Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: 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!

A Remembrance Video of Mattie

August 29, 2009

Saturday, August 29, 2009

Saturday, 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."

Friday, August 28, 2009

Friday, August 28, 2009
Tonight's featured Mattie creation is one of the boats he designed with Jocelyn in the Lombardi Clinic for a boat race against his good buddy, Brandon.

Quote of the day: "How beautiful a day can be when kindness touches it!" ~ George Elliston

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.

I am happy to report that I was able to get Peter out of the house today. It was NOT any easy mission. Peter has been working intensely by day to play and entertain Mattie, and Mattie has really heavily relied on Peter. To get Peter out of the house today, was a three woman mission. Karen had suggested the idea of a massage to me, and I thought that was a very good idea for Peter. So I contacted my dear friend, Junko, and she planned the rest. Thank you Junko and Tad for spoiling Peter today by giving him the gift of a massage. He was reluctant to leave us at first, but we practically threw him out of the house, and the fact that you made an appointment for him, inspired him to really go! Thank you, because the tension and stress Peter and I live with on a daily and hourly basis is toxic!

Mattie and I watched videos today, and also played together on his Nintendo DS player. I want to thank Linda, Mattie's childlife specialist, for giving us a second DS player, so that Mattie and I could play against each other. However, while Peter was gone today, Mattie asked that I play with him, which was a major problem since I am not the technologically savvy person in the household. I couldn't figure out how to sync up the players together, so I paged Linda at the hospital. Linda walked me through the set up process, and Mattie and I played for hours. Thanks Linda! Karen and my parents were Mattie's cheering section, since we were doing a car race. But as I told my readers many times, I have perfected the art of LOSING big time this year. Mattie seems to get a kick out of the fact that I always lose, and on the DS, losing for me usually means my car lands sunk in the water, hitting a guard rail, or stuck in sand.

The days at home are LONG! In addition, Karen astutely pointed out that my days are ALL the same. Indeed they are. It involves meeting Mattie's needs, not leaving the house, and sneaking food in one's mouth along the sidelines, because Mattie doesn't like the smell, sound, or mention of food around him! This afternoon, Mattie, my mom, and Karen played with all the growing animal capsules Mattie has collected this year. We gave Mattie a tub of warm water, and all three of them were tossing capsules in the water, and trying to figure out what animal was going to emerge from each capsule. I snapped some pictures of this event today. I call it an event, because anything that brings Mattie off the couch and engaged in something is an EVENT of grand proportion.

Left: Mattie, my mom, and Karen.
Right: Mattie classifying the animals that emerged out of the capsules that melted away in the water.

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.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Thursday sounds like it was a very full day. I am sure it was good to see the nurses and technicians at Georgetown who have become part of an extended "family" for you. It definitely sounds like you made the right decision with the sedation for the scan; it was definitely a great idea to do all the necessary care for Mattie while he was under sedation. These normal events have become very traumatic for him and while I am sure he feels better now that they are completed, getting them done would have been almost impossible. As the staff at Georgetown noted, you are definitely a trained caretaker whose skills are a match for the staff in some area. I've met a lot of parents who refused to be trained in any aspect of their child's care; you on the other hand have gone well above and beyond and Mattie's health and well being show that. We will all continue to pray that he can take the necessary medications that will make his time more comfortable."

The second message is from our favorite CT tech at Georgetown, also known as Mattie's "big brother." Jey wrote, "I haven't sent you any emails because in my heart I wanted you to be able to spend as much time with Mattie as you possibly could without any interruptions from me. As I read the blog I couldn't help but to cry as I am doing now because I know in my heart that my little brother isn't doing very well and to see the pictures hurt that much more. I truly wish I could do something to take all of this away. I am truly heartbroken from what is happening to Mattie and to my extended family. I know that GOD says that the issue of death is not ours to worry about but I must admit that I am having an extremely hard time not concerning myself with Mattie's condition and as it gets worse it makes it even harder. I know that my hurt doesn't compare to what you are experiencing and I am so sorry for what is happening to my family I LOVE YOU GUYS with every breath I breathe. I am not sure if I will see you all again and If I don't just know that no matter where I go in life I will do everything I can to never forget you. I know that as people get older in life they tend to forget things but I am going to do everything I can not to ever forget you. I am going to end this by saying I hope to see you all soon."

August 27, 2009

Thursday, August 27, 2009

Thursday, 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

Wednesday, August 26, 2009

Wednesday, August 26, 2009
The Mattie creation tonight features on canvas his interpretation of a rocket ship! Mattie has been very prolific with his art in clinic this year. He seemed to really develop a love for painting.

Quote of the day: "The whole world is a very narrow bridge and the essence of life is not to be afraid." ~ Rabbi Nachman of Bratzlav

Mattie got into bed last night and watched a movie and fell asleep. However, Peter and I were up until 3am. It seems this is the only time of day we can actually talk about things and plan for the next day. It is a sad commentary, but the reality when you are dealing with a young child who has cancer and is also dying.

Mattie slept better last night, because he is in my room and sleeping in our big bed. I have found that if he sleeps right next to me, he doesn't have nightmares as often, because I can hold him and instantly calm him down. Needless to say, he had a peaceful sleep last night, and slept almost on top of me until 1pm.

Mattie did not need oxygen today either, which is wonderful! However, he continues to be weak, and is vomiting. He plays, but his play is different now. It is more like play through observation, because he doesn't seem to have the energy to participate. Mattie was very focused on Peter today. He wouldn't give Peter a break for half a second. Mattie wants Peter by day and me by night. It is a hard dynamic, and his level of insistence, demands, and agitation can be almost overwhelming at times. Mattie played the Captain Mattie game today again with my parents, Peter, and Karen. However, what continues to plague me is that Mattie refuses to get off the couch all day. He will either watch videos or watch us try to engage him in play. He rarely if ever moves around or even gets some fresh air. I know it is Mattie that I am looking at, because he looks physically the same, but the personality and spirit, is no longer my son. Cancer continues to take over the beautiful aspects of his character.
We want to thank the Tilch family for a very generous lunch, and a wonderful gift bag of crafts and Legos for Mattie. Thank you Patricia for the lovely candles too! Our family appreciates your support.
Later in the afternoon, I went to visit Ann's parents, and spent a chunk of time with them. I want to thank all of you who wrote to me today regarding my visits to Ann's parents. I appreciate your understanding and support of my choices. I find it particularly interesting that Mary, Ann's mom, isn't feeling well herself, yet seems to have a very clear and intuitive sense for how her husband is feeling. I suppose this is what happens when you are married to someone for 50 years. I also wanted to comment on the beauty of talking with an older adult. Older adults understand and appreciate the art of conversation. In a way it is an art form that is becoming lost with the younger generations, where the quick fix is what is sought after, information is communicated in brief text messages, and our day to day pace is just so fast and furious, that we miss the wonderful opportunity to just be able to sit and chat. I don't wish any of you the year we have been living through, but experiencing cancer has caused me to re-evaluate everything, and to appreciate the more meaningful things in life. In fact, I almost feel like I think clearer and feel much more than I ever did before. This clarity within myself is a gift I hope never to lose, I just wish it did not come at Mattie's expense.
When I got home this evening, Mattie was surrounded by gifts. He received many wonderful gifts such as a can of wands from Bob Weiman, pirate items from Diane Bancroft, a 3-D puzzle and zoobs from the Lai's, a stuffed animal walrus from his buddy Claire F., a coloring set from Beth E., and Red Sox gear from Angie. Thank you all for these great gifts. They brought a smile to Mattie's face today! Which these days is no easy task!

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.
Left: Mattie's tarantula
Right: Mattie holding a large fly swatter from his birthday party, which he was planning on using on the giant roach!

We would like to thank the Putnam family for a wonderful dinner. Thank you Grace for providing us meals twice this week. Mattie loves the new Indiana Jones Lego set, thank you! We ate in stages again tonight, and that seems to work. Karen sat with me first, and then chatted with Peter while he had his dinner. It is nice not to eat alone, and to have a friend staying with us who seems to relate to Peter, myself, and my parents in a sensitive yet unobtrusive way.
As we head into Thursday, Mattie is headed for his CT scan with sedation. It will be a long afternoon, and hopefully through the CT scan, we can get a feeling for how responsive the tumors were to the Cyberknife procedure. We also have to start a dialogue with Mattie about the possibility of taking VP-16, but I realize that this last chemotherapy attempt may be just too much for Mattie. Keep us in your thoughts and prayers. Peter and I are so exhausted, however, we continue to do what is needed to make sure Mattie gets the best possible care and attention.
I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I was very disturbed by Tuesday's blog. To read that someone saw your kindness to Ann's parents in any way but a positive light, shames them, not you. It is clear to the majority of us that not only are you not "shirking" your duty to Mattie, you have been on duty 24/7 now for more than a year, always with the fierceness only a mother's love can provide. In addition, visiting with the sick or with elders who are unable to get out is a mitzvah, a good deed/requirement in this life, and does not in any way say that you think you are special for doing so. Many people shirk duties that they should do when given even a small excuse; you make a commitment and carry it out in spite of your immense commitment to Mattie. I respect you for that and I feel sorry for those who don't understand and who say unkind things as a result.The transporters, the military people and the alumni group have responded that they are praying daily for Mattie and your family, and that they are adding the issue of Mattie's inability to eat and drink to their efforts. I hope that the doctors are able to find a solution to this soon; I know it is an ongoing heartbreak for you as well as debilitating for Mattie. You were in my thoughts as soon as I awoke this morning as you are every morning. I continue to pray."
The second message is from a close family friend. Kathleen wrote, "I was just reading your blog and I want to say, if it helps any, think of me holding your hand for strength, think of all of us who read your blog ( I believe I can speak for all of us, and no one would mind) we are all with you, envision us all holding your hands holding you up, in spirit and strength, count on me, count on us and thank you for showing us Mattie's beautiful picture, it is so bright and colorful."

The third message is from one of Mattie's preschool teachers at RCC. Marilyn wrote, "I have kept up with Mattie's situation through the blog, and my family and I, like all your other readers, are filled with sadness at the prospect of Mattie's losing his battle with osteosarcoma. Reading the story of his illness and the incredible fight you and he have waged has opened our hearts to moments of amazing bravery, wincing pain and fear, overwhelming exhaustion, grinding perseverance in the most uncomfortable settings, and a jaw dropping medical education. You must never question what you have done for Mattie. No parents have ever shown greater love and determination to help their child. How we wish the story could end differently. Lately, I have been moved to watch the whole stream of photographs at the beginning of your blog. That vibrant, whip smart, determined little boy is the one I will always remember. One does not often meet a child with Mattie's spirit and gifts, and I think that is one of the reasons it is so very hard for all of us to accept losing him. Why create such a remarkable child only to have him meet the fate dealt to Mattie? My family joins me in sending our hopes and prayers that you will all be surrounded by a pain-free, gentle veil of peace and acceptance as the time comes for Mattie to leave this world. We will be with you in spirit on this last part of your family's journey."
The fourth message is from my colleague and friend. Susan H. wrote, "I just wanted you to know that I continue to read the blog daily and am truly changed by this experience. Mattie has a legacy that is being set up to live longer than his physical body. He truly has meaning to a lot of us in places, people, and situations that you would least expect! I've never even met him but he, along with you and Peter, continue to change my perspectives on cancer and the devastating effect it has on all loved ones involved. You and Peter have generously offered us an incredible insight into the family struggle with cancer, and I for one thank you for that. I've been wondering lately about what will happen with the blog when Mattie passes on and I'm hoping you will continue to write as his passing does not end everything that your friends and colleagues are concerned about. And visiting with Ann's parents? Go for it! I can imagine it can be defined as healing moments for you - it lets you step into your true calling of being a helping professional, it gives your love of people and friendship a place to shine, and it nurtures that very important inner part of you. Don't care what other people think, I would imagine most, if not all, of your blog followers are 100% behind all choices you make. My husband's standing behind me telling me it's time to shut my computer down. I'm having a full knee replacement in three hours. But trust me, when I am finished with surgery, I'll be ready to read your next blog entry. Take care, Vicki, and keep doing what's right for you, Peter, and dear Mattie. And I am also attaching a picture of a quilt I made several years ago that at times reminds me of what your life might feel like. So intense and gray, and foreboding at times, but knowing that there is still beauty in the world that currently may be difficult for you to see consistently. Perhaps the beauty is hope, love, friendship, and all the other wonderful things that sustain us. Truly, you are surrounded by it."
The final message is from a friend of my sister-in-law's. I have never met Lesley in person, but we share a lot in common. Lesley wrote, "The gift of your blog is that you never have to explain. You have shared the depth of how horrific this disease is that there is not a reader out there that judges you. If you find some peace and serenity in being with Ann's parents then somehow that has to happen. You speak of shutting people out, but I think you blog has allowed people to stay connected and understand your need for privacy. Peter and you are doing what Mattie needs and that is something no one can judge. When you are ready to be with your friends, they will embrace and support you. You will not need to already have. Your strength must come from a place that I personal have never had to find. Yesterday my healthy son fell and he got mildly hurt. As he hit the ground, I swear a chill ran up my body as I somehow experienced his pain. I can not even image what it must be like to hear your baby crying in pain for hours on end and not be able to control it. You have been asked to be stronger and braver than most people could ever imagine. We all continue to pray for Mattie's days to be pain free. With so much love and hugs to this woman warrior I never met but so respect."

August 25, 2009

Tuesday, August 25, 2009

Tuesday, 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.

Quote of the day: "The feeling of sleepiness when you are not in bed, and can't get there, is the meanest feeling in the world." ~ Edgar Watson Howe

Mattie had a VERY hard time going to sleep last night. In fact, he and I were watching a Scooby Doo movie, but then he fell asleep. Within minutes he woke up after I shut the video off. He was so upset that I shut it off, that he demanded we turn it back on, and watch it from the beginning. So needless to say, we did not go to sleep until 2am!
Mattie continues to be in a Daddy phase, and needs Peter's attention 100% of the time. There are times I feel as if Mattie is shutting me out during the day, but I go with whatever he needs. None the less, I imagine Peter is tired and played out. Because Mattie is hard on Peter by day, I take over the nights. However, the lack of sleep at night, and being up all day, has continued to take its toll on me. Mattie continues to sleep talk and have nightmares. However, last night, I slept on the edge of his twin mattress, and I am happy to report at least one of us had a more peaceful night of sleep.

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.
We want to thank the Putnam family for a very generous and tasty lunch! Thank you Grace for the wonderful fruits! I also loved the hydrangea plant. Thank you for bringing a green friend back into my life.
This afternoon, Peter and my parents stayed with Mattie and played with him. But Mattie really wasn't in a playing mood. He spent the majority of the day on the couch watching videos. That may not sound unusual to some of you, but for Mattie this is VERY unusual. Mattie was the kind of child who never sat still. He was always busy doing things, and never had the time or patience to sit still for hours on end to watch TV or videos. So when he lies in one place for hours, this is a major indicator to me of the extent of his disease. Because Mattie was at peace, and had three very attentive adults surrounding him, and another one of the way (my lifetime friend, Karen arrived this afternoon), I felt that I could leave the house and visit Ann's parents.
I have debated back and forth today, whether to tell my readers that I visited Ann's parents this afternoon. I can imagine that when you hear I am visiting Ann's parents several things may come to mind. First, perhaps you are thinking that I have ample time on my hands, that I can leave each afternoon this week while Ann is away, or maybe that I am not completely invested into Mattie's care right now. I assure you neither are the case at all. Second, you may be asking why do I have time for Ann's parents, yet have shut out many of my loving friends in my life? Third, perhaps I am giving you the idea that I wish to be viewed as some sort of special person, who can care for my terminal son, and also visit Ann's parents at the same time. Again, this would be VERY far from the reality of the situation. This is not who I am as a person. I do NOT do things because I want to be viewed as "special" in other people's eyes. I do things because in my mind and heart this is the right thing to do. Because these questions have been rolling around in my mind today, I was tempted not to share my visit to Ann's parents with my readers, in fear of how these visits may be interpreted. However, as I kept reflecting on these questions today, I felt that I would be disingenuous to myself and to the nature of the blog, if I did not report out how I spent my day. Yes this is Mattie's blog, but it is also a blog that paints a picture on how cancer impacts an entire family. So part of my day included a visit to Ann's parents. I feel very, very upset about Mattie's pending death, and I refuse to do anything social or anything that is perceived as fun for myself right now. I can rationalize leaving the house to visit Ann's parents, because this is helping other people who need the support, and this gives me a chance to have a much needed respite outside my daily hell. But the simple fact of the matter is that cancer has transformed my life, and while transforming my life, it has transformed my friendship with Ann. Ann has done more for my family this year, than I could even list or imagine. She did not get titled my angel of Hope for no reason. So when she is out of town, I am compelled to do something, anything, that will show her how I feel about all the loving things she has done for us all year long. I am sure some of you are reading this, and are saying, YES Vicki, we know this already and it is okay, but I felt the need to spell it out in case there was any doubt. Visiting Ann's parents is about friendship pure and simple, and it is not about having free time, getting distracted from Mattie's care, shutting out my other friends, or wanting to look important.
While I was visiting Mary and Sully (Ann's parents), the assisted living facility's fire alarm went off. I am clearly not ill or frail, but I can tell you the sound of the alarms and the PA system were down right frightening. I could tell Ann's dad, who is bed ridden at the moment, was getting most upset by this sound, and as this continued on, I wanted to go downstairs and strangle who ever created this policy to let the alarm continue ringing until the fire department responded. Between caring for Mattie and observing the care Mary and Sully receive, it just makes me feel very vulnerable. Whenever you have to rely on a stranger to help you go to the bathroom, get showered, and take off and put your clothes on, it is humbling. In a way, all of these things are a violation of one's personal freedoms, yet when sick or impaired, you are left with no other options. No matter how often I have seen these freedoms taken away from older adults, I still continue to feel upset. I guess that is a good thing, and when I become complacent and indifferent to these violations of freedoms for older adults, then I should be concerned.
When I arrived home, Mattie was still sitting on the couch. He did play the Captain Mattie game for a bit with my parents, Peter, and Karen. Karen was given a name in this play scene, but for the life of me, I can't remember it. However, I was determined to get Mattie outside today. He hasn't left the house in four days. So we all encouraged him to ride Speedy Red. Which he did. He went outside, but you could see his heart wasn't into it this evening. I did capture some photos of his ride.
Left: JJ (our resident Jack Russell Terrier) checking out Mattie in Speedy Red!
Right: Mattie behind the wheel of Speedy Red!

We want to thank the Ferguson's for a wonderful dinner. Ann, your brownies are incredible, and enabling me to write tonight's blog. Mattie hasn't opened up the gift you sent him yet, but I so appreciate your thoughtfulness and continued support. The flowers are beautiful! Thank you! Karen and I ate dinner together tonight and chatted, and then I relieved Peter, and he sat with Karen and had dinner. Karen did double duty tonight, and though she is my friend, Peter and Karen get along very well, and I am happy she can serve as his friend now, through this very heart breaking time.
I would like to end tonight's posting with two message. The first message is from my friend, Charlie. Charlie wrote, "Thank you for this lovely idea of sharing Mattie's creations with us. They are beautiful and life affirming and they tell me that in a hundred different ways, Mattie's presence will continue in people's hearts and minds. I am so sorry that Mattie continues to have problems sleeping and eating/drinking. How awful and exhausting for all of you. Since these are the things that normally help our bodies build strength, it is so difficult to see these denied to Mattie. I am glad Mattie found the strength to play with Peter and your parents; it is good that he is still able to be a child (in some ways) in spite of the disease. I will pray for Mattie to find relief from pain and to be able to take the medication that is planned for later this week. I will also pass this information along to the many who have joined me in praying daily for Mattie."

The second message is from a fellow RCC parent and friend. Grace wrote, "I also wanted to let you know how much we all are thinking of you daily in prayer and thought. When news broke that Mattie's cancer was no longer treatable, I can't begin to tell you how many people said that they spent the entire day crying. Please know that we are going through this with you now and always will be. I've been meaning to tell you that when we were at the prayer service there was a time when we stopped in silence to pray and reflect. People were quietly sobbing and then a huge, thunderous roar of rain, one of the loudest downpours I've ever heard, came pelting down on the roof. It was as if God was crying along with us. It was such a powerful, symbolic moment."

August 24, 2009

Monday, August 24, 2009

Monday, August 24, 2009

This painting was created by Mattie. I am going to try to post a picture of a Mattie creation each night for you to enjoy! You will see he has been very prolific just this year alone. Also notice the beautiful paper flowers below the painting. He made these for me to celebrate Mother's day!

Quote of the day: "Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries, it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death." Anonymous

Sleeping has become even more challenging with Mattie now. I have a feeling all the pain medications he is on is causing him to have nightmares and to talk in his sleep. None the less, it makes for a very troubling night to lie there and listen to what is coming out of Mattie's mouth. I am happy to report that Mattie did NOT need oxygen again today. I am thrilled, two days in a row! None the less, he is very weak, and did not ride Speedy Red for the fourth day in a row! In addition, he can't even keep water down. Whatever he attempts to consume gets vomited up. Despite being on powerful anti-emetics, he is still vomiting. I sent Mattie's doctor an e-mail today, because I do not know how on earth Mattie will begin oral VP-16 this week. This is an oral chemotherapy he would swallow once a day for 20 days. Frankly, though this would be a great thing to try, I don't know how I will get Mattie to actually take it! I ask you to send all your positive thoughts and prayers our way regarding the consumption of VP-16.

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.
When Mattie came downstairs, he was eager to build a Lego set with Peter. He became very focused, and thank goodness Legos still capture Mattie's attention! While they were playing, I got myself dressed and then prepared lunch. Thank you Susan S. for offering to bring us lunch today. We value your support.
As many of you know, Ann is out of town this week, and when she is gone, Alison (our Mattie Fund manager and communications director for Team Mattie) takes over coordinating our needs. Alison left me a very funny message today, which got me to chuckle. This is virtually hard to do these days, but Alison has a witty sense of humor which I have always appreciated from the first day we started working together. Thank you Alison for your willingness to always help out in a moment's notice. It means a great deal to Peter and I.
I also received a very touching and gracious e-mail today from Peter's boss at Voxiva. Grant wrote directly to me. Grant is an avid blog follower, and wanted to lend support to us in some way. So in his message he let me know that Voxiva is completely behind our family and understands what a devastating time this is for us. Grant let me know that the company has put Peter on Compassionate Leave, and they do not expect him to come to work right now, so that he can spend as much time with Mattie before Osteosarcoma takes over his body. In addition, Grant let me know that Peter's job was not in jeopardy. Needless to say, in the midst of this crisis, it was an amazing gift to receive Grant's e-mail and to feel his level of support and compassion. Grant, we are grateful and appreciative, and I won't forget this level of commitment and kindness toward my family.

My parents came over this afternoon and played the Captain Mattie game for over an hour. In fact, now Mattie's tooth has become part of the play scene. The tooth has magical powers! If only this were true! However, as the afternoon wore on, Mattie was getting tired, and then had a vomiting fit. That alone wiped him out. I helped him to calm down, and eventually he fell asleep on Peter. While Mattie was resting, I went to visit my friend, Junko, who was admitted for a night at the George Washington University Hospital. Just so you can put things into context, Junko's son is Kazu, and Kazu and Mattie met at SSSAS' summer camp and became good friends after that experience. Junko and her husband, Tad, have done so much for us this year, and have become dear friends. There was no way I was not going to visit Junko in the hospital, assuming she was up to see visitors today. So this afternoon, I had the pleasure of visiting with Junko and Tad and sitting by her side and finding out how she was feeling. I could tell Junko was very touched to see me, and we spoke a lot about Mattie. I am beginning to have some understanding for the profound effect Mattie is having on my friends' lives. I am not sure why this hasn't hit me before, but I am allowing this to be absorbed in. Despite the fact that Junko wasn't feeling well, she is an extremely gracious and loving individual, who sat there more concerned for me than for herself. I guess that is the sign of a true friend. Junko's doctor came to visit her, and he was a delightful fellow, but I couldn't help myself, and I jumped into their conversation. I guess I am so used to fighting and advocating in this system, that it is second nature to me. I hope Junko and Tad understood my motivation was to help only!

When I got home, Mattie was beginning to awake. We said good-bye to my parents, and then Mattie and I started to play on his Nintendo DS. I think Mattie gets a sheer joy out of watching how bad I am at this. Of course, I have perfected the art of losing this year, so if I actually had to play to win, I may have a problem! Mattie and I played for a while, while Peter had dinner, and then Peter took over and played for quite a while with Mattie. Mattie and Peter teamed up together, and Mattie won all sorts of racing car cups, which he was very excited about. We want to thank the McCleary family for a wonderful home cooked dinner. We loved your chicken and apricot sauce. There is nothing like an apricot. Thank you for a lovely dinner and for the tasty petit fours. But a special thanks for the beautiful sunflowers. Clearly you read on the blog how much I enjoyed giving them to Ann's mom recently. To me they are just the picture of happiness, and Lord knows we could use some happiness in our lives right now. Thank you Leslie for your thoughtfulness!
As Tuesday comes around, my lifetime friend, Karen, is coming to visit us for four days. Karen is very familiar with cancer, as she lost her cousin to this horrible disease, and helped care for her cousin in her final days. None the less, our life is so chaotic, and Mattie is so fragile, we want to make this visit as pleasant as possible for Mattie.
I would like to end tonight's posting with four messages. The first message is from my friend, Charlie. Charlie wrote, "Night terrors are awful. I think they are worse for the person who observes them than the person who has them since normally, the dreamer doesn't remember but the observer (usually the parent) is in a state of panic listening to the sleeper. These never failed to wake me from a sound sleep and put me at the side of our son's bed, frantically trying to rouse him, often to find he did not remember anything. So my heart goes out to you, they are horrible but not hurtful. I don't believe the one above would send angels in a way that would cause night terrors. I believe if/when Mattie sees angels, they will offer him wings and to teach him to fly and knowing Mattie, if he screams, it will be with happy excitement, not fear.I am glad you had a good meeting with Rev. Greenfield and that he did not belittle your feelings and fears. I assumed he was someone with an open heart and mind, I could not imagine you continuing a religious relationship with someone who did not share this way of thinking with you.I do want to share my thoughts about you and Peter as parents. I hear what you are saying about being failures for not being able to protect your child from this horrible disease. However, if there were two parents who tried harder, sacrificed more, loved deeper, I have yet to meet them. You made Mattie's time here the best it could be, you loved him with everything you have and protected him from hurts both intentional and unintentional by medical staff and passersby. You've left those of us following the blog in awe of your determination to do all that could be done for Mattie. If there is failure here, it is not yours. You are in my prayers as always."

The second message is from one of our wonderful HEM/ONC nurses at Georgetown. Laura wrote, "I am so sorry it has taken me so long to email you. I was never exactly sure what to say or how to say it, not that I am trying to excuse the delay. I have thought about the two of you and Mattie each and everyday. I know that I have not had the opportunity to take care of Mattie a ton over this past year, but each and every time I have, I have been amazed. I cannot even begin to imagine having a child with cancer. What amazes me so much, is the love I saw between both of you and Mattie. It was obvious that his well-being was your priority. You were both constantly involved in Mattie's care, asking intelligent questions, advocating for his treatment, and most of all making sure he was okay. Please know that you have constant nursing support, that everyone is a phone call or email away. Besides nursing and medical support, please do not hesitate to contact me, even though I don't know you as well as some of the other nurses. Whether it is running errands, doing laundry, cleaning, talking, cooking... anything I can do to help, I would love to. You two are incredible people and parents to a wonderful boy.I'll be thinking of you both, Mattie, your family and friends...Please let me know if I can do anything."

The third message is from a friend of my sister-in-law's. Alex wrote, "I am a friend of Lisa and Chris' from Beaver. Though I no longer teach with Lisa, we are good friends and she has shared your journey with me, and of course, I have read your blog constantly. Of course, so many times I have wanted to write--always waiting for the right time (is there such a thing?), and not surprisingly, in what you have written this morning, I have found the invitation. (Warning: I am also a Congregational minister!) I was struck by your ruminations on what's next for Mattie--where is he going--is he dreaming or having nightmares about the angels coming to get him, and will St. Peter and company "get it" when they receive this gift of Mattie. While you know as well as I that we cannot know all of the answers, I feel in my heart and soul that they already "get" Mattie--why else would they come for him after so little time with you? They need him--not more than you do--no loving God would presume that, but perhaps it is something that cannot be quantified--the need in heaven versus our need for Mattie here on earth, that is. Please know that there is a place for him there because they have been preparing it as they have watched you and been with you-even on the most lonesome of days and nights-because Mattie is so special to you and t this world, their place for him has to be the same; they will take care of him and his vocation though short lived with us here will be continued elsewhere. They are ready for him because they have heard your worried and dreams for him and they will continue to listen even when his body is taken from you. They are trying to get you ready through Mattie, but there is no right way to do this. My family--who has read along with me at different points, are grateful for all that you three have taught us about living and dying and being and loving. You cannot know now, but I hope that as your days go on, you will know that you have all changed our lives forever. Mattie knows, I am sure of it, and i am even more certain that St. Peter and all those who will welcome and celebrate Mattie when he arrives know too. May you know peace in the coming days."

The final message is from a fellow SSSAS parent. Kathryn is a cancer survivor and has reached out to me throughout this year. Thank you Kathryn! Kathryn wrote, "I have been out of town and have just learned your devastating news about Mattie's prognosis. I went to my son, Matt, who sold goods at the bake sale for Mattie, and just completely broke down. I cannot tell you the depth of my sorrow for Mattie, you, and Peter. I knew it was a battle, but like you, I had such hope. Having the two of you as parents and the absolutely best advocates anyone could imagine, I believed Mattie had the odds in his favor. But cancer is a *itch - pure and simple - and the disease has its own mind, as you have said. It is ravaging and horrible and must be eradicated in all its forms. It is a tragedy beyond measure that it is still so powerful, despite the improvements in treatment. I am working hard on the breast cancer front, and will further strongly and vociferously support any efforts on Mattie's disease as well as on the brain cancer affecting Holden and graduated senior Natalie. But most importantly now, I am here for you, Mattie, and Peter. You have my prayers, my tears, my thoughts and my words that I will do anything you need. I will check on this with Team Mattie. I know it is painful to remember the Sloan Kettering advice. But my hope and prayer is that you remember and trust why you chose the course of action which gave Mattie a chance to have a long life. You are such a loving, caring and passionate person and parent that I can't imagine you doing anything else but taking every possible effort to save your son's life, as you are making every effort now to minimize his pain. That is who you are and how much you love your wonderfully special son. Mattie is such a gift to all of us - a trusting, loving and exceptionally courageous child who has endured more than most adults in a lifetime. He is so like his parents who have been fighting for him every step of the way through all of the reversals, medical system successes and failures with a constancy that is truly remarkable. You are an amazing person, Vicki, who has been tested at every level by this disease. I know now isn't the time for you to see that but I really hope you can in time. You have never lost your focus on doing your very best for Mattie. I wanted to write you about this after having had the great pleasure of meeting you and your mother at the Gehr's house. I felt such a spiritual quality about you - a deep inner strength that has enabled you to persist when others would have despaired. I am not saying that you haven't felt the horrible effects of Mattíe's disease but you have stayed upright and fighting, all the while concerned about how best to take care of Mattie (amidst reminders to remember yourself). Your ability to write such a candid and powerful blog about the past year just demonstrates that strength tenfold. You have let us into your very private process and we are forever changed because of it. You have touched so many lives with your battle and those many are so distraught to hear Mattie's prognosis. Losing a child has got to be one of the lowest circles of hell on earth. Deciding how to talk to Mattie about his terminal diagnosis is close but I share the perception of those who think he might have an inkling on some level, like he knew the bone bugs were back in his stomach. I just want you to know that I am with you, that we all are with you, aching for your heart wrenching struggle. I hope you can take some comfort in the very close relationship you have with Mattie. That is so special and unique in light of all you have gone through as a family - and perhaps because of it, too. I was so touched to read about your time with him in the garden when he wanted to talk about being a baby. Such a wonderful moment of light in the darkness. May there be many more before Mattie's time comes. I am holding onto my Italian rosary (similar to the one I got for you all at the Vatican in Rome) and thinking of you, Mattie and Peter. I will certainly send him the most positive healing and comforting messages at 7:00 pm as well."

August 23, 2009

Sunday, August 23, 2009

Sunday, 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."