We're due to be at the hospital by 6 am (uggh!) to get the registration and prep started for a surgery scheduled at 8:30 to remove his "port". After registration, we'll head to the Hematology/Oncology (HemOnc) clinic for the last round of IV chemo drugs around 7:30a, and then off to surgery to have the port removed.
We'd very much appreciate your prayers for us tonight and tomorrow as we approach this last big hurdle.
This ridiculously long, convoluted, and difficult health journey with Daniel started over 5 years ago when he began to have acute and debilitating back pain issues. Ultimately it was discovered that he'd broken his spine in multiple places due to juvenile osteoporosis - something extremely rare in children and which we went through multiple doctors and many months before even getting a diagnosis at Riley. Incidentally, that diagnosis was obtained in roughly 5 minutes once we got to the right doctor!
But as we were seeing success with the osteoporosis treatments in the Fall of 2011, he began to have other symptoms that weren't related to the osteoporosis and which he had a really hard time getting anyone to take seriously. Without rehashing all that, it turned out to be leukemia as we discovered on Jan 6, 2012 - also due to finding the right doctor at Riley. If you're interested you can read the beginning of this journey at my first post here.
I will always wonder whether it was the huge doses of x-rays and other testing he received during the early days of the osteoporosis that actually gave him the leukemia. Radiation - particularly X-rays, are a known cause of leukemia, which is a cancer of the blood (bone marrow specifically). However, so are certain pesticides and our yearly inundation with them from the farm fields to the west of us have had us wondering about that too - which might also explain why Andrea came down with a slightly different variety of leukemia just a couple years before.
Regardless of the cause, it's been a wild ride of pain, suffering, fear, and heart-ache ... each of which our wonderful God has powerfully outshone with His grace, love, joy, blessing, protection, and calls to faith. Many of these have come to us directly via His "Wonderful Counselor" residing within us, and many other instances of each have come through the Body of Christ as our brothers and sisters have gathered around us and helped us bear these burdens.
Examples like this one illustrate just a bit of the many and amazing ways the Lord has shown Himself far bigger than any situation we have or ever could face. The outpouring of love and grace from friends, family, and the Lord Himself have made this journey an amazing one. I won't say I wouldn't wish for it to be any different ... I do. I would MUCH rather this never happened. Maybe someday I'll have enough faith to think differently, but I at this point, I could never bring myself to wish this journey upon any child or parent - and far more so the journeys of those that have been so very much harder than ours ... of which we've personally known several along the way.
Yet now, barring a relapse, God forbid, we have come to the last IV infusion of these wonderful / horrible drugs. If you've read any of my blog on this subject, you know I have a love-hate relationship with these chemo drugs. I refuse to call them "medicine", and yet I'm also confident they are the reason I still have a family. It is almost a "miracle" of medicine that these drugs exist and are able to do what they do. Not long ago, this disease was a death sentence, plain and simple. I just desperately wish we were farther along than we are as they are incredibly costly - and the financial expense is the least of what I mean!
On the very first day of chemo treatment, Daniel underwent surgery to install a "port" in his chest. Basically, they knew he would be stuck with needles so many times over the next 3 years that it would destroy his normal access veins. So they installed a kind of pin-cushion in this chest that can take all the needles, is easier to access, and provides a direct line into his blood stream. Tomorrow, after the last IV treatment, the port comes out. It's a bit of a mixed blessing because he'll still be back every month for a blood test which will now have to come from his arm. But they feel the port has risks (infection) associated with it and is no longer worth it once the chemo protocol is finished.
For the past 2-1/2 years or so, he's been in what they call "maintenance" phase which consists of
- Daily oral chemo drugs
- IV infusion once a month
- Spinal tap & injection every 3 months (it was every month or more for the first couple years)
The last spinal took place last month (Feb). Tomorrow is the last IV infusion. Technically, he's still on the oral drugs until his appointment in April. That will truly be the last day. But the oral drugs are not nearly as hard on him as the one he gets injected with each month (called Vincristine) - so THIS is really the big day!
Next month, at his first check-up appointment, it will be the last day of the oral chemo drugs as well and he will officially "Ring The BELL!" (There is a rather loud and very special bell at the HemOnc clinic that every patient gets to ring when they end their treatment. As you might imagine, it's a VERY special day!) But for Daniel, for the side effects, for his health, and most especially for his own stress level - tomorrow is the biggest milestone and the (virtual) end of a very long and difficult journey.
We are so very thankful to all of you who have come alongside us in any capacity along the way. Some have been involved with projects around the house, transportation, meals, finances, and many other "hands-on" helps. And while we are eternally grateful for all the things that everyone has done and continues to do for us, what we have been most grateful for is the innumerable prayers that you have sent up before the throne on our behalf. It's impossible to describe (though I've tried hard) what it's like to go through this with your child and your spouse. But it's even more indescribable to convey the sense of comfort, security, even joy that just having someone say, "praying". There have quite literally been thousands of such notes along the way in every format imaginable from person-2-person, to Facebook, this blog, CaringBridge, email, texts, and others. We've been very "connected" through this process and I'm convinced it would have been a very different journey for us without that "connectedness" from all the different forms of media. Andrea and I have said on many occasions that we don't understand those who hide their trials from their friends and even family, but we do understand that everyone deals with adversity differently. We can only state that these forms of media have been an incredible blessing to us in many, many ways. Those of you who helped us, prayed for us, or even just thought about us ... THANK YOU. Those of you who let us know with even so simple a thing as a text or a comment as "praying" ... THANK YOU!
We're still trying to figure out exactly how to celebrate this event. Daniel wants me to buy him a video game console in celebration. Let's just say that won't be happening any time soon.
Grace and Peace to all,
- Tim -
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