Monday, December 15, 2008

Monday, December 15, 2008

Quote of the day from Peter! "The difference between the impossible and the possible lies in a person's determination." ~ Tommy Lasorda

Well I can't think of any two people more determined than Peter and I right now. If determination really could accomplish the impossible (a cure for osteosarcoma) we would be the poster family for the disease. Or so I feel.

Mattie went to bed at 1am and slept fairly well through the night. He was up several times to go to the bathroom (Which is a figurative statement, since Mattie still has trouble moving, and uses a urinal in bed. I just felt the need to clarify that because going to the bathroom sounds like such an independent thing!) and then had his 4am blood draws. Now you have to ask yourself, what nut selects this time to draw blood. Do you think a child can sleep through a blood draw? Do you think a family doesn't hear a nurse come in and try to do this (even though the nurses are fabulous and tip toe around)? I know why blood draws are done at 4am, it is simple. It is convenient for the doctors. They want the results ready at hand when they round at 8am. God forbid decisions are made that would be beneficial for the mental health of the patient and his/her family. Mental health within a PICU is SO LOW on the priority list, it is disgusting. Even if you weren't sick when you entered this facility, the sheer fact that sleep can't happen on a hospital schedule, sets you on a sure path of becoming sick.

Mattie slept in this morning. He did not get up until 11am. It was totally unheard of. But I think between the anxiety medication and the stomach medication, it is helping to calm him down a bit. Mattie woke up with the idea of opening up presents. There were several in the room for him to open. We want to thank the Doane's for the wonderful air craft sets. We are going to love setting those off. They are made out of foam, so we can easily do them in Mattie's hospital room. Mattie also received a beautiful pop up book from his cousins (Nat, Sydney, and Will) entitled, "Christmas around the world." It was so special and put Mattie in the holiday spirit. It was lovely to see in 3-D how others around the world celebrate and decorate for Christmas. Mattie also received a gift from his great aunt Gloria. Mattie loves his living aquarium animated ocean lamp. It has been going in our room all day, and it is mesmorizing. We also want to thank Gloria for the special mass being said on Mattie's behalf at our Lady of Lourdes in France.

As the morning moved along Mattie chose to watch "Snow Buddies," which is a cute movie! We watched it and during the movie we had a visit from Alison who brought me a wonderful lunch as well as a happy meal and a shake for Mattie. Mattie did drink a small portion of the shake and a whole apple pie. But that has been it for the day for him. He refuses much else, even though I offer him a ton of different choices of food. Frankly I don't care what he eats as long as he eats. Mattie was very upset that Alison and I were talking. He stopped us several times, and Alison decided to leave so that Mattie could watch his movie with me alone. Which is what his ultimate goal was. It saddens me that I am unable to have a conversation during the day, that for most days I can't leave the room for long, and that Mattie has become so dependent and anxious. It isn't easy to see your child transform before your eyes. Thank you Alison for the hysterical chocolate bar which reads, "Christmas can be a difficult time....." It is sad but true, for so many the holidays are not necessarily happy times, but painful ones. I can relate to the pain this year. I am not the grinch who stole Christmas or Ebenezer Scrooge, but frankly this holiday could come and go this year, and I wouldn't know the difference. Christmas is a magical time normally, a time of reflection, and a time to celebrate Christ's birth. However, the only energy I can expend this holiday season is on keeping it together and watching out for Mattie. That may sound strange or depressing, but unfortunately it is the reality.

Peter and I have been talking about Mattie's treatment plan and next steps. We have reached out to Nita Siebel and others again for their perspective. We feel it is crucial to understand what our options are before Mattie's next scan. Because we are dealing with such unique issues, we both feel the more heads and experts working together the better. So in the midst of balancing the day to day stresses we are also thinking of the long term issues we will have to face.

Later this afternoon, Linda came and sat with Mattie for a while to work on his Christmas house. The house is coming along quite nicely. While Linda was with Mattie, I went to sit in the hallway for a while. I was gone about 20 minutes, and then I heard screaming and crying. At first I thought it was a baby in the PICU, but the more I focused on the crying I realized it was Mattie. It is a real issue, because I feel as if I can't leave for too long or go that far away because Mattie can work himself up so. After I calmed him down, he had a visit from Jenny and Jessie. Jenny helped us create a good-bye card for Mattie to give to Grammie and Pop Pop. I helped Mattie complete the card and put stickers on it. Jessie and I then worked with Mattie on creating gross things (e.g., a rat, a roach, a snake, etc). Mattie proceeded to attack me with all these creepy crawling things. He thought that was a riot!

My parents came by to say good-bye to Mattie and brought with them some challenging puzzles for him to do. He sat with them for a while and did a puzzle while I sat in the hallway. While in the hallway, I had a nice conversation with Lesley and Whitney and I told them we were going to miss them when they leave on friday (their last day of internship). They are such warm, bright, and caring individuals, and it will be a shame to see them go. This week is the week of good-byes and changes. Things I particularly did not care for before Mattie's illness, but now I can assure you, I can't stand such changes. You need safety and security around you in such times of crisis. I now get Maslow's (a humanistic psychologist) hierarchy of needs more so than ever before!

We said good-bye to my parents tonight and I have to say it hit me hard. It just seems to magnify the isolation some how. We want to thank the Murphy family for a lovely dinner. Thank you for hand delivering it and for all your support! After dinner, I decided to do laundry. One of my favorite things to do now, because it gets me out of the hospital room. While in the parent lounge, I bumped into a fellow HEM/ONC mom. I spoke with this mom for an hour and she was telling me how horribly she is being treated and how the staff at the hospital are making her feel stupid for wanting to spend every moment by her daughter's side. Mind you her daughter is critical, and is on life support. I was so insensed by her story, how she is being treated, and I could go on. I told her nothing about this situation was her fault, and the fact that she wants to spend this time close to her daughter is 100% natural. If others are giving her a hard time, the problem lies with them! Well you know I couldn't leave it alone. When I see an injustice, I mobilize forces. I asked her if she spoke to Julie Andrews at the hospital. Julie is our patient advocate and knows how to get people jumping. The mom was too distraught to call but asked if I would. So when I got back to Mattie's room tonight, I left Julie a detailed message. But why on earth would the hospital staff do this to a woman who is in the process of losing her daughter? There really isn't any answer, but sometimes I feel like I am on a crusade to education doctors and residents. I know I have other fish to fry, but some how helping others even in this time, makes me feel better.

So when are we getting out of the hospital?! Great question. Mattie's counts are still zero today. Dr. Toretsky is suggesting that Mattie's counts may begin to rise on thursday, and he probably could go home this weekend. Great timing, no? Just in time to come back on monday for chemotherapy! What a life on so many levels. I want to thank all of you for e-mailing, checking the blog, sending gifts and cards, and for staying connected with us through this journey. These simple acts of kindness make a world of difference to us.