Quote of the day (Thanks Charlie!): "Life is not a matter of holding good cards, but sometimes, playing a poor hand well." -- Jack London
I think you and Pete (and Mattie) have done this about as well as it can be done!
Well I would report to you about Mattie's sleeping pattern on wednesday night, but by now you are seeing a pattern to our week, and can probably guess how much sleep (or lack there of) we got last night! Mattie got up this morning and was very happy that he had a full day of halloween activities ahead of him at the hospital. It is ironic, the hospital has now become our safe ground, and the place where Mattie has his social connections. These are social connections that don't judge him, understand his limitations, and embrace his attitude about life.
If you have been to Georgetown Hospital, then you will completely understand what I mean, when I tell you that parking here can be very challenging. I was ready to drive the car right inside the hospital today. Everything about this process is impossible, and the only thing I could think of, is how on earth will I manage this whole car and parking situation when Mattie is immobile? I realize there is an answer and solution for every problem, but I am thinking ahead to avoid some possible challenges.
Mattie arrived at the childlife playroom, and was greeted by a whole host of medical staff and of course Linda and Whitney. Mattie was visably thrilled to see Linda. Mattie started the morning by meeting and interacting with several Georgetown University sport team members. These team members hosted a paint a pumpkin activity, and Mattie took this fun to a new level. I would like to introduce you to Mattie's new creation, "Handsome!" Handsome is a pumpkin head (which he painted) with a black cape. Below you will see some fun pictures from the morning event.
Mattie, Daniella, and Jey (Mattie's 'big brother')
Mattie and Whitney!
A close up of Handsome's head!
Daniella, Mattie, and MaryBeth! They both enjoyed working with Mattie today.
Mattie, Vicki, and Handsome!While Mattie was involved in this morning's wonderful activity, my mom stayed with him and took pictures. I on the other hand missed out on watching Mattie having fun. Why you ask? Because I went down to the Lombardi Cancer Clinic to meet with Dr. Jeff Toretsky (Mattie's oncologist). All I can say is this was not the day I expected (mind you I am getting used to this feeling!). I thought it was going to be a fun day where Mattie could play and prepare for Halloween. However, 45 minutes before I left our home this morning I found out that Dr. Jeff Toretsky wanted to meet with Peter and I before he left on his trip to Israel. I of course could attend this LAST minute meeting, but there was NO way Peter could shift his business schedule around to meet Jeff's travel timeline. Why the meeting? Well the pathology report was in from Mattie's right humerus surgery and Jeff wanted to share the results. The report details the percentage of necrosis. Necrosis means the pathologic death of one of more cells. The percentage of necrosis in primary osteosarcoma, after the patient receives preoperative chemotherapy, is prognostic and is usually used to select subsequent chemotherapy. Mattie has been involved in a clinical trial at the hospital, which involves different treatment options post-surgery. What dictates the type of post-operative chemo Mattie will receive has a lot to do with the percentage of necrosis at the time of surgery. For example if Mattie has a percentage of necrosis of 90 or above, this would be considered a 'positive response' to preoperative chemotherapy and he would be randomized to one of two treatment options in the trial. However, if the percentage of necrosis is under 90 this would be considered a 'poor response' to preoperative chemotherapy and he would be randomized to one of two different treatment options (from the positive response treatments) in the trial. We have been VERY focused on percentage of necrosis since we began this clinical trial, after all why wouldn't we, since this is a crucial component to the study's questions and design. When Peter and I went up to Sloan Kettering a month ago, the oncologist there told us we were too concerned about the percentage of necrosis, which was totally contrary to what we had learned up until that point. Needless to say, the moment of truth was here today, where I would hear about Mattie's percentage of necrosis. In many ways I feel like I have the ability to assess situations and people rather quickly, and before I even heard the percentage of necrosis in Mattie's right arm, I could tell it wasn't going to be good, or what we hoped for. I learned today that Mattie's percentage of necrosis was 60%, which means that 40% of the tumor was viable at the time of surgery. From my limited understanding of percentage of necrosis, these levels seem to be tied into prognosis and chance of survival. It clearly also dictates postsurgery chemo options. One thing is for certain though is that Mattie needs to get back on chemo soon, because the longer he is off of it, the chances are that any lone tumor cells floating about his body can find a nice home in another location. I have a feeling this is why Dr. Bob Henshaw is advocating for Mattie's next surgery to address the remaining three tumors at one time. Mattie is unable to go back on cisplatin and doxorubicin until all the surgeries are completed. The reasoning is these drugs are too debilitating, and if Mattie goes on them, he likely heads right into neutropenia, and needs time to stabilize before he could undergo surgery. So theoretically it makes perfect sense to remove all the tumors safely at once, and then have Mattie recover and go right back on his chemo regimen. Needless to say after this meeting, my head was spinning. It is funny how you can go from despair in one minute, to anger and an unwillingness to give up the fight in the next minute. It is the cancer rollercoaster, and I would like to return my ticket because I am not enjoying the ride.
When I arrived back at the childlife playroom, Mattie was having a ball. He then took a lunch break and we visited the clinic and he had his weekly check up. Mattie is doing fine weight wise and Kathy (Mattie's nurse practitioner) was very impressed with the strength Mattie has gained back in his right hand.
After this visit, Mattie returned to the childlife playroom, escorted by Linda. Mattie had the opportunity to meet several Georgetown medical students, who volunteered their time to entertain the kids today. The students were lovely and I found out they are all interested in pediatrics. Definitely a good match, since they were delightful and FUN! Lord knows I needed fun today. Mattie made a cupcake and a halloween trick or treat bag during this afternoon's activities. All the medical students dressed up today and Brandon (Mattie's big buddy) shared his orange hairspray with the med students, and helped transform one fellow into a pumpkin. We all got a chuckle out of this. See some fun pictures below.
Thomas (med student), Brandon, Mattie, and Hannah (med student)
Mattie's cupcake creation!Mattie was invited back to the clinic today by Jenny so that he could select a costume for Halloween. There was a room completely filled in the clinic with new costumes, donated by Hope for Henry (a local foundation named after Henry, a boy who died after a fight with cancer). Mattie originally wanted to be a haunted house for Halloween and even designed his own house out of a box, but because of his arm, I think he deduced that such a costume wouldn't be practical. So he instead selected a great and comfortable costume. It was the only one like that in the room, and it fits him like a charm. Mattie will be a mummy for Halloween. Below is a picture I took of Mattie dressed in his costume while he was riding the elevator.
Toward the end of the day, Mattie had a visit from Charlotte. Charlotte came to the hospital to decorate cupcakes as well as decorate the hallways with Mattie. Charlotte got a kick out of the med students all dressed up, and I snapped a picture of Charlotte telling one of the students about her dog, Nelson. She was imitating how Nelson barks, and I caught her in mid motion. I know how much Mattie loves playing with Charlotte, and she has been a great friend through all of Mattie's ups and downs. My mom told me that at one point while Mattie was playing with Charlotte today, Mattie got upset. When she asked him why he was upset, he told her he was upset because he can't play like Charlotte anymore. He pointed and said he couldn't physically do what she could do. It is moments like this that are bittersweet, and further confirms just how different our lives are now.
Charlotte and Mattie!After a long day, it was lovely to come home to a tasty dinner. We want to thank Kathy Brown and her family for a lovely dinner. We all loved the pasta and Mattie can't get enough of the pumpkin icecream. Thank you for introducing us to the Dairy Godmother icecream store. The icecream is delicious. We are a big pumpkin food family! Thank you for packing it so well, it stayed cold and solid the entire time we were away today. We also loved your leaf rubbings! Thank you Julia Lee for also dropping off your homemade pasta sauce for us to use throughout the weekend. That was very thoughtful of you! It will go to good use.
I received a lovely e-mail today from Julia (a friend and RCC mom). Julia wrote, "I think it's actually awesome that you and Mattie are able to have fun and have connected with people at the hospital. One of the amazing things you have done for Mattie is create a community for him there. He's a great kid, and people are drawn to him. But you also gather people around him who he can trust and give him cues to let him know that they are worth knowing. You've continued to be a great mom in an extraordinary situation/environment. Cheers to you!"
On the electronic front, we want to thank Lorraine and Brian Boru for their wonderful e-cards. I also want to thank Ms. Debbie Pollak for all the great "how to" videos she sent along to Mattie today. This is right up his alley. Debbie is always looking out for Mattie, and it is greatly appreciated. Mattie also received a lovely halloween surprise from Caroline C (from SSSAS). Thank you Caroline for the great ghost and bat! Mattie loves them.
I end tonight with an incredible picture from last weekend's bake sale. Some of you may recall that it poured last saturday, but that did not stop Team Mattie. Thank you for going the extra mile and for supporting us through all kinds of weather.
Thank you Ann Henshaw, Carrie Barone, Ann Kim, Vonnique Van Way, Mark Dowling, Sean Dowling, and Danelle Fortune for the successful bake sale!
1 comment:
Hi, Folks!
Have a great Halloween!
About the parking, once Mattie has his leg tumor removed, you can get a temporary handicapped parking permit which will probably help a lot.
I am a member of the ACOR osteo listserve and people post all the time about percent of necrosis concerns. The upshot of the general response is that this doesn't always seem to matter as much as you might think. There are kids who have a 100% response and relapse a few months after treatment even though this response is supposed to be good. There are other kids who have a much poorer response who do very well. I'm not saying that it doesn't matter, but I do think you shouldn't read too much into this.
Hang in there!
Lauren
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