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."
1 comment:
I am one of your former students from GW (Alexandria campus), Sherry Barker. I have never responded before because your time is so precious with Mattie that I didn't want to take it up, and I also never knew what to say. What can one say in a situation like this. Please know that I have been following your blog, and praying for you all since the start of this horribly difficult journey. I can say that from it I have learned that Mattie has two of the most incredible loving parents a child could have. You all amaze me with your strength. I have gone through some difficult times in the past few years, but it simply can't compare to what you are going through. Reading your blog always put things in perspective for me and helped me realize how blessed I am and how easy I have it. I even make my husband read it on occasion. Sometimes I found it almost too much to bear as I listened to the trials Mattie and you all are going through. I would sit at my computer and cry. My 5 year-old daughter says prayers for Mattie too. I'm not sure how I'm going to explain the next steps in this process to her. When I read the blog on August 5th I broke into tears, and my heart ached. That night I snuggled my daughter in my bed as I offered thanksgiving prayers for her and cried myself to sleep.I don't even know Mattie, but he has changed my life also. I have always treasured my children and try not to take anything for granted, but I am even more keenly aware of my responsibility and desire to do my best for my family.
I know this is a very lame attempt to ease your pain (I'm sorry for even trying), I feel everyone has a purpose to fulfill on this earth. God has a plan for them. Teachers like yourself touch the lives of hundrends of people,maybe Mattie's purpose was to touch the lives of thousands of people (probably even more than you will ever know)growing those who worked with him, providing reality checks for some of us, and providing joy, love and comfort to his mom and dad.
I met a lady who knows you all last week who also has a son (4 year-old I believe) who also has osteosarcoma her name is Melanie. I couldn't hardly believe it. I hope to keep in contact with her. Your blog has given me some ideas that might be helpful for her.
During trying times I have often found myself saying "I don't understand.....I don't understand..." Maybe you have too. During one of the most difficult times I opened a devotional on our end table and the first thing that I saw was Proberbs 3:5-6. Trust in the Lord with all your heart, and lean not unto your own understanding; In all your ways acknowledge Him and He shall direct your paths. The word understanding jumped off of the page at me. We fragile human beings want so badly to understand, to make sense of everything, but we were not meant to. Faith, Hope, Love. Cling to these.
Thank you for trusting me with your anger, your fear, your joy and mostly for sharing your precious Mattie with me. The beautiful smiling boy that flashes by each time I visit the blog makes me smile. The picture of him sleeping the other day made me cry, as he looked like an angel....such beauty and peace on his face.
I am rambling on, and I am sorry for that. Please know that I continue to pray for you all.
Sherry
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