Quotes of the day (Thanks Noelle and Charlie):
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." ~ Elisabeth Kubler-Ross
"Love is something eternal; the aspect may change, but not the essence." ~ Vincent Van Gogh
Last night, Mattie's nurse was Sarah Marshall. Sarah Marshall is a cancer survivor, and not only a competent nurse, but an amazing person. Mattie was edgy last night, but Sarah Marshall went with the flow. At one point, while Sarah Marshall was giving Mattie IV morphine, he decided to tell her that he really needs a bath. In fact, he was picking lint off of himself, and rubbing it onto Sarah Marshall. Instead of flinching or being grossed out by this prospect, Sarah Marshall told Mattie that perhaps they should put the lint in specimen bags. The dialogue was absolutely hysterical, and it was happening a little bit before 6am. I don't think I will ever forget this conversation, because you have to understand, Peter and I were attempting to sleep, and the lights were completely out in the room, and Sarah Marshall was administering medication in the dark, so that the rest of us could attempt to sleep. But Mattie was fully on despite being in pain!
I think though I am destined to just be up at 4 or 5am each morning. At this hour today, Sarah Marshall let us know that Mattie's second central line cultures came back positive for a Staph bacterial infection (she had to let us know, because she had to draw another set of cultures). Even at that hour, I questioned the results, especially since the first culture they took was and is still negative for such bacteria. So far, they have run three different sets of cultures on Mattie, and hopefully we will know what the third culture reveals tomorrow. Needless to say, they started Mattie on Vancomycin this morning. Peter and I are very hesitant to use Vancomycin with Mattie. First of all it is very powerful, it isn't called the antibiotic of last resort for no apparent reason. I was so upset with this bacterial result, mainly because I don't want Mattie on antibiotics if he doesn't need them. We even had Dr. Shad contact the microbiology lab at Georgetown to confirm the results. The director of Microbiology, who Peter and I have come to know, is on vacation this week. But Dr. Peters is so used to us, that when we call him, he will walk to the lab himself, pull out petri dishes and examine samples for us. I wish he were around today, to help clarify things for us.
Mattie had a very long Cyberknife procedure today, followed by a scheduled thoracentesis. Mattie was sedated for over 3 hours, and the safe limit for a child Mattie's age is around 2 and a half hour using Propofol. So clearly we were pushing Mattie's body. The Cyberknife procedure for Mattie has now been complete, and we should know within a week, if it accomplished anything for pain relief. While sitting in the catacombs of the hospital, I have observed the staff in radiation oncology greet their patients. Each patient is boldly greeted with the words, HOW ARE YOU? These three words have bothered me now for three days. I think the whole question is absurd! The person is a patient in the hospital, and getting radiation. How on earth do you think they are? I began to see that this was just a greeting that had no true meaning or purpose. I also noticed that all the patients responded by saying, "I am fine!" Clearly they are not fine, and I got to speak to one older patient in the reception area each day, and she was far from fine, yet always responded in this fashion. Needless to say, this question incensed me over the course of the week, because what it tells me is that the people greeting their patients do NOT have the foggiest clue how their patients are feeling or even what they are thinking. So after these blatant observations this week, I am trying to make a concerted effort to avoid the question HOW ARE YOU!
After Cyberknife, Mattie was transported while sedated to the ultrasound department. This is where the thoracentesis was going to be done. If I thought interventional radiology was bad, well ultrasound took the cake. The room they put Mattie in to do the procedure, did not even have a door. There was no waiting room for Peter and I to sit in, and we just stood in the hallway, until Linda found us and got us some chairs. The thoracentesis NEVER happened today. The doctor came out and immediately started talking to Peter and NOT to me. I let that go for a while, but what he didn't realize is that Peter is the more diplomaticl one in the family, because when it comes to Mattie, you will get barked at if I don't like what I am hearing, and I gave it to this doctor. He told us there wasn't enough fluid in the lungs to aspirate off. Mainly because the fluid was thick and viscous, and that the lung looked like a honeycomb inside. So even if they placed the needle inside, they would only get the fluid present in that segment of the honeycomb. He also explained to us that it is dangerous to remove such fluid, because in the process one could puncture the lung. After hearing all of this, I was in shock and very upset. Mainly because I did not realize that this was a possibility.....that the fluid in the lung can get so thick, and so forth. While we were talking to this ultrasound doctor, Mattie was being wheeled without us to the PICU. As we were trying to catch up, and were in a daze, we ran into Peter's brother and his family. They came to visit us today, but we were in no state to be talking to anyone at that point. Fortunately they understood and left. None the less, when I got up to the PICU, I was looking to talk with Dr. Shad. I couldn't find her, but Maria, our wonderful PICU administrative assistant paged her for me. While I was waiting to talk to Dr. Shad, I sat outside the PICU and began to cry. I am not sure why, but I do think hearing that the fluid couldn't be removed from Mattie's lungs today was too much for me.
Dr. Shad returned the page immediately, and I spoke with her. She felt that it was a good sign that Mattie did not have a major build up of fluid in his lungs after all the sedations and procedures he received this week. She provided a rational explanation for the thickness of the fluid, with the potential hope that it could clear up on its own. Dr. Eric, Mattie's intensivist, who worked with us all week during sedation, also elaborated on what Dr. Shad was telling us. Eric was great with Mattie, and before he sedated Mattie each day this week, he would tell Mattie, "No Surprises Mattie." To me that was a cute saying, because Eric always showed Mattie the drugs he was pushing through Mattie's central lines (so that he wouldn't get scared by the sensation of being knocked out) and also the motto was significant because Eric was saying in essence that he wanted no surprises throughout the entire procedure, meaning that Mattie's vitals would be stable.
After I got off the phone with Dr. Shad, I headed into Mattie's room. Norma, Mattie's sedation nurse, was in the room with Peter and Tricia (Mattie's outstanding HEM/ONC nurse). Norma is required to take vitals on Mattie every five minutes until he wakes up from sedation. Since he was knocked out for three hours, it took him a while to recover. While I was watching his vitals, seeing him gasping for air, and his lung moving in a strange rhythm, my emotions got the best of me, and I started to cry. Both Tricia and Norma couldn't do enough for me. They put me in a chair, covered me with a blanket, and Norma even rubbed my head. These nurses are remarkable people, and we feel fortunate that Norma came to work today on her day off to help Mattie. Consistency is key for Mattie and for us during this traumatic time.
Tricia is another phenomenal nurse, and she has seen me through some difficult moments of treatment. Despite Mattie's pending death being hard on all the HEM/ONC nurses, I can tell they stand ready to help us at a moments notice. I thank Tricia today for her support, and for all the HEM/ONC nurses for their concern this week.
We want to thank the Aridi family for a wonderfully generous lunch today. In fact we ate half of it while nervously waiting in the catacombs of the hospital! Thank you for all your support! We also want to thank Louise B. for dropping off a gift for Mattie before leaving for college tomorrow. Mattie hasn't opened it yet, but I know he will appreciate you thinking about him!
We are HOME tonight. The transition back was difficult. We got home around 7pm. I was getting very stressed out over this discharge since Mattie was running an 101 fever, his heart rate was high and his oxygen level in his blood was low. At one point, Tricia and I did not think that Mattie was going to be able to come home today. But Peter felt that we had to get Mattie out of the hospital. Mattie has become very edgy and anxious, and I concur with Peter that Mattie needs his familiar surroundings. None the less, I continue to be worried about managing Mattie's care, especially since we had to coordinate two deliveries tonight. One was medication and the other was the delivery of an oxygen tank. Mind you, the medications are new to us, and I don't know how to administer either, but an in-home nurse came over tonight and walked me through the process. However, I am saddened that Mattie has to be on TPN (his IV nutrition) for 16 hours a day. This is 16 hours in which he is hooked up to an IV! It will be a big adjustment for all of us!
When we got home we started unpacking, and yet balancing Mattie's needs. Mattie is SO anxious he won't let Peter or I out of his sight for long. Mattie's main goal was to ride Speedy Red today. So I was happy to accommodate that request. Peter snapped two pictures of us riding together! While riding, we bumped in JJ (our resident Jack Russell Terrier) and another dog named, Mac, who lives in the complex. Mattie enjoyed his time outside, and interacting with the dogs, which was wonderful!
We want to thank Kathy Brown for a wonderful homemade dinner! I really appreciated the fruit!!! Much thanks for your continued support. We also want to thank Margaret, Mattie's first preschool teacher for stopping by today and leaving some crafts with us. I have always wanted to have a clay imprint of Mattie's hands and feet, however, one thing led to another and with Mattie's sensory issues as a baby, this task was impossible to get done. But hopefully now we can capture a piece of Mattie with Margaret's clay kit.
Ann came over tonight to help us with Mattie and to lend support. Peter and I are both in our own fragile places, but somehow we are able to allow Ann in and help us during a time when neither of us knows what we need. As I told Ann, my intention is not to shut people out of my life, but at this point, it takes whatever strength I have to keep it together, and hopefully others can appreciate this. Needless to say, we are so honored that Ann continues on in her role to help us coordinate Mattie's care, and I don't want any of you to think for a minute that Ann's generosity and kindness to us goes unnoticed.
Tonight I learned how to inject all the necessary vitamins, amino acids, an other nutrients into a large TPN IV bag. So Mattie begins his 16 hour infusion of TPN at home, and it will run until 2pm tomorrow! Mattie continues to run a fever tonight, and will be receiving Vancomycin through his central line twice a day. At some point we have to take Mattie to the hospital on Saturday for a blood test, to measure the concentration of Vancomycin in his blood. It is my hope that Mattie has a good Saturday and Sunday, and that his mood stabilizes. However, tonight I decided to put him back on anxiety medication, and hopefully by tomorrow we will be seeing a bit of a change in his behavior. I do not take to the use of psychotropic medications easily in children, yet, I also know that there were times this year that not treating Mattie for his anxiety symptoms would have been inhumane.
I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I read Thursday's blog and all I could think is: when does it get easier? I do so hope that Mattie's tumors shrink and put less pressure on his lungs. I've been with patients with fluid in their lungs and it causes difficulty breathing and often panic feelings as well. I believe this is the reason behind much of Mattie's recent behavior. When breathing is such an issue, one has no energy to deal with anything else and your brain is yelling at you to do something to fix the situation. It is very disconcerting for someone who understands what is going on and incredibly frightening for someone who doesn't. If this hasn't been explained to Mattie, perhaps you can find a way to do so and also ask him to monitor how his breathing feels so that you can check on it when he says it is difficult. It might make him feel better to have some control here. I just want to echo your thanks to all who are continuing to support Mattie now and to say that this time is precious and not to be upset at your inability to spend much time with them. Mattie needs both you and Peter close at hand and you need him as well.I want to share this story with you. I was one of those who was not at the prayer meeting yesterday due to a previous promise to meet with a group of women. I decided to excuse myself from the group for a few minutes at seven o'clock to pray "with" the group at the chapel so I did. When I came back inside, the women asked me if I was alright and I explained what I was doing and why. The response was instant and unanimous. "We all want to pray as well." So we did. And then I was asked if they could each say a prayer every night at seven for Mattie and of course I said yes. So I bring you yet more people who are "non resident" members of the Mattie support group."
The second message if from a colleague of mine. Kim E. wrote, "I have been reluctant to contact you as I feared that it would somehow be a burden. But as I read your last posting on Mattie's blog stating that saying something is better than saying nothing, I knew I should send an email. I've been following Mattie's treatment and your experiences religiously; I had been really hopeful that Mattie would be within the small percentage of those who survive this terrible disease. When I read the news that the cancer spread, I felt such heartbreak for all of you. In fact, the night that I read the news I woke up weeping, weeping for the life of your beautiful child cut short, weeping for you and Peter and the loss of time together with Mattie--the loss of being a witness to his growth and life experiences. These tears were not the first, nor will they be the last that I shed for you. I don't know how to make sense of this tragedy. It IS the worst thing that can happen! On top of it all, to read about the insensitivities of others who ought to be there to help you is just infuriating. I'm sure that your profound love for Mattie enables you to advocate for him, to create a circle of support around you, and to deal with the intense challenges that you have faced in this process. Although I really only know Mattie from reading the blog, I can tell he is an incredibly courageous boy with the spirit of a hero. Please know that each day you are in my thoughts and prayers."
The third message is from a close family friend. Jane wrote, "For many nights, now I lay awake trying to find the right words to forward to you. No words, no thing can explain the lack of understanding of this terrible fight you have ahead. As you gave permission to speak to you from the heart. I can only believe that God surrounds himself with the very special, very gifted angels...children. I wish so deeply that our little Mattie was not one of them....but we all know that one day we will stand with them and I know at that time if I am lucky enough to be in that very special place that I can get to know Mattie. I speak to your Mom often during the week. My heart breaks for her tears and yours, but we both agree that Grandma (Vicki's maternal grandmother) will be waiting with open arms...who better...to look after him. We can not control the uncontrollable, and believe me at 74 years old, I would give my life for your child or any child who has suffered through this terrible disease. Just know that there are so many of my friends who pray for all of you. God Bless and know you are in Sandy's and my heart."
The fourth message is from one of my mentors at The George Washington University. Rich wrote, "There is no script for this. I think this is part of what makes this so so unbelievably, mind-numbingly hard for you (and all the others) who go through this. I can read in your writing your fear of the future, your longing for past (even the recent past when there was hope) and it is just heart wrenching to me. I feel so happy for you to have had these good years with Mattie, yet so angry that they will cut short by the ravaging disease. As Claire would so vociferously say: "It's NOT FAIR." Of course her screams, of unfairness defy logic and in fact are completely fair, even, and reasonable. This is clearly not the case in the hell you have been living the past year and the final truly unfair outcome.I am thinking of you guys often. Although it means little in grand scheme, your experience has really changed me, and how I interact with Claire. She does not know anything about this, but we are closer than ever, enjoying the small moments of bike riding together, playing games, you know the usual stuff. For that I am grateful.You're both so strong, even when you are feeling so weak, vulnerable, helpless. I read in wonder/awe at the support you have around you from hospital staff, friends, and family and watch in shock as our country "debates" health care reform... I think at some level Mattie must know that the end is near. Thus he wants you by him at all times. I know it hard (beyond all belief) but if there is any way to enjoy these last days with Mattie, I know you will find it."
The final message is from one of Linda's former Childlife interns! Laura wrote, "How is today going? I hope that you both and Mattie are having a good day, tell my worm-loving buddy I say "Hi!". I have a summer job as the Marina Aquatic Center and Adaptive Recreation intern at UCLA, and the campus hosts numerous conferences, and in June there was a conference for 2,000+ people from around the world who are all studying worms! At dinner some of them ate with some of the other dept of cultural and recreational affairs interns and me, and I had to hear about worms while eating. It made me immediately think of Mattie and I read your blog and was thrilled to hear Mattie was home from his surgery. Meg sent me the bad news last weekend and I have caught up on numerous blog posts. The blog has allowed Mattie’s life to captivate even more lives and encouraged so many, just as the strength of the two of you has. In such a difficult time, I am moved by the way you are concerned for the well-being of the hospital staff, and how Mattie continues to impact them daily as voiced by Jey and as demonstrated by Mattie’s interaction with Kathleen (reminds me of the Curious George clay tile she made that will forever be on the elephant), and of course with Linda and so many more people. It’s great that Mattie can determine when these interactions are made. There were times when I knew he wanted to be with Linda or Meg, and if they were available I tried to respect that because we all have different relationships with different people. And there were times I will always cherish with Mattie, like the last hour of his birthday party when you two and all the kids’ parents were in the hallway socializing and Linda and Meg had left and so it was just me figuring out what to do (with help from Brandon with Mattie’s direction and Charlotte’s help too) and the playroom was a mess and it looked great…when I didn’t have to put things away in the playroom at the end of the day I felt like it didn’t look used (unfortunately lots of patients were on isolation at times), when it was cluttered it didn’t look usable, but at Mattie’s bday party you could tell there were children all having a blast. Everyone was laughing and screaming and having a wonderful time, and then of course it turned into let’s use model magic to make worms to put on Laura. Mattie has always faced everything head on, I’ve heard him say he has no fears and then he asks others what ours are, and makes sure he exposes them to us. I think it’s his way of helping us get over them, while he takes pleasure from our reactions. It sounds a lot like what he’s doing now is trying to help everyone overcome the fear of living without him. He has never ceased to amaze me at the things he comes up with and the way he approaches tough concepts. When I looked at the blog a few days ago for the first time in a few months, Mattie looked so much older in the photos. I bet you guys don’t see it because you’re with him everyday, but he looks so much more mature. I was shocked how quickly he grew, but then saddened when I read how he won’t get to share his gift with even more people, but he is mature beyond his years and has impacted so many people and will continue too. I think about Mattie, about you two, about the staff at Georgetown and Meg, about all your loyal readers, and about all of Mattie’s friends, and how he will always be a part of everyone’s lives. Like Jey said at times people have to remember why they are in this line of work, because it is emotionally taxing, but it sounds like so many people at the hospital have impacted your lives during the past year and that is why they do it, to make a positive difference, and in the process your family has made a tremendous impact on so many else. That’s the hard part. People go into health care wanting to make a difference, not realizing that the lives of others are going to make huge imprints on them too. Everyone will remember Mattie and should feel good about the times they laughed together. Mattie wants everyone to face their fears. The word hope has new meaning because of The Brown Family. It sounds like Mattie is still the same lovable Mattie with many tender moments and many moments when he knows who he wants to be around and reading about these moments makes me think he’s still himself, which is wonderful. It sounds like a lot of the time he does want to just spend time with his parents and that’s a great gift to the three of you and a testament to how much like you said he trusts you, and also how much he loves you both and wants to keep you happy, it’s the times when you’re with him that you push through and find that smile and enjoy that time, it’s when he’s not there that you are able to listen to the thoughts in your heads, and you need that time too but Mattie is still here directing it all, your time to yourself and your time with him. It sounds like you do want that time just the three of you, but you are afraid to offend others by not wanting everyone around at this time, but I think everyone should understand and it sounds like you are afraid that you are not giving others the opportunity to see Mattie or say goodbye, and no matter when everyone is going to want more time with him, but Mattie is able to help you it seems in directing the flow of people, so you three can as much time as possible as a family together which sounds like it is what you all want and need. P.S. To sum up my letter, you are not biased. You have an amazing son."
I end tonight with a Hawaiian goodnight blessing. Thanks Lana! Mo'e mo'e a, mo'e mali'e, i ka poli 'e, which translates, Dream, sleep gently in my heart.
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