Amanda and the Hendersons

Today will go down in the books as the longest day ever........ Day Zero. Transplant day. The new beginning. We started the festivities this morning at 4:00 AM......After just going to bed a couple of hours earlier, this was pretty early!!!! Paysen and I headed down to check in for his surgery....you could see the nerves on his face, I could feel them in his tiny hand that I held with in mine.. He had been looking toward this surgery for over a month. There had been so many delays, I can only imagine the things that were going on in My big boy's head...... He mustered the strength to show a brave face, however difficult. We checked him in and headed up. He took comfort in having both parents present for him. He listened as the "Sleep doctor" told of what she would do..... as we watched him we could see the clock ticking, he was growing more nervous. Paysen had a traumatic event in the operating room. It was the worst thing I have witnessed before a s

Today is the last day before the transplant.............. It was a very strange day........... I felt like I was walking through a haze. I am sure it was my minds way of dealing with the anticipation. We sure have come a long way since his first hospitalization.......... It is strange to think that he was the exact age that Phin is right now when he first showed symptoms...... He was so small. He still is. Such a brave boy. Such an inspiration. Full of courage. I had a chance to do something today. An amazing opportunity, They usually have to give the donors a pint of blood after surgery, because of all that they take out. I was able to donate a pint of blood myself, for them to give to Paysen. I really cant explain the feeling it gave me.... I felt like I was actually doing something for my child. It was a chance to physically give of myself. I could have just let them give him blood from the bank..... Parklen gets it all the time, It is safe. B

Lately it has felt as though we were not going to have many great days for a while...... Today was, by Henderson standards, a great day. Parklen felt overall, very well today. (They have informed me that the chemo makes the kiddos really sick about a week after it has begun and this is the honeymoon period.) There were a lot of smiles, a lot of giggles..... some naps...... a dad.... a brother and sister.... There were games..... lots of food eaten..... Lots of talking about Parklen's future........decsions made on places he will go....... My heart skips a beat when I think about the short time that stands between us and day zero.... We have been waiting with anticipation, Praying for the time to come.... Looking. It is almost here. Parklen doesn't hate his baths any more...... I suppose the million that he was forced to take kind of broke him in....... Tomorrow is another day of anti rejection drugs..... another day of prep..... another nega

Day -3. It was a day of highs and lows...... Parklen did better than expected through out the tough drug that finished up today. He had reactions, but they were prepared for the worst.... the worst never came. This evening he received his last dose of actual Chemotherapy. Ever. That is a high. Tomorrow he starts an anti rejection drug.....used to help prepare his body to accept his brother's marrow. He feels bad. Sad. Angry. Frustrated. Sick. Cold. Hot. Hungry. Unable to eat much. and then he feels... Happy. Excited. Giggly. He is riding a roller coaster of which he has no control...... and neither do I. I can only do my best to meet his needs and find him comfort. Most of the time, my efforts fall short. He mostly just wants ME. There is something to be said about being someones everything..... Just holding him in my arms seem to calm his spirit. Because of the coming transplant and the hardships of chemo being in the past, the doctor sug

Today was better than yesterday in many ways. Harder in some. Parklen had a very emotional day. The drugs are beginning to effect his mood..... Parklen has done better than expected with the chemo...... I'm counting that fact as prayers answered....... He had a skin reaction to the Chemo drug that caused so much fuss yesterday..... this is something they were expecting....something that happens to most patients on this particular drug. He spent most of his time crying, yelling, sleeping, and...................crying.  All while having spots.......... Four days until day zero...... It seems like time is standing still and moving forward at rapid speeds...... Devan will be here tomorrow, We cannot wait. I am not sure if its just because he is so nice to look at, or because he is crazy enough to make me laugh at the most inappropriate times, or the simple fact that he is my best friend..... but having him hear makes everything a little easier. .......

Today is day -5. Today was rough. There is five days left until transplant...... five days..... The new med that they started today was hard.... We're talking, the nurse didn't hardly leave the room for the entire shift..... He had ups and downs... Mostly downs..... There was a point today where Parklen's breathing caused enough alarm for the nurse to push the help button.  I watched as the entire floor worth of nurses and doctors ran down the hall towards my baby's room. He was ok.  But he scared us. There was another point today where he was shaking horribly bad...... couldn't stop if he tried.... The doctors were close by for the entire day. My stomach was in my throat for just as long.... Chemo. Poison. Paysen has lost his cool. Today I watched as he tried to tackle the Chaplin. Later, he layed down in the middle of the halway, refusing to walk...throwing a fit. He is becoming more unlike himself every day. He broke down an

Get ready for a whole lot of blogging.............Isnt this number two just TODAY?!?!?  ummm yes, yes it is. It is my favorite way to communicate the happenings with Parklen and everyone else....... Today was day -6. It was a tough day. Not a bite of food has passed through Parklen's lips. He felt sick almost the entire day. Slept a whole lot. Cried some too. The around the clock baths have continued.... Each one gets a little harder for my boy.... and for his mom. It breaks my heart each time I must put on gloves just to touch him. It hurts his too..... Of all of the days of Chemo.... They say tomorrow will be the toughest..... After today, I am trying to prepare. None of this is easy...... Quite the opposite...... It is hard on us all..... Each time Parklen falls asleep he wakes up to ask if he has lost all of his hair.... He is not looking forward to that part..... The cutting of all of our hair has lost its shine..... The delays we have had ha

 I always dreamed of having a daughter...............  I never dreamed that having one would change my life so much.............. Half a year spent as this baby's mother..........  I thought that having another baby was going to make life more difficult....... That the timing was not right...... Instead it has made the life we had full....... and wonderful...........  Phinlynn Jace, you are the unforeseen blessing that I will be forever thankful for........... God's timing is never wrong...... You have brought light to so many difficult things in your short time on this earth.........  You are my best little buddy....... The gal who can melt my heart with one smile.... The tiny human that keeps me from sleep but makes me happy to be awake with you.........  You bring smiles to each and every person who sees you..... Strangers cannot pass with out commenting on your beauty and your smile...... I will never know what we did before we h

Today was day negative 7.....that means 7 days until transplant.. Today began Parklen's new journey, his journey towards health. Today was the first day of Chemo..... If I could explain the nerves I experienced in the days leading up, If I could really make you understand what has been going through my mind.... If there were a way to show you EXACTLY what I felt in anticipation of today, I am sure that you too would feel nauseous, sick, and afraid. All of the hype.... lead to a pretty uneventful day. He received his first dose of Chemo as planned..... he will get his second this evening..... He began with a drug that is excreted through your skin.... Because of its toxicity he cannot have any tape on his skin....he had to get rid of the feeding tube for a few days, and he cannot have tape over his central line.....So he is trying to drink extra shakes for nutrition and using a netting around his chest to hold a sterile gauze over his site.....we call that his tube