Author: Phil

I’ve been avoiding doing this. The early days when Serenity was diagnosed were hard – some of the hardest days of my life. Diving into them and the emotions there isn’t something I’m super thrilled to do.

But, it’s important. It’s important because this is all about letting those outside ‘the circle’ know the details, the things you have to do and what you have to go through to make it through having a Cancer Kid.

It’s important because most of the world does not know about the Herculean effort made by non-profit organizations and their vast armies of volunteers to ease the burden that is thrust upon families who have an unwanted disease forced on them.

It’s important because it fully reminds me of what we went through and how incredibly …. RAW it was.

In those first 24 hours, we started out the morning taking Serenity for what we considered an annoying routine doctor visit. By the end of the day, I found myself in the hospital facing and trying to deal with the reality that my baby could be dead in the next 24 hours. Unbeknownst to me at the time, things would get worse moving forward, a lot worse, before they ever started getting better. And that’s why I don’t really want to go back to the beginning. Continue reading “Revisiting the Beginning – an Emotional Journey to Four Years ago”

Yesterday was a huge landmark for Serenity – it was her last “therapeutic” clinic visit! She’ll still have to go in and have her blood checked every month for a couple years, but yesterday she had her last lumbar puncture, her last intrathecal and intravenous chemo!!!

We had a fun time at the clinic, the nurses (who ROCK!) threw a little party for her and everyone was congratulating her on her last therapy. The best part was we purposely scheduled it to be the day after she turned four – so her late birthday preset was being able to go off therapy.

Here’s the video of our day at the clinic, we hope you enjoy it! (click the video to go to a larger image)

In case you missed it or want to watch it again, here’s her first cancer video:

Serenity’s Cancer Journey from Phil801 Burns on Vimeo.

We’ll write more soon – have to post and run right now but wanted to share this with everyone as soon as possible….we’ve got a BIG party to plan that YOU are invited to!

For the last several weeks we’ve (Adria and I) been working on a new business plan. It won’t make us any money. It will hopefully raise at least 10 million dollars for Cancer Research and Family Support though, it’s called Run for Leukemia.

To raise such a significant amount of money, Run for Leukemia will have to do something completely over the top, seemingly impossible and possibly insane.

Here’s the gist of the plan:

Run for Leukemia will start at Disney Land and run across the country to Vermont. Then we’ll run down the Eastern seaboard to Disney World.

Yes, Run.

I’ll be doing the running – 20 miles a day, 5 days a week for one year to be exact.

Over the past two years, while Serenity has been dealing with Leukemia, we’ve been itching to be able to do something significant to support Leukemia research and to help support the non-profits who provide help to Cancer Families. Running across the country to raise money for charity has been before, but we think that by treating it as a business we’ve figured out how to raise a significant amount of money while doing it.

The key is in the organization. We will have about 20 paid staffers who’s job is specifically to setup, organize and fully prepare fundraising events with local schools as we move across the country. They will work several months ahead of us contacting schools and working with them to do a fundraiser, once the schools have agreed, they’ll work with the local community to put on a big event and invite local fire departments, police departments, city and state dignitaries, hospitals, athletic team members and local celebrities. Most importantly, they’ll work with local media to have the events heavily covered.

The event highlight will consist of the school kids talking about how much they were able to raise and having them present the funds to local Cancer Families and Run for Leukemia. To be successful at raising $10 million, Run for Leukemia will need to put on 200 of these events across the country that raise $50,000 each. We plan to put on 250. The bulk of that $50k will be raised by selling local businesses sponsorship banners that the event will take place in front of. There are several other things we’ll be doing along the way to raise money and national media attention as well.

The entire family will be with me on the road for the year along with several paid staff members. We’ll be caravaning with 3 travel trailers and 5 trucks with campers. All of them will be wrapped with ads, essentially creating a group of moving billboards that will slowly move across and down the country for a year and will be the backdrop of all the events and interviews we do along the way. We plan to finance the trip by selling ad space on those vehicles.

We’ll be raising money for the following organizations: CureSearch (they fund research for children’s leukemia), Make A Wish Foundation, HopeKids and the Christmas for Children with Cancer Foundation. All of these organizations have had a significant impact on our lives and in supporting Serenity through her treatment.

I’m really excited about this! It will be a tough, grueling year but it’ll be totally worth it!

This is just a summary of a large business plan we’ve put together, we’re at the stage of beginning to execute on that plan by looking for advertisers who are interested in having a cross country billboard for a year. If you know of any companies that might be interested, please let us know!

We’ve just started a Facebook page, there’s not much there yet but we’re working on it. If you like this idea, please click the like button below!

Serenity had chest xrays a couple days ago. It was pretty amusing watching the rad tech freak out when her port showed up – he had no idea it was in there! I talked the doctor into giving us a copy of them so we could show what an installed port looks like.

It’s pretty obvious over there on her left.

You can faintly see the central line running from the port into her heart.

Today is an exciting day for Serenity and our family. It’s been 2 years since her diagnosis! (it was actually yesterday, the 24th of May but most of the family was either sick or gone.) Why Carpe Diem Day? It’s to remind Cancer Survivors and their families that every day is a gift and to live it to the fullest.

As parents, we are extremely protective of our children, we’re willing to fight to the death for them. There is nothing in the world like the completely impotent feeling you feel when a doctor mumbles that your child has cancer. It’s a heart sinking, world crashing, totally hopeless feeling. It immediately invokes tears – why? Because there is absolutely nothing you as a parent can do about it. There is no fighting the beast, there is no selflessly jumping in front of the bullet. Once the word Cancer is out, you are just a bystander, collateral damage, a helpless, useless attache to the person who just got diagnosed. Once the Cancer genie out of the bottle, there is not going back. Life as you knew it is over – you are now a Cancer Family and everything is different.

Two years ago when Serenity was diagnosed with Leukemia, they weren’t yet sure what type it was. There were two types they thought it could be, AML with a low survival rate or ALL with an 80% survival rate. It would take 24 hours for us to find out which one she had. During that time we as parents had to come to terms with the very real possibility that she could be dead within a couple days to a few months.

Mentally and emotionally we had to consider her dead to be able to deal with what was coming. Getting to that point was one of the hardest things I’ve had to do, but it was worth it. The following day when we found out she had ALL it was like she was given back to us for a time. Since then, every day is a gift, a blessing, to be able to have her with us. At some point, it is very highly likely that cancer will take her. But, for the last two years she has been able to be with us. I can’t express how grateful we are for that!

Going through that experience really taught us to be grateful for every day that we have her with us. Whether it’s a tough day, stressful, roid rage or just happy and snugly – we are so very grateful to have it.

So, today we celebrate the gift of another two years with her, and pray for many many more!

I want to pictorially recapture the last two years, much of it is available here on the blog but for most of us it’s been a while since we read through those early posts. Here’s the last two years in snapshots.

The last picture of her previous life – Pre-Cancer.

In the ambulance, being medi-vac’d to Primary Childrens Hospital.

In the PCMC ER, waiting to be admintted

A bad reaction to a blood transfusion

Unhappy about her port, right after her operation to have it installed.

A month later her hair fell out.

At Give Kids the World on her Wish Trip from Make A Wish Foundation to DisneyWorld to meet Snow White!

About a year after diagnosis.

Being treated last week for a viral bronchial infection.

At her last clinic visit – our happy, mostly healthy almost 4 year old Cancer Survivor!

Tonight we’ll be celebrating her Carpe Diem day with a small family party. She goes off treatment in July. She’s well aware that she only has 2 more clinic visits and she is EXCITED!!! She’ll be throwing a big off-treatment bash in July, you’re all invited!