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3,000 children die every year from childhood cancer. We MUST find a cure.

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.

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!

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.

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!

Just wanted to post a quick update and share what Serenity has been up to so far this Christmas.
She has seen Santa three times!

First was at a family Christmas party:

Then she saw him again at the Make A Wish Foundation ‘Christmas Cookies with Santa’ activity:

Finally, she saw him again tonight at the Christmas for Children with Cancer Foundation:

While there, she also saw Cosmo the BYU Cougar again!:

But her favorite part of this evening was getting to hang out with her “Cancer Sister” (as she calls her) Brinley!!! Brinley also has ALL and is just a few months behind Serenity in treatment. We’ve grown pretty close to their family and really appreciate their family, they have the cutest kids in the world! (besides us of course )

Serenity is funny - Brinley is one of her favorite people, she talks about her all the time and makes sure we pray for her every night. But, whenever we get together with Brinley’s family (and whenever we’re around anybody for that matter), Serenity goes into her bashful to the doctor about to poke her mode. She begs to see Brinley and buries her face in my chest the moment she gets there.

We still have a couple more parties coming up so I think she’ll see Santa at least once more before Christmas. I need to say though, we sure are grateful for the organizations that put on so many events - especially around Christmas! That list include The Make A Wish Foundation, Hope Kids and CCC.

Today was another clinic visit. I expected the place to be packed but it was almost empty. That’s always nice. We were assigned to Room 3, which Serenity thought was very cool. 3 is her favorite number (because she is 3 years old).

Serenity got to talk to the Child Life Specialist for a few minutes. Serenity has asked to see her during the past few visits, but when things are crazy busy she’s not always easy to track down. This time she helped Serenity to pick out a toy. Phil & I laughed at the Care Bears toy that she played with. It was like a miniature doll house with all these different parts. Serenity picked up the big dinosaur-age computer and asked, “What’s this?” I don’t think she believed us that it was a computer because it was as big as the Care Bears and the chairs they sat on.

The appointment went quickly. Serenity has been especially bashful lately, so she kept her face hidden from the doctor and nurses most of the time. We managed to snap a few quick photos though!

Here she is getting her port cleaned, so that it can be accessed.

And getting her Vincristine (chemo).

She got to pick out a hat from the hat tree in the clinic.

I stopped by the pharmacy to pick up some Prevacid after her visit. It’s been a few months since we bought any, and I don’t know if our insurance was the same. The co-pay was $41! I was in shock. We’ve never had to pay more than $10 for anything. I only had $10 with me, so I left the medicine there. If she needs it we can have it transferred closer to home and pick it up in a few days.

Phil was laid off several weeks ago and we have no money coming in right now. He’s started applying for out of state jobs since so far nothing has come through locally. It will be a blessing if something comes through, but moving is complicated for the obvious reasons, but also because of Serenity’s treatment. If he is able to get a good paying job outside the state, it will mean him moving and most like I will stay here with the kids until she finishes treatment next year. We are praying that it doesn’t come to that.

Serenity seems to be feeling good, so we got a shock when the clinic called with her lab results. Her ANC is down to ZERO! I don’t know if it’s ever been that low. We always keep her out of public places when her ANC is low (less than 1000) but we are both very nervous that she’ll be exposed to something over the holidays. The good news - if you can call it that - is that she doesn’t get her oral chemo when her ANC is low. We’ve been holding her oral chemo for most of Oct and Nov now, so I do hope that her marrow responds soon and we see those numbers come back up.

Happy Thanksgiving!

Oct 1 - Serenity had a routine clinic visit for her intravenous vincristine. When we got the results of her blood draw, her ANC was quite low - only 400. (Anything under 500 is considered neutropenic.) We were told to hold her chemo (oral chemo, not the dose she’s just received) for 2 weeks and then her blood would be re-drawn and her ANC hopefully high enough to resume chemo. So although I was a bit worried that her counts were low, I thought it would be a nice break for her system from the chemo.

Oct 7 - Home Health nurse comes to take Serenity’s vital signs. No blood draw but everything else is good.

Oct 8 - Serenity wakes looking sick, with a fever, but it quickly disappears on its own and she is back to normal.

Oct 9 - Serenity wakes looking sick. Her fever of 101 degrees lasts for 2 hours, then I call the clinic. (I am supposed to call at one hour but things were crazy getting the other kids out the door for school, so it didn’t happen.) The oncology nurse wants me to take her to the nearest ER saying kids with a fever can get really sick, really fast. We compromise by me agreeing to phone the clinic when I get to American Fork after dropping the twins off with my mother in law. Her fever is 100 degrees by that time and she looks fine, but the clinic wants me to bring her in. Her ANC is only 100, and after some IV antibiotics and some discussion she is admitted to the Immune Compromised ward.

Oct 10 - Her ANC is up to 200.

Oct 11 - Her ANC is back down to 100, but no fever for 24 hours and she looks great. She is bouncing on the bed and asking to go home. We are discharged, which I had mixed feelings about. I was ready to be home, but several kids at home have sore throats and I am worried about her low ANC.

Oct 12 - Home Health is back again, to do a blood draw. Her vitals are good and she is feeling alright, although she is particularly cross today and throw several MAJOR tantrums, which is unlike her. Her ANC is back up to 400, but the clinic wants to see her tomorrow for another blood draw.

So, no DisneyWorld yet, but we’ll be there tomorrow!

This morning we were able to visit Goofie, Pluto, Belle, Mickey and Minnie and get our pictures taken with them. Serenity wasn’t too sure about the guys in dog costumes, or the mice, but she was definitely comfortable with Belle! She had fun hanging out with a fellow Princess.

After photos we had breakfast and visited the park here for a while. Then we headed over to GatorLand to spend some time with the Aligators - Talysa was the brave one!

We’re pretty sure Kaniho was hoping to meet some girls here - but I doubt he thought he’d end up kissing Minnie Mouse!

We were planning on watching the Space Shuttle launch tonight but they changed it (again) to tomorrow night. We’re hoping we can catch it then.
Needless to say, we’re all pretty worn out - can’t wait to see how we feel after tomorrow. All day at DisneyWorld is going to wipe us out!

Today was a LOONG day! We started out leaving a half hour later than we wanted to to head for the airport. I managed to make up most of the time during the drive though - don’t ask. So after chasing 7 kids around all morning, then driving to the airport for an hour, we got on a plane for four hours. What a lovely time. About 2 minutes after we were airborne, the excitement of being on a plane wore off for the kids and the reality of being strapped into an uncomfortable chair for 4 hours really settled in on them. To their credit, they did a pretty good job of keeping quiet for most of the time.

I need to diverge for a second. 6 days ago Indigo (our 4 year old daughter) fell on the concrete and landed on the underside of her chin resulting in it being split very wide open. We took her in and she had to get 6 stitches that had to stay in 5 days - so they came out yesterday night.

Well, no sooner had we landed then a stir crazy Indigo started messing around in the aisles while we were waiting to de-plane. Somehow she managed to end up on the floor and getting her chin stepped on by Gibson. There are about 300 people standing in the aisle and suddenly she is bleeding everywhere! I had to “excuse me” towards the back of the plane to get paper towells and take care of her. Turns out her chin now looks pretty much like it did a week ago. So now I’ve got blood all down me, she is covered in it and there’s some on the seat. Our clothes looked like a mass murder had taken place. Fortunately a good woman handed me a bandage (mine were all checked underneath) that I promptly slapped on her chin.

After we finally exited the plane (in what felt like the slowest de-plane in history) we met up with a rep from Give Kids the World who was holding a big sign for Serenity. We rented a 12 passenger van and made our way to the GKTW Village. This place is magical! The whole place is a playground for kids! We are staying in what looks like a candy house (pictures coming tomorrow) and is right across the street from a lifesize Candyland game! That place looks just like the board game!

We got settled into our cottage and then went to dinner followed by all you can eat ice cream for desert! The kids went and participated in “Village Idol” - a contest for the kids to perform for everyone. In an interesting turn, the judges just could not decide on a winner and so all the participants won!

We headed back to the cottage and got settled in for the night - then everyone decided to order late night pizza. Did I mention that all this food and the lodging - in fact EVERY SINGLE THING is free?!?

So now everyone is crashed and for some reason I’m up blogging. Wow. Time for me to go to bed, it’s 1:25 here! We’ve been taking lots of video and pictures, I’ll get some put up tomorrow.

Our family and house is in chaos as we plan and try to organize for Disney World. I’m ready for it to be over! (totally kidding, but you parents know what I mean) We plan to post several updates while we’re in Florida.

We got Serenity a Snow White outfit at the Disney store the other day - she absolutely loves it!

The awesome folks at Make A Wish Foundation have granted Serenity a wish! She wanted to meet Snow White so….. they’re sending our whole family to Disney World! We’ll be leaving August 26th and returning a week later on September 2nd.

While we’re there, we’ll be staying at Give Kids The World. We’re really excited to take a family trip there! We’re ramping up for it now and trying to get everything organized.

We’ll be blogging much of our trip and sharing lots of photos and videos here. We’ve received advice from several cancer friends who have made the trip already but would love to hear more from anyone else who has already done it!