When I hear the words “life is a journey”, I usually think of a slow, lazy trip that one is taking with interesting little twists and turns along the way. Our journey as of late has been like being stuck on the Verrazano Bridge at 5:30 pm with no A/C in the middle of July, with hungry kids screaming in the backseat, my Diet Coke all gone, a migraine, and the gas tank pushing well below “E”. I think you have the picture! 🙂
It’s not really that bad, to be honest. But I think to best describe it, we are just walking. One foot in front of the other…the cool down, so to speak. I thought I would try to keep everyone updated on Charlie’s journey, by keeping up blog entries when there has been a new development or change in plan, etc.
We want to thank each and every one of you for your many, many prayers, concerns, talks, listening ears, wisdom, and most of all just being there. The one thing we have learned in such a short time these past few weeks is that there is still a lot of good in this world. There are compassionate eyes, and open arms. There are shoulders that still do not mind if you cry on them. There are strangers who become close to your heart in an instant.
Yesterday, Charlie has her skeletal survey done. Basically, a full body x-ray to look for any holes or lesions in her bones. We later met with her oncologist, Dr. Watts, at Children’s Hosptial here in Birmingham.
He informed us that the gum lesion that was biopsied in December had been re-evaluated and it was also LCH (Langerhans Cell Hystiocytosis). He then let us know that there were at least one, and maybe 2 holes that showed up on her skull from the skeletal survey. These three things combined put her in the “Multi-site, high risk” category.” Multi-site”, because of all 3 locations, and “high risk” because of a major organ (lung) involvement.
He explained the recommended treatment (combination of steroids and IV Chemo) which is a national protocol that all of the doctors follow when treating LCH. We were all in agreement to wait a couple of weeks, repeat the Chest CT, and a full Head CT. He is recommending we start the treatment at that time.
We know that the God we serve is a Healer! Please continue to hold our precious Charlie in your prayers. God will get the glory, regardless of which way the road twists or turns in the days ahead. No matter what path our feet walk down, God will have gone before us, paving the way.
His Hand will be evident. His Arms will be constant. His “Grace” will be sufficient. 🙂