Every year around this time, Owen has to undergo a series of tests to make sure that the dreadful and evil disease known as Krabbe Leukodystrophy isn’t showing it’s nasty face in our Mickey Mouse lovin’, Goldfish and peach eatin’, always on the move, lovingly amazing, full-of-life son. And every year around this time, Kyle and I, without meaning to and with good reason, let worry and fear seep into our minds. We question every little thing that doesn’t seem normal or typical.
The title of this blog post is Reality and Results, so first I just want to inform people of the reality of the disease while also shedding a little light of our reality of what we face as parents. And of course sharing results from our most recent visit to Duke.
First the disease. As most of you know, we know this disease on a completely different spectrum with our precious daughter, Mabry Kate. Because of the rarity of Krabbe Leukodystrophy, she was diagnosed too late to receive the treatment Owen did. Without treatment (which is a totally different battle itself), we watched this disease rob her of every ability — some very obvious such as sitting up, rolling over, crawling, smiling, talking, etc., but others not so obvious and things we often take for granted such as moving of arms and legs, swallowing, coughing, crying, eating, and eventually breathing.
Given what our innocent and beautiful daughter endured, it’s only natural for us as parents to let worry and fear creep into our minds when reality hits and we remember that Owen still has Krabbe Leukodystrophy. His treatment is not a cure (which I would love to explain, but that’s a completely separate post in and of itself), but as chemotherapy and various other treatments aren’t exactly cures for diseases such as cancer, we hope his treatment will always be enough to keep Krabbe from ever progressing in his little body.
All that to say that sometimes, in our reality, we see Owen do things like stand for a few seconds and take 8 steps on his own one day, and then the next he buckles his knees and won’t stand and laughs uncomfortably when we try to get him to walk. We sometimes immediately think…Is this disease related? Has Krabbe started progressing? Has he lost an ability because of the disease? Is he going to have to suffer the way Mabry did? -OR- Is he just being stubborn like his momma? Is he being a typical toddler? Is he doing this just to push our buttons?
I know without even having a conversation with Kyle, that disease-related questions pop into his mind, and he knows the same about me. We hardly ever mention the disease from the other spectrum as we know it. We both innately do this to try to keep the other from worrying or questioning anything other than the fact that Owen is stubborn. We do it to protect each other’s hearts.
And even then we have to remember, no matter what the answer is to those questions, God is in control of Owen’s life. Thank goodness. Because while lots of time fear and worry try to take over our minds, God undoubtedly provides a peace that surpasses all understanding when we remember to give it all over to Him. Which I confess, is not every time. Owen inherited his stubbornness from me unfortunately, and my stubbornness often keeps me from feeling, knowing and accepting God’s comfort when I need it most. This is something I struggle with and will continue to work on.
And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
And now the results.
Just to give you an idea (I’m not even sure I can remember all of them), Owen had numerous tests through bloodwork, in addition to anesthesia for an MRI of his brain, EEG (looks for seizure activity), BAER (looks at how well the brain communicates with his ears), VEP (looks at how well the brain communicates with his eyes), chest X-ray, echocardiogram, nerve conduction study, pulmonary function testing, dentist appointment, anesthesia for dental work, behavioral analysis and testing, and physical therapy analysis. I think that about sums it up?!
All results are in and Kyle and I spoke with his amazing doctor, Dr. Joanne Kurtzberg. She very thoroughly walked us through what each report said. Of course we were on edge waiting for her call, but to put it simply, the results were all amazing!
All of his tests showed that the results where either unchanged (which is great with this disease) or normal. To hear her say the word normal over and over again seemed so surreal and was such a breath of fresh air for the both of us, because we know our family is far from what society deems as normal. It also made me smile at the significant purpose Mabry Kate’s life served for Owen. I smile because I see her in him every day. I am so thankful to the Lord for that blessing in the midst of all we have been through as a family.
The most encouraging result , in my opinion (and there are many to be encouraged about), is one blood draw that looks at levels of psychosine. Psychosine is a lipid that builds up in the bodies of individuals who have Krabbe Leukodystrophy. This lipid is responsible for all the damage and destruction to the body. Many individuals who have undergone transplant start with higher levels of psychosine prior to treatment, and that number decreases but often doesn’t normalize. In Owen’s case, his has normalized!!! To be considered normal, you have to have a level of less that 10, and Owen’s level was 7.5!!! Praise the Lord!
So for another year, we can rest easy knowing that according to Dr. Kurtzberg, there are no signs of Krabbe in his body. We know this upcoming year, until the next gamut of tests, there will be worry and fear and uncertaintly, but we will continue to remind ourselves of what is certain…God is in control and we trust His will, though sometimes we don’t agree with it. We know it’s best.
…give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
1 Thessalonians 5:8