Pax the Fighter

pax

Pax. The son to Jared and Nina Fabiny, and twin brother to Pace. He’s your normal rambunctious fun-loving two year old. On Christmas Eve 2013 Pax was diagnosed with a form of childhood cancer called Neuroblastoma. In his tiny belly is a softball size mass, pushing on his little organs. Upon his diagnosis, doctors were very optimistic on his recovery, due to his younger age.

On April 2nd, Pax had his series of scans on and it was determined the tumor is no longer responding to the chemotherapy. The tumor was unchanged from the previous scans and the physicians said that more chemo would not benefit Pax. The surgeon said that as good as Pax looked on the outside, what was going on in his body was very serious and without intervention he would not survive. However, the surgery comes with it’s own risks and the physicians communicated their concerns with the surgery as well. They scheduled his surgery for April 18th (Good Friday).

Though he lost his left kidney and a lot of blood during the surgery, the surgeon was able to remove 100% of the tumor!

After a long journey in the hospital… surgery… ICU… Pax continues to fight and is getting healthier everyday!

On April 29th Pax’s parents posted this heartwarming update on Pax’s Facebook page:
Tomorrow will mark the 14th day in the hospital for Pax. There is a good chance he could get discharged tomorrow… An orthopedic company came this evening to fit him for his leg braces and they think they will have them completed and to the hospital by tomorrow afternoon… Now he is climbing up on the couch and standing up on it to look out the window at the cars as they pass by. This is commonplace for him, but as we watched him tonight we were reminded that 1 week ago today they were extubating him and trying to get him to wake up from the sedatives.

One of our doctors stopped us in the hall tonight and was so happy with his progress. She said Pax was so inspiring to her and praised his attitude and vigor through this entire process as her eyes filled with tears. She said it is patients like him that make her return to work everyday. 
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Team Boom 4 Tripp

tripp

Bill and I met in 2006 and got married in 2007. We were both living in Asheville, NC. I fell head over heals for him and still feel that way almost 6 years later. He is an amazing husband and father.

I was already 30 when we were married, so we wanted to start a family. Now I realize that is not as easy as it sounds. We thought we had it all planned out. And each month was met with huge dissapointments.

So finally we decided to go to a fertility clinic and were told we were perfectly healthy, but since we had been trying for so long, they would help us. I had a pretty horrible pregnancy, was on bedrest, had to walk with a walker and sometimes had to travel by wheelchair. I developed a muscle disorder, then placenta previa, so I had to have a vertical C section. I gave birth to a perfectly health baby boy: Tripp.

A year and 1/2 later, we decided to have another baby. Went back to the same fertilty clinic and got pregnant with a baby girl. Ella Mary Halstead. Her due date was set for Oct 2, 2012;  the same month as Tripp’s accident. But I had a misscarriage just a few months after being pregnant. At that time, it had been the most dramatic thing I had ever personally dealt with. I cried and cried, couldnt sleep, eat, ect. Anyone that has gone through this knows what a nightmare it is. And we learned soon after that, if we didn’t try again immediately, my eggs would be gone. But we were too devastated to try at that point.

On Oct 29, 2012, what would’ve been just weeks after our daughter’s due date, our lives took yet another turn. Tripp was playing on the playground at daycare and a huge limb fell out of a very high tree. It fell on his head and crushed his skull into many pieces. They took him to Winder-Barrow hospital and then flew him to Egleston Childrens hospital in Atlanta. As Bill and I were driving to meet him in Atlanta, I don’t think we spoke 10 words to each other. We were scared and we just prayed. We honestly didn’t know how bad it was.

As soon as we got there, they let us see him. He looked perfect. No blood, no cuts, he looked so peaceful. Then the Dr started telling us how bad it was, and it took me some time to realize they were saying he could die. It was a slice to my heart and soul. So the next few hours after that were a total blur. When I dropped my happy, perfect boy off at daycare that morning, it might of been the last time I saw his smile or his eyes open or him awake. I will never take another day with my baby for granted.

He survived surgery, then the next 24 hours and made it til Friday. Then he took a turn for the worst and they told us to say our goodbyes. That was the worst day of my life. To think he had survived this and then given no hope. But Tripp proved them wrong, he is a fighter and he pulled through and we have never looked back. He spent 5 full months in the hospital. He is at home now and even though he is making babysteps, he is moving forward.

I cherish every moment with him. He is my whole world and I want him to know how much he is loved. I didn’t want this post to be all sad, I wanted everyone to know how important every single day is with your loved ones, hug them, kiss them, let them know how special they are to you. Even if Tripp hadn’t pulled through, I can honestly say there wasn’t one single day of his life that he wasn’t hugged on, kissed on and told “I love you”. He is a very special boy and thank you all for loving him too.

This story is courtesy of TeamBoom4Trip.com and photos of the Halstead family’s official Facebook page.

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Lacey and Christian

christian

From Jamie Grace: A lady named Lillian posted a video of Christian and Lacey singing “Hold Me” on my Facebook a little bit ago. I loved seeing a mom and her precious son sing “Hold Me.” That song is one I wrote when  I really needed to feel God’s love and comfort. Christian, a fighter, has faces health challenges (as a result of a rare birth defect) yet it’s a beautiful reminder of what it means to be held in the arms of God even through life’s storms. You can see the video and read Christian’s story (in his mom Lacey’s words) below.

Christian was born with a very rare form of cleft lip and palate, known as Tessier cleft lip and palate, classifications 3, 4 and 5. There have only been about 50-60 documented cases of this type of cleft. Christian’s birth defect was caused by Amniotic Band Syndrome, but we don’t know what caused the ABS. Christian is very healthy, but he does face some challenges because of his birth defect. The cleft left Christian with a condition known as microphthalmia or “small eyes.” Christian is blind. He also has malformation to his mouth, upper teeth, sinus cavity, skull, and lips. None of this malformation are life threatening or dangerous, but it will require many reconstructive plastic surgeries. Christian eats with a feeding tube because of his birth defect. He does not have a roof to his mouth and his lips don’t work exactly how they should even after a surgery, so it’s very difficult for him to chew, control food in his mouth, and speak. He faces a number of surgeries up into his teens and possibly into adulthood. Although our guesses are just that, guesses, we estimate that he will have at least 20 to 30 surgeries in his lifetime.

Christian’s Video

Christian’s type of cleft is very unique. It is obvious that Christian’s reconstruction of his face, including his palate, eyes, lips, teeth, etc, will require extensive surgeries. It is also apparent that not every reconstructive surgeon will be up to the task of reconstructing such a unique and rare cleft. Finding a doctor who has the experience and knowledge to complete Christian’s repairs and do them well is IMPERATIVE to us and we will not settle for just any doctor because they are near by, or because that’s just who his insurance will pay for.

The last few years have been a struggle when it comes to getting Christian the care that he needs and that we think he deserves. When Christian was four months old, our local children’s hospital made a grave misdiagnosis for Christian. They misdiagnosed him with Craniosynostosis. Craniosynostosis is a childhood craniofacial condition, but not one that Christian had. For many, many reasons, we were very untrusting of the diagnosis that we received.

After much thought and prayer, our family decided that the best course of action for Christian would be to seek a plastic reconstructive surgeon outside of the state. We found that there just wasn’t a surgeon in state who could handle Christian’s complex issues. We were not comfortable allowing a surgeon to perform operations on him who we didn’t feel was competent to handle his case, or who we didn’t trust. In that search, we visited Shriner’s in Cincinnati, Nationwide Children’s Hospital in Columbus, and also Lebonheur Children’s Hospital in Chattanooga (at the request of Christian’s insurance company). We also did research and spoke with many, many other hospitals.

After our visit with Nationwide Children’s, my husband and I decided to pursue getting Christian’s surgeries done there. The surgeons were highly skilled, the staff was wonderful and friendly, and we felt comfortable there. For a year and a half we fought the insurance company.

Christian’s insurance company has a policy of not covering out of state medical care except where there is an emergency and the insured happens to be out of state when it happens (this does not apply to us) or when there are no doctors in the state who can perform the required care that the patient needs. We spent a year and a half trying to convince Christian’s insurance company that the later except pertained to our case. We were completely unsuccessful. During this time we became close friends with a family who lived in Indianapolis and had decided to visit them in August of this year. Marisa, who is now officially an honorary “Mimi” to our boys, asked if we would be interested in visit Riley Children’s Hospital while we were there. We agreed. We were already going to be close, and we also know a family whose daughter has had all of her Tessier cleft repairs done at Riley, so we were looking forward to the visit, but to be honest, we had little hope of anything ever coming of it after the fight we had already had for the past year and half.

We loved the hospital and the staff there as well, they were as kind and good to us as they could be. The surgeon was so helpful in answering all of our questions, asked many questions himself to get to know us and Christian, we got to understand his skill and find out that he has the skill and expertise to handle Christian’s case and we knew immediately that he was a kind man. But again, we didn’t have much hope that anything would work out, and didn’t even really pursue it. Our rationale was, “If his insurance company won’t approve one hospital, why would they approve a different hospital?”

On October 5th, I went in front of a judge to the final appeal hearing with Christian’s insurance company. This was our last shot. I was to appear in front of a judge, Christian’s insurance company being represented by counsel, to plead our case for the final time. Eight days later, we received our answer in the mail, The judge still said “no.” We were disheartened, disappointed, and unsure where to do next. Two days later, we received a call from Riley Children’s Hospital. Christian’s insurance company had agreed to pay for Christian’s surgeries at Riley Children’s Hospital! We didn’t know how, or why, or who, but we didn’t care at that moment. All we could do was cheer and scream and cry!!!!!

Christian’s first surgery with Riley will be November 26th, 2013. He will be undergoing a procedure to have his palate partially closed. His palate has to be closed in stages because the defect is so large, so his hard palate will be closed during this procedure. The surgery is estimated to last about 3 hours, and he will be in the hospital for about 2 days. Once Christian is discharged from the hospital, his doctor has recommended to us to stay near the hospital for 2 to 3 weeks. If problems arise, he would like us to be near the hospital so we can get Christian to his doctor quickly.

You can also follow Lacey’s blog for more updates and info.www.christianbuchanan.blogspot.com

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