Quotes of the day (thanks Katie M. and Charlie): "There are stars whose light reaches the earth only after they themselves have disintegrated. And there are people whose brilliance continues to light the world though they are no longer among the living. These lights are particularly bright when the night is dark. They light the way for humankind." ~ an Israeli soldier, Chana Senesh
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~ Mother Theresa
I can always tell how I am physically doing, by how I am eating. Today food just doesn't seem appetizing or even worth eating. In fact, seeing it makes me feel sick to my stomach. There are also times throughout the day, I land up holding my chest, because I can feel it fluttering. Similar to how I felt when Mattie was first diagnosed in July 2008. It just feels like panic taking over my body, but then of course it subsides, and I can move on. Last night was a winner! I woke up this morning and I told Peter, that Thursday has to be our last night staying here, because if I don't go home by Friday, I won't make it here. I am physically exhausted, and don't get me started about my mental state.
Mattie went to bed after 1am. He had a challenging night. Filled with fevers, agitation, and the need for constant attention. I can't leave his side sometimes, and I attribute this to fear and anxiety, all of which is SO understandable. However, by 4am, chaos ensued. As you know Mattie receives total parenteral nutrition (TPN) at night. This bag of nutrients provides Mattie with 1200 calories per day, and has to be run over 16 hours. Not an easy task to accomplish as we head home, but I can tell compared to some of the other things I will be managing, this will be the easiest. I just feel bad that Mattie needs to be tied to an IV for most of his days. Any case, at 4am, the fat (and literally there is a bag of FAT hanging on the IV pole that gets infused in) clogged up Mattie's IV tubing. Betsy, Mattie's nurse, and I were working on this together for two hours, using flashlights so we wouldn't wake up Mattie. Betsy changed the IV tubing, the filters on the tubing, and so forth. By the time we finished we had two IV poles in the room. One running the liquid nutrients and the other IV pole running the fats. You have to understand our room is the size of a postage stamp, so having two massive IV poles in the room takes up real estate. Betsy handled this very well, and was calm and collected, because if I were her, I would have tossed all the IV bags out the window!
Mattie was assigned Tricia today as his nurse. Many of you may recall previous postings about Tricia. Tricia is an outstanding nurse, and a great advocate for Mattie. I will never forget the time that Mattie got mad at me during his first cycle of chemotherapy. He was having a tantrum and said just horrible things to me. Tricia talked to Mattie, and then landed up tucking both Mattie and I into bed together. We had many tender moments like this with Tricia over this year. Tricia also brings me hot tea every morning, and this morning it was greatly appreciated! She also ran around the hospital getting Peter coffee. I was happy to see that Tricia was assigned to work with Mattie today, because I was getting paranoid. I noticed we weren't assigned any of our usual HEM/ONC nurses all week (except for Erin one night, the rest of the time we have been here, we have had traveling nurses). Part of me worried that this meant our wonderful HEM/ONC nurses who we love just weren't sure how to proceed with us. Having Tricia today helped with my uneasiness.
We woke Mattie up at 10:00am. He woke up in pain, and is still on IV morphine. Almost every two hours. Norma, Mattie's sedation nurse this week, came to get Mattie at 10:30am to bring him down for Cyberknife. What do you say about a person who is coming in on her days off to help with Mattie?! Amazing! Mattie had a very long procedure today. Maybe about 2 and a half hours. During the first half an hour, Peter and I went outside to get some fresh air, while Linda stayed in the Radiation department with Mattie. It was wonderful to get fresh air, and Peter and I sat on campus, in a spot we used to sit in when Mattie was first diagnosed with cancer in July 2008. It was actually hard to be in this spot, because it made us reflect how quickly this fight was taken from us. After 30 minutes, I headed back down to the catacombs to sit in the radiation waiting room. Peter went to find Dr. Shad, the director of the pediatric Lombardi Clinic to ask her some questions about getting discharged on Friday. Peter actually sat in on Dr. Shad's rounds, and I am SO happy he did, because a lot got accomplished. Meanwhile, as I was sitting in the radiation department, Linda came out to find me and gave me an update about Mattie. I was telling Linda how hard this is for us, and I also told her of my guilt for even taking a break. In essence do I deserve a break, when Mattie can't take one, and he is fighting for his life? Linda answered this question with a resounding yes, and of course we talked about things that I may want to do with Mattie before he gets quite sick. Linda has earned her title, Angel of Caring, for good reason!
While I was with Mattie today, Mattie had some visitors. We want to thank the Bower family for the wonderful lunch and desserts they provided us. We so appreciate your support. In addition, Liza B. (one of Linda's former volunteers, and a Mattie helper) came by and dropped us off some lovely pastries and a card. Sorry we missed all of you, but this week, we have our hands full with Cyberknife and the recovery from daily sedation.
Peter came to find me after he spoke to Dr. Shad. I learned that Mattie will receive his last Cyberknife treatment on Friday. In addition, his chest x-ray revealed that the right side of his lungs is almost completely filled with fluid. So though we did a thoracentesis (draining of the lung fluid) on Monday, Mattie will have to have another one tomorrow right after his Cyberknife treatment, while he is still under sedation. Dr. Synder, Mattie's oncologist, came by to visit us today, and she explained to me why this fluid is building up in his lungs. Basically the lung tissue is rubbing on the tumors with each breath Mattie takes. The rubbing further makes a sore in the lung tissue until fluid starts to leak from the lung tissue and build up. The scary part about all of this, is that for Osteosarcoma children, what kills them in lung disease. If we can't control the fluid, he will be unable to breathe. Ideally, we are hoping the Cyberknife treatments help shrink some of the tumors on the liver, which are putting additional pressure on the lungs, and further creating the lung tissue to rub together, and exude fluid. But there is no telling that Cyberknife will work or even be effective for Mattie.
After Mattie's procedure, the sedation team brought Mattie back to his room. It literally is a process. Mattie comes up on a stretcher, with a doctor, nurses, and a crash cart. The crash cart is needed because we are transporting Mattie from one floor to another in the hospital, using an elevator, when he is completely sedated. So anything could happen along the way! That alone is frightening, and this process has happened four times already this week. While Mattie was recovering in his room, I was in the hallway talking to Laura, one of our HEM/ONC nurses. Out of the corner of my eye, I could spot two of my students who came to visit. I couldn't talk to them long, but I appreciated their support, and their understanding that I had to jump back and be with Mattie. But Julie R. and Nicole M. came bearing gifts. They brought Mattie a magic trick, and they brought me a delicious homemade chocolate cake. In fact, I shared it with the nurses too, and they were in love with this cake. Thank you Julie and Nicole. You made a lot of people happy today!
However, this was a difficult day. Mattie is highly anxious, wants no visitors, wants Peter and I by his side constantly, and did not even want to play with Linda. In addition, he has been complaining of eye pain for the past three days, but today's pain was excruciating. Peter and I think that his eyes are getting dried out during the sedation process, since they become slightly open throughout the procedure, and remember Cyberknife is at least two hours every day. So Mattie has been very uncomfortable all day. Tomorrow we are going to ask that a lubricant be put into his eyes so they don't dry out. Right now, I have an ice pack sitting on his eye! With each cry and whine, Peter and I feel like we are further losing control of the situation.
This evening, Dr. Bob came by to visit and lend support. This was clearly not a medical visit, and we appreciate his concern and friendship. But Mattie did not want anyone in his room, and pointed Bob to the door. Bob handled Mattie's level of non-responsiveness very well. Soon after Bob left, Tanja and her daughter Katharina came by to drop off dinner. Mattie started screaming, so I knew that he wanted everyone out of the room. I spoke with Tanja and Katharina for a few minutes in the hallway, and then jumped back inside. Thank you for a lovely homecooked dinner and for all the wonderful gifts you brought Mattie back from your trip to Germany. Mattie loved the light up dinosaur and the slimy octopus. In fact, Mattie had me get Katie (one of our wonderful HEM/ONC nurses) because he wanted to scare her with the octopus. Katie hammed it up and Mattie loved it.
Left: Mattie building a ferry boat Lego today!
Right: Mattie holding up his light up dinosaur egg that Tanja and Katharina gave him.
This evening, I went out into the hallway to talk with Dr. Shad. She spoke to me about Mattie's palliative care options. She is encouraging us to do palliative care with Georgetown rather than with hospice. She assures me that they will work with Peter and I to keep Mattie home for as long as physically possible. But when it gets too much for us to handle, he will be able to be cared for in the PICU. She spoke to me about such directives as Do Not Resuscitate. In fact, I am going through the motions, but I can't believe I am forced to make these major life changing decisions now in my life, and for my seven year old son! There is just so much wrong with this picture. I want Mattie home, but I fear I won't be able to manage him there, especially as his lungs fill with fluid. In fact, I am happy to go home tomorrow, and yet at the same time I am frightened. We are headed home to learn how to administer oxygen, use a pulse oximeter (a non-invasive way to assess oxygen in the blood), and administer TPN and fat nutrients. All of this is overwhelming alone, but watching his breathing will be the most stressful for me. In fact, we are going home which should be a happy thing, but it really isn't. For the first time, I am headed home from the hospital and feel disillusioned, knowing that I am headed home to capture memories with Mattie, before Osteosarcoma claims his life. I can't tell you just how devastating this is.
I would like to end tonight's posting with six messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad that Wednesday's treatment went well for Mattie and that he is breathing better. Leave it to Mattie to find a way to make the treatment into a game and working hard to win. Mattie has the spirit of an Olympic competitor, always looking for the next challenge and showing us all how to take things in stride. What you are feeling with Mattie, wanting to preserve this time for yourself is perfectly normal. You are building the store of memories that will take you into the future and that is the most important thing right now. Mattie knows in his heart what is going on and I believe that is one of the reasons he also doesn't want company but only his parents and familiar things and a few select others around him. I think you will have to follow Mattie's lead on this and do what works for him and for you and not feel guilty about protecting your time together. I do want to comment on Dr Snyder's remarks to you about you and Peter being a vital part of Mattie's treatment program this year. This is absolutely true and she is not just being kind or trying to make you feel better. I know so many people who as much as they love their child, spouse or parent who cannot make the commitment to do the kind of medical care and loving treatment that you have this year. The person therefore ends up spending more time in the hospital or in a nursing facility because the person cannot face IVs or giving medications or clearing lines. So, believe me when I say, what you have done is well above and beyond. I hope Mattie's last two treatments this week go well, his temperature stays down and you are able to be released to go home this weekend. Know that a large number of people will be praying for you and Mattie tonight whether we are in the prayer group in person or elsewhere."
The second message is from Mattie's preschool director and our friend. Kim wrote, "I spent a bit of time this morning preparing the Parish Hall for the prayer service tonight. It was quite early – and I was all alone, and I used the time to simply immerse myself in thoughts about you and Peter and Mattie. I simply don’t know how you are going through this – but at the same time, I DO KNOW that you are going through it with unimaginable insight and courage. I suspect it doesn’t feel that way to you – but your strength shines through to the rest of us. Mattie is so special. That becomes clearer and clearer. I think you are so right to cherish and hold tight to the private moments your family now has. But even has you may close in a bit upon yourself, I’m sure you can feel the cocoon of love that surrounds you --- and will help you emerge from all this as the different “being” that you undoubtedly will be. I hope that the prayer service tonight will be a comfort for many people. Please keep reminding yourself that you are not alone."
The third message is from our friend Katie. Katie is Zachary's mom, and as many of you know, Mattie and Zachary were inseparable in preschool. Zachary has been right by his side this year! Katie wrote, "We've all been following the blog and news of Mattie's condition up here in Maine. We're thinking about you constantly and our hearts are aching. The kids understand -- on very different levels -- what's happening. There have been many "why's" asked. In typical 7-year-old fashion, Zachary commented, "Why don't the doctors just make a potion to cure Mattie? What are they, stupid?" The innocence of this comment actually made me smile. If only life were that simple. As you know, I was (and still am) ready to fly down with Zachary at a moment's notice -- if it would help Mattie and you all. I know that Zachary is worried that he won't get to see his friend again."
The fourth message is from a colleague and friend. Melissa S. wrote, "Dear Vicki, where do I begin? My words simply can not convey the grief I feel as you prepare to lose your most precious Mattie. I weep and can not explain the power of my tears--somehow I wish that those around you could cry some of your tears for you so that you might be spared just a sliver of your grief. I know in my soul, that this loss is just an earthly one and that Mattie will go on in spirit, as will your love for one another--but that seems like such minuscule comfort when viewed in light of the depth of the suffering that Mattie and you and Peter have endured and continue to endure. All I know is that YOU ARE COURAGE. I am completely humbled and shell-shocked by your journey and by your willingness to share it so honestly and profoundly. My life is deeper and richer because you have shared yours with me. Please forgive me for sharing this for it might seem a bit odd, but when I struggle to convey my thoughts/feelings, poetry sometimes helps me."
She is frailty, vulnerability, broken-ness.
He is yearning, a light in the darkness, hoping amidst fear.
He is frail, vulnerable, broken
She is reaching, fighting for light, borrowing faith.
He was knit in her womb, a builder of many, mysteriously wise,
She is his fiercest advocate, his tender touchstone, his heart's home.
They are family, mother and son, woven together, inextricably tied.
They are the clearest living picture of courage and love.
May you wrap each other in the awesomeness of your love for one another and somehow find a peace in the beauty that this love holds. You both are incredible gifts to one another and to this world. My deepest prayers are with you.
The fifth message is from Lesley, a good friend of my sister-in-law's, Lisa. Lesley wrote, "I am sure hearing from a stranger in your darkest moment is not comforting and I do not pretend to know how to do the "right" thing. I can let you know that I am up with you at night worried. I have identified with your family since our boys were born and seemed so alike. This year I shared with you many times that Mattie's behavior( the good, the bad) was typical of many seven year old children I knew....my hope was to comfort you. The play therapy session was truly something that let me know that he is no longer seven or typical. His desire to guide you is something that is remarkable and shows the type of unconditional love you have given him, he trying to givie right back to Peter and you. Mattie is insightful and poetic with his words and actions. I do not know where you get the strength but I do see that you have a community of people ready to be there for you on the days when you can not as strong. My thoughts and prayers are with your entire family."
The final message is from Meg, a former childlife intern of Linda's. Most of you remember Meg as Mattie's racing partner during physical therapy in the PICU. Mattie and Meg were good buddies, and instantly bonded. Meg wrote, "I have been thinking for the past week what I wanted to say to you both. But words cannot express my feelings. When I read on the blog the terrible news my heart broke for all of you. I cannot believe that it is true. Having a world without Mattie just doesn't seem right or possible. This just isn't fair. Above my computer on, my desk, is the statue that you gave me with the little boy holding a kite that says "Hope". I have been glancing and staring at it over the past week, thinking we hoped for nothing. I know we all hoped for a better diagnosis and out come but now I hope for something different. I hope that Mattie understands how much his parents love him and that they are willing to go to the ends of the earth for him. I hope that you and Peter understand how much Mattie loves you. I hope Mattie is able to spend his time enjoying his life and Speedy Red. I hope Mattie isn't in pain. I hope all you realize that myself, GUH staff, your blog readers have all been changed by you and Mattie. Lastly, I hope you and Peter know that Mattie will live in all of our hearts forever. Everyone who ever met Mattie, or read about him in the blog will have Mattie in their hearts. The ripple effects have been started. Mattie is leaving a legacy behind. People will learn from others what a special boy Mattie is and what a big heart he has! He will continue to change lives forever. I know you already know this but Mattie has a way of making the good come out in everyone and a way of getting under your skin. One can't help but fall in love with Mattie. Mattie made a difference in my life. His spirit and courage is truly a gift that we can all learn from. I am so grateful to have had the opportunity to get to know Mattie. My "Super-Mattie" book is sitting on my shelf and I have been looking at it a lot this week. Mattie really is a super hero. He has the strength to fight the villainous cancer mercilessly, along with the help of his side-kicks, Super Vicki and Super Peter. He is loved by all who are rescued by him. And most importantly he has a pure heart and fights for everything good in life. I can't imagine what is like to lose a child. But trying to imagine losing Mattie, and not knowing him closely, is something I can't begin to fathom. I know none of this can be any sort of a consolation for either of you and I wish I could just take all the hurt, pain sickness away. This just isn't fair. I am angry about this. The three of you are supposed to live happily ever after and I personally am infuriated that cancer is taking that away from you. My heart is with you while all of you are going through this difficult time. I am praying for all of you and I love you're family dearly."
1 comment:
Peter and Vicki~~~I just want you to know that you are still in my prayers. I wish I could be closer to you so I could give you a great big hug. Just know that I care, and I am praying for you. Give Mattie a hug.
Kristi
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