We asked Tina Saavedra to keep a daily diary documenting her emotions and Nathan's reactions to the various treatments he received in preparation for his transplant on Thursday. Here is their story. The entries have been edited.
I am feeling stressed and nervous because I still don't know the full plan. I know Nathan will be transplanted on the 21st, but I don't know is if we will be admitted Friday or Monday. I am nervous for the transplant. Surgery is scary, we have gone though over 30 of them. It's hard having a sick child. He is a happy child, but that's because this is all he knows. Nathan will vomit and two seconds later have a big smile. It breaks my heart. Nathan is a strong child and if he can fight though this, so can I.
I had a very hard time sleeping. I just kept thinking that tomorrow this time it will be transplant day. That I will be so scared and excited to start a new life, hopefully an improved one. I have been unable to work and my husband lost his job to care for our other two children while I was at the hospital with Nathan. All these emotions have me very tired and just wanting all of it to be over. We have gone though this before. We met Chris, his first donor, on his last day in the hospital and I can't even explain the emotion in that it was so amazing to meet the person who just gave your child another chance. I will never forget what he did for Nathan.
Today it is so quiet I can feel the excitement. I feel like my Nathan is going to be a new man thanks to a stranger. A person with a big heart to save another person's life and give him another chance. As I sit here listening to Nathan sleep, it makes me want to cry, because I know next week this time, yes he will be in pain, but he won't have to be on dialysis. He won't feel so ill and he will start growing and maybe even eat something. My boy is a fighter but I don't want him to have to fight anymore. I want him to be and feel like other kids his age.
Today has been stressful. Nathan got his hemo line placed in his neck, but it is so close to his face it makes you sad to see it. When he turns, his neck hurts. Nathan has been a little crabby due to surgery and a lot of people in and out of the room. He did get his first plasmapheresis treatment which went OK. He is strong which keeps me strong. I will keep fighting for him no matter what it takes.
I am getting excited as I am told more of the plan for tomorrow. I am still very scared and nervous. Having your child go into surgery is hard. I am thinking a lot about Nathan's donor, how happy I am he is doing this for my boy and how strong he is to go though surgery. I'm happy his family was on his side for him to do this. I hope he has a fast and great surgery and recovery. I am ready for this day to come and for Nathan to have a brighter and more active future feeling great. I am ready to say goodbye to vomit.