Message for the day (Thanks Ann!): "Hope does not disappoint." Romans 5:5-11
Mattie had another restless night of sleep, but I am happy to report no nightmares! He is so conditioned now to get up every couple of hours, that it is just a part of our lives now. It makes no sense to even try to work with him on this from my perspective, because in all reality he will just be re-exposed to this sleeping pattern in the hospital. Mattie woke up today with a plan in mind. He collected two packing boxes and other materials and designed his own version of a puppy. "Cardboard puppy" is our newest member to our house. You can see him below.
Mattie had a fun day planned with his preschool buddy, Alex. We met Alex and his family at the Classika Theatre in Arlington, and we watched together a wonderful play called "The Classical Fool." It is a wonderful pantomine piece, and it reminded me of the movies I used to love with the Marx brothers. Telling a wonderful tale without the use of words, just through actions and facial expressions. It is a lost art, but one that appeals to people of all ages. When Mattie met up with Alex, Mattie was a bit grumpy and in a way I notice he shuts down in new situations. But Alex did not skip a beat, and just went with it. In time, as the play began, and Mattie began to laugh, I could see the Mattie I know resurface. It takes longer these days to pull Mattie out of the secure inner world he places himself. But I understand where this is coming from, and I deal with whatever he needs to do to feel protected. However, humor is a wonderful way to forget your troubles and to escape one's problems for a little while. We all enjoyed the play and I am so glad Julie (Alex's mom) suggested this to me. Seems to me the HEM/ONC unit needs to have humor integrated into the lives of its families. It is a cost effective way to positively impact us.
After the play, Mattie went home with Alex, and Peter and I went out to lunch together. It has been a while since Peter and I have had a moment together to just catch up and process what is going on in our lives. So this lunch was a major gift. Peter and I talked about our next steps in Mattie's cancer treatment. We have already made an appointment with Dr. Nita Siebel, at NIH, for tuesday. Nita also plans on putting us in touch with other osteosarcoma folks at NIH and the City of Hope in Los Angeles. Peter and I are finding there are at least two different camps of thinking as it comes to percentage of necrosis. I may not have made this clear in previous blogs, but percentage of necrosis can only be determined through the pathology of a bone post-surgery. In any case, one camp of thinking is that percentage of necrosis doesn't matter (The research shows mixed results. It isn't a guanrantee that >90% necrosis will lead to a good survival rate. In fact the research indicates that >90% necrosis can at times lead to a poor survival rate, and vice verse, that <90% necrosis can lead to a good survival rate. So in essence, the percentage of necrosis is vague at best at being an outcome predictor.) and the other camp believes that the percentage of necrosis is important and will dictate the form of post-surgery chemotherapy. What is concerning Peter and I is that we are getting such different opinions about how to proceed, and we feel we need to get smart on both camps before making a final decision about Mattie's post-surgery chemo regimen. In essence doctors can advise us, but in the end it is Peter and I who make Mattie's final treatment decision. It seems like a lot to bear at this point, but it seems to go with the territory. One thing is for certain though, Peter and I have elected to remove Mattie from the clinical trial he is on at Georgetown, and we told Dr. Toretsky this earlier this week. I feel we can't leave it up to chance and randomization to select Mattie's post-surgery treatment. This decision needs to be an educated one that is tailored toward Mattie's needs. I am all for enhancing research and providing data in theory, but at this point, when I can clearly see that the study won't benefit Mattie, then I feel it is our right to do what is in Mattie's best interest.
Having the opportunity to talk with Peter without interruptions and jumping up and down, is important. We constantly operate in crisis mode, that moments like this now seem almost unnatural to us. The irony is we thought our lives were busy before all this, but we had no idea what busy and totally exhausted means until osteosarcoma hit our lives. When we arrived back at Alex's home this afternoon, we found Mattie and Alex having a great time together with trains and building forts (one of their favorite past times!). Below you will see a picture of Mattie and Alex defending their fort, and Julie and I being attacked. Thank you Julie and Rob for arranging the play and playdate today! It was a hit with all three of us. Thank you also for the Hiss game and the Wikki sticks. We will have fun playing with these!
We prepared Mattie for his return to the hospital tomorrow. He wasn't happy to hear about this, and we explained that chemo probably wouldn't be completed until the spring or summer. That helped him get some idea of the length of time we are talking about, and Mattie also asked about when the three remaining parts would be operated on. So I think he is getting the plan quite well. Mattie had the opportunity to come home and open up some of the packages we have been saving for him. Peter and I save them for certain moments when needed. We want to thank Alex for his creative Halloween card, and our Cousin Mary S. for the wonderful Halloween gifts. We particularly love the special glow in the dark trick or treat bag! This will be a very popular bag next year! Thanks for the chips too, they are coming with us to the hospital tomorrow. Thank you Brian Boru (our feline friend) for the spaceship, knex, dinos, and football flashlight. You are quite a special cat with GOOD taste. Thank you Grandma for the telescope, dino DVD, and the special treasure map from your recent musical at school. Mattie loved hearing that you named a pirate in the play after him! Thank you Jodi H., an RCC mom, for coordinating two classroom gifts to Mattie. We thank the Block room and the Playhouse room for the wonderful dino books given to Mattie. That was very special of both rooms, especially since we have never officially met each other. But I realize we are bonded together through our RCC family.
We want to thank the Doane family for the wonderful dinner tonight from Clyde's. One of our family's favorites. By the way, Mattie drank the entire shake you got him, so your search for a McDonald's making shakes tonight was worth it! Thank you for thinking of him and for the wonderful Star Wars sticker book. As always you spoil us. I do not want Team Mattie to think we take these dinners for granted. We so appreciate Ann's tireless efforts to coordinate the meals, and all the generosity of each family for bringing us food every day of the week. What an unbelievable and loving group you are!
On the electronic front, thank you Grammie for the great pictures and Brian Boru for the wonderful e-card. With the last couple of days I received e-mails from many of the wonderful moms I have met through this ordeal. These are moms of osteosarcoma survivors and/or patients, and their words of support and wisdom are so appreciated. Isn't it amazing how we can feel so connected to each other, and we have never met one another in person!? As we settle down for the evening, I still have to do a dressing change of Mattie's central line, heparinize his central lines, and connect him up to an IV fluid line. No problem, right?! Amazing what you get used to doing.
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