Champion For Beckett

Have you ever experienced this? When you’re going through issues in your life that take up your time, then before you know it you get this knock on the head and look around and realize what you’re missing.  This happened to me the other day after I wrote a note with my Christmas tree, dedicating it to my little friend, Beckett,  who is 11 years old and in Children's Hospital in Winnipeg.

Beckett was born 11 years ago with cystic fibrosis and has been fighting a very valiant battle with the support of many friends and family ever since.

After Posting that text and my Christmas tree picture I thought, "How does Beckett's day look ? What does he go through in the hospital every day?" So I thought, "Well, why don’t I just ask his mom?" And am I glad I did. I’m still in shock as to what she shared with me and I’m going to share it with you today.

In this time of giving and buying candy canes, doing our Christmas trees, Christmas dinners and family get togethers, some wanted some not, it’s very easy to forget those who are not experiencing good situations or good feelings . I ask that you will take five minutes out of your busy month and read what Beckett goes through every single minute of every day and then ask yourself, "Can you do something to help?"

  With love,
  Peggy.


From Beckett's Mom, Desneige Meyer:

 "Hi Peggy,

Thank you, for checking in on Beckett. This is where we are at: Beckett is fighting a life-threatening lung infection called Non-Tuberculosis Mycobacterium (NTM). It’s rare and only attacks the very weak. It is not contagious like common tuberculosis, but it does invade and destroy the lung tissue the same way. It’s impossible to say when Beckett got infected with NTM, but we learned about it when he started coughing up blood just after Thanksgiving. His NTM infection is extremely resistant to treatment. He needs a complex cocktail of IV antimicrobials in a form of chemotherapy for between 2 and 6 months. The wide range in timeline isn’t how long it takes to get to a cure — that will need a year or longer — the range is so variable because with treatment this strong the doctors need to balance killing the NTM infection against killing the patient.

Beckett is only 11. His doctors know it is impossible for his organs to survive a continuous year of this therapy. So, they treat for a while, then let him rest and reassess the damage. And then they treat some more later.

Beckett started NTM therapy at the beginning of November. He had a minor surgery to install a port-a-cath between his skin and his heart so that he wouldn’t have to endure endless needles for IV meds and bloodwork. In the first 2.5 weeks in Children’s Hospital he gracefully tolerated two EKGs, an echocardiogram, three pulmonary function tests, a contrast CT scan, two chest X-rays, 95 IV medication infusions, a hearing test, 57 airway clearance physiotherapy sessions, 95 puffers, 76 nebulized medications, a night on IV fluids to counteract some minor kidney damage, and swallowed 266 pills. Of course, this is on top of eating, sleeping, playing, and keeping up on his school work. All the while sharing his hospital room with other patients, and entertaining a team of more than 40 paediatricians of different specialties.

But on day 19, things got bad. He had had a week of diarrhea already, and started to get a fever. Then he developed a sudden rash with an itch so bad it gave him panic attacks. Around the clock, with every infusion of his IV, the rash would flare. 5.5 times the adult dose of antihistamines took down the severity of the flares, but prolonged them up to 8 hours a day of manic itching, with the other 16 hours still being less intense, but still
bad enough he’d scratch right through his skin without noticing. And then the liver failure began.

After four days of this, last Thursday we made the heartbreaking decision to stop the NTM treatment. The reaction he had is called DRESS syndrome. It’s fatal 10%-20% of the time. Thankfully, Beckett didn’t die. Immunologists don’t know why some people become allergic to their medications after weeks of taking them, but individuals who do react this way tend to do it sporadically their whole lives. This is the fourth time
Beckett has had an adverse drug reaction to IV medications. In fairness, he has been on IV a lot - he has been hospitalized 13 times already to treat his Cystic Fibrosis, with probably around 30 different IV drugs. I can’t say for sure, because there are so many we’ve actually lost count. There’s no way to stop the allergic reactions, and there’s no way to predict when it’s going to happen.

So, today Beckett is doing very well, while his body detoxes and his liver heals. But deep inside, the NTM is eating away at his weak lung tissue. So, as soon as the rash is gone and his liver is better he needs to start a new chemotherapy. Probably next week. But this round will be so much worse. It’s not likely to work as well, and the side effects are horrifying. They tell us hearing loss, vertigo, liver damage, kidney failure, gastric ulcers, and pancreatitis are all very common side effects. Also, searing stomach pain so bad that 40-50% of patients stop treatment within a few days. And, there is nausea so terrible they borrow anti-nausea medications from oncology to treat it. It also raises blood sugars, which will be difficult to manage because Beckett is also Diabetic. And, to top it all off, 95% of patients on this treatment turn orange — and it will last for months after the treatment stops.

I’m not going to lie: we are terrified. While all this goes on for Beckett, we’ve needed to make some big adaptations. I have been living at the hospital with Beckett 24/7, while Warren stays at home with our 10-year old. And we miss each other desperately. I stopped working in my small business, and also took an indefinite leave of absence from my PhD research (sacrificing my funding), turning our two-income
household into one. Our friends and family have taken over cooking for us and driving Donovan to school, our dog has gone to live with another family temporarily, my mother had to take stress leave, and we are trying to sell our second car. Beckett’s treatment is going to go on for months.

This update doesn’t really have a... happy ending. At least not yet. The goal is to get Beckett through this. He is an incredibly brave, resilient little boy. Despite his soft heart, hundreds of cumulative days in hospital has taught him to be tough as nails when grit is required, and to make fun the rest of the time. If anyone can do it, he can. But if you’re the praying, wishing, or hoping kind, please send him your love. He needs it. And so do the rest of us.

Love, Desneige"


At this point Desneige and the rest of Beckett's family are doing what they can to help Beckett feel comfortable. Beckett is one of the most courageous people on this earth. He is positive, caring and is a champion for change. In his short life he has been able to impact how I look at the world and the beautiful people in it.

Right now Beckett need is family and they have given up so much to be able to be with him 24/7, including half their income and their second car. Your support will ensure that his family can continue to care for him without the worry of financial stress. Whether you can give $2 or $2000 you will be making a huge difference in Beckett's life. Please donate and help this family be able to focus on one thing, being champions for this beautiful boy. 

Hugs, 

Peggy.

Baby Beckett and Silver 11 years ago.