The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
August 29, 2009
Tonight's Mattie creation is made out of model magic. Mattie designed and colored a model magic birthday cake for Peter, since we celebrated his birthday last year in the PICU.
Quote of the day: "Whoever survives a test, whatever it may be, must tell the story. That is his duty." ~ Elie Wiesel
Charlie sent me the above quote and it caught my attention.
Peter and I have been asked to face life's worst test and challenge this year, having a child diagnosed with cancer. That seemed like a nightmare of a test to prepare for, but I assure you that was nothing in comparison to the test we have been asked to study for now. The test of facing an unnatural death, the death of a child, my child! There are a ton of how to guides for parents to follow, but I doubt anyone would dare to take on a how to guide for saying good-bye to your child. Needless to say, I agree with this quote, that when faced with such a life altering threat and test, it must be written about. This blog captures the story of Mattie's life and his demise. However, it is my hope that through my writings that Mattie's spirit, vivaciousness, intelligence, wit, and amazing humor is what you remember. I feel it is my duty to keep writing so that no one forgets Mattie, his heroic battle, and the evils of Osteosarcoma. In fact, one of my colleagues asked me to consider writing the blog through our grieving process as well, and I am thinking about that.
Mattie had a very difficult time falling asleep last night. In fact, Peter and I did not get to bed until 4am. Mattie continues to experience more pain and nausea today. In addition, having intense pain just exacerbates his anxiety. So Peter and I felt like we were putting out one fire after another today! Mattie was so wiped out from the pain and being pumped with pain medication, that he slept until 3pm today. However, even when he awoke, he did not want to leave bed. He actually stayed in bed until 7pm. It was only then that we coaxed him out of bed and now he is sitting on the couch in our living room. However, what you need to realize is even though Mattie is in bed, he doesn't want to be left alone. Peter and I try to take turns being captured in one room and place for hours, but there are times, being so quarantined is virtually impossible. In a way, being by Mattie's side 24/7 requires a level of selflessness that I am having trouble even describing. But keep in mind this 24/7 ritual, has been going on now for over a year, and the fact that Peter and I haven't cracked up yet really is a testament to the power of love and the overwhelming passion to do the right thing for Mattie.
As I was talking to Ann last night, one of the questions that I posed to her was, am I still a mom once Mattie dies? After all, don't you need a child to care for in order to maintain this title? Yes I will always be Mattie's mom forever, but really I won't be a mom. This is a role that has identified me for seven years, a role that enabled me to interact with a school community and other moms. In a way, if I am no longer a mom, I no longer am a part of the communities I have come to embrace over the past several years. So to me, it is a loss on a very profound level. I told Ann, that prior to Mattie, I dressed differently, I am sure all moms did. But once you have children, you realize you need a wardrobe that is easily washable. Once I lose Mattie, how will I dress? What will I do? I have no answers to these questions, but Ann's response remains with me today. She assured me that I will always be a mom, because raising Mattie has impacted how I see, view, and experience the world. As a mom you develop a certain skill set, that will never leave you. I continue to reflect on Ann's comments, and her confidence she has in me as a mother.
Karen and my parents went out to lunch together today, and when they came back, they brought us lunch. I ate first with my mom and Karen out on the deck and we had a chance to talk about one of my main fears, how to live life without a raising a child. However, in my house right now, all meaningful conversations have to happen within minutes, because Mattie is always pulling on one of us to come back so he can see us and we can physically be in his presence. So food always goes down too quickly and you always feel rushed.
Later this afternoon, Peter drove Karen to the train station. She is headed back to NYC today, after spending four days with us. Karen tried to help us, but it is unfortunate that Mattie isn't open to others, in order for Peter and I to get some sort of break. I am sure it is frustrating for those who love us to feel helpless while in our presence, but we did appreciate Karen's company and value her support.
My main excuse for getting out of the house tonight was to do the laundry in our complex. It is a sad commentary I think when doing laundry is the highlight of my day. But there you have it. While walking back and forth doing this mindless task, I found myself reflecting on the importance of emotional bonds and connections between an ill person and his/her caregiver. Modern medicine is SO focused on numbers, test results, and data. Treatment must be quantifiable, in order to measure its effectiveness. I am sure all of this is driven to some extent, not only by the profession, but by insurance companies. None the less, what about the medicinal power of love and deep emotional respect and compassion? These are vital factors that are NEVER talked about in medicine much less assessed, most likely because it is hard to quantify such intangible concepts, much less figure out how these factors impact someone's health and recovery. I get that really! But this year I have seen and experienced the power of these intangible concepts, and frankly I think the medical profession is missing a good 90% of patient care by NOT focusing on the emotional bonds and connections we make with our loved ones. Why do you think Mattie won't let Peter and I leave his side? It isn't about control, it is about comfort, love, and security. Certainly if you feel all these emotional things, then your chances of recovering and being motivated to take care of yourself are much higher. This week alone I had the rare opportunity to spend almost everyday with Ann's father, Sully, in his assisted living facility. I went to visit Sully because I knew he wasn't feeling well, and would also be missing Ann's presence. However, something truly amazing happened within a seven day period of time. Sully's health began to rapidly decline with each day Ann was gone so much so that it was quite visible that his condition was getting worse. Yes Sully had myself and Tanja (a good friend of Ann's) visiting him each day, and though we thought we were helping to manage the situation, I wasn't factoring in an important part of the equation. The medicinal properties of Ann herself. Upon Ann's return I realized something very profound. After Sully spent two days with her, and she sat by his side and nurtured him, fed him, and talked with him, he started to pull out of his decline. I am not sure I would have believed it, if I did not see it myself, but I tell you this story because none of us should ever under estimate the power of love and the importance of emotional connections on our physical health. The psychological world most definitely influences the physical world and symptoms, and I saw it dramatically for myself with Sully. Sure Tanja and myself could attempt to feed Sully and talk with him, as we did, but the bond that Ann has with her father enabled her to know just what techniques and strategies work for him. In addition, I could see how he responded to her voice and the impact this had on his ability to focus, concentrate, and heal. So I guess what I am saying is for all family caregivers out there who doubt for a second what you are doing, stop and reflect on the profound impact you are making to the person you are caring for. This person relies on you, loves you, needs you, and trusts you implicitly to make the right and humane decisions for treatment. I guess seeing Sully perk up this week inspired and renewed my passion for the importance of my role as a caregiver for Mattie and I wanted to share this with you.
We would like to thank the Putnam family for another wonderful dinner. Grace, thank you for the chocolate covered strawberries, they are very special, as is the support you continue to give our family.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I don't know why the end has to be so hard. Mattie is very anxious and I think he tries to control whatever he can as a result. Who is around him, what they can do (talk, eat), what and how to play or interact. This makes life almost impossible as you are someone who naturally connects with others, who needs to be out and about. Mattie's circle keeps getting smaller and smaller and it becomes almost impossible to support him. I wish I could reach out across the divide and send you a hug, endurance, even better, a miracle but all I can do right now is think of you (and I do) and pray for you all. As for your reaction to Mattie's condition, although you might be one who normally cries, the mother and caretaker in you knows that is not the reaction that will help Mattie and so you don't cry and don't vocalize how you feel. I wish there was a way to give you the freedom to shed those tears, I hear your cries in the blog and my heart cries in sympathy. I hope today is a better day."
The second message is from a fellow SSSAS parent who I met while Mattie was in kindergarten. Olivia's message moved me deeply and I wanted to share it with you. Thank you Olivia for taking the time to reflect and write to me today. Olivia wrote, "This morning, as I have for hundreds of mornings this past year, I began my day with the personal, prayerful ritual of reading your daily blog. As many have shared, reading your blog about Mattie has become part of my daily routine – always recognizing how you have said that you will never accept this as ‘normal’ even after hundreds of days of living this. I hesitate to write, as someone so on the edge of your world I feel unworthy to share my thoughts with you – what could I possibly offer that would provide comfort, warmth, healing, solidarity? How might my words be awkward and offend unintentionally? But, sometimes, something inside pulls us, someone greater than we are calls us . . . to be open and honest, no matter how it is perceived. So I share this insight with you.
In my mind’s eye, reading your blog has become like the ritual of daily mass for me. As I click on the http://www.mattiebear.blogspot/ each morning, I take a breath, unsure of what I will read that the last day, the last night has brought you. The opening quote you post, is like the first reading. It prepares me for where you have journeyed in the past 24 hours – what wisdom has come in your path. As you write your entry about the activities and people of your day - the GU nurses, the surgeons, the therapists, the patient advocates, the visitors, the school friends, the former students, the colleagues, the family members – I picture these people representing the walks of life, the people of all our worlds, who come into our lives and have a gift to share. The face of God in our lives. People around the world, through your blog, are with you now . . . and have been shared with me now. The world has been made smaller for me. As they share their support, advice, kindnesses with you . . . it’s like hearing stories of the holy, everyday people of our early church – when people needed people more and appreciated the value of a few good words, a cup of tea, a back rub, a lunchtime visit, a letter or phone call – these weren’t huge deeds they did involving lots of money. It was the gift of time and love they gave in the name of community and faith.
Then, as you share your own reactions and insights about these people and how they have treated Mattie or how Mattie’s health and feelings are that day . . . I feel as if I am hearing the Gospel. But, rather than the author being one of the four traditional Gospel writers, each morning I hear the voice of a woman. The voice of a mother. And, while I hesitate to make this too heavy in symbolism, this is what I am reminded of: Mary and Jesus. Mother and Son. A single person, a boy, a man, who was born unto this earth to die. A mother who has to endure the pain of seeing her son suffer, for what earthly reason I cannot fathom. . . though I have been witness to the unbounded love that has taken root in others – THOUSANDS who hear your words, THOUSANDS who know Mattie’s story - because of his tremendous life and, so sadly, his tremendous suffering. I have heard in your blog entries, all the Gospel stories – truly. I have read of the trials and lessons of sacrifice, fortitude, using one’s gifts, forgiveness, humility, understanding, cooperation, prayer, suffering, arrogance, family, rejection of material goods, simplicity, spousal love, parental love, neighborly love. And, I know I will one day read the passion story. I try to remember that when we are ‘reborn’ into this Christian life through our baptismal promise, we accept that our story is a story of life and death and resurrection – they are all part of God’s promise for us. But, somehow, for all beauty of that resurrection story, I can’t seem to see its beauty yet for a beautiful seven-year old boy named Mattie. So, I continue to pray.
When I read of you and Peter changing Mattie’s central line dressing and moving around wheelchairs, and looking for prescriptions and changing wet bed sheets, I read of the love of parents – of true and humble servants. You are such witnesses to God’s call to all of us to serve – it was His last will and testament. “So when he had washed their feet and put his garments back on and reclined at the table again, he said to them, “Do you realize what I have done for you? You call me ‘teacher’ and ‘master,’ and rightly so, for indeed I am. If I therefore, the master and teacher, have washed your feet, you ought to wash one another’s feet. I have given you a model, so that as I have done for you, you should also do” (John 13:12-15.). When you wonder what more you could have done for Mattie, I think that you have done what you were called to do when God gave him to you – to love and to serve him.
When you talk of the families who have brought you a warm lunch or a special dinner, I think of our gathering around the communion table to be fed. Eucharist is a very personal sacrament, a mystery to me. Yet, in its pure and simple form before consecration it is bread and wine. It is food. What it becomes in my acceptance of it, in my reception, is to me the sacrament of community. Sharing in one bread, one body. The food that you write others have given to you, daily this year, is a witness to me of the sustenance of friendship and community that we all need to nourish us and to heal us, physically and spiritually.
You wondered what the plan was for you, for this suffering of Mattie’s and I can’t imagine what it is that a little boy would be born to suffer. And, that has made me pray over the story of our Christianity. I keep meditating over the words of God’s love for us and how it often is intertwined with sacrifice: Those He predestined, He likewise called; those He called, He likewise justified; those He justified, He in turn glorified. If God is for us, who can be against us? He did not spare his only son, but handed him over for the sake of us all. It’s too big for me to understand. So, I continue to pray.
I wish I had healing power, Vicki and Peter. I wish I could change this nightmare of suffering and loss. I am sorry that I only have my friendship and prayers to offer. Please know that Mattie, that you both, that this blog which has been like scripture for me, leading me to love more, to believe more, to forgive more, to accept more, to slow down more, to reach out more . . . have changed my life. That is a resurrection story – maybe not the resurrection story – but resurrection story for me, perhaps. Through Mattie’s life and suffering, new life has been born in me. I make it my promise to you to walk in honor of and witness to the life-giving love you and Mattie have shared.
May God bless Mattie and you and Peter with his grace, peace and comfort all the days of your lives."
Mattie had a hard time falling asleep, and did not land up going to bed until after 3am. Needless to say, he did not get up until 2pm today. Mattie was resting peacefully, and neither one of us wanted to disturb him. Peter and I took turns lying in bed with Mattie, because Mattie made it clear that our presence was needed.
We would like to thank the Kelliher family for a lovely dinner and cheesecakes. We truly appreciate your support. After dinner, I went to visit Ann, who was helping her parents at their assisted living facility. We hadn't seen each other in over a week, and we had a lot to catch up on. Visiting Ann's parents this week, and Ann tonight, have enabled me to leave the house and to actually talk to an adult. This has actually been very therapeutic this week, because I want you to understand that our daily existence at home is bleak. Mattie needs us by his side constantly, he has many anxieties, that are only managed by our immediate presence. In addition, Mattie doesn't like to hear people talking, so there is a lot of intentional silence in our house, and after a full day of this, it gets to me. Add on top of the fact that we are exhausted physically and mentally, and that Mattie is denying us the ability to eat meals, and this produces a less than bearable existence. I feel particularly fortunate to have Ann in my life, who has been there every step of the way in this journey with Peter and I, and helps me normalize my reactions to Mattie's terminal diagnosis. I feel particularly confused by my reaction to Mattie's illness, because normally I am the type of person who cries over a hallmark commercial. But finding out about Mattie's terminal status, has left me numb and in shock, and I though I hear and experience sad things around me, I remain strong and together. Perhaps this is a mechanism I have adopted in order to survive this nightmare right now, so that I can mobilize forces and energy to help Mattie manage pain. None the less, when ever I experience a change in how I think or process things, I do take notice.
August 27, 2009
Tonight's Mattie creation features a lovely piece of pottery Mattie made for me in the Lombardi Clinic. He actually used a pottery wheel and spun this vase, and then glazed it himself with his favorite color, red!
Quote of the day: "Life is eternal, and love is immortal,and death is only a horizon;and a horizon is nothing save the limit of our sight." ~ Rossiter Worthington Raymond
I want to thank many of you for writing to me today and letting me know we were in your thoughts and prayers, as Mattie headed for a CT scan. In fact, we also had several nurses and other Georgetown Hospital staff write to us today as well, lending their good thoughts, concerns, and prayers. It saddens me that it took such a tragedy for me to see the amazing community I am surrounded by. Today was the perfect example of community. I have felt this way for a long time about Georgetown, but after today, I can see why the hospital has become our second home. Peter and I practically know someone on each floor of the hospital. When we brought Mattie to clinic, Jenny, Jessie, and Linda greeted Mattie. Mattie was actually some what animated and played with Jenny and Jessie. They were showing him some wonderful seashells they collected, including the sand. Mattie was intrigued by this, which was lovely to see, since Mattie spent many happy days digging in his own sand box at home and the huge sandbox at RCC (his preschool). While Peter stayed with Mattie in clinic, Karen and I went to the admissions office to register Mattie for his day procedure. I am so accustomed to registering Mattie, that I know most of the staff and the entire routine. Karen was getting a kick out of me, and my level of directiveness.
Before we headed to the CT department, Tamra stopped by clinic. Tamra is a fellow SSSAS mom and new found friend. Tamra and her family have been incredibly supportive of us this year, and we are so grateful that Tamra prepared us a beautiful lunch. She presented it in a lovely picnic basket, with linens, plates, and all sorts of goodies. Thank you Tamra, for making me feel special! Tamra took my parents out to lunch today, which was very kind of her, since scan days are HIGHLY stressful! Thank you Tamra for all that you do.
When we wheeled Mattie down for his CT scan, Linda was accompanying us and helping us every step of the way. We also met up with with Jey, our favorite CT tech, and Mattie's "big brother." The news of Mattie's terminal status has hit Jey hard, but despite how he feels, he never misses the opportunity to see Mattie and support us. Jey is one of the special people who works at Georgetown, who makes us feel like we are a valued part of the community. In addition, Debbi, our sedation nurse angel, was on the scene. When Debbi is present things ALWAYS go smoothly. Debbi has been by my side since the beginning of this ordeal, she is not only a phenomenal nurse, but a compassionate and understanding person. We would be lost without her. The CT scan process went smoothly, and I am thrilled we elected to sedate Mattie. He could never have made it through the process without it. He operates in a highly anxious state now, and to me Mattie has nothing more to prove. If doing a test under sedation is what he needs, then so be it. Even if the test is only five minutes!
After the CT scan was over, Debbi and Dr. Eric (the wonderful intensivist who helped us throughout the cyberknife ordeal), wheeled Mattie back up to the PICU. Mattie recovered there. However, we asked that Mattie be kept under sedation for a longer period of time, so we could give him a bath, change his central line dressing, take off old Fentanyl pain patches, clip his nails, and give him a suppository for constipation. Debbi and Dr. Eric were very kind and understanding, and helped me every step of the way. Debbi literally helped me change Mattie and bathe him. Mattie was surrounded by a lot of love today in the PICU recovery room, and what I began to notice was I was an integral part of the team. Debbi and Dr. Eric allowed me to change Mattie's dressing myself and to clip his nails. In fact, Dr. Eric said that clipping nails is not allowed in the PICU. It is actually considered surgery. So today, I became a surgeon by PICU standards! Debbi approved me to do this, because she told everyone I most likely have been doing this to Mattie since he was a baby! Dr. Synder also came into the recovery area while I was changing Mattie's central line dressing, and was impressed how I did this. Again, remember I was trained by the best nurses around, and as Debbi said, of course I know what I am doing, I have been doing it for over a year! Despite the fact that Mattie is dying, and my world is falling apart, I find that I am being surrounded by incredibly competent and loving individuals who can't do enough for me. We want to thank Katie and Kathleen (two of our wonderful HEM/ONC nurses) for supplying us with bath items and coming to visit us in clinic! So today I realized that Peter and I paid our dues and then some this year, but in the midst of this crisis we are really embraced into the Georgetown Hospital family. That means a great deal to me, and this is a feeling I will never forget.
Mattie was transferred back down to the Lombardi Clinic, so he could rest, and allow the sedation effects to wear off. While waiting, Dr. Synder met with Peter and I. She let us know that the tumors were stable, so apparently the Cyberknife was somewhat effective. However, the tumor in the pleural cavity grew slightly and another tumor popped up in the lungs. There doesn't appear to be fluid build up in the lungs at the moment, which is good. We spoke to Dr. Synder about changes in Mattie's anti-emetics. Apparently there are different receptors on our cells that can control vomiting. Right now Zofran and Kytril, Mattie's current anti-emetics, only target only one type of these receptors. So we are going to try to add another anti-emetic that targets a different receptor, the only issue is this medication is oral. A big problem. So we are trying to work this out. In addition, we learned that Mattie is very constipated today, and also has an accumulation of barium (which can actually act like cement in the intestines) in his system, from when he took the CT scan on August 5th with oral contrast. So we are giving Mattie suppositories so he doesn't get a bowel obstruction. None the less, he is scheduled to go back to the hospital on Tuesday for more sedation, so he can get an enema to hopefully flush out his system. It just never ends!
We spoke with Dr. Synder about two chemotherapies. We are really unable to start oral VP-16 until Mattie's nausea is under control. We would like to try to start that next week, and in addition, we would like to add Avastin to the mix. As you may recall, when Mattie's pathology report came back, his cells had an inordinate number of Vascular endothelial growth factor (VEGF) receptors. Avastin (bevacizumab) is the first U.S. Food and Drug Administration (FDA) approved therapy designed to inhibit angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor. Avastin has been shown to be effective with tumors having VEGF receptors. So we are still pursuing options to help manage Mattie's pain.
We spent most of the day at the hospital and did not get home until 5pm. Once Mattie was home, he was exhausted and spent a chuck of the rest of the day watching Sponge Bob videos. While he was in good hands with Peter, my parents, and Karen, I headed to see Ann's parents. Ann's dad is quite ill, and I wanted to try to help out this evening before Ann arrived home. I brought dinner for Mary, did her nails, and also brought Mattie's DVD player with me so Mary could see the 50th anniversary video that Ann made for her. I felt all these things would be a much needed distraction from her daily routine. Before I left for the evening, Mary and I both agreed on something, we don't understand God's plan for either her son or Mattie. She then said, no matter what happens to her, and even when she eventually dies, she will always be thinking of me and saying a prayer for me. I told Ann tonight that I am not sure when I received a more touching a loving comment.
When I arrived home, Mattie was still sitting on the couch and watching videos. Karen and I had dinner together, and then I switched with Peter, and Karen sat with him while he ate dinner. Karen served and cleaned up dinner plates, which was very helpful and one less thing for me to worry about. While I sat with Mattie, he had me watching a science channel show about pest control. I had to see one house with over 100 rats! If this isn't love, I don't know what it is!
It is 12:30am, and Mattie is still wide awake, and vomiting. Peter is exhausted, and I am determined to get him out of the house tomorrow. He refuses to leave Mattie's side, and Mattie refuses to part with Peter either. But Peter can't keep giving without taking a break, so that is one of my missions for Friday. Wish me luck on that!
We want to thank the Murphy family for a wonderful home cooked dinner. Thank you Elizabeth for the video too! We appreciate your continued support of my family. We also want to thank the Ferris family for the wonderful brownies you delivered to us today! Junko and Tad, you continue to spoil us. Marisa, one of Mattie's helpers this summer, delivered a gift for Mattie tonight, but he hasn't opened it yet. But I appreciate having it on hand for one of our many upcoming difficult moments!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I grieve to see the little boy in the pictures at the beginning of the blog versus the recent pictures of Mattie; as you said, the outside looks the same but the spirit is definitely waning. I can only imagine how hard it is for you and Peter right now to have to be within arms' reach of Mattie at all times; no matter how much we love our children, we need time and space to recoup our "balance" and you haven't had that at all this year. Lesley's email describes you as a woman warrior and that is so true. That is exactly what you have been this year; on the warpath to finding a solution to Mattie's cancer and now that the time is approaching, a warrior in defense of a pain free, peaceful passing. I realized we all tell you not to doubt or question yourself; that's impossible, but all of us who regularly read the blog know your decisions are sound, thoughtful and made from love tempered with acquired knowledge. So when you question, as you will, know that we appreciate what brought you to where you are. I will pray today for the best possible news from the scan. I leave you in the arms of the world creator with prayers that he will hold Mattie and you gently."
August 26, 2009
My parents gave Mattie a huge tarantula today, and of course Mattie couldn't wait to shock me with it. This thing is almost bigger than I am, and it actually moves on a remote control. In addition, Peter and Mattie built a LARGER than life cockroach tonight, and of course guess who got to be stunned by it?! Me naturally.
August 25, 2009
The Mattie creation that I am posting tonight was created at the Lombardi Clinic for me. Clearly you can imagine when I received this, I was very touched by Mattie's illustration of love. This little canvas means a lot to me, and sits in our dining room.
This is the third day in a row that Mattie did not need oxygen. That is wonderful, but he is very edgy, anxious, and continues to vomit whatever he attempts to consume. Our major problem is that he does not like having his medications pushed through his central line either. He claims that he can taste them as they are being pushed and they make him nauseous. Especially the saline flushes which we must use before and after the administration of all central line medications. I wrote to Dr. Synder, Mattie's oncologist, today and told her of my concern for the oral administration of VP-16. I honestly can't imagine Mattie taking this, but I am trying to keep an open mind. None the less, I have to face facts. Mattie continues to vomit, and can't even hold down water. If it weren't for his 16 hour infusions of TPN, an IV supplement, I am not sure how his body would survive! I continued to grow more concerned about Mattie's upcoming CT scan on Thursday. He was scheduled to go through the procedure without sedation, but yesterday I e-mailed Linda and told her I don't think Mattie can make it without sedation. Mattie is way too anxious, so anxious, that he doesn't like to be touched even by Peter and I. I am unable to remove the old Fentanyl pain patches from his back, or even change his central line dressing. So Debbi (our sedation angel) is going to sedate Mattie on Thursday for the CT scan, and we will also remove all patches and change his dressing then. Dr. Synder feels that the CT scan will give us a better idea regarding Mattie's stomach pains, and a chance to see if the Cyberknife had any impact on the large 2cm tumor in the pleural cavity, behind the rib cage.
August 24, 2009
Mattie spent a great deal of the morning in severe pain. His Fentanyl pain patches were losing their effectiveness, and needed to be replaced today. What this showed us was that Mattie is still in intense pain, and the IV morphine alone can not manage the pain alone. So we immediately changed the patches, and thankfully within a couple of hours, the screaming and crying began to stop. It was heart wrenching to listen to this. After a few hours of this, you either want to pull your hair out, or somehow make this all disappear from your consciousness. Mattie did not come downstairs today until 1pm. He just did not feel like leaving his bed.
August 23, 2009
Quote of the day: "Death ends a life, but not a relationship." ~ Morrie Schwartz, from Tuesdays with Morrie by Mitch Albom
Mattie has been having VERY restless nights of sleep. Not unlike the Fall of 2008, after his surgeries when he experienced sleep talking and night terrors (characterized by extreme terror and a temporary inability to regain full consciousness. The subject wakes abruptly from slow-wave sleep, with waking usually accompanied by gasping, moaning, or screaming. It is often impossible to awaken the person fully, and after the episode the subject normally settles back to sleep without waking. A night terror can rarely be recalled by the subject.). Mattie was screaming at 4am, however, he really wasn't conscious and did not respond to my questioning. None the less, hearing him scream, "go away, do not touch me," and then "tell her to leave the room" was rather frightening. The same episode happened at 6am, however, this time, I was able to arouse Mattie and question him more. This time he opened his eyes, and basically said to me he thought that he was in the hospital, and he was telling medical personnel to leave the room. Not that this explanation satisfied me, but it was certainly better than where my mind was going, in that I thought he was seeing an angel, who was preparing Mattie for his eventual journey. Peter and I are trying to come to terms with what is next for Mattie after his physical life on this earth, and based on the level and severity of Mattie illness and suffering, I guess I expect the heavens to just open up and at some point I am thinking I will see angels and saints sitting with me in Mattie's room telling us it is okay to let him go. No I haven't lost my mind, I realize that is most likely not going to happen, or at least I won't be able to see it with my mortal lens, but if my son is going to be taken away from me, then I am hoping heaven will be prepared to accept this special gift.
Mattie woke up and was not in a good mood today. It took him a while to pull out of it. But one thing different about today was Mattie did NOT need oxygen support. I have no idea why, but we will see what tomorrow holds. He is still weak, and vomiting a great deal. This is the third day in a row where he was unable to ride Speedy Red, and as Monday comes around I am determined to get him outside and in the fresh air. Something he refuses to do!
This afternoon, we had a lovely visit with Rev. Jim Greenfield. Peter and I were able to talk to Jim, while my parents played with Mattie inside the house. I am so happy that Jim agreed to work with us and officiate a funeral when the time is right. What I love about Jim is he is real, very human, and down to earth. He certainly is well qualified as a priest, but the reason he is a wonderful match for Peter and I is that he doesn't propose to have all the answers, and he is willing to explore topics with us. It is unthinkable in my mind, that Jim gave us pre-cana (which in essence is like a course or consultation Catholic couples must undergo before they can be married in a Catholic church) and baptized Mattie, and now just seven years later, we are talking about planning for Mattie's funeral. It is not only unfathomable but deeply troubling in my mind and heart. We discussed many things with Jim, and I started off the conversation with Jim about my doubts for God's love for us, and why I am having a very difficult time understanding his plan for Mattie and for us. Jim could have said our role is not to question God, but he did not say that, instead, he normalized my fears, doubts, and anger. Not only was that welcomed, but that put me at ease. Though knowing Jim as a person and the skills he comes to the table with, none of this is surprising. We talked about where to have the funeral, the Catholic church's view of cremation, and a host of other things. What I appreciated was that Jim helped us see this is a process, and we do not need to have all the answers on how we want to celebrate Mattie's life right away. That we should let some things unfold. This was very helpful and insightful, because I can feel we are dealing with the trauma of Mattie's death, and I for one am not thinking all that clearly to make such long term decisions.
We did discuss with Jim what we were hoping Mattie's funeral would look like, and I also told him of my great disappointment in our role as parents. Our role was to protect Mattie, and yet neither one of us was able to do this against the evil forces of Osteosarcoma. I shared with Jim the fact that I had this same conversation with Ann. I told him that Ann's response was, if I couldn't stop the disease and make Mattie better, than no one could. Jim liked that response as much as I did. But this gets back to what I was talking about last night, that there are forces in this world much bigger and more powerful than us, and accepting this is not only humbling, but at times scary. It also makes you see just how fragile life is, and as humans it is hard to live with this lack of control. I feel as if I see the world much clearer now than ever before, and what I see, I am not happy with. I long for the days of innocence and naivete. I see sadness, pain, and suffering all around me, and I have been an eye witness to terrible suffering endured by Mattie over this year. So I asked Jim how do you recover from this, how do you move on? Again, there is NO simple answer, and as Jim said, do I really want to move on and forget? We live in a world where we are supposed to just deal with things, and then package them up somewhere, forget them, and move on. Well clearly that will never happen with our love for Mattie, but yet how to reconcile that love, and still remain living after he is gone is hard to understand. Jim will remain connected with us through this journey, and I can't think of a better spiritual companion to have guide us.
Peter and I also discussed our struggle on how to prepare Mattie for this journey. Again there was no simple answer revealed, because there is NO right or wrong answer. But Peter and I were able to at least agree that helping Mattie come to terms with his death should be a staged like process. That telling him of his prognosis right now, would do more harm that good. So as he declines we will help him to understand what is happening with his body and try to discuss his fears along the way. I keep reflecting on what Jim said, which is don't expect to have all the answers now, the answers will evolve and happen, and in a way this helps take away some of the immense stress we are placing on ourselves to do the right thing.
After we said our good-byes to Jim, I left the house to visit Mary and Sully, Ann's parents. I couldn't spend as much time with them today as yesterday, but they were both happily surprised to see me. Tanja (a fellow SSSAS parent and a friend) brought Mary and Sully a lovely dinner, and I got to sit with them while they ate. As I sat with Mary, we always have a lot to talk about. We looked at pictures, talked about her family, and then of course talked about our boys (her son who died from cancer, and my Mattie). Before I left the assisted living facility tonight, Mary said to me that I missed my calling. That I should have been a nurse. I asked her why she felt this way. Her response was because she viewed me as a very compassionate person. I certainly do not do what I do for Mary and Sully, because I am looking for such positive feedback, but none the less, I was deeply moved by that compliment. I would be lost without Mattie's nurses this year, and have great respect for their work and skills. So this compliment brought a smile to my face, and the nurses at Georgetown should be proud, because if I am a good honorary nurse, it is because I had the best role models to follow.
When I arrived home, Peter and I ate dinner in stages. I ate first, and then sat with Mattie and watched a movie while Peter ate. This seems like the only way to bring peace into our lives at the moment, since food is such a sore subject for Mattie. We want to thank the Peterson family for a wonderful New England dinner. We thoroughly enjoyed it and Karen thank you for the lovely card with Caroline on the front, and for the tasty cherry pie. You always spoil us with a great pie!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "As you struggle to come to grips with Mattie's impending departure, I hold you in my heart and wish you continuing strength. I am sure you can come up with an appropriate way to celebrate Mattie's life, with the help of Reverend Greenfield. In Judaism our "remembering" is done after the funeral, so that might be an option for you to consider. I am glad to see that Mattie has opened his "circle" to let your parents in, so they may have special time with him and you and Peter can get a much needed break. Bless you for going to visit Ann's parents while she is away. As always your visits were filled with thoughtful, kind actions I'm sure they treasure. I know they miss her a lot and likely feel very isolated without her daily visits. As always you and yours are in my thoughts and prayers daily."
The second message is from one of Mattie's outstanding HEM/ONC nurses at Georgetown. You may recall that Kathleen is the nurse who created a clay plaque for the Lombardi Clinic that reads, "I wish for a Mattie Miracle." In addition, Kathleen trained Peter and I about a week ago on how to administer all of Mattie's medicines through his central line. She did a great job, because these complex tasks are becoming a routine for us now. Kathleen wrote, "I am so glad that I was able to help you all last Sunday. I hope the info I typed up helped you figure out everything needed with administering the anti-emetics, antibiotics, TPN and Morphine for Mattie. With all you have learned this year, you definitely have earned an honorary nursing degree! Thank you so much for your e-mail this morning. I quickly checked my e-mail before heading into D.C. for my CPN (certified pediatric nurse) exam. Your simple words of thanks and praise gave me the boost I needed before my exam, easing my worries and nerves. I hope and wish that you know and realize just how much you have touched all of our lives, mine included. We should be giving you words of encouragement and praise, not the other way around! We should be the ones telling you thank you. So Vicki, now it's my turn. I just want to say thank you for being you! You are an amazing woman, one that has taught me more about love and relationships than I thought possible. You have shown me light of what I wish to have one day. A steady and rock solid relationship with the man she loves with all her heart- her best friend and confidant. A woman who is willing to do everything and anything for her child. The most amazing advocate. As well as a gentle, loving, nurturing mother who has taught her child what unconditional love is. You truly are amazing, and an inspiration. Mattie is so lucky to have you and Peter as parents. And although his story may end differently than we all hoped and prayed, I have peace of mind knowing that his life here on earth has been a happy one filled with love, support and encouragement. He will always be remembered, as will you and Peter. As always, you know that you, Peter, and my little monkey boy are in my thoughts and prayers."