Mattie Quote of the day: "You think I am happy, but I am NOT really happy. I am hungry, but I can't eat."
Quote of the day: "We have to believe that even the briefest of human connections can heal. Otherwise, life is unbearable." ~ Agate Nesaule
We all had a very long night on Sunday. None of us went to bed before 1:30am. Mattie was very upset about his dressing change, and then complained of pain throughout his body. On top of the pain, he also had nausea. It was the night that seemed like it would never end, and I experienced a great deal of stress over this upcoming week of treatment.
When we got to the hospital at 9:30am, we checked Mattie into the Lombardi Clinic and met up with Linda, Jenny, and Jessie. I have no idea where we would be without Linda. She helped us throughout every step of today's procedures. While in clinic, Mattie had his vitals taken and his blood drawn. However, the red lumen of his broviac is blocked and we are unable to get blood return from it. This is an issue, because the red lumen is the larger of the two lumens of the central line, and it is usually used for blood testing. So tonight, we are in the midst of trying to open it back up. His nurses are using Tissue Plasminogen Activator (abbreviated tPA), which is a protein involved in the breakdown of blood clots. Let's keep our fingers crossed that the second administration of tPA works, because the first dosage made no difference what so ever.
Linda brought her sister's DS Nintendo player to the hospital today, so she could play an electronic game with Mattie. Mattie and Linda played a race car game for a while, since his procedure was delayed today by 90 minutes. I even played against him and LOST terribly! I have perfected the art of losing. Before the procedures began, we had the opportunity to meet Dr. McCollough. He is an Interventional Radiologist. Since I had never met him before, you can imagine my level of anxiety. He told us that he was going to place the gold seeds first into Mattie's liver, before doing the thoracentesis. He said this would be better because if he did the thoracentesis first, Mattie may land up coughing too much, and then he would be unable to effectively place the gold seeds into his body, which are markers for radiation. Mind you, Mattie's oncologist told me it was important to do the thoracentesis first, since it would be important to get all the fluid out of his lungs, before he sat on the procedure table under sedation for a long period of time. So to me, the oncologist and radiologist were presenting me with different information. In addition, Dr. McCollough explained the risks of a thoracentesis. One major risk is a pneumothorax (a term for collapsed lung). This can occur when air leaks into the space between your lungs and chest wall, creating pressure against the lung. In addition, there was also the possibility of liver damage from the insertion of the gold seeds. I am not sure why I did not think all of this through, WELL I KNOW WHY, I am traumatized, but when I heard all these risks today, I just felt overwhelmed.
By 12:30pm, Mattie's sedation was underway for the thoracentesis and the placement of the gold seeds for Cyberknife. While Peter and I were waiting in a small waiting area, I noticed a couple walk in. It was Senator Joe Lieberman and I assume his wife. We sat in a room that seemed as big as a walk in closet. So much for patient privacy! Last July this would have phased me, but now I freely talk about the most sensitive of subjects right in the middle of the hospital hallways. None the less, one thing was clear to me. When you are dealing with an illness, that alone takes priority, but it also humanizes all of us. Meaning that today it did not matter what so ever that I was sitting with an influential policy maker and politician feet from me. The only thing that mattered was Mattie and his health. When you are dealing with life and death decisions, you realize that people you perceived before as powerful, are no longer that. They are human, just like the rest of us, they get sick, they get upset, and basically they have no control over what is happening to them. Suffice it to say, I did not speak to Senator Lieberman, though Peter did (they were comparing blackberrys!), instead, I felt the need to give him his space, privacy, and respect for whatever reason brought him and his wife to the hospital today.
We want to thank Carrie and Honey for coming today during the lunch hour and dropping off food for us. I ate lunch while waiting for Mattie's procedure to be completed. Thank you so much for the cherries and chocolate! I apologize to all our helpers who are stopping by the hospital this week to deliver things to us. In the past, I would find a way to say hello and chat, but this week I am just not up for conversation. I do not want our helpers to think we are ungrateful, we are just working hard to keep it together, so that we can take the best possible care of Mattie now. If I break down in front of him, he will put two and two together, and this won't be helpful to him. As I accept Mattie's fate, I am sure in time I will be able to embrace a more free dialogue, but for now, I hope you all can accept where I am at. We also want to thank Honey and Carrie for the wonderful additions they gave him today for Speedy Red. He really wanted a horn and license plate, so thank you for getting him these wonderful accessories! They made him happy!Mattie's procedures were quick today, maybe 30 minutes maximum. However, after the procedures, they kept him sedated for another hour to perform extensive CT scans on his whole body (just so you know we learned that there are NO tumors in the brain). Dr. Shad, the director of the Pediatric Lombardi Clinic, was the attending on call today, and she met with us to show us the 300ml of fluid that was pulled from Mattie's lungs. The fluid was all bloody, and not clearish yellow. This was a definite indication of malignancy. I asked Dr. Shad if this surprised her because I expected as much, but I guess she felt it was important to show us the actual product.
After the CT scan was over, I walked up with the sedation team and Mattie to the PICU. Mattie was heavily sedated at that point. Many of the elevators weren't working in the hospital, and our intensivist who was traveling around with Mattie (since Mattie was sedated and his vitals needed to be heavily monitored) helped block off an elevator so that we could take Mattie upstairs. However, I was surprised by the reactions of others around us. They were irritated that they had to wait for another elevator. I could tell the sedation team and the intensivist were taken aback by this insensitive behavior, and they felt the need to apologize to me. They were upset that others couldn't see they were transporting around a sick child. That the need of others to board the elevator superseded a sick child! Frankly after this year, nothing really surprises me anymore. I get disappointed in people's reactions, but not surprised.
When Mattie got to the PICU, he was still on oxygen and under the effects of sedation. He was hooked up to every monitor possible, but was holding his own. We learned that Mattie desated once during the procedure, which means a greater than 3% drop in oxygen levels, but we were told this was to be expected. Mattie needed oxygen for several hours post-procedure, but then woke up and seemed to hold his own. He was very excited to open his gifts he received for Speedy Red this afternoon. I snapped a picture of him holding the horn! You can also see Sunshine, the stuffed animal albino python on the bed with Mattie. Sunshine was given to Mattie by Jocelyn (a fellow osteo patient), and he is very fond of this gift!
Later in the day, Mattie started on Total Parenteral Nutrition (TPN). TPN supplies all daily nutritional requirements. TPN can be used in the hospital or at home. Because TPN solutions are concentrated and can cause thrombosis of peripheral veins, it must be first administered in the hospital, before our in home supply company will allow us to infuse it there. I always refused TPN in the past, but now that Mattie doesn't have a functioning GI tract, we have no other choice. He needs nutrition to keep him alive and strong. Mattie and Peter worked on a Lego set today, and while they were building, I fell asleep. The emotional toll of all of this is wearing me out, and I am so tired I could spend days in bed, and still probably feel fatigued. However, as the evening wore on, Mattie was getting edgy and hungry. He desperately wanted to eat. He sent Peter and I both out on wild goose chases today for food, but he just can't eat the food. In fact, at one point, he yelled at Peter and I and said, "you think I am happy, but I am NOT really happy. I am hungry, but I can't eat." All of this breaks your heart, but after this tirade, he then fell asleep. He has been asleep for two hours now, but awoke at 10pm.
While Mattie was sleeping, I had an opportunity to eat dinner. We want to thank the Doane family for a wonderful dinner from Clyde's. Thank you Mary for the chocolate cake, my medicine to get through the night! Mattie loves the Star Wars legos too! We appreciate your family's thoughtfulness and generosity! Mattie did eat about four french fries before he fell asleep, and he did try the vanilla shake. I went out into the hallway tonight to put things away in the refrigerator. It was at that time many of Mattie's nurses came up to talk with me. Many of you may recall Brenna, the outstanding PICU nurse who cared for Mattie during his sternotomy. Brenna is the one who designed the Sponge Bob lake breathing exercise. Brenna spoke to me for a while, and so did Ellen. Ellen is an amazing HEM/ONC nurse, and she is as broken up about Mattie as we are. The nurses couldn't be more helpful, and the tone on the floor is that they will do whatever we need to get us through this. None the less, it is hard to see sadness in the eyes of people who have taken care of Mattie. It is an unsettling feeling to be in the PICU, a place where we always turned to, to fight Mattie's disease. I am having a hard time accepting this now as a place that will help make Mattie comfortable as he lives out his time with us. I have many emotions tonight, none of which are conducive for sleep and peace.
Mattie will begin Cyberknife tomorrow at 3:30pm. He will have a staged approach, because they want to treat the 2cm tumor behind his ribcage first. That one is easier to target and doesn't need the gold seed markers. This tumor will be radiated for three days, and the tumors on his liver, will be radiated for two days thereafter, for a total of five days of treatment. Apparently the gold seeds implanted in the liver need a few days to settle into place before you can do Cyberknife in that area. We will be in the hospital tomorrow, but we have been presented with the option of doing the remaining treatments on an outpatient basis. So after tomorrow, I will have a better idea of what we plan on doing. However, the CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment delivers beams of high dose radiation to tumors with extreme accuracy. Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting. In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively. It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.I would like to end tonight's posting with four messages I received today. The first message if from my friend Charlie. Charlie wrote, "When I read the blog this morning and saw the news about Paul all I could think was "another warrior has ended his fight." May he be at peace and I pray for his parents to have the strength to go on.It was lovely to see Mattie up and about in the car; the smile on his face is just amazing. And how amazing that he was able to build that lego taxi without directions but only using a model. What a wonderful group of people at the Lego store to give him this opportunity to do what he loves (i.e. building legos) and thank you Linda for arranging it. Mattie's ability to grasp the mechanics of things is truly a gift; I find myself wondering what buildings will not be built, what creations will not be designed because Mattie is not here. Mattie's spirit and sense of humor are so special; I find myself smiling through my tears now as I read the blog each day. Know that we are with you in spirit this morning as you prepare Mattie for another procedure, that we will all be waiting for the news and that you have our love and support."
The second message if from a former student of mine. Betsy wrote, "I am a former student of yours (school counseling - alexandria campus). I e-mailed you last summer when you first received Mattie's diagnosis and I've been reading the blog throughout the year. I am so sorry to hear that the cancer has spread. I lost my dad to cancer 3 1/2 years ago, and while losing a father is completely different than losing a child, I do remember the pain I felt when we heard that his cancer had spread. You feel like you have been fighting so hard with everything you have and the cancer just turns it's nose and says "too bad, so sorry". I can promise you that discovering the cancer can not be cured is one of the lowest points in this very painful process. What I wish for you and Peter, Mattie and all of his loved ones, is enough time to come to some form of peace before he goes. My dad lived a few more months after we learned there was nothing more that could be done. And while it's never enough time, we were all able to spend quality time with him and watch him come to a wonderful peace before he died. I know Mattie is only 7, but I do believe he understands on some level what is happening to him. And I hope that he is able to find peace with his illness and maybe even look forward to whatever adventures lie ahead for him after he leaves this world. This will help you in your grieving process immensely.My last thoughts are that you are an amazing teacher. I remember your class so vividly - I was pregnant with Lacey at the time and you were so helpful to me (Mattie was 1). Throughout this process you have been teaching Mattie the many gifts of life and showing him the love of a wonderful parent. Through your blog you are offering a road map to the world on how to handle the terminal illness of a beloved child. I don't know why this is happening to you, but you certainly are teaching us all how to be strong, independent, graceful, and alive with emotion even when life deals you a horrible hand.My thoughts and prayers are with you and your family. I will continue to read Mattie's blog and learn from you. And I will pray everyday that Mattie has time to come to peace and that you, Peter and Mattie will have many enjoyable moments before he passes."
The third message if from one of the wonderful HEM/ONC nurses we had the opportunity to work with in the fall. CR joined the peace corps and is working in Ethiopia. However, Mattie captured her heart and she reads Mattie's blog and stays connected. CR (short for Cecilia Rose) wrote, "Dear Brown Family-I have been reading the blog every day now that I've been home and the August 5th posting was such a blow. I wish I had been able to write sooner but I've been searching for the right words. However, after reading Emily W.'s email last evening, I realized there are never going to be adequate words in a situation like this so I might as well just sit down and write regardless of how truly lacking the words will be.I want to start first by saying that it has been such a blessing to get to know Mattie and your family this past year. I don't think you will ever know the extent of the impact and the number of people whom your story has touched. I know I have shared his story and the website with many friends and family members and I am constantly asked about my friend Mattie.I know you have certainly impacted my life and I think of your family often. Actually, whenever I am complaining about a 'tough' (even as I write that word I recognize that my 'tough' doesn't even compare) day in Ethiopia all I have to do is think of Mattie (and that wonderful smile of his) and realize that there are many who are fighting much more difficult battles and persevering in the face of much greater adversity. And Mattie so often does so with a huge grin on his face!It really puts things into perspective.I've been thinking a lot about the conversation Vicki and I had in the clinic. She had very kind words of encouragement and stated that she admired my courage. While I appreciated that greatly I was sort of thrown off and unable to reply with exactly what I was thinking at the moment, which was something along the lines of "what!?!?, my 'courage is minuscule, un-measurable compared to what you and Peter have faced and endured." Importantly, too, I think there is a fundamental difference in the fact that I chose to put myself into my position whereas no one ever willingly chooses a cancer diagnosis; particularly for a child. I know the circumstances can't even be compared and I don't know if I am stating clearly what is in my heart but basically I respect and admire you both and I appreciate the kind words but I feel they were utterly undeserved given the present situation. I do,though, think you should know that I find so much inspiration from your family. I keep coming back to this conversation and replaying it in my head and I wish I had been able to express myself more fluently in the moment (or now for that matter. . .) but I hope you understand the sentiment that I am in awe at the strength and determination you have shown this year in being such a powerful advocate for Mattie. I can only hope one day to be such an amazing caregiver.I am really glad I was able to run into Vicki and Mattie in the clinic last week and I was particularly impressed with Mattie's determination to kick Brandon's butt in boat racing (as well as stand up in the process!). I think its a powerful testament to Mattie's character that even as the bone bugs were growing (unknown to the rest of us) he pushed forward with physical therapy and made major strides and accomplishments.I wish I was better able to express all the feelings I have had these last few days when reading the blog, but in place of that I am attaching a poem that more eloquently captures some of my thoughts.When I was a senior in high school my dad was very sick and hospitalized for many months (which is actually why I think I chose to pursue nursing). During that time a family friend gave me this poem and it really seemed to resonate with me at that moment and I reread it often still to this day.I am leaving in the morning to head back to Ethiopia but I didn't want to get on the plane without you knowing that I am praying daily for you, for Mattie, and for peace during this time. You are not alone.Thank you for letting all the rest of us join in this journey."
The last message is from Mattie's occupational therapist. Kathie worked with Mattie for two and a half years, and helped me through some very challenging periods. Kathie introduced me to the wonderful work of occupational therapists and I was looking forward to Kathie working with Mattie again to help him rehabilitate. If anyone could do it, it would be Kathie. I am deeply sorry Mattie and Kathie won't have this time together. Kathie wrote, "My heart is so heavy as I try to process Mattie's prognosis. I am so terribly sorry about what you and Mattie have to bear. Your very courageous journey with him over the past year leaves me no doubt that you will find the very best ways of caring for and loving Mattie through his remaining time on this earth. Your parenting skills are astonishing. Thank you so much for sharing your journey with us via the blog. I have learned much from you and Mattie that I will carry with me forever. My memories of Mattie when I saw him for occupational therapy in his younger years are so clear and so fond. He is the only child whose framed picture has held a space on my desk since his discharge. Each time, upon his arrival at therapy, he gave me a gift of an acorn or a dried oak leaf, or occasionally a dandelion. One of my favorite memories is of the day when he was jumping on the large therapy ball while I held his hands and supported the ball against the wall. I had nothing to do but hold his hands and gaze at him, and I said to him, "Mattie, are you the cutest child in your class?" To which he answered simply and without question, "Yes." Of course. May peace, love, and more courage be with you over the next while as you face your unbearable loss."
No comments:
Post a Comment