Quote of the day: "Nature speaks to us through our senses in ways that are unique to each of us. Whether it's through vision, feelings, inner impressions, insights or in other ways, we exchange energy with nature all the time. Our senses, both inner and outer provide pathways that help us to integrate and make use of it all." ~ Leslie Montana
Mattie had trouble waking up this morning. In fact, I woke him up at 10:30am, because we were scheduled to get admitted to the PICU at 11am. I quickly got Mattie dressed and gave him his oatmeal. Normally he would be upset with this rushed process, but I think he understood I was in no mood for any of this today. Mattie and I were about to walk out the door around 11am, when the phone rang. I stopped and went to answer it. It was Jeff Turner, our HEM/ONC nurse manager. He told me that he wasn't happy with the room we were assigned in the PICU, and asked if I would mind waiting until 1pm, when a better room would open up. Jeff told me he could give us room 6. I had always heard about room 6 from Brandon and his mom, but never actually stayed in it. So I told Jeff that we would wait. It was nice of him to call us and to look out for us! The beauty of room 6 is that it has a private shower (WOW!) and an anteroom. The anteroom is an interim room between the hallway and Mattie's room, and an anteroom is needed for patients in isolation, so hospital personnel can come in and get gowns and masks on. In any case, we don't need it for this purpose but for us the anteroom serves as a fabulous closet for a wheelchair, commode, and walker!
So Mattie and I waited until around 12:30pm before we left our home. In the mean time, I communicated back and forth in the morning with Laurie. Laurie is a SSSAS mom and was our point person to help us today. Laurie offered to take us to the hospital and to run errands for us today. However, I had already packed our car, but I so appreciated her genuine offer to help us. When Mattie and I arrived in the PICU, we were greeted by nurses, Jeff, and other staff. Mary, a Lombardi clinic social worker came up to find me and to invite me to today's support group meeting for HEM/ONC parents. I missed last week's meeting. Some of you may recall that I have been on a mission since August for the hospital to create such a support group. In fact, Denise our social worker told me last week, that my suggestion was finally being acted upon. So needless to say I felt compelled to go today. I told Mary I would attend the group, if I could find Linda. I was able to find Linda, and I left to go to the group. Normally I wouldn't leave Mattie right after being admitted to the hospital. But two things are apparent. I trust Linda with Mattie and secondly, today I wasn't feeling like myself. In fact, today was the first day in seven months where I actually did not think I could make it through the day, much less take this pace for several more months. It was like I was hit by a brick wall today. It was at this point, that I knew I had to remove myself from the situation. I had an intense migraine all day, actually a migraine beyond migraines, and I feel simply fatigued. The kind of fatigue where you feel parts of yourself shutting down and being unable to function.
So I went to the support group and only one other mom was in attendance. I know this other mom well, since she is the mom with the baby who I reported was on life support several months ago. We must have talked for two hours. Clearly in a support group, people come in with different issues and needs to talk, but none the less, it was a wonderful way to get out of the room, and to hear how others are doing. So I would definitely go back again. When I got back from the meeting, Mattie was working with Linda. He was having a great time as usual. He designed a "Scary Snake" house for ALL the rubber snakes he brought from home. Linda helped him wire the house with lights as well. In fact, I would say Mattie was just ON today. He was happy, engaged, and animated. Many nurses commented to me about Mattie's mood change. In fact, Debbi (our sedation nurse angel) met up with me in the hallway and commented on how far Mattie has come since the Fall. Debbi has followed Mattie's case every step of the way, in all reality, Mattie has come such a long way from October and November, when he was post-surgery and dealing with intense anxiety. I told Debbi that I was given some feedback today from a doctor that I need to set boundardies for Mattie and provide him discipline and structure. All very true, children need structure and they thrive on it, and being sick doesn't change that need, but I can assure you that it is very challenging to discipline a child the same way you would if he did not have a life threatening illness. I would hope that a doctor could appreciate this. That some priorities do change. The doctor encouraged me to take time each day for myself (he feels I must do this, which is why the boundary and discipline issue was discussed). Great suggestion! But how does this free time happen, when you have a child who relies on you? I mentioned to Mary, the social worker today, that there needs to be formal programs for children here so as a parent I would know when I could drop Mattie off and he would be engaged for a certain period of time. This type of predictability would be helpful in a time in our lives where nothing is stable or certain. I think this would be beneficial for him as well. Any case, perhaps it was my level of tiredness and sensitivity, but these comments from the doctor today were more hurtful than helpful. As I was talking with Debbi about this feedback, her response was so helpful to me. Debbi said that Mattie is doing as well as he is doing psychologically because of me. I am his stability and rock. It meant a lot to hear this, because I believe Debbi is objective enough to tell me the truth. After all I wouldn't make such a large sacrifice if I did not think it was working and ultimately benefiting Mattie.
Linda paired Mattie up with volunteers today. Normally I would be in the room with Mattie while he was with a volunteer. But not today. Today, I stayed in Mattie's room and ate lunch. I had to separate from his incredible level of energy, because as Mattie is getting stronger (thankfully!), I am getting weaker. I can't handle this level of energy from morning to midnight, stay up through the night, and then perform this same incredible human feat the next day.
I want to thank Laurie Drysdale for a wonderful lunch today. I love the Caryle Grand's mango chicken salad. The irony is Peter was at the Caryle Grand restaurant today meeting with the coordinators of Mattie's Stomp it Out for a Cure walk. I can't thank Liz (the walk chair), Ann, Alison, and Tamra enough for devoting their time to this meeting. So the salad that Laurie brought me made me feel like I was at the meeting in spirit. We also want to thank Laurie for the wonderful gifts she brought Mattie. He loves the wind up fly, the DVD, the personalized water squeeze bottle, cupcakes, cookies, and all the great snacks. I of course thank you for the chocolate. We are so thankful for your generosity and look forward to getting to know your family better.
Later in the afternoon, I joined Mattie in the playroom. Mattie for the first time asked to play with the Wii. He played a fishing game, and was catching a ton of fish. Peter would have been proud of Mattie, because Peter taught Mattie how to fish and they used to spend many a saturday morning on the Potomac river, catching and releasing fish. Mattie did so well on this game today, that he received a bronze medal for fishing! He was very pleased with himself, and I was pleased to see him using his hands and arms. Linda is contemplating getting Wii Fit for the playroom, but it is hard to track down this game! In any case, I think Mattie would actually benefit from moving his body using this technology! Basically Wii fit contains 48 fitness training related games and activities
When Peter arrived tonight, I was thrilled to see him. Peter is equally as tired, but I couldn't manage functioning today. Peter played with Mattie in the childlife playroom for several hours tonight. The playroom was open tonight until 9pm. This was wonderful, because it typically closes at 6pm. One of Linda's volunteers was able to stay late.This evening, Mattie met up with a buddy, a little boy a couple of years younger than him. But this little boy is also an only child, and for some reason they relate to each other. In fact, Mattie sent Peter back to our room to bring this little fellow a cupcake. Mattie doesn't share cupcakes for the most part, but he wanted to tonight. Mattie asked Peter to find out if the little boy could have a cupcake. Mattie did not want to offer a cupcake to his friend if he wasn't allowed to eat a cupcake. I thought that was very sensitive. Any case, the boys enjoyed cupcakes together. In fact, Mattie has enjoyed several cupcakes today and snacks. He is eating up a storm, snack wise. I highly encourage this snacking.
Dr. Toretsky did tell me today that he is very pleased with Mattie's progress. For the most part he said many kids by this point going through intense chemotherapy would be on a feeding tube. So if the cupcake diet is working, I am sticking to it. In fact, my philosophy is he can eat whatever he wants as long as he eats. Mattie did some wonderful art projects tonight with Peter and his buddy. Check them out!
Left: notice that this lovely fall picture features a cockroach besides the tree!Right: when I asked Mattie what this picture was, perhaps fish swimming in a pond, he said "no, it was just a masterpiece."
We had a nice dinner tonight thanks to the Isaacson family! Thank you Joy for stopping by today. Sorry I missed you. I appreciate all your support, and for the chocolate cake!
As I write this posting, it is 10:45pm. Mattie completed a MTP-PE infusion, and at 10:15pm, he started his four hour methotrexate infusion. You may recall that Methotrexate is highlighter yellow in color. It is hard enough watching this hateful colored solution going into your child's body, but the fun part about all of this is collecting urine every four hours (then you get to see this lovely yellow stuff being excreted out). We will have to collect urine every four hours for the next several days until Mattie's body clears this toxic substance out of his body and has a .1 or lower level of methotrexate in his blood. Dr. Toretsky warned me today, that the next couple of weeks are going to be extremely taxing for Peter and I, because Mattie most likely will be spending a significant portion of time in the hospital. This is hard to swallow considering just how exhausted we are. I told Debbi when I saw her in the hallway, that I think osteosarcoma is by far one of the worst cancers I can imagine. It tries every fiber of your being.
I end tonight with an e-mail I received from my friend, Charlie. Charlie wrote, "I was so thrilled to read that Mattie's hearing is fine. We know how tough communication can become if you lose your hearing. So much of what we know, we absorb unconsciously through our senses and loss of any of them makes everything more difficult. I am so glad Mattie will not have to deal with that. It was nice to see Mattie enjoying himself with the wheelchair; he turned something many would see as a barrier into something positive. It is wonderful how through play children can cope with so many things like the need to take risks and to do unpleasant things. Once again, Mattie leads us all to understand that as long as you have your "connections" (you and Pete), it doesn't matter where you are physically, as long as you are loved and supported, you are safe. It is very clear that while Mattie cannot voice this he knows it instinctively, a tribute to you and Pete."
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