Mile #55 in honor of Breanna

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This is Breanna Svoboda's story from her Mom 

Breanna was born Jan 2 2010 she was a happy baby who seemed healthy and normal. We knew due to genetics that she had a 50% chance of having Muscular Dystrophy ( Paramyotonia Congenita (PMC)) as it runs in my side of the family (mom Heather).  She developed well over the years and had a few delays with walking and balance nothing to overly concerning and she was genetically test and confirmed to have PMC around 1. So most of her symptoms was considered part of the disease. See PMC is rare around 1 in 100,000 have the disease and there is not much research so Doctors don't know alot and there is not a cure or true medication. (For many years until facebook the only people who I knew had PMC was my own family My Mom great aunt and few great cousins then my own 3 kids. Now there is a wonderful small around the world support group of about 340+ members) But moving on Breanna had trouble with her eyes and ended up with lazy and crossed eyes that needed to surgeries to correct them one is 2011 and the next was 2014. She also had to get tubes in her ears for constant ear infections but so did our son. Still no one had any major concerns or worries about Breanna's health.

About Id say June of 2014 the Screaming, headaches and then throwing up started now mind you she was 4 at the time. I'm a real believer of Drs and when a kid is sick you take them in for a check up first few times Breanna tested positive for strep so that became the explanation. For the next 3 months I took Breanna in several times for these headaches episodes with screaming unable to sleep and throwing up on one of the first few visits our Nurse practitioner mentioned if we couldn't find something wrong we should have a MRI but it never failed there was some illness or they blamed our PMC for things that was unexplained. But I was not convinced that the PMC was involved I live with it didn't have these issues nor did other family members. Till the last 2 visits I was getting fed up and very frustrated seeing my 4 year old baby girl in so much pain.

That when it was suggested we should consider migraine medication. I was like nope you promised me in the beginning that if nothing else we would check the top of her head with a MRI to see what was going on if anything and until then I wont agree to medications like that she 4 this just seems wrong. So in agreement it was put in place to get a MRI. Now our Neurologist for PMC would not approve getting the MRI and so it came down to our family Dr office and threw magic it was done. We are now at the end of August and it had been months of struggle for Breanna with pain. When setting up the MRI I picked September 9 that was a day that worked with Dads work scheduled as again no one was still overly concerned about Breanna's condition and it was said no hurry to get it done. (Looking back I wish I knew now what standing up for your child meant and how urgent the situation really was for her. But we have not time for regret) So with little worry we set off Septemeber 9 2014 to Childrens hospital in Omaha Ne (98 miles away from home) for a MRI leaving our 2 older children at home to go to school that day as we was to be back before they got home. Everything was normal we checked into the Cares unit @ the hospital then MRI started and we went for a bite to eat. We came back up to the room to wait  and go home and that is when everything changed they had us go into a separate room we asked what was going on and everyone seemed panicked. The MRI operator come out before Breanna is fully awake or to the room (who in no way is supposed to tell you anything) says your not leaving your daughter has a Large Brain tumor & fluid backing up in her brain and we are trying to find you a Nero Surgeon and we have contacted your family Dr and they should be getting ahold of you to tell you whats going on. Now as parents you are in full on panic mode kids at home! Who do you tell or get help from? What is going on? Can they save out little girl? How did we miss this? You have to soak it all in quick and not show your fear. We did talk to our Family Dr Amir who really was kinda in the dark as his associate and our Nurse practitioner Kelly had set this all up and he was calm said we are working on things and stay calm we are going to find a Surgeon. Truthfully everyone was shocked by the MRI results. Soon they bring in Dr Puccioni he really became our glimmer of hope. He came in confidant and said I have looked over your daughters MRI and she has a Massive Brian tumor with hydrocephalus and cleared my scheduled and your daughter will have surgery tomorrow morning we are going to admit her to ICU. Do you have any questions? Im sorry yes I had a million questions but couldn't speek them.

The only thing that I cared about was Are you going to save her life can you do the surgery? His answer was Yes and he has not lost someone yet that really all I needed. We talked a little while asked a few questions that didnt sink in or seem to matter. Cause no matter what we had to do surgery is was that urgent. There was one thing Dr Puccioni said that stuck with me "was don't upset her or show your fear crying is fine but don't do it in front of her."  He was right if this could be her last moments we needed to be strong. So we was in a whirl wind the kind nurses took care of Breanna for a few mins for us to gather our thoughts and get some arrangements made before heading up to ICU. Family was notified about the situation and told to come if they wanted or could. Then one of us had to go home to get our other kids to be with us tomorrow and it was not something either wanted to do. On top of everything there was a terrible storm that night. When getting Breanna settled in the ICU room food was #1 for her. The Dr said to me your daughter is amazing she should not be walking talking or even eating with this tumor being to massive and the amount of pressure from the hydrocephalus. (Guess who just ordered her one of everything off the menu she wanted!) She should be dead and you are lucky that you got the MRI and we found this or one day she would have just not woke up or been gone in a instant. The next comment the Drs in ICU said you have one of the best surgeons around and lucky her was available not many Drs would attempt this and @ Mayo they probably would have just sent you home. What wait really!? All we could do now was PRAY for things to go right. We all got together after Chris and his dad went home to get BreBreanna siblings Carter and Tamera and a few things. Family started to come down and be with us. We took this time to show Breanna everything was going to be alright eat what ever she wanted treat her like the Princess we always knew she was. The next Morning we took pictures watched Doc McStuffins we promised her balloons when she woke up after surgery. Then we waited while it took 9 hours. We got to talk with Dr Puccioni he felt it all went well the hydrocephalus was under control no shunt needed. The tumor was different then expected it was attached to her cerebellum and they had to remove half of the cerebellum but tbe tumor also had fingers like a  octopus thew out her whole brain and it would just disappear in a area and come out somewhere different He had to stop when he did cause if he kept going any farther he would reached the center of her brain and it could have caused major problems or killed her. He felt he got about 95/98 % of the tumor but we would have to see what the next scan showed.

It would take a few days to find out about Cancer. Dr Puccioni did an amazing job didnt take much hair off for surgery even braided the hair to keep it out of his way. The scar was going to be minimal and the best part Breanna woke up and the long list of things that could happen were not she talked and asked right away for her balloons. Sure enough we had LOTS and more came. It was a start of how can we make this fun and exciting not scary with messages, lunches, packages, flowers and balloons all threw her stay. Secondly most important she wanted food and drinks.  The pathology report came back a few days later the tumor was a Pilocytic Astrocytoma brain tumor with grade 1 cancer. See life still goes on when you have a sick child Bills still need paid (no vacation or sick leave for dad on his job) the other kids still have school. So after the major issues was addressed and Breanna was doing well about 4 days Chris and the other kids went back home. We (mom and Breanna) spent the next 3 weeks in the hospital before heading home too. But not with out issues Breanna had leaking of brain fluid from her head incision for the hydrocephalus a # of times needed restitched, it was a real struggle getting Breanna to walk again the twitching/shaking and unbalance was terrible from loosing half her cerebellum and loss of strength. She also had a moment where half of her face just swelled up for no reason. The Dr almost thought we would have to go to Lincoln Ne @ Madonna for therapy before getting to go home. That was scary to be this far way was bad but to end up farther from family was unthinkable but we would do anything needed. We was released from the hospital and I told the on call Dr and nurse she was having issues with leaking the nurse seen it yet On call dr refused to see us before letting us going understand we was 2 hours about from home or this hospital and the Drs who just saved our daughters life. On the day we was to be released Breanna just didn't seem right the spot on her head was constantly leaking and the on call Dr refused to see Bre or listen even to the Nurses. Frustrated after spending hours requesting help we Reluctantly we left but spent the night with a family member locallocally in town and sure enough in the morning the issue was still there. I called the surgeons office explained the situation and said we would refuse see the same on call Dr that released us with our checking in or go back to the hospital if he was there. Thankfully everyone listened this time and Breanna was leaking and needed new sutures and was also readmitted to the hospital for a couple more days as her blood work was now off. But everything worked out and we went home. The Sioux city Journal did a story on Breanna's fight and just was a way for us to share with other families possibly help them. We started a face book page want to share any updates news & just away to keep in touch with friends, family, and everyone who cared wanting to know about Breanna. Trying to give & keep hope. Breanna's fight our Super girl

Nothing and no one prepares you for whats next. How alone you feel. How to deal with the fear, side effect, or special needs. The fact that she now had memory issues, balance issues, delays, special needs and limitations,speech issues and a traumatic brain injury. They don't give you resources for people who to reach out to or talk with that went threw this same thing. People to help you get threw red tape of everything. Its all on you to find everything you want to know, the people or places that can help,and just learn to live and deal with all expecially financially stress just handling everything @ once. And its not like you think people don't run to you trying to help see if you need anything offering help. Friends and family have lives and they go back to work and reaching out for help on our end seemed like begging. So no gofund me or fundraisers we just handled everything. Not that we never thought about it or contemplated the need for help.This was not the first trial in life nor will it be the last of our life. Don't get me wrong many people cared and still do watching and experiencing the growth Breanna makes on her facebook page. Ultimately you are teaching people sharing your story to grow your help network. We have made wonderful friends and new people who have and do so much for Breanna and encourage our family some of those people we may never met. She was nominated and excepted for Make a Wish. Nothing is ever the same again you are constantly waiting for what's next and dealing with check ups after effects and therapies. Your doing 2x as much now as you ever did on the same budget and the same 24 hours in a day. Yes she ended up with one of the best tumors you could have and thankfully low grade cancer meaning No treatment other than removal of the tumor. It was explained if we had chemo or radiation it would cause more issues later in life and best to just remove the tumor and wait.

The remaining parts would hopefully just disappear or come together for a second surgery to just scoop it all out hopefully years down the road or never if it don't grow   As this tumor was a slow growing type that is why is got so big before we found it she probably had it since birth and it took all those years to get soft ball size as we was told. It makes you wonder how she did it all those year with something that big in a small area just smashing everything. They say the brain and your body is an amazing thing and yes I agree.  From here we have had MRIs regularly every 6 months with no change then it happens her MRI shows signs of growth its time to schedule surgery to get the remaining tumor out. Wow we have come so far  no longer using a wheel chair she has been back in school shown that all the things that she was taught was there hiding and she was gaining getting stronger threw therapies once a week (PT OT Speech) and now we had to deal with the what ifs, the possible side effects, regression or total losses. This having to pick a date as parents to me was worse more scary that being forced in to a surgery. So many things was still going on in our lives we lost Breanna's Grandma (Heather's mom) 4 months after her first surgery and her oldest sister didn't take having to deal with Breannas situation well. But we knew she had amazing Angels watching out for her and the Prayers worked it will all be good again. Chris Breannas dad worried we should do her Make a Wish before her 2nd brain surgery in case. I wouldn't it was not going to be a bad out come. We set Breannas surgery with Dr Puccioni on March 23 2016. On March 22 our family gathered once again in Omaha Ne and some Amazing friends from Just Jeeps of Omaha dId a tribute drive by with their jeeps honked and wave @ our hotel giving Breanna best wishes, strength, and speedy recovery from surgery. The surgery didnt take as long this time 4 hours I think. I was so worried of the our come but hid everything well. Again she woke up smiling and asked for her Balloons. Yes they was there. Dr believes he got all the remaining tumor pieces but you just never know 1 microscopic tiny cell can cause a tumor year later so Breanna will always have MRIs to check.  Breanna has been super strong threw everything with always having a smile and great attitude. We spent short of a week in the hospital this time and she refused pain medications after the second day. Made it home in time for Easter bunny. There was more speech delays aphasia and apraxia threw this surgery, memory issues, she can become over focused on things, also she also has random crying fits mood changes and we are still having random headaches. Breanna still can not walk long distances or stand long periods of time with our fatigue or pain so we have a Medical stroller. We have had a EEG, sleep study and few other test due to side effects like numbness tingling in her arm/hand and leg but nothing has been found. Some of this will never change and others will take time to fix like balance she will have therapy for many years to maintain and get strength. The hardest part about everything is to know when Breanna is sick she has such high pain tolerance it could be weeks into an illness before we know it there. (UTIs, Ear infections, throat issues, sinus infections ect) Just this year she has gotten Mono @ age 8 and that threw us for a loop. We have had 2 follow up MRIs since surgery and things have been stable the next MRI is Aug 21 2018.

Beanna still sees many Dr specialist in Omaha every year that deals with her other issues like eyes, throat and Muscular Dystophy (PMC) that will always cause issues. Breanna has started using a program called Stars horse therapy to improve core balance. As well Breanna was approved for her Brain injury waiver to help Mom with all her special needs giving a helping hand around the house and respite as well to help teach her skills later on. We have now an amazing family friend and aid. She was also matched with Big threw Big Brothers and Big Sister who has brighten Breanna's life. On March 27 2018 we went on Breannas Make a Wish trip to Florida staying @ Give Kids the World and experienced Disney World & Seaworld and flying for the first time for the kids. Breanna had an amazing trip that she will remember for a lifetime. Everyday is a gift with Breanna and we continue to share our story and Pray for Breanna to grow into a happy adult. This is her story as of today and it will continue to change as the years pass.One of the biggest challenges is Its extremely hard when everyone sees normal on the out side & not the true extent of what is going on with your child or in your lives as you try to live threw it all move forward.
Update: One of our worst fears has came true. On July 11 2021 Breanna had a yearly follow up MRI. We got the news we knew could always come again but prayed it never would happen. A tumor was found growning but this time it was on top Breanna's brain stem. Thankfully its small approximately the size of a grain of rice. But this is not a location you normally find a Pylocidic Astrocytoma brain tumor according to Dr Puccioni. But he holds hope that since it so slow growing and took all these years to double in size that we are facing the same type of tumor that a cell just broke loose during previous surgeries travel throughout her spine in the spinal fluid landed on the brain stem and found blood supply to grow. But this ultimately means Breanna needs a 3rd Brain tumor surgery. Yet again as parents we have to pick the date and to make things worse we are living threw the COVID-19 pandemic. Dr Puccioni asked we try to pick a surgery date within the next year. Due to the location of this tumor as a Mom not knowing and the what ifs of the outcome from this surgery. We chose to wait till after Breanna's 12 birtbday. So Breanna will have her 3rd Brain turmor surgery March 7 2022. We continue to pray for strength for our little girl and entire family. As you never know what challenges Breanna is about to face. Breanna is one bravest kids I know. She is just wants to live a normal life again and get this surgery over with. 

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Thank you 
Heather Johns 

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