Monday 20th September 2021

Women of Courage Series. #68 Gloria Hill. 101/2021.

Women of Courage Series. #68 Gloria Hill. 101/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

 

I may not have (yet) met Gloria Hill, aged 48, but I already am very aware of her role and input as a parent into the very newest public school which opened in 2019. This is North Kellyville Public School, and I am a proud retired principal who continues to support public education in N.S.W. Our daughter is the teacher/librarian there, becoming foundation year staff member, and I recall seeing the many positive and amazing projects which the foundation year Parents and Citizens group (P&C) initiated. To that end, Gloria, as the 2019 P&C Secretary and later as the 2020 P&C President was nominated for the 2020 NSW P&C Federation Volunteer of the Year Award, and was one of 16 Finalists after winning the North West Sydney Electorate. Thank you Gloria for sharing your story with us. At the foot of this post is information from Gloria.

 

What have you faced in your life where you have had to be courageous?

In 2012, my son Sean was diagnosed with a genetic disease at the age of 12 months.

  • The disease is called Severe Combined Immunodeficiency (SCID) and people born with this disease are effectively born without an immune system.
  • Most undiagnosed cases do not survive infancy.
  • I was not aware I was a carrier of this glitchy gene, nor that I had passed it on to my son.

As a first-time mum, I did not know why my little man would take weeks to get over a cold, or why a small nappy rash would leave his entire bottom a red raw open weeping wound for days on end.

That first year was spent advocating for my son with various medical professionals – we got to know our GP and our early childhood nurses very well, to the point where one medical professional noted the frequency with which we were visiting the doctors’ surgery and flippantly told us we should be earning frequent flyer points for all of our visits.

For his many ailments, Sean was prescribed every potion and lotion available from our local pharmacy, but there would still be extended periods of ill health between the bright and happy days.

After many months of bashing down the doors of various doctors, a chance meeting with an early childhood nurse fast tracked the diagnosis when she insisted that Sean be seen by a paediatrician immediately.

  • In the space of 2 hours, we went from being just a number in a queue to Patient #1 at the Sydney Children’s Hospital Randwick.
  • The diagnosis came quickly, and the treatment plan followed – we would have to consent to chemotherapy and a bone marrow/stem cells transplant to save Sean’s life.
  •  He was 13 months old, my first and only child, and my husband and I sat through all the medical scenarios and diseases Sean may develop post transplant, all of the scenarios ended with “if this disease developed, then Sean may die”.
  • The bone crunching, soul destroying scenario was presented last – if we did not consent to the transplant, then Sean will die.

 

On 27 March 2012, a specialist team performed a miracle by transfusing 30mL of precious stem cells into Sean’s little body.

  • Over the next 5 weeks, we watched Sean’s condition worsen before he got better.
  • In a comparatively short period of time time, Sean’s body recovered from the treatments as the stem cells grafted in his body and he grew stronger by the day.
  • We were discharged from the hospital in May 2012 when the real fun awaited: a lengthy period of self-isolation with an inquisitive toddler quarantined in a small house while trying to manage weekly hospital check ups, the complicated medication schedule, the new diet (both liquid and solid), and the upkeep of his medical accessories (nasogastric tube and central line) tested my patience.

 

By the end of 2012, all the hard work paid off.

Sean was weaned off all medication, and all of his medical accessories were removed.  Sean’s appetite returned and he was thriving again hitting all of the growth milestones with ease.  The weekly clinics at hospital turned into monthly visits, and by the end of 2013, the visits would become an annual check up.

Today, 9 years since the transplant, Sean is a healthy 10 year old who loves to swim, ride his bike, and read, with a healthy appetite and an even brighter outlook on life.

 

How did this change you in any way? Please outline further if this has been the case.

I learned to trust my gut instincts and not back down, especially when I am advocating for my family and my loved ones.

I learned to look for silver linings, because the alternative was too sad.

I learned to show my vulnerability and accept help in all the different ways that were offered to us.

I learned to take a deep breath and push on – sometimes, it just IS what it is, and I have to get on with it, because there is no other option available.

 

Is there something you learned from this that you could recommend to help others who need courage?

Lean on those you trust.

Some friendships will grow and transform to the next level.

Expect to lose friends and see friendships shift – you may be surprised by who “slip away” and bow out of your life, but don’t begrudge their departure.

They are not bad people; they just don’t know how to support you.

You are not alone.

AND you don’t have to do this alone.

There is help and support available, everywhere.

Never be afraid to reach out for help.

And if help comes to you, accept it.

You are not weaker by seeking or accepting help – in fact, you are the stronger and more courageous one for seeking or accepting help.

Specifically to a medical condition: listen to the professionals – if they tell you not to Google the disease, then don’t Google the disease, especially at 3am when you can’t sleep.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I don’t think I could be more courageous now than I was then.

In 2012, just after diagnosis, we found ourselves “shedding friends” – people who called to check in on us, but then picked fights with us over trivial matters.

The drama that some of these former friends created at the time distracted us from the real focus at hand – the life and health of our critically ill little boy.

In hindsight, I came to realise that these people may not have been strong enough to support us, nor knew how to support, nor knew how to react to the news.

Whilst it was disappointing at the time, the loss of these relationships was actually to our benefit.

At the same time, our true friends stepped up and found innovative ways to support us.

Financial donations flooded in from well meaning friends who wanted to make sure my husband and I were fed during our hospital stay and we had money for petrol to get to and from the hospital.

Friends cooked us meals, took us out for quick meals (just so we would leave the hospital room and get some fresh air), and called and messaged us to get up to date news on Sean.

We still have the same loving network of family and friends who rallied around me then, so if I had to face the situation now, I know I have the support and love to get through it.

 

Is there any message you would give to others facing a situation where courage could be needed?

You are not alone.

You don’t have to do this alone.

And asking for help is not a failure.

To ask for help is a sign of strength, so reach out to family and friends, and lean on them.

 

Thank you Gloria. I feel it is such an hnour for people like, and all the women who decide to share their stories, that this is a place here on my blog to do so. I am in awe of your strength as you were learning to be a mum too. I do hope all continues to go well for you and your family.

Denyse.

 

Social Media:

Twitter: https://twitter.com/Oh_Glorious_One

Instagram:  https://www.instagram.com/oh_glorious_one/

Information supplied by Gloria which I am very pleased to be able to share…awareness is always an important factor in any health conditions. Thank you.

Since Sean’s diagnosis, I have discovered the Immune Deficiency Foundation Australia’s Facebook page (https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/) and their private group (https://www.facebook.com/groups/217875418231666).  IDFA have provided a fantastic platform for people with Primary Immune Diseases to share knowledge and information and to provide support to each other.
As a point of interest – if anyone is keen to find out more about our involvement with Inner Wheel Australia.  The treatment plan devised by our Oncology and Immunology teams at the Sydney Children’s Hospital involved a stem cell transplant.  Sean received the transplant using stem cells extracted from cord blood, and in the ensuing years, we have been involved with Inner Wheel Australia as Ambassadors for their National Project in Cord Blood Research (https://www.innerwheelaustralia.org.au/national-project).  I have been a keynote speaker at various conferences, and Sean is the face of their national fundraising campaign called “Sean’s Two For Ten”.  The annual campaign was launched this year, and we have agreed to be the face of the campaign for the next 6 years (until Sean is 16).

 

Joining with Natalie here for Weekend Coffee Share.

Copyright © 2021 denysewhelan.com.au – All rights reserved.

 

 

 

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Comments

  1. Thank you, Denyse, for the opportunity to share a time in my life that changed me forever.

  2. Lovely to read your story Gloria. Sean is very lucky to have your strength and determination to get through the difficult times. Things that come from your genetic makeup also. My daughter was 7 when we were told that she had a genetic condition called NCCAH, passed on when both parents are carriers. It came out of the blue and we knew nothing about it. The tricky part is that many medical professionals know little about it also. Our 2 other children were fine. This was such a shock to us all and something we continue to learn about as she grows older. I know the feelings and courage that you faced and the fear that was never far away. Your strength is enormous. Such a difficult time to be the brave face, the advocate and the support your child needs and to face the fact that others aren’t always capable of supporting you in return. I am glad that you found out the people you could rely on. The Sydney Children’s Hospital is just amazing. Your courage to continue to advocate for your son through those extremely difficult times is immense and it’s mind boggling to see just how much strength and courage can be found when it involves the things most precious – our children. Thanks for sharing.

    • Thank you Jacqui for your comment, where I see that you and Gloria do have quite a bit in common too. I am sure Gloria will be interested in your words too.

      Denyse.

      • Thanks Denyse … this was my ‘other’ story that I first started to tell … but changed my mind. Very much the reason why I am in awe of my daughters courage!

    • Thank you for taking the time to read my story, Jacqui. Rare genetic diseases make for interesting times, that’s for sure, especially when you have no experience with the disease and the health impacts the disease has on your child who has the “full version”. I still have those conflicting and confusing feelings of guilt that I am an X-SCID carrier and the pain and suffering this glitchy gene has inflicted on my beloved Sean – I don’t think I’ll ever stop feeling those gnawing feelings, even though a small but firm voice in my head continues to tell me “it’s not your fault – you didn’t know”. Sean is so brave and strong – he was as a baby, throughout treatment and recovery, and every day since diagnosis, and I am very lucky to have this wonderful boy in my life, from whom I often draw courage.

  3. Oh wow, what a story Denyse and Gloria. I’m so glad to hear things have gone well for your son but what a harrowing time it would have been. I like your thoughts – you are not alone, so very true!

    My family has discovered a genetic issue with the birth of my grandson and that has resulted in family members being tested and counselled and now my husband and two of my three daughters have been found to have the same gene, plus my grandson and maybe other grandchildren, we’re not sure yet. The long term prognosis is unknown at this stage but at the moment he is doing well. As my daughter is interstate and Covid has been raging since he was born last year it’s not been an easy time for any of us, she has needed support and I’ve not been able to visit. We are into looking for the silver linings too!

    Thanks Denyse, for sharing this amazing story and another wonderful woman of courage.

    • Thank you Debbie, of course this story would have sounded somewhat familiar in some ways. I do hope, the medical science and testing genetically can bring you more information. I have been feeling for you and the families concerned so much in Covid.

      I hope Gloria sees your comment too.

      Denyse.

    • Thank you for taking the time to read my story, Debbie. I can certainly sympathise with the feelings of helplessness in the early days of diagnosis – the numbness, the sense of being adrift, and the hundreds of questions all falling into the “and now what” basket. Add the uncertainty of the pandemic restrictions and that feeling just increases. I hope your grandson (and your family) have a fantastic medical team available to support you through these trying times – I’m glad your grandson is doing well and I hope he continues to do well. Sending you love and positive thoughts.

  4. OH wow! What a courageous family and I was so relieved to hear how well Sean is doing now. I did have to laugh at the suggestion to follow advice like not Google the disease… as I often DO google any sort of medical diagnosis and the results are always so overwhelming and then spend hours reminding myself the doctors don’t seemed panicked so I probably don’t need to be either.

    • Thanks Joanne, that Google is a blessing and a curse! I find I need to leave it alone more than go to it now for peace of mind.

      Take care,

      Denyse.

    • Thank you for taking the time to read my story, Joanne. In line with Denyse’s sentiments, Dr Google is definitely a blessing and a curse. I can still remember Dr Gray’s gentle voice firmly telling me to NOT spend any time on Google, looking up information on SCID on the day we received Sean’s diagnosis. As soon as those words were out of Dr Gray’s mouth, my head said “Oh, we are DEFINITELY Googling that!” And I did. At 3am. And I filled 6 pages in my notebook with questions after reading what turned out to be the worst case scenarios, and most of the articles and studies were written by overseas researchers. Dr Gray and his team as well as my husband then spent the next week undoing all of the dread in my head. I highly recommend listening to the medical team and only turn to Google if this is recommended by the doctors.

      Another story for another time – Sean was very nearly an only child, given the circumstances.
      We only moved ahead to try for a 2nd child after undergoing a lot of genetic counselling. Sean’s younger brother Henry was a result of IVF and Pre-Implantation Genetic Diagnosis (PGD). Oh, yeah, don’t Google this. 🙂

  5. Hello and thank you Gloria for sharing your story. I’m glad to hear Sean is healthy and thriving. You’re very strong to go through such stressful time. Thank you Denyse for linking up with #weekendcoffeeshare.

    • Thanks so much Natalie. Gloria’s story is one of immense courage and of the ways in which parents do not tend to give up without following through!! In this case, big time.

      Denyse.

    • Thank you for taking the time to read my story, Natalie. You’ll be pleased to know that Sean is fairly indestructible – he’s a clumsy kid with long long limbs and is often tripping over his own feet – we joke that he can still trip himself over even if he was sitting on the ground with both his legs tucked underneath him. I used to be so worried about the little bumps and scrapes on Sean, but soon learned that I’d rather see the “Little Boy Bumps and Scrapes” because he’s an active kid, rather than pristine skin because he’s feeling poorly and inside all the time.

  6. Amazing story Gloria and Denyse – thanks for sharing it.
    As a dad of three, we had no medical issues that compared with this and I hope/pray that I could have been this strong for my kids.
    Congrats on being able to sit back and watch as a healthy young man stretches out to take on the world.

    • Thanks so much Gary. I have this theory now based on experience and practice…we never know what we can handle until we may have to. It’s helped me greatly to know that once I got cancer and i never stray from the notion.

      I hope Gloria gets to read your kind words too.

      Denyse.

    • Thank you for taking the time to read my story, Gary. I will be honest with you – I didn’t feel very courageous or strong – I felt useless and guilty that I didn’t push even harder for my son, to get more answers or seek more help. Call it gut instinct or “tingly spidey sense”, I just knew there was something wrong, even after being told by nearly a dozen doctors and specialisits that “there’s nothing wrong – you’re an inexperienced first time mum – come back if the symptoms don’t away”, but after each deflection, I would question whether it WAS all in my head. I can never fully express how thankful we are to our beautiful guardian angel Margot, whose immediate action and fast talking got us in to see a paediatric specialist who fast-tracked our admission at Sydney Kids.

      I’m sure that if your babies were ever in danger, the Papa Bear within you will pounce forward and protect your kids at all cost. 🙂

  7. Such a terrible diagnosis to have to face with a baby. The treatment would be scary as well but it is so good that Sean pulled through it all.

    • Indeed it would have been Deborah I agree. Good to know how well he is now.

      Thank you so much.

      Denyse.

    • Thank you for taking the time to read my story, Deborah. The day we met with the Oncology and Immunology Teams to go through the treatment plan will forever be one of the darkest days in our lives. Sean, Jonathan (my husband) and I were sat in the small meeting room with our doctors, clinical nurse consultant, and social worker, and over the course of the next 2 hours, the doctors stepped us through “the big talk”. I can still recall the walls of the room closing in on me as more words were spoken, and at one point, I actually saw words flying out of our doctor’s mouth, words with razor sharp edges that cut me and hurt me as the words hit my face. While we were receiving the information, Sean was happily and busily tearing the meeting room apart, playing with all the toys, climbing up and down the foot stool, climbing in and out of the toy box, and generally being active and inquisitive. The heart wrenching, heartbreaking paradox of this full of life little boy and his life threatening disease was not lost on anyone in the room.

      There will be other “big talks” further down the track, which will most likely involve genetic counsellors who will need to step Sean through what SCID means for him and his future offsprings. Not something we need to worry about immediately, but it is something for all of us to work through later down the track.

      • Gloria, I hope that re-telling how it was (and I can hear the ways in which it affected you so strongly) I send my best to you. I also hope this has not been too triggering for you.

        Take care,

        Denyse.

        • Denyse, I have actually enjoyed this trip down memory lane. Today Me is so proud of 2012 Me – that scared, confused, and sometimes angry Momma Bear whose endless questions must have made all the medical staff roll their eyes every time I had a new question. I am forever indebted to all the wonderful staff at the Sydney Children’s Hospital for looking after us (and those who we still see annually) – no question was ever considered a “dumb question” and they always treated us with so much love, care and respect.

          Knowing that we lived through those dark, awful hours/days/months and came out the other side stronger and wiser, I know we can tap into our reserves to build on our strength and mettle through these trying times with COVID restrictions.

          • I am glad that you can (and do!) draw strength and courage like that from this experience…that has continued and onward as life with Sean takes you.

            In sharing the words, I have found too, telling my head and neck cancer story, I get to remember how it was and how far I have come too.

            Hope today wasn’t too bad back at The Academy!!

            Denyse

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