Cristian's Story: Surviving Neurofibromatosis updates...

When  your child is  ill, the whole family feels the pain, particularly the parents. Regardless of the condition, the stress and pain families suffer!9-18-14 Dixiana got taught by a nurse how to start to give shots 3 x daily on Cristian for a few weeks  for his growth hormones and if he has no side affects such as diarrhea and stomach pain that can lead to gall stones! If he can tolerate with success these shots he will then get one once a month....  This now is the first of many times he will miss school for doctor visits! Dixiana says it's hard sit by your child  bedside  him in the MRI visit knowing what the doctors are  looking for—a brain tumor— which was found! “Dixiana tried her best to digest t'her son NF1 diagnosis, take it all in!,” she said. “Being thrown into a situation where all I could do was sit by and watch as my precious child changed from a healthy, normal kid, to sick,  child with so many tests and doctors visits v it's difficult!Dixiana  said it was hard  when she began giving Cristian stop growth hormone suppressant injections for his condition. Every eight hours for a few weeks, i have to poke my 6 year-old with a needle full of a painful push of medication that burned going in. No one else did the shots, just Me , i cry after doing it : injecting Cristian as he slept, waking him up late at night, and then giving with another shot in the morning n then in the afternoon n repeat the next day.

“Dixiana says felt like I was torturing him, and no one could relieve me from the pain I had to cause my own child,” Dixiana said. “Its agonizing..Dixiana and the Cabral family biggest challenge is dealing with the anxiety about what’s coming next... To be continued 

It’s Never Too Late"

It’s Never Too Late"

Let me introduce you to Diana.Diana is a twenty three years old with a loving husband Daniel, three kids and shes a stay at home mom but little do people know being a mom is one of the hardest job. Daniel works 3am to 6pm his job keeps him busy and slightly stressed most of the time. Diana lives in a fairly nice, modern home, in a ok neighborhood. With two cars in the garage (along with a car payment), and insurance an few other responsabilities. Diana is not exactly at peace with this situation of never having enough time. To put it more bluntly, Diana sometimes daydreams about freezing time because its stressing to not even have time to sit and breath  everyday she aleady knows what needs to be done the next day and so on this  is leading to consequenses upon herself and her family. Let’s just say that Diana's a little stressed.
But it wasn’t always this way…
Let’s go back in time to when Diana was  in middle school and ready to conquer the world. This was a time in Diana’s life that the responsabilities had not yet had a chance to pile up and the only one she had to take care of was herself. She had little stress and a lot of passion behind her dreams of having an amazing career and an even more amazing family to share it with. Diana was in a place I like to call ‘Pre-Paralysis’. A place where she had yet to become paralyzed by the pressures of day-to-day life. A time when the weight on her shoulders had barley even made itself noticeable.
When Diana met Daniel
Diana was blessed with an amazing boyfriend, Daniel. Diana met Daniel in New york on a summer vacation and fell in love faster than a person can blink. There was no doubt in their minds that they were meant for each other, each one completing the missing half of the other. Though they knew marriage was not an easy road, they had no doubt it was the necessary next step. Both Diana and Daniel loved children so talk of kids was an exciting regular conversation. Diana just knew her life was going to be even more amazing than she had imagined. The thought of taking on the challenges of life, side-by-side with the men she loved, was enough to give her goosebumps.
Before the wedding came came, Diana and Daniel frantically struggled for an apartment they both lived with their parents then with Diana's sister for a few yearrs. Diana pushed Daniel get their own place. They settled on a place that was small, but sufficient. While they were boyfriend and girlfriend their imaginations began ran wild with thoughts of what it will be like to live on their own as a couple, with no one to stop them from pursuing their passionate dreams. Diana squeezed Daniels’s hand to confirm their connection as they silently envisioned their future.
Making bad decisions, one day at a time.
One of the first things Diana did was plan a baby. They had needed to take that next step sooner or later, because Dianas parents were against their relationship. Blinded by the excitement of a baby, Diana convinced herself that this was a need. A month later,Diana seen how Daniel felt this unfamiliar pressure on his shoulders. Not knowing what it was, he disregarded it and quickly forgot about its existence. But maybe being parents so young was not the best idea..

IT’S A BOY!!!
Taking that natural next step, Diana and Daniel had a baby Boy.So excited and happier than ever, they both spread the news as if it were the cure for cancer. Daniel never thought he could feel a joy greater than what he felt when he met Diana, but holding his little blessing in his arms for the very first time sent a sensation through his body like he had never felt before. This was his son, his child. Daniel  looked over at Diana and they shared a short silence, communicating a new kind of connection. They were no longer just a husband and wife, but a mother and father to this beautiful little blessing. A year after came the next blessing planned only by Diana another boy!
The Daily Grind
Let’s fast forward a few years. Daniel been working as a truck driver.Great at what he does, Daniel made a good living making vacations and buying new things for the apartment. The problem was that he had to put in many hours a week to do so and the work was  exhausting  with his original pre-paralysis dreams for success in another job where he can work with a better salary for truck driving and paid vacations and paid over time. When he’d come home in the evenings, Diana  would be exhausted from taking care of their, now, 2 kids as well as making sure dinner was waiting for Daniel at the end of her long day. Their enthusiastic relationship had been diluted by this daily grind. Daniel was always tired and hardly had time spend with Diana and his kids.
The weekends were barely any better. Daniel sat in his most Saturday morning, writing check after check to cover all their monthly bills or Running errands for what was needed for the house or kids.  when I mentioned that first sensation of shoulder weight? Well, Diana and Daniel  now had a whole pile of bricks to deal with.
Somethings got to give!
Diana n Daniel talked about stress in life, because that the level of stress both were living  was literally going to eating away of their insides. Daniel and Diana talked about making some changes. Both completely agreed that they made a wrong turn somewhere early on and that for their own health and happiness they needed to find their way back to sanity.
“What happened?” Daniel asked in the tone of a statement. “I mean, how did we get here in the first place?”
“All I know is that we went from white to black with so many shades of gray that we never realized the tone of our life had changed.”
Diana smiled.
That night, daniel and Diana slept better than they had in years. Both at peace with their agreement for drastic change, they felt the shoulder weight lighten, even if only for a moment.
Undoing The Damage
Daniel and Diana are now learning from experience that one positive action leads to more of the same. Each step forward strengthens their stride and reinforces their foundation.
It’s not our location, but our heading that matters most.
People often talk about where they are in life, but I find that it’s where we’re going that is most important. Time is a relentless taskmaster who never listens to reason and just because we’ve made it to a positive life doesn’t mean that tomorrow it can't fall apart. Even more importantly, for those who find themselves in a pit of despair, everything feeling like a failure, I encourage you to focus on your direction, not your current place on the map.
That’s what’s so great about life! We can make our own choices and choose to live the life of greatest fulfillment. We ALL make mistakes and have to deal with the consequences, but that doesn’t mean we can’t, AT ANY TIME, decide to  make better choices for ourselves toward a more positive future. Stop focusing on the mistakes you’ve made and start planning for the future you’ve always imagined. Stop listening to the voice that says that you can’t and start chanting the battle cry for a better future. Stop reacting to life and start challenging yourself to push for greater forward progress. You can’t undo the past, but the present and the future, they are shapeless objects, waiting for your hands to mold them into the life of your choosing.

My son Cristian's story: Surviving Neurofibromatosis part 2

Christians new results Cristian started therapy seeing a psychiatrist  April 4, 2014 he as seen her so far 3x talking about his feelings towards his condition having NF1. Psychiatrist prescribed ADHD pills for him to do better jn school Dixiana started giving it to him August 8, 2014 so far pills gave him no result still Dixiana giving it time to see if things change since Cristian  as NF1 not everything works same as it would on a regular child may need a higher dose doctors say they may not even know side affects these pills can cause on a child with his condition. Dixianas  just left to observe him routinely after each pill is given.Cristian got his heart checked April 10, 2014 so far his heart wasn't growing it is normal that was a relief says the Cabral family. He got checked by his specialist in April 19,2014 after 6 months he looked well puberty was under control with the implant his growth was normal no weight was gained or inches tall he had blood test done a hand xray all with a great results everything normal. April 23, 2014 Cristian got sleep study done he was monitored all night with cables put all over his head and nose Dixiana had to stay over night in the hospital with him ,also everything came back normal.
Just as Cabral family was trying to cope with his diagnosis, they were hit again with more frightening news. August 14,2014 Cristian gained weight 79 pounds and  height was now 4.4 inches . Cristian got a MRI done  results of a faint tumor on his brain that's the cause of his early puberty and high hormone that will be monitored carefully every year hopeing it don't grow because he can have vision and speech aside with more side affects.Cristian also had some blood work.The doctors had put on hold these 3 shots everyday or 1 shot once a month for Cristian growth issue because he was doing fine but then again now the 2 specialist Cristian follows up with have to reconsider what's best for his health although these shots have never been tested on a child. Dixiana says There is nothing more precious to see than your children sleeping peacefully after a long day of fun activities.Feeling the depth of love you have for your child when suddenly you remember what the doctors have said and you are stopped in your tracks. You no more than close your child’s door when you are gripped by the fear that there is a time bomb underneath your child’s bed because there  is nothing you can do to help him. Doctors cannot tell you if it is ticking, they cannot tell you if it has a fuse, and if it does, how long the fuse is. What they can tell you is that one day, it may get better of it can get worst. The Cabral family says Each day is a gift.... Atleast  Cristian still alive and happy and that's the only thing that matters. Dixianas  promise for his son Cristian is I can't promise to fix all your problems, but I can promise you won't have to face them  alone! To be continued...

My son Cristian's Story: Surviving Neurofibromatosis

A warrior.

That’s how Dixiana describes her 6-year-old son Cristian, of Chicago City. Despite his ongoing battle with a disorder, neurofibromatosis (NF1) Cristian's  continues to inspire and bring smiles to everyone he meets. When Cristian's was nearly 3months old, he developed what doctors refer to as “café au lait” spots on his skin. Dixiana  also noticed that he seemed to be having more at age 5. Dixiana noticed one summer 2012 Cristian had hair in his private area strong manly smell in his under arms felt she had to take Cristian  to a doctor right away.

Dixiana brought Cristian in to the doctor his pediatrician before she send Cristian to a specialist he had to get some test done blood work x ray of his bones  and urine. A week later results were in Dixiana received a call from pediatrician  the results were as she expected high hormones  she explained  that his bones were developing like a 14 year old boy and he was going through puberty it was like a 5 year old stuck in a wrong body. Since summer 2012 and start school year 2013 Cristian changed completely from a child to a young man but he trying fight and be a little boy again with this he would need help from a specialist just a few days before Halloween  2013 The doctor recommended see specialist and to buy him deodorant.later after  He had an MRI done to see if he had a tumor along with eye exam with an Optometrists to see if this affecting his vision (NF1) can  cause problems in the way the body functions also went  to talk to hormone  specialist and another doctor specializes in (NF1) The doctors going over his tests of high hormones making him grow and hitting  puberty early and the “café au lait” spots they diagnosed Cristian with  neurofibromatosis type 1 (NF1), which is a  syndrome that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. NF1 can cause growth of non-cancerous tumors on the brain nerve,also  produces skin and bone abnormalities  — and for which there is no known cure. The diagnosis Dixiana took it hard one because she was expecting and knew she had to be taking care of her new born and be at Cristian's many appointments she had gone through 4 appointments in the month of October.That Thanksgiving  was incredibly tough. She was dealing with her sons devastating diagnosis. Lets back up Cristian was born premature 4 pounds he stood in the hospital for a month (in the NICU) Dixiana didn't even get a chance to hold him when he was born and till age 2 he had been getting nurse come check on him at home and  at 6 months he started receiving services for therapy he was late in  many things for example grabbing a toy and speech also he was born feet outward and Dixiana took him to a Orthopedic and from there hospital made him braces  to make his hone develop normal if not his feet didnt progress hes get surgery but all went well.Dixiana  did all She could to pull herself  together and make it a happy Thanksgiving  for her Family.” Dixiana couldn't believe again Her son had to be in a hospital most of the time but now with a disorder theirs no cure just Doctors telling her take it one day at a time.

In terms of Cristians ongoing treatment, he had surgery get implant help him stop going through puberty and maybe calm his adhd that  (NF1) caused. Learning  disabilities occur in about half the children with NF, some might need extra help in the classroom. “Surgery hit him hard,” says Dixiana. He continues to suffer from effects  he will never understand this disorder is genetic but none of Dixiana's or her husband family have this so Cristian's may be the first to pass it to his children because it affects one child and then passes on. The good news is after surgery hormones for puberty were under control but now it was him growing that was an issue.They continue to  test him  his test was to be without eating 4 hours he missed school for this test and put an IV and every 30 min get blood out of him and he had drink  juice to see his hormone level to check if he was still making  too much growth hormones Dixiana had to go for the results Feb 13, 2014. 

Cristian's most recent results he will see  physiatrist to talk about his adhd he needs another MRI atleast  2x a year check he does not get a tumor on his head because thats the side affect of (NF1) Cristian will be getting his heart checked to see if its growing and a sleep study because he hardly sleeps well. The medicine to stop him from growing and having health issues are 3 shots everyday or 1 time a month but that shot has never been tested in kids the doctor doesn't  know the side affects  “We’re all praying for a miracle,” says Dixiana.. Doctors are hard at work in search of better treatments for Cristian and other kids and adults living with NF. Until then, only thing Dixiana's does cheer her son up and make him happy because all he says is " Mom why cant i be normal"It’s a lifetime disorder, she says and that our family never knows when their will be good news or bad Her perspective of time has certainly changed. She says she appreciate her kids even  more now. She has been reminded that health is not guaranteed and that anyone can develop medical issues at any moment. all Dixiana knows she has never met a boy as strong as her son Cristian!