As 2012 comes to a close, we want to take a moment to thank all who have supported and loved us through this very interesting year. 2012 has really been a year of ups and downs...
Ups in the most important things for us - our children, Christian's disease breakthrough, the opportunity to be on the transplant list and for all of the friends and family that have poured out their love and support for us in our fundraiser.
Downs in the challenges we and some friends we have faced. For our family, the loss of our grandmother and employment back in the summer. For our friends, some very close and difficult loss of loved ones.
2013 opens another chapter for us and we are filled with optimism on all fronts. Our prayers are that each of you who visit our page can look into 2013 with hope and optimism and lifted by the love of friends and family as we can.
Update: Alexander passed on Friday 9/14. Please see the Prayers For Alexander facebook page for details. Alexander will be laid to rest on Monday, 9/17. We continue in our prayers and thoughts for the Bradberry family. - Kiki's Dad
To all our friends... for the past few days we have been praying with and offering some long distance support to a young family in Mississippi whose son is battling HLHS... a very rare heart disease. Little Alexander has fought a Good fight, but unfortunately, today, will be removed from life support.
We have been in touch with the family and are able to arrange for Christian's Conquest to take pass-through donations for the family as many have requested.
All proceeds through this special donation button will be dedicated to the Alexander Cruz Bradberry Support fund.
All proceeds directed to Alexander Cruz Bradberry Support Fund
Thank you!
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Thanks to all who have expressed faith and prayers for the Bradberry's during this time. The family is genuinely touched by the outpouring of love and support.
Well this is kind of surreal... 7 years ago to the day we were evacuating Katrina and, as we've posted here, that was the beginning of a very, very rough time for Christian. Needless to say we are in a much better position this time around - from both a medical and an experience point of view.
To all of our friends and family, and even some new ones who made it to the fundraiser yesterday, we are so, incredibly blessed. The event turnout was great, it looked like everyone was having a fantastic time and we had a very successful fundraiser.
To all who helped, donated and visited - THANK YOU!
Season ticket winner: Ken Brown and Son's from New Orleans! We will touch base soon to arrange delivery of the tickets. This looks to be a great season for our Tigers!!!
I'll have keep this short as we will be heading out to Houston at some point today. Look for updates of pictures and info from the event in the next few days.
It looks like the weather will be great and we have had a wonderful response. We really look forward to seeing many of our friends and making some new ones.
For those not able to make it, check back here in the morning as we are working on possibly having an internet video feed live from the event. We will test in the morning and if all goes well there will be a link here on the front page.
It's been a bit of an emotional roller coaster here these last few days. The Kidney Kickoff is truly looking to be a fun time and wonderful event, but boy have we been rolling through some old, tough memories as we prepare. We are so very blessed to have a wonderful family and group of friends. You all are the best and truly the wind beneath our wings.
Well right on schedule... when things are trending well for quite some time there is always the hiccup that gets thrown in the mix to keep us on our toes.
This has been a really fascinating few weeks in Christian's care and physically things have been running rather smoothly.
Until Saturday night that is. We had our Friday "off day" from dialysis as is usual, meaning that his last treatment was Thursday evening. There was lot of family stuff going on Saturday so we planned to dialyze in the evening. That evening we set up the machine and then attempted access and had trouble with his "B" port. No problem we'll wait a few hours and try for a midnight treatment.
Midnight comes, we try again and have to give it up after an hour of access attempts. Now we're getting worried. Christian and Aida were heading to Houston Sunday for his Soliris infusion and if we could not get access early Sunday then we were going to have to try to get a treatment scheduled in Houston for Monday. That would be nearly 3 1/2 days without a treatment and he was really getting full of fluid.
Thank goodness on the third or fourth attempt Sunday morning we were able to get the "B" port and got a full 4 hour session in before they left.
However, it reminds me that we get complacent when things are going good. Christian really should have 3 access ports and when we lost one earlier this year we have not made it a priority to get it re-created.
Well the power of the internet is an amazing thing. Recently we received several inquiries from potential "living donors" who have asked to be screened as a potential match for Christian. These are complete strangers who have a desire to give of themselves so as to better our son Christian's life. Words cannot describe the emotions that, possibly, someone may match and be a willing donor.
There are many, many factors in possibly getting from here (dialysis) to there (healthy donated kidney) and we have been well coached throughout the process from our support team at Texas Children's and home. Whatever the outcomes, we are grateful.
A quick update on the fundraiser - things have gotten off to a great start. We have had a wonderful response and have received many offers of help for auction items, parade of raffle items and general help. Please do not hesitate to contact Michael Billingsley direct or myself if you have any questions. I'll update the Kidney Kickoff page as Michael and the crew continue to put things together.
Save the Date! Come join us August 26th for the Christian's Conquest Kidney Kickoff being held on the shores of beautiful Lake Pontchartrain at the Pontchartrain Yacht Club.
Raising funds and celebrating the incredible news of Christian's placement on the kidney transplant list, this fundraising event will feature a silent auction of exciting and useful items and services from local businesses as well as a Celebrity Raffle for a pair of 2012 LSU Season tickets in Sec 304 of Tiger Stadium!
In addition to the main event rooms, the fundraiser is being built as a family affair. For the Kickoff Kid's, there is a park located directly across the street for family fun and activities like face painting will be available.
Food, a cash bar and musical entertainment will be provided.
Event tickets are $40 Adults, $10 Teens (13-18) and kids 12 and under free.
For a quick catch-up on Christian's 17 year medical journey, see the following two videos:
Well, what a JOY it is to finally announce that Christian is now officially and formally approved for transplant and ON THE LIST for a new kidney!
What an unbelievable feeling this is for our family. Certainly this is the beginning of a new phase for Christian and us and we know it comes with it's own new set of problems and issues, but man it sure is hard to hold down the euphoria around the Billingsley household right now.
At this point there are two options: 1) We are on the list for a donated cadaver kidney, or 2) We are approved for a "Living Unrelated" donor kidney.
Please keep Christian in your prayers that a potential living donor emerges. There are several benefits to a living unrelated donor, and in this day and age we are seeing miracles happen all over the place along these lines.
FYI, there are 3 criteria for a "Living Unrelated" donor:
1- They must not be related to our immediate family (due to the suspected genetic origin of his disease),
2- They must be type B or O blood, either positive or negative,
3- They must be in general good health (no high blood pressure, other risks, etc)
I told Christian he wants BO but I don't think he got the joke at first. Heh, anyway, we'll have several more announcements in the coming weeks, but please begin to pass the word around.
We found out today that Christian has cleared the Medical Review Board at Texas Children's Hospital and is getting close to full approval to go on the transplant list.
There are several logistical items to work out and a post-transplant treatment protocol that Dr S needs to complete before he can officially be "on the list".
Things that need to be worked out include emergency transportation to TCH, arrangements for the family for the immediate surgery, arrangements for a 2-3 month stay in Houston following surgery, follow-up visits, etc. And that is before we get to anything having to do with his treatment protocol (ie, med schedules, testing schedules, etc).
Things look like they will start moving quickly now until formal approval and then.....we wait.
Already having been in end stage renal disease for many years, we believe that Christian could be rather high up on the transplant list once he's there. What an exciting time.
Well today is a pretty special day. Today marks the 6 month anniversary that Christian has been on his new miracle drug, Soliris.
We have been going to Houston every other week for the infusions and have experienced no setbacks and no side-effects.
Workups for to be placed on the transplant list are ongoing and we expect an announcement in the coming weeks on that front. This truly is a miracle time in the lifelong struggle Christian has fought against this devastating disease.
To look back and see where we were vs where we are today - on the cusp of a transplant and all of the benefits Christian can realize by getting it at this time - it is pretty amazing.
Well a big THANK YOU to all who helped make the Zumba fundraiser a success. We had a great time and raised over $1,500.00. Special thanks to Ginger Morel for the hard work and initiative to get things rolling.
Hello everyone! We have finally released our first video, chronicling the 17 years Christian has fought hard against this terrible disease.
I actually started this video in February of 2008 but could get no further than 104 seconds into the song. I think you'll see that truly this video was not capable of being finished until now... with the amazing developments over the last few years.
Please enjoy the song and enjoy the video.
I am hoping to release a separate video to celebrate Rare Disease Day this Wednesday! The HUS community is working to post videos from all over on Wednesday and I sure hope to finish our entry in time.
Please talk up Rare Disease day to your friends and family - raising awareness of those struggling with lifelong disease and bringing hope that they, like our son, can find comfort and cures. That is the essence of the global highlighting of Rare Disease Day.
Lastly, Christian, Aida and I will be traveling to Connecticut to the home office of Alexion Pharmaceuticals to speak on Wednesday at Rare Disease Day events. Look for some updates later this week on our travels!
Christian's life story was featured in a local newscast on Tuesday Feb 7th. Following is the story and a link to it on the CBS affiliate WWL TV website.
Many thanks to all for the wonderful comments and expressions of support we have received. You all have truly been a blessing to us and have strengthened us and carried us through the years.
'Just keep him alive until medical science catches up'
Doug Mouton / Northshore Bureau Chief
ABITA SPRINGS, La. -- A medical breakthrough is making a normal life possible for a Northshore teenage with a rare disease. Seventeen-year-old Christian Billingsley has Atypical Hemolytic-Uremic Syndrome, which is usually referred to as aHUS.
For now, Christian's young life is dominated by kidney dialysis. An in-home dialysis unit sits permanently in his bedroom. Christian is hooked to the unit six days a week, for three to four hours at a sitting.
"It's painful getting on, and sometimes, because of the way fluid comes off your body I can get cramps while I'm on it," Christian Billingsley said. "That can be painful too."
For a high school sophomore, daily dialysis makes having a normal social life virtually impossible. Often, Christian gets home from school, starts homework, gets on the dialysis machine, and by the time he's finished with dialysis, it's time for bed. As inconvenient as it is, that dialysis machine is literally keeping him alive.
The Family Journey
Christian is now the oldest of Gene and Aida Billingsley's three children, but before 14-year-old Gabrielle and 8-year-old Brandon were born, Christian was already suffering effects from his disease.
The family journey began when little Christian was only three months old, with a huge bout of projectile vomiting. "And he broke out in little bruises all over his body called petechiae," Gene Billingsley said, "it literally looks like a rash over the whole body."
By the next day, the Billingsleys had a diagnosis, and their fight against aHUS had begun. The disease causes clotting problems and often attacks the kidneys. And the Billingsleys quickley learned of the recurring nature of aHUS.
"We'd be in the hospital two weeks, we'd come out, we'd be home a week," Gene Billingsley said. "It'd come back."
Eight months after the initial diagnosis, Christian's kidneys went into failure, and he was put on dialysis for the first time.
When Christian was two, Gene Billingsley donated one of his kidneys to his son, with the hope that the new kidney would cure Christian's problems. Gene Billingsley said, they also had realistic expectations, and knew that even if the kidney didn't help in the long term, it would benefit Christian's development short term. And it did, Gene and Aida said. Their goal with their young son was simple: keep him alive and do anything they can to keep him as healthy as possible, until medical science caught up with their son's disease.
The replacement kidney lasted just six months before failing.
"So we were completely out of the option of another transplant," Aida Billingsley said. "He was on dialysis indefinitely."
Christian was surviving, but on a medical rollercoaster.
"We would do ok for a year or so," Aida Billingsley continued, "then we would have some complication, something big happened, and we'd be in the hospital for months at a time."
The lowest point came not long after Katrina, in late 2005, when Christian was near death in a Memphis hospital.
"He was massively infected," Gene Billingsley said. "All his organs were shutting down."
"The sicker he got, the less he wanted to fight. He was very discouraged, I guess," Aida Billingsley recalled. "It just got to the point where he wasn't interested in doing what he needed to do."
Christian survived that near death episode, and it wasn't the only one. "Five times where the doctors have said, it's touch and go right now," Gene Billingsley added.
The Breakthrough
Then in September 2011, the Billingsleys got the medical breakthrough for which they had been waiting. The FDA approved a drug called Soliris, and medical science had caught up.
"We did it," Gene Billingsley said. "This drug takes away all the issues that come up with HUS."
Since getting on the drug, Christian said he feels, "Amazingly different."
He's healthier now than at any point in his live, and the Billingsleys expect soon, possibly within the next month or two, that Christian will be able to get back on the kidney transplant list.
"It would be a miracle in Christian's life, absolutely," Aida Billingsley said.
The possibility of getting off daily dialysis means Christian can now consider college choices all over the country.
"I can go anywhere," Christian Billingsley said. "It's like the whole country, like I had a couple little dots on it, and now it's all lit up."
For the first time in his life, he said, he feels almost normal. "It's amazing," Christian Billingsley said.
"I never doubted we'd be in this spot," Gene Billingsley said. "I just had it put on my heart, in the first couple months that he's going to be all right."
Six years ago in Memphis, it didn't look like it, but now, it does.
That is the theme for the 5th Annual Global Awareness campaign highlighting Rare Disease Day.
Christian’s Conquest will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.
Please visit www.rarediseaseday.us and follow us here at Christian's Conquest this month as we bring news of not only our journey with rare disease but others whose lives have impacted thousands through a series of announcements and videos.
And here's the first: A Rare One, recorded for The Foundation for Children with Atypical HUS by the Tricky Britches, enjoy!
Alot of emotion with this post today... Christian has turned 17. I can remember vividly Dr Phillips at NOCH telling us there was a real chance he would not make it to 5. And the several more times when not making it was way more probable than making it.
Yet here we are. Faith and miracles worked through the vessels of men, women and science have Christian on the doorstep of Life v2.0. We have a soaring heart of joy for our son and a heavy heart of resolve for those we have known intimately along the way whose child's birthdays are celebrated in spirit only.
It was family time today. A good day. A good day, indeed.
Next up: Mom and Christian will be leaving SuperBowl Sunday for the next Houston trip. A 7:30am ultrasound workup is scheduled, followed by consultation and the bi-monthly Soliris infusion.
Also, look for an exciting announcement early next week as Christian's Conquest begins promotion of Rare Disease Day which is slated for Feb 29th this year! Check back soon and please get involved with us in this grass roots awareness campaign.
So Christian has been to Houston twice in the past 10 days - Tuesday through Saturday last week and then yesterday he and I flew over for a one day trip.
Stylin' with the Chrysler 200 that saved the day!
The news coming out so far has been positive. There was a flurry of tests performed last week and one which was "delayed" until yesterday because we needed some additional time to prepare for it.
One concern going in was that, due to his previous transplant in 1998, Christian's body might have developed scar tissue in the area where a new kidney would be placed. This could have been a minor issue to deal with during surgery or it could have been bad enough to prevent a new transplant. The good news is that he is in good condition internally for a new kidney.
Christian pulls a "you can't see me" move when Dad tries
to frame his pic with Minnie and Cinderella!
The other concern was bladder function, since his has been unused for so many years. That is the test that got delayed and when we completed it yesterday, the news was great - his bladder is small (an expected result), but looks good and functioned well in the test. Post-transplant, it would be expected to grow to normal function once it starts getting used again.
From there we visited with our child life coordinator and discussed all of the things a transplant means; the amount of time in the hospital, the couple months post-transplant stay in Houston (we'll be outpatients 4 days a week as they draw labs, follow up and tweak his daily anti-rejection drug levels), the critical-ness of strong routines on taking daily meds, what happens if that schedule is not followed, etc. It's alot of information for a teenager to take in, but this will be his responsibility as he moves from high school into college and young adulthood.
iPad as a critical medical device
And so normally things move like clockwork at TCH as this is a well-coordinated schedule and their trains pretty much run on time there. Thus we rush through the different clinic visits back and forth between two medical towers.... until the last one of the day. Reviewing the urology results was scheduled to start at 4pm. We had been told it would take 30-45 minutes. Our flight back to New Orleans was at 6:45pm. Everything's cool.
Well we arrived at 3:50, got checked in and then waited. And waited. Now I should make a side note here that, while Dr visits are notorious for the long patient waits, this is NOT the case at Texas Children's with these types of workups for surgeries. Pretty much everyone there is on the money with scheduling because their time is at a premium - and we have come to understand that with a hospital so big, things need to move quickly and on time for it to work. So while I would anticipate a long wait usually, it was not so in this case.
But it wasn't until 5:09 that we saw the first Resident Dr.and then 5:15 for the specialist. It did go quickly and we concluded at 5:22. It was a race to the airport at that point - one in which my old skills of controlled professional driving, cell phone google maps with real-time Traffic updates and our stylin Chrysler 200 were put to the test. We pulled into Enterprise at Hobby airport at 6:05, got dropped off by the shuttle at 6:22, breezed through TSA (seriously!) and lucked into the boarding gate being the first one in the concourse... we walked up a they finished calling all of the pre-boards to get on the plane. Whew!
In the end, everything worked out just fine...
Thanks to all at TCH yesterday - what an incredibly caring and professional group!
Well there is some sad, yet, inspiring news coming from 30 miles down the road. A young boy that we have followed, Tripp Roth, passed away over the weekend.
One of the things I think is critical for Christian's Conquest is to always remind ourselves that awareness for children with rare disease is part of our mission. Tripp and Courtney's strength and love poured out to all on the internet in a way that touched people deeply... it is what we, as parents of chronically ill children, draw from when wondering "why?".
A beautiful message posted to Tripp's blog illuminates this perfectly:
A sweet lady wrote this on the "Prayers for Tripp" Facebook page.
It made my heart smile.
While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"
Thank you perfect wonderful sweet strangers... for loving my child.
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That is a tough message to get our heads around, but it is truly the message of hope and calling we realize when we open our hearts, ask God and listen when He answers.
I also remember that God never asks us to do something that He himself has not done. Even to the loss of our children.
Thank you, Jesus.
Godspeed, Tripp, and prayers for Courtney and family.
Aida and Christian left today to head to Houston for the first part of the workups for his transplant. It is hard to believe that things are really moving towards that day... what was just a pie in the sky dream/hope/prayer for the past 14 years is now becoming reality. Words fall short of describing the feelings we have today.
We got a bit of a break in scheduling and rather than having to go over on the 8th, they delayed Christian's Soliris infusion from Monday until Wednesday - so it'll be Wed: infusion and dialysis, Thurs: meetings and Dr visits, Fri: meetings and dialysis, Saturday: return home.
We will post next week with feedback on the results of the next few days. Stay tuned!
Please help spread the word on 2K for Life! - this is a grass-roots, person to person, personal campaign and it will take all of our friends and friends of friends out there to make the goal. Thanks to those who have subscribed to the $10 per month donation schedule already!
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