Dexter's Tales

The true story of a 1 Year Old diagnosed with Neurofibromatosis. The challenges he faces; the highs and the lows.

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Our little miracle.

I find it difficult to believe that the last blog written was just over 2 years ago now. So much has happened during this time. Our boy continues to constantly amaze us with his resilience and strength. We have been lucky enough to have had access to world class specialists, and truly the most remarkable drug for 3 and a half years now. Dexter hasn’t had any further reduction, but all tumours remain stable. STABLE. We have been blessed to have stable MRIs for 3.5 years!!!! This was a dream we never realised we would have.

There have been blips on the road, a new tumour found on his optic nerve, no one can explain why or indeed how this has happened whilst he has been on treatment, as it developed 2 years after starting. But it is stable. ALL of his tumours are stable. Sometimes I find myself saying it over in my head, to let it sink in, just how lucky we are.

While we do feel blessed, we also continue to struggle with the routine that NF has placed on us. The never ending worry, stress to ensure that all doctors appointments are up to date, that he is getting everything he needs. It is a constant battle to stay on top of the side effects from this chemo drug also. We have it down to a relatively fine art now, and with some brilliant doctors working with us to keep changing up medicines we are keeping him mostly infection free, most of the time. There are frequent courses of antibiotics which used to worry me more, but honestly I am just rolling with it now, we will do what we must to keep him healthy now.

At the beginning of 2018, I made the tough decision to go back to work full time. I have been blessed with a wonderfully supportive company who have offered me flexibility and kindness, but damn it’s exhausting. As every mum would know the guilt you feel working when you have young children is intense, I have found the guilt at working with young children and a chronically ill one in the mix, very difficult to bear. I am doing the best that I can on both fronts, and just continue to hope that it will be enough.

We received word in August from Dexter’s oncology team in Sydney that the drug company was wrapping up Dexter’s phase of the trial. This was truly my worst nightmare. We don’t know for sure what will happen when the drug stops, but everyone who has offered a guess has bad expectations. We need this treatment to continue for as long as possible for Dexter to have the best chance. I still don’t quite know how we have gotten so lucky, but the drug company running this trial have offered Dexter continued, indefinite compassionate access to the drug upon dissolution of the trial. INDEFINITE COMPASSIONATE ACCESS!!!! His oncologist wrote to Dexter’s other specialists to let them know that he expected the trial to be wrapped up by the end of this year, but it now seems we will have at least another year on the trial before this happens.

Life will become even more “normal’ for our superstar when this happens. Less travel, less testing, less invasive procedures. Leading into his first year of schooling next year this is just so exciting for us all to imagine, but especially Dexter. As he gets older, the injustice of his condition is becoming more acute to him. Fingers crossed for just one more year, and then we take one more step in making Dexter’s life a little better again.

I’ll try not to leave it so long before our next update!

Bec x

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Finding a new normal

This blog has been a long time in my head…struggling to get clear what I want to say. It feels like this year is disappearing before our very eyes. We have been revelling in the positives that 2017 has been bringing us. Dexter and I have found a routine with our Sydney trips, and after a year on treatment, we have had some truly miraculous results. The day before Dexter’s 3rd birthday we received the results from his latest MRI scan at Westmead Hospital in Sydney. His trial oncologist explained that while the results appeared to indicate a stable MRI yet again, based on the significant changes to Dexter’s appearance he wanted to compare the few measurements from the first scan 12 months ago to the current measurements. We were all shocked by the results. Of the 3 sections of the tumour that had been measured, all had seen significant reductions, from 12% in his temporal fossa, 25% in his mouth, to 56% in the section in his neck. This is so far beyond what anyone expected to see from this trial drug.

 At this stage, we will be continuing on with treatment indefinitely. No one knows what will happen to the existing tumours after this treatment ends, so best case scenario for our boy is to continue on this drug for as long as possible. Dexter’s health has seen such a drastic improvement this year, and his development has progressed beyond what we expected as well. All in all, the last couple of months have felt like we could even get to a place where our little NF Warrior could lead a normal, healthy life. The last two years of fight, pain, heartache, way more travel and medical procedures than any of us ever imagined…it is all so worth it.

 I am acutely aware of our, more specifically my, lack of communication this year. It will be no surprise to anyone that we have all struggled massively with this diagnosis and everything it has brought with it. However, for me personally, I initially clung to a feeling of indignation and frustration at the lack of knowledge of Neurofibromatosis. It gave me a purpose, other than the soul consuming fight to find some treatment for my baby. I threw myself into helping raise awareness and fundraising for The Children’s Tumour Foundation of Australia. It gave me some hope, but it also drained me so completely. By the start of this year, I was so burnt out and exhausted that I felt lost. Our normal lives were a distant memory, but I had yet to settle into or even find a new normal way of life. The boys were thriving, and that was my sole focus, so I just continued to withdraw. I left my position on the CTF committee and just focussed on getting through day to day. A dear friendship was lost during this time. This still makes my heart hurt. But I know I did what I had to, to get through.

 Dexter’s health has improved so much. We have been able to spread out his specialist appointments, so I have been able to work it that we can have a month or two go by with no doctor appointments! He has settled well into his special ed classes and we have even been allowed to move onto quarterly trips to Sydney for his treatment! We will get to stay home for periods of 10-11 weeks at a time!

 Finally, I feel like I have found a way to settle into life again, not just as a wife, a mother and a carer, but as a person again. I have finally decided to start studying nursing as of first semester 2018. I want to be able to make a difference in the work that I do, I want to help people. I can’t make sense of a life going back to work in finance. But I hope that while I am still focused on Dexter’s health, I can start to work towards a future for myself that makes sense for me.

 So while we are still passionate about raising awareness and fundraising for Neurofibromatosis, I am allowing myself to be a little bit selfish as well. I am wanting to take time to relax and enjoy the good times we have been blessed to have this year. We will continue to update the blog and Dexter’s Tales facebook page, but if there are months that go by with no update, please know that in all likelihood this is because we are gratefully enjoying good health and happiness. 

 Bec x

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Another MRI

Today, right now in fact, our little warrior is having yet another MRI, this time in Brisbane. This one is a long scan, longer than 2 hours under general anesthetic. Because he has to have such a long scan, he has to be scheduled in the afternoon, so we had to fast him from 6am until he went under at 1pm. Generally, he does really well, and today he tried his best, but he was so hungry. I tried hard to keep all evidence of food away from him, but when we got to school to drop off Harrison, there were children eating and that’s all it took, he then started asking for food. Using all the food words that he has: milk, banana, grapes, toast….. All of which I tried to just distract him onto anything else.

We had a short time at home playing before we left for the hospital, iPad and toys were working reasonably well, as well as having our lovely friend Bec to distract him, but his tummy kept reminding him to ask for food.

Finally, we packed up and got in the car and by this time at 11am, there was nothing that would distract him. He screamed, crying and begging me for food. “Please mum-mum, Please mummy, PLEASE”….. All I could do was keep driving and promise him that I would give him something as soon as I possibly could. He had calmed down some by the time I found a car park several blocks from the hospital. Because his scans are so long, I always park blocks away so that the cost isn’t too much. So by the time I had walked him in his pram to the hospital he was calmly watching his iPad again. Thankfully, the Lady Cilento Children’s Hospital has always been so efficient with Dexter’s scans so we went straight through when we arrived. He fought the pre-med, but kept it down and then we got to relax and chat to our wonderful nurses and doctors until the pre-med kicked in.

Thanks to the pre-med, my brave boy didn’t fight the gas mask too much, and I made it out of the Imaging Department not crying this time, though every time they need to tell me multiple times to leave. I just find it so difficult to walk away from him when he is asleep like that.

So now I wait, and try to keep myself distracted… unsuccessfully yet again. My brain will always wander around all the perceived possibilities that this scan will show. All the exciting potential shrinkage, right through to the worst case scenario of growth and new tumours. No matter what I plan to distract myself, this is always the way it will happen. I wait, stomach churning, legs shaking, on the verge of tears. But I will hold it together, I will be brave like my little Dexter. I will hope for the best case scenario. I will hold him so tightly when I get to be with him again. I will thank my lucky stars that this little warrior is my son, my baby boy.

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An NF world, 2 years on…

So it has nearly been 2 years since Dexter’s initial clinical diagnosis at his first paediatrician appointment, after months of trying to get a referral through several different GPs. It feels like life could not be more different to life then, before NF entered our world. We went on for a few months assuming his would be a mild case, convincing ourselves our lives didn’t need to change much, just a slightly more heightened awareness was needed. But now here we are, struggling with the highs and lows, still adapting to life as it has to be in our NF world. 

Luke and I always wanted 3 children. It was always our plan. Dexter’s birth gave pause to this due to complications, but for me it was never off the table. The dream of a sibling for our cheeky Dexter and loving Harrison, the desire of holding my own newborn miracle, even struggling through breastfeeding again has been so strong for me. I ache for another baby.

Then came NF. Then came the permanent pain, stress, worry and fight of NF. We have had to accept that our dream of another child lives in our pre-NF world. I have struggled with this, and still do enormously, so came the decision to be sterilised. Frustratingly, my GP, referred gynaecologist, family, friends and even Luke agreed that this was the right decision. I wanted someone, anyone to dismiss me as crazy, that we could make it work if we wanted to. Luke didn’t want me to go through the pain, and suggested that he have the snip instead, but I knew that if it wasn’t me, it would be impossible for me to accept emotionally. Even though deep down the logical part of me knows we can’t. Dexter deserves more, Harrison and Luke both deserve more. For as long as we are lucky enough to have our beautiful Dexter with us, he deserves to have my focussed determination fighting for him and his health. I still dream that we will eventually get him to a point where his health is a minor concern and he is living a normal life, but we will only have a chance of this if we fight and fight hard for the next few years. This road has been so difficult for me emotionally. Sitting in the gynaecologists office and seeing all the happy couples, all the beautiful pregnant women, and there I am, 34 years of age waiting to be seen for a sterilisation procedure. It just felt so wrong. Knowing that I am blessed to be able to conceive, and yet I am unable to do so for external reasons.

So in order to attempt to quiet my inner desperate emotion, I had the surgery Friday. Luke took the boys up to my parents’ place for a holiday, and although we had decided he would stay there with them, he came back in the same day to take care of me post-op. I am so grateful. Both to my caring husband, who wants to be able to take away all my pain, also to my amazing parents who have no problem looking after our terrible 2, even with everything that involves medically for Dexter, and my Aunt and good friend who are both always willing to help out in any possible way.

NF has taken so much from us, and I whole-broken-heartedly place the blame for this sterilisation on it as well. Through this pain, I know I will heal physically, and now I hope emotionally as well, but damn do I hate NF even more today.

Bec

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It IS a Merry Christmas!

A few months ago, Bec and I sat in the car about to go out for dinner for the last time for seven weeks. She was about to take our baby boy to Sydney to begin testing and appraisal for the MEK medical trial. We sat there talking about what we were deciding on Dexter’s behalf. Were we doing the right thing? Were we going to make matters worse? Could he die?

These questions, and many more besides were running through our minds, and together we realised that even if it did go horribly wrong, Dexter’s life would mean something. He would have provided the researchers valuable data that would, fingers crossed, lead to a cure for what is such a devastating condition. But we also realised that if we did nothing, Dexter would only get worse. His tumours would go unchecked and continue to grow, cutting off his airway, blinding him and making him deaf. Worse, we realised that he might not live beyond age 5.

In the end, it was an easy choice.

Fast forward to today. Dexter is a new boy. He is developing REALLY well, talking more and more every day. His coordination has improved, his relationship with his brother has…well, they are brothers. They have their moments of screaming at each other, but to hear Dex call out ‘Harry’ to play with Ninja Turtles or Hot Wheels, it honestly melts your heart. We have noticed a change. A HUGE change. A change for the better and one that has ignited our hope. And then, Christmas Eve eve, 2016, we received a letter.

From Dexter’s most recent MRI in Sydney, our Oncologist reports that there has been minor SHRINKAGE of Dexter’s tumour!

You honestly do not know how this makes us feel. In fact, I’m not even sure I can put into words how it makes us feel. It is almost unreal. I mean, we have been looking at Dexter the past few weeks and we have noticed that you really can’t see the tumour anymore. Before he went to Sydney it was really obvious. The whole right side of his head was distorted. But now…now he looks like any other 2-year-old baby boy.

We thought, best case scenario, that the trial would halt the growth of his tumour. We never thought the word ‘Shrinkage’ would be linked to our Dex. But it is. Now, we are still waiting on the volumetric measurement results, and we really don’t know yet what amount of shrinkage there is…but there is shrinkage!

This is the greatest Christmas present we could have hoped for. But we could not have been where we are today if it wasn’t for the help and support of so many of you. You may never know what your support means to us but please know that it is so very much appreciated. We would not have made it if it wasn’t for you. So…I say, on behalf of us all…and most certainly our little angel, Dexter…THANK YOU. If your Christmas is filled with even a fraction of the joy we have in our hearts right now, then you are a very fortunate person indeed.

Love to you all,

L

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Groove

The next time Dexter is in Sydney, he will be undertaking another MRI. This time, it will be to determine whether or not the treatment he is on has had any effect. We are hopeful. Signs look good. But this is not really the reason I’m writing this post. I only tell you this because I know that many of you are curious. ‘How is he?’, ‘How’s he doing?’...and you know what? We truly, honestly love that you want to know. It makes us feel that there is an army of people out there, across the world, who truly care for our situation. And for that, I thank you all from the bottom of my heart. 

But this is not the reason for this post.

Dexter is getting treatment. He is one of 10 world wide undertaking this phase of the trial. He is lucky. And I know, looking from the outside in, he seems to be doing so wonderfully well. That’s what we keep saying too. ‘He’s doing well.’ Oh, we try not to get our hopes up...but we also know it is what people want to hear. No one...not even us, wants to hear bad news. So far so good. But really, the only thing that has changed for us is that now, every morning, at about 5am (because that’s when the little blighter thinks it’s a good idea to wake up), we fight with our son (I say we, it’s Bec 99 times out of 100) so that he can take his Chemo orally, then we have to prevent him from eating or drinking for another hour. Plus, on top of that, as he is now anaemic, we also have to force down iron medication that genuinely makes him gag. Other than that...nothing much has changed. Bec still looks after him 24/7. She still manages ALL of his specialist visits and keeps herself up to date on EVERYTHING that needs to be done for his care. We still watch him like a hawk. We watch his growth, his development, his behaviour. The uncertainty that we had at the beginning of this journey remains. The fear that we had at the start is still here. If anything, just more has been piled on. But something has changed. Us.

We’re in a groove now. This is the new normal and for those looking in, we look good. In a way, the groove has given us some security. We know the ebbs and flows of this thing now. We know how to smile and laugh when all we want to do is scream and cry. We have found our groove and it looks like we are coping with our situation.

We ARE coping. But it has NOT gotten easier. We lean very heavily on each other. I see the stress my wife carries and I know that I can do nothing to relieve it. She vents her frustrations to me, and for the most part, I do my very best to be the rock she needs. I try to be the anchor that keeps her grounded. But then I see her don the mask...the same mask I don every day. It is the mask that has the smile, the friendly, warm look. Actually, her mask is a little better than mine. Hers is full of caring for others. Hers is one that allows her to be strong and powerful, to be helpful and considerate. Mine is full of jokes...but it slips from time to time. My frustrations come to the surface every now and then. But hers? In public? It never slips. 

At home, we are real. At home, to each other, we are real. We are only real for each other. It is what I love about her. It is what keeps us strong. But it is hard. It is hard to keep those masks looking so shiny and new. It is hard trying to find joy for each other, when all we want to do is hold each other and hide away. But we do find joy. Our house is full of laughter and love. Our boys...our mad, crazy boys, are what keep us going. No matter how hard it gets, they make us laugh. No matter how sad, angry, frustrated or scared, our boys find ways, every day, to make our lives shine.

But it is the groove that we are in that we find comfort in. Our lives have been...for so long now, so uncertain, that even though it has gotten harder, the groove we have found has given us strength. Strength to maintain our masks. Strength to laugh. Strength to love.

L.  

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A Year On...

A year has now passed since we first found out the severity of Dexter’s condition, that first fateful MRI. So much has happened, and yet while there is the occasional day where I feel more in control, that suffocating feeling of helplessness is still so intensely overwhelming.

We cannot believe our luck in securing Dexter’s place on the chemotherapy trial. So far, without any hard evidence, it feels so successful! He is a happier child, seems to experience less pain on a daily basis and has grown so massively in the past several months that it is rather difficult to even see the tumour through the right side of his head anymore. We are just so intensely grateful. The journey has been arduous and required strength that none of us felt we could manage, but we are making our way through. Dexter has now made it through nearly 3 full months of treatment, so our trips to Sydney are becoming easier. Dexter has proven himself time and again to be one of the most charming and genuinely hilarious little boys. He has inherited his daddy’s natural comedic timing, humour and expressions. With all his suffering this last year, his overall attitude and happy disposition is truly awe-inspiring.

We travel to Sydney every month for up to a week depending on the number of tests Dexter requires on each trip. We take back the left over supply of the drug, and collect the new bottles before we head home each trip. Our trip in December will be important as the tests will be able to show us whether this treatment is working for Dexter. We will continue to travel to Sydney every month for a year and then once the first year is complete, providing the treatment is working, it will become quarterly trips. However successful, the cost of this treatment has been enormous for us. Sadly, due to the treatment still being in the clinical trial phase, none of our travel, accommodation or any expenses are covered, even in part, by the government. We are hopeful that Glaxo Smith Klein, who are running the trial, will reimburse us for the majority of our travel and accommodation expense, eventually.

As important as this treatment is, life or death important if we are being brutally honest, we would never have been able to afford this for our little Dexter, were it not for the incredible generosity of everyone who has contributed both online to the crowdfunding site that my sister Casey set up, or privately to us personally. I know we would have just had to find a way to make it work, but honestly the phenomenal generosity of everyone has been life changing for us. There is no way we could possibly convey just how grateful we are, so I will leave it with our heartfelt thank you to everyone.

This last year has taken an enormous toll on our whole extended family, and with some difficult times already behind us, it makes me so sad to think times are only getting harder for our family at the moment. I have been receiving treatment for severe stress, anxiety and depression that has taken hold of me since Dexter’s health concerns were brought to light. There is so much stigma around mental health issues, and I admit I struggle with feelings of shame at needing help right now. The most important thing for me is that I am able to get through each day and be the best mummy and person that I can be. Admittedly, some days are better than others, but every day I do the best that I can. Life is hard, and I know that Luke struggles sometimes also, but our focus is always our two beautiful boys and we will do whatever we can to make life happy for them. We want to show our boys the type of people we want them to become: kind, strong, decent, respectful, generous, hard working and responsible.

So one year in, our lives are unrecognisable, but there is still joy in almost every day. We won’t let Neurofibromatosis beat us, we will not let it define Dexter, we will fight every step of the way for our boy and we will fight for some recognition of this condition and the devastating effects it has on every family it affects.

Bec

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Just keep breathing….

So we have what we had hoped for, the desperately coveted place on the world-wide Clinical Research Trial for Plexiform Neurofibromas. We are here at The Children’s Hospital in Westmead, 3 weeks into one of the most difficult experiences of our lives. Emotions are running rife; euphoria at having the place for our boy, desperate aching sadness at missing the other half of my family. Incredible loneliness trying to get through this process on my own, frustration at Dexter’s increasingly bad behaviour. Sadness at what I am putting my tiny little boy through, fear that he will make it through the testing and we will have to start giving him this drug that we can have no idea how he will react to. Fear that he won’t make it through the testing and we will be back to utter helplessness, desperate ache to reverse our lives 12 months and avoid ever hearing the word 'Neurofibromatosis'.

I always felt that being part of a clinical trial was going to be fraught with difficulty and require a level of patience that I knew I would struggle to achieve, but I never really considered how hard it would be to do it with a 2 year old. If this really weren’t our only option, I don’t think I would be able to do it. I wouldn’t want to put him through everything that is involved with this treatment, and for such an unknown outcome. But here we are. Finally he has started the treatment. I am filled with incredible overwhelming joy that we have something that we can now actively do to help our brave little boy fight these tumours taking over his tiny body. However, I have to constantly force myself to push aside the terrifying fears of potential side effects from this experimental treatment.

Our experience has been eased by staying here at Ronald McDonald House at Westmead, not just the incredible generosity and kindness shown by all the staff and volunteers here at the house, but by being surrounded by so many other amazing families all going through intensely difficult and emotional journeys. I am lucky to have found some lovely friends in the other mothers and fathers staying here, but I admit it does hurt my heart to think about why they are here. There is just too much pain and suffering for so many amazing children, however there are some really hopeful and inspiring stories as well, and the strength and resilience of not only so many children, but all these phenomenal parents is beyond inspirational.

Writing this after such an immense, wonderful and tiring weekend with Luke and Harrison down here with Dexter & I, is probably a bit of a mistake. I am emotional and once again feel overwhelmed. My beautiful, sweet and sensitive soul Harrison misses his mummy. I think that this was not so hard for him before he came down to see us. I am truly devastated at being separated again, and found it very hard to let him go again. My poor husband Luke, came down to spend some time with his loving wife and gorgeous son, but ended up copping all of my built up angst, frustration, stress and anxiety, that I couldn’t stop from pouring out of me, in my comforted state having him around. My crankiness, combined with Dexter’s increasingly bad behaviour must have made for a very less than ideal weekend away for Luke. Sadly, I guess that this is just part of the path that we are on. I have apologised and he understands, but this journey is taking a toll on all of us.

Dexter has been responding fairly well to the drug so far. We are hopeful that we have passed the stage of any critically adverse side effects now that we have nearly passed day 4 of treatment. So far he has only been a bit off his food, so we are assuming a touch of nausea.

I still find it hard to believe that my baby boy is having treatment involving chemotherapy drugs. It’s not what most people expect when they hear Chemotherapy though. This drug contains a couple of chemotherapy drugs, ones that are able to be taken orally, and it is combined with some other different drugs as well. This combination is now in it’s 2nd phase of trials, and the only hope (not promise!) is that it will slow, or stop the growth of the tumour in Dexter’s head. This will not get rid of the tumour and it will do nothing for the tumours he has in his spine. He will be taking this drug orally everyday for an indefinite amount of time. It could be years. If it works. If he doesn’t react too badly.

If it works, and this tumour stops growing, and Dexter doesn’t get any new tumours, maybe he could lead a normal life…. That is our hope. That is what we have reached out and grabbed on to. That is how we will get through the next month down here.

Bec

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Our Roller Coaster Ride

Life is such a roller coaster, and this week has really reinforced this for us. We spent the last week picking up the pieces after hearing Dexter had missed out on the trial we were so desperate for. But you know what? We were doing ok. Yes, I was exactly as Luke described, heartbroken, feeling like every time we hoped for something we were smacked down again. Deep down I had to believe that this was obviously just not meant to be, something else would have to come along, it just had to.

Then on Friday morning, the phone call came, the good news we were desperate for, Dexter has been blessed with one of 10 spots world wide on the Trametinib Clinical Research Trial. A new Chemotherapy drug that has shown promise in NF Plexiform Tumours by shutting off the MEK nerve pathway to inhibit or even reduce the tumours growth. Yes, it is still so new, there are some terrifying potential side effects, and we are signing Dexter up to an experimental treatment that does have the potential to do him more harm than good… But I know a beautiful family whose son has been receiving the drug for several months now, from the 1st Phase of this trial, and this amazing little boy is thriving, his tumour has shrunk some and the only side effect he has had is that his hair has gone white. I would be ecstatic with those results! Ultimately we feel like we don’t have any other choice, we step up and bravely take the plunge into this treatment that we have to believe will be the change our brave, strong, cheeky little Dexter needs. Finally, something that we can be doing to actually help our angel. Hopefully…

If I am being honest, I really hate how this condition has changed me. I feel like I no longer have the capacity for easy going, relaxed enjoyment. My happiness feels forced, and I fear that I am completely transparent. I have never been very good at disguising my emotions, and am a firm believer in being completely honest, but I just wish I could find a way to push my misery, hopelessness and jealousy away. I hate that I feel this way, I hate that little part of me that felt jealous of my beautiful sister when she had her perfect, beautiful tiny baby boy. I hate that I feel like I haven’t been as supportive for her as she has always been for me. I am so overwhelmingly happy for her, and pray and wish for the healthiest, happiest lives for all of my family and friends. I just wish that I could ensure no one else ever had to endure this kind of torment, that of a sick child, the loss of a child, there isn’t anything I wouldn’t do.

The incredible overwhelming support we have received, financial, emotional, physical, is inspiring! We knew we had truly beautiful and wonderful friends, but the new friends we have been so lucky to have made in the past few months, were so unexpected. We are just so grateful for the generosity, love and support we are surrounded with.

So today is the day Dexie and I fly to Sydney, and I will do whatever I can for my sweet boy to enjoy his time as much as possible, while he endures the first 2 weeks of testing, general anaesthetics, MRIs, MRAs, ECGs, EEGs, ECHOs… the list goes on. Then we will all have our fingers crossed that we will get the green light from these tests that he is able to start treatment in week 3. While Luke stays home and keeps life as normal, and enjoyable as he can for our beautiful, sweet Harrison. My heart will ache for them, I have never been away from Harrison for this long before, but I know that he will be fine, he has his daddy, family and friends around to look after him. Luke has family, and friends to watch out for him, and we have some family and friends in Sydney as well, there are so many things we are grateful for.

So we head into the next couple of months with anxiety, fear, but most of all HOPE. Dexter will make it through the testing and this drug will help him. This is the miracle we have all, every person who has met Dexter, been praying, hoping and wishing for! IT WILL WORK!

Bec

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Can’t Catch a Break...

Through our myriad of Doctors and Specialists here in Brisbane we were able to secure a referral to the Westmead Hospital in Sydney where one of only two NF clinics in Australia is based. This was news that brought a little ray of sunshine into our journey with Dexter…because it was here that we were going to apply to be a part of treatment trial that had so far produced only positive results. Could this be the light at the end of the tunnel? Could this be the treatment that our Dexter desperately needed?

Bec had secured accommodation through Ronald McDonald House, bought us flights to and from Sydney and organised for us to be picked up at the airport by one of the most generous, funny, and genuine people we have ever met. I have to say, whoever came up with Ronald McDonald House is a saint. The service these people provide families with children who need ongoing care is simply amazing. It is within 100 metres of the hospital, staffed 24/7, catered and filled with people who genuinely care. It is also filled with children and their families who desperately need help. These are really sick kids…who are often sporting a smile so wide you’d think their face would crack. If you can support Ronald McDonald House in any way, I can tell you that it is sorely needed and most certainly goes to the right place.

After meeting more specialists, doctors and nurses, Dexter was assessed for his candidacy for entry into the trial. We, obviously, were hopeful. It wasn’t long before the news came back that not only was he a good candidate, but he was a perfect candidate. Every singly specification that the trial needed, Dexter displayed. That little ray of hope had suddenly sparked into a fire. It wasn’t yet raging, but it had caught alight and was burning brightly.

We were told that we would probably hear about whether or not he’d get in by early June. In our minds, that meant just a couple of weeks away. So plans were being made. Bec and Dex would fly down for the eight weeks of tests and preliminary assessments, while Harrison and I would drive down and meet them in Sydney. We’d then leave the car there and fly back…two boys living the high life while Mummy and Dex were in Sydney. Why not? Dex was going to be getting treatment that could, best case scenario, halt the growth of his tumours…even reverse them completely. Life was looking GOOD!

Mid June came and went. Dexter went into hospital to have his adenoids and tonsils removed. He then contracted pneumonia again whilst recovering from his surgery. From his coughing, he developed a small bleed in his throat, that slowly but surely filled his little tummy with blood. When it was full, it all came vomiting back up. I stood there, with my baby boy in my arms, unable to stop the blood spewing forth, thinking that these were his last moments. Rebecca was amazing, talking to emergency services with a clinical precision that I could only marvel at. Since she has said that she can’t remember what she said and what she did. But I do. And I will never forget it.

Dexter ended up being fine. It is a common thing to happen…no less frightening, but still nothing really to worry about. A little more medication and he was good as gold. Not only that, but he is now sleeping so beautifully. Before, it was like a chainsaw was riding a Harley Davidson when he was sleeping. The loudest snore you have ever heard. Now, he is as silent as a mouse stuffed in a pillow filled with sound proof stuffing. He’s so silent that we often have to stand there watching his little chest move, just in case. At least he’s sleeping better now.

Still no news from Sydney. Then I had a car accident. I was alone in the car, thankfully, as it hit right where the boys would have been. I was fine, and so was the other driver, but our little car was a write off.…which therefore left us with only one car. It’s not as easy as it was, but we are making do. At least we were all healthy and that fire of hope, although smouldering now, was still there.

And then came the news…today, 12th of July 2016, that we were beginning to dread, beginning to think was coming…Dexter did NOT make it into the trial.

If we were to look at it objectively, then it makes sense. 10 spots available across 5 countries…one of them being the United States, where the trial originates from. Our chances were slim to none to begin with. But we had hope. It was our only hope. Now that light is gone, and we are once again lost in the darkness.

I watch my wife walk around the house and I can see her heart is broken. Her spirit has taken a beating so very hard that I am at a loss to know how to fix it. I type these words with tears literally falling down my face. How can I be strong for her, for Harrison, for my sweet, beautiful angel Dexter when all I want to do is scream at the world? I feel like I am failing them all. I feel that if only I could do more, but what can I do? I can’t save my son. I can’t heal my wife’s broken heart. Seriously, we just can’t catch a break. But I will rally. I have to. I will be as strong as I can for Bec. I will be the rock she so desperately needs. I will play with Harrison and we shall venture out and search for Pokémon together. I will do EVERYTHING in my power to make sure my Dexter smiles and laughs and lives the life we want him to have for as long as we have him. He is my angel and my beautiful baby boy. And it is his birthday next week…and it will be marvellous. 

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One mother’s struggle to maintain a happy family life when one child has an incurable disease.

Australia’s premier website for women, MamaMia, has published this beautiful piece, written by Bec. Please, take a moment to read and share it.

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Another NF Story...

When we found out about Dexter’s NF, we felt like we were the only ones. The isolation we felt was complete...no light, only uncertainty and despair. Of course, although our journey is only beginning, and it will never end, we are not alone. There are families throughout Australia that share our journey. Some worse, some not. Some desperate, some accepting. 

We soon met another family travelling the NF journey. Their story, the same but different, is here:

Our baby girl was just 9 weeks old when she was diagnosed with an incurable genetic condition called Neurofibromatosis, and in that moment our lives changed forever. I wish I had a few carefully chosen words to describe how that felt, but the truth is that I can't find the words to describe that moment, or that day, or each and every day that's followed since. Perhaps the words just don't exist. Perhaps some things are too devastating to be described accurately. Instead I clearly remember a moment without words. A moment of absolute silence, right before our Paediatrician spoke the words that confirmed it all. It was in that moment of silence, as he stared out the window and tried to find the right words to tell me, that I broke into a million tiny pieces. I saved him from having to say the words, and he passed me the tissues. That moment stole something from me that I will never get back. It stole something that I hadn't even realised I thought was mine - the certainty that my precious baby girl would have a wonderful life. The certainty that she would crawl, walk, run, talk, love us, and be loved by us. The certainty that she was ours to keep.  With her diagnosis I lost the innocence of those early days with my baby. I lost joy, I lost hope, and I lost heart. Without an outlet for my anger I directed it straight at the 'chances' of this happening to her, and I strongly lost faith in the comfort of statistics. A mutation in the NF1 gene occurs spontaneously in 1 in 4000 births, and she was the 1.

The only somewhat comforting thing was that she was too little to remember any of the painful early months after her diagnosis. She has no memory of the tears that fell on her sweet little head as I breastfed her, or of the many words fiercely whispered to her in the dark of the night; words of grief and fear and apology. Mummy whispering 'I'm so sorry' over and over again until it resembled the soothing shush shush sounds I should have been whispering. Because, what Mummy wouldn't feel it was her fault? She won't remember the doctors first shocking explanations, the questions, the tears. She won't remember that Mummy couldn't get up, couldn't breathe, couldn't leave the hospital car park. And for all that, if nothing else, I am grateful.

Neurofibromatosis is a progressive and degenerative condition that causes tumours to grow throughout the body, primarily in the central nervous system, the brain, spine and optic nerve, as well as in numerous other places. It knows no boundaries, has no limitations, and, to date, no cure. lt causes disfigurement, cancer, nerve pain, learning difficulties, developmental delays, poor muscle tone, broken bones, broken hearts and broken lives. It can cause all these things or a few of these things, either mildly or severely. Our beautiful girl is affected in some of the more uncommon ways. Of those 1 in 4000, she was within the 1% that develop lesions (small flat tumours) on the surface of her beautiful blue eyes before the age of 1, she has high blood pressure, and mild renal arterial stenosis, and it has been suggested that we need to watch her for an uncommon arterial manifestation that causes stokes and brain hemorrhages. We don't know what tomorrow holds, and while it has been said to me many times by well meaning people that nobody knows what tomorrow holds, I think you'll agree with me that this is a little different. We don't know if her bones will begin to shatter as she learns to run and jump and be a carefree child. We hold our breath if she loses her balance, loses weight, gains too much weight, grows too quickly, or too slowly. She is checked regularly for optic nerve gliomas, potentially leading to blindness, and brain tumours that require surgery and chemotherapy. In all likelihood she will develop several of these tumours, as well as spinal tumours that cause immense pain and could impact on the ability to walk or on the function of organs. On another level, there is the fear that her beautiful body will be disfigured by rapidly growing tumours that are inoperable, and that those tumours will rob her of her confidence and her belief in her own gorgeousness. These are the worries that parents of children with NF carry around with them every single day. So you'll forgive me for saying that it's not quite the same thing. While other parents watch their children with joy, our joy will forever be intertwined with fear.  

More than 12 months down the track our girl is thriving, in spite of her diagnosis. We know her now, who she is and what she loves, what makes her laugh, and we know who we're fighting for. She has started talking and is such a bright and clever girl. She is truly our NF Hero and was born with bucketloads of strength and resilience that will serve her well. As a family we've continued on and she is totally adored by her two older brothers. As a Mummy I've found my new normal and have tapped into a resilience I didn't know I had, and the joy certainly outweighs the sad. It's the days where we have specialist appointments that are truly challenging. But here we are, and I feel endlessly grateful for the blessing of our girl, NF and all.

May is NF Awareness Month, and for families like ours the significance of this month is immense. May is the month that we ask you to notice the struggle and to join us in the fight to #EndNF. Without awareness there can be no funding. The funding we need allows lifesaving clinical trials to be conducted and research to be continued.  And research is the only hope for many children and adults suffering from NF, and their families, for better treatment options, and one day potentially to find a cure. I can only imagine how it would feel to tell our darling girl one day that she used to have NF. To donate towards NF research please visit: https://heroix.everydayhero.com.au/event/donate-childrenstumourfoundation/donate

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Did you know...

‪There are more Australian’s suffering from Neurofibromatosis than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease COMBINED? And yet so few people know about NF. There is no cure. Please, help us find one. May is NF Awareness Month.

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Another great story about our NF journey. This one in the Southern Star - a Quest newspaper. This one includes quotes from Bec, Dexter’s aunty Casey as well as the CEO of the Children’s Tumour Foundation of Australia - with excellent detail of what NF is.

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Feeling the love...

Dexter and I were invited to our first fundraising event on Friday, that was set up for Dexter by a lovely, kind and generous friend, Sarah Barker. We spent our lunchtime socialising with the wonderful staff of Integria Healthcare Australia, enjoying a sausage sizzle and some fabulous company. Integria and all the staff at the Brisbane office, showered us with kindness and generosity. 

We have been completely overwhelmed by the outpouring of support, both financial and emotional, from so many kind, and generous friends, family and strangers. There is no way that we can convey just how grateful we are to all who have donated, or shared Dexter’s story to help us get the word out about Neurofibromatosis. So we just want to say a massive THANK YOU from the bottom of our hearts, with a special “Ta” from sweet Dexter. 

Bec

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13th March 2016…3:45pm

Since Dex had his second MRI, both Bec and I were on edge. The appointment was moved forward but it still wasn’t soon enough. The last time we were in this position our whole world was turned upside down. What were we going to be told? Were we again going to be thrust into a position where we could only observe the ordeal our baby boy was going through…or could it even be worse?

In many ways, I have it easier than Bec. I have the escape of work. Harrison has the escape of school. Bec has no escape. Now sure, I worry about my boy all day every day. I worry about my whole family all day every day…but by the nature of work, there are times when my attention shifts momentarily away from my troubles, and I can focus 100% upon the task that is set in front of me. It gives me some respite from what is a life that is filled with a level of uncertainty that is equal parts fear and frustration. But this is not the case for Bec. She lives with NF day in and day out. She loses sleep, and struggles with her fears and anxiety every single second of every single day. She can’t take a break, because as Dexter’s mother, she does not allow herself to. She’s no martyr, and she seeks no sympathy in her life. She has accepted her responsibility and I am profoundly proud of everything she does. But for her, there is no respite.

Rebecca hardly slept between the MRI and the day we received the results. She chased down the report and was rewarded for her persistence with an early appointment with our Neurosurgeon. This is a man who told us how it was, straight down the line, and showed genuine interest in all aspects of Dexter’s care. But what did he say?

We know that Dexter’s tumours will continue to grow, unchecked, throughout his head, throat and spine. We have come to accept this. We also know that there is no treatment for this condition and that every single day brings with it something new and frightening. This is our life. So we prepared ourselves for the worst, not knowing what the worst could possibly be.

Moderate growth with no extension into new areas. No change to the ‘Unidentified Bright Objects’. Minor growth to his spinal tumours. No new tumours.

Would you believe that this news was the best news we could have ever received? The absurdity of hearing that your child’s tumours that infiltrate the entirety of the right side of his head and throat has grown a moderate amount, rather than no growth at all or the miracle that would be a reduction, is not lost upon us. We know it sounds bonkers…but we were truly happy to hear this. It was the best news we could hope for. It was news that said we were still in the grey…the area of watchfulness, but not yet at red alert. He was doing ok. He is doing ok.

And that night…Bec slept.

Luke.

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I was in denial for the longest time. Whenever my sister voiced her concerns to me about my baby nephews health I would immediately jump to placate her – “I’m sure it’ll be nothing”, “just try and wait for the test results, I’m sure it will all be fine”. Honestly, I don’t think that I had, even for a minute, contemplated that something might really truly be seriously wrong. It’s not that I didn’t trust my sister’s intuition, it’s just that I couldn’t conceive that something truly terrible could happen to us. Not to our family. You never think it will happen to you… until it does I guess. The terrible thing did happen. And we’ve been waiting to wake up from the nightmare ever since. Six months ago, my then 15-month-old nephew Dexter underwent an MRI, which would show a large tumor growing on the right side of his head (between his brain and skull, and through his face) and other smaller tumors growing along his spine. My sister’s fears were confirmed: Dexter has a condition known at Neurofibromatosis. A condition without cure and without treatment options. Not cancer – the tumors are usually benign - but a condition that would impact his life just as seriously. It would take months and more appointments with various doctors and specialists before we would begin to understand what the diagnosis would mean. The one question still tearing at our hearts is one none of us have been brave enough to ask: is it a death sentence? We don’t know. Which may be the only thing worse. Each of us is dealing with the news, this alternate reality, in our own way. Obviously for my sister and brother-in-law, the burden is heaviest. Trying to understand how the diagnosis will continue to change their lives, while trying to maintain a normal, happy childhood for their two boys. My parents – Dexter’s grandparents – trying to provide any and all support that they can. My brother babysits and is able to spend quality time with his nephews. For me, being a whole ocean away, finding ways to help are that much more difficult. None of us feel as though we are doing enough. But the frustrating part is there is so little we can actually, physically do. I fell pregnant around the time Bec and Luke were receiving the worst news of their lives. A moment of joy for my little family, was a moment of pure fear for my sister’s little family. Hello, Guilt. As I’m undergoing routine blood tests to determine the health of my baby, my sister is discovering that Dexter’s condition is a spontaneous mutation - there was no way to have known Dexter had this condition in-utero without invasive tests - and no reason for me to fear our child would also have it… but, Hello, Fear. Sadness. Anger. Frustration. Guilt. Helplessness. Hope. Fear. Love. There is a broad spectrum of emotions at play. We keep propping ourselves up with Hope. It’s almost the only thing we have. Hope and Community. The love and support Bec and Luke, Harry and Dex – and the whole family – have received from family, friends and absolute strangers, is incredible. So many ask how they can help. There are two ways you can: 1. You can spread awareness of NF. Share facebook posts, links to Dexter’s Tales blog, talk to your family and friends about NF. In this way we hope to bring NF into a more public forum, increase research funding, and one day find a cure. 2. Donate to the Go Fund Me account (https://www.gofundme.com/7hxtjz44) I’ve set up for the family. $5. $50. $500. Whatever you can manage. Every little bit helps. We could never truly express our gratitude for your generosity - thank you! Please, continue to send your love, thoughts, prayers, and hope for Dexter. We need it.

Did you see the blog post Dexter’s aunt Casey wrote? Pop over to her blog to check it out. It’s all about how the wider family are part of the journey with us.