From Julian's COTA journal.
Cheryl Humble is Julian's kidney donor. I asked her if she'd write something for the blog, as a way of letting you get to know her story. She wrote this yesterday.
So it's Sunday.....one more shopping day till surgery :)
Just kidding, though I have been here three weeks straight now and I have done my fair share...........gotta fit in here in California!!
Well I'm excited to see it all coming together....it's been almost a year now since me and Stacy first talked about kidneys and such, and to be almost hours away is So great.
So this is how it all kind of began.
Stacy worked with my twin sister for six years in Colorado, so I knew her only in passing. Then last July I was in Colorado visiting, and went to see the fireworks with a "lot" of people from the school and a rainstorm descended obstructing the display.....leading to way too many people cramming into a house to wait it out.
And so I bumped (literally) into Stacy and there was no moving at that point so we talked and talked and had such a blast, we ended up hanging out the next day too and we kind of discussed Julian and his situation but not in depth, just sort of in passing.........they had a doctors appointment next day and I tagged along. Was curious about my blood type, not knowing was driving me mad (How could I not know!?!?!?) :) oh the madness.
So we went and got me blood typed just for curiosity's sake and we turned out to be the same. And so I flew home the next day to Massachusetts and I thought about it a lot....just being in the Children's hospital briefly got me nostalgic.
I grew up with multiple birth defects as well, and spent most of my life (20 and earlier) in and out of the Shriner's Children's hospital in Springfield, Massachusetts. It was always difficult being there and then coming home and not having anyone understand.....most of the time no one asked any questions because they didn't understand.....so it always felt like a large part of my life was unknown to anyone else, and I was just half myself because I had/have so many wonderful memories of my hospital stays, but no one really seemed to want to know, so it's always been my own.
Anyway being with Stacy and Julian at the Denver Children's Hospital really made me feel connected to his life ......now and what it will be. Started thinking a lot about donating my kidney, it's a huge process as I've learned so I told her I wanted to and we started slow, tests here and there..............temporarily talked about him waiting to get a cadaveric kidney last November, but I still really wanted to do it even though we didn't talk about me still doing it.
But it came up again in April of this year and I really, really felt like this was what I wanted and was meant to do.
Was able to move out of my Apartment by April 29th, moved all my stuff into my parent basement and flew here to California April 30th.
Was supposed to be here for three days of testing and then home till further notice, but two things happened:
"A of all" , I lost my wallet :( somewhere between the Ronald MacDonald house I was staying at and a Two hour walk that took me through a park, under an overpass, through a train station, downtown , in and out of six shops (one being an amazing chocolate shop) and ended at Borders book store :) so yeah, wallet as good as lost at that point.
And "B of all" the kidney coordinator happened to ask me to stay longer the day I was supposed to fly home and maybe we could do surgery the following week!!!
So here I am, My wallet was conveniently returned to me a week later before a three day trip to L.A. so that was a surprise and boosted my confidence in people in general ! had everything in it including my $12 cash, and even my library card ( of course I brought it to Cali!! )
So now we have a set day for surgery and its SO close......
I check in to the hospital tomorrow sometime and then surgery Tuesday. I feel ready and excited to see what comes of this moment in time. Life sustains life, and I just can't believe I get to be that for Julian.
I feel as though God's showing me so clearly how my life has been made for a purpose and everything fits together so perfectly if I surrender it in His hands......who would have thought me being tiny and O+ and a waitress with lots of time on her hands....would have made me capable of being a suitable kidney donor, or that years spent in the hospital would make it a more comfortable process by eliminating a bit of the fear of the unknown.
Not that this is the big climax of my entire life, but it's exciting to look at the process of my last 27 years and to see all God has done, and How he takes things in the past and fits it perfectly into the present, showing me everything is for a reason.
I am grateful to be here, and proud to be a part of Julian's life............. May he live to be 100 with my coffee enhanced kidney :) (I tried to cut back in preparation!!! it just didn't work out)
Thanks everyone,
Cheryl
Wednesday, December 24, 2008
Tuesday, December 23, 2008
05.18.2008 - The Calm Before...
From Julian's COTA journal.
I'm at Starbucks across from the Ronald MacDonald House, where Julian and Stacy are taking a nap. Today is the last day before we "turn the page."
It's been a good weekend - low key. Another trip up to San Francisco yesterday around lunch, followed by another trek down PCH to Pacifica to watch the waves from the pier. Lots of laughter, lots of quality time. Today we went to Whole Foods before heading to the Stanford University campus to walk around in the sunshine. Good times running around the cobbled cloisters and watching student families play volleyball on the quad. He's so happy and so full of energy.
Tomorrow, we report for dialysis at 9 a.m. Immediately following session, we head to admitting, and then on to our room. Cheryl will be admitted tomorrow as well. They'll start Julian on his transplant med cocktail tomorrow evening.
Then Tuesday is surgery.
I was just on the phone with a friend, who asked if we're starting to get nervous. I told him nervous was an understatement. We've been told that the developmental milestones post-transplant will be pretty mind-boggling, and that he'll have "all kinds of energy" - like he doesn't have energy now.
Still, it's an elective surgery with a 97% survival rate.
Which are pretty good odds.
But I still wish there were another way.
Almost time for the fam to wake up, so I'll sign off here. Stay tuned.
And don't forget to follow the news at Twitter.
I'm at Starbucks across from the Ronald MacDonald House, where Julian and Stacy are taking a nap. Today is the last day before we "turn the page."
It's been a good weekend - low key. Another trip up to San Francisco yesterday around lunch, followed by another trek down PCH to Pacifica to watch the waves from the pier. Lots of laughter, lots of quality time. Today we went to Whole Foods before heading to the Stanford University campus to walk around in the sunshine. Good times running around the cobbled cloisters and watching student families play volleyball on the quad. He's so happy and so full of energy.
Tomorrow, we report for dialysis at 9 a.m. Immediately following session, we head to admitting, and then on to our room. Cheryl will be admitted tomorrow as well. They'll start Julian on his transplant med cocktail tomorrow evening.
Then Tuesday is surgery.
I was just on the phone with a friend, who asked if we're starting to get nervous. I told him nervous was an understatement. We've been told that the developmental milestones post-transplant will be pretty mind-boggling, and that he'll have "all kinds of energy" - like he doesn't have energy now.
Still, it's an elective surgery with a 97% survival rate.
Which are pretty good odds.
But I still wish there were another way.
Almost time for the fam to wake up, so I'll sign off here. Stay tuned.
And don't forget to follow the news at Twitter.
05.16.2008 - Details
From Julian's COTA journal.
I'm sitting with Julian in the dialysis clinic. 30 minutes to go. Clubhouse Disney is on the overhead television, and Dennis is keeping Julian entertained with purple balloons that bear a suspicious resemblance to medical exam gloves. Julian is laughing. The nurses here love Julian, and tell us that Julian is one of the sweetest little ones they've ever had in clinic.
Dr. Alexander visited with us this a.m. More details about next week's surgery. We'll report for dialysis on Monday morning as usual. Once we're finished here, we'll march right over to admitting and check Julian and Cheryl in. They'll start Julian's transplant meds on Monday afternoon. On Tuesday morning, they'll remove Cheryl's kidney; then at noon, Julian will go in for the transplant. The surgery should take around 8 ours, barring complications.
Once's he's out, he'll be in the PICU for a few days. Dr. A explained that their number one priority is making sure the kidney thrives during the first 48-72 hours. As such, it's very likely that he'll be sedated and intubated during that time.
Lots to think about over the weekend. In the mean time, we're going to do what we can to make this this weekend a special one. I have no idea what that means in practical terms, but I'm sure we'll think of something.
I'll be posting more over the weekend, as well as through the surgery. However, once Tuesday hits, it's unlikely that I'll have ready access to my laptop. So, the best way you can stay up to the minute is to visit me at Twitter.com
http://twitter.com/dphillips
I can post mini-blog entries via text messaging from my phone, so I can do it a lot more frequently. A handy tool in times like these.
Almost time to disconnect Julian from the machine. Will post more later.
I'm sitting with Julian in the dialysis clinic. 30 minutes to go. Clubhouse Disney is on the overhead television, and Dennis is keeping Julian entertained with purple balloons that bear a suspicious resemblance to medical exam gloves. Julian is laughing. The nurses here love Julian, and tell us that Julian is one of the sweetest little ones they've ever had in clinic.
Dr. Alexander visited with us this a.m. More details about next week's surgery. We'll report for dialysis on Monday morning as usual. Once we're finished here, we'll march right over to admitting and check Julian and Cheryl in. They'll start Julian's transplant meds on Monday afternoon. On Tuesday morning, they'll remove Cheryl's kidney; then at noon, Julian will go in for the transplant. The surgery should take around 8 ours, barring complications.
Once's he's out, he'll be in the PICU for a few days. Dr. A explained that their number one priority is making sure the kidney thrives during the first 48-72 hours. As such, it's very likely that he'll be sedated and intubated during that time.
Lots to think about over the weekend. In the mean time, we're going to do what we can to make this this weekend a special one. I have no idea what that means in practical terms, but I'm sure we'll think of something.
I'll be posting more over the weekend, as well as through the surgery. However, once Tuesday hits, it's unlikely that I'll have ready access to my laptop. So, the best way you can stay up to the minute is to visit me at Twitter.com
http://twitter.com/dphillips
I can post mini-blog entries via text messaging from my phone, so I can do it a lot more frequently. A handy tool in times like these.
Almost time to disconnect Julian from the machine. Will post more later.
05.15.2008 - Dates & Memories
From Julian's COTA Journal.
When I was very young, my family lived in Calgary, Alberta.
My memories of Calgary are fragmented, like little clips of video in no particular order. I remember our house and the surrounding neighborhood, the back alleys that connected us to our friends, the Safeway down the street; I remember hikes with mom, past those crazy magpies on the path to the river; I remember sleepovers at Gramma Julia's house, and how she'd walk us to 7-11 the next day to buy us candy; I remember going to the hospital with my sister so we could both have our tonsils out; I remember the car crash where some guy ran a red and t-boned my parents; I remember watching the delivery guys unload my dad's new radial arm saw, and I remember the Christmas when I got my very own hammer – a real one! - and a bag of nails.
But most of all I remember being happy.
I also remember leaving Calgary, when my family relocated to Regina, Saskatchewan. I remember my aunt & uncle taking my sister and I to the Grey Cup parade while my parents loaded up the truck, and I remember my mom pulling up the sign on the lawn before we pulled away. I don't remember the trek from Calgary to Regina (7+ hours!), or our arrival in town, or even seeing our new house for the first time. All I really remember about that night is my sister and I eating apple sauce, using a moving box as an impromptu table, in a dining room otherwise devoid of furnishings; later we rode around on our tricycles in the vast, unfinished basement.
It was December 4th, 1974. I was three and a half.
Actually, I was 3 years, 7 months and 2 days old.
I know – it seems random. It only stands out for me now because today Julian is exactly 3 years, 7 months and 2 days old. And today we received word that Julian's kidney transplant will take place next week, on Tuesday May 20th, 2008.
No small thing.
In the same way my parents started a new chapter in their life, relocating to a new city where they knew literally no-one, I feel like Stacy and I are about to turn a page in our own story. It's one we've been anticipating for a long time, but now that it's here, I can't help but feel nervous. Once that page is turned, we have no idea what to expect.
Everything seems unknown. And that can be unnerving.
Don't get me wrong, Stacy and I know deep down that the course we're on – dialysis, transplant, and subsequent care – is the best one for Julian. But every now and then we have little pangs of doubt – do we really need to do this? Is there any other way? I mean, does he look sick to you?!
Being at the Ronald MacDonald House has actually been encouraging, because several of the families are on the same path we are. One family in particular has a daughter, younger than Julian, who had a kidney transplant a couple months ago. And she's doing great!
Ultimately, we're all in God's hands. Stacy and I feel distinctly that God has led us to Palo Alto, and has brought Cheryl into our lives as well. I'd love to get some of her thoughts here on the blog, because I know this has been a unique journey for her as well. Maybe this weekend...
Anyway, all of this is stirring in my mind because it occurred to me that Julian will probably remember it. Maybe not all of it, and maybe not in chronological order. But I remember what it was like being his age, seeing the world through three-year-old eyes. And if his memory banks are open for business, then what's going on in our lives right now – the dialysis, the hospital, Cheryl and the surgery – will all be indelibly recorded in his little mind.
I'm not even sure why any of this is important, but somehow it seems like it should be.
Maybe because in a new way, Julian is on this journey with us now. He won't remember his stay in the NICU in Denver when he was born, but he'll remember Palo Alto.
Years from now, we'll haul out the archival mass storage device (future-speak for photo album) and flip through the pages. His face will light up as he remembers the cable cars, the 'Donald' house and the beach at Santa Cruz; sourdough at Fisherman's Wharf, coffee at La Baguette, and the waves at Pacifica.
I think – just maybe – this all seems important to me now because it speaks to a future we'll share with Julian once our time in Palo Alto is a distant memory for us all.
I only hope his memories are happy ones.
When I was very young, my family lived in Calgary, Alberta.
My memories of Calgary are fragmented, like little clips of video in no particular order. I remember our house and the surrounding neighborhood, the back alleys that connected us to our friends, the Safeway down the street; I remember hikes with mom, past those crazy magpies on the path to the river; I remember sleepovers at Gramma Julia's house, and how she'd walk us to 7-11 the next day to buy us candy; I remember going to the hospital with my sister so we could both have our tonsils out; I remember the car crash where some guy ran a red and t-boned my parents; I remember watching the delivery guys unload my dad's new radial arm saw, and I remember the Christmas when I got my very own hammer – a real one! - and a bag of nails.
But most of all I remember being happy.
I also remember leaving Calgary, when my family relocated to Regina, Saskatchewan. I remember my aunt & uncle taking my sister and I to the Grey Cup parade while my parents loaded up the truck, and I remember my mom pulling up the sign on the lawn before we pulled away. I don't remember the trek from Calgary to Regina (7+ hours!), or our arrival in town, or even seeing our new house for the first time. All I really remember about that night is my sister and I eating apple sauce, using a moving box as an impromptu table, in a dining room otherwise devoid of furnishings; later we rode around on our tricycles in the vast, unfinished basement.
It was December 4th, 1974. I was three and a half.
Actually, I was 3 years, 7 months and 2 days old.
I know – it seems random. It only stands out for me now because today Julian is exactly 3 years, 7 months and 2 days old. And today we received word that Julian's kidney transplant will take place next week, on Tuesday May 20th, 2008.
No small thing.
In the same way my parents started a new chapter in their life, relocating to a new city where they knew literally no-one, I feel like Stacy and I are about to turn a page in our own story. It's one we've been anticipating for a long time, but now that it's here, I can't help but feel nervous. Once that page is turned, we have no idea what to expect.
Everything seems unknown. And that can be unnerving.
Don't get me wrong, Stacy and I know deep down that the course we're on – dialysis, transplant, and subsequent care – is the best one for Julian. But every now and then we have little pangs of doubt – do we really need to do this? Is there any other way? I mean, does he look sick to you?!
Being at the Ronald MacDonald House has actually been encouraging, because several of the families are on the same path we are. One family in particular has a daughter, younger than Julian, who had a kidney transplant a couple months ago. And she's doing great!
Ultimately, we're all in God's hands. Stacy and I feel distinctly that God has led us to Palo Alto, and has brought Cheryl into our lives as well. I'd love to get some of her thoughts here on the blog, because I know this has been a unique journey for her as well. Maybe this weekend...
Anyway, all of this is stirring in my mind because it occurred to me that Julian will probably remember it. Maybe not all of it, and maybe not in chronological order. But I remember what it was like being his age, seeing the world through three-year-old eyes. And if his memory banks are open for business, then what's going on in our lives right now – the dialysis, the hospital, Cheryl and the surgery – will all be indelibly recorded in his little mind.
I'm not even sure why any of this is important, but somehow it seems like it should be.
Maybe because in a new way, Julian is on this journey with us now. He won't remember his stay in the NICU in Denver when he was born, but he'll remember Palo Alto.
Years from now, we'll haul out the archival mass storage device (future-speak for photo album) and flip through the pages. His face will light up as he remembers the cable cars, the 'Donald' house and the beach at Santa Cruz; sourdough at Fisherman's Wharf, coffee at La Baguette, and the waves at Pacifica.
I think – just maybe – this all seems important to me now because it speaks to a future we'll share with Julian once our time in Palo Alto is a distant memory for us all.
I only hope his memories are happy ones.
05.14.2008 - Test Results
From Julian's COTA Journal.
Check out Julian's new video, a snippet of our trip to Pacifica last weekend.
Cheryl Humble, Julian's kidney donor, had what we hope will be her final test today, which apparently went well. In any case, the Docs running the test had no reason not to proceed with the transplant. So, we've communicated that up to our transplant coordinator (I'm sure the Docs did as well, but just to be sure...), so we hope to hear in the next day or two what the schedule may look like. If all goes as we hope it will, Julian could have his new kidney as early as Monday of next week.
Stay tuned.
Check out Julian's new video, a snippet of our trip to Pacifica last weekend.
Cheryl Humble, Julian's kidney donor, had what we hope will be her final test today, which apparently went well. In any case, the Docs running the test had no reason not to proceed with the transplant. So, we've communicated that up to our transplant coordinator (I'm sure the Docs did as well, but just to be sure...), so we hope to hear in the next day or two what the schedule may look like. If all goes as we hope it will, Julian could have his new kidney as early as Monday of next week.
Stay tuned.
05.13.2008 - All Quiet
From Julian's COTA Journal.
Okay, here's the gist - not a lot of news at present, as we seem to be in a sort of holding pattern. The docs are going to run what will hopefully be their last test prior to the live donor transplant tomorrow afternoon (the test, not the transplant). After that, we hope the Docs will set a date for the transplant itself - hopefully for early next week. Stay tuned.
We had a great time together as a family this past weekend. We spent some time in San Francisco, visiting the cable car museum and driving some insanely steep streets (that's not our clutch, is it?). Seriously, SUV owners must think twice before parking head-in along Taylor or Jones for fear of tipping over. Then down the Pacific Coast Highway to Pacifica for a walk on the pier and a bowl of clam chowder at the Chit-Chat Cafe.
There was a whole lot of other stuff ready to go for this post as well, but it's late and I'm tired. So if I can just manage to not press that button again...
Okay, here's the gist - not a lot of news at present, as we seem to be in a sort of holding pattern. The docs are going to run what will hopefully be their last test prior to the live donor transplant tomorrow afternoon (the test, not the transplant). After that, we hope the Docs will set a date for the transplant itself - hopefully for early next week. Stay tuned.
We had a great time together as a family this past weekend. We spent some time in San Francisco, visiting the cable car museum and driving some insanely steep streets (that's not our clutch, is it?). Seriously, SUV owners must think twice before parking head-in along Taylor or Jones for fear of tipping over. Then down the Pacific Coast Highway to Pacifica for a walk on the pier and a bowl of clam chowder at the Chit-Chat Cafe.
There was a whole lot of other stuff ready to go for this post as well, but it's late and I'm tired. So if I can just manage to not press that button again...
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