A long day
Eden did not want to get out of bed today. She was very whiny and every little thing hurt and made her cry. She had breakfast and took her meds and we headed for the clinic. I had hoped that she would sleep in the car, but she stayed awake.
She was very clingy and tired while in the clinic, but not as whiny. She mostly just laid in my lap watching people come and go. She decided that she wanted her port accessed instead of a finger poke. She told me that her finger hurts for a long time after a finger poke and if we weren't in a really big hurry that she would really like to not get her finger poked. She seemed to perk up a little after I assured it that she could be in charge of deciding which way to give her blood.
She did her vitals and then we headed in to be accessed and to have blood drawn. After she got all done, we had an hour to wait for results. Guess what Eden wanted to do? Yep, you guessed it: she wanted to eat breakfast again. So we headed down to Food 4 Thought and had more food.
Back to clinic to learn that her platelets were low. 19,000 is a cruddy number to hear. She settled in to wait for the platelets to arrive by making a craft with Mary, a super nice volunteer. The stuff arrived and we discovered that her port wasn't working properly, so Stephanie had to really worked to get those platelets in her. After a while the platelets were in and we left.
Eden waited patiently in the PICU waiting room, while I quickly ran in to visit with Jaret Cerino's dad, Guy. I wanted to check in on our little buddy who is having such a rough week. She felt so funky that she just didn't seem to care. The receptionist kept an eye on Eden for me.
Jaret just recently had the same treatment that Eden will be going to Philly to have next month. He became platelet dependant and had to have MANY transfusions of platelets and red blood in the last two months. He got his stem cells back on the day that Eden finished her recent stem cell harvest. He had some issues over the weekend and had to be brought in for treatment. Check out his website for more details: the links is in the Links area in the upper right hand corner of this page.
Let me tell you that it is a terrifying thing to see that sweet, wonderful little boy under sedation, hooked up to a respirator and obviously very uncomfortable. They had to restrain his little hands and he just kind of flopped his arms and one leg around. I cannot imagine what he parents feel right now. PLEASE pray for Jaret to bounce back from this quickly and for strength for Guy and Tina as they support him through yet another difficult time in his treatment. My heart breaks to see him so down. I wish there was something that I could do, but I cannot imagine what it might be.
We have been so blessed and lucky through all of Eden's treatments and I think we take for granted how very lucky we have been. She is such a trooper and so strong and her body has taken so much abuse that I just cannot believe that she hasn't started falling apart!
Please, please pray for Eden to have a great MIBG experience, Pray for Jaret to have a quick resolution and pray for all of the parents who should never have to see their children through this cancer hell.
P. S. We didn't go to the zoo today as I had planned. Eden felt pretty bad all afternoon and took a three hour nap. She was back into bed around 10 PM tonight. The poor thing is not doing as well as we have seen in the past, but I guess it's just all catching up to her.