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.
The purpose of doing this though, is pure. If I had a spare million bucks, I would give all of it to a select list of Cancer Kid/Family Support Organizations without a second thought. As it is, although Serenity has been off treatment for two years, we’re still only ‘close’ to overcoming the huge personal and financial burden/impact on our family as a result of what started that day.
Over the two and a half years that Serenity was on chemo and fighting for her life - the ONLY good memories, the ONLY good times were provided by organizations like Hope Kids. At least twice a month, Hope Kids puts on well organized, usually completely over-the-top and FUN events for the families of kids with life threatening illnesses. There are just a couple other organizations that I hold in the same esteem as Hope Kids, and they will get their post in the future. This story however, is all about Hope Kids Utah and their amazing Coordinator, C.R. Oldham. But, before we get into that, there are some things you need to understand. Things that way too many, yet very few parents and families understand. Dark things, things people should never have to experience, things that run deep, that go to the core of your soul, things that force you to question everything you know about yourself.
Once you’ve experienced the utter horror of holding your baby in your arms when she is nearly grey in color, is completely lethargic, responds to very little stimulus, has more wires and lines coming out of her than a DC motor - once you hold your baby like that and you look into her eyes and you can SEE the fear, the uncertainty, the pleading, the trust, the utter helplessness to defend herself - it CHANGES you. It creates a rift in your heart and soul that forces you to stare face to face with your greatest unspoken fears. The experience transforms you into something, someone …. different.
As a man, it evokes a primal, visceral response. It immediately demands your warrior mode in full battle readiness. You instantly don your armor, grab your spear, sword and dagger and prepare to wade onto the blood soaked battlefield with righteous intent; ready and willing to hack a new river of death, flowing with the failure of your assailants as they fall before you. You see Red. Your suppressed, controlled, oft denied protector of the family mode engages. As adrenaline rushes through your veins, you feel the tingle of power travel from your core out to your fingertips, through every follicle on your scalp, out through your heels - you are READY for battle. Nothing exists in the world any longer, except you stepping up and destroying the monster threatening your family. It is now literally YOU or the killer attacking your baby - and it SHALL NOT be you! As you raise your face to the sky, your wolf howl battle cry on the edge of your lips, your fists clenching for assault, the small muscles cording tightly throughout your body to provide further armor, your mighty roar rises up from the depths of your belly and fills your throat, your eyes glaze over, your vision narrows, focused in a tight tunnel, your ears hear every whisper of electronics surrounding you. You PUNCH to the sky! Your hands fly open as your arms raise over your head in defiance, every muscle in your chest, arms, back and stomach turn to knotted steel as your now lightening reflexes drive your arms down, your chest out, your head forward, your hips bent, ready for any attacker. Your battle cry now fills every fiber of your being and BURSTS forth from your mouth in abject challenge and defiance as you commit yourself fully to mortal combat against the destroyer of your offspring……..
…… and out comes a whimper. Your eyes well up and drain themselves down your cheeks, the adrenaline drains from you and you collapse to your knees, your weapons of war clanging to the ground along with your intent, your heart bursts out of your chest as you realize there is NOTHING you can do. There is no enemy to attack. There is no battle to be waged. You are completely, utterly, wholly - HELPLESS. You concede that you are relegated to standing by and observing as the life slips from your child. You confess your pathetic uselessness as a man; while everything you’ve ever felt and believed is the duty of a father, husband, brother, protector and provider is mercilessly stripped from you by that sneering enemy, scoffing while leaving you a hollow, helpless, hopeless shell of a man. Your catatonic avatar stands there, tears pouring down its face, your wife wondering what transpired in the last few seconds for she can SEE the visible change; the draining of your ego, your power, your strength - she SEES you give in, give up, shrivel, and concede defeat to that heinous, evil, remorseless and invisible killer of children - CANCER.
As you sit there watching, praying, hoping against hope, trying to steel yourself for what’s coming soon; you resolve that your true purpose in God’s plan is to be there to comfort, to love, to smile when there is nothing but the beauty of your broken, beaten, failing child to smile at - you covenant to do whatever is required to save her, to fight the battles for her that you possibly can, to advocate for her, to comfort her, to care for her, to never leave her side no matter what. In short time, you build a new ego for yourself - not of the battle ready veteran, but of the caring, loving, cautious provider. You commit to protecting her against germs - to forcefully expel any who would dare come within 50 feet of her without proper washing and masking, to judiciously sterilize every minuscule thing that comes within her space, to demand everyone within touching distance of her immediately sanitize - not 3 minutes ago, that’s not good enough - do it NOW. You agree to force toxic chemicals down her throat against her will, you commit to denying her the opportunity to be around other people for the foreseeable future, you accept the daunting challenge of being the valiant provider for an immune compromised child. In exchange for her chance at her life, you immediately and willingly give up yours.
You shut down your business. Over time you lose your home, your nice new cars, your luxurious and comfortable items, you commit to sacrifice your entire lifestyle, your family’s comfort, your hopes, your dreams, your aspirations, everything - and you do it - in anticipation of that chance at life.
And THAT, my friends, is precisely what I have avoided re-living in my mind.
During the years of cancer treatment, our lives were literally consumed with the endless demands of caring for a cancer kid. We did not have the time, money, opportunity and honestly - not even the inclination - to do anything other than care for Serenity.
Except that every other week, we were able to pack Serenity and the rest of the family into the newly purchased ramshackle, run-down vehicle that we were ecstatic to acquire after our Eddie Bauer edition SUVs were taken back, and simply drive to a Hope Kids event. The beauty of a Hope Kids event is that it focuses around the physically, and often immunologically, severely compromised children who make up its membership. NOBODY gives weird looks at the tubes your child has, or the bald head, or wheelchair, walker, breathing tubes, disformity, scarring or other obvious handicap. Nobody stares, nobody points, nobody is irritated at slow moving blockades of amazing kids using equipment typically reserved for the elderly. Instead, everyone is able to ask other families “what does your child have?”, “how did your child’s last radiation treatment go?” or “can I help you with your NG tube or wheelchair?”. You can have an immediate heart-felt, heart-breaking conversation with other parents there, who are complete strangers, because you all KNOW. Each of you know what the other is going through, each of you have amazing stories, accomplishments, failures, heartbreaks and experiences in common. Each of you is a shell of what you once were and is a protector and advocate for their child. The children - whether the patient or the siblings - have no social barriers against walking up to a clearly suffering and injured child and hugging them, talking to them, asking what they can do for them - because they KNOW. They know that this child is just like their sibling or themselves. This child is waging a massive, powerful, lethal battle within themselves against invisible monsters hell-bent on killing them. And each of them know that the next time Hope Kids gathers, the next time we all get together, we’ll have the talk. The talk where we inform each other of which angels in the group have earned their wings. Which of the beautiful children we were visiting with last week has lost their battle and is now free, defeated by DNA, germs or microscopic deadly and invisible enemies. It could EASILY be that child sitting in front of you right there. So you visit with them, you comfort them if you can; you take an odyssey for them, you lasso a mountain, tame that rock and loosen its feet from the ground and drag, push, prod and shove it to the feet of that child so they can experience and appreciate the beauty of it just once before they are no longer able to - and you do it right now because they might be the one we’re sharing a moment for at our next gathering.
You, your children, your spouse, all the families at a Hope Kids event are able to let down their guard ever so slightly, if only for a moment, and relax and enjoy LIFE in this mutually cautioned gathering where each person is on alert for all of the Hope Kids.
And that child who for the past 8 days has barely moved about, been exhausted, been puking their guts out, had every sickness that anyone within 500 feet carried, spent the last 40 hours crying in pain from their chemo and steroids attacking their frail little bodies - that child suddenly GLOWS! There is perhaps the slightest hint of a smile, possibly even a full smile. And if we’re fortunate, we might be blessed with a laugh: a laugh that says “SCREW YOU WORLD! You might kill me, but right now, I’m going to enjoy myself!” The laugh of the child who for the last several days has had NO HOPE. Then several of them might contagiously catch it - and you may be gifted with that beautiful chorus of angels laughing, playing, glowing, LIVING. Even if for just that moment. For quickly, the pain sets back in, the nausea returns or, energy spent, fatigue takes over - and the moment is passed. But they HAD that moment. That Gift. That momentary, fleeting, flicker of light. They had it. It is theirs. And they can keep it, always. It is a solitary memory that things aren’t ALWAYS so bad. That their trial of pain, suffering and misery as their life is slowly drained from them against their will has its little reprieves, its little flickers of light, its passing calm - that sometimes; rarely, but every once in a great while - there is a sliver of HOPE.
THAT is the value that Hope Kids provides. THAT is their selfless offering that is conceived, created and given - without any strings, expectations, guilt or otherwise - as a completely PUREgift of LOVE.
A Hope Kids event is filled with Love. It is palpable, it thickens the air, it fills your nostrils and lightens your load. It lets parents unwind - just a titch. It lets siblings interact with children outside their family - but with their family there for a change, it lets patients feel NORMAL. They feel normal because Hope Kids CHANGES Normal. A Hope Kids event is crafted to re-engineer normal into being a Hope Family. At these events, every family has a Hope Kid. The wonderful volunteers who come and lovingly put on the event, they don’t always have a Hope Kid - and that’s pretty weird. It’s weird because in the Hope Kids world - fighting for the life of one of their own is what every family does. If you’re not in a battle for life or recently been in one - it’s kind of difficult to fit in. And that is the magic and beauty of the Hope Kids environment!
Whether it’s pony rides, picnics, motorcycles, movies, parties with the entire Disney lineup, taking over the whole roller-rink, swimming, flying, exploring the zoo, an aquarium or driving race cars; a Hope Kids event is always designed to be fantastic enough to encourage these bruised and worn children to let down their guard, to participate in life, to have FUN!
The only good memories during the battle for my daughters life are memories CREATED by Hope Kids. And that is why I search for ways to help support them.
You CANNOT put on events over and over that are so amazing, unique and intricately done that kids fighting for their lives will relax and participate - without MONEY. It is unfortunate that Hope Kids must acquire donations in order to provide the loving opportunities they do - but they MUST. In their entire organization in Utah, there is only ONE paid employee. Everything else is done by volunteers. Nearly ALL the money raised goes directly to putting on exciting and enticing events for children who, without Hope Kids, would otherwise be sitting at home with their respirators and their chemo drips, bored out of their minds, resigned to and just waiting to die.
There is no organization that I know of who fulfills this need, other than Hope Kids. Their name communicates their mission - to GIVE Hope to Kids who have no reason to hope. To change their lives, to show them that even while you’re dying, it is possible to move past the pain and enjoy life, even if just for a minute. To provide them with a dose of that well known best medicine; Hope.
Hope Kids SHOULD have an unlimited budget. They SHOULD have access to all the money they could possibly need. Their Mission merits it. And, perhaps they WOULD if people slowed down to the pace of a Hope Kid and looked around. If people were to come to one of these events and see the Hope Kids’ “customers” and how their “product” was received; I believe that most everyone would begin emptying their pockets just to be able to be involved with these very special children who are desperately fighting for something most of us have never had to fight for: literally their very lives.
It takes hundreds of thousands of dollars a year to provide the Hope Kids vision. That money is raised through multiple methods and events. But one way is for those of us who have benefited from their services and who’s children are no longer at risk of losing their lives, to give back - to do what we can to raise some portion that can bring that momentary beam of light to a warrior angels eyes.
I’ve done what I can on my own. It isn’t much. It isn’t what I would like it to be. It isn’t enough.
Now I’m asking you. Now I’m turning to my network of friends and acquaintances and sharing the experiences and heartbreak of which I have never previously spoken. I’m sharing these things because I want you to understand that asking for donations is not something I take lightly. I’m not accustomed to asking for anything. But, for this, I will.
I’m asking for your help. I want to see Hope Kids be able to continue doing what they do year in and year out. Unfortunately, there is no end to the demographic they provide for. New “customers” are diagnosed every single day. The need for their services does not wane as these little angels return home, when one moves on, two more step into their place.
Let’s keep Hope Kids providing those little smiles to these precious kids. I’m asking you to consider donating $5.00. But that’s just because I’m asking it openly to everyone. Obviously, $5.00 does not go very far to creating magical experiences for hundreds of kids. So, I’m asking you to dig deep. Consider what a bit of your money COULD do for Kids and Families who have had their entire existence yanked up, shredded and thrown into the inferno. Consider the parents, siblings and patients who simply do not have the time - and maybe not the money, resources, opportunity - but especially they do not have the TIME to create memories like a Hope Kid memory. They are too busy fighting off invisible demons with sanitizer, toxic drugs and pure force of will to rise up anew each morning and return to the endless battle. If you’re currently struggling the way we are, I’m not attempting to disparage that. Five dollars is a wonderfully thoughtful gift when that is all you can muster. There are enough of us who are having challenging times right now, that perhaps if all of us provide $5 to this worthy cause, the sheer multiples of that $5 will become powerful.
Think hard, dig deep, feel great! You can see some of your potential benefactors right here.
To donate through Serenity’s Hope Kids fundraiser page, just click here.
Thank you for your time reading my experiences and for your consideration to this amazing organization! And may God Bless you and your family as He has blessed mine.
September 20, 2012 2 Comments
A few weeks ago Serenity started behaving really oddly. She would scream for hours every day about various things, often because she was hungry and didn’t know what she wanted to eat. She had trouble hearing us, and would often throw things and hit people. It seemed like nothing we did would serve to calm her and it was very frustrating after many days of it.
At one point I spent some time researching the symptoms of a brain tumor, because her behavior was so unusual. We wondered if it was a delayed effect of the chemo, but that didn’t make sense since she has been off chemo since the end of July. Finally it occurred to us that she might have an ear infection and so Phil took her in. She does have a double ear infection, poor girl.
Since we have had her on the antibiotics things have calmed down a lot. She is more like her normal sweet self. She complains of leg pain sometimes - almost always the same leg - which makes me worry about AVN. The clinic has yet to do a follow up EKG which I am anxious for as well. But overall, things are good and we are enjoying the days with our sweet children.
October 3, 2010 4 Comments
I’ve been feeling frustrated about things I cannot control. Sweet Brinley had a lemonade stand several weeks ago that raised over $6,000 for childhood cancer research. This was so amazing and touching to me. The next morning I woke up and saw all over the news that our current governor had received $700,000 in campaign contributions that same day. I know the two are totally unrelated, but it bothered me A LOT that there is such a huge discrepancy between where we as a society spend our money and where we SHOULD be spending it.
Yesterday I went to sign up for the National Bone Marrow Registry. A local boy I do not know had decided to host this for his Eagle Scout project, and someone had left a flyer on my door. The test was simple: 4 cotton swabs were used inside my cheek to collect cells. The family of this boy was willing to cover the cost of the test ($100). When I arrived at the location I was the only donor in the building. I wanted to run outside and yell at the world, “WHY isn’t everyone in here donating?”
I understand it is a commitment that maybe not everyone is willing to make. By signing up, I was agreeing to donate circulating blood cells or bone marrow for anyone who is a match, until I turn 61. But these donations save lives! They save the lives of people who will DIE without a match. They save the lives of little innocent children with leukemia. (Serenity did not need a bone marrow transplant, but many children do. If she were to relapse someday she very well might.) The donation is USUALLY done via blood nowadays, not even bone marrow. I was just shocked and saddened that this event did not get a better response. Maybe people really don’t care.
September 26, 2010 2 Comments
3,000 children die every year from childhood cancer. We MUST find a cure.
September 2, 2010 No Comments
But Serenity is OFF TREATMENT and PORT FREE! We are so excited and feel very blessed.
August 13, 2010 7 Comments
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.
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.
August 6, 2010 2 Comments
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:
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!
July 8, 2010 8 Comments
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.
June 21, 2010 6 Comments
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.
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!
May 27, 2010 1 Comment
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.
May 26, 2010 3 Comments
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!
May 25, 2010 8 Comments
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.
April 26, 2010 1 Comment
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
April 12, 2010 No Comments
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.
April 1, 2010 1 Comment
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.
March 31, 2010 2 Comments