Thursday, July 16, 2009

Thursday, July 16, 2009

Quote of the day: "Love does not consist of gazing at each other, but in looking together in the same direction." ~ Antoine de Saint-Exupery

Mattie and I had another challenging day together. Mattie went to bed after 1am, was complaining of all sorts of pain, and by 1:30am, I decided to put a heat pack on his knee (thanks Junko for these supplies) to help with the pain. Mattie was up by 9am, and was ready to head downstairs to work on his Taj Mahal Lego structure. He is actually very motivated to try to put this together without much help. I admire his independence on this task.

We got ready to head to the hospital today, and arrived in clinic at 11:45am. We did not get home until 5:30pm. The length of time in clinic wasn't the problem, the problem was Mattie's emotional state. Mattie was originally thrown off when he arrived in clinic because Jenny and Jessie (his art therapists) were both in the PICU working with children. Mattie was looking for either of them, and when he saw volunteers only, he started to shut down. He did not want to even sit at the art table. In fact, he wanted to sit in the corner with me only. He had to get his vitals taken and then Dr. Synder wanted to examine him. It was at that point that all hell broke lose. He did not want to be touched today. He told Dr. Synder, his oncologist, that he "hates" her, that she only makes him sick, and that the only thing she could do for him is leave him alone. He was VERY angry. In addition to his anger, he was hitting his doctor, and then gave he a huge pinch on my arm. At one point he was so hysterical crying, that he demanded I tell Dr. Synder that she was a bad person. He kept saying over and over, "tell her, tell her, I won't stop crying or calm down, until you tell her." There was no way I was going to say that Dr. Synder was a bad person, and I wasn't going to cave into this irrational demand. Like when Mattie was a toddler, I stopped talking, sat by his side, and told him he needed to calm down before I could talk with him. Mind you, while this THIRTY minute debate was happening, Dr. Synder and her medical student were observing me. Well I have gotten so used to being critiqued and judged now, it is almost commonplace for me.

Mattie never calmed down, and instead Dr. Synder had to examine him through the crying. She held a firm ground with him, but I am beginning to think he is just scared and angry, and the firm stance isn't working. After she left the room, Mattie was in a bad place. Instead of him getting hooked up to his IV MTP-PE, I wheeled him outside the hospital to get some fresh air. While outside, he cried in my arms. It was about the most heart wrenching thing you can experience. Mattie wants this all to be over, he doesn't want to come back for more treatments, and he doesn't want to be touched. In particular he just wants to be normal. Who on earth can blame him?! I held him for a while without talking. Then I discussed with him the importance of getting examined and taking scans. I told him that even Brandon has to do this. I told him I don't like it either, but if this is going to help keep him healthy and the bone bugs away, then this is what we must do. I told him he is very special to me, and therefore because he is so special, if there is something we can do to keep him healthy, Peter and I will do it. With that, he said nothing, just listened. After ten minutes, he regrouped and we went back into clinic, but with the blanket over his head. He went back to the art table, but had the blanket over his head and did not want to interact with anyone.

Brandon came to visit Mattie today, but Mattie did not want to play with Brandon, Jenny, or Jessie. That was a direct indication to me that Mattie wasn't in a good place. Instead, Mattie wanted to go into one of the patient rooms in clinic and get into bed and watch TV. He and I watched Meerkat Manor on the animal planet while he received his MTP-PE. At 3pm, Anna (Mattie's PT) came by to visit and do therapy. Poor Anna always gets Mattie when he is at his absolute worst on Thursdays. However, Mattie was actually happy to see Anna. This was the first time during the day that I saw him somewhat animated or at least not disturbed to be in the presence of someone else. Despite Anna's best efforts, Mattie was physically exhausted from MTP and couldn't exercise at all. But Anna was able to get Mattie out of his room. While in clinic, Sarah Marshall came by to visit us. Sarah Marshall is one of our outstanding HEM/ONC nurses from C52. She is also a cancer survivor and a remarkable person and nurse. I will never forget when Mattie had his first bout of anxiety in the hospital, and Tricia (another amazing HEM/ONC nurse) and Sarah Marshall helped me advocate for Mattie's treatment with the doctors. I don't forget that act of kindness and support. Mattie did speak to Sarah Marshall and told her about his Lego set that he is working on. What was abundantly clear to me is Mattie is NOT comfortable in clinic. Even though being in the hospital isn't pleasant, we are both more comfortable on C52 than clinic. Why, because of the fabulous nurses in the PICU, who have become like family to us. They know everything about Mattie, his interests, what set him off, and they really care about his happiness. If I could only bring these fine ladies down to clinic with us, we would be all set. In any case, I need to find a way to make this work! I probably need to discuss this with Jenny, Jessie, and Linda.

As the afternoon continued, Mattie started to have the chills, developed a fever, and had an intense stomachache. He told me he thought his stomach was going to burst. When Dr. Synder came in, Mattie demanded IV kytril for his nausea. Dr. Synder did give Mattie Kytril, but I feel like with ALL his outbursts, I am unable to have a meaningful conversation with Dr. Synder about Mattie's care. I must resort to e-mails, which are clearly not the same as a face to face conversation. We were the last patient in clinic today, and by the time 5pm rolled around, I felt like I went ten rounds, and was losing the battle.

Tonight, Ellen (Charlotte's mom) and Christine (Campbell's mom) were taking me out for an early birthday celebration. They wanted to take me out to dinner and then to a play at the Kennedy Center for the performing arts. At first I wrote to them and told them to go without me. I was in no mood. But then they said they did not care what mood I was in, they wanted me to come. So when I got home, I quickly changed and met them for dinner. I can't thank them enough for a peaceful dinner, and a chance to chat. After dinner we went to see the musical called, Spring Awakenings. Ellen prepared me for the provocative subject matter in the play. It is about the awakening of teen sexuality. I have to tell you that this play was written in the 1800s, but was banned in England for over 100 years. I consider England to be very progressive, so this should give you some idea for the controversial material covered in this musical. This musical was about teens and their inadequate parents. It covered such issues as premarital sex, suicide, death, teenage pregnancy, abortion, homosexuality, incest, and physical abuse. But the musical did not only discuss these topics, in many cases it acted them out in a graphic manner. I question whether we really needed to see a sexual relationship illustrated in front of our eyes on stage, and I also wonder what has happened to live theatre? I believe live theatre will need parental ratings just like at the movies. I am saddened to see what we consider acceptable and okay in the name of artistic license. Putting all this aside, from a mental health standpoint, I was deeply troubled by the fact that issues were thrown out at us, and there were no solutions or avenues of help offered to these teens or those of us observing all these traumas. Almost as if these things happen and we might as well accept them. The underlying theme though was parenting. In the play, parents were only concerned about how their children's actions affected them, not really about the welfare of their children. Problem number one! Second issue, is that parents did not listen, talk, or provide moral direction and support for their children's development. As if these skills just arise on their own within our children. Well clearly they don't and the play did a great job illustrating what can happen when parents don't step up and serve their role.

Ellen and Christine naturally felt the play was depressing, and it was, but I guess I did not see it that way. I live depressing each day, so it is hard to depress me further. But I felt like this play was a missed opportunity to take these tragedies to the next step, or even discuss how such traumas could be prevented. This play almost needs an after play discussion group, because I have to wonder what emotions and reactions it stirred up for members of the audience. These controversial topics push our buttons, I can't imagine they wouldn't considering they hit us at our core. So you leave the play feeling raw, with no closure or outlet provided to make you feel protected or safe. With all that said, you can clearly see that attending this play took my mind off of Mattie for quite a bit of time, which after today, was a great thing! Thanks Ellen and Christine for whisking me away!

While I was out, Peter had full Mattie duty, which after a day like today wasn't easy. Peter and Mattie are working hard on the Taj Mahal Lego set, and I hear Mattie ate well (we want to thank the Griswold's for the wonderful homemade bread!) and even had a visit from our neighbor, JP. I realize Peter had a long day at work, but I always appreciate how he is willing to continue working with Mattie at home, so I have an opportunity for a break.

I would like to end tonight's blog with two messages I received today. The first message was from my friend, Charlie. Charlie wrote, "Well, Wednesday was not exactly the dream way most people would choose for their wedding anniversary. I think it is a wonder that you survived the day with your sanity intact and that you got Mattie to the hospital and his therapy appointment. I realize that the dose of medication that Mattie was on was a small one but he is so lightweight that I think the medication still had more of an impact than anyone realized. I am glad you did not give up and that you and Peter went out to dinner to celebrate your anniversary. I know that this year has put an amazing strain on your marriage and I commend you both for holding tight to each other through it all. As the quote says, you have definitely been looking in the same direction without wavering for this past year; we all know that Mattie would not have made it to this point otherwise. I wish you a Happy Anniversary and may every one that follows this one be a lighter, more joy filled one as I think you have had your more than your share of sorrows."


The second message is from my friend, Grace. Grace wrote, "I have to tell you, your blog has helped us in so many ways. You not only help us put things in perspective and inspire us with your positive attitude, indefatigable energy and dedication, you educate us. (And you thought you sidelined your teaching career for the moment! :-) Because we see how you so wisely interact and maneuver in the medical world, we can't help but pick up a few pointers that end up helping us enormously. I'm certain that Mark and I were more bold with the surgeon in telling him that things just weren't right with Christopher because we saw you lead the way. And earlier this year when Abby was at Children's Hospital for a week with a mystery illness, I used the information I learned from your blog to Abby's benefit. Because I was often in the hospital alone with Abby while Mark was home with the other kids, the only way I could get a meal was to leave Abby. But when I would ask the nurses if they could watch Abby for a few minutes so I could go to the cafeteria to quickly grab some food to bring back to her room, the nurses nonchalantly responded, "Just put the sides of the crib up and leave the door open and we'll listen for her." Perhaps their goal was to shift us to another floor which would handle the head trauma that would result if Abby climbed out of her crib while unattended or got wrapped up in all her IV tubes. Amazing! Thanks to you, I knew about the patient advocate service. You remain a true inspiration; throughout Abby's slew of tests (Cat scan, MRI, sonogram, spinal tap, EEG, chest x-ray, and many blood and other cultures) I just kept thinking to myself; this is nothing--if Vicki and Peter can go through all they are going through with such grace, I can endure a little uncertainty and a few tests. Once again, you're helping to put things in perspective for us all; those little bumps in the road of life just don't take on as much meaning or bring much turmoil anymore. So never fail to remember that although you may not be standing in front of a podium or grading papers, you remain a teacher to far more than a full auditorium. Your insights, which you so generously share with us each night, inspire, move and educate us more than quoting from any text book ever could. And the life lessons you provide will stay with us forever. Lastly, Happy Anniversary to you and Peter. I am forever impressed with how well you two work together; you exemplify "grace under pressure." So many couples would wilt under so much stress, but you not only remain strong, you are stronger."