, but the people who ran the camp wanted to keep it going and invited boys with a colorful past to the camp – those that were housed in nearby juvenile detention centers or maybe from homes for troubled boys in the Big City. Because when Julian went it was mostly troubled boys who intimidated the crap out of him. He was so scared that week that he doesn’t remember taking a shower because he had witnessed a boy getting beat up in the showers. You’d have to understand that Julian was about as well-behaved as they come – never breaking the rules (at least until college) – he was what you would call a good boy. Even now, when we talk about camp in any conversation, his mind wanders back to his terrifying week at Camp Safety Patrol. Let’s just say that it left a huge impression on him and nothing a little therapy wouldn’t help.

Julian still wishes to believe that his dad didn’t know he was throwing his son in to Camp Juvenile Delinquent.

Camp Safety Patrol came up a lot this week as we prepared the kids for their week at Camp (for sick kids). It took me nearly 3 days to prepare their belongings for camp; shopping; checking and rechecking the list. I had to prepare wearings for 5 theme nights, which included two trips to costume stores Saturday procuring an alien mask, funny glasses, a pirates patch/bandanna, a tiara, a witches nose, a bunny nose, and cartoon t-shirts. In the past three days I made two big bags to hold their sleeping bags/blankets. Gage’s was made out of the scratchiest Scooby blanket ever (bought for $1) and Quinn’s had butterflies. I also took a PKD convention attendee bag and repurposed it into a toiletry bag for Quinn. I know. Crafty.

This morning we woke up late (9:00 if you must know). The kids wanted biscuits for breakfast (10:00) and we finished packing and left the house a little after 11:00. There was line for check in and luggage tags, and another line for med check in. The bags o’ meds flying around was craziness with 4 people pulling lists and sharpie laden baggies and coolers and boxes. After lining up the meds and checking them off the lists, our person said “Two kids. You are one busy momma.”

Gage and Quinn boarded buses while I was still with the med line, which made me sad because I don’t have any pictures of them waiting. They were separated by gender – boys on one bus, girls on another. I saw Quinn first because Julian said she was tettering on the verge of a meltdown. And while some would think that is true, she was actually holding herself together. It was Julian who was on the verge of a meltdown. He said Quinn’s alligator tears in the corner of her big eyes just did something to him.

Maybe brought back memories of Camp Safety Patrol.

Quinn was sitting alone and there were only kids on the bus. Most of the older kids were sitting together. Leave it to a mom (me) to ask if anyone else was in Group 1. Two girls, sitting near each other were and so I brought Quinn to them. Imagine my happiness when we discovered that S and J were returning campers and very excited to go back. They both said things like “Do you like horses?” and “Have you ever been on a zip line?” and “My most very favorite part about camp is when we do plays at night!” I can’t say Quinn was a believer, but she was doing better. She only said “I want to get off the bus” twice but she never had a complete meltdown, which is what she would normally do in a new situation.

When I saw Gage he was sitting alone and he smiled at me, proud that he was in a seat with a TV above him. His friend from dialysis saw me come on and came and sat by Gage. Gage was happy, talkative and fine with me leaving. I saw Quinn one more time for a few minutes and she was doing okay. Not exactly happy, but not losing it either. I was actually quite proud of her for working through it because she wanted to go, but she was scared. I told her that we would only send her to where she was going to have fun and where she would be safe. When the buses pulled away we saw Gage standing raising his arms and we saw a counselor leaning back to talk with Quinn.

I came home and took at quilt free 3 1/2 hour nap. Then we went to dinner. And my phone rang. Imagine my surprise when the camp called, only to discuss one of Quinn’s meds. So far, no other calls.

Gage’s level on prograf the last two weeks has check out as okay (7 last week, 9 this week, but they were at different times of the days). I have no idea if he will need labs when he gets back from camp. The transplant team said that he won’t need labs at camp, which is good.

Back to packing them up!

Quinn has finished her season because she is leaving for camp before the County Finals next week. I’m fairly certain she would not have placed in the finals but I am not fazed by the lack of swimming championship titles. She really did well with the other kids (this is her first sporting effort) and we were most delighted about that because she tends to pull back where there is a lot of activity because she is fearful of her ability to keep up visually (her tracking is still a big issue in regards to her social development). But with a little encouragement, a coloring book and a Nintendo DS she was able to mingle and merge with the other kids her age. She also really had a great time seeing improvement in her ability and she was extremely kind to herself during the process of learning and racing and coming in last or 2nd or 7th or 1st (for her heat, mind you). During all of those places she was happy with herself. And proud of herself. And swimming was a great experience. And when she gets back from camp, she will be delighted to get her trophy! (Because she is also missing the team banquet!)

Gage isn’t nearly as thrilled as he was in the early days of using Jody’s kidney, but every now and again it comes up in conversation…like “Gage! Do you remember when you didn’t even have yellow pee?” No, really. Maybe the conversation doesn’t start that way, but there are times we actually do discuss the color of his pee.

Recently I had a very long conversation with Gage about his new kidney. We were starting to prepare him for his week at Camp with the other pre-post transplant (all organs) kids and we talked about how he will be around 100+ kids who all take meds. “What? They all take meds? Cool.”

This summer Gage is getting a taste of what it is really like to be a busy, energetic, healthy boy. I have to be honest though, healthy, energetic boys often smell. Why is that?

His level of activity is so extremely different from the rest of his life that we are noticing even subtle changes from then to now. These differences are still surprising me.

Sometimes they are awakening all my senses. Especially my sense of smell.

Thanks Jody. For our busy, energetic, healthy, smelly boy. And happy 15 month kidneyversary. I hope you can see him in action soon.

And smell for yourself.

Gage had labs Saturday because they were checking his prograf levels as a result of him being put on the drug that will hopefully stop the scalp-eating fungus that is running rampant currently.

The levels were fine. Perfect in fact. But he was only on the drug for 5 days and they wanted a repeat today. Gage was thrilled, as you might imagine.

They were running very behind this morning, which wasn’t great since I had a numbing cream on him and had to reapply two additional times. He did fine with the needle going in (under protest, of course) but when she had to keep wiggling it around to find a vein he was unimpressed with her and crying. Big droplet tears down the boys face, a low whining cry and the words “you are moving it and hurting me…you are hurting me…it hurts me when you do it like that…”

Ugh. My poor boy. He’s over labs. And two in one week? It’s too much sometimes. Today was one of those days.

You know who I am talking about . All of you staff people at the PKD Foundation…I would be talking to you. And about you.

I realize I am only 2 days post Convention, but I had to say THANKS for putting on such an informative event. After 7 times attending, I’m still learning. That could mean that you really chose your speakers carefully taking into consideration the many topics that have been presented in the past or it could mean I’m a litle dense.

I try to tell you in person what it means to be to be able to go to an event like this, but that is not always possible.

As a mother to sick kids, I spend a lot of time trying to find information about (current) treatments, research and what the future holds (treatments and research) and I am never disappointed at what I find at the Convention. In fact, sometimes there are things I haven’t even thought about yet, but there you go pushing them at me anyway.

I’m grateful that I have the information before I actually need it. I told someone there that while Gage’s dialysis and impending transplant was a wildly scary time for our family, I felt like at least I knew the basics of the phases we were entering. It didn’t occur to me that there are people who don’t even want to know about dialysis and transplant for their (kidney challenged) kids. But having that knowledge prior to Gage actually receiving both of those was exceptionally helpful.

This Convention has put my mind in the future again, with all the research on immunosuppressant drugs, the reproductive choices (or lack there of) for the kids, and about them moving forward in life as transplant recipients. I appreciate all that you do for this group of people; my people. I appreciate that you all are committed to raise awareness, and money and that you educate us. I appreciate, that while you are not affected personally with the disease (with the exception of DK), you are committed with a passion I’ve never seen in a group of staff anywhere. And I thank you.

Thank you for connecting me with other families that we look like (kind of). They’re mutants too and we love them and they are there for us in a way that isn’t really possible for anyone not living with crappy kidneys. These are the people that go with us on this scary path and without them I am not sure I could find my way each and every day of this journey. Thank you for bringing me to the people that will always share a history with me and my family.

There is no way to explain to you what it means to me to know that I have the most current information there is to draw from in health care advocacy for my kids. It means a great deal to me because my kids, wild Gage and sassy Quinn, only have us parents to depend on.

And well, they have you.

I can’t say I know all the risks and challenges my kids have in the future as a result of being PKD patients and kidney recipients, but I do know this: without the PKD Foundation behind me, I wouldn’t feel as nearly as prepared for them, whatever they shall be.

Many thanks and much gratitude. Now get some rest! Because it’s almost Walk for PKD time.

Gage and Quinn’s grateful mom,

Julia

For the first time in a long time I have been thinking of the ramifications of transplant on Gage and Quinn’s reproductive systems and choices because of a session called “Reproductive Issues.” There are immunosupressant and BP drugs that have been shown to cause fetal abnormalities. There are serious considerations for a transplant recipient regarding carrying a pregnancy. And well, there are a million questions I have about their growth and their entrance into puberty with all the drugs that they (will) require and the ramifications on their perfect little bodies.

Last year when we were in the mode of saving Gage’s life, I didn’t once think about these things.

But I sure thought about them today. That’s the thing about coming to the Convention each year. It forces one to look at things in the future. I didn’t have to go to that session. There was a perfectly good, well-crafted session on dialysis (um…right) and the reproductive session looked interesting.

It can be messy. This kidney thing.

There is so much to do here and I’ve not been blogging. Training for Chapters of the PKD Foundation. And sessions with awesome doctors talking about things I’ve heard before but never tire of hearing again, because we’re still in the fight long term as advocates for the kids. Today was nutrition (still helpful), the Science of ARPKD (had a light bulb moment when a doc explained something complicated about genes), and CHF (liver stuff that was graciously presented by Gage’s hepatoligist).

I’ve been hanging with other moms, which has been completely freeing. Not just because the majority of us do not have kids here, but because we can always be moms of sick kids selves. It’s an important for me to come to the National Convention because of the understanding from the other parents. It’s one place where a look between each other speaks volumes. It’s one place where it’s okay to laugh about the insane situations we find ourselves in with our sick kids. And it’s okay to talk about mutations and being mutant. it’s also the place where newcomers to the conference have glazed looks on their faces when the speakers talk about kidney failure and dialysis and transplant and the effects of ARPKD on their child’s little body. It’s the place where the same people find other parents who have been there and understand. The other parents who are attending their 2nd or 5th or, like me, their 7th Convention.

We’re all still here to learn. We’re here for each other. There is hardly an hour that goes by that I don’t think about that first time I walked into a session and met Dr. Wonderful, who empowered me with information. And confidence to be the advocate that Gage and Quinn needed. I think about how I met the people that would walk with me and share their own stories that are similar, yet different, but always familiar to our story.

And I don’t feel alone.

I’m taking a few days off to go the PKD Convention in Dallas. Somehow, someway a few of my favorite moms are all attending the conference without kids…just like me! Sadly, we’ve had to pawn the kids off on about 4 people for three days because Julian is at a big conference in San Fran for a big client. Seriously, the preparedness we’ve had to do is insane between lunches, meds, coverage schedules for picking up and sleeping with and making sure kids are ready for tutoring and lessons.

I have visions of us moping around all weekend, wondering how the families are managing. I am sure we’ll dash our way to the hallways in haste in between sessions to phone home to see how things are on the home front.

I see myself sleeping in a bed alone, only myself to take care of. You know you need to get away when the promise of sitting in conference rooms learning about your kids’ disease and research looks like way too much fun.

Off to Dallas! Will try to blog and maybe make my friends each do a guest post! Cause they’re fun like that.