Tuesday, July 7, 2009

Tuesday, July 7, 2009



Quote of the day (Thanks Daddy!): "Life must be lived forward, but it can only be understood backwards." ~ Soren Kierkegaard



My Dad sent me the above quote weeks ago, and when I first read it, I liked it a lot. But I did not post it on the blog until I was in the right mood, and it fit the message I wanted to convey. Well that moment has come! I think what I like about Kierkegaard's quote is it illustrates to us how to conceptualize and understand a child whose body and mind have been ravaged by cancer. Certainly any of us on a given day live our life moving forward. After all, we are a very future oriented society. But for most people, and especially children with cancer, it is impossible to move forward, without looking back at that person's history (in this case the type of cancer, the treatment, the extent and duration of treatment, where the treatment took place, the family system, etc...). By looking back, it explains many of the issues, feelings, and behaviors present before our eyes today. Or in other words the aftermath or the shell of the patient we see today. Denying the past only denies a richer future. I had a revelation today, or maybe I knew it all along, but faced it today, that in order to free Mattie to move forward, I must help him understand what happened during these last 12 months. It is only by coming to peace with the past, that the true Mattie will be able to develop and unfold. What sparked this revelation today? Plain and simple, it was something Mattie said to me while awaiting his physical therapy appointment. Keep reading, I will explain this in a minute.





Before I tell you more about my revelation, I wanted to share the finished LEGO carousel project with you. I need to take a picture of it during the day time hours, but this will give you a feeling for its intricacies and amazing moving parts! This was such a labor of love, and there is no way I am breaking it apart for a while.



Mattie went to bed at 12:15am on Monday. Though that sounds late, that is actually early for Mattie. I am hoping as he gets used to being home, that this bedtime hour will continue to become earlier. We are certainly working toward that. However, Mattie was exhausted this morning and couldn't wake up. At noon, I woke him up, and got him ready for the day. He had physical therapy today at the hospital. Our appointment time is 3pm, Mondays through Thursdays. This is the time when the PT gym isn't as crowded and Mattie can have more free rein over the equipment there. I did speak to Anna today about a different wheelchair for Mattie, because I can't keep lifting this chair in and out of the car day in and day out. It is way too heavy, and in my more weakened condition, I could land up hurting myself. Actually my biggest fear is something happening to myself or Peter, because this would be bad news for Mattie.



While Mattie and I were waiting in the PT waiting area, Mattie turned to me all of a sudden and said, "I don't like myself!" That is an enormous statement, that could mean anything. Instead of placating him or trying to insert my own thoughts into his thinking, I stopped myself, and asked him to tell me more about this statement. At which point he became closed off. However, a few minutes later he went on to say that he has never liked himself. I did not think that was true, so I said did he feel this way always or after he got sick? He admitted to feeling this way after he developed cancer. Then specifically stated that what he doesn't like about himself is that he "had surgery." He doesn't like that he has scars, that he can't walk, and that he can't do anything for himself. This was a lot to hear in the middle of a waiting area, when PT was about to start. All during his PT session, I tried to process how he was feeling. I certainly don't blame him one bit. He looks different, he feels different, and he is different physically and psychologically than most other seven year olds. I can't deny that, but he is still my seven year old, and despite acknowledging all of these differences, I told him he is very special, that going through this will make him stronger, and that none of his other friends can say they survived cancer. Nor can they say they have bionic parts. I told him that when these parts start fully working, his friends better watch out. With that, he started to laugh. However, this subject matter came up in the car ride home as well. It is firmly in his mind, and despite trying to help him manage these feelings, it is heartbreaking to hear your seven year old say he doesn't like himself. I realized for the first time, or maybe accepted it for the first time, that osteosarcoma will be something I am fighting all my life. Not just physically, but I will be fighting its long term psychological effects. That alone was a daunting proposition. I can see as we get further out of treatment, the mental and emotional anguish that Mattie survived through is slowly being revealed. Certainly I could brush that under the rug, and try to deny it and move forward. But whenever you deny something, it only is going to fester its ugly head somewhere else. So we might as well attack the problem head on. I also realized that my desire to keep Mattie protected from others in the cancer community, meaning not attending camps designed for children with cancer, is a bad idea. He needs to see others like himself, living and thriving. Mattie certainly has wonderful friends, but he can't keep up with them right now, and a part of me always feels on these playdates that in a way it is unfair for his friends. I land up feeling like we are some sort of charity case, which I am sure is not how others feel, but I fully admit my own insecurities. I certainly embrace typically developing children interacting with children who have special needs, but I also must understand the importance of making Mattie whole and accepting himself. Until he does this, he will have a hard time integrating back into mainstream society. So I guess his comments to me were a revelation today, and one that will have to force me out of my comfort zone in order to explore other options for him that will help him develop socially. I think he needs to process his feelings (well of course on a child like level, most likely through play and activities), but the only true way to do this is with other kids who have experienced similar issues.



I am happy to report that Mattie had a very positive session with Anna and Cathy. Cathy will be working with Mattie on days that Anna is unable to. Cathy also has a lot of energy and is very patient with Mattie. Anna and our social worker, Denise, devised a behavioral reward chart for Mattie this week. He can put stickers next to each category he successfully achieves or attempts to achieve in physical therapy. If he accumulates enough stickers, then he will win a prize at the end of the week. The prize he has his mind set on is a rubber ball that sits in the Lombardi Clinic. So I am happy for the moment that this incentive system is working for him. Mattie started the session off on a platform swing, and used "Steve," his right leg to push his body. When you compare his right leg to his left leg, you can see how it has atrophied. However, Mattie really made great efforts today. In addition, he brought in some waxed sticks called bendaroos that he got from Ann, and he used them in therapy. He actually stuck these sticks to the walls and had to use his arms to reach up and place them in front of him. Anna carried Mattie to the wall. But the therapists were amazed, because Mattie put his back to the wall, and literally used it as a brace to start walking. Anna commended Mattie, because she said that is an excellent way to start moving around. That alone was amazing, but the next thing caught us off guard. Check out the photo of Mattie placing the bendaroos on the wall. Do you notice how far up his arms are reaching. Both arms, not just the left arm! I was shocked, because he keeps his arms close to his sides, but in all reality this shows me when pushed how much he can really do! This to me was a very positive step!

Mattie even went on a scooter today and had to push himself up a ramp using only "Steve." He was quite successful, but by the time this was over, he seemed worn out. Pictured in the photo are Anna, Mattie, and Cathy!




When we got back from his session, Marisa came over to help me with Mattie for a couple of hours. Marisa is the daughter of a colleague and friend of mine from the George Washington University. When Marisa arrived Mattie felt nauseous and wasn't in the best of moods. However, Marisa held her own, and by the time I got back, Mattie was playing and seemed to be out of his funk. I am happy that Marisa helped to work this through with him, but leaving Mattie is always a hard thing to do because I never know when he will need me to come home. I certainly wouldn't want anyone caring for Mattie if he was melting down or in need of my attention, this can be hard to manage.

While Marisa was with Mattie, I landed up running around doing chores. It is funny that while grocery shopping I bumped into Dr. Bob and Abigail. They were surprised to see me in their neck of the woods, but the irony is I have gotten so used to shopping near Mattie's schools, that to me this drive is commonplace. But I am sure it catches others off guard that someone from DC would commute to Virginia to shop. One of my main goals today was to go pick up some things at the grocery store to cook for Mattie. Dr. Synder, Mattie's oncologist, is concerned about his nutrition. In fact she has me keeping a food diary for Mattie starting today. So I decided to go shopping and buy fresh vegetables, sweet potatoes, and chicken, and try to cook some of the things Mattie used to like before he got sick. His stomach, I have no doubt has shrunk since chemo, and therefore, he must be served very small portions otherwise, he will be completely turned off to food. So far, I am happy to report that he ate a bowl of fresh cooked spinach that I made for him. But I really want Mattie to stimulate his appetite naturally rather than using such things as Marinol. Marinol is a unique prescription medicine that relieves multiple symptoms. The United States Food and Drug Administration (FDA) approved Marinol to treat nausea and vomiting associated with cancer chemotherapy in patients who have failed to respond adequately to conventional treatments. The FDA also approved Marinol to treat appetite loss. Health care professionals may prescribe Marinol to help stimulate a patient’s appetite so he or she will want to eat again. But you should know that Marinol is a Marijuana derivative.


In addition, we learned that a preliminary report has come back from Oncotech in California. It has revealed that Mattie's tumor was 80% positive for Vascular endothelial growth factor (VEGF). An abundance of scientific evidence now points to the central role of both angiogenesis (the growth of blood vessels from pre-existing vasculature) in tumor growth and the role of vascular endothelial growth factor (VEGF) in angiogenesis. So if Mattie's cancer come back again, there are two forms of experimental chemotherapies that target VEGF receptors, such as Gemcitabine and Docetaxel. In addition, the analysis showed that Mattie does not have any Kit receptors on his tumor cells, which means that Gleevec (a targeted cancer drug) would not be an effective treatment for Mattie. What Peter and I have come to accept, we don't like it of course, is that there is nothing we can give Mattie NOW other than MTP-PE to try to prevent an osteosarcoma recurrence. So at this point, the best our advanced healthcare system in this Country can offer us is the wait and see approach. Amazing, we can come up with effective treatment regimens for HIV/AIDS and yet we are still in the dark ages with cancer. Why is this?

We want to thank Nicole Lucarelli for a wonderful and very generous dinner tonight from Papa Razzi. In fact, Peter and I ate outside while Marisa was watching Mattie. It was nice to eat for a bit and be able to talk with Peter about various things today.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Mattie is at that difficult age where he has the ability to decide whether or not to cooperate but he isn't old enough to be able to see past the immediate situation to the distant outcome. I think that just like the chemotherapy, you are going to have good days and bad ones with this. I believe the key will be to find some sort of immediate (within an hour or two) reward that Mattie is willing to work for. Mattie is also intensely competitive so perhaps a chart of his progress where you can mark some daily measurement might be useful? I think that the prospect of getting a "zero" or going backwards on this might be enough to motivate him on some in-between days.I do think that the public has no understanding of how having a life threatening or chronic disease affects your life but your blog is certainly a good chronicle of how that works. Loss of privacy, personal space, little to no sleep, lack of routine, emotional and physical isolation, and tolerance for previously unacceptable behaviors from others, the list could go on for a page. Not only is there no protocol in place for what to do when there is no current evidence of cancer, there is no roadmap or support system in place for the family of a cancer patient either. In both cases, it is a set up as you go system. Not exactly what you want if the desired result is the long term healthy survival of the patient and the family. I hope your blog results in improved plans for both post cancer treatment and family support by the institution."