2 days before Serenity’s diagnosis

I stumbled across an email I wrote to Phil’s cousin. It’s dated two days before we got Serenity’s diagnosis.

Every week or two Serenity gets a raging fever. 104 w/o medication but it usually comes down with Motrin. Last time I took her in – I rarely do that – she had a bad double ear infection. I wouldn’t normally do the antibiotics so readily but she also had an upper respiratory infection and where her teeth were waiting to be pulled was all abcessed. So we did the abx and she felt great and then we both got yeast and it was awful. She’s been through a lot lately. Her hand was slammed in the door a couple of weeks ago, it’s still blue and black and a bit puffy. She can move her fingers but I think she’ll lose the nail, it looks so bad. She’s got a hacking cough and (clear) runny nose. All of this I think is ok but suddenly the familiar fever, and it’s been nagging at me that she bruises SO easily. I mean Phil holds her legs to change her diaper and she looks like she has been abused. Horrible, deep dark bruises all over her body, ever time she falls down. And I wonder whether something is wrong with her.

We have a great ped, but no insurance and right now no money so I am not taking her in. She actually seems a little better today than yesterday. Yesterday she alternated sleeping and screaming at the top of her lungs all day and evening, even with the Motrin.

Any ideas?

It was weird to read, because I don’t remember her being that sick. I do remember thinking she was sicker than my other kids had been.

I am so grateful for modern medicine and the miracles that have made it possible for Serenity to be alive and well today.

Last Therapy yesterday!

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!

Counting down the days

The last few weeks have been rough for Serenity. She has been fighting off viruses left and right. First she had an eye infection, with goopy eyes that were sealed shut every morning. For that we had to hold her down and administer eye drops (ciprofloxacin). She hated it because the medicine feels like it’s burning her eyes. She has also had this persistent, barking cough for weeks now. In addition to the septra, mercaptopurine, and methotrexate that she takes regularly, her pediatrician put her on a nasal spray medication (fluticasone) and an oral antibiotic (Amoxicillin) to help with the cough. When there was little improvement, the doctor put her on first an inhaler and then a nebulizer (Albuterol). A week later, the doctor sent her for a chest x-ray because she wasn’t improving. The chest x-ray showed some viral inflammation but no pneumonia, which we were thankful for. Our doctor also prescribed prednisolone. (Yea! bonus steroid week!) Just kidding. Steroid week is one we all dread around here. It makes Serenity feel awful and she turns into quite the little monster some days. Then she cries and says, “I hate it when I’m mean to people.”

Several siblings have had the same cough but they are mostly over it.

Serenity seemed to improve for a few days, but now it’s back. We’ve made a third trip to the pediatrician and she has an ear infection now, too, which boggles my mind given the multiple antibiotics she’s been on this month. She is now on a different antibiotic, and has a second nebulizer medication (Budesonide). It breaks my heart to see her propped up in bed with the mask – which she dislikes – over her face, trying to breathe in as much of the medicine as she possibly can. She is tired of being sick, and I wish more than anything that I could do something to help her. The other day she spiked a fever of 102.6 which made us nervous, but Tylenol brought it down and she’s been ok since.

We had a clinic visit about 10 days ago and I mentioned her cough to the nurse practitioner. He thinks she will feel better soon when she is off treatment and not on so many medications. I hope so! She’s had leg pain that comes and goes for months now, and I thought again about pressing for a bone scan to rule out AVN. Since she has only a few weeks left of treatment I decided to hold off and see what happens when she goes off the steroids and chemo.

Next month! I can hardly believe it. In the beginning I couldn’t imagine life this far down the road. Serenity goes back to the clinic next month for her final lumbar puncture and her final dose of intravenous and intrathecal (in her spine) chemotherapy. Then 5 days of steroids and then we finish out the month of July with her daily oral & weekly chemo and she’s done!

I have to say, I am beyond excited for her and also pretty nervous. With ALL, the ideal is for the doctors to achieve remission within a period of days. So when people ask if Serenity is in remission, they’re shocked to hear that she was in remission by day 14. Research has shown that if treatment isn’t maintained for several years, the child is more likely to relapse. We were told that she would be on treatment for approximately 2 1/2 years. (It’s 3 1/2 years for boys.) It is actually calculated to be 2 years from the time she started Interim Maintenance (one of the phases of treatment). So the end of July will be 2 years for us.

I asked the nurse practitioner about Off Treatment follow up. They would still like us to bring her in monthly for a CBC and exam, but it will be in another part of the clinic and “quick in and out”, he said. He asked if I wanted her port to come out at her appointment next month, or wait an extra month “just to see”. I told him I’d like to leave it in for another year! Her port has been such a blessing. Blood draws are quick and painless. He said they won’t leave it in for a year, one month it is. A CBC can be done with just a drop of blood so they will just do a finger poke. I still have reservations getting her port out, because if they needed a line for anything in the future she would have to have an IV, like anyone else. I do understand why they want to remove her port-a-cath. With a central line, there is increased risk for infection, and when she gets a fever, we run her to the hospital for IV antibiotics. With the port gone, we won’t need to do that anymore.

In my heart I believe we have kicked this thing and I am excited for my little girl to get her healthy body back and be a normal kid. At the same time, the idea of *not* giving her chemo every day to keep the beast at bay terrifies me. For the past 2 years she has had chemo nearly every day and multiple doctors have hovered over her, with us chronicling and reporting every symptom, no matter how mild. Now we’re going back into the world of Everybody Else where a fever is just a fever and a cough is just a cough. Except we’re not Everybody Else and maybe never will be. I walk around with an anvil labeled Cancer hanging over my head, wondering when it will drop. Sometimes I forget it’s there, but not often. Maybe in time that will change.

Raising $10,000,000 for Leukemia

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!

Chest XRays Show Serenity’s Port

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.