Camryn's Journey: Day 100 Celebration: A New Journey Begins

September 29th - October 12th

Yes, I know, the last blog post was two weeks ago. I assure you, this post will more than make up for what was missed last week. There is so much to get everyone caught up to where we are now. Day 100, that is 100 days post transplant, has now come and gone, but not without a little fanfare as Lee Ann planned a birthday party for Camryn's new 100-day-old immune system. And yes, that is weird, but in a good way. We did have fun and the "celebration" allowed us to momentarily appreciate the journey that Camryn, Morgan, and our family have walked together. In some sense, day 100 has been a relief, a comfort, and a huge psychological milestone for all of us. Four months ago I could not even imagine what this day would mean to us, because at that time, the focus was entirely on just getting Camryn through chemotherapy. You could say that our stress levels have significantly dropped since then. Camryn's health is in a very good place right now. Her remaining warts continue to dry up and fall off. The only warts that she has left are on a couple of her fingers where the wart clusters were quite large; and those warts are now turning dark a drying up. What we are witnessing on a daily basis is truly remarkable.

The surgery to remove the central line in Camryn's chest went very well, no issues at all. Camryn certainly will not miss that long chord dangling from her body; nor will she miss the daily flushing of the line. All that will remain of the central line will be small scar on the upper left side of her chest near her heart. To me, a gentle reminder of a journey, traveled by our family down an challenging, unfamiliar, but necessary road.

For the next three months, Camryn's restrictions will remain the same, but she will not need to take as many medications as she has been required to do. Camryn remains "isolated" until January, meaning no school, church, movie theaters, or public places. Of the six month "quarantine", only 2 1/2 months remain. Yet those 2 1/2 months seem like years to Camryn. Even though Camryn's immune system appears to be fully functional and is destroying all of the remaining warts, Camryn still remains susceptible to some opportunistic infections. In fact, everyone in our household, is required to receive a flu shot to protect Camryn since she cannot have one yet. We all received those last weekend. Trust me, for a couple of our older children, getting that shot was a HUGE sacrifice in behalf of Camryn
(we have some highly needle-phobic children).

One other item to share, a very special and touching item. Recently we were contacted by the Make-A-Wish foundation. Camryn had been nominated by her physician's at Vanderbilt to participate in the program. Not only was she nominated, but her nomination was accepted by the program. I admit, prior to all of this I plead ignorance regarding the program. I knew of the organization and some of the great work it does, however, I simply did not understand all that the organization does in behalf of children, who experience life-altering challenges such as illnesses like Camryn's. We have since had multiple visits by members of the local chapter of the organization and have been educated on the wonderful works and dreams this organization does in behalf of children. Camryn had a couple of weeks to determine her wish, and understand, the wish IS hers, not the family's nor her ever-persuading sisters' wish. Camryn choose something that she has always cherished, time with ALL of her family at a place she dearly loves...Disney World. That is her wish, a Disney World trip with her family. All of the particulars are being worked out, details will come later. We are quite overwhelmed by all of this and humbled by the numerous volunteers and organizations that make such dreams as this one come to life for children. No doubt, this trip will be a forever-memory maker for not only Camryn, but also for our entire family. How does one adequately express thanks and gratitude for such kindnesses and blessings? Somehow, we will find a way. More next week...

Please enjoy the promised pictures, posted below: