Dear #sqlfamily

rare_smile

This was the first time Lucy (and her brother smiled) after the first few days of treatment (in which she was constantly vomiting). A charity had come into the hospital to let the kids play with their video editing software. It was the first time that Mummy and Daddy felt hopeful

I would first like to apologise for the time it has taken for me to write this open letter to #sqlfamily in response to the rather incredible and slightly bewildering response to Steve Jones’s first #sqlwish initiative.

I would also like to extend a special thank you to Steve (t|w) and Karla (Landrum) (t|w) who are the primary reasons why my family was recently  blessed with your goodwill (and donations) to send my daughter on a trip of a lifetime to Disney World.

As I understand it, my name had originally cropped up in a conversation between Karla and Steve in which she mentioned that if she ever won the Lottery there was a small handful of people she would pay to visit Disney World (of which my family was one of them). Steve Jones’s response was a surprising “why wait” and the rest as they say is history. You can read Steve’s original post here.

Only Karla and a very (very) small handful of people in the SQL Server Community had known about my daughter Lucy’s health problems and my families struggles with it over the last couple of years (mostly out of necessity) due to my various community commitments. Despite my (perhaps) gregarious outward appearances, I am actually a very private person and tend not to talk about my private life (even to my close friends), so the chances are that if you know me, I didn’t tell you either -and for that I am sorry.

My way of dealing with painful or difficult times is normally to keep things to myself, so I have never felt like I wanted to discuss my problems through social media or share my pain with others (although I know others find comfort from doing so). So for that reason, when I was asked for permission by Steve to launch the #sqlwish campaign I was certainly conflicted about saying yes but decided it was unfair to deprive my daughter of the opportunity of a lifetime just because of my own personal issues when she had gone through so much. I was also conflicted because, despite the hardships we have all faced, we have witnessed other families going through even more painful situations and challenges. Why is it fair that we get something good out of this when they may not? The only way I can reconcile any of this is to try dedicate myself to finding a way of giving back to the system and to those affected as a life-long goal and that is work in progress….


Due to the overwhelming and unexpected public response I think that the least you deserve is to hear our story so here it is…

 
It was during the early Summer months when I first started to think something might be seriously wrong with our daughter’s health and my wife had been taking her to the doctors for months and months saying something was not quite right, but each visit was simply put down as growing aches and pains.

In 2013, leading up to those Summer months, Lucy had developed a serious pain around her knee and could not unbend her leg. After lots of rubbing, hot water bottles and general parental panicking she managed to straighten her leg but her wrist was also causing her problems. After several more visits the doctors, the response was the same “these things are common in growing children” and “parents worry, but this really isn’t something to worry about” and so on. We were not so sure and continued to worry.

Several weeks earlier I had booked short holiday for my wife and kids (without me) since I was going through a very busy period at work but wanted them to still have a break during their school holidays. As the days approached, Lucy’s aches and pains appeared to improve slightly so the decision was taken for them all to go ahead with the scheduled break. Something I came to regret (and still hate myself for to this day) was to continue resolving serious technical problems at work whilst they holidayed together, despite my gut feeling which was telling me to go with them. I will never put work ahead of family again.

They had a good time during their holiday but on the very last day, I received a call from my wife that they were heading to the hospital and to meet them there. Lucy’s aches and pains had returned with a vengeance and by now my daughter was looking white as a sheet. After a distressing and painful night for us all, Lucy was diagnosed with Acute Lymphoblastic Leukemia and my world felt like it had come to an end. The good news was that this condition was treatable but the bad news was that treatment would be hard, could affect her health in other ways throughout her life and would last for just over two years.

Treatment has been very very difficult for all of us, and my wife and I have spent more time in and out of hospitals than we care to remember. The second my daughter’s temperature ever touched 38 degrees would result in Lucy spending several days in semi-isolation in hospital together with her mum.

And during all this time, Lucy (and we) had to contend with the loss of her Nanny AND Great-Nanny to Cancer with the knowledge that she was also going through treatment herself and the inevitable fears and questions that the failure of their treatment could mean for her own. The emotional loss of two of the most headstrong, determined and resilient people I have ever known was really tough, but still having to battle through this was too much. Quite frankly, I don’t know how she, my wife or my son managed to get through these difficult times and come out of the other side but they have.

Me getting stuck in the hospital playground caused great amusement to my entire family. Rather than help me out they took time to take a photo!

Me getting stuck in the hospital playground caused great amusement to my entire family. Rather than help me out they took time to take a photo!

Credit to them all that despite our difficulties, they have allowed me to continue my SQL Server Community participation almost unhindered. And as much as I love helping others (as I hope is evident to those who know me), there is a part of me that feels (and knows) it was selfish of me for doing so. Perhaps I was trying to escape to a level of normality and bury my head that everything was going to be OK, but whatever the reason I thank them for allowing me to do it. Most incredible was our successful execution of two SQL Saturday (Cambridge) events during this period (and the first one several months after diagnosis). My wife bears a huge amount of credit for all the work she contributed to those events and also to my family’s care. I can only be credited for my insanity of wanting to do them.

Our lives revolved around treatment and perhaps my involvement with the community has helped focus our attention on other things whilst we faced difficult times together. While the last couple of months have been insanely hard with potential health scares (as a result of the prolonged medication), I am pleased to say that Lucy has now recently entered remission which will last into her early adulthood. We are now looking towards a brighter future and I cannot wait to tell her what you all have done for her in sending her to Disney World to experience a holiday of a lifetime (which we are hoping to do early in 2016).

Thanks again, and I we love you all!

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10 Responses to Dear #sqlfamily

  1. >> Lucy has now recently entered remission which will last into her early adulthood
    I like a story with a happy ending! 🙂

  2. Neil Hambly says:

    Mark, Thank you for sharing your story, I hope that your family has the wonderful experience that a Disney experience will bring.
    Your passion and commitment to your family and the #sqlfamily is inspirational, I feel so fortunate I’ve known you these past years and spent time with you at many sql events, I look forward to many more as any time we do meet is a good day.
    Neil

  3. Prathy says:

    Thanks for sharing your story. I feel so small compared to you. I can understand how difficult it is to see our children in pain – I am sure she will get better. Thinking of you and your family!

    Prathy

  4. Mark Hayter says:

    HI Mark…I can’t even imagine what your whole family have been through….I’m so glad that Lucy is in remission and she has this wonderful disney holiday to look forward to. I’m also glad they took a pic of you stuck in the playground….definitely cheered me up after reading your story. All the best and I hope you and your amazing family have a great xmas.

  5. justdaveinfo says:

    Hi Mark, Glad to hear things are looking brighter, xmas coming up and disneyland to look forward to as well. Thanks for sharing your story with us, sometimes we forget that the whole world is not just work and how trivial our daily ‘problems’ really are. Love the photo of your children, and you!
    David.

  6. JudeK says:

    Hey there John, wishing you and yours a wonderful Christmas and New Year along with many years of joyful remission.
    Jude x

  7. alzdba says:

    Wet eyes of happiness, reading this story. Glad you and your family got through these hard times.
    Every once in a while, good comes to those who do good.
    Two new stars on the sky to remind you all, for strong persons they have been.
    Have a wonderful Christmas and a prosperous 2016.

  8. Chris Testa-O'Neill says:

    Mark. Thank you for sharing and I really hope that you all enter a great phase of your life. All the best from the Testa-O’Neill’s

  9. Only now I heard about that. I wish you and your family all the best for the future and hope it will all work out.

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