Amanda and the Hendersons

It was close to 4 years ago when the mention of a bone marrow transplant was first introduced.... At the time, it had already been over a year that Parklen had been ill.....we had just received his diagnosis and I met with a transplant doctor to talk about future possibilities.....in case the primary treatment options didn't work. The meeting with that doctor was terrifying.  I spent the next few years dragging my feet on the entire transplant idea.  I knew that Parklen was sick, actually at times, it felt that I was the only one who really knew..... I just always hoped that the treatment plans would pan out.  That drug therapy would change his life, give him a chance. As time went on, it became very clear to me that he was not going to get better this way.  I could tell each day when I woke up and looked him in the eyes that every moment was becoming harder and harder for him to make it through..... A year ago last month he got very sick. Parklen had ...

Parklen had a tough day yesterday..... he was nervous before his procedure, he began picking at his nails as soon as I helped him into his hospital gown.....but he pushed through. After his surgery he woke up pretty sore.... he would have liked to sleep in today.... But, with things to do and places to be, we loaded up the car to head to clinic early this morning. He didn't complain too much, just winced in pain a little as I slipped on his jacket... the cold weather has a hold on both of our attitudes lately and we are ready for spring... As we pulled out of the apartment garage Parklen asked, "What are we going to the hospital for?" Today was supposed to be a simple exam, some blood draws and some IV medicine..... Yesterday after his bone marrow biopsy was taken, the doctor said we would talk about going home next week when the results came back....... I didn't have many expectations for today past a few long hours in the small infusion room...... T...

Today is day +97. I cannot believe it. 3 days until the 100 day goal...... As time has gone on in these past 97 days things have changed so much....... We used to have so much worry about if Parklen would be ok..... the worry is still there, but has shifted a bit....... The worry now is more of a what can we do to keep Parklen well....... Look at my chunky brown haired boy.... Tomorrow Parklen has surgery.... He has to get a new port in his chest. Although he is doing so well, he will still have needs for periodic IV meds....and blood draws. So, in goes the port..... He had the same type of port for years....... no big deal.... While he is under anesthesia, they will take a biopsy of his marrow..... testing this marrow will help them determine when it is safe for us to return home. Big deal.... Parklen is nervous. I can't really explain it past the fact that he is five years old. He hates anesthesia, says it scares him to go to sleep. When I ask him why...

Today is day +94 94 days....seems like a life time...... This morning Parklen and I were snuggled up, I was holding his hand as he slept away..... As I ran my thumb back and forth, I couldn't help but notice his tiny little fingernails peering out over the tops of his fingers.... Something seemingly small made my heart skip a beat. Parklen has always, for as long as I can remember......had a habit of picking his fingernails, and fingers.... It was always his way to cope when he felt sad, scared or nervous..... sad thing was, he was always sad, scared or nervous. His fingers would often bleed.... Even when he was in the ICU, and he had a breathing tube in place.... when he couldn't move his body or speak a single word.... he picked his fingernails. As soon as they would take his fragile wrists out of the restraints that kept him from pulling out his breathing tube if he woke up in a panic....the moment those white velcro straps came off....he would lift up his ...

The past weekend was unforgettable. I mean it. I hope I will always remember it. I pray that the moments of this weekend stay with me forever..... I wish so badly that I could package the feelings of the last few days..... the gratitude, the appreciation, the happiness....... the simplicity. I would hand it out to everyone I know, even people in passing...... When they opened the package.... when they began to pull at the ribbon that held it together.... I would have to fight to contain my feelings of excitement.... When they peered inside... what would they see? Inside the package.... would be knowledge. Inside the package.... would be understanding. The world is so busy, our lives move so quickly. It can be so hard to see what we have. As I lay in bed Thursday evening... I felt the happiest that I can remember feeling in years. There I was, at home, in my bed, next to my husband... My daughter asleep in her own room, the boys hunkered down toge...

Today is day +85.  You know you have been cooped up for too long when your five year old boy asks you to help him make a "relaxation place" for his action figures...complete with tiny pillows and blankets..... because after all, even Batman needs to take it easy once in a while. Things are moving right along. Today we went to clinic for Parklen's routine checkup and blood draws. Last week I decided that I should plant a seed....a tiny murmur of an idea....... I have learned that if you sit back and wait for certain things to happen.....they may just not. I have learned that it never hurts to ask for something.....anything..... the worst that comes from asking is the answer no . The worst that comes from not  asking......never knowing. So, I thought it through and decided I would ask..... "What do you think about Parklen going home for a weekend?" I wasn't sure what answer I would hear..... but I was sure that I needed to ask. They d...

Today marks the 100th day from the original transplant day. The original "day +100" had we not had any hang ups.... It got me thinking this morning as I stared at that number on the calendar..... What would things have been like if it were..... Parklen is doing so amazing..... and I can remember the pure devastation of putting off the transplant.....twice. I can remember feeling as though things were not going right.... What if the doctors hadn't found the abnormal tests that made them wait? Would Parklen still be doing great? What if we would have pushed through.... and the problems came up when it was too late? What if Parklen were still in the hospital, or doing poorly because of missed information? It would be amazing if today were day +100..... but, its not. Instead, today is day +83. and thank God for that. 83 days towards our goal...... and 83 days of doing great...... and no matter how hard is sometimes is to have to wait..... God...