Saturday, August 15, 2009
Quotes of the day (Thanks Tad and Charlie): "Children are the bridge to heaven." ~ Persian Proverb
"Silences make the real conversations between friends. Not the saying but the never needing to say is what counts." ~ Margaret Lee Runbeck
Today was NOT the day I was hoping for. It is funny, because even as I am typing this statement it sounds absurd. Absurd because we have lived through 365 days that we weren't hoping for, and we have many, many more to come. None the less, our goal this weekend was to make Mattie happy at home. That clearly did not happen today!
Mattie had a restless night, was moaning a lot, but was manageable. However, as the morning hit, he became more and more nauseous. No amount of anti-emetics helped Mattie this morning, and believe me I pushed IV Kytril and Zofran around the clock. Mattie was continuously vomiting. In addition, he was experiencing intense pain, but was unable to swallow any of his oral medications. The only items I was able to administer were IV medications such as his nutrient TPN, which ran over 16 hours, his vancomycin (antibiotic for a staph infection), and his anti-emetics. But as the morning continued, there was nothing I could do for his pain. I felt helpless, and SO frustrated. I tried rationalizing with Mattie the importance of taking his oral medication, but that was a losing battle, and the more I insisted, the more frightened and anxious he became. So I quickly realized that tactic wasn't effective!
While I was trying to handle Mattie, Peter was running around trying to fill an instant release morphine prescription. He went to our usual pharmacy, who said they had this medication. So Peter waited for 30 minutes while it was being filled, only to find out in the end that the pharmacy did not stock the medication. So much for customer service, and you have to wonder why the pharmacy did not even think about calling other pharmacies to find out other options for us. Any case, Peter came home, told me the story, and said he was going to try calling around other pharmacies to locate the drug. At which point I said absolutely NOT. I told him to call Dr. Shad and get her residents to do this! We had our hands full with Mattie, and I wasn't going to tolerate such busy work today. Peter did call Dr. Shad and within 30 minutes, the hospital tracked down a pharmacy in Capitol Hill who had this medication. So Peter went out a second time. However, each time Peter left, Mattie became more and more unglued. In fact, I was text messaging Peter throughout his trip because I wasn't sure how much longer I could manage Mattie's pain without this medicine he was getting filled.
Mattie did periodically nap at home this morning, because he was burning up with an 101 fever and of course was writhing in pain. However, he wanted me right by his side, so somehow I never made it out of my pajamas or even ate for most of the day. When Peter got home with the morphine, I could see quickly that things were totally out of control. So I had Peter sit with Mattie and I immediately called Dr. Shad. I told her about the fever, the pain, the uncontrollable nausea, and vomiting. She asked me if I felt he had to come in, and I said absolutely! I had to break the news to Mattie, but I think he was in such pain, he was open to anything to take it away. None the less, he wouldn't go in the car without receiving more anti-emetics. Though he wasn't due for a dosage, I caved in and gave it to him. Peter then lifted him up and into his wheelchair and they were off to the hospital without me. I stayed behind to clean up the mess that was created from the morning, and to take a shower and potentially pack for a hospital stay.
Before heading to the hospital later in the afternoon, I stopped at a local store in our complex and picked up lunch for Peter and I. While I was in the store, music was playing in the background, and guess what was playing? ABBA's Dancing Queen. I literally must have looked like a statue. Because hearing the song flooded my memory with all the physical therapy sessions Mattie had while he was learning to walk again. I associate the song with Mattie's fight against Osteosarcoma, and at the time, we were hopeful that maybe he was going to be the one in a million miracle.
At around 4:30pm, I arrived at the hospital, and I could see Mattie was MUCH calmer. His vitals were great (NO need for oxygen today!!!) and the IV morphine eased his pain tremendously. So I could see that my mission was to get a Patient-controlled analgesia (PCA) pump at home ASAP so we could go home on Sunday. A PCA allows a patient to self-administer analgesics (pain medications) intravenously by using a computerized pump, which introduces specific doses into an intravenous line. I expressed our wishes to Dr. Shad, and the residents contacted our in-home pharmacy service today to try to coordinate a delivery.
After speaking with Dr. Shad, I decided to go home, and pick up things that we would need to spend the night in the hospital. Sure I could have done that on my original trip into the hospital, but I guess a part of me did not want to admit that we really needed to stay, even though my gut instinct told me otherwise. While at home, I spoke with Dr. Synder, Mattie's oncologist, and she is working on presenting me other options to relieve Mattie's pain. They all involve different forms of chemotherapy, so Peter and I will have to seriously think about this. Now we are of a different mindset, caring for Mattie now is about comfort and compassion, and not about fighting the "bone bugs."
Mattie has had a very peaceful night in the hospital. I talked to Dr. Shad about starting Mattie on an IV anti-anxiety medication, and he started Valium today. Peter and I have noticed a big difference already, and in fact, it helped slow him down, so that at midnight he is actually sleeping. I am not sure he will need this at home, but he definitely needed it today, since he was in a very fragile and volatile place. I can imagine as pain builds up, and you don't experience any relief, anxiety is therefore a natural byproduct!
We want to thank the Lee's for a wonderful home cooked dinner tonight. Julia we loved your chicken and rice, and I can't thank you enough for the home brewed Earl Grey iced tea. I am a big Earl Grey tea fan! I also meant to thank whom ever sent us the most beautiful gerber daisies in the mail yesterday. They are a peach color and they look so happy. The card was lovely, but it wasn't signed, so I have no idea who sent them to us! But we thank you, they are so appreciated!
As we head into Sunday, our goal is to figure out what medications Mattie will need at home, and get him discharged tomorrow morning. Wish us luck with that! We did receive the PCA tonight and the IV morphine. Our in home company literally hand delivered it to me in the PICU. I am just so impressed how forces were mobilized today to make this happen.
I end tonight with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Of course the path is never an easy one; Friday had to be an impossible day. An extra long procedure in radiation oncology with some very thoughtless people, followed by the whole situation in ultrasound with no door, no seating, no concern. And then to find out that the scheduled procedure could not be done after all and Mattie was transported back to the PICU without you. What an incredibly distressing day. Even though you finally got to go home at the end of all this, there was so much more to cope with. The possible infection in Mattie's line and the required antibiotics, the TPN via IV for 16 hours a day and Mattie's added anxiety. It speaks volumes that he was able to smile and enjoy some time in Speedy Red with all that going on. I am so glad you went with your instincts and got Mattie the car; you can see from his smile that it is making all the difference at this point for him. I know you are not a fan of medication but whatever makes Mattie's life better and more tolerable for him now is a good thing to consider. It is important for him and for you that he be calm enough to enjoy the time he has while he can since we don't know how the progression of the cancer will go. The best thing to do is to proceed as you are, enjoying and treasuring every moment you can and letting go of as much small stuff as you are able. I hope Saturday's trip to the hospital for the blood test is uneventful, the news about the infection is good and that you are back home quickly with Mattie."
The second message is from a colleague of Peter's. Sharon wrote, "I’m so happy to read on your blog that you and Mattie are home from the hospital, and able to be in your own surroundings. And especially happy that Mattie is able to enjoy some time with Speedy Red again. It must be so empowering for him to be able to race around under his own steam. And what little boy wouldn’t love such a car! The three of you have never been far from my thoughts over the past year, and I find my mind turning to thoughts of you and your struggle frequently since this most recent prognosis. I can see from your writings, Vicki, that you are working hard to process, accept, explore, plan, and I’m a little amazed that you even have the mental strength to process anything given everything you have to deal with on a daily basis. You’re amazing. It’s impossible to explain or even contemplate why Mattie has had to go through this horrible disease, but it’s clear why you and Pete are being asked to go through it with him – because he couldn’t have asked for better and more loving parents to help him through everything. Pete, my heart goes out to you. I think there have been a lot of tears recently in the world that Mattie has touched, and there will of course be many more. I don’t know how you’re holding up, and while my first wish would of course be health for Mattie, my second would be for a lessening of the pain for you."
The final message is from a fellow SSSAS parent and new friend. Laurie wrote, "I didn't want to let too much more time go by before letting you know that you are in my thoughts and prayers every day. I attended the wonderful prayer service last night and one of the exercises Ashley had us do (just as a means of facilitating our conversation) was to write down what we thought was Mattie's legacy -- in our view. I wrote down some thoughts and then decided it made sense to share these with you and Peter so you could know what your story has meant to me, a fellow St. Stephen's parent, but really just as a fellow parent... Mattie's effect on my life is immeasurable. I think of him (and you!) every day and I want you to know I thank you for sharing him with all of us. Whether he exhibits good or bad (!) behavior (and every single one of us can relate to your intermittent challenges with him) he's been a joy to get to know. He makes me laugh (for instance his love of taunting you with bugs -- and Peter's part in this as well!) and I often fine myself marveling at his insights and point of view. I'll always remember what pleasure he gets from just "playing" (and I totally understand how wearying this can be for you -- even under the best of circumstances!). Whenever I think of Legos, I'll think of Mattie Brown. Mattie is a gift and he could not have had better parents. Thank you again for sharing your gift with us. We are all better for it."
August 15, 2009
Friday, August 14, 2009
Friday, August 14, 2009
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.
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.
August 13, 2009
Thursday, August 13, 2009
Thursday, August 13, 2009 -- We would like to thank Ashley Goff Glennon for hosting a prayer service for Mattie supporters tonight. We hope it was a special, peaceful, and memorable event for you. We thank all of those in attendance and all of our readers who said a prayer or paused tonight to think of Mattie from afar.
Quotes of the day (thanks Katie M. and Charlie): "There are stars whose light reaches the earth only after they themselves have disintegrated. And there are people whose brilliance continues to light the world though they are no longer among the living. These lights are particularly bright when the night is dark. They light the way for humankind." ~ an Israeli soldier, Chana Senesh
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~ Mother Theresa
I can always tell how I am physically doing, by how I am eating. Today food just doesn't seem appetizing or even worth eating. In fact, seeing it makes me feel sick to my stomach. There are also times throughout the day, I land up holding my chest, because I can feel it fluttering. Similar to how I felt when Mattie was first diagnosed in July 2008. It just feels like panic taking over my body, but then of course it subsides, and I can move on. Last night was a winner! I woke up this morning and I told Peter, that Thursday has to be our last night staying here, because if I don't go home by Friday, I won't make it here. I am physically exhausted, and don't get me started about my mental state.
This evening, Dr. Bob came by to visit and lend support. This was clearly not a medical visit, and we appreciate his concern and friendship. But Mattie did not want anyone in his room, and pointed Bob to the door. Bob handled Mattie's level of non-responsiveness very well. Soon after Bob left, Tanja and her daughter Katharina came by to drop off dinner. Mattie started screaming, so I knew that he wanted everyone out of the room. I spoke with Tanja and Katharina for a few minutes in the hallway, and then jumped back inside. Thank you for a lovely homecooked dinner and for all the wonderful gifts you brought Mattie back from your trip to Germany. Mattie loved the light up dinosaur and the slimy octopus. In fact, Mattie had me get Katie (one of our wonderful HEM/ONC nurses) because he wanted to scare her with the octopus. Katie hammed it up and Mattie loved it.
Left: Mattie building a ferry boat Lego today!
Right: Mattie holding up his light up dinosaur egg that Tanja and Katharina gave him.
This evening, I went out into the hallway to talk with Dr. Shad. She spoke to me about Mattie's palliative care options. She is encouraging us to do palliative care with Georgetown rather than with hospice. She assures me that they will work with Peter and I to keep Mattie home for as long as physically possible. But when it gets too much for us to handle, he will be able to be cared for in the PICU. She spoke to me about such directives as Do Not Resuscitate. In fact, I am going through the motions, but I can't believe I am forced to make these major life changing decisions now in my life, and for my seven year old son! There is just so much wrong with this picture. I want Mattie home, but I fear I won't be able to manage him there, especially as his lungs fill with fluid. In fact, I am happy to go home tomorrow, and yet at the same time I am frightened. We are headed home to learn how to administer oxygen, use a pulse oximeter (a non-invasive way to assess oxygen in the blood), and administer TPN and fat nutrients. All of this is overwhelming alone, but watching his breathing will be the most stressful for me. In fact, we are going home which should be a happy thing, but it really isn't. For the first time, I am headed home from the hospital and feel disillusioned, knowing that I am headed home to capture memories with Mattie, before Osteosarcoma claims his life. I can't tell you just how devastating this is.
The second message is from Mattie's preschool director and our friend. Kim wrote, "I spent a bit of time this morning preparing the Parish Hall for the prayer service tonight. It was quite early – and I was all alone, and I used the time to simply immerse myself in thoughts about you and Peter and Mattie. I simply don’t know how you are going through this – but at the same time, I DO KNOW that you are going through it with unimaginable insight and courage. I suspect it doesn’t feel that way to you – but your strength shines through to the rest of us. Mattie is so special. That becomes clearer and clearer. I think you are so right to cherish and hold tight to the private moments your family now has. But even has you may close in a bit upon yourself, I’m sure you can feel the cocoon of love that surrounds you --- and will help you emerge from all this as the different “being” that you undoubtedly will be. I hope that the prayer service tonight will be a comfort for many people. Please keep reminding yourself that you are not alone."
The third message is from our friend Katie. Katie is Zachary's mom, and as many of you know, Mattie and Zachary were inseparable in preschool. Zachary has been right by his side this year! Katie wrote, "We've all been following the blog and news of Mattie's condition up here in Maine. We're thinking about you constantly and our hearts are aching. The kids understand -- on very different levels -- what's happening. There have been many "why's" asked. In typical 7-year-old fashion, Zachary commented, "Why don't the doctors just make a potion to cure Mattie? What are they, stupid?" The innocence of this comment actually made me smile. If only life were that simple. As you know, I was (and still am) ready to fly down with Zachary at a moment's notice -- if it would help Mattie and you all. I know that Zachary is worried that he won't get to see his friend again."
The fourth message is from a colleague and friend. Melissa S. wrote, "Dear Vicki, where do I begin? My words simply can not convey the grief I feel as you prepare to lose your most precious Mattie. I weep and can not explain the power of my tears--somehow I wish that those around you could cry some of your tears for you so that you might be spared just a sliver of your grief. I know in my soul, that this loss is just an earthly one and that Mattie will go on in spirit, as will your love for one another--but that seems like such minuscule comfort when viewed in light of the depth of the suffering that Mattie and you and Peter have endured and continue to endure. All I know is that YOU ARE COURAGE. I am completely humbled and shell-shocked by your journey and by your willingness to share it so honestly and profoundly. My life is deeper and richer because you have shared yours with me. Please forgive me for sharing this for it might seem a bit odd, but when I struggle to convey my thoughts/feelings, poetry sometimes helps me."
She is frailty, vulnerability, broken-ness.
He is yearning, a light in the darkness, hoping amidst fear.
He is frail, vulnerable, broken
She is reaching, fighting for light, borrowing faith.
He was knit in her womb, a builder of many, mysteriously wise,
She is his fiercest advocate, his tender touchstone, his heart's home.
They are family, mother and son, woven together, inextricably tied.
They are the clearest living picture of courage and love.
May you wrap each other in the awesomeness of your love for one another and somehow find a peace in the beauty that this love holds. You both are incredible gifts to one another and to this world. My deepest prayers are with you.
The final message is from Meg, a former childlife intern of Linda's. Most of you remember Meg as Mattie's racing partner during physical therapy in the PICU. Mattie and Meg were good buddies, and instantly bonded. Meg wrote, "I have been thinking for the past week what I wanted to say to you both. But words cannot express my feelings. When I read on the blog the terrible news my heart broke for all of you. I cannot believe that it is true. Having a world without Mattie just doesn't seem right or possible. This just isn't fair. Above my computer on, my desk, is the statue that you gave me with the little boy holding a kite that says "Hope". I have been glancing and staring at it over the past week, thinking we hoped for nothing. I know we all hoped for a better diagnosis and out come but now I hope for something different. I hope that Mattie understands how much his parents love him and that they are willing to go to the ends of the earth for him. I hope that you and Peter understand how much Mattie loves you. I hope Mattie is able to spend his time enjoying his life and Speedy Red. I hope Mattie isn't in pain. I hope all you realize that myself, GUH staff, your blog readers have all been changed by you and Mattie. Lastly, I hope you and Peter know that Mattie will live in all of our hearts forever. Everyone who ever met Mattie, or read about him in the blog will have Mattie in their hearts. The ripple effects have been started. Mattie is leaving a legacy behind. People will learn from others what a special boy Mattie is and what a big heart he has! He will continue to change lives forever. I know you already know this but Mattie has a way of making the good come out in everyone and a way of getting under your skin. One can't help but fall in love with Mattie. Mattie made a difference in my life. His spirit and courage is truly a gift that we can all learn from. I am so grateful to have had the opportunity to get to know Mattie. My "Super-Mattie" book is sitting on my shelf and I have been looking at it a lot this week. Mattie really is a super hero. He has the strength to fight the villainous cancer mercilessly, along with the help of his side-kicks, Super Vicki and Super Peter. He is loved by all who are rescued by him. And most importantly he has a pure heart and fights for everything good in life. I can't imagine what is like to lose a child. But trying to imagine losing Mattie, and not knowing him closely, is something I can't begin to fathom. I know none of this can be any sort of a consolation for either of you and I wish I could just take all the hurt, pain sickness away. This just isn't fair. I am angry about this. The three of you are supposed to live happily ever after and I personally am infuriated that cancer is taking that away from you. My heart is with you while all of you are going through this difficult time. I am praying for all of you and I love you're family dearly."
Quotes of the day (thanks Katie M. and Charlie): "There are stars whose light reaches the earth only after they themselves have disintegrated. And there are people whose brilliance continues to light the world though they are no longer among the living. These lights are particularly bright when the night is dark. They light the way for humankind." ~ an Israeli soldier, Chana Senesh
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~ Mother Theresa
I can always tell how I am physically doing, by how I am eating. Today food just doesn't seem appetizing or even worth eating. In fact, seeing it makes me feel sick to my stomach. There are also times throughout the day, I land up holding my chest, because I can feel it fluttering. Similar to how I felt when Mattie was first diagnosed in July 2008. It just feels like panic taking over my body, but then of course it subsides, and I can move on. Last night was a winner! I woke up this morning and I told Peter, that Thursday has to be our last night staying here, because if I don't go home by Friday, I won't make it here. I am physically exhausted, and don't get me started about my mental state.
Mattie went to bed after 1am. He had a challenging night. Filled with fevers, agitation, and the need for constant attention. I can't leave his side sometimes, and I attribute this to fear and anxiety, all of which is SO understandable. However, by 4am, chaos ensued. As you know Mattie receives total parenteral nutrition (TPN) at night. This bag of nutrients provides Mattie with 1200 calories per day, and has to be run over 16 hours. Not an easy task to accomplish as we head home, but I can tell compared to some of the other things I will be managing, this will be the easiest. I just feel bad that Mattie needs to be tied to an IV for most of his days. Any case, at 4am, the fat (and literally there is a bag of FAT hanging on the IV pole that gets infused in) clogged up Mattie's IV tubing. Betsy, Mattie's nurse, and I were working on this together for two hours, using flashlights so we wouldn't wake up Mattie. Betsy changed the IV tubing, the filters on the tubing, and so forth. By the time we finished we had two IV poles in the room. One running the liquid nutrients and the other IV pole running the fats. You have to understand our room is the size of a postage stamp, so having two massive IV poles in the room takes up real estate. Betsy handled this very well, and was calm and collected, because if I were her, I would have tossed all the IV bags out the window!
Mattie was assigned Tricia today as his nurse. Many of you may recall previous postings about Tricia. Tricia is an outstanding nurse, and a great advocate for Mattie. I will never forget the time that Mattie got mad at me during his first cycle of chemotherapy. He was having a tantrum and said just horrible things to me. Tricia talked to Mattie, and then landed up tucking both Mattie and I into bed together. We had many tender moments like this with Tricia over this year. Tricia also brings me hot tea every morning, and this morning it was greatly appreciated! She also ran around the hospital getting Peter coffee. I was happy to see that Tricia was assigned to work with Mattie today, because I was getting paranoid. I noticed we weren't assigned any of our usual HEM/ONC nurses all week (except for Erin one night, the rest of the time we have been here, we have had traveling nurses). Part of me worried that this meant our wonderful HEM/ONC nurses who we love just weren't sure how to proceed with us. Having Tricia today helped with my uneasiness.
We woke Mattie up at 10:00am. He woke up in pain, and is still on IV morphine. Almost every two hours. Norma, Mattie's sedation nurse this week, came to get Mattie at 10:30am to bring him down for Cyberknife. What do you say about a person who is coming in on her days off to help with Mattie?! Amazing! Mattie had a very long procedure today. Maybe about 2 and a half hours. During the first half an hour, Peter and I went outside to get some fresh air, while Linda stayed in the Radiation department with Mattie. It was wonderful to get fresh air, and Peter and I sat on campus, in a spot we used to sit in when Mattie was first diagnosed with cancer in July 2008. It was actually hard to be in this spot, because it made us reflect how quickly this fight was taken from us. After 30 minutes, I headed back down to the catacombs to sit in the radiation waiting room. Peter went to find Dr. Shad, the director of the pediatric Lombardi Clinic to ask her some questions about getting discharged on Friday. Peter actually sat in on Dr. Shad's rounds, and I am SO happy he did, because a lot got accomplished. Meanwhile, as I was sitting in the radiation department, Linda came out to find me and gave me an update about Mattie. I was telling Linda how hard this is for us, and I also told her of my guilt for even taking a break. In essence do I deserve a break, when Mattie can't take one, and he is fighting for his life? Linda answered this question with a resounding yes, and of course we talked about things that I may want to do with Mattie before he gets quite sick. Linda has earned her title, Angel of Caring, for good reason!
While I was with Mattie today, Mattie had some visitors. We want to thank the Bower family for the wonderful lunch and desserts they provided us. We so appreciate your support. In addition, Liza B. (one of Linda's former volunteers, and a Mattie helper) came by and dropped us off some lovely pastries and a card. Sorry we missed all of you, but this week, we have our hands full with Cyberknife and the recovery from daily sedation.
Peter came to find me after he spoke to Dr. Shad. I learned that Mattie will receive his last Cyberknife treatment on Friday. In addition, his chest x-ray revealed that the right side of his lungs is almost completely filled with fluid. So though we did a thoracentesis (draining of the lung fluid) on Monday, Mattie will have to have another one tomorrow right after his Cyberknife treatment, while he is still under sedation. Dr. Synder, Mattie's oncologist, came by to visit us today, and she explained to me why this fluid is building up in his lungs. Basically the lung tissue is rubbing on the tumors with each breath Mattie takes. The rubbing further makes a sore in the lung tissue until fluid starts to leak from the lung tissue and build up. The scary part about all of this, is that for Osteosarcoma children, what kills them in lung disease. If we can't control the fluid, he will be unable to breathe. Ideally, we are hoping the Cyberknife treatments help shrink some of the tumors on the liver, which are putting additional pressure on the lungs, and further creating the lung tissue to rub together, and exude fluid. But there is no telling that Cyberknife will work or even be effective for Mattie.
After Mattie's procedure, the sedation team brought Mattie back to his room. It literally is a process. Mattie comes up on a stretcher, with a doctor, nurses, and a crash cart. The crash cart is needed because we are transporting Mattie from one floor to another in the hospital, using an elevator, when he is completely sedated. So anything could happen along the way! That alone is frightening, and this process has happened four times already this week. While Mattie was recovering in his room, I was in the hallway talking to Laura, one of our HEM/ONC nurses. Out of the corner of my eye, I could spot two of my students who came to visit. I couldn't talk to them long, but I appreciated their support, and their understanding that I had to jump back and be with Mattie. But Julie R. and Nicole M. came bearing gifts. They brought Mattie a magic trick, and they brought me a delicious homemade chocolate cake. In fact, I shared it with the nurses too, and they were in love with this cake. Thank you Julie and Nicole. You made a lot of people happy today!
However, this was a difficult day. Mattie is highly anxious, wants no visitors, wants Peter and I by his side constantly, and did not even want to play with Linda. In addition, he has been complaining of eye pain for the past three days, but today's pain was excruciating. Peter and I think that his eyes are getting dried out during the sedation process, since they become slightly open throughout the procedure, and remember Cyberknife is at least two hours every day. So Mattie has been very uncomfortable all day. Tomorrow we are going to ask that a lubricant be put into his eyes so they don't dry out. Right now, I have an ice pack sitting on his eye! With each cry and whine, Peter and I feel like we are further losing control of the situation.
This evening, Dr. Bob came by to visit and lend support. This was clearly not a medical visit, and we appreciate his concern and friendship. But Mattie did not want anyone in his room, and pointed Bob to the door. Bob handled Mattie's level of non-responsiveness very well. Soon after Bob left, Tanja and her daughter Katharina came by to drop off dinner. Mattie started screaming, so I knew that he wanted everyone out of the room. I spoke with Tanja and Katharina for a few minutes in the hallway, and then jumped back inside. Thank you for a lovely homecooked dinner and for all the wonderful gifts you brought Mattie back from your trip to Germany. Mattie loved the light up dinosaur and the slimy octopus. In fact, Mattie had me get Katie (one of our wonderful HEM/ONC nurses) because he wanted to scare her with the octopus. Katie hammed it up and Mattie loved it.
Left: Mattie building a ferry boat Lego today!
Right: Mattie holding up his light up dinosaur egg that Tanja and Katharina gave him.
This evening, I went out into the hallway to talk with Dr. Shad. She spoke to me about Mattie's palliative care options. She is encouraging us to do palliative care with Georgetown rather than with hospice. She assures me that they will work with Peter and I to keep Mattie home for as long as physically possible. But when it gets too much for us to handle, he will be able to be cared for in the PICU. She spoke to me about such directives as Do Not Resuscitate. In fact, I am going through the motions, but I can't believe I am forced to make these major life changing decisions now in my life, and for my seven year old son! There is just so much wrong with this picture. I want Mattie home, but I fear I won't be able to manage him there, especially as his lungs fill with fluid. In fact, I am happy to go home tomorrow, and yet at the same time I am frightened. We are headed home to learn how to administer oxygen, use a pulse oximeter (a non-invasive way to assess oxygen in the blood), and administer TPN and fat nutrients. All of this is overwhelming alone, but watching his breathing will be the most stressful for me. In fact, we are going home which should be a happy thing, but it really isn't. For the first time, I am headed home from the hospital and feel disillusioned, knowing that I am headed home to capture memories with Mattie, before Osteosarcoma claims his life. I can't tell you just how devastating this is.
I would like to end tonight's posting with six messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad that Wednesday's treatment went well for Mattie and that he is breathing better. Leave it to Mattie to find a way to make the treatment into a game and working hard to win. Mattie has the spirit of an Olympic competitor, always looking for the next challenge and showing us all how to take things in stride. What you are feeling with Mattie, wanting to preserve this time for yourself is perfectly normal. You are building the store of memories that will take you into the future and that is the most important thing right now. Mattie knows in his heart what is going on and I believe that is one of the reasons he also doesn't want company but only his parents and familiar things and a few select others around him. I think you will have to follow Mattie's lead on this and do what works for him and for you and not feel guilty about protecting your time together. I do want to comment on Dr Snyder's remarks to you about you and Peter being a vital part of Mattie's treatment program this year. This is absolutely true and she is not just being kind or trying to make you feel better. I know so many people who as much as they love their child, spouse or parent who cannot make the commitment to do the kind of medical care and loving treatment that you have this year. The person therefore ends up spending more time in the hospital or in a nursing facility because the person cannot face IVs or giving medications or clearing lines. So, believe me when I say, what you have done is well above and beyond. I hope Mattie's last two treatments this week go well, his temperature stays down and you are able to be released to go home this weekend. Know that a large number of people will be praying for you and Mattie tonight whether we are in the prayer group in person or elsewhere."
The second message is from Mattie's preschool director and our friend. Kim wrote, "I spent a bit of time this morning preparing the Parish Hall for the prayer service tonight. It was quite early – and I was all alone, and I used the time to simply immerse myself in thoughts about you and Peter and Mattie. I simply don’t know how you are going through this – but at the same time, I DO KNOW that you are going through it with unimaginable insight and courage. I suspect it doesn’t feel that way to you – but your strength shines through to the rest of us. Mattie is so special. That becomes clearer and clearer. I think you are so right to cherish and hold tight to the private moments your family now has. But even has you may close in a bit upon yourself, I’m sure you can feel the cocoon of love that surrounds you --- and will help you emerge from all this as the different “being” that you undoubtedly will be. I hope that the prayer service tonight will be a comfort for many people. Please keep reminding yourself that you are not alone."
The third message is from our friend Katie. Katie is Zachary's mom, and as many of you know, Mattie and Zachary were inseparable in preschool. Zachary has been right by his side this year! Katie wrote, "We've all been following the blog and news of Mattie's condition up here in Maine. We're thinking about you constantly and our hearts are aching. The kids understand -- on very different levels -- what's happening. There have been many "why's" asked. In typical 7-year-old fashion, Zachary commented, "Why don't the doctors just make a potion to cure Mattie? What are they, stupid?" The innocence of this comment actually made me smile. If only life were that simple. As you know, I was (and still am) ready to fly down with Zachary at a moment's notice -- if it would help Mattie and you all. I know that Zachary is worried that he won't get to see his friend again."
The fourth message is from a colleague and friend. Melissa S. wrote, "Dear Vicki, where do I begin? My words simply can not convey the grief I feel as you prepare to lose your most precious Mattie. I weep and can not explain the power of my tears--somehow I wish that those around you could cry some of your tears for you so that you might be spared just a sliver of your grief. I know in my soul, that this loss is just an earthly one and that Mattie will go on in spirit, as will your love for one another--but that seems like such minuscule comfort when viewed in light of the depth of the suffering that Mattie and you and Peter have endured and continue to endure. All I know is that YOU ARE COURAGE. I am completely humbled and shell-shocked by your journey and by your willingness to share it so honestly and profoundly. My life is deeper and richer because you have shared yours with me. Please forgive me for sharing this for it might seem a bit odd, but when I struggle to convey my thoughts/feelings, poetry sometimes helps me."
She is frailty, vulnerability, broken-ness.
He is yearning, a light in the darkness, hoping amidst fear.
He is frail, vulnerable, broken
She is reaching, fighting for light, borrowing faith.
He was knit in her womb, a builder of many, mysteriously wise,
She is his fiercest advocate, his tender touchstone, his heart's home.
They are family, mother and son, woven together, inextricably tied.
They are the clearest living picture of courage and love.
May you wrap each other in the awesomeness of your love for one another and somehow find a peace in the beauty that this love holds. You both are incredible gifts to one another and to this world. My deepest prayers are with you.
The fifth message is from Lesley, a good friend of my sister-in-law's, Lisa. Lesley wrote, "I am sure hearing from a stranger in your darkest moment is not comforting and I do not pretend to know how to do the "right" thing. I can let you know that I am up with you at night worried. I have identified with your family since our boys were born and seemed so alike. This year I shared with you many times that Mattie's behavior( the good, the bad) was typical of many seven year old children I knew....my hope was to comfort you. The play therapy session was truly something that let me know that he is no longer seven or typical. His desire to guide you is something that is remarkable and shows the type of unconditional love you have given him, he trying to givie right back to Peter and you. Mattie is insightful and poetic with his words and actions. I do not know where you get the strength but I do see that you have a community of people ready to be there for you on the days when you can not as strong. My thoughts and prayers are with your entire family."
The final message is from Meg, a former childlife intern of Linda's. Most of you remember Meg as Mattie's racing partner during physical therapy in the PICU. Mattie and Meg were good buddies, and instantly bonded. Meg wrote, "I have been thinking for the past week what I wanted to say to you both. But words cannot express my feelings. When I read on the blog the terrible news my heart broke for all of you. I cannot believe that it is true. Having a world without Mattie just doesn't seem right or possible. This just isn't fair. Above my computer on, my desk, is the statue that you gave me with the little boy holding a kite that says "Hope". I have been glancing and staring at it over the past week, thinking we hoped for nothing. I know we all hoped for a better diagnosis and out come but now I hope for something different. I hope that Mattie understands how much his parents love him and that they are willing to go to the ends of the earth for him. I hope that you and Peter understand how much Mattie loves you. I hope Mattie is able to spend his time enjoying his life and Speedy Red. I hope Mattie isn't in pain. I hope all you realize that myself, GUH staff, your blog readers have all been changed by you and Mattie. Lastly, I hope you and Peter know that Mattie will live in all of our hearts forever. Everyone who ever met Mattie, or read about him in the blog will have Mattie in their hearts. The ripple effects have been started. Mattie is leaving a legacy behind. People will learn from others what a special boy Mattie is and what a big heart he has! He will continue to change lives forever. I know you already know this but Mattie has a way of making the good come out in everyone and a way of getting under your skin. One can't help but fall in love with Mattie. Mattie made a difference in my life. His spirit and courage is truly a gift that we can all learn from. I am so grateful to have had the opportunity to get to know Mattie. My "Super-Mattie" book is sitting on my shelf and I have been looking at it a lot this week. Mattie really is a super hero. He has the strength to fight the villainous cancer mercilessly, along with the help of his side-kicks, Super Vicki and Super Peter. He is loved by all who are rescued by him. And most importantly he has a pure heart and fights for everything good in life. I can't imagine what is like to lose a child. But trying to imagine losing Mattie, and not knowing him closely, is something I can't begin to fathom. I know none of this can be any sort of a consolation for either of you and I wish I could just take all the hurt, pain sickness away. This just isn't fair. I am angry about this. The three of you are supposed to live happily ever after and I personally am infuriated that cancer is taking that away from you. My heart is with you while all of you are going through this difficult time. I am praying for all of you and I love you're family dearly."
August 12, 2009
Wednesday, August 12, 2009
Wednesday, August 12, 2009 -- I want to acknowledge that a prayer service is being planned for Mattie supporters tomorrow night (August 13). We will be there with you in spirit, and we so appreciate you standing behind us through this very difficult journey.
Left: Mattie knew Peter was up to the challenge, but then he handed me the spirometer and wanted me to show him what I was capable of! So the whole family received respiratory therapy today!
Right: Jenny, one of Mattie's art therapists, brought us up some wonderful cards and a gift from Bridget. Bridget is a cancer survivor and one of the lovely people we have gotten to know in the Lombardi Clinic. We want to thank Cathy, Bridget's mom for encouraging children to send Mattie cards and art work this week. I have taped up all the art work we received today in Mattie's room. Thank you all for thinking of us. We want to thank Bridget's family for the great balloons and bag filled with all sorts of wonderful gifts and crafts! You may see a picture of two guys in this photo. The photo is from Brandon and Jared (the Lego Brickmasters who played with Mattie at the Lego store), and they wanted Mattie to know they were thinking of him.
Left: Bridget drew a beautiful picture for Mattie with bugs and other creatures. It is a beautiful creation, and it makes Mattie's room very happy.
Left: We then got creative, and we decided to test Sweeper's skills on knocking things over. So Peter, Mattie, and Linda designed a Fenway Park replica, and a Yankees Stadium replica. The test was to see who Sweeper could knock down. In other words, which stadium or team in a way is stronger, the Red Sox or the Yankees. This competition took on a life of its own!
Left: I hate to break it to the Red Sox fans reading the blog, but Sweeper knocked over Fenway park quickly!
After his time in the playroom, Mattie came back to this room, and took his second chest x-ray for the day. However, as the night sets in, he is now in need of oxygen and is very edgy and agitated. It is so hard to be around Mattie when he is like this, especially when you are living in a two by four. I have yet to leave the PICU in days, and I feel so overwhelmingly tired. As I know so does Peter.
The final message is from my mom. My mom wrote, "When did Mattie sense that he had reached the point of no return? The ghost house play described by Dr. Biel sends a chilling message to the adult world that Mattie knows he has to move on from his childhood life with his parents, family and friends to a place beyond where healthy children are not called and therefore must not be allowed to enter. In the deep recesses of his subconscious mind, he recognizes that his spirit must seek another home as his earthly body signals that it can no longer provide him the sustenance he needs to support him in human form. He is very clever and rationalizes that he must take the next step in the process to prepare for the inevitable. That is: Where will I go next and what will it be like? Not very unlike the rest of us who try to figure out what lies beyond our human experience and what happens to us after death. As a big fan of Scooby Do, he has incorporated the ghost story themes as the basic element of what must lie beyond the beyond and has thrust himself into it and found a role that suits his childhood understanding of detachment and separation from his human existence. He calculates with adult comprehension and intellectual honesty that his parents will not be coming with him. So he follows through by having a conversation with his mother to let her know that he's fine with her having another baby, reasoning that she will no longer have him to care for and that the other baby will take his place so she won't have time to miss him too much!! As if he could be replaced that easily! I have admired his heroic courage from the outset when this nasty, despicable disease struck and forever ended his carefree childhood, forcing upon him endless treatments and surgeries that tested his endurance and stamina while he countered by doing everything in his power to try to reclaim his body and save his life. He proved in his short life how to be a brave soldier and showed us how to fight to the bitter end against a formidable foe. We can all learn much by his example. Now, he has achieved a profundity beyond my wildest comprehension displaying through role play the wisdom of a wise old man although only 7. He is telling the world by his actions that he accepts that his spirit can no longer fight against the deadly enemy of cancer while expressing his fears through role play to communicate his concern for what he is going through to those who will listen. All from a 7 year old who is suffering in pain who has the clarity of vision to rationalize about the inevitable consequences of his illness and still worry about how his parents will go on without him!! I always knew Mattie was an intellectually gifted child but his prescient understanding of life and love is so touching in one so vulnerable facing the unknown. Mattie, you have given us many teachable moments in your short life and have by example provided us with an the ultimate instruction manual on how to face the end of our own lives with courage and strength."
Quote of the day: "One of the deep secrets of life is that all that is really worth doing is what we do for others." ~ Lewis Carol
Mattie finally went to bed at around 12:30am, after we watched a Scooby Doo movie. Now when I see ghosts in these movies, I can't think of them the same way. I have been thinking a lot about the Mattie play scenario that Dr. Biel shared with me yesterday. I have come to one conclusion, and I realize I may be biased, but I think this assessment is quite accurate. I have an amazing son! A son who has trusted his dad and I with his treatment which involved cutting up his body in several places, surviving months and months of toxic chemotherapy treatments, and dealing with profound disabilities, where he is still unable to walk. This is a lot to even write about, much less to actually accept. Yet that is what Mattie did. He accepted it as part of the healing process, yet now, as Peter and I are trying to come to terms with saying good-bye to Mattie, which is actually much harder than the cancer treatment itself, we are finding that our son is able to guide us and help us along this journey. If that is not an incredible human being, I am not sure what is. But saying good-bye to Mattie is very unknown to us. Unlike his chemotherapy schedule, we do not know what his decline is going to look like or when it will happen. Though I realize it is important to allow others in during this time so they can have their time to say good-bye to Mattie in their own way, I find though that I am turning inward, and becoming very protective of his time. The special time we share in my mind should mostly be between the three of us, especially as he begins to decline.
Throughout the night, Mattie was up. We have had one restless night of sleep after another. In fact, Mattie's night nurse, Erin (as a reminder, Erin was the first nurse at the hospital to teach me how to change Mattie's central line dressing, and on another note, Erin is using the Mattie sunshine stamp on her wedding invitations!) last night came up to me at 4am, as I was lying in the hospital chair, and asked me how I was, and if I could sleep! It was a very touching scene, and that is just it, Mattie's HEM/ONC nurses not only care for Mattie, they care about us. Peter and I both sense that the news about Mattie is hard on them as well. In fact, sometimes Peter and I feel awkward now as we walk the hallways of the PICU. But I told Peter today, that this is all very natural. People don't want to hurt us by saying anything wrong, but I told him, we need to act as we have always acted, and once I think we do, then others will know how to interact with us. Mattie's terminal status has hit all of us hard. For that matter, it has hit my readers very hard too. I freely acknowledge this! I have received many e-mails over the course of the week, and many of you tell me you don't know what to say. Or if you say something, you are afraid how it will sound or be interpreted. I appreciate your level of sensitivity. I can't speak for Peter, but for me, saying anything is better than saying nothing. There are no miracle words to be said, but knowing we have your support, is very empowering.
I want to report that we had a MUCH smoother morning. Our patient advocate and our nurses have prevented us from receiving morning disruptions. The effort was greatly appreciated! In addition, Linda got on the shower light situation, and in true Linda fashion, had the problem fixed in an hour! Linda can and does accomplish wonders.
Mattie had his second Cyberknife treatment this morning at 8:30am. He was sedated for 90 minutes. This treatment was focused on the large tumor behind his rib cage. He will return for two more Cyberknife treatments, on Thursday and Friday. These treatments will target the liver. So far today, Mattie hasn't been running a fever, but the night is young. He remains on antibiotics, and the good news is he hasn't needed to be on oxygen around the clock today. Another first for the week! Of course as of tonight, he is back on oxygen! After the Cyberknife procedure, Mattie came up to his room, and slept for two hours. He was wiped out, most likely from sedation and the radiation. While sedated he had a chest x-ray. The chest x-ray was inconclusive, most likely because he was under sedation for a while. So Mattie had a second x-ray later in the day, after he was able to sit up for a while. The x-ray, looked much better, so they have ruled out pneumonia (which was a possibility earlier in the day, since he had a fever, and lots of fluid was showing up on the chest x-ray).
Norma, one of the amazing sedation nurses, helped us again with Mattie's Cyberknife treatment today. In fact, though tomorrow is her day off, she is coming in again, to help Mattie get sedated for Cyberknife. Norma told me that Debbi, our sedation nurse angel, was even thinking of cancelling her vacation this week because she wanted to support us. I am glad that Debbi did not cancel her trip, because she deserves a break. Working with sick children is very taxing and I have no doubt breaks are not only needed but necessary. Norma's daughter, Gabby, even made me chocolate chip cookies today. So we felt very well taken care of! Norma stopped by at the end of the day to talk with me too and we had a lovely conversation about the challenges of dealing with cancer from a parent standpoint.
We want to thank Charlie for a wonderful lunch today. Thank you for the brownies! They made our afternoon. Charlie told me that when she called Takeout Taxi today to order our lunch, the person on the phone asked where the lunch was going to be delivered. When Charlie told them to Georgetown Hospital's PICU, the person asked her immediately how was Mattie?! I told Charlie this made me laugh today! But it also reminded me the great acts of kindness and generosity all of you have bestowed on us so that we never had to worry about meals.
When Mattie woke up this afternoon, Linda greeted Mattie with a cart load of toys. He was very excited, and actually wanted to get up and go to the playroom. Before he went to the playroom, we had him do his respiratory exercises. Mattie did not want to do them at first, but we made it into a competition, and Mattie instantly wanted to play! I think the fact that Mattie has seen such respiratory therapy equipment as a spirometer and an acappella during his sternotomy helped a great deal. These items help him open his airways and mobilize secretions.
Left: Peter breathing in through the spirometer and Mattie blowing out through the acappella.
Right: Mattie blowing like a champ!
Left: Mattie knew Peter was up to the challenge, but then he handed me the spirometer and wanted me to show him what I was capable of! So the whole family received respiratory therapy today!
Right: Jenny, one of Mattie's art therapists, brought us up some wonderful cards and a gift from Bridget. Bridget is a cancer survivor and one of the lovely people we have gotten to know in the Lombardi Clinic. We want to thank Cathy, Bridget's mom for encouraging children to send Mattie cards and art work this week. I have taped up all the art work we received today in Mattie's room. Thank you all for thinking of us. We want to thank Bridget's family for the great balloons and bag filled with all sorts of wonderful gifts and crafts! You may see a picture of two guys in this photo. The photo is from Brandon and Jared (the Lego Brickmasters who played with Mattie at the Lego store), and they wanted Mattie to know they were thinking of him.
Left: Bridget drew a beautiful picture for Mattie with bugs and other creatures. It is a beautiful creation, and it makes Mattie's room very happy.
Right: I took a picture of Mattie's door. You can see that Linda has placed a sign on the door preventing others from entering, and Jenny brought Dr. Crazyhair (a Mattie creation) upstairs and he is guarding our door in a whimsical fashion! I wonder what people think about Dr. Crazyhair as they pass him by!
Mattie spent around two hours today in the childlife playroom. Mattie was enjoying his time with Linda. In fact, Mattie was so enthralled with the cart of toys Linda gave him, that he kept asking her whether all of these were really for him. The whole dialogue between Mattie and Linda was extremely touching and loving. So much so, that at one point, I got up from the table and had to blow my nose. I was beginning to cry, because Mattie and Linda have such an amazing rapport, and she has helped him in so many ways this year. In times when Mattie can't connect with others, it gives me great satisfaction that he always has Linda around who understands his ups and downs. I consider myself very fortunate to have two angels in my life. Ann is my angel of hope, and Linda is my angel of caring.
Left: Linda gave Mattie a toy that involved creating a circuit, in order to design a fully functioning vehicle. Peter and Mattie worked on this creation together. You can see Mattie hard at work.
Right: I introduce you to "Sweeper." I can't tell if it is a car or airplane, but Mattie loved it!
Left: We then got creative, and we decided to test Sweeper's skills on knocking things over. So Peter, Mattie, and Linda designed a Fenway Park replica, and a Yankees Stadium replica. The test was to see who Sweeper could knock down. In other words, which stadium or team in a way is stronger, the Red Sox or the Yankees. This competition took on a life of its own!
Right: You can see Fenway Park, the home of the Red Sox, and Yankees Stadium in blue!
Left: I hate to break it to the Red Sox fans reading the blog, but Sweeper knocked over Fenway park quickly!
Right: Yankees Stadium remained standing!
As the afternoon continued on, Mattie received a visit from Jey, his "big brother" and Jenny and Jessie. Jey hasn't been feeling well lately, so the fact that he came up to see Mattie, meant a great deal. In fact Jey said something today, that I found very profound. He told me that all hospital employees need to constantly remind themselves that"It is easy to forget, but it is hard to remember." Meaning, it is easy to forget and also hard to remember why one became committed to helping people and to working in a hospital. After months or years, it can become just a job for some, and some forget that patients and their families are stuck here around the clock and many of us are suffering heartaches. Jey reminds himself on a daily basis NEVER to forget, and he says though it is hard to visit Mattie now, he is not turning away from something because it may make him uncomfortable or uneasy. To me, this was such a powerful and truly compassionate statement!
Left: Mattie is sitting at the table with Liz. Liz is helping Mattie create a story about a dog named, Harry. In fact, Liz wrote the story Mattie created and gave it to me at the end of the day. You can see Jey standing behind Mattie on the left.
Right: Mattie was surrounded by women this afternoon. All trying to make him happy and be engaged. Thanks Jenny and Jessie for coming up from the Lombardi Clinic to work with Mattie.
After his time in the playroom, Mattie came back to this room, and took his second chest x-ray for the day. However, as the night sets in, he is now in need of oxygen and is very edgy and agitated. It is so hard to be around Mattie when he is like this, especially when you are living in a two by four. I have yet to leave the PICU in days, and I feel so overwhelmingly tired. As I know so does Peter.
Tonight, before Kathleen (one of wonderful HEM/ONC nurses) ended her shift, Mattie called her in his room. Mattie knows that Kathleen likes monkeys. Bridget gave Mattie a Curious George balloon today, and Mattie thought Kathleen would love it. So when Kathleen came in, he showed her the balloon and then told her he wanted to give her a kiss. Which he did. Mattie and Kathleen have a wonderful rapport, and I am trying to capture these special times that Mattie initiates!
We want to thank the Bires family for a wonderful dinner tonight. We appreciate your continued support! Mattie actually ate a few french fries, but for the most part he isn't eating anything. Though thankfully he is getting more than half of his daily nutrients from TPN. Mattie appeared to have more energy today, and we would like to credit TPN for this in part. As we head into Thursday, I have several goals. Of course one is Cyberknife, but the other two involve planning ahead for Mattie's hospital discharge which is scheduled for Friday night or Saturday morning. I spoke with Dr. Synder tonight, Mattie's oncologist, and I told her my concern that Mattie is on IV morphine. I am NOT allowed to give Mattie IV morphine at home unless he is on a regulated pump machine, which at this point in time, Mattie doesn't need. So in essence Mattie must go back on morphine by mouth tomorrow. Mind you we would have given Mattie oral morphine all week in the hospital, but the pharmacy had trouble getting it to us in a timely fashion. The IV version could come up faster, and because Mattie was in pain, we went with the IV version, naturally. But it will be a transition going from IV meds to oral ones, since the relief time is VERY different. So that is the second goal for tomorrow. The third goal is to solidify Mattie's TPN dosage, so that this nutrient can be ordered through our in home supplier in time for our arrival at home. In addition, the in home supplier won't release this nutrient to us, unless they train us how to administer it. Frankly, I feel that Peter and I have the skills to figure this out, especially since we perform many more complex medical care on Mattie on a daily basis, but I am not fighting the system. I just want the medication. But as Dr. Synder told me tonight, I have become a medical doctor this year, and she considers me a vital part of Mattie's treatment team. I am not sure if she was just being nice or what, but I do feel that Peter and I have been instrumental to Mattie's treatment throughout the year.
I would like to end tonight's posting with seven messages. The first message is from my friend, Charlie. Charlie wrote, "What a horrible day Tues was. Unbelievable. I've often felt that if you want to rest you have to leave the hospital. I guess not much has changed. I simply don't understand the lack of customer service in a hospital; perhaps this quote says it better: "Biggest question: Isn't it really 'customer helping' rather than customer service? And wouldn't you deliver better service if you thought of it that way?" (Jeffrey Gitomer). I think the non medical hospital staff could use a seminar on "customer helping". I am sorry things seemed to go from bad to worse for you; if you tried to write a book about it, I am not sure anyone would believe it. If the situation with the light bulb were not so sad, it would be funny, however under the circumstances it is just one more bad event in a horrible day. As you've noted and so have others, Mattie is a child wise far beyond his years. I am sure he suspects that things are not going well and I agree with Dr Biel that Mattie's play likely reflects this especially since it is a recurring theme. I think if/when the time comes to speak with Mattie about this you will find he probably already knows.I know you were trying to decide if you wanted Mattie at the hospital or at home as the cancer progresses; it was pretty clear from the blog today that you would rather be at home if it is at all possible. If Tuesday was any sample of how things go, in spite of the love and care of the nursing staff, I can totally understand your feelings on this subject. All I can say is that I pray Tuesday night goes smoother, that Mattie has less pain and that the radiation does what it is supposed to do. And I hope you and Peter do manage to get some rest in a very unrestful environment."
The second message is from one of my wonderful former students. Jessica wrote, "You say you still want emails, and I so I nervously take you for your word, and write today. I don't have words to express how devastated I am for Mattie, you, Peter, and the rest of your extended family and friends. I can only tell you that as I write this, tears are streaming down my face. I fear writing the wrong thing, showing support in some way that will be patronizing, too simplistic, not what you need to hear. It's the budding-therapist in me over thinking, the budding therapist you helped to mold. And I wonder if you realize that you've been teaching a graduate school class on grief these past 12 months through your blog? You've been teaching through primary source material, your material, that you have bravely shared with the world. I feel lucky to have been allowed a glimpse into the painful world you've been living in, and feel that I am a better person for it. And though there is so much more I want to say, to talk about with you, now is not the time. So today, please accept my virtual hug. It is one of those big bear hugs, with wide reaching arms that hold tightly and don't let go, filled with love and sorrow. One for you, Peter, and Mattie."
The third message is from my teaching assistant and friend, Carrie. Carrie wrote, "Hi Vicki, just finished reading about your heavy day yesterday. I too, was unable to sleep last night I awoke at 1am and 2am and just prayed as you and your family came to my mind along with all the others in pain in our world. Bless your little heart, I was crying and laughing at the same time reading your blog this a.m.. The story with the lightbulb is hysterical in all of the relativeness. I think it is symbolic to what you are living through; vulnerability and just wanting a light! Take care and I am so very proud of you and your talk with Dr. Biel. I have read books on children being aware of this and acting this out in play I was not suprised by Mattie's play. I completely agree with Dr. Biel's impressions. You are a brave brave woman Vicki. God has only given you what you can handle and you are blessed!"
The fourth message is from my colleague and friend, Denise. Denise wrote, "As you go into the night, when fear seems to become overwhelming, please know that the light of the love people have for all of you surrounds you. In the dark stillness, we are behind you, holding you all in our hearts and sending you strength and support on your journey."
The fifth message if from my friend, Julie N. Julie wrote, "There are no words to convey the depth of this sorrow, nothing to say or to do. Today I am just reaching out to let you know you are in my heart. Mattie may be losing the battle to cancer, as you say on the blog, yet he touched so many lives and so many hearts. I love him, pure and simple, and the whole community fell in love with him along the way and around the world. You have been such a loving mom (you are loving parents) and your love permeates everything and flows through Mattie and can never ever die. Not ever. Love is precious and it is yours and can never be taken away. I am holding you in my thoughts and prayers and pray, too, that Mattie finds peace."
The sixth message is from Carrie's mom. Elizabeth wrote, "How important for you to remember that Mattie came to this world chosing you and Peter for his parents and knowing before he arrived that this path he has chosen would bring thousands of people in touch with the meaning of love! He has had an important and painful mission. He has been and continues to be completing it so beautifully. Your family through this blog has brought a constant reminder of the goodness and love that exists in our world. I weep because I cannot imagine the pain with which you are dealing. You see, I love Carrie more than life itself. If I knew I was to lose her, I doubt that I could take another breath. I have been following the three of you while Mattie has taken this journey and you have been in my prayers and thoughts daily for over a year now. Words now leave me, but this poem is one of my favorites..."
We Trust I falter where I firmly trod,
And falling with my weight of cares,
Upon the great world's altar stairs
That slope through the darkness up to God,
I stretch lame hands of faith and grope,
And gather dust and chaff, and call,
To what I feel is Lord of all,
And faintly trust in the larger hope. ~ Alfred Lord Tennyson
The final message is from my mom. My mom wrote, "When did Mattie sense that he had reached the point of no return? The ghost house play described by Dr. Biel sends a chilling message to the adult world that Mattie knows he has to move on from his childhood life with his parents, family and friends to a place beyond where healthy children are not called and therefore must not be allowed to enter. In the deep recesses of his subconscious mind, he recognizes that his spirit must seek another home as his earthly body signals that it can no longer provide him the sustenance he needs to support him in human form. He is very clever and rationalizes that he must take the next step in the process to prepare for the inevitable. That is: Where will I go next and what will it be like? Not very unlike the rest of us who try to figure out what lies beyond our human experience and what happens to us after death. As a big fan of Scooby Do, he has incorporated the ghost story themes as the basic element of what must lie beyond the beyond and has thrust himself into it and found a role that suits his childhood understanding of detachment and separation from his human existence. He calculates with adult comprehension and intellectual honesty that his parents will not be coming with him. So he follows through by having a conversation with his mother to let her know that he's fine with her having another baby, reasoning that she will no longer have him to care for and that the other baby will take his place so she won't have time to miss him too much!! As if he could be replaced that easily! I have admired his heroic courage from the outset when this nasty, despicable disease struck and forever ended his carefree childhood, forcing upon him endless treatments and surgeries that tested his endurance and stamina while he countered by doing everything in his power to try to reclaim his body and save his life. He proved in his short life how to be a brave soldier and showed us how to fight to the bitter end against a formidable foe. We can all learn much by his example. Now, he has achieved a profundity beyond my wildest comprehension displaying through role play the wisdom of a wise old man although only 7. He is telling the world by his actions that he accepts that his spirit can no longer fight against the deadly enemy of cancer while expressing his fears through role play to communicate his concern for what he is going through to those who will listen. All from a 7 year old who is suffering in pain who has the clarity of vision to rationalize about the inevitable consequences of his illness and still worry about how his parents will go on without him!! I always knew Mattie was an intellectually gifted child but his prescient understanding of life and love is so touching in one so vulnerable facing the unknown. Mattie, you have given us many teachable moments in your short life and have by example provided us with an the ultimate instruction manual on how to face the end of our own lives with courage and strength."
August 11, 2009
Tuesday, August 11, 2009
Tuesday, August 11, 2009
Quote of the day: "Sometimes even to live is an act of courage." ~ Lucius Annaeus Seneca
Mattie took a nap on Monday from 7:30pm to 9:30pm. At 9:30pm, he awoke, and then couldn't go back to sleep until 2am. He was experiencing a lot of pain. Ironically his pain is in his right arm. After his thoracentesis on Monday, Mattie was transferred from a stretcher back to his bed in the PICU. During the transfer, Mattie was moved onto his right side, so that all the sheets and blankets that were wrapped around him could be removed. Because he was under sedation, he did not feel any of this movement, however, I have a very vivid visual memory of this movement, because in hindsight, I realized this wasn't a good position for Mattie's arm. Sure enough, despite having massive tumors in his body, the pain he is experiencing and complaining about is from something that could have been avoided. Any case, I have to let that go, because I am carrying many other weights around with me at the moment. Needless to say, Mattie's pain is so intense, that in addition to his Fentantyl pain patch which he wears constantly, he is also on IV morphine every two hours. Last night Mattie tried to build a Lego model with Peter, but his heart just wasn't into it. We have at least two different Lego models that he started in the room, none of which he finished or wants to pursue. Mattie and I watched Scooby Doo episodes until early in the morning.
At 1am, we determined that Mattie was running an 101 fever. Never a good thing with an oncology patient. Because what that instantly generates is MORE testing. So besides taking tylenol, blood was also drawn from both of Mattie's central lines for cultures. In addition, he was started on antibiotics last night as well. The nights for me are always the worst, and it is funny how things seem to go awry at that time. Mattie was PICU status yesterday, and wasn't assigned a HEM/ONC nurse. However, the PICU nurses were wonderful with him and us. Though he is an oncology patient, you need to understand that most of the PICU nurses know him too, since Mattie had three major surgeries here. By 2am, I had it, I had to put my head down. I slept last night in a chair, and I forgot how much fun that is. Lord knows how I managed this for 11 months, but somehow when you think you are fighting cancer you can tolerate almost anything.
We also saw Brandon and his family this afternoon. Brandon's mom, Toni, gave me a big hug and told me she loved me. We love her and her family too, and we shall never forget the time we had together fighting cancer in the PICU.
This evening, Peter and I are wiped out. I can feel my head pounding, I can barely keep my eyes open, and of course my emotions are all over the place. I feel terrible for shutting down and not allowing people in our lives, but at this point, I really can't handle any in depth conversations. It is my hope that our readers understand where we are coming from. Despite not wanting face to face conversations, I still appreciate all your e-mails. We want to thank the May family for a wonderful home cooked dinner and for all the wonderful Lego gifts, and the Senior Saints t-shirt you gave Mattie. The chocolate covered strawberries are SO beautiful. Thank you for your support.
Mattie's fever is back to 101.5 tonight, and therefore is unable to leave the hospital for 48 hours. Mattie heads for his second round of Cyberknife tomorrow at 8am. So keep us in your thoughts and prayers. We are fighting intense fatigue, emotional turmoil, and the feeling of having no control in our lives.
I would like to end tonight's posting with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am so relieved that Mattie made it safely through the first stage of his treatment to relieve his pain. Leave it to Mattie to put right up front how he feels about the situation and his current inability to eat. I do so hope this makes the difference and he is soon back enjoying his donuts and vanilla shakes. When I read that you had fallen asleep after another night of virtually no rest and running around all day, all I could think was "I can't believe she lasted this long". Truly your energy level astounds me and I have no idea where you find the strength to keep on going even though I know there is no alternative. I hope that tomorrow we will read that the treatment with the clot buster worked and Mattie's line is again clear.Whether you decide to continue the treatment at Georgetown or switch Mattie to an outpatient for the remaining radiation treatments, we will all be here with you praying for its success in helping make Mattie more comfortable."
The second message is from my friend, Mary M. Mary wrote, "I returned yesterday from my trip to Boston (yes, Boston, which I absolutely LOVE!), where Bob and I attended a wedding on the campus of Tufts University. Although it was a wonderful wedding, I was distracted, as my mind kept going back to you, Peter, and Mattie. I wake up each morning thinking of all that you are going through. The unfairness of your situation and the unanswerable questions about life's painful and unexpected events keep nagging at me. I'm rereading the book I recommended to you, "if I get to five" by Fred Epstein, MD, the pediatric neurosurgeon who writes about his experience with kids like Mattie, who have undergone such painful and traumatic illness. His insight on how kids feel about being sick and facing death is very insightful. It is comforting too. His perspective is that kids are unbelievably strong and resilient, even understanding and accepting their fate, when their parents are having a hard time. Although there are many inspiring stories and memorable insights, one paragraph particularly stand out to me at this time, Dr. Epstein writes, " Among all our fears, our fear of death is the most powerful. Death is so scary that we deny its hovering presence in our lives. In reality, death is our constant companion; it's proximity is part of what makes life so glorious. To me, suffering is the ultimate evil, not death. Love is the ultimate good, because it outlasts suffering and even death." If you decide to read this book, I hope it is a comfort to you at some point during or after all you are going through. I think it's meant to comfort parents and anyone who has gone or is going through what you are experiencing now. God bless you, Peter, and your darling little fighter, Mattie.
The last message is from another one of my wonderful former students. Jeff wrote, "I am one of your former students. I was in the cohort program at GW. I have been following Mattie's blog for many months since learning of his initial diagnosis. First and foremost, I wanted to extend my sincere condolences about the news you received last week. I read that blog entry with a heavy heart, and I can't even begin to imagine what you and your family have been through over the past year. I hope that you take comfort in the fact that Mattie has been such an inspiration to many people, which is evident from the many pictures you post on your blog, and especially to those who have never even met him. The stories that you post on a daily basis truly prove that he is one amazing kid, and he is truly blessed to be surrounded by such amazing people. It seems that you have a wonderful support system of family, friends, colleagues, and medical personnel who have been fighting for Mattie. I am sure they have truly been amazing. My sister works as a nurse in the PICU at a hospital in New York, and I always wondered how she could handle working in such an emotional and difficult environment. However, after reading about Mattie's various times in the hospital and seeing how the nurses have worked with and helped Mattie, I now understand how it can be a fulfilling career choice. So much of the medical "stuff" can be so confusing, so I am sure it helps having helpful staff to walk you through everything. I have always had a great deal of respect for you professionally, and after reading Mattie's blog, I have a great deal of respect for you personally as well. As a teacher, I thought you were one of the best I had during my counseling program at GW, and it is obvious that Mattie is extremely lucky to have you as a mother - your courage, persistence, devotion, strength, and love is truly evident in your blog postings, and it is admirable how you have remained this way throughout this difficult time. The pictures that you post, and Mattie's smile, are truly inspirational (I especially love the one of you and Mattie riding in Speedy Red! That one is a classic!) as is all of the wonderful things that people have organized for Mattie, such as the trip to the Lego store. He seems to be quite the Lego maniac! Most importantly however, Mattie's resilience and strength throughout this ordeal has been amazing to me. It is unbelievable what a child of his age can endure - most adults would not be able to go through what he has, but he seems to have that fighting spirit! I am sure that you have been flooded with emails, but I really wanted to take a moment to write to you. I know I am just one of many, many people that has been touched by Mattie's situation, and I will certainly be keeping Mattie in my prayers. Thank you for sharing with so many of us through Mattie's blog. I know so much more than words is needed during this time, and if there is ever anything I could do for you, please don't hesitate to ask."
Quote of the day: "Sometimes even to live is an act of courage." ~ Lucius Annaeus Seneca
Mattie took a nap on Monday from 7:30pm to 9:30pm. At 9:30pm, he awoke, and then couldn't go back to sleep until 2am. He was experiencing a lot of pain. Ironically his pain is in his right arm. After his thoracentesis on Monday, Mattie was transferred from a stretcher back to his bed in the PICU. During the transfer, Mattie was moved onto his right side, so that all the sheets and blankets that were wrapped around him could be removed. Because he was under sedation, he did not feel any of this movement, however, I have a very vivid visual memory of this movement, because in hindsight, I realized this wasn't a good position for Mattie's arm. Sure enough, despite having massive tumors in his body, the pain he is experiencing and complaining about is from something that could have been avoided. Any case, I have to let that go, because I am carrying many other weights around with me at the moment. Needless to say, Mattie's pain is so intense, that in addition to his Fentantyl pain patch which he wears constantly, he is also on IV morphine every two hours. Last night Mattie tried to build a Lego model with Peter, but his heart just wasn't into it. We have at least two different Lego models that he started in the room, none of which he finished or wants to pursue. Mattie and I watched Scooby Doo episodes until early in the morning.
At 1am, we determined that Mattie was running an 101 fever. Never a good thing with an oncology patient. Because what that instantly generates is MORE testing. So besides taking tylenol, blood was also drawn from both of Mattie's central lines for cultures. In addition, he was started on antibiotics last night as well. The nights for me are always the worst, and it is funny how things seem to go awry at that time. Mattie was PICU status yesterday, and wasn't assigned a HEM/ONC nurse. However, the PICU nurses were wonderful with him and us. Though he is an oncology patient, you need to understand that most of the PICU nurses know him too, since Mattie had three major surgeries here. By 2am, I had it, I had to put my head down. I slept last night in a chair, and I forgot how much fun that is. Lord knows how I managed this for 11 months, but somehow when you think you are fighting cancer you can tolerate almost anything.
So we shut down at 2am, but Mattie was up periodically through the night, not to mention IV pumps were going off. I don't think I shall ever forget the beeping of an IV pump, it is permanently ingrained in my head. Despite going to bed so late, and period wake ups throughout the night, that did not stop the steady level of traffic that started to float through Mattie's room at 7am. In fact, at 7:30am, a cleaning person entered the room, said good morning loudly, and proceeded to bang around and remove trash. Mind you, the lights were off in the room, and we were all sleeping! I am so exhausted, but I could feel internally that I wanted to just scream. First of all, there is NOTHING good about the morning, and second, does this woman realize we have been up most of the night, not to mention most nights for the last 12 months? Probably not! Does she care, or have compassion that she is walking into a room of a seven year old who is terminally ill? So many things were running through my mind, but the level of insensitivity I experienced today did not end there. Normally, if I was rested, and in a better place psychologically, I could rationalize many of the behaviors I was accosted with today, but this week, I am ABSOLUTELY in no mood for anything.
At around 9:30am, a nurse from sedation entered our room to let me know that she was coming for Mattie in 15 minutes to take him downstairs. I just looked at her, since I was in my pajamas and half out of it, I asked her where she was taking him. She told me he was scheduled for Cyberknife at that time. I told her she was incorrect, his appointment was at 3:30pm. None the less, I learned that the schedule had been changed and instead of someone telling me, so I could prepare Mattie, this did not happen. I was livid and I snapped. I decided to take a shower, while Peter took Mattie down to the Cyberknife department, which is in the basement of the hospital. It is like heading to the catacombs! While they were downstairs, I attempted to take a shower, only to learn that there was NO light in the shower room. We reported the need for a light bulb change, and then I grabbed a flashlight and took a shower (this only added to my already high stress level). But I am telling you this story to highlight more of the incompetence I experienced today. After I got out of the shower, someone from the facilities department came to change the light bulb. Mind you, I was only partially ready, and my hair was dripping. The lack of privacy I think particularly got to me today. For the past 12 months, I have learned to brush my teeth and handle all personal matters in front of just about anyone. It is a humbling experience for sure, but now I am more fragile, and the lack of personal space today, was a major problem. So this fellow who came to change the light became my own personal comedy show today. Mind you we reported that the light was out, but when he showed up he did not have light bulbs with him. He told me instead that he would be right back with a new bulb. He came back about 15 minutes later, but this bulb didn't fit into the socket. This craziness went on three times, until it finally dawned on him that maybe he should actually unscrew the light bulb and take it with him to the parts department. It is now almost 7pm at night, and guess what? We still don't have a light bulb. So apparently it takes 24 hours here to change a light bulb. Maybe longer, we shall see! While this fellow was jumping in and out of our room, I then had another person visit. A cleaning person. She saw I was brushing my teeth and using the sink, but she proceeded in anyway, and then it became a competition between us for access to the sink. She was literally hovering around me. I finally gave up, and took myself, and all my things into the bathroom and closed the door behind me. You need to understand that the bathroom is as small as a closet. But I just needed a minute to myself, where no one was going to be bothering me. My stress level kept building, and as it was building one thing came to my mind immediately! Am I going to let Mattie die in such an environment?! An environment where I can't think for a second, where there is no privacy to be with your emotions, and where his room is like a super highway? I want to clarify that I am NOT talking about the nurses and the doctors. They have been absolutely fantastic. It is all the extraneous other non-essential personnel who are not only clueless but insensitive to the children they interact with. The answer to my questions became a resounding NO!
This morning Jenny, one of Mattie's art therapists, e-mailed me and I told her how upset I was. I have a feeling Jenny mobilized forces, and then of course Linda entered the scene. Linda came up to get me at 11am, to bring me down to the Cyberknife Department. I waited for Mattie there. His procedure was over 90 minutes. During the procedure he was completely sedated. The sedation team was outstanding, as they always are. Debbi (our sedation nurse angel) is on vacation, but Norma, her colleague is helping us. We love Norma too, and she came out periodically to let me know how Mattie was doing. The Cyberknife procedure is being staged for Mattie. The doctor is first targeting the large tumor behind the rib cage. He radiated it today for 90 minutes, and will radiate it tomorrow for another 90 minutes. He will then let us know when the gold seeds have settled in place in the liver to start Cyberknife in that location. It may be later in the week or even next week. Mattie tolerated the procedure very well today, and even came out of sedation quite well. But Mattie is edgy, wants no visitors, and even turned Linda away. That is always my gauge to how well Mattie is doing. So in addition to dealing with the emotional toll of Mattie's diagnosis, Peter and I are working around the clock to care for him and to play with him. This is a lot for us to take on, I assure you! He is complaining non-stop, cries because he can't eat, and wants 1oo% of our attention.
I think it was very clear today that I was upset. At one point, Gail, our patient advocate came by to visit me. Mind you I did not call her, she came on her own accord because she got wind to my level of frustration. I explained to her all the insensitive facility people who came barging through Mattie's room today, and Gail immediately got on it. The PICU staff have also offered to move us to a better room, since we are in Room 1, the worst room on the floor, but Mattie refuses to move. Kathleen, one of our great HEM/ONC nurses tried to rationalize with Mattie about a room change, but he wasn't budging. Gail came back later in the day to let me know that NO ONE will be allowed in our room, without checking with our nurse first!
I also met with Ellen, Mattie's dietitian this afternoon. Ellen told me how Mattie's TPN will be modified. Apparently you can't supplement someone's diet with calories all at once, you have to gradually do this. Ellen gave me the analogy of giving Mattie 10 snicker bars at one time. I wouldn't do that because that would be sugar overload, same thing with TPN. The electrolytes, fats, proteins, and sugars need to be introduced slowly over four days. She showed me Mattie's height and weight on a growth chart, and no surprise to me, he is way below the 50th percentile. In fact, I would say he is in the 10th percentile for weight if I remember the curve correctly.
However, what caught my attention today, was my meeting with Dr. Biel. Dr. Biel is Mattie's psychiatrist. As you know, Mattie has been meeting weekly with Dr. Biel. Dr. Biel discussed with me the play scenario that Mattie plays each time he comes to his office. This was the first time hearing about this. Mattie always plays out the same scenario, and the scenario was initiated by Mattie. He also re-initiates it during each session. Dr. Biel is aware of Mattie's close connection to Jocelyn and Brandon (both cancer survivors), and he is also aware of the difficulties Mattie has been having transitioning back to his outside world. Any case, here is a synopsis of the play scenario. The set is a large house that is inhabited by three ghosts (in essence Mattie, Jocelyn, and Brandon). Mattie is one of these ghosts. The ghosts do not want any worldly possessions in their house, and in each session, Mattie removes anything that is in the house, because he tells Dr. Biel that the ghosts have no use for these things. Also in the play scenario there is a group of children. Mattie does NOT play a child, but instead as a ghost works hard at keeping the children out of the house. He says these children can't and don't interact with the ghosts. The children are not a part of this ghost world. As Dr. Biel was telling me this story, I just paused. Now that we know about Mattie's terminal condition, both he and I couldn't help but feel that on some profound level Mattie is telling us he is different, and perhaps he even knows that he is no longer a child. He is actually exploring or playing out what life looks like after death. I told Dr. Biel, that it is hard to evaluate this without putting my own lens on the situation. Perhaps the scenario can be easily explained away by the fact that Mattie has just watched too many Scooby Doo episodes. But Dr. Biel agreed with me, that this was a more introspective and existential form of play Mattie was performing. I told Dr. Biel that my own seven year old is exploring death better than I am. I also told Dr. Biel something I shared with Ann a few days ago. Mattie told me a few days ago that I should have another child. At the time, I talked to him about it, and I concluded he was just looking for a play partner. But Ann felt that Mattie was giving me permission to eventually move on, if Mattie dies. I hadn't thought about it this way, because having another child seems so disrespectful to Mattie and I am deeply wounded from this whole experience, but Dr. Biel concurred with Ann's analysis. Mattie, at least on a subconscious level, is exploring his own mortality and how his mortality will impact others. Amazing to me! I spoke to Dr. Biel about the fact that I can see pain in many of the hospital staff who know us. He told me that he has had a meeting for all the hospital staff, because everyone is concerned about how to help Mattie in the best possible way. They also know that Mattie is very clever, and they all want to be on the same page about how to respond to his questions, in case he asks them things about his situation when Peter and I are not around. I was impressed that Dr. Biel and the staff had such a meeting. Dr. Biel told me not to worry about the staff, though my natural instinct is to worry about others, he told me that the staff has outlets to handle this type of stress and grief . So in essence the message was to worry only about my family right now.
We also saw Brandon and his family this afternoon. Brandon's mom, Toni, gave me a big hug and told me she loved me. We love her and her family too, and we shall never forget the time we had together fighting cancer in the PICU.
This evening, Peter and I are wiped out. I can feel my head pounding, I can barely keep my eyes open, and of course my emotions are all over the place. I feel terrible for shutting down and not allowing people in our lives, but at this point, I really can't handle any in depth conversations. It is my hope that our readers understand where we are coming from. Despite not wanting face to face conversations, I still appreciate all your e-mails. We want to thank the May family for a wonderful home cooked dinner and for all the wonderful Lego gifts, and the Senior Saints t-shirt you gave Mattie. The chocolate covered strawberries are SO beautiful. Thank you for your support.
Mattie's fever is back to 101.5 tonight, and therefore is unable to leave the hospital for 48 hours. Mattie heads for his second round of Cyberknife tomorrow at 8am. So keep us in your thoughts and prayers. We are fighting intense fatigue, emotional turmoil, and the feeling of having no control in our lives.
I would like to end tonight's posting with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am so relieved that Mattie made it safely through the first stage of his treatment to relieve his pain. Leave it to Mattie to put right up front how he feels about the situation and his current inability to eat. I do so hope this makes the difference and he is soon back enjoying his donuts and vanilla shakes. When I read that you had fallen asleep after another night of virtually no rest and running around all day, all I could think was "I can't believe she lasted this long". Truly your energy level astounds me and I have no idea where you find the strength to keep on going even though I know there is no alternative. I hope that tomorrow we will read that the treatment with the clot buster worked and Mattie's line is again clear.Whether you decide to continue the treatment at Georgetown or switch Mattie to an outpatient for the remaining radiation treatments, we will all be here with you praying for its success in helping make Mattie more comfortable."
The second message is from my friend, Mary M. Mary wrote, "I returned yesterday from my trip to Boston (yes, Boston, which I absolutely LOVE!), where Bob and I attended a wedding on the campus of Tufts University. Although it was a wonderful wedding, I was distracted, as my mind kept going back to you, Peter, and Mattie. I wake up each morning thinking of all that you are going through. The unfairness of your situation and the unanswerable questions about life's painful and unexpected events keep nagging at me. I'm rereading the book I recommended to you, "if I get to five" by Fred Epstein, MD, the pediatric neurosurgeon who writes about his experience with kids like Mattie, who have undergone such painful and traumatic illness. His insight on how kids feel about being sick and facing death is very insightful. It is comforting too. His perspective is that kids are unbelievably strong and resilient, even understanding and accepting their fate, when their parents are having a hard time. Although there are many inspiring stories and memorable insights, one paragraph particularly stand out to me at this time, Dr. Epstein writes, " Among all our fears, our fear of death is the most powerful. Death is so scary that we deny its hovering presence in our lives. In reality, death is our constant companion; it's proximity is part of what makes life so glorious. To me, suffering is the ultimate evil, not death. Love is the ultimate good, because it outlasts suffering and even death." If you decide to read this book, I hope it is a comfort to you at some point during or after all you are going through. I think it's meant to comfort parents and anyone who has gone or is going through what you are experiencing now. God bless you, Peter, and your darling little fighter, Mattie.
The last message is from another one of my wonderful former students. Jeff wrote, "I am one of your former students. I was in the cohort program at GW. I have been following Mattie's blog for many months since learning of his initial diagnosis. First and foremost, I wanted to extend my sincere condolences about the news you received last week. I read that blog entry with a heavy heart, and I can't even begin to imagine what you and your family have been through over the past year. I hope that you take comfort in the fact that Mattie has been such an inspiration to many people, which is evident from the many pictures you post on your blog, and especially to those who have never even met him. The stories that you post on a daily basis truly prove that he is one amazing kid, and he is truly blessed to be surrounded by such amazing people. It seems that you have a wonderful support system of family, friends, colleagues, and medical personnel who have been fighting for Mattie. I am sure they have truly been amazing. My sister works as a nurse in the PICU at a hospital in New York, and I always wondered how she could handle working in such an emotional and difficult environment. However, after reading about Mattie's various times in the hospital and seeing how the nurses have worked with and helped Mattie, I now understand how it can be a fulfilling career choice. So much of the medical "stuff" can be so confusing, so I am sure it helps having helpful staff to walk you through everything. I have always had a great deal of respect for you professionally, and after reading Mattie's blog, I have a great deal of respect for you personally as well. As a teacher, I thought you were one of the best I had during my counseling program at GW, and it is obvious that Mattie is extremely lucky to have you as a mother - your courage, persistence, devotion, strength, and love is truly evident in your blog postings, and it is admirable how you have remained this way throughout this difficult time. The pictures that you post, and Mattie's smile, are truly inspirational (I especially love the one of you and Mattie riding in Speedy Red! That one is a classic!) as is all of the wonderful things that people have organized for Mattie, such as the trip to the Lego store. He seems to be quite the Lego maniac! Most importantly however, Mattie's resilience and strength throughout this ordeal has been amazing to me. It is unbelievable what a child of his age can endure - most adults would not be able to go through what he has, but he seems to have that fighting spirit! I am sure that you have been flooded with emails, but I really wanted to take a moment to write to you. I know I am just one of many, many people that has been touched by Mattie's situation, and I will certainly be keeping Mattie in my prayers. Thank you for sharing with so many of us through Mattie's blog. I know so much more than words is needed during this time, and if there is ever anything I could do for you, please don't hesitate to ask."
Subscribe to:
Posts (Atom)
