×

CaringBridge Needs Your Help

Make a gift to CaringBridge in honor of Charlie and you’ll help even more people surround each other with love and support this holiday season. Donate Now

A tough year

I know it's been a long time...I haven't updated Charlie's condition because as ridiculous as it sounds......I don;t want to jinx anything.  One year ago today, Charlie was enjoying life to it's fullest.  His skin looked amazing, he felt amazing, and he was just starting the taper of the anti rejection drug that kept his immune system susceptible to infection.  We had just began the planning and preparation for the following school year in hopes that Charlie could join his fellow classmates at Sunrise School.  The weather was sunny, warm, and Charlie was enjoying time outdoors, riding his battery operated four wheeler, and swinging on the big swing that hung from our tree in the back yard.  I could not have imagined at that time what complications and pain Charlie would have in store.  After the taper of CSA (cyclosporin), Charlie engraftment numbers began to decline. When our family came down with a virus, little did we know that Charlie's own cells would attack each-other in response, and leave him with a non-functioning immune system.  To describe to you what this means or what this "looks like" on a little boy with EB is beyond what most people could imagine.  To move forward, Charlie needed another transplant or he would die.  He teetered on the "ICU respirator" line for a long time.  After his transplant......it was waiting, hospitalization, and pain.  More pain than I care to remember, or talk about.  After the horrendous wounds on Charlie's knees, neck, and armpits began to ease....the pain in his knees and femur bones lingered.  The recovery from this second transplant can not be compared to the first.  It has been much harder, longer, and scarier.  Why?  Because the chemo, infection, and the major catastrophic events that destroyed his bone marrow, have taken a toll on him.  He did not walk for a very long time.  Even standing would cause Charlie to tremble and shake.  He did not give up and we did not give up on him.  His wheelchair never came out....He would not use his walker.  Even through his pain, the desire to play with his brothers and sister outweighed the comfort of a chair. In the past few months Charlie has had his ups and downs.  But, he is in far less pain.  We took him to see the Grand Canyon.  We took him to Colorado and watched him swim in a "natural hot spring" for two hours.  He has NEVER swam.  He loved it and didn't want to get out.  Charlie is catching up in school.  No one ever could have imagined how quickly Charlie would absorb reading, writing, numbers,ect.  He has made amazing progress that no one was prepared to see.  He just needed to feel good.  That's all.  He has two days of school at home, and two days "at school" in his own little class room.  He wears a mask in the hall, but he is able to feel like he is part of something.  I do not think the fear of germs will ever leave me.  I do not think that I will ever be able to just move on and forget what has happened in this past year.  It has been both emotionally and physically exhausting on our family.  I have stepped back.  Taken a break from it all.  I know I have "with drawn" myself from much of the world.  When a person is isolated for so long, it begins to feel normal.  This weather isn't helping either...

So, after two years of isolation and winter....I have had enough.  I am ready for sunshine, fresh air, and people.  I miss my girl friends.  I miss nights out, and I miss community events.  I do not know if there will ever be a "right time." to break free without risking Charlie's health.  Just waiting for a sign..