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.