Zero to cancer

This week has been one of the hardest in my life, and in Stephanie’s and Wesley’s. There’s no way to sugarcoat it, so I’ll start with the facts: Wesley has childhood acute lymphoblastic leukemia (ALL), the most common form of leukemia. By all indications his prognosis is good, but it’s very early and we have a very long road ahead of us.

A quick aside to our friends and family

There’s a lot you should know for now. First of all, if you know us personally and this is the first you’ve heard, I’m sorry you had to find out this way; we are exhausted and shocked and there’s just no way for us to connect with all of our loved ones right now individually. This will change in time, but right now we want you to hear this from us rather than through the grapevine.

That doesn’t mean in any way that we don’t want to hear from you; all the moral, spiritual, and comic relief you can offer will always be welcomed. We may not be able to respond right away, but please know we’re hearing you.

How we found out

This all happened so suddenly that the background is easy to tell. On Saturday, October 27, Stephanie noticed an unusual, small patch of red dots that seemed like it was a minor rash that we now know are called petechiae. It hadn’t gone away by Monday, so she saw our pediatrician who sent her to get blood drawn. A few hours later the labs were back and we got a call from the doctor that told us little more than his hemoglobin and platelets were off, and to pack a bag and go straight to Children’s Hospital of Philadelphia, about an hour from home. They called ahead and had us quickly checked into emergency. Everything from there has been a blur. More blood was drawn and the doctors quickly and openly shared their suspicions – some kind of leukemia seemed likely – and mapped out next steps. What followed was a long night of tests further confirming our fears, and we were eventually admitted to the pediatric oncology ward sometime well after midnight.

Tomorrow Wesley has two procedures which will fill in the last remaining gaps of his diagnosis, and will let the doctors lay out a treatment plan. He’ll be sedated while they draw marrow and then spinal fluid, and he’ll also be receiving his first initial chemotherapy. Once the results of these tests are back, sometime late tomorrow or the following morning, we’ll meet with our oncology team and find out what’s next. While he is under, they will also install a port which will make drawing blood and providing him with intravenous medication and fluids much easier for the foreseeable future.

The doctors expect he’ll start chemo right away, and if he responds normally we’ll get to go home sometime in the next 5 to 10 days, though it could be a little longer. Once home, we’ll start on a long term plan which will involve a treatment and testing regimen that would normally be expected to run for about three years, in varying intensities. Most of this time he’ll be at home, visiting clinics anywhere from a few times a week to monthly, but he’ll be at elevated risk for infection, digestive problems, and other challenges we’ll have to tackle as they arise.

The most likely, and hopeful, prognosis is full recovery with little if any long term damage. A few decades ago it was a crap shoot, but today we are looking at roughly a 90% cure rate.

Wesley is otherwise completely healthy, and he is at the young end of the spectrum for this disease; both are very positive factors for his recovery. There’s no obvious damage to his organs – heart, lungs, liver, etc., all appear healthy and strong – which points at this being caught early, which is another positive factor. He’s also his characteristic self, sweet and inquisitive and playful, at least when no one is poking needles into him.

We are fortunate to be in one of the absolutely best pediatric oncology centers in the country. The staff have been wonderful, caring, attentive and forthright; the facility is lovely, and at only about an hour from home it’s practically next door by our old Southern California standards. Once we move to outpatient support, it’s likely we’ll be able to go to one of their satellite facilities, which is even closer to home, though for emergencies and inpatient we’ll have to come back to Philadelphia. Stephanie is my rock and she’ll necessarily be his constant companion while I do my best to keep a roof over our heads and provide all the support possible.

Please keep us in your hearts and don’t hesitate to reach out. At the same time, don’t feel you have to. We’re neck deep in a bad dream right now, but there’s some light coming and we’re trying to remain hopeful and focused on his treatment and his quality of life. We can’t accept visitors at the moment, and it’s likely we’ll be home long before that’d be possible. Once we are home everything changes for us and we’ll be working very hard to figure out how to juggle this new life that just presented itself. It’s very likely we’ll be needing other kinds of support in the future, and we’ll do our best to be upfront with our needs.

I’m not getting much sleep so texts and IMs are always welcome to either of us but please understand if we don’t respond. I’ll be posting regular updates here and on Facebook because for all its flaws, this is what it’s best for.

We don’t want anyone to despair for us. Wesley is the best thing to happen in our lives and he’s got so much to offer the world that someday this will just be part of his epic origin story.

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7 Responses

  1. Joy Hollows says:

    My 12 year old daughter was diagnosed with B cell ALL back in July at Chop. I feel your shock and pain. All I can tell you is to put one foot in front of the other and take it one day at a time. It helps me to turn my fear over to God each day. These past months have been hard but we look for the blessings in all of this too. For me, it has been hearing my daughter say that she has never felt closer to her family and that she never knew how much her friends cared.

    • Roger Howard says:

      Dear Joy – thank you so much for visiting, we are of course still reeling but the support we’ve felt from CHOP, from friends and family, and from perfect strangers has been overwhelmingly reassuring. I hope none of us has to go back to CHOP, but if we do perhaps we’ll cross paths.

  2. Eillen Badilla says:

    From the Universe and to your heart, we are sending you Healing Vibes and Healing Prayers. And Love. Julie and Eillen Ford

  3. Lena says:

    Loving you every day. Wes is so lucky to have you two for parents. 💕

  4. Karen Remijan says:

    Rodger and Stephanie and Wesley, I am a friend of Charla’s and have been for many years. Charla just sent me your blog and it touches me deeply as I know not only what Wesley is going through but what you are going through as well. A little over a year ago I was diagnosed with stomach cancer and have been on a journey of self-healing for quite some time. I started with conventional treatments, chemotherapy to be exact, but soon realized that my body could not handle it. Surgery was my next option, total gastrectomy, but a series of events changed the course of my journey. I decided, after many many months of research and soul-searching that a more natural way of treating cancer made more sense to me. Everything from completely changing my lifestyle, nutrition, supplements, emotional and mind work and science-based non-toxic Therapies have been my life for the last 9 months. At present my tumor is pretty stable and there’s no cancer in the rest of my body. Cancers of the blood, like lymphoma and some leukemias, respond very well to Conventional treatments. But during and after the treatments there are definitely things you can do and implement to not only keep your son healthy but also cancer free for life. I would be happy to share everything I know and have learned over the past year-and-a-half with you. I know right now you’ve been thrust Into the Fire and you are scared, stunned and perhaps even angry. There are lot of extremely crucial decisions to make for your child you probably wish that it was one of you that had cancer instead of him. If I could give you one piece of advice from experience, that is to breathe and don’t let fear drive your decisions or actions. Ask questions, seek information and do your research. But most of all, deal with the fear. I have learned that cancer is not the enemy. Fear is. Cancer is not a death sentence and I have seen many people way worse off than I am heal their bodies and are now cancer-free. Wesley’s lucky because he is so young and all he knows is love. That will be his greatest healer. Words cannot describe what your family is going through right now but know that you are loved and supported, even by strangers. I’m including my email address so that if and when you might want or need my help, just Reach Out. Your family is in my prayers. Believe it or not, there are so many gifts that come with this disease. Gifts you never could imagine but they are there. Look for the gifts and Center yourself in love. It will change the way you think and that will change everything!

  5. Linda and John says:

    From Linda and John (Charla’s friends): We are thinking of all of you with all best wishes at this time and going forward. We are so glad that wonderful care is available to you …and know that love and positive energy surrounds you, from near and far. Blessings…

  6. Vinnie says:

    Sending you all healing energy and my love.