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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!

Phil took Serenity to her clinic visit this month. Here she is sitting in the room waiting for the nurse to come draw her blood for labs.

In the Rapid Treatment Unit awaiting her lumbar puncture procedure.

Waking up from her procedure. She is very sleepy and HUNGRY after fasting all morning.

Back in the clinic for her intravenous chemo. These quarterly visits are especially hard on her because she gets chemo in her spine and also IV. We are lucky that her side effects are minimal. After this visit she was running around and even jumped on the neighbors tramp! She’s supposed to spend extra time lying down - I think to keep the chemo in her spinal fluid longer - so we were a little aghast to realize she had been on the tramp.

The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward.

by Cheryl Putnam
mom to a leukemia survivor, Robby Putnam, Acute Lymphocytic Leukemia 1/93, 1/95, 7/95 and Bone Marrow Transport 1/96, now age 22.5

Serenity’s labs came back. Everything looks ok. Her ANC is borderline at 600. I wish it was higher but she seems to be feeling fine and her temp hasn’t gone above 100.

Things have been going pretty well. This last steroid course was a rough one, but it’s ended and Serenity’s gone several months without any fevers or bad illness. She has complained of leg pain quite a bit, but the NP at our last clinic visit printed out her growth charts and said it’s probably growing pains because she has been growing.

She had a CBC this morning to check counts and we are waiting for the results. When the nurse took her temp it was 100, so I’m keeping an eye on it. When it climbs to 101 the clinic generally has us come in to check her counts. I’m glad we had a blood draw today already. Hopefully her ANC will be 500 or more. If that’s the case I don’t think we’ll have to go in even if her temperature does rise.

It would be a bad time for a hospital stay. Phil’s out of town for a week and I’m already a little overwhelmed with him gone.

Serenity has been very tired lately. We had a clinic visit last week and her labs came back ok, so I don’t know what it is I’m worried about exactly. And worried is too strong a word for it. But I do worry, all the time; I worry when things are normal and I worry more when they’re not.

She’s been sleeping a little bit during the day in the last 2 weeks and that’s unusual. But her counts are good and she looks good, so maybe she is gearing up for a growth spurt or something.

I’m more tired than normal too, but that is part of being a mom I think.

Serenity is doing well. I haven’t updated here regularly and I’m feeling guilty about that. There was some drama with our new insurance and getting authorization for her to have Home Health do blood draws at home, and then some more drama with getting them to pay for one of her prescriptions. Both instances involved many phone calls and more than a few tears but everything worked out in the end.

We go back to the clinic next week for her monthly visit. Right now she is on 75% chemo and feeling pretty good. She was very tired yesterday and fell asleep in my arms at lunch, which is unusual for her. Anything unusual makes me worry but today she is running around and acting fine, so hopefully she’s not teetering on the brink of any illness.

Serenity has had a cold for several days now, and a cough that sounds painful. She’s run a low grade fever for several nights, but it’s always gone by morning. And today she started complaining about her ears.

Mommy, why do I talk funny? Am I talking in Spanish?

Last night she was up most of the night crying and generally feeling awful. So this morning I took her to the pediatrician. I was starting to worry she had bronchitis, because a cousin who is also sick has both bronchitis and infection in her eye and ear. Good news! It’s just an ear infection and her lungs are clear. The doctor gave us a prescription for Amoxicillin and said it’s not usual for her fever to only surface at bedtime.

Serenity had her monthly appointment at the clinic on the 20th. I was anxious to learn what her ANC was because of her previous dentist appointment. Fortunately, it was 2.8 which is pretty high for a cancer kid. So high, in fact, that they decided to bump her chemo up to 75%. She was on 100% chemo for months originally, so it makes me a teensy bit nervous when they have her on less than a full dose. (Her ANC should ideally fall within a certain range, so the chemo is adjusted based on her ANC. Too little and she’s not getting enough to fight the cancer; too much and her counts will crash. It’s a delicate balance.)

The clinic was super busy when we were there. Our provider told me that there were 6 new cases that day! It’s always a weird feeling to see newly diagnosed families in the waiting room. I hear the things they say and a part of me wants to interrupt and tell them what they’re really in for for the next 2-3 years. Instead I keep my mouth shut and mind my own business.

Serenity had her lumbar puncture after our clinic visit. For the first time the medicine the anesthesiologist gave her didn’t put her to sleep immediately, which unnerved me. After a few seconds he drew it back through her line and pushed it again. This time it made her sleepy, but she was still sitting up and looking at me, and she started to cry. Usually she falls asleep instantly. He gave her another small dose and she continued to cry and call out for me as I laid her down on the bed. He put the oxygen mask on her face and she was writhing around on the bed and crying softly. It was the saddest thing. At that point they asked me to leave so they could start her procedure, so I did, but it was hard. I knew she was too out of it to know what was happening, and would be asleep in a few more seconds, but it was hard to leave her there calling for me. She did great through the procedure and woke up quickly afterward, still calling for me. We had an incident when Indigo broke her jaw a few months ago and kept waking up through the anesthesia, despite the fact that they kept increasing her dose. I was afraid that Serenity would wake up during her lumbar puncture (spinal tap) and maybe she did. These kids go through so much and just take it all in stride. It makes me proud of her, and in awe, and breaks my heart all at the same time.

After her lumbar puncture, where they put chemo into her spinal column and draw out some fluid to test for blasts, Serenity was soon back to normal although a little subdued. She’d been fasting all day for her procedure and it was funny to hear her talk about all the different things she suddenly wanted to eat.

We went back up to the clinic for her vincristine in her port, and then home. I was supposed to start her back on dexamethasone, which helps the vincristine cross the blood barrier, and I forgot! I didn’t remember for 2 days, and I am just kicking myself for that. They even reminded me at the clinic. Every once in a while we make a mistake on her medications - and while I know that it happens, and it’s even factored into the 2-3 year treatment protocol - there is always a small part of me that knows that if she were to relapse, I would always hold myself responsible.

This week we’ve been dealing with a VERY emotional and clingy Steroid Girl. Serenity gets hysterical very quickly on steroids and stops speaking in words we can understand. She throws herself on the floor and screams unintelligibly while Phil and I rally around trying to guess what she is upset about. This week has been harder than most. I’m sure it’s not helped by the fact that she doesn’t feel well. The kids have all come down with a horrible cough and cold as well. Phil and I are teetering on the brink of becoming sick and I just don’t know what we’ll do if it happens. I’m so exhausted and worn out just trying to take care of everybody that I can’t get sick myself.

Avalon is an amazing and very brave 6 year old. She underwent 2 years of treatment for leukemia and is in remission. Avalon has brain, GI, neurologic, and musculo-skeletal damage from the treatment and continues to amaze and inspire family and friends alike.

Avalon’s mother has been a huge support to parents of children with ALL. Her emails and words of advice and encouragement have helped me more times than I can count. I consider her a friend and my heart is breaking for what Avalon and her family are going through right now.

Serenity insists that we include several cancer warriors in our prayers every night. If one is forgotten - which only happens when someone other than Serenity is saying the prayer - we start over. Avalon is one of those warriors. Right now Avalon needs all the prayers she can get. Please take a moment to visit her website and keep her family in your thoughts and prayers.

http://www.caringbridge.org/visit/avalonhavan