Tuesday, August 4, 2009

Tuesday, August 4, 2009

Quote of the day: "Things can fall apart, or threaten to, for many reasons, and then there's got to be a leap of faith. Ultimately, when you're at the edge, you have to go forward or backward; if you go forward, you have to jump together." ~ Yo-Yo Ma

As I suspected last night was a hard night. Not that any of our nights are easy, but Mattie's stomach pain was out of control. Tylenol did not work, Kytril (his anti-emetic) did nothing, and forget Prevacid! As the night wore on, I saw that the only relief Mattie was going to get was to break down and give him Morphine. I was so thrilled to have all these pain medications behind us, but somehow, this wasn't meant to be. After about 30 minutes post-morphine consumption, Mattie started to slow down. But he was highly anxious, so I decided to lie next to him and rub his head and arm, until he finally shut off for the night. However, after a four hour ordeal of crying and screaming in pain, I was so worn out, yet so strung out I couldn't sleep! Prior to Mattie's illness, I was the best sleeper, now, I am a walking case study. I can't fall asleep, and even if I am asleep, my body is naturally programmed to wake up every two hours. I thank the PICU very much for this new and unhealthy sleep pattern. I remember Mattie's psychiatrist telling me there is a high correlation between children with cancer, and their parents who develop PTSD. I don't have PTSD, and neither does Peter, but I can see definite aspects of it developing in myself. Being on heightened alert, with constant memories of the tortures of surgery and chemotherapy on your child, are indeed hard things for a parent to live through and survive. After Mattie went to bed, I sat in his room, in the dark, and I couldn't fall asleep mostly because that is when my mind goes into over drive. Fortunately for me, Ann and Alison (our manager of the Mattie fund, and our communications coordinator) e-mailed me about things, which kept me engaged, and frankly I couldn't make it this year without technology. It is through text messages and e-mails, that I keep my sanity. Every e-mail I receive and supportive comment means a great deal to me during these lonely and difficult times.

I know some of you are e-mailing me with concerns about my health. I appreciate your e-mails and I want you to know that Alison and Ann are working with me to find more steady childcare support. However, finding the right person and match for Mattie is of utmost importance. Though I embrace the help, a part of me can't help but feel as if I am failing Mattie by not being able to continue my 24/7 routine. I assure you Alison is helping me face this reality and reframe the situation, which I appreciate. I am thankful that Alison is taking this on for me now, because I neither have the energy or where with all to deal with interviews of potential people. Thank you Alison!

I went through the day today, very concerned about Mattie's stomach. Mattie is virtually eating nothing. Not just today but for the past few days. Between not eating, and his intense pains, I couldn't stand the stress. I left Mattie's doctor several messages today and we eventually connected in the afternoon. Mattie had his therapy appointment with Dr. Biel, his psychiatrist. Mattie looks forward to these meetings, but I could tell Mattie was annoyed at me when I told Dr. Biel about some of my social concerns regarding Mattie. Dr. Biel always meets with Mattie and I five minutes before his session starts. Today, Mattie couldn't wait for me to leave the room, and he found the concerns I was expressing highly inflammatory. Dr. Biel will be meeting with Peter and I alone next week to discuss Mattie's progress and our next steps.

After his therapy session, Mattie started to complain of pain, was getting anxious about the pain becoming out of control, and insisted on going home. Mind you Mattie had a physical therapy appointment this afternoon but he refused to go. I could have forced him, but I could see he was in no physical or mental state of mind for a productive session. I was so overwrought by all of this, I called Peter. Not that I wanted him to say anything, I just landed ranting on the phone. Basically I was more determined than ever that get to the bottom of this stomach issue, because I can't believe the not eating in Mattie's case is psychological. I feel he has a true physical issue going on.

Later this afternoon, Dr. Synder, Mattie's oncologist, called me. We spoke for over 30 minutes. She shares my concerns, and is taking an aggressive stance about this. Tomorrow I will call to schedule an abdominal ultrasound for Mattie. If this is inconclusive, we will arrange for an abdominal CT scan. In addition, Dr. Synder is having us consult with a GI physician, who will determine if a potential endoscopy is necessary. Dr. Synder doesn't feel as if Mattie has an ulcer, based on where the pain seems to be radiating from. Mattie's pain is on the right side, near his rib cage. Dr. Synder said that if he had an ulcer, he would feel it more on his left side, where the stomach is. She also feels that we need to rule out issues with Mattie's liver and gall bladder. Though all of this is down right scary, Dr. Synder told me that if Mattie doesn't start eating soon, he will be placed on a feeding tube. She asked me if it made sense to tell Mattie this. I told her I believe being honest with Mattie, and I stick to that conviction, however, I told her that I don't think this potential threat will inspire Mattie to eat. I told her that I as a parent, can't force Mattie to eat when I believe something is physically wrong with him. If all the testing proves to me that nothing is wrong, then I will deal with the psychological issues around not eating. But for now, I am not taking this stance, because in my heart of hearts I feel something is medically wrong!

While I was having this conversation with Dr. Synder, Marisa arrived to help me with Mattie. This was helpful, because typically if it were just Mattie and I alone, I couldn't have such a lengthy phone call. Dr. Synder did say that she is sorry I am dealing with this now, because for most cancer patients who are three months post-chemo, things should be on the upswing. I haven't experienced that high yet and frankly wonder if I ever will. I did appreciate Dr. Synder acknowledging the emotional side of this, which is one of the reasons I find her so unique to her profession.

Needless to say, today's stress over Mattie's stomach weighs heavy on our minds. At one point today, Ann called me, since she had text messaged me throughout the day over this issue, and asked how she could help me. I am not sure what you say about someone who is balancing so much already, but would drop things to offer help. The frustrating thing about Mattie's condition is HOW DO YOU HELP? This is something Ann and I discuss often. We are both proactive people, but when dealing with cancer, there are many times where there is nothing you can do, and the only thing that helps is to stop and talk it through. Peter and I thank God each day that Ann took on the role as our Team Mattie coordinator, and through all this coordination arose a beautiful friendship based on mutual respect and support.

While Marisa was with Mattie this afternoon, I went to have a pedicure. It was lovely to sit for a while. I brought a book to read, but I couldn't even focus on the words. So instead I just sat there and watched people. One of my favorite past times! I then went to visit Ann's dad for a bit tonight in his rehabilitation facility. I think he was surprised to see me since I normally only visit on a weekend, but we had a lovely conversation together, and he told me that it was just impossible not to like me. That comment touched my heart!

We want to thank the Cavanaugh's for a wonderful home cooked dinner tonight. We loved the fish and the salad, and loved your blueberry cobbler! Thank you for your continued support.

I would like to end tonight's posting with two messages. The first one is from my friend, Charlie. Charlie wrote, "Well, Monday was definitely why they coined the phrase, "two steps forward, one step back." Clearly not one of Mattie's best days. I am sure it is very difficult for you to constantly be the "ambassador" of Mattie's life when you want so much for him to be polite and social with others. I am sure it hurts when he shuts down and you feel others may be judging you for his behavior. Those of us who know you, know what you've gone through this past year; we know how far Mattie has come and how you've given your life and your heart so that he could get to this point. Those who don't know but are willing to judge, well, they should walk a mile in the shoes of a parent like yourself and then see how they feel. I bet that they would be far more compassionate and forgiving after that. I pray you are able to get to the bottom of Mattie's stomach and eating problems. It is difficult for a child (or anyone) to gain strength without eating and I would hate to see Mattie put on tube feedings or any other sort of medical intervention for feeding."

The second message is from my mom. My mom wrote, "Your advocacy for Mattie has created a host of admirers who read the blog and marvel at the skill with which you hone in on the medical issues that remain troubling because they are vaguely understood and border on the brink of the experimental in medical knowledge. Nonetheless, these issues require solutions for Mattie to lead a normal life. Your quest for answers and solutions is a hallmark of the passion and devotion you have for Mattie. Anyone who knows you knows that you are focused and persistent and that if Mattie is a strong willed boy, he has certainly inherited that trait from his mother. His basic nature will propel him forward but at a price. He must understand WHY he is required to do something before you can engage him wholeheartedly to participate and embrace what he is told to do. if anyone can reach him it is you, as you have reached so many others, giving them a deeper understanding of everyday matters that daily affect their lives. Your teaching skills give all of us many teachable moments so never doubt the power of your shared perspective on life. However, the cost of remaining vigilant and ever watchful in caring for Mattie is high but very necessary given that Mattie's recovery is at the crossroads and although the signs are encouraging because of his feistiness and drive to live, this is a dangerous battle with twists and turns that remain unpredictable and hard to accept. Remember, even though he sometimes resists cooperating in the process of rehabilitation that Mattie's stubbornness may ultimately be what drives his recovery! He has a better track record for dealing with the reality of his situation than most adults facing problems of their own. With respect to his care and treatment over the course of the last year, you must always remember your value and stay resilient, strong and proactive. That is what you do best! Remember too, that you are the 5 star General in this battle for without you in the leadership role, the enemy has the upper hand! With you in command, the enemy can and will be defeated!"