The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
December 6, 2008
Quote of the day (Thanks Mommy!): Learn from yesterday, Live for today, Hope for tomorrow. Worry looks around, sorry looks back, and Faith looks up.
As is typical with Mattie's sleeping pattern now, Mattie was up from 2am until 6am today. However, Peter and I are getting better about how to react and attack the problem medicine wise. None the less, Peter and I are wiped out. So much so, that when we mobilized this morning I told Peter I had to go home for several hours today. I needed to get out of the PICU for my mental sanity. Mind you I haven't left the hospital since I got there, last sunday! I also had to lie down for several hours undisturbed by people and sounds. I told Peter I would only do this if he promised to go home tonight. So this is our agreement. I could see that I was getting physically ill today from exhaustion, and before it got worse, I needed to take a step back.
As I reflect on yesterday, I must say that our nurses have been incredibly supportive. It seems to me that most of the folks in the PICU know about Mattie's scan results yesterday. Perhaps this isn't true, maybe I just wear it on my face, but everyone has been lovely. In the past couple of days, Mattie has had three very talented, compassionate, and amazing nurses. I feel I couldn't continue writing without acknowledging Sarah Marshall, Katie, and Kathleen. We had Sarah Marshall three days in a row this week. I really hadn't had the opportunity to work with Sarah Marshall before, but I am so happy she was assigned to us. What an wonderful nurse. She is calm, sensitive, and SO efficient. She seemed to just know what we needed, and after three days of working with us she came to say goodbye and revealed to me that she is a cancer survivor. The pieces all started to fit, based on how I experienced and felt about her. She just got it! Mattie's nurse yesterday was Katie, and Katie too did everything to make Mattie comfortable. She had her hands full with her patient load, but she too couldn't do enough. Then last night we had Kathleen. I have come to know Kathleen, and I am so impressed by her. Last night, she was an absolute angel, amazingly sensitive, and she found a way to relate and talk with Mattie. She also has a talent for coming into our room at night without making a peep! I guess I am telling you about these women because they make a very bad situation, bearable.
I am writing this blog from home, and will post it early before the day is done. Since we are going single coverage tonight, I am not sure what the night holds for me. I am hoping that Mattie had a decent day and that Peter is managing. I haven't check in on them because I wanted to make a separation, and I know Peter would call me if there was a problem. Before I left the hospital, Dr. Sydner came by to talk with us. She is a special lady, and extremely supportive. I feel she knows what we are up against, and wants to help us in any way possible. I feel that Mattie's mood is far from stabilized and Dr. Synder knows I am not comfortable going home until we get to the bottom of the issue. The problem is there are SO many confounding variables to explain Mattie's behavior. You can pick one or all of them. Chemo, living in a PICU, surgery, pain medications, trauma, and the list goes on. We are slowly trying to attack each factor and it is our hope that by monday (once the effects of chemo lighten up) we will be able to determine if Mattie's aches and pains are chemo related. Right now he screams of pain from his head to toe. I assumed this was somatic pain from anxiety and trauma. I have been so focused on this overwhelming issue this week, that at times I forget we are in the hospital for chemo! That should give you some understanding of how pronounced the emotional issues have been!
I want to thank the Lee family ahead of time for dinner tonight! Thank you for taking care of us today. I want to use the rest of tonight's posting to share some of the lovely e-mails I received today. Your words, support, and insights mean the world to me, and on TOUGH days I cling to this amazing network of love and individuals that surround us.
My cousin and Godmother, Rosalinda, wrote me a lovely e-mail today. I am sharing a part of it with you today. Rosalinda wrote, "I applaud you for being there for Mattie when he needs you. My mom read Dr. Spock's child care books, who gave advice how to raise children, when raising me.... My grandmother told my mom to throw out those books and raise me from her heart. Mattie is your child and you know best." Raising a child from the heart is the line that got me. How beautiful and how true!
Liza (a SSSAS upper school mom, and now a friend) wrote, "Now more than ever, I believe that you have to trust your gut, your maternal instincts and your heart. To hell with the rest of us - doctors, close friends, acquaintances or anyone else. None of us could possibly know what we would do if we were in your shoes but I have a good idea that I probably would be doing the same thing as you. In fact, when I am scared or in a stressful situation, like you, I shiver uncontrollably and feel like I'm going to upchuck too. So if you and Pete think, no believe, that you have to handle Mattie in a certain way then by all means, do so. If anyone questions you, tell them to see Liza May - I'm small but mighty and I'll give them a piece of my mind. My heart is broken for you and as I sit here crying, I am wondering what you really need for any of us to do. I know we bring food and gifts or toys but is there anything else you need. How else can we support you? Heck, I would stand outside your door and tell people to go away if I had to. I could guarantee that your other new friends/moms from the senior class, Tamra and Kathryn, would do the same thing too. By my calculations, it looks like Mattie will have another scan on Dec. 26th but I'm not sure what the course of treatment is for the next three weeks. I can tell you though that I requested to provide Christmas Dinner to your family so my hope is to work with you to make it special. My dear sweet, Vicki, I wish that I could give you a hug and then find a magic wand to take this away for you. I'm praying for Mattie to stabliize and for strength to help you and Pete through this."
Christine (an SSSAS parent and good friend) wrote, "I have been keeping up with you via the blog. I don't know what to say after reading your entry last night. James and I are very saddened to hear the results of the latest CT scan. Despite this, we hold out hope that it's just a small step backward in a series of bigger steps forward. I am glad that you are trusting your gut when dealing with Mattie. You went through alot together before the cancer and you certainly know him best. You are an amazing mother--never forget that and never second-guess your parenting of Mattie."
Charlie (a former student, and now a close friend) wrote, "I have no idea why I feel this way, only that this "came to me" when I lit candles and said a prayer for Mattie last night. Something said, be strong, have faith, you will know the decision to add I and E was the right one because the tumors will be gone. This made no sense to me because I did not know the results of the scan last night when I lit Shabbos candles and added my prayers for Mattie's recovery. All I knew then was that the tumors had been removed by surgery, I did not read about the scan results until this morning since the blog was not up when I turned off my computer yesterday. As for the "wants" of the medical personnel regarding Mattie using the oral anti anxiety meds; there is a reason for the saying, "people in hell want ice water", they are not necessarily going to get what they want; you know Mattie best and you have to make the decisions based on that. Things are not always great when you do follow your instincts but reading back over earlier blogs, they are almost always far worse when you don't. So do what you feel is right and don't feel guilty over what the medical folks want you to do. You make intelligent, thoughtful decisions based on both data and feelings; go with it. Sometimes the choices are not good versus bad but only bad versus awful. Sending hugs, love and purrs from the Brown-Huber household"
Jen (my dear friend from Boston, we went to graduate school together at Boston College) wrote, "I wish everyday that I could take some of your pain away and give you a break from this ordeal you are going through. The mystery of an innocent child's suffering has confounded and angered people for all human history. I think your honesty regarding this ordeal is so courageous and has amazed me everytime. The last line of your blog
"All I can say is savor your days. Enjoy the tasks, enjoy the running around, enjoy the schedules and the hectic moments. All of these things are signs of a healthy and active life. I can appreciate that more now than ever before."
This gave me such pause and shamed me for any time I have squandered in life by complaining or wishing for more. I cannot believe I have wasted even one minute, when Mattie is fighting so hard for his... I keep praying for God's gift of healing. Vicki, I have used this prayer in times of desperate need; It has helped me to endure difficult situations that seemed to have no end or hope."
Prayer to Our Mother of Perpetual Help
O Mother of Perpetual Help! With the greatest of confidence I approach you to implore your aid. You have seen the wounds of your Son and His blood shed for our salvation. You know how He desires our salvation. Because of this, I kneel before you and beseech you to obtain for me the mercy of which I stand in such great need. 0 Mary, most amiable among women, obtain the favor I seek from Jesus, the source of all good. Here, state intention. 0 Mother of Perpetual Help, you desire our salvation more than we ourselves do. Your Son has given you to be our mother, and you have chosen for yourself the name: Mother of Perpetual Help. I do not trust in my own merits, but in your powerful intercession. I trust in your goodness and in your motherly love. For the love that you have for Jesus, your Son, and my Savior, for the love of the souls faithful to you, and for the sake of your love for my soul, obtain for me all the graces and favors I ask of you. Amen.
December 5, 2008
Thanks Charlie for the quote of the day. Charlie wrote, "It seems to me that you and Pete are past the need for patience and now are in the endurance stage. Hold on for this last surge before you finally reach the top and get to start down..." Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.
There is so much I want to say tonight and yet so many emotions all at the same time which makes it complicated to know where to start. But in a nutshell, I feel sad, depressed, and pretty much angry with our current situation! Just when you think a night can't get any worse, it does. Thursday night was horrific. Mattie got to sleep at around midnight, and then was up at 2am. He woke up agitated and started crying. For 45 minutes Peter and I tried to comfort him, hold him, and listen to him. After that point we realized we were getting no where. So based on a conversation I had with a psychiatrist that afternoon regarding Mattie's behavior, I decided to adopt a different technique last night. After the 45 minutes of coddling, Peter and I then moved into a more firm approach. An approach you would probably take with a toddler who is refusing to listen to you, or to use his/her words. You know, the silent treatment, where you are present in the room, but are giving the child no attention until he/she calms down and uses words. Well Peter and I held firm for 90, YES THAT IS RIGHT, 90 minutes of screaming and yelling. We would periodically check in with Mattie and tell him that he needed to calm down, that he would need to tell us what was bothering him, and then we would come to his side and talk with him. But that never happened. Instead, this 90 minute ordeal further set him over the edge. At which point, the resident on call came in to observe what was going on. She told us to comply with whatever Mattie was asking for, and not to provoke him or use verbals. So we did this for 30 minutes while being observed. Let me tell you that is a humbling experience at 4 something in the morning! Any case, after 30 minutes, Mattie never calmed down and we had to give him Ativan. By this point, my emotions were frayed and physically I felt worn out. The resident explained that we only want to use Ativan now periodically, and instead encourage him to use his oral anti-anxiety medication. Which is why they held off of giving him Ativan right away. Turns out the resident started talking to me about the 90 minute behavioral technique I used. I explained to her that it wouldn't have been something I would have done at the moment, but this was something the psychiatrist recommended. Setting boundardies and limitations and "being the parent." God knows why I listen to this stuff. I have to trust my gut, and know that I really do know Mattie better than the rest of these folks.
This morning, Mattie was headed to his CT scan. Debbi (our sedation nurse and angel) came in to help me with Mattie. She started the sedation process in Mattie's room, and then we wheeled him down to the CT scan room, where Mattie met up with Jey (his "big brother"). Dr. Toretsky and Linda also met us down in the room. The irony is it takes longer to set Mattie up for the scan, than the scan itself. The scan only took about 10 minutes! After the scan was over, Debbi took Mattie upstairs to his room, and Linda bought me a hot chocolate. Thanks Linda! I told Linda about some of my concerns about separating from Mattie right now. Our doctors are recommending that I take some time away from the hospital. I think that is wonderful advice in theory, but not realistic for a child who is already traumatized and finds comfort in having both of his parents around in the hospital. All advice is good in theory, but I truly believe until you have had a child sick with a life threatening illness and have had to walk in my shoes, you shouldn't judge me.
I went back upstairs to Mattie's room and he was coming out of being sedated which is always a painful process. Mattie usually comes out of the process very agitated and crying. My head is filled with the sounds of crying. In fact, it is my background music most days. Debbi could hear this crying down the hallway, so she came back in and gave Mattie more of a sedative to calm him down. That indeed helped, because he slept for a good part of the day. The sleeping during the day isn't great I know, because I will pay for it tonight, but Mattie is so sleep deprived that I take whatever sleep he can get. When Debbi came in she mentioned to me that Dr. Toretsky wanted Peter to be present when he gave us the results of the CT today. Just hearing that was an instant red flag in my book. I felt that perhaps he already knew the results of the scan and it wasn't good and he wanted to break it to both of us together. So for the rest of the day, I was fixated about this scan and the results. So much so, that I e-mailed Peter several times. Peter couldn't get off of work, so we agreed I would hear the results alone, and then call him.
So this afternoon, Dr. Toretsky pulls me out of Mattie's room. But instead of telling me the results, he calls the whole team into the meeting. So to me that was the kiss of death! But mind you I had already prepared myself for bad news when I heard that he wanted Peter present at the meeting. I am a quick study of people and situations, which is a gift and a curse. If you recall I am the one who wanted Mattie to be scanned. Why? Because, I kept hearing from multiple people that the time frame between surgeries and the last time Mattie had chemo was significant. I couldn't shake that comment everytime I heard it. So I felt for peace of mind, I had to do the scan. The scan of the lungs, because the lungs are the typical site for metastasis with osteosarcoma. The bottom line is it appears that Mattie has four lesions in his lungs. Two on the right side and two on the left side of his lungs. They are about 3mm in diameter. So right now they are small, and couldn't be removed through surgery. However, the doctors want to rescan Mattie three weeks from now to see if there are any changes in these lesions. If they get smaller, that would be a blessing and mean that the new chemo drugs (I/E) are working. If the lesions get bigger, then we have an even more significant problem on our hands because it means the new drugs aren't working. Well I bet you can imagine how I felt about hearing this news. I was sobbing and very upset. In fact, when I am in shock I start to shiver and feel like I am going to throw up. Some people cry hysterically, I on the other hand start physically shutting down. Part of me can't believe this is happening. Wasn't four bone tumors enough? How much can one family be tested? So many things were running through my head, but the main one was how on earth is Mattie going to deal with this?
So here is the deal. Mattie doesn't know about his lung lesions. We do not want to tell him right now, especially since he needs to be rescanned in three weeks. We will have a better idea of what we are dealing with then, and it doesn't pay to further stress him out when he is already very anxious and upset. Therefore, though I am posting this information on the blog, I expect our readers to respect our desire NOT to tell Mattie and NOT to talk about lung lesions in front of him.
Tonight, I feel weepy and just plain sad. I feel like my son's childhood has been striped away, I feel like I am losing out on the pleasure of being a parent and worse I may lose out on the possibility of having a child to raise in the future. This has caused me great sadness today. However, right after the news was told to me, I could hear Mattie screaming for me. So I had to quickly pull it together and I jumped right back into it with Mattie, as if nothing was wrong. Not an easy task in any sense of the imagination. I know the hospital staff offered that I could go to the chapel today after I heard the news, but my honest answer is what on earth for? Not that I am mad at God. Because who am I to question his decisions, but I don't have the spiritual energy to pray or to even focus on praying. Thank goodness I have the rest of you in my life who are helping me with this.
Mattie had a pretty good afternoon. Mattie even attended a science show in the PICU hallway. We learned how a boiled egg (without the shell) can be sucked into a glass bottle today and even how to microwave soap. Actually it was a great diversion, that helped me hold it together. Later in the day, we met up with Brandon (Mattie's big buddy) and his mom, Toni. Brandon and Toni have become our support system at the hospital. But Brandon's actual last day of chemo was today. He is now tumor free and headed home this weekend. This too is a loss on some level for us. Brandon is very fond of Mattie and he gave Mattie his Wall-E cardboard IV pole creation. Mattie always admired it, and now Mattie will always have a part of Brandon with him. That is very meaningful. Brandon even came to Mattie's room today to build with legos. We are so happy that Brandon is cured and headed home! Tonight as I type this, Mattie had a visit from his Uncle Chris (Peter's brother, who lives in Boston). Mattie seems to have been open to Brandon and Chris visiting this evening, and hope this continues to be a trend, because the last two + weeks have been very isolating.
In between dealing with all of this, I have also been trying to learn more about Medical PTSD or medical traumatic stress. I truly feel this is what Mattie is contending with. "Pediatric medical traumatic stress refers to a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. These responses may include symptoms of arousal, re-experiencing, and/or avoidance. They may vary in intensity, are related to the subjective experience of the event, and can become disruptive to functioning." If you are interested in learning more about medical trauma, you can visit this website: http://www.nctsn.org/nccts/nav.do?pid=typ_mt
We want to thank the Fortune family for a wonderful lunch. Mattie absolutely LOVED the Scooby Doo books. We read five of them already today. I also want to thank the Heddesheimer family for a great dinner. You all took care of us so well today. It is appreciated, and it took every ounce of energy I had to just eat something. Thanks Mommy and Daddy for working out the logistics for Mattie's new medical mattress delivery to our home today (the mattress is to prevent bed sores) and for bringing Mattie his CHEESE requests. Thanks Barbara and Don (Mattie's paternal grandparents) for the Scooby Doo puzzle and the Knex. Mattie built the knex car right away, and he used both of his hands quite well. Mattie also received a lovely package from Meghan (a medical resident) who has a friend who is a Top Gun in the Navy. That was a very thoughtful gift!
As we head into the night, I have no idea what Mattie has in store for us, but one thing I do know is my heart is heavy, my head is heavy, and I wonder what on earth we or Mattie have done to deserve this horrible disease. I realize there is no answer to this statement, but I long for our previous life and our normal days. All I can say is savor your days. Enjoy the tasks, enjoy the running around, enjoy the schedules and the hectic moments. All of these things are signs of a healthy and active life. I can appreciate that more now than ever before.
December 4, 2008
Quote of the day (Thanks Mommy!): My mom wrote, "In you and Peter's pursuit of excellence in the search for a cure for Mattie , therapies for a ideal recovery of the use of the three limbs affected by the disease and in trying to stabilize his mental state that has thrown him for a loop by the extreme trauma, stress and medications that he has been exposed to over the course of the last 4 months to help him through the curative process, your determination and strength of character, love and devotion come shining through. This quote is for you both."
To find what you seek in the road of life, the best proverb of all is that which says: Leave no stone unturned. ~ Edward Bulwer Lytton
Wednesday night wasn't a great night either. Mattie spent a great deal of it up, uncomfortable, and agitated. Peter and I landed up changing a lot of linens, as Mattie went to the bathroom several times in them. The amount of fluids he is intaking to flush out the chemo each night is overwhelming. So Peter and I started today with a major sleep deficit. It was funny at 6:30am, we finally got Mattie calmed down, and the nurse told us to go back to bed, but that wasn't about to happen. Peter had to get it moving to go to work, and I wouldn't let Peter leave before I could take a shower. Some people need coffee to start their day, I need a very hot shower.
The day to me was an absolute blur, and isolated blur. Mattie wouldn't let me leave the hospital room for the most part. Ann and Linda both came to visit with Mattie today, but he wasn't receptive to either of them. This of course worries me since he is very fond of these ladies in his life. Linda did bring in a computer today with a camera, and she was able to coordinate with Peter ahead of time, and basically Mattie was able to webcam Peter. Mattie thought it was very neat, and Linda thought of this idea because Mattie has been pining for Peter all week. Peter did wake Mattie up today before he left for work, and they said goodbye to each other. However, when Mattie woke up later in the morning, he was hysterical. He had no recollection that he spoke to Peter and hugged him before he left for work. Again, we needed to medicate Mattie this morning, but the goal today was to encourage Mattie to use his oral anti-anxiety medication rather than relying on the IV anxiety medication.
Ann came today and brought us a wonderful lunch. Ann also brought an incredible bag of tricks with her. Mattie and I did make Ann's prop plane today and he loved the gak like thing. That occupied Mattie for a good 15 minutes. Amazing! We will save the other goodies for another day, because I know they will capture his attention, and I need this kind of stuff in my bag of tricks. While Mattie was playing with this sparkly gak (which is like a slimy clay), I ate lunch. Ann brought me this wonderful vegetable sandwich. While I was eating the sandwich, I tasted some kind of herb in the sandwich that I have had before, and love. But it was like I was having amnesia. I couldn't remember what the herb was, or where I even had it before. This seems like such a trivial thing, but this bothered me for the next 30 minutes. I still can't remember what it is. I chalk up this memory lapse to intense sleep deprivation. Thank you Ann for coming today and for understanding Mattie's mood and behavior.
This afternoon Linda came back into Mattie's room. She had a hammer and a wood craft kit with her. Mattie needed the hammer for his wooden prop plane set, so he accepted Linda when she came in. They continued building together and while they were working together I rested for a bit on Mattie's bed (right next to him). Then Denise, Mattie's social worker came to visit, and at that point, I decided to leave the room for a few minutes to do the laundry (I never knew doing the laundry could be considered such a wonderful respite). In any case, while I was doing the laundry I met up with my parents. They told me about the wonderful time they had with Honey today. Honey is one of my supervisors at the George Washington University. Thank you Honey for intiating this invitation. I know my parents enjoyed getting to know you.
The 20 minute escape to the laundry room was good. I got a minute to just be, without hearing and meeting someone else's demands. Pretty soon thereafter Peter arrived at the hospital, and Mattie was very happy to see his dad. This evening I had the opportunity to meet the third child psychiatrist in the practice here. She was great. I found her very helpful and gave me some useful and helpful strategizes on how to deal with how Mattie relates to others in his life. The problem with Mattie's situation is it is hard to determine what issue lead to the anxiety. There are so many events and issues that could have produced the anxiety. But the more I was talking to the doctor, the more I realize that Mattie too has signs of depression. He is irritable and definitely shows a lack of interest in most activities. This saddens me because Mattie has never been a kid who got bored easily.
As we head into friday, Dr. Toretsky arranged for Mattie to get a chest CT. Why this? Well I am concerned about more metastasis. The next likely place the tumor cells would travel is the lungs, and Mattie has technically been off of chemo for quite some time between surgeries. So I am worried, and can't have peace of mind until such a scan is performed. I told this to Dr. Toretsky on monday, and he immediately took care of this issue. However, I am now worried. Do I want the result, can I handle the result? Hopefully God has kept Mattie safe during this time off chemo, in order to give him a fighting chance.
Today I received a lovely e-mail from Debbie Pollak, Mattie's art teacher at SSSAS and huge Mattie supporter. For the first graders community service project this year, Debbie had all the first graders look at Mattie's "Mr. Sun" painting and she had them complete an open ended sentence. The responses were priceless, special, and touching. I am so happy Debbie shared them with me. This is a special group of children, under the direction of a creative and loving teacher.
Debbie wrote the following to Mattie: "Dear Mattie, I showed your painting to all of your first grade classmates. Here are some messages to tell you how your painting makes them feel. They are writing you letters too. I will get them to the post office at the end of the day so Mommy and Daddy can give them to you as soon as they arrive at your house. I love you, Ms. Pollak"
All of the children completed the phrase….. “When I look at Mattie’s painting, I feel…….
Ms. Flannigan's class:
Kelly… loving, very colorful and joyful.
Cameron…makes me feel really, really happy and really good.
Reid…colorful, joyful and good.
Nikki…makes me feel bright and kind.
Kate…dramatic, joyful and loving.
Katherine…loving and warm.
Eliza… happy and beautiful.
Andrew…colorful and loving and generous.
Sydney…joyful, happy, warm, generous and kind.
Jessica…bright and excited.
Paul…me feel happy and warm.
Cade ….nice, good, and joyful.
Nick… joyful and hot.
Mya… colorful and beautiful.
Elizabeth…like having happy tears and very loving.
Tyson…happy, generous and glorious.
Ms. Fisk's class
This class had to finish this sentence……When I see Mattie’s painting, I feel like……
Missy…..the painting is great.
Caroline…I want to go outside.
Luke…that I want to20paint like you.
Claire…I am looking at great beauty.
Woods…playing WII with you.
Charlotte… I want to paint a sun too.
Darius…I wish I could paint just like you did.
Peter…I want to draw.Jordon..I want to play with you.
Tyler…I want to play with you. I can help you play.
William…going to the beach so I can feel the warmth of the sun.
Alexandra: you are a great painter.
Maddy…I am speechless.
Beth.. it makes me want to see you.
Sydney…like my heart is singing.
Ms. Haughton's class
Cedric…Your painting looks awewome like it is in a real art museum.
Mason…Your painting looks brighter than the sun.
Charlotte…I love the colors you chose for your painting.
Nicholas… Your painting is excellent.
Tori…I love your painting sooooooo much.
Xander… Your painting is PERFECT!
Sydney…Your painting looks so amazing.
Luke…Your painting looks so good, that I wish I could paint as well as you did.
Hanna… Your Mr. Sun painting looks really real.
Bennet…I think your painting looks very creative.
Liliana..Your painting looks so good that it makes me want to cry happy tears.
Luke…The paintng makes me feel warm like the sun.
Frederick…I think your painting looks shinning.
Latric… Your painting looks extra special.
Florence…Your painting makes me feel very happy.
Fleming…Your painting looks beautiful.
Ms. Knowles' class
The class finished the sentence: I love your painting because it....
Catherine…is soooooo beautiful.
Claire…makes me want to go to the beach.
Charles…shows what a good painter you are. I wish I could be as good at painting as you are.
Jay… is beautiful.
Kazu…is as bright as the sun.
Shivani…. Makes my day.
Bridget..inspires me to do a painting.
Abigail…makes me happy just to look at it.
Alice…is simply lovely.
Brian…is so colorful.
Lily…makes me wish you were here with us.
CJ…is so bright and cheerful.
Killian…has so many colors in it.
Cavin Reed…is so glimmering on this gloomy day.
We want to thank the Fortune family tonight for a lovely dinner. It was very tasty and I truly appreciate the chocolates, but most importantly the Trauma book (Trauma through a child's eyes) you bought for me. I very much look forward to reading through it. Mattie loves the Scooby Snacks! Thank you! I want to share a prayer we received today from Dr. Aruna Nataranjan. Dr. Nataranjan is a PICU intensivist, and helped us tremendously during Mattie's recovery from his second major surgery. Our family has grown very fond of her. She is so competent and compassionate.
Saint Theresa's Prayer
May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith,
May you use those gifts that you have received, and pass
on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.
At the moment, as I type this blog, Mattie is sitting up in his wheelchair (under the twinkling Christmas lights in our room), and watching the movie, The Wild. We have never seen it before, but Mattie is glued. It is about animals escaping from the zoo. A concept we thoroughly can relate to. Please, please, please think positive thoughts tomorrow as Mattie gets his CT scan at 10am!
December 3, 2008
Quote of the day (Thanks Daddy!) which my dad felt applied to Peter and I: "Winners are not those who never fail but those who never quit." ~ Edwin Louis Cole
Tuesday night was a night to remember. Mattie was up and down all night, but by 4:15am, we weren't prepared for what hit us. Mattie woke up disoriented and screaming. The screaming and crying then became uncontrollable. Mattie started to flail his useable leg. Peter and I started looking at each other, and could quickly see after trying to reason with Mattie (which was impossible) that we needed medication right away. So Mattie's nurse brought in versed, which is a quick acting anti-anxiety medication. It is fast acting but its effects don't last long. By 6:30am, we were right back in the hysterical, irrational, and angry state. Again we gave him versed. But by this time, Peter and I were besides ourselves. We both feel like the walking wounded and now the littlest things set us off. At around 7:30am I sent an e-mail to Dr. Toretsky and then Peter called him on his cell phone. Dr. Toretsky was very responsive and came up to see us right away. Dr. Toretsky recommended that Mattie get Ativan, a more long lasting anti-anxiety medication today. Ativan was administered in Mattie's central line at 9am. By 9:15am, things started to change for the better. Ativan is my new found hero. Mind you at low dosages Ativan doesn't work for Mattie. It makes him hyper and agitated, but at higher dosages it works wonders. I could see Mattie physically and emotionally calming down. He engaged in play with me, spoke to me, and was very coherent and rational. He also was wide awake the whole day, and wanted to do things, unlike the state he was in on tuesday.
Ativan is not a long term solution, and Mattie is being transitioned to oral anti-anxiety medication. Seeing Ativan work so effectively only further confirms to me that Mattie does indeed have anxiety and it is not some simplistic behavioral/discipline problem. The medication is so needed to stabilize his mood, and then it is my hope that other therapeutic modalities can be used to help Mattie through this so that he can continue to receive chemo treatment successful. I contacted several of my colleagues today to get their perspective on Mattie's situation and the community resources I could turn to. As many of you know Mattie isn't very compliant with oral medication. So when the hospital hands me the crushed anti-anxiety medication I now stick it in Dunkin Hines vanilla frosting. Thanks Mommy and Daddy for bringing the frosting over today. Frosting is so thick and sweet, you can conceal anything in it. The prior night, I used our trusty friend, Karo syrup to administer the medication (needless to say Mattie had great out put today!), but because that is a laxative, I can't use this consistently, which is why I came up with the idea of using frosting.
Mattie and I built a lego house today. We literally worked on it from 9:15am until 5pm. It was a full day project, but one he was committed to and focused upon. Also in the midst of what we are dealing with we are trying to get in the Christmas spirit. Linda brought us a mini tree with lights and decorations yesterday afternoon, and last night Mattie got out of bed into his wheelchair and started decorating. He was motivated, and we even strung lights from the ceiling of the room.
This afternoon we had a visit from Alison. Alison brought some incredible hands on gifts. They all positively stimulated his tactile senses. Mattie also loves the Santa figure magnet that is now on his wheelchair. We also appreciated lunch. Mattie particularly loved the pizza. He ate several pieces! Alison joined us in building the lego house, and Mattie enjoyed directing Alison and I around. Thank you Alison for sharing part of your afternoon with us.
Linda also came by and she continued the lego project with Mattie. It took three adults and one child to build this house. But what a beautiful house it is! Linda also brought Mattie some fantastic balloons from the Winter Wonderland party that the hospital had today for the children. Later in the afternoon, Mattie had a visit from Susan D. (his school counselor). Susan bestowed many wonderful gifts on Mattie, such as an adorable Santa hat with snowmen on it, a wonderful vanilla shake, and miniature christmas lights that Mattie happily put on his lego house. It was the perfect gift to match the house. We also want to thank the SSSAS first grade class that created such beautiful Christmas cards for Mattie. They are very thoughtful and meaningful. Thanks Susan for your visit, as always my parents enjoyed chatting with you too.
Mattie also was visited by Anna, his PT, today as well as his "big brother" Jey (ie Mattie's favorite CT technician). Both Anna and Jey were impressed with Mattie's use of his hands and how he uses his right hand and left leg to get things done. Mattie was very motivated to play today, and to me this was a positive sign. He still refuses talking and having most people in his room, but I think those things can be worked on, whereas the hysteria and irrationality we experienced lately were beyond our control and reason.
This evening at 6pm, Dr. Toretsky had a meeting with Peter, myself, the residents, and our nurses. He wanted to coordinate Mattie's care, with regard to the administration of anxiety medication. We also talked about ways to structure Mattie's day to give him a sense of security and routine. It us our hope that this structure will also ease the anxieties of being in his current situation. It was a productive meeting.
Thank you Beth E. for a wonderful dinner tonight. Your crab cakes were delicious and your brownies provided me fuel to write the blog! We look forward to Mr. Betafish joining our life in the near future. Thank you for such a thoughtful gift. Tonight we are quite tired. In fact, I am falling asleep as I am typing this. At the moment, Mattie is getting infused for the third night with chemo. Interestingly enough this chemo is clear in color, like water. It lulls you into a false sense of security that Mattie is only receiving fluids and not medication. Whereas some of the other chemo drugs Mattie has taken are bright red and bright yellow. We are signing off tonight in hopes of getting a decent night of sleep. I at least feel comforted that a plan is in place to deal with Mattie's emotional needs. But under these trying circumstances it is hard to think clearly, to stay optimistic, and not to snap at one another. But we continue. As my friend Kim (Mattie's preschool director) says, "continue, continue... it is a word filled with HOPE."
December 2, 2008
Mattie held his own last night during chemo. He was still up when Peter and I went to sleep. He went to bed while watching a Scooby Doo video. He has trouble relaxing and shutting down, more so these days than ever before. Mattie was up several times during the night because he had to go to the bathroom, not unusual considering the quantity of fluid being pumped into him. As one point during the night, Mattie did not make it to the bathroom in time, and Peter and I were lifting him with the help of Melba (Mattie's nurse) and trying to place clean sheets under him. Between the bathroom runs and vital checks, it felt like a very busy night.
This morning Mattie was resting peacefully, but I had to wake him up since the hospital was changing all the mattresses in the PICU. I did not want the staff to move Mattie, so I woke him up and got him cleaned up and transferred into the wheelchair. Mattie did not take well to being woken up and this started a chain of other reactions. While in the wheelchair I tried to offer Mattie different activites to do together. I even asked him if he wanted to visit with Brandon or go to the childlife playroom. He refused all ideas. It was then that he asked where Peter was. When he found out that Peter left early for work, all hell broke lose. Mattie started to scream, "I want my Daddy. Daddy, Daddy, Daddy!" At first I understood Mattie's desire to be with Peter. But the more hysterical Mattie became, the more I was unable to reason and rationalize with him. I tried every thing possible. I listened, I empathetized, and then I explained that when Daddy can't be there for him, I am. I even called Peter at work three times during the day to let Mattie talk with him and they exchanged two e-mails. I thought we would break through this fixation on Peter by mid day, but no such luck. The issue became more pronounced as the day wore on. By noon, my parents came to visit and they couldn't get over what they were seeing. By 12:15pm, I couldn't take the screaming, crying, and the irrational behavior. Mattie was also not allowing medical staff into the room. So I went out to the nurses' desk and asked that Mattie be given versed, which is an anti-anxiety medication that works instantenously, but its effects only last for about 20-30 minutes. The medication calmed him down a bit, he was still upset, but not looking like he was going to jump out of his chair or hitting me with his leg.
Soon thereafter, Grace (my friend and RCC mom) came to visit me and brought us a wonderful lunch. Mattie loves the Scooby Doo pasta. It is his meal of choice these days. Also Mattie LOVES the snowman nightlight and wonderful books, not to mention the beautiful holiday cookies. Thanks Grace for visiting, and I wish we had an opportunity to chat today.
But by 2:15pm, Mattie was screaming again in full force. Again, I asked for the medication to calm him down. During the afternoon, I kept growing more and more concerned with the behavior I have been observing and experiencing with Mattie over the past 12 days. But today's behavior disturbed me because I could no longer console and comfort Mattie. In addition, I couldn't rationalize with him. So at which point, I went out to see when our psych consult was coming to visit us. The residents gave me some excuse that they couldn't get a hold of the psychiatrist. It was at that point, I started yelling. I told them this wasn't acceptable. That I had been waiting all day for this doctor, and if they can't get someone from the hospital to help me, I was going to find someone on the outside. That seemed to get results. After my tirade, I went back to the room, and in between holding Mattie and dealing with his fits, I logged onto the George Washington University's library database system. I have learned when all else fails, research the problem. So I started using all sorts of keywords, until I found something that intrigued me because it described Mattie's situation to a T. It is "medical PTSD." I have felt for a week now that Mattie has PTSD like symptoms, but I was unaware that one can develop PTSD from a medical procedure. It certainly makes sense, but I found reading the abstracts fascinating. In addition, parents of children with cancer can also get PTSD, you don't have to personally experience the traumatic event to be able to get PTSD. It can be your emotional reaction to observing the traumatic event. Not that this describes me, but I found it interesting what a profound impact cancer can have psychologically on a patient and his/her caregivers.
At around 3pm today, my friend Margaret (Mattie's first preschool teacher) came to visit me. She brought hot teas and some delicious cakes. Mattie later enjoyed the vanilla cake. It actually made his afternoon. Which wasn't easy to do! Margaret and I were having a nice conversation, but Mattie's doctor wanted to talk with me, so our visit was very short. Thank you for visiting and for listening.
I spoke with Dr. Toretsky several times today. I am sure by now the hospital staff thinks I am unstable. I think when you are caring for someone who is affected so deeply emotionally, it is almost impossible for it not to take its toll out on you. None the less, when I spoke with Dr. Toretsky today he did reveal to me that Mattie's emotional reaction is considered on the extreme end of the spectrum based on all the other osteosarcoma patients he has treated. Part of me explains this reaction to the fact that Mattie had four tumor sites, unlike the typical one tumor site most children deal with. Of course I realize each person is unique, and what can impact one person a certain way, produces a totally different reaction in another. Any case, Dr. Toretsky has been very supportive of our need to deal with Mattie's acute anxiety.
I also had the opportunity to talk with Mattie's social worker today. As I was talking to Denise I began to put two and two together. If Mattie is really dealing with trauma, then being around the people he trusts (myself and Peter) is not that unusual. Certainly he would cling to us dearly. As we kept on talking I then realized a technique used by one of Mattie's nurses was more harmful than beneficial. You may recall that I mentioned a nurse came in yesterday and basically told Mattie not to yell, to stop screaming, to calm down, to focus on his sound machine, and not to yell until she came back into the room. While doing this, I was removed into the hallway. At the time, I did it, but upon further reflection I realize how detrimental all of this was to Mattie. In fact, last night Mattie told me he was frightened when this nurse came in and gave him a talking to. I am no trauma expert in any sense of the matter, but it seems like trauma 101 that if you remove the safety objects or people for the trauma survivor, then this in a way could exacerbate the trauma.
I had the opportunity to meet with a psychiatrist today who got to see Mattie in full form. In order for me to talk with the doctor, I had to hold Mattie's ears closed and wrap his head in my shoulder. The psychiatrist understood and observed my concerns and agreed that prescribing Mattie anti-anxiety medication is a good way to proceed in the short term. However, like we both know that will not get to the heart of the issue. But I feel unless we stabilize his behavior, he won't be able to comply with treatment, he won't be able to participate in physical and occupational therapies, and certainly he will sink further into social isolation. I am very conservative when it comes to psychotropic medications, but in this instance, this is in Mattie's best interest. The psychiatrist told me that most parents under these circumstances would have cracked along time ago, and Dr. Toretsky told me yesterday that we was amazed with the way I handled Mattie during one of his tirades. So much so he thought I deserved a hug.
So tonight the issue is to convince Mattie to take this anti-anxiety medication, which is administered orally. He is not very compliant with taking oral medication. Toward the end of the evening Bob came to visit Mattie. Bob came to remove Mattie's dressing completely on his right leg, and partially on his left arm. We gave Mattie some medicine to manage this, but Bob and Mattie had their usual lively conversation, and Mattie did not treat Bob like I observed Mattie treating everyone else today. In fact, Mattie told Bob what Sparky's (Mattie's central line) middle name was today. A high honor. In return Bob told only Mattie his middle name. It was a very cute and tender dialogue.
I received a lovely e-mail today from Tad. Tad is Kazu's dad (Mattie's friend from SSSAS). Tad is incredibly supportive of me throughout this time, and today he wrote, "Do not listen to that doctor's indications on Mattie's fear cycle. Cancer/disease and the related physical and emotional "battles" are more than enough to create fear in Mattie. As you have observed so often, Mattie is far more sensitive to what is going on than many give him credit for, particularly those who are not with him 24 hours a day. Contrary to the doctor's hypothesis, you are the source of Mattie's security, and the target for whatever fears Mattie projects. As the source of comfort, with who else would he share his daily and innermost fears? As with all such things, it is a great burden, but also a mark of great love."
After the day I have had, I feel frazzled from my head to my toes. I am sure Peter isn't far behind, because I kept calling and e-mailing him today. Amazing how he got any work done. I frankly don't know how we will manage with the second administration of chemo which is happening as I type this. Erin, our nurse, told us that one of the bottles of chemo Mattie is receiving tonight is $15,000 alone. Mind you he is receiving five bottles of this stuff this week alone. Got to love it, no? But in the midst of all this chaos, we had a delightfully tasty dinner thanks to the Arends family. The cheesecakes were the envy of the PICU. My hope for the next day or so is that Mattie complies to take his medicine and that he continues to do well on his new chemo regimen. We are so distracted and focused on the emotional things, that we can't even process what is going on chemo wise.
I end tonight by thanking Linda and the childlife interns today. Linda brought a whole bunch of Christmas things to Mattie's room in hopes of cheering him up and getting him to participate in decorating. So far, he isn't interested, but I am hoping with time this week he will change his mind. The interns today helped me do all our laundry, since Mattie wouldn't allow me out of the room to get this simple task done (a task that I happen to like because it gives me a break from the usual room routine).
December 1, 2008
Message of the day (Thanks Charlie!):
Charlie wrote, "This is how those of us who read the blog see Mattie:"
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve
"And what we all pray for:"
Expect to have hope rekindled. Expect your prayers to be answered in wondrous ways. The dry seasons in life do not last. The spring rains will come again. ~ Sarah Ban Breathnach
There is so much to report, I don't even know where to begin. I will start by telling you about sunday night. Mattie had an awful night of sleep. Basically he kept me up with his night terrors until 5:30am. At which point, I awoke Peter and told him he needed to go downstairs and spend the next two hours with Mattie so I could get two hours of sleep. I felt bad doing this to Peter but if I did not get some sleep, I knew I couldn't function today. I tried to encourage Mattie to take pain medicine last night, but he is refusing all oral pain medications now. I think he understands the connection between the medicines and his night terrors.
Mattie and I got dressed and packed up to go to the hospital today. Because his wheelchair is SO bulky, I couldn't take much with me to the hospital, the rest of the things we needed went into Peter's car. Getting Mattie to the hospital today was a production and fortunately my parents helped by dropping us off at the hospital door so we could just roll right on in. We went to the clinic today so Mattie could have his check up first before checking into the hospital. We waited in the clinic from 11am until 2pm. While we were waiting to see Dr. Synder, Mattie played with Jenny. Jenny and Mattie are building a Christmas house. While they were doing that, I went to register Mattie for admission into the hospital for treatment. This is a task that truly upsets me each time. It is such a bureaucratic waste of time and energy. Though I practically know each person in admissions now, every time Mattie comes to the hospital I have to register him. Really this would be fine if we weren't such repeat customers. But I really feel cancer patients should have a streamlined admissions process. As a parent of a child with cancer, I am so worried about everything, should I be worried about the paper work too? I got so insensed by the process (mind you I have done it lots of time before, but the more tired I get, the less patience I have for this kind of busy work) that I called our patient advocate, Julie Andrews. I will see what Julie can do about this, because in my book I want to help myself and other families dealing with this additional stressor.
When I got back to the clinic, I found that Mattie was playing nicely with Jenny, until a nurse came over and told Mattie she had to check his weight. She wanted to put him on a bed and weigh him that way. As soon as Mattie heard this he instantaneously got scared and cried uncontrollably. Then started screaming that no one was allowing him to have lunch. I negotiated with him to pick a time the nurse could come back and weigh him. He selected 20 minutes and during that time my parents went around campus and brought back a mini cheese pizza for Mattie (which is what he wanted). I had the distinct feeling that things were going to get ugly before they were going to get better today. Twenty minutes later, the nurse and Drs. Toretsky and Synder decended upon Mattie. The whole next episode was painful to watch, much less to experience. Dr. Synder wheeled Mattie back to an exam room, and Mattie was clinging to me. So picture me walking sideways, with his arms wrapped around my neck screaming. When we got to the exam room, we tried to explain what the doctors needed to do and why he needed to be weighed. The nurse was going to pick Mattie up and place him in the bed, and I basically told her not to touch him. I then asked Mattie to comply and stand up himself and walk to the bed to be weighed (they can weigh you in a bed, because they can zero out the bed, and when you sit on it, it can calculate your weight). Mattie went along with this, but he really did not want to sit on the bed, much less lie down on the bed for this process. During this entire time, Mattie was absolutely hysterical, wouldn't talk to anyone but me, and was inconsolable. It was a very real fear for him, not the act of a child being non-compliant or testing the waters. All the doctors left the room, because Mattie demanded they leave, and the nurse and myself were left in the room. However, Mattie just got so upset with the idea of sitting on a hospital bed, that it was almost too much to handle. So finally I asked for a scale to be brought into the room, because Mattie would be happier doing it this way rather than being confined to a bed. We finally got his weight this way. Throughout this ordeal, my parents and my friend Lorraine were in the clinic watching and hearing this emotional meltdown through the door. The interesting part is that both Drs. Toretsky and Synder got to see a glimpse into the kind of week Peter and I have been dealing with at home. A week filled with anxieties, fear, and emotional outbursts. Both of them commended me on my patience, and then said they couldn't have handled Mattie the way I did. They also then started mobilizing and finding ways to help us through these issues with Mattie, because at this rate, I won't be able to sustain Mattie's care. This was blatantly obvious today when they saw his reaction to a simple request. I have been complaining all week about Mattie's fears and anxieties, but I guess seeing the behaviors unfold in front of you makes a lasting impression.
We then moved Mattie upstairs to the PICU. Mattie was greeted by Linda, Miki (his nurse) and Jane (one of Mattie's PICU nurses). Linda gave Mattie a remote control airplane and was able to encourage Mattie to go to the playroom. Mattie also met up with Brandon (his big buddy) today in the playroom and they built some legos together. While Mattie was gone for a little while, I ate a nice lunch. I thank the Bentsen family for thinking of me. I loved the dumplings and soup. It hit the spot! Thank you for also dropping off two wonderful gifts for Mattie. I can't wait to do the gingerbread train with him. While eating I spoke with Lorraine and my mom and I told them if I should survive this process, I plan on starting to do things I enjoy, rather than what pleases others or what others feel I should be doing. This is a big revelation for me! Thank you Lorraine for your visit today. Mattie loved the cupcakes and the chips and Peter and Mattie played tic tac toe together tonight!
Mattie continued to be agitated for most of the afternoon. He had a meltdown about the type of legos I brought to the hospital, and thankfully my parents ran back home for me to bring the type of lego he wanted. Dr. Toretsky then paid me several visits in Mattie's room. The first time he visited Mattie was crying and screaming, and the second time, Mattie was asleep, most likely from all of his tantrums. Jane (Mattie's PICU nurse) at one point came in and told Mattie that he needed to stop screaming. That no one can help him with all the screaming. She told him to calm down, focus on our sound machine, and take a deep breath. They had me waiting in the hallway while all of this was taking place. Mattie did quiet down. So some things were concluded today. One, Mattie isn't really experiencing pain, he is dealing with anxiety (which is what I have been saying all along), and two, Dr. Toretsky explained that Mattie has set up a bad cycle with me. Because I was primarily responsible for his care at home and did not have a whole hospital staff at my disposal, Mattie learned how to act in such a way that would guarentee my 100% attention. I am sure that wasn't an easy message for Dr. Toretsky to deliver to me, and frankly I have mixed feelings about what he is saying. Part of me agrees, certainly my behavior impacts Mattie's. However, from a parent's perspective when your child is in fear, can't sleep, has gone through so many traumatic events, it is hard not to want to comfort him. At first I felt bad, but as I have been thinking about it, I use Sandra's (our in home nurse) acronym, WTF!? I am doing the best I can do, and I know Mattie's fears are real and I did the best I could to keep him safe, secure, and protected. Tomorrow a psychiatrist is coming up to talk with us. To evaluate the situation. Mainly because I want to help Mattie get through his fears and anxieties, I am willing to deal with this and strategize with this doctor. But I am in no mood at this point to be hearing how I helped contribute to Mattie's emotional condition.
This evening Mattie had a visit from Zachary (his close preschool buddy) and his mom, Katie. I thought Mattie was going to throw Zachary out of the room, but instead Mattie was thrilled to see him. Zachary and Mattie started doing legos together and Zachary was at times acting like Mattie's hands when Mattie couldn't do something. It was amazing to see. Mattie and Zachary have a special connection that I suppose even such an illness can't break. Zachary just rises to the occasion. It perked Mattie up and Mattie even ate a chicken nugget during the visit. After a day we had, it was incredible to see this transformation. Mind you when Katie and Zachary arrived I was sitting outside the room, giving Mattie space. Thank you Katie for a wonderful dinner and a nice chat!
Mattie's chemo began tonight at 9pm. Mattie needed a whole day of hydration in order to meet the criteria to start chemo. Mattie already had his Etoposide administered tonight, and managed that well. He is currently getting an Ifosfamide infusion. After the four hour infusion, Mattie is administered Mesna. Which basically rescues his bladder from damage from the Ifosfamide. Melba, Mattie's nurse, has already given me a heads up that Mesna can add to the nausea.
I learned today that my friend Sara has a family member who is a reiki practitioner. Sara explained to me that reiki is a form of psychic healing. She said you can do it in person or from a distance. When someone does reiki from a distance they just keep the people in mind that they want to send healing powers to. Thank you Juliet for doing this for our family. All positive energy is needed and appreciated.
I want to end tonight on a positive note. Jenny let me know that one of Mattie's pottery sculptures was entered into an art show, sponsored by Tracy's Kids. Tracy is an art therapist who started the art therapy program at Georgetown. Mattie's sculpture will be featured at the Carroll Square Gallery from December 1 until January 2. The gallery is located at 975 F Street, NW. I am not sure how many 6 year olds get their art featured at a gallery, but this was something that brought a huge smile to my face.
November 30, 2008
Quote of the day (Thanks Daddy!): "Making the decision to have a child---it's momentous. It is to decide forever to have your heart go walking outside your body." ~ Elizabeth Stone
What a great quote. Maybe this is why Peter and I both feel like you might as well have diagnosed us with cancer too, our hearts are breaking!
I am happy to report that Mattie had a good night of sleep on saturday. He literally started getting sleepy at 11pm, and he was so out of it, that I cleaned him up, cut his nails, and put lotion on him. All the sensory things he would absolutely HATE if he were very awake. At midnight, he was completely sleeping, and he did not make a peep until 9:30am. At first I was concerned that the new pain medication was too intense for Mattie, but he takes it during the day as well, and he is always wide awake. It was glorious to see Mattie sleeping and not waking up in pain or frightened. However, throughout the day he complained of having a lot of pain from his head to his toes. I figure this is probably natural since we took him off his fentanyl transdermal patch.
Mattie had two visitors today. The first one was Sandra, our in home nurse. Mattie did not give Sandra a very good greeting. He was screaming at her and demanded she leave. Prior to her arrival, it was such a busy morning meeting Mattie's demands, so much so that I was still in my pajamas when Sandra came over. Peter isn't feeling 100% today either, but was doing some things for work in the morning, and even dropped Patches back off at the animal clinic since we will be in the hospital all week along and we don't want to be worried about her medical needs. Sandra examined Mattie's ulcer today, and right after that Mattie got super agitated and wanted her out of our home. Sandra did not comply but instead started talking to me about what things I need to do in the hospital next week for Mattie. She is very supportive and wants to help us, but I am not sure how to say this, when I am busy with Mattie and dealing with his crying and screaming, this is not a good time to talk with me.
Mattie expressed for the first time today his desire to get out of the house. He hasn't wanted to leave all week. Today he wanted to get a few toys before heading back to the hospital. I broke it to him today that he is going back tomorrow. He wasn't happy about it, but I told him it wasn't for surgery it was for more medicine. He looked at me confused. He knows all the tumors have been removed, so I guess in his mind what else are we fighting?! I explained to him that he has clever bone bugs. That even though the bone bug homes and most of the bugs have been removed, there are a few that are sneaky and can hide in different parts of his body (other than the parts operated on). In order to wipe these bugs out completely, he will need more medicine. That explanation seemed to suffice. But Mattie was focused on going to Target today to find things to bring to the hospital!
At 2pm, Dan, Mattie's in home physical therapist came to visit. Dan was very patient with Mattie, and seems to be able to get Mattie to do his exercises even though Mattie is somewhat scared and agitated by them. Dan comes with a big box of baseball cards and uses them as a reward when Mattie complies. Mattie came away with 13 cards in total today! Before Dan left I asked him if all his cancer patients are like Mattie. His response was a good one. He basically said that the children he works with who have cancer are similar. The littlest things can set them off. My analogy is a rubber band. If Mattie were a rubber band, he would then be stretched out as far as he could go. The more you touch the rubber band in this state, the more fragile it gets, and even the slightest touch (sounds, etc) can cause him to break. Or as Mattie says, "I am going to blow my stack." Unfortunately it doesn't take much for Mattie to blow his stack now a days. Mind you I think all of Mattie's emotional reactions are SO understandable and very NORMAL. But you also need to understand Peter and I are only human, and there is so much of this one can take day in and day out. Particularly what is even more upsetting is what sets Mattie off is if Peter and I move from Mattie's side or God forbid leave the room he is in.
After Dan left, Mattie got dressed up and we all went out on a shopping adventure. My parents joined us. Going out with Mattie now is an experience because it involves a HEAVY wheelchair and many transfers from one seat to another. We first stopped at Rite Aide. Don't ask, but this pharmacy has Mattie's favorite toy metal cars. We transferred Mattie several times today from his wheelchair to the car seat. I think we have mastered this. After Rite Aide, we went to Target, where Mattie got things on his list that he really wanted, such as Scooby Doo graham cracker snacks (which he loves and I can only find them at Target), candy canes, flavored ices, and of course legos!
We got home, we all had dinner together, and now we are slowly getting ready for monday. Mattie had a dressing change of his central line tonight which is a total production. Especially since he is hyper sensitive to all touches now. You should see how horrific it is to pull a sticky bandage off of a child who doesn't want to be touched. Who ever came up with this process should be SHOT. Or better yet should have to perform this on Mattie on a weekly basis. At the moment (9:30pm), Mattie is in a bad mood, complaining of pain all over his body, says he has a headache, and wants our 100% attention.
As you know tomorrow we head to the hospital for chemo. We did decide to go with the additional drugs, Ifosfamide and Etoposide. However, I thought you would like to hear the timing of these gems. The administration of these drugs is over five days. Unlike any of his prior chemos. Ifosfamide is administered for fours hours every day for five days, and Etoposide is administered for an hour every day for five days. After all of this, then Mattie stays in the hospital an additional day for hydration, and just like Cisplatin and Doxorubicin, he will become neutropenic several days thereafter. I don't know about you, but even under the best circumstances (what I mean is no bad side effects), this regimen sounds nasty.
I received a lovely e-mail today from my friend, Susan S. Susan wrote, "It has been on my mind for awhile to do this for you, so today I did it. You have so many wonderful quotes and stories on your blog and while they are good for a day or the week they then are lost into the annals of history so I thought what if they were in a form that you would be able to access more easily?? I know you have received many great books of hope and quotes but these are the ones people sent to you specifically for your family. Anyway I went through (and hopefully got them all) your quotes, stories etc. and put them into one word document so you can read it whenever you want. As the quotes roll in I'll add them to the book." Thank you Susan for this lovely gift. I read over the quotes and stories today, and I find them so lovely to have in one concise place. Thank you for taking the time to do this for us.On the electronic front, we want to thank Karen, Brian Boru, Ms. Pollak, and Cousin Donna for all the wonderful e-mails and e-cards. In addition, we want to thank Brian Boru (our feline friend) for his care package filled with holiday stamps, a Scooby Doo activity book, stickers, and wonderful lollypops. We think you are quite a cat!
We also want to thank Ashley and Kathy (two wonderful RCC moms) for spearheading a prayer service for Mattie on December 8th. I have posted this information on top of our blog. Our family is deeply moved by the planning of this event. The specifics are: Prayer Service for The Brown Family
Monday, December 8th at 7pm
Church of the Resurrection - Parish Hall
2280 N Beauregard St. Alexandria, VA 22311
I end tonight with a Prayer of Saint Patrick that my good friend, Jen, in Boston sent me today. Thank you Jen!
Christ be with me, Christ within me, Christ behind me, Christ before me, Christ beside me, Christ to win me, Christ to comfort and restore me. Christ beneath me, Christ above me, Christ in quiet, and in danger, Christ in hearts of all that love me, Christ in mouth of friend and stranger.