Mattie woke up early this morning. He was greeted by Anna, his physical therapist. Mattie did not want to get out of bed or work with Anna. So Anna left the room and said she would come back in the afternoon. However, after Anna left, Mattie decided that he did want to get out of bed, so I called Anna back in to work with us. Anna helped me transfer Mattie out of bed, and then Mattie literally walked around the bed to sit in the wheelchair. This sounds easy enough doesn't it? But to a child hooked up to every possible machine, whose right arm is heavily wrapped from surgery, and who has been sleeping in bed in a very contorted position, walking is challenging. But he did it! I find when Mattie is determined and motivated (and thank goodness he is a self starter), he can accomplish anything. While sitting in the wheelchair, Anna commended him for a job well done. Then Anna was telling me what we could do for his right hand to bring down the swelling and start moving his fingers. Anna demonstrated on my hand how I could massage Mattie's right hand. I am telling you this, because guess what Mattie initiated on his own today? I observed him massaging his right hand, using his left hand. He was massaging his hand using the technique Anna demonstrated on me. I consider this a VERY positive sign. Mattie appears to be interested in taking a strong role in his recovery process. This was a wonderful sight to see.
After Anna's session with Mattie, Jessie (our art therapist) came by with a very creative activity for Mattie. She brought up a toy plastic claw and a box of beautiful stones. The object of the game was to use the claw to grab at stones. He and Jesse were having a great time doing this, until our nurse Katherine came in to tell Mattie he needed a glucose test, which entailed a simple prick of his finger to draw blood. What seemed to be a simple request became very frightening to Mattie. After about 45 minutes of rationalizing with Mattie, I felt he was just too frightened to undergo the finger prick. In fact, he said, "Mommy please don't" let this happen." So I asked Katherine if we could draw blood from Sparky (Mattie's central line) instead. The PICU tends to avoid using the central line because of infection reasons, but Katherine was kind enough to understand and appreciate Mattie's feelings. After the blood test, Mattie was visited by another favorite volunteer, Sally... the Story Lady. Sally has a special gift for telling a story and bringing it alive. She shared the "Widow's Broom" with Mattie today, an adorable and spooky Halloween story! Mattie loved it and Sally also invited Mattie to be an actor in her play she is performing at the hospital in January. Sally captivates both young and old!
Linda was very instrumental, once again, in helping Mattie today. She helped me talk with him as we prepared him for his arm dressing change this evening. Interestingly enough Mattie thought if the dressing on his arm came off, that his skin would open up and expose his bone. We explained to him the concept of stitches. It appears to me that the more prepared Mattie is for things, the better he handles them. In fact, he actually asks very intelligent questions about the procedures.
Linda played with Mattie while I went outside for lunch. It is lovely to be able to sit in the sun and breathe fresh air for an hour or so. Alison came today and delivered me a wonderful lunch and we had a lovely conversation together. I am so enjoying this opportunity to get to know Alison and hear her perspective on things. The irony is that Alison and I are very busy moms, and we did not get the chance to know each other at SSSAS last year. But circumstances brought us together this year, and this is another example of what Mattie's illness has done for me. Out of great sadness comes some very happy moments and friendships. Alison and I always joke about what day and month it is, because she knows that since I live more in the hospital than at home, I am pretty much disconnected from reality and the outside world. Part of this disconnection, I feel, is also for self preservation, because there is so much information and interactions one can handle when dealing with such a crisis. Thanks Alison for the wonderful lunch and for the sling buddy (a cute ghost that will attach to Mattie's sling). But most importantly thank you for the happy meal. As soon as Mattie awoke this morning he let me know he wanted a happy meal and a McDonald's apple pie. Go figure, but we accomodate all cravings here!
My parents spent part of the afternoon with Mattie, and when I returned to the room, I saw that they were all working on a project with Jessie. They designed an incredible car garage that held 17 cars! Thanks Jessie for this creative project, which enabled Mattie to use his hand and imagination. We consider ourselves incredibly lucky that Linda, Jenny, Jessie, Whitney, and Lesley can tag team and work with Mattie. This incredible individual attention is what makes Georgetown a unique institution. In the midst of all of this, Mattie has a fan club. His "Big Brother," Jey came to visit him. Jey is a CT scan tech and has grown very fond of Mattie. Jey brought Mattie a lovely ambulance hotwheel today, and he added it to his garage he built. In addition, Mattie was visited by Debbi (our sedation angel, as I call her), Kathleen (a wonderful Hem/Onc nurse), CR (another wonderful Hem/Onc nurse who will be leaving Georgetown soon to serve as a traveling nurse in Africa), and Denise (our social worker). I imagine every oncology patient around the country feels a special connection to their oncology team, but I must say, this is like home away from home for us, and I don't say this lightly. I truly feel that these individuals are invested in Mattie, us, and his recovery.
Mattie seemed pretty motivated to go to the childlife room this afternoon. However, the PICU staff felt that Mattie shouldn't go to this room without a nurse present, since the day before while in the room, Mattie overtaxed himself and his heart rate went up. Thankfully Katherine arranged her schedule so she could accomodate Mattie's trip to the childlife room this afternoon. That was very thoughtful and gracious of her. Before heading to the room, we had two visitors. The first visitor was Chris, who is a student at Georgetown and a member of the chemistry club. Chris came to Mattie's room and showed him how to make Gack. Gack literally looks and feels like slime. It is made with glue, water, and borax. Mattie had a great time with Chris, and is looking forward to Chris' demonstration tomorrow of how to make ice cream using liquid nitrogen. Below you will see a picture of Mattie with Chris. They were having a gack racing contest. Whose gack could hit the plate first?
Mattie's second visitor, was Dr. Jeff Toretsky, Mattie's oncologist. Jeff was introduced to Mattie's interpretion of "Stinky Cheese Man." Mattie did not make up this character it is from a book. In any case, Mattie and Jeff had a whole dialogue about Stinky Cheese Man that continued into the childlife playroom. While in the playroom, Mattie obtained a huge truck (Mattie has a knack for doing this!). Fortunately Jeff was around, because I had no idea how the truck parts went together. In the midst of all of this Jeff was telling jokes and trying to make the mood lighter. I keep telling him he missed his other calling, because he is like an oncologist by day, and a comedian by night?! Or maybe all oncologists need a sense of humor in order to be able to do the work that they do, because having lived it for 10+ weeks, there are some very grim moments. Below you will see a picture of Mattie with his "Stinky Cheese Man" figure he designed.
Mattie's current food of choice this week, if you call it a food, is potato chips. I snapped a picture of Mattie eating a bag of chips today, and to me, he could be the poster child for Utz potato chips. To me the picture captured just how much he loves eating them.
Later this afternoon, Mattie had a visit from Dr. Bob Henshaw. Bob came to change Mattie's arm dressing, and in the process Dr. Gonzalez came to take the stitches out of Mattie's central line (stitches that have been there since August). Mattie was given some extra Fentenol to help with the pain that could be caused from the dressing change. Mattie handled the dressing change like a champ! In fact, he seemed interested to know what was under the bandages. Mattie made me laugh though. During the dressing change process, he turns to Bob and Mattie says to him, "are you sure you should be doing this?" I started laughing and Bob seriously answered Mattie's question. I guess in a hospital, Mattie has learned you can't be too sure, so why not ask? Bob was very pleased with how the incision looked and in the midst of all of this, Peter pulls out the hard copies of the pictures Bob took during Mattie's surgery. Mattie loved seeing the R rated pictures, and before I knew it, Mattie was flashing them in my face. I think he got a kick out of my reaction to it, and the more I told him I did not want to see them, the more confident and fascinated he became in these surgical photos. Needless to say, I am so impressed with Mattie, and can't get over how well he is handling a challenging situation.
Dr. Gonzalez came upstairs from the clinic today to remove Mattie's central line stitches. This literally looked like mission impossible because these stitches have been there since August and were intertwined with his skin. But she kept at it, and was very delicate and mindful of Mattie's fear. Needless to say, Bob and Dr. Gonzalez made all of this look easy, and I found myself getting nervous for Mattie this afternoon as all of this was pending. However, all my fears were allievated this evening. After the dressing changes, Mattie was assisted into bed, watched a little Scooby Doo, ate some pasta, and fell asleep.
While he was resting, I joined an association conference call tonight. At the end of the call, my colleagues asked how Mattie was doing and how I was doing. I told them that the conference call was actually a good diversion for me tonight. They laughed and said, don't you know we schedule these calls just to provide you with this kind of relief. It made me laugh, because I know this isn't the case, but the fact that they were trying to lighten the mood made me laugh.
I would like to share two e-mails with you tonight. One if from Bill S. I have had the opportunity to become acquainted with Bill through a mutual friend. Bill lost his son to osteosarcoma. Despite the tremendous loss and grief he is contending with over this horrible disease, Bill finds the strength within to reach out and help me, and follow Mattie's blog. Bill writes to me periodically. After reading my blog last night, he felt compelled to respond regarding the anger I have been feeling. Bill wrote, "The squeaky wheel gets the grease or in our terms the screaming mom gets things done!! You should write a book, you are a great writer on the blog. I'm sure it's theraputic for you also." Thank you Bill for helping me and for supporting Mattie.
The second e-mail is from my friend, Susan S. Susan wrote, "Do you know how utterly gracious you are? With all you have going on with Mattie, those of us who are supposed to be supporting you continually are blessed by you!!!" I believe posting friend and family comments on the blog is very helpful and insightful, and in a way, your perspectives and insights are a very valuable part of this cancer journey for me. Though Peter and I own the blog (as you will see I have copyrighted it!), I feel that this blog belongs to the whole Team Mattie community. We share the highs and lows together, and process these things together.
Thank you Joan Holden, Head of SSSAS, for your continued calls of support and love as they do make a difference to us! On the electronic front, we want to thank Kim J. (Brandon’s aunt; Brandon is Mattie's big buddy here on the floor), JJ (our canine friend), and Brian Boru (our feline friend) for their e-mails and Karen, Lorraine, and Susan for your e-cards. I also want to thank Anand (Peter's colleague at Voxiva) for the beautiful olive wood carving he brought back for us from Israel. This is a very special gift, it is a carving of the holy family, and the way the carving is done, it reminds me of Peter and I holding Mattie through this illness. We also thank the Bires family for dinner tonight. The sweet treats were incredible. As I conclude tonight's blog, it is 11:15pm, and Mattie is up and eating!
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