My daughter Briannen is now 12 years old and this is her story – I would like to say this is the first time i have written it all down and sorry it is to long lol She was a healty child until…….
Just before christmas Briannen got really bad tonsillitis with high temps and really not well i took her to ED where she was given antibiotics by new years she started to come right but was complaining about her legs hurting and i said it was just growing pains and she had been in the pool all day every day over the holidays.
On the 3rd of January her 11th birthday she had a pool party at home but as all her friends left she was still saying her legs hurt so the next day i said to rest and she did. When she woke up on the morning of the 5th she was really not well the antibiotics had not long stopped and i thought maybe it was coming back she just layed on the couch all day it was a hot day so i was contuning to fill up her drink bottle she did not move off the couch all day! at 4pm she said she couldn’t go to the toilet (she is 11 i don’t monitor at home what she drinks or when she goes) but i had known i filled it up 3 times that day, i took her to our local GP and he said we should go to ED so i went home to grab a few things and Brie went to the toilet and said some came out (the jury is still out on that one!! lol) so i cooked dinner and thought i would keep an eye on her when dinner was ready i could not find her she had taken herself to bed (not like her at all) she felt warm and had a little temp so i have her some panadol she went back to sleep at 9:30 that night she woke with really bad pain in her back i thought kidneys so i rushed her to ED she still said she needed to go to the toilet but it wouldn’t come out they said to me she hasn’t drunk enough water and i said any other day i would say the same but i have filled a big drink bottle up 3 times today and she drunk all of it after making her drink for an hour and she still couldn’t go and then they tried to IDC for an HOUR on my little girl i had enough it was 2am and then i was told i had to take her to the Mater Children’s Hospital in Brisbane city.
Once we arrived they rushed her in got a IDC in first go and emptied 2.5L out of her!!! by 5am in the morning i was told that she now had no feeling in her legs and she either had MS or spinal cancer!! mind you i had not yet slept and all i kept saying is i dont understand she just needs to do a wee!!. The next few days were a blur, so many doctors coming examine her and a MRI was booked for that afternoon by this time she has had lots of pain relief for her back pain and was just sleeping (she tells me she doesn’t remember each attach Thank God!!) The first MRI she was awake and could not stay still long enough but they did get a image of her spine where she was having the pain in the lower band and found a disk bludge and there may be cancer in her spine then Neurosurgeons coming to see me at 11pm at night telling me they are going to cut some of her spine out and going through her chest i just could not believe all of this was happening!! On the Saturday she was booked in for brain and spine MRI and LP under GA i managed to drive the 40 min home have a shower for the first time in days and pack i was told we would be there for 4 weeks minim. I was back in time before she woke up and this is the first of many heart breaking moments for me she did not wake up well from the GA it was her first time she looked at me with anger in her eyes and said “how could you let them do this to me” with out a thought i said “because i love you and i will do anything to make you better” as i hold the tears back and look around my friend and the two nurses had tears streaming down there faces, that was my first UH HA moment that i didnt care what i had to do i was going to make sure she got better (I would just like to add she is my only child and i can not have any more children so she is it i can not lose her) A few hours later the Neruo turned up and said can i see you out side please i was there by myself (something i have got use to over the last 12 months 🙁 ) i walked out to a image of my daughters brain on the screen and i could clearly see 7 lesions on the lobes of her brain all i could think was tumours!! but then i was shown her lower spine image and was told her had Transverse Mylenitis and this is a one off thing mostly properly from the Tonsillitis and will never happen again. So my daughter was paralysed from the waste down after she was given 3 days of steroid infusions she had to learn to walk again and it took 4 weeks for her to be able to go to the toilet properly but to everyone’s surprise she made a complete recovery and i was soo thankful that my child recovered. When we left the hospital on the day we went home nothing was said to me that this could happen again.
We were home ONE week I got her all ready as school had just gone back she managed the first day back at school the next morning she woke up and said her neck hurt and i said maybe she slept on it funny and she is like i am really tired Mummy can i go back to bed and said of course darling we wont worry about school today. She woke at 3 in the afternoon said her neck was still really sore then she told me she had pins and needles in her tongue so i have rushed her back to the Children’s Hospital we were lucky our Neruo reg was in ED at the time and saw us he examined Briannen and could not find any clinical signs apart from her complaints he asked me what i wanted to do and for some reason i knew we had to stay he said ok i will take bloods just make sure nothing is going on and should be able to go home in the morning. At 8am he walks in and wakes me up and says Chelsea bloods are back all fine you can go home both of us looked at Brie and her eyes were open but she was not there!! her tounge was hanging out of her mouth and she could not talk her move her legs it was like she had a stroke both of us just looked at each other in horror and shock and he said but she was fine last night!! and that is how quick it happens my second UH HA moment when i was told that her brain stem was being eaten away so to speak they started steroid infusions straight away and then told me they were giving her IVIG at that time i did not know what i know now or care what they were saying all i could think was make my little girl better. Only just a few months before i lost a friend to a motor cycle accident whos brain stem was severed so i knew all too well that the brain stem did and how serious this was. I was also told that her first LP results showed that she had a very very rare Auto antibody NOT the NMO antibody but a cerebellum binding antibody!! They told me that they have no idea what it was and only 100 people in the world had it but the closest thing to it was NMO so that is where we got our diagnosis from. 3 days later and still no change then her heart rate started to drop on the 4th night and she was not getting enough oxygen she was going into early respitory arrest one of her doctors stayed with her all night i remember her saying with tears in her eyes at 2am i am sorry Chelsea there is nothing else we can do, she has to fight! i went down stairs in the dark of night and just cried and cried and cried i prayed and prayed and prayed mean while i rung Briannens father (we have not been together since she was a baby had gone away for work only 3 days after the first attack and not been back since and i dont have a mother so i am all on my own with just a few good friends and my dad to help me) i told him he was too far away to get back for at least a day. I cant even describe the feeling inside me that i felt that night and one that will haunt me forever but little did i know then it would not be the last time i had to feel that feeling!!! By the next morning from a miracle from the heavens she stabilized and yet another 3 weeks before she could walk and talk again we had a few more hiccups along the way with an emergency MRI on a day she just went “CRAZY” the only thing i got told after the LP is she had too much pressure on the brain. She made a full recovery once again and says she cant remember any of it!! and it was only a few months ago that i actually explained to her how close i was to loosing her.
She went back to school and was being a happy little girl i had taken her to ED twice in the next two months as she kept complaining of stabbing pains behind her eye but they could not find anything and she had no clinical signs so after 2 nights each admission we were sent home until April when she woke up one morning blind in one eye, i rushed her to the hospital where they confirmed optic neuritis she was given 3 days of steroid infusions again and another IVIG infusion. I was then told about this chemo Ritux and they wanted to give it to her the next week i weighed up the pros and cons and decided she was blind what else do i have to loose she got her sign back the day before her first chemo infusion and she had it weekly for 4 weeks i was told that 3 other children in Australia had it and had no attacks since and it will last about 12 months.
From May 2012 to January 2013 we had 7 more admissions for fatigue, pain, numbness, tingles, headaches, banding shuffling while walking and each time there were NO “clinical” signs so we were referred to Psychologist in the hospital and i was told on a number of occasions that she is anxious, worried, attention seeking (she is a only child for god sake) and trying to get out of school and after a few days of observations we were sent home each time with NO support even when i found a beautiful lady named Marlene with NMO and she said all of Briannens complaints were what a adult felt with this disease the doctors still didn’t listen to me!!
Until nearly a year to the day on the 10th of January we had our normal eye clinic appointment Briannen has slept all day the day before as we had been to Wetnwild for her birthday on the tuesday so i didn’t find it too weird since christmas her complaints were becoming more and more pain tired tingles how ever so many time i have taken her up there and nothing has happened so i decided after our eye clinic appt i would take her to ED to make sure Neuro could not see any clinical signs i was missing, we got to eye clinic at 8:30am she had not eaten since the Tuesday dinner and even turned down Macdonalds for breakfast on the way in (what child does that!!) she was trying to sleep in the waiting room on the row of chairs i was so upset they still made us wait 3 hours while i am saying she needs to get to ED she is so much pain in her head and neck finally we got there she slept the rest of the day in ED and woke up at 4pm when Neuro finally saw her, after full exam she was not showing any signs of an attack except she said she had double vision and we both put it down to the dilating drops from the morning. I was asked what i wanted to do and i was concerned because she had slept for two days straight and had not eaten they told me it may just be a virus and to go home and bring her back if no better in 3 days so i didnt listen to my gut and took her home we got home at 6pm she went straight to bed and didn’t want dinner i kept checking on her and at 9pm she had a temp of 38.8 so i woke her up to give her panadol and she opened her eyes and thought i was seeing things (i had only had one glass of wine lol) her eyes were inverted and facing each opposite way!!! she was not with it at all very simple was not aware of what was going on i put her in the car and after what i already know that was BRAIN STEM INVOLVEMENT i drove as fast as i could and all i could think was please please dont go into respiratory arrest on me please just hang in there baby till i get there i don’t know if i was looking at her more sitting next to me or the road!!! In ED i still had a stupid doctor telling me she could have a UTI i am like admit us Neuro will see us in the morning at 9am the same Neuro who i like very much who saw us the afternoon before walked in and all she could say was im sorry im sorry i said its ok i know how quickly this can happen mean while my daughter was there but not there she was simple not making sense like she was back in the 70’s high on acid by 4pm that afternoon it was confirmed another attack in the top of the brain stem by the saturday she could no longer open her eyes 3 more steroids and IVIG infusions were given mind you not for 30 hours after the MRI was done!! On the Monday morning at 6am i was woken to my daughter chocking and blue she could not even turn her head to vomit i jumped up rolled her and screamed by this time she could no longer talk at 11am that day she vomited for a second time half a bag of blood (to this day they still cant tell me why) one pupil was the size of a dinner plate the other a pin prick by 2pm she went into tacky cardie where her heart rate was sitting at 150 with a temp of 39.5 the rest of the day was a blur until later that evening her heart rate dropped to 50 and temp 34.5 the temp part of her brain was being affected and she was completely UNRESPONSIVE for 5 hours they only way they could get her to react at all was the sensor test they do on brain dead people, so here i find myself again for the second time in 12 months just crying a praying and feeling what no mother or parent should ever ever have to feel and i had two more times of nearly losing her in the next 2 and a half weeks i watched my daughter lay there and not move not open her eyes i was lucky if maybe twice a day get 3 words out of her and they were always I LOVE YOU the only way we could communicate was her to squeeze my hand i begged i pleaded that there was something else wrong she had finished treatment 2 weeks earlier i screamed i swore i just could not believe it and they kept telling me give it time until finally they did the second MRI and the lesion was twice as big and way way more sever than the first MRI, there are so many things they have done wrong and in which many investigation have been raised not only by me but other staff members of the hospital as she could not eat she was not FEED at all for 8 days until i realized not on a pressure bed for 8 days until i realized not on a drip either and during the 2 weeks she also got server jaundice in which they still cant explain to me. She could not move any part of her body. So with a very very sorry head Neuro coming to me and telling me the MRI results in which i said i told you so we went into ICU and received Plasmiaphrisis the next day and also the next two days after that by Sunday my daughter could finally move and talk to me and see me and i thank the heavens again!!
As i sit here and write all of this out and re read it i actually dont know how i have got through the last 12 months never lone the last 4 weeks i stay at the hospital with her the whole time i had 2 nights off in over 4 weeks but i should not be commended or told how great or strong i am for not only doing this but really doing this on my own because what other choice is there, all i can do is put one foot in front of the other and just keep going because she is my princess my angel my world and i am nothing with out her. I can not even begin to tell you that i am the most proudest mother that you will ever meet she is so strong and brave and had fought sooo hard to stay alive when all the odds were against her and she is what gives me my strength to get through every minute of every day and there is nothing that can ever come between a mother and the love they have for there child, so i am thankful to god for leaving her here to keep me grounded on days that i don’t think i can keep going, to get me out of bed when i just want to go to sleep and not wake up until this nightmare is over, when i haven’t slept for days on end because all i could do was watch her sleep and too scared if i feel asleep that i would lose her. So this is not my story or journey but that of the most remarkable little lady that i have ever met!!!