Tuesday, 1 September 2015


As I type this my son sits upright in his crib, mouth agape, desperate for air.

He sways, nearly unconscious from the morphine. His eyes are mere slits. But every time I say it's bedtime, he sits back up, tugs on his shirt and grunts a bit.

He doesn't want to lay down. But I think it's time.

You expected a post about another magical day here in Florida. So did we. But when he woke up his oxygen readings told a different story.

We increased the oxygen rate. Doubled it. Tripled it. He kept slipping. We called an ambulance.

In the ambulance he started to turn blue. We diverted to a hospital closer than the Arnold Palmer Children's to get him stabilized.

So ill-prepared to handle a complex case like Dom was the first hospital that Trish drew blood from his broviac line to be tested. She had never done it but still had way more knowledge and confidence than the staff there.

Meanwhile I called Blue Cross. So much for them not paying for his care during our wish trip. Unlike the clinic visits this was unplanned.

Arnold Palmer sent a second ambulance to get him to their ICU. We got settled and even got him feeling better.

The oncologist from Monday's clinic visit dropped by. Suddenly it was a dance party, Dom leading the way.

Ten minutes later he turned blue again. The doctor said this is it. An X-ray, he said, suggested the leukemia blasts are in his lungs and there's nothing else we can do.

Trish and I fell apart. We agreed to morphine, held him, told him how much he is loved not just by us but by so many others. How he's changed us for the better and how we are so glad he was in our lives. And we sobbed.

We've known this will happen for a long time. But you're never prepared. And this was so sudden. Just yesterday he did so well! And now our worst fears are realized, so far from home.

He didn't die tonight after all. The morohine allowed his stressed body to relax and get enough oxygen to hang on. 

But who knows what's in store for tomorrow.

After more morphine he's now in my arms as we lay back in a recliner. His oxygen requirements remain triple what they were last night.

The oncologist gave us one last hope; his lungs might be overloaded with fluids from transfusions. So he prescribed a diuretic.

It's better than no hope at all.


  1. There are no words that can describe what I felt when I read this post.
    All that can be said is wishes, hopes, and mighty mighty prayers everything goes ok. We are all sending you wishes of hope, strength, Grace, and God.
    I will be saying a prayer this evening for your whole family.

  2. no.... :( I am praying for you all tonight, hang in there little man, hang in there mommy and daddy, you are in my thoughts!

  3. Praying for your family!!

  4. Sean and Trish, I am so sorry. I will pray that things stabilize and you bring Dom home with a smile on his face.

    I don't want to give false hope - I know the fluid is a real possibility.

    You have so many people with you in their hearts, loving and supporting you. Sean and Trish, you are deeply loved by many.

    I am sure many join me in doing whatever can be done from a distance - prayers, wishes, positive intentions and thoughts - for a safe trip home.

    You are loved and supported, regardless of what path this journey takes you.

    Love Lorna

  5. Not a good post, I'm almost frantic with breathing myself reading this. Can you get back to Canada? Even if to Toronto ? (sorry, I don't know what all is covered by wish trip or not, I don't mean that to be super down, but you don't need a USA bill). Keep in contact with ACH?

    ... in the mean time take all our love and prayers and whatever the heck else we can send in this blog, all of it to you both to be strong, extra strong this time, you have an amazing love that will help carry you through. And always, Dominic is amazing, no matter what happens, he always will be that. Yesterday was an amazing gift and made my heart very happy, the past few days have been wonderful, the past several months have been some you never thought you would have. I am saying a teary eyed sorry, but will hold on to hope of course.

    1. I've reached out to someone I know that works along side with Make-a-wish. No promises but don't what I can do to help

  6. Dom please guide your parents. Only you truly know what tomorrow brings.
    Sending all my energy your way Trish and Sean and Dom.
    Fight buddy. Please fight.
    You are all in our thoughts.

  7. I don't know you or understand what your going through but I will pray for you and think about your family. The power of hope and prayer.

  8. This post broke my heart, a tear as a read it! Stay strong guys, so much love here as we have said so many times for you all. Pray hard and know that it is in Gods hands and that you are amazing people for having Dominic in your lives for however long you are lucky enough to. Bless you all, we're praying for a good night and a good news tomorrow!

  9. Heard of Dom from a family in Canada, and I've been reading your blogs ever since. I can't imagine what the family has been going thru let alone what Dom is experiencing. Know that there is a village of people sending their prayers prayig for strength and peace as you face this life journey. May you continue to fight this disease, never give up. Hugs!

  10. I just saw this post on FB and want you to know that you are in my thoughts and prayers.I can not imagine being in your position but Sean and Trish you are amazing parents with a truly astounding son. I send you much love and comfort.


  11. Sending you love, strength and support. I have no words, but hold your family in my heart and my thoughts.

  12. Sending lots of love and positive thoughts! Dom, you are amazing! - from your fans, Tara & Derek

  13. I am so sorry. I am sending my love, strength and most of all prayers that you have more time with this remarkable little boy. There are so many people that hold little Dominic and Mom and Dad in their hearts. With much hope and love,

  14. Please know there are so very many of us praying for all three of you right now. Sending all of the strength, love, support and comfort this message can possibly convey to you.

  15. Sending prayers, hope & wishes. Thinking about you and hoping he can pull through... He's such a brave fighter. BIG HUGS!

  16. Thoughts and prayers for you Trish and Dom

  17. The pillars of strength all three of you are. Positive thoughts, prayers and hugs your way.

  18. So very, very sorry for circumstances that are far too cruel for any parent to endure, never mind your little guy. Praying for strength and God's sheltering love to hold you all as you endure the unthinkable. So sorry ...

  19. When there is breath there is hope. I am feeling your pain in your words. No you are loved, you are supported through the ethers. You are in my prayers.
    Big Love 💜

  20. Thoughts and prayers are with you all.

  21. words seem insufficient...praying for Dom and you all, and hoping for the best. may you feel the love of everybody rooting for your little boy. sending lots of love and prayers.

  22. I am in tears reading this. I am sending heartfelt prayers and love to all of you. May you find strength in each other. From Calgary, AB.

  23. We're here at home praying you Return to us. Love to the Three of You.

  24. I am so sorry to hear he's crashed so hard and sudden, and that you're going through it so far from home. Sending good thoughts and prayers for Dominic, you and Trish.

  25. I've been worried sick most of the day. Know that you've most of a Coast Guard command praying and well wishing. Sean, Trish - know that the three of you have made an impact on more lives than you can ever know.

  26. You have such a beautiful, strong, amazing little boy. My son is 15 months old and when I read your story, I imagine us living though it. Your strength and high spirits are inspiring and I am in awe of you both. It's so great that Dominic got to see all of the fun things and have such good times at Disneyland. Our prayers are with your family. May you all be blessed.

  27. Continued prayers throughout the day that Dom makes it home safe.
    Been in our thoughts and prayers all day.

  28. Praying for you!!! So sorry you are so far from home. Praying that Jesus holds you close right now!

  29. Hang on there Dom! Your a fighter! Thinking and praying for you!