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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Praying for Mercy

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In 2011 Mercy was diagnosed with OMS, which stands for Opsoclonus Myoclonus Syndrome affecting only 1 in 10 million children.  Her illness includes permanent damage to the cerebellum of the brain.  She is unable to walk unassisted, has a constant left foot tremor, and daily seizures. The disease is an autoimmune deficiency.  Therefore, Mercy has undergone a trial of various immune suppressant treatments, none of which have been successful.

There have been quite a few changes in Mercy’s body since last summer of 2012 when we finally made the decision to go against what the doctors strongly suggested and begin her medication weaning process in spite of all the risks.  It took us many months of prayer and seeking medical counsel with Mercy’s specialists before coming to this very difficult and important decision.  Mercy’s top neurologist explained to us that taking Mercy off her meds could potentially be life threatening.  However, we felt that keeping her on the meds were also just as high of a risk not just physically but mentally, emotionally, and psychologically.  The entire family was suffering right along side of Mercy day after day as her symptoms seemed to worsen no matter how high her doses of medications increased.

The side effects of Mercy’s medicines became so unbearable to the point where the doctor wanted to increase Mercy’s med doses yet again at which Camie (Mercy’s mom) broke down in the office and began to cry and explain how truly difficult it has been.  Some of the more severe side effects included rapid weight gain, “moon face”, insomnia, high blood pressure, uncontrollable temper tantrums, emotional instability and hair loss just to name a few.  In addition, Mercy continued to have daily seizures as well as very limited and challenging diet restrictions.  All of this seemed to be more than our family could cope with at times, especially Camie as she is Mercy’s primary care giver during any given workday.

Just before the summer of 2012, we began weaning Mercy off of the steroids.  In addition, after Mercy endured 4 rounds of unsuccessful chemotherapy trials over the course of many months, we finally decided to discontinue her chemotherapy treatments in August. We felt a mixture of relief and anxiety all at the same time, as we had no choice but to put our trust in God for His divine wisdom and, of course, for Mercy’s health and life.

The weaning process seemed to be going rather well until the night before her 7th birthday (July 21st) when she had 9 seizures in about a 3-hour period of time.  Then again in mid-October, Mercy had an 80-minute, full-body seizure that nearly took her life and left her in the ICU at Loma Linda Children’s Hospital, CA for two days.  The days following that seizure were unknown as the doctors thought that Mercy may have further brain damage due to the severity and length of her seizing.  Not only were the doctors surprised that she survived such a physical tragedy, but they were equally amazed that she was not a “vegetable” as a result.  With every passing day after that seizure, Mercy’s physical and mental abilities grew stronger and stronger.  She was even able to return to school only one week later.  This was amazing and miraculous to say the least!!!

The week before Christmas 2012, Mercy was completely weaned from the steroids. This, in itself, was an answer to prayer as we had told the Lord, at the beginning of that year, that our desire was to have Mercy free of steroids by Christmas Day.  It was a celebration of two miracles:  Jesus’ birth AND another answer to our prayers.  It was a wonderful time being with our families in CA.

Since Christmas 2012, Mercy has been weaned from all the other prescription meds that were counteracting the side effects of the steroids.  Currently, the only prescription med that she is taking is a newly prescribed anti-seizure drug that has very minimal side effects. Unfortunately, it doesn’t seem to be working as Mercy has been having (almost) nightly grand mal seizures in her sleep for a few weeks now.     

In spite of it all, we are so thankful to the Lord for all His many provisions. He has given us emotional provisions with His peace that comforts like none other. He has given us spiritual provisions as people continually tell us they are praying and believing with us for a complete miracle in Mercy.  He has given us physical provisions as people have donated their time, efforts, and resources to ease the burden of caring for a sick child.  And He has given us financial provisions through so many of you who have participated in helping raise money for Mercy’s ongoing medical expenses.

[As Mercy’s family continues on their journey, they shared this update with friends & family in April.]

“Our fragile Mercy girl has been having some pretty bad bouts of insomnia this past week accompanied by grand mal seizures late at night and early in the morning, interrupting the little sleep that her body is trying to get. Her seizing has been getting more and more frequent than usual. In the last 24 hours alone, she has had 4 seizures (1 full body convulsive last night, one facial focal leaving her unable to talk afterwards, another full body convulsive this morning, and one silent at church this morning.) Please pray for her body to find relief from the seizing and nightly insomnia.”

We continue on this journey taking only 1 day at a time and sometimes taking only 1 hour at a time.  We continue to believe God everyday for Mercy’s complete healing.  We continue to trust in our Lord for His perfect plan to be fulfilled in Mercy’s life.  Philippians 1:6  says, “Being confident of this, that He who began a good work in you will carry it on to completions until the day of Christ Jesus.”  Amen!

Mercy’s Website

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Danni Rae

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Where do I start? Well I guess on January 26 1996, the minute they lay my beautiful new baby on my stomach. I was so in aww of her and happy to see my beautiful baby girl. I also was concerned that something might be wrong with my baby but nothing was said to me by the nurses. My little girl looked to have downs to me. I put that in the back of my head and went on with the joy of being a mommy to such a wonderful little girl. She was so good and so beautiful. 6 months had gone by and a stranger came up to me at a game and asked how long I had known that my baby had Downs. My life was shaken at that very moment and was forever changed. But wait there is a twist in this story that is so amazing.

So now start the months and years of testing and waiting. One test after another after another just to be told each time the results were negative. One would think this would be great news but it was always followed by but there is something going on. They ruled out downs but not mosaics. They ran so many tests that my baby girl at one year old would just put out her arm for them to draw blood without thinking about it.

I had two other children and had been working with children for 12 years at this point and knew that my baby was not physically and mentally developing like she should be. When she was born she was 6lbs and at a year old only 14lbs. She would still lay in my arms like a baby and her eye contact was not like it should be. I told my Dr. many time before she was a year old but he was never concerned. I contacted early on when she was one year old and had her tested. She showed delays and they began to work with her. As time passed they decided that it was possible that she may not speak. She came up with her own way to communicate with us through her own signs early on then got her a speaking board.

At 18 months old I convinced the Dr. that her eyes needed to be checked and sure enough she was legally blind in her left eye and close to it in her right eye. Glasses went on and she began to thrive. By 3 years old she was able to speak one to two word sentences. Still nowhere near where she should be but the happiest little girl ever.

At this time I am getting very discouraged with the Drs. not finding any other reason as they are still looking. Why is she not growing and why the large delays. When she turns 2.5 we finally go to a neurologist and do a few tests. The waiting begins and finally some answers. She has a mild case of cerebral Palsy. I excepted that answer and at least had  something to go on now.

Now we are entering preschool. Much smaller then all the other children, only weighing 16lbs but very confident and happy. She started to show signs of other delays so we had her tested more. This time I was told by the specialist that she would be lucky if she gets past the 6th grade. Yes his exact words oh and let me add that he also said the one thing she has going for her is her confidence. WELL let me tell you I took those words and threw them right out. Wrote him a nice letter stating how sorry I was that her felt that way about my daughter and that I had a promise from God and I was standing on that.

She spent two years in Kindergarten and has had a lot of struggles academically. When she was 9 years old we had a few more things thrown her way. First there was the diagnosis of Dyslexia and then half way through the year she started some strange behaviors. She started to make some odd noises and strange movements. Just wasn’t sure what was going on. Then one night I received a call from both my sister and my mom telling me to turn on PBS and watch a show call “I have Tourette but Tourette doesn’t have me” I was watching my little girl on that show. As tears streamed down my face seeing just how bad it could get fear set in again… why is this happening to her?

As a parent the hardest part was having your outgoing happy little girl start to go inside herself and become depressed. Kids were not used to her twitches and she started to lose friends. I started her in therapy and on medication that lessoned the ticks but they weren’t gone. We played around with foods and went all natural and that also helped. Nothing really took away the ticks but they were not as noticeable. It was always hard to know what would set off the next tick and how to handle it.

She struggles with having friends because at a young age she was shown how hard kids can be on you and finds it hard to trust. For me as a parent seeing a child struggle is very hard but even harder is to listen to your child night after night, year after year cry over hurt feelings and beg to just not have to go to school.. I would tell her all the time to lean on God because He has Great plans for her. What those plans are, we do not know for sure but He uses her in so many ways now.His light shines though her and she is so in love with God.

Her struggles have only made her stronger and that much more of a great person. She is now going to graduate in 2015 with a diploma. Don’t get me wrong she has had a lot of struggles but she did it. Life is hard but God is Good All the Time.

The picture above is of My Beautiful daughter and myself going to her Junior Prom

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Lacey and Christian

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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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