Sometime in the last two weeks we noticed Gage was lighter. Brighter. He wasn’t his old self, but we saw glimmers of the old Gage. Glimmers of the boy who endlessly smiled, explored and climbed trees. The boy who played games with his family and most especially his sister. The boy who proudly built forts out of cardboard, blankets and clips.

About 18 months ago that glimmering boy from the past just stopped being bright. All his joy stopped. We couldn’t pay him to go outside. He didn’t want to be with friends. He didn’t want to interact with us. He hated life. He wanted to die. He wanted to kill himself.

Many days his sadness was at the height of sadness and we didn’t think he could be more sad and those days  felt excruciatingly long. We were sad with him every single day. But on those really dark days, our sadness filled us and was overflowing like our bodies were drowning in water and we could only breathe every so often. Not nearly enough. I imagine Gage felt the same way.

“We’re as happy as our saddest child.”

So a couple of weeks ago – nearly a month after his anti-depressant was upped to the max his conservative doctor will go – his mood lightened. He smiled without looking like it was killing him.

At the end of each day when we realize that Gage is not completely shut down we celebrate. My beloved and I look at each other when we hear Gage settling into sleep we say, “I mean, he’s better, right?” Each day we hold our collective household breath until he is in bed and we realize that he smiled freely and played instinctively.

We’re stilled scared to believe. We’re scared to let our guard down and beleive that our boy and our family is on the road healing.

We hope, ever so slightly, that our old Gage is returning to all his glory.

For the last 18+ months Gage was in a downward spiral, as we all were being in the same family with him. We’ve been in chaos with him trying to figure out how best to help him. Therapy. Drugs. Walking on eggshells. Loving him unconditionally.

That’s not a statement about our commitment, it’s a statement of what we’ve been doing in the face of turmoil. Nearly a year ago we embarked on a search for a doctor that would deal with prescribing anti-depressants for a 9 year old, post-transplant suicidal boy. Most days I cried about not being able to help him fast enough. Literally NO ONE had a sense of urgency like we did. When we did find a doctor (psychiatrist) she moved cautiously slow in the evaluation process. It was nearly two months before he started an anti-depressant and another month before we saw relief of the suicidal tendencies.

We (and that includes the team of educators) held him together with sheer will, resiliency (the team’s), tenacity and prayers. His behavior was an outward manifestation of inward feelings of despair and hopelessness. He didn’t want to see friends, go outside, play or engage with the family. He was filled with rage most days and everyone knew it.

Often throughout the ordeal we’ve heard from Gage heartbreaking statements of his state-of-mind, like:

“I don’t know why I am the way I am.”

“Everyone hates me.”

“I want to die. Why don’t you stick a knife in me.”

“I’m ugly and stupid. I’m an idiot and I’ve always been an idiot.”

“That is why you hate me.”

About 6 weeks (?) ago I asked the psychiatrist to up the anti-depressant. I’d been thinking while he was better, he was not happy. He was going through the motions because we were forcing him to. Life? He could have taken it or left it - to him it did not matter that he was on the planet. Sit with that for a second.

Then think to yourself that nothing mattered. No joy. No happiness. Yes, it’s true, he didn’t want to kill himself or have us kill him, but he had absolutely no joy.

But since the med change we’ve seen glimpses of the old Gage. The one who loves nature. The one who loves to play tricks (that aren’t dangerous), the one who likes to play games. The one who smiles.

I can’t tell you how hard it is to write that sentence without crying. Because for the first time, too, we think we might be on the right track. I know we have a long way to go, because depression, PTSD and anxiety are chronic conditions, just like PKD. For PKD a transplant is a treatment, not a cure. For depression, meds are a treatment, not a cure. We still have to work through the emotional aspects of why he is depressed and anxious. So we’re still a long way from where we he needs to be.

But for the first time in a very long time, Gage’s smile is from within and that is enough for today.

We are marking month 29 of Jody’s kidney donation to my little, crazy, challenging, curly-headed, funny boy. It seems that his spirit might be lining up with his happy kidney. The kidney has found a home in Gage for 2 1/2  years and for that we are grateful. Not all new kidneys do this well. Not everyone keeps their new kidneys for 2 1/2 year – we know this.

But today we celebrate that Gage has kidney function. I shutter to think about what it might have been like if we had lost the graft. If Gage had to deal with that along with trying to just hold himself together to make it through a day.

Thanks Jody. Your kidney ROCKS. And we think you are pretty special, too.

I know these are some tough times. Believe me, I get it. Business is slow and we’re cutting our expenses where we can as many people are. That’s one of the reasons I’m reaching out to more people to fulfill our family’s mission through the PKD Foundation so that…”no one suffers the full effects of PKD.”

It’s Walk for PKD season time and I’m reaching out because our large corporate donors just aren’t able to give as last year. People are shrinking their donations, but they are still giving to the Foundation in hopes to keep research, eduction and advocacy moving in the right direction. As I sit on the Board of Trustees I am able to witness first-hand the commitment of the Foundation to keep the momentum up so that research and patient and provider engagement are at its highest. I’m proud to say that the Foundation has the non-profit’s highest ratings for standards in the industry in expenses vs. amounts going back into the Foundation’s mission.

And one of the most important and rewarding things I do is to play a small part in that mission. Through the Foundation I get to talk with countless parents who are facing a diagnosis of ARPKD to offer support and information, I get to meet people who’ve become lifelong friends. I get to be a part of a group of people who know exactly the “full effects of PKD.”

My kids face the effects everyday. That is why I do this. I could be a particpant in the event and not be in charge of planning it, but every once in a while you have to step up and be an example. I want to be an example to the kids – to show them empowerment in the rawest form. To show them that giving back is also a way to feel empowered. Because really, the research that I fight for will not change the course of their disease. They will STILL need more than one kidney transplant to live an average lifespan. They will need that or they will need dialysis…just to live. Those facts will NOT change.

But sometime in the future there will be a family, just like ours, who upon hearing that their sweet baby has ARPKD, will also find out that there is a treatment to help slow disease progression and change the course of their disease. And I feel good that I can play a small part in that fact.

So I am asking for your help. Because of the times, as a whole, the PKD Foundation is reaching out to more people, to give less. If we all can give a little, imagine the power we’d have. If just 1/2 of the partipants from last year raise $20 from 20 people we could raise roughly an extra 2.5 million dollars. Two Point Five Million Dollars. Trust me (have I ever lied to you?) that the Scietific Adisory Committe, the BOT and the staff will make the most of that money to help research, education and advocacy.

How can you help?

Very simply you can go to my personal page and donate $20. Visit this link and donate $20 by credit card and during the process you can leave me a message – that I would love to post right here.

***Gage and Quinn fans/teachers/therapists/friends, email me if you want links to donate to them personally***

If you want join in on our team to further our cause, click on My Team off my personal page or go to Gage & Quinn’s Team page and sign up to join our team (we’d love for you to join us Walk day, but if you can’t that’s okay! You can still help!) Then ask for $20 from 20 people.It’s that simple. At the bottom of the page you will see who else is on our team and you can visit their pages to see why they Walk. There are largely two reasons. Gage. Quinn.

If you are intersted in forming your own Gage & Quinn’s Team in your city, visit the Walk for PKD section and see if there is a walk in your city this fall. I’d be happy to help you set one up, hook you up with the volunteers in your city and engage you in a fulfilling mission. To help others with PKD in honor of my two cuties; Gage and Quinn.

I mean, really, can you resist? I mean, look at those faces?

Julian: “Quinn, get up. Get up now.”

Quinnlin: “No.”

And to all requests:

“No”

“No”

“No”

Julian: “If you say no one more time, just ONE more time, you will not be going to M’s house after school.”

10 minutes later

Julian: “Quinn, do you want a poptart?”

Quinnlin: “No…well….UM…MAYBE. MAYBE!!”

—————————-

And from the never negotiate with terrorists file:

Gage to Julian: “If I have a really good year at school, will you get a mohawk?”

Julian: “Well, what do you think is a good year? How about As and Bs?”

Gage: “Well, what about one C?”

- There is nothing like a child’s transplant on the books to get mom into checking things off her own health care list…today mammogram (girls are just fine, thanks) and eye appointment (6 months late), teeth cleaning in the next 3 weeks.

- Same goes with the house – I am CRAZY with plans to finish a few things before Quinnlin’s big day. So if you have any time and want to clean out a closet (or with me, let me know. I can be flexible with your schedule and offer an insane work environment with absolutely no benefits except the reward of a job well done and the thanks of a grateful mom.

- The bathroom is ready to be primed and painted and so I think it’s reasonable to expect that will be done by the end of the week. Going to love our $110 redo. Probably going to do a quick rearrange on the living room – which we are making into a playroom. Selling some things on craigslist I hope.

- The hospital stay is a distant memory, kind of (meaning I have my own PTSD because of it). It’s all a blur really. As is Quinnlin’s appointment to a Minute Clinic yesterday to confirm/treat and ear infection. The NP didn’t want to treat her because they have rules about treating immunosuppressed individuals. It took a while of me telling her Quinn’s immune system wasn’t compromised (yet!) and her placing a call to her supervisor.

- Quinn(lin)’s rising creatinine and BUN (2.9/92) are adding a certain level of drama around the house (and just for the record, we’d totally be discussing dialysis if she weren’t scheduled for a transplant). She is very upset about the amount of itching she feels and the amount of scratching she is doing. Nothing is offering her relief, except maybe some compassion and understanding. She just wants to be heard. And heard she was from about 12:30am to 5:45am – she’d woken herself up by scratching off a blister and it was not pretty. I’m amazed Gage didn’t wake up to find out how we were torturing his sister. We’re worse for the wear today people.

- Working on PKD Foundation Walk for PKD sponsorship solicitation today as well as new business stuff for us to help pay our escalating insurance premiums. If you know anyone who’d be interested in a business/personal PKD sponsorship of our event in Atlanta, please let me know. From $100-10,000 ranges…so something for all businesses. Soon I’ll be linking our walk pages so you can donate! We have a team goal of $40,000. I know. Double last year. Aim high, right?

- Julian asked me out on a date for this coming Saturday. Nice surprise. It was by text during my mammogram, but hey, wives can’t be choosy right? Ah, the romance. Apparently, Gage didn’t want us to go out for dinner (reserved special lobster dinner!) last Thursday, you know, with him acquiring MRSA all. And yes, we’re sanitizing fools right now. And Gage is very good about keeping the area covered. So they allowed him back to normal living. Which for him, has its own meaning, but you get the idea.

-  Off to get the kids and delivery hospital excuse forms and medication permission forms at school. Then some business work and then off to see how much I can pay for glasses. The highest in the past was $500. I DO NOT have $500 to spend on glasses, but I am fond of seeing clearly, so credit it is.

Happy Monday all.

Gage’s hospital stay wasn’t horrible. He basically felt fine. The last time we were there was his kidney biopsy. It wasn’t a great experience…they located the kidney on ultrasound, the doc turned his back, someone lowered the top of the bed and when the doctor went in to pinch out a bit he had to search around in there, potentially hitting the liver. We had to stay for the day, draw extra labs and Gage was also in more pain because of the searching.

The time before that was the stint removal after transplant. Not pleasant, although he was put under. But he had a horrible time coming out of the anesthesia and quite a bit of pain. The time before that was transplant, which was extremely difficult for Gage – especially the first few days. Just under two months before that was the completely mysterious problematic cath replacement (and subsequent missing surgery notes and 3 day pain for Gage). He’s had a few stays for dehydration and all the testing that come along with having a chronic illness.

In comparison to Gage, Quinnlin’s experiences have been minimal. She’s of course had tons of testing. She’s had a broken collar bone. She’s had a couple of stays for dehydration but those were quick fixes.

What she hasn’t had is multiple surgeries or IVs or critical life-saving dialysis. I worry about her and how her lack of patient experience may impact how well she deals with actually being a patient.

Over the years we’ve not hidden much from the kids about their disease, treatments, tests and outcomes. Except death. We don’t get into that with them. Unless they ask and even then we are truthful, but guarded with our answers. Obviously no matter how much we shield them from risk of death knowledge, it is there. Proof that it is lives in Gage and the words that are now coming out of him, things like “I knew I could die. I heard doctors say I could die.”

My Quinnlin is in for a shock. She is scared. She is surgically untouched. And it will be rough. I know she is not ready for the pain of surgery and the recovery.

Gage’s stay this past week made me think of Quinnlin. It gave me more insight into what else I can do to help her prepare for the realities of being a kidney recipient. Being in the hospital in the new transplant recovery unit (after ICU) gave me the insight of knowing what it will be like for me as a caregiver and us as family to be there in that space, saving precious time from learning the ins and outs – while on the job of caring for her needs. The hospital has it’s own culture and the memory of it has laid dormant for the last couple of years.

Being there this past week got me into the right frame of mind as hospital caregiver – which is very different than being regular mom caregiver.

It goes without saying that I would rather Gage didn’t have to experience the infection. And get IVs. And miss school. And sit in one room for three days. But if I have to look for a silver lining, it’s a good reminder about how to support my girl through her experience.

But also, how to support Gage in the coming weeks. It’s been no easy road for him (or ever, really) the last year and there is no doubt in my mind that Quinnlin’s transplant will bring up strong feelings from him. It is sure to be an ugly time as he remembers his own journey.

It is really hard being their mom sometimes. Really, really hard to watch what they have to endure. I don’t always know which way to turn to help them. I make a lot of mistakes. I change my mind about the best way to help them through their journey. But I do my best. A lot of times I am sad, even when I am thrilled. I am thrilled that Quinn is getting a new kidney while avoiding dialysis, but she still has to endure so much just to live. I’m thrilled that Gage is alive, but he has had to go through so much just to exist, in a life in which he is not happy.

His hospital stay is both a bad and good reminder. Of where we’ve been as a family, where my kids have been in their short lives and how far they’ve come. But also what else is ahead for them (oh, the things we don’t know they will have to endure) and the struggles and triumps we will, as a family, surely face.

Upon inspection this morning, the bite/staph area looks much better. Three! No, Four! Doctors declared it improved and said things like, “Treatment is working!” and “Don’t know what kind yet!” and “We’ll just keep doing more of the same!”

So that was that. We rested well, but I had to get out of the room and so I took a trip to the mailbox and the cafeteria. I know, exciting! I went around 8:20 and things are nice and slow around here on a Saturday morning. But you know, the hospital is no place to live. I just met a family in person that I met online and they are 7 weeks into their stay, hoping to go home in the next few days. So, you will note I am not complaining about our stay other than Gage is confined to his room, which is a bummer for him.

In no particular order here are some bullets…(Lazy!)

- The hospital does offer free wireless, but you have to call someone to get the name of the network, which I find annoying. Especially when I can walk into a coffee shop, airport or McDonald’s and painlessly connect – and I don’t even have to live at those places! How about if you know some big wig in technology you call them and get them to offer the hospital some free service. Or better yet, if YOU are a big wig here, work that out!

- We’ve been getting excellent care! I love me some nurses!

- My stone, is effectively gone. Blown to smithereens. He reports I don’t have anymore right now, or they are too small to see or fell. I didn’t have the conversation with my doc, but I have a follow-up in a couple of weeks and will be having a big discussion about patient care. I agree Just Me, they could have done something. But didn’t. And sadly that is a reflection on my doc, whom I love.

- I hope to sneak away to take a shower and scrapbook for a couple of hours with friends. I have about 1000 pictures to cut and crop – so easy to throw together at home and sit with friends to do for a while. Then I will be back.

- As of yesterday Gage was still pulling out YUCKINESS out of his arm which he enjoyed immensely. But the amount is decreasing. If I can also describe for you that he has two holes in the sore, separated by a piece of skin…but Gage figured out the skin is like a bridge! So it’s really just one hole! Just visualize for yourself if you will. And then ask yourself how he figured that out.

- A lap board will be extremely helpful during Quinnlin’s stay.

- Many of the rooms in the old building face the center and a rooftop. It would be awesome if there were a little rooftop garden to look at while stranded here. Or some kind of kids graffiti even. We see no outside life, no street, just the sky and other buildings. Just in case you are on a planning committee at Children’s.

- Where I prove that Intuition Always Wins. Quinnlin’s creatinine is very much on the rise. It’s now at 2.9 – which surely moves her into where the transplant team had wanted her to be to route her to transplant. Sad thing is if we had waited until now to proceed to insurance approval and donor testing it would be another 3-4 months before we could proceed to actual transplant. And there it is extremely likely that she would have needed dialysis if she’d followed Gage’s course, which many who are involved in her medical care believed would happen. I pushed. Made people listen. Worked within the system to make it happen. I’m not ashamed to admit it either. And I’m won’t hide from the reality either because it’s a reminder to me and hopefully to you to always listen to your inner voice.

- I just this very second learned we are jail breaking out of here! Gage does have MRSA, but it responds well to an oral antibiotic and now that it is healing and not hurting him anymore we can leave. He can even return to school…much to his dismay. He doesn’t really want to leave either, because in the hospital, the world does not revolve around the sun, it revolves around Gage.

- Let’s just consider this little stay a refresher. A little test run on next month’s stay for Quinnlin. I have to say I do have the list started of the things we need next month. I hate to say it, but it really has been helpful. Silver lining and all.

More later…am needing to get our things organized. Don’t want to waste anytime on that if we can leave. For your viewing pleasure…Gage’s infection yesterday and it looks MUCH better now. And a pic of Miss Quinnlin often sits like this because she itches badly. And her feet the most. So she likes to examine them and look for sores. We are full of sore seeking kids this week. I’m done though. I’m trying to make scrapbooking today.

Squeamish Advisory Alert

Friday, August 14 – Around 4pm Gage points out a bug/spider/something bite that is irritated. It’s about an inch and a half to two inches around, has a clear center point (white headish). I call the ped at 8ish and tell her that at 4pm I circled it with a pen and it hasn’t changed in width but maybe has in height. She said she would just watch it but seeing as how Gage is immuosuppressed, she confirmed that I should call the transplant team.

Saturday, August 15 – We don’t notice a change. Gage didn’t either. So he and Julian went camping overnight (in the city with scouts) and returned Sunday morning.

Sunday, August 16 – By late afternoon it’s changed at lot. I don’t know what it looked at in the morning because I was not there, but apparently none of us checked on it – or it didn’t bother Gage enough for him to notice. Around dinner we started taking about calling the doctor again. During the afternoon I was sleeping off a kidney stone attack that nearly landed me in the ER myself, but luckily it subsided. I slept off some serious drugs from 5-8. By 8pm it had rings around it, like a target about 6 inches wide at its widest area. I called the nephrology team about it but by the time she called back, Gage was on the way to the ER with Julian. Julian insisted (didn’t have to very hard) on taking Gage to the ER (first time ever) because we both feared a kidney stone attack. The ER put warm compresses on it. They tried to drain it. The perscribed an antibiotic. Julian and Gage were on the merry way and home around 12:30am. Gage went straight to bed.

Monday, August 17 – We woke Gage up for school like any other morning. The bite was better (no ring anymore) but still inflamed. Not particularly tender and not hard. Not bright red, but light red. Not much change throughout the day into the evening.

Tuesday, August 18 - It looked worse. At school I guess Gage picked at it and they covered it with a band-aid. By the end of school he was holding his arm up saying it hurt. Tuesday night Julian had dinner with a client and while he was gone I checked the thing and it was worse. So I called the ped again (happened to be the same one from Friday) and recounted the entire story and we agreed that I would take him into the ped office in the morning, or if it looked worse I would take him to the ER. He didn’t have any other symptoms (although honestly, his prednisone can mask a fever, but can’t mask you feeling bad – and Gage was acting like normal Gage).

Wednesday, August 19 - Before I woke him I knew I would take him to the ER. I just wanted someone who’d seen some nasty bites/infections to see it. Interestingly enough, the ER is strangely quiet at 8:00am on a weekday. We were seen within minutes of arriving and within 15 minutes of that the doctor was taking admittance.

- 10am – I start felling a twinge of kidney stone pain. They start the first round of IV antibiotics.

-11am – I am feeling a lot of pain, but am on a conference call for work (client in office with Julian).

-12-3pm – It’s all kind of a blur. They admit Gage, move him to a holding room. Then move him to floor 5, we settle in. During this time I call my urology office to see if I can swing by for a pain shot – I EXPLAIN MY SON IS IN THE ER AND BEING ADMITTED TO THE HOSPITAL – and they say no. There are no doctors available to approve it and the “supervisor” said I since I had a follow-up appointment anyway Thursday (today) I could discuss my pain medication needs. I cried, I sobbed. “I can’t believe you aren’t helping me! You have 5 doctors and none of them are available? I was there on MONDAY, so you can confirm I have a kidney stone that I am trying to pass! Yeah! Thanks for all your help! So helpful you have been!”

Some time during this period my mother joins in the fun that is watching her daughter wither around in agony while comforting her grandson, during the admissions process. You know I am the favorite child, right? Cause I know how to show them a great time. And my parents get to do extra stuff for me! Each and every person that entered the rooms (we had 4 total) got a quick, “Hi, I’m his mom, I’m passing a kidney stone, that is why I look like this!”

During that time I also said things like this:

“I know, it IS worse than labor!”

“I know, I called my doctor, he isn’t in.”

“I know, they are supposed to blast it on Friday.”

“Yeah, I know, I do have pain meds, but I’m throwing up so they aren’t going to help until the pain subsides.”

“My doctor’s office WON’T GIVE ME A SHOT for some sorry-ass reason.”

“No, I won’t go to the ER cause you are admitting my son to the hospital.”

“Gage, get down from that cabinet! And put the bed back down to a bed position!”

By 5pm we’d seen 10 docs and residents and fellows and everyone had a good look at the nasty infection. Some believe MRSA…Staph…Spider…No spider…Cut/infection…so they are growing or not growing cultures.

Thursday, August 20 - There’s a lot of discussion of lancing the thing. To let the surgeons come take a look to see if they think it will help. The newbie doctor takes a look then is going to talk to the head guy. I step into the hall, because when the newbie doctor said “Bedside” surgery to lance it I kind of contorted my face. “Um, no, you can’t take a knife to him at the side of the bed with some meds to make him tired. One, it doesn’t work. Two, he has some unresolved issues around some medical stuff that are adding to his emotional problems and I won’t let you try to cut it in front of him. If you want to do that we need to put him under. You could even do it like they did his biospy…what was that drug? Started with a P. But no, the rest do NOT work – Gage could put a lego set together doped up on that stuff.”

By the time both docs returned a couple of hours later (The cutie docs must have had some flirting to do!) Gage had noticed it started to drain. Gage was open to trying to squeeze it and the docs said sure, but let’s all get some gloves on…and so the doc and Gage, together, squeezed out the worst kind of infection yucko stuff I’ve ever seen. And there was a lot of it. It was fascinating and disgusting. More than once Gage, smiling, said, “Daddy would be throwing up right now!” and “Daddy would not like this.”

It is not done draining. And it’s still quite red. It’s not as hard or as tender as it was but we are certainly not on the road to healing yet. He’s had three IV treatments. You see, they have to measure the amounts in his body because the drug leaves through the kidneys on the way out. So there’s a balance of infection fighting – kidney protecting going on here. We could be here a few more days. I know I am not holding my breath.

And I’m not holding it because at 5:30am tomorrow I arrive at my doctor’s office for the blasting of the two remaining kidney stones. The procedure starts at 7 and I’m told I can be back here with Gage around 11.

I  had a quick little pity party with Julian where I said, this was ridiculous, it was tooooo much to handle, it’s so overwhelming, it’s so much to deal with, blah, blah.

I considered NOT doing the procedure with them because of the IGNORING MY PAIN FACTOR, but I like my doctor and he was on vacation, and I shouldn’t fire him without telling him why. Plus, I only have a few week window to get these out before Quinnlin is on this very wing recovering and I will not be taken down again during one of my kid’s transplant recoveries by a kidney stone.

How insane is it that I just wrote that sentence? And how is it that IT IS COMPLETELY TRUE. This really is from the I Can’t Make This Shit Up file, isn’t it? Is it me? Or are we the family you look at and think to yourself, “Well……at least we aren’t them!”

Really, we’re that family, right?

Come on, you can tell me.

Later, I will post a couple of cute pictures of Gage and Quinnlin, when Gage actually let his sister touch him, by letting her sit in his bed, NEXT TO HIM, IN THE SAME BREATHING SPACE AS HIMSELF, THE LORD OF ALL THINGS SHE DOES, even though he protested at first, saying:

“You are going to get your own bed here in a month, geeeeeeez!”