MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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: 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!

A Remembrance Video of Mattie

September 4, 2010

Saturday, September 4, 2010

Saturday, September 4, 2010

Tonight's picture was taken at Mattie's 7th birthday party. One of the activities at the party was designing your own cupcake. Mattie did not like many sugary treats, but over the course of his year in the hospital, he grew to love vanilla frosted cupcakes. It became one of his signature traits. At the party, Mattie worked hard at frosting the cupcake and decorating it himself. You will notice that he put seven pretzels in the cupcake to represent seven birthday candles. You would think after working diligently on this creation, he would want to eat it, but instead he handed it over to me, and told me he wanted me to eat it. The funny part about this, is over the years, when people gave Mattie sugary things, he would land up giving them to me. I was the great recipient of candy, cookies, and cakes throughout Mattie's years, and we always joked with each other, because I would ask him who was the kid in this relationship, him or me?

Poem of the day: Almost a Year by Charlie Brown

It's almost a year and I'm looking back
At what happened a year ago.
I can hardly believe how bad it was
It was such an awful blow.
Now when I read what happened
I can see that I was in denial.
I wanted so much for you to live
But you were walking your last mile.
The situation was unbearable
Although everyone did their best.
And just five days later
You finally got to rest.
I'm your mom forever
And that will never change
I wish things could have been different
But that's something no one can arrange.
I will never forget you
For your love is sealed upon my heart.
And I want to believe that in the afterlife
We will no longer be apart.


I had the opportunity to meet my friend, Carolyn, and her two children today and go to the Christmas Tree Shops in Maryland. Some of you may recall my previous trip with Carolyn to this store. Unlike the name of the store, the contents inside have absolutely nothing to do with Christmas. Instead it is a discounted variety store. Peter introduced me to this store when I was living in Boston, and finally this year one has opened in our area. It is a huge store, and when we go, we land up shopping for a good two hours.

In a way, I have had to learn to shop again. As a mom of a very active boy, who despised shopping, I learned to either not go shopping and became proficient in ordering from catalogs, or I was a speed shopper and missed a good 75% of what I was seeing around me. In addition to this retraining, I also emotionally have had to accept shopping now. It it hard to go shopping and not look for someone else. One of the joys of shopping I used to have was picking out things for Mattie. I can no longer do that, and instead must accept that I have to pick out things for myself and of course Peter. With that comes a host of other feelings such as guilt and sadness. Guilt because Mattie is no longer around, and yet how can I be contemplating getting something for myself? Naturally sadness because I see toys and other things that Mattie would have loved to receive, but will never get the chance. So even something innocuous as shopping at times can be wrought with issues.

After shopping, we all went out to lunch together. Like Mattie, Gavin (Carolyn's son) brought along a toy or two to keep himself busy. Mattie would have approved of Gavin's toy selections! Ellie and I sat next to each other, and we chatted about her summer, her trip to visit family, and the excitement she had about a neighborhood party she was attending tonight. On the drive back home we talked about other topics Mattie would have loved, particularly snakes and rollercoasters.

The item that Ellie (Carolyn's daughter) purchased today was a lady bug tent. She is very fond of lady bugs, and the assembly of the tent looked simple enough. Goodness knows I put up many tents with Mattie and had to figure it out, but the assembly of this particular tent was very different from anything I was used to. So Carolyn and I literally tackled this assembly until we figured it out. At one point Carolyn was on the outside of the tent, and I was trying to put together pieces on the inside. It was a comedy show, and the kids' commentary was a riot in the background. Needless to say, here is the cute finished product, with Ellie and Gavin inside! When there is a will, there is a way! Before leaving Carolyn's house, she handed me a little bag to help me get through the week. As I opened it tonight, it is filled with godiva chocolate bars! Carolyn knows this is my drug of choice!

As I promised last night, I will be reposting blogs from last year, until we reach September 8, 2010. So below you will find the posting I wrote last year at this time. I suppose I did not explain last night why I feel compelled to share these postings again with you. After all, if you were interested in reading what happened last year to us, you could easily access that at any time through the archives of the blog. I am also quite aware of the fact that rereading this may be hard for my readers, or this may disinterest you. I can appreciate both feelings, and naturally because this is not a class, or live discussion, you can choose at any point not to read something. However, I hope despite the difficult content I am writing about, that you will want to continue to share this painful journey with me.

Reposting the writings from last year helps to retell our story. I recall one of my colleagues who is a trauma expert, would come to lecture my students each semester. He distinctly told my students that you can not retraumatize someone by having them retell their story. The trauma (or incident) has already happened! Retelling the story must happen, retelling the details must happen, and if healing is ever to take place, these details and feelings must be confronted head on and processed. Retraumatizing someone by reliving the past is a myth. I remember hearing this lecture time and time again, but not fully appreciating it until now. Now I wholeheartedly understand what my colleague was saying over the years. I know others in my life may want me to put these traumatic details of PICU life in some compartment and focus upon moving forward and healing. Mainly because so many of you want me to be okay and happy again, so I understand the reasoning behind the concern. But having lived through trauma, I assure you forgetting the details right now is NOT possible. I carry the traumas with me, whether I repost the writings from last year or not. Having the opportunity to share them with you is powerful for me. It is powerful because in essence you are able to hear my pain, reflect on what I lived through in a year's time, and perhaps in the process it helps me see why this year has and continues to be so challenging for us. I may not remember the exact dates or medications that were administered, but for the most part, I recall many of these days vividly. As I reread September 4, 2009, I know exactly how I felt that day. I can recall the sights, sounds, and anxieties present within the hospital, and I can vividly see the exam room in which all the fluid was removed from Mattie's body. So whether I repost the blogs or not, I see and live what you are reading, however, unlike yourself who can stop reading it or can place it out of your mind after you read it, I can't. I can't because this is Mattie's story, and Peter and I lived this nightmare and we are forced to continue living with this being a part of our lives. For me, retelling our journey is one of the ways I have chosen to process my pain, and I hope you can appreciate my decision.

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September 4, 2009's Blog Posting

I have so MUCH to report today and yet so many emotions going around in my head that it is hard to know where to start. I will begin by sharing our harrowing Thursday night. This was a night that Peter and I will always remember!


As our readers know, Mattie was in intense pain on Thursday during the day, which is one of the reasons he was readmitted to the PICU. However, by Thursday night, Mattie's abdomen was becoming VERY distended. So much so that it looked like he was going to burst open. By around 2am, Mattie looked about nine months pregnant. The whole situation was down right frightening, Mattie was in excruciating pain, and the worst part about this is we weren't getting sufficient answers to our questions. At one point last night, we were dealing with over four different medical residents in our room, all from different specialities. Each professional had their own opinion about what was happening, but guess what?! No two opinions were the same. We landed up becoming highly anxious over all of this, and we were very uncertain how to help Mattie. The surgical resident felt that Mattie needed follow up xrays last night. So literally at 2am, a portable xray came up to take the first xray, and then about an hour later came back for an additional xray. However, I had a major problem with this x-ray tech. This tech had neither expertise working with children nor compassion to help a child in pain. The tech wanted to place Mattie's body in a very uncomfortable position just to take the x-ray. Mattie was hysterical, anxious, and in so much pain that he bearly could move his body. Yet the tech kept insisting and becoming impatient with Mattie that he wasn't complying with his directions. Peter was helping the tech, and I went into the room next door, because I needed a break from the screaming and crying. However, when Mattie yelled out, "Mommy," I ran back in the room, and chewed out the tech. I told him he had to learn to think outside the box. If he is working with a patient who is unable to move his/her body to a certain position, then it was his job to find another way to get the job done. So I showed him how it could be done differently. I was so angry, I wanted to throttle this man.

The situation only got worse. There were two groups of thinking for why Mattie's abdomen was dramatically increasing in size. One theory was that Mattie's pleural cavity was filled with air, and the other theory was the cavity was filled with fluid. Naturally air and fluid are two different things, and should be treated accordingly, not the same way. Our nurses and advocates were concerned about Mattie's distention too, and a few of them recommended the placement of an NG feeding tube last night to help tap and pull out the air from Mattie's abdomen. The problem with this is two fold. Mattie would have to sit still for the placement of this tube without sedation. This may work for a typical child, though I imagine no one likes the gagging feeling this tube produces while it is being inserted, but for Mattie having such a tube placement would only heighten his anxiety. In addition, as Peter astutely said, we are NOT sure that Mattie's cavity is filled with air, and if it wasn't, then we would be subjecting Mattie to an unnecessary painful procedure. So Peter did not consent to an NG tube placement. I was actually on the fence about this, I just wanted the stomach region to return to its normal size. But Peter did a great job, and he actually made the right choice in the end.

So basically after several theoretical arguments with residents, watching them manipulate and touch Mattie's abdomen (which caused INTENSE pain and anxiety), and two unpleasant xrays, we were all wiped out, with no real answers or a plan of attack for this growing problem. By 7am today, I literally couldn't take it anymore. Peter was up most of the night with Mattie, helping him manage Mattie's pain. I was listening to Mattie's pain all night, but physically couldn't move to help him. I was too wiped out from my previous all nighter the night before. Peter and Mattie's wonderful HEM/ONC nurse, Janelle, just couldn't give Mattie enough pain medication early this morning to balance and mitigate the pain. Mattie just kept on screaming and crying. It was completely INHUMANE! I had observed enough to know that something had to be resolved ASAP and we needed answers. Until we were able to get answers the doctors raised the concentration of Mattie's Dilaudid pain dosage, which we hoped would help with the pain, but Peter and I were both concerned that the cause of the pain wasn't being identified. We were only throwing medications at the problem to cover up the pain. So I wasn't happy and grew more and more concerned.

The irony is, I wonder if the doctors were as concerned as we were. They certainly did not act like it, but Peter and I just kept pressing the issue! I told Janelle, that the on call attending doctor, Dr. Abu-Ghosh (a lovely individual who was Cody's doctor, many of you may recall the story of Cody, a young boy Mattie's age who died from his four year battle with cancer this year) had 30 minutes to get herself here to answer our questions, otherwise I was going around her. I needed an attending physician to help us, and had more than my fill of residents by 7am. Janelle worked hard to pass along our messages, and in the mean time, I called Dr. Snyder, Mattie's oncologist. I basically started off the conversation with the line, "I need your help." She could hear Mattie writhing in pain in the background and within 30 minutes, ordered a CT scan and ultrasound for Mattie with sedation. I also paged Debbi, our sedation nurse angel, because I felt we needed a powerful advocate. Debbi responded to my page within minutes and came to visit and assured me that in an hour Mattie would be sedated and scanned. Thank God! I had asked for a CT scan on Thursday, but the doctors felt that Mattie did not need one. Here is the irony of all of this, so far when Peter and I have said that something is wrong with Mattie and he needs further assessment, we are usually 100% correct.

Debbi helped us obtain Versed for Mattie today. Mattie was SO anxious this morning, we could bearly touch or talk with him. Versed helped tremendously and we were able to take Mattie down to the CT scanner. Jey, our favorite CT tech, and Mattie's "big brother" met us in the CT room. He spoke with Mattie and told Mattie that he did not have to get off the stretcher mattress, instead Jey transferred Mattie onto the CT scanner, mattress and all. This was actually a very thoughtful and compassionate gesture, because any additional movements for Mattie were painful.

The CT scan identified the problem immediately. Mattie's pleural cavity was completely filled with fluid, NOT air! Thank goodness we did not do the NG feeding tube last night, because that would NOT have addressed the problem. We met with a radiologist today, who highly recommended a Paracentesis, which is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis. I liked this radiologist's style, because she performed this procedure immediately under the guidance of an ultrasound. The radiologist pulled out 1.5 liters of fluid from Mattie's abdomen. That is a HUGE amount of fluid, and it is no wonder he was in severe pain. The radiologist told me that when the pleural cavity is under pressure and that level of expansion, that this can cause off the charts pain.

I was relieved that there was an explanation for the pain, because I was also being prepared for the option that this issue wasn't correctable and this was perhaps just disease progression, making it virtually impossible to alleviate Mattie's pain. Hearing this news was devastating alone, and when I heard that the CT scan showed fluid build up, I felt as if I won the lottery because in my mind this was correctable. I also had the pollyanna attitude that once the fluid was drained, Mattie would feel better for a while, and we would be able to be discharged within a day or so. All very wishful thinking.

While waiting for the CT to be completed, I spoke with Jey in the hallway. He told me a very touching story about how challenging a time it was when he lost his father to cancer. He said he too thought he couldn't go on, and yet if he did not go on, he wouldn't of had the wonderful opportunity to meet and help people like Mattie and my family. I was in a state this morning, and yet Jey's comment remained with me throughout the day.

My parents came to visit Mattie this morning and then they went out to lunch with Mattie's director of school counseling, Susan. I appreciate all of you who are supporting my parents as well! Mattie really doesn't like anybody in his room other than Peter and myself, so my parents only come for very, very short visits.

I had the opportunity to see Ann. Ann and Alison worked very hard to make sure we were supported today, and Alison ordered us lunch and Ann delivered it to us. Alison also watched Ann's children, so Ann could come and spend some time with me. I am not the best of company, but Ann got me out of the room, into the fresh air, and eating. I appreciate Ann and Alison's efforts, because as the day wore on, it became even more depressing. Ann was up with me last night too as Peter and I were fighting with numerous residents and trying to get down to the bottom of Mattie's issue. I feel blessed to have her support, during a time when I really can't open up and allow others into my life. Ann brought Mattie some gifts today, and one of his favorite ones was an alligator tooth from Florida.

After Ann's visit, Dr. Abu-Ghosh came by to talk with us. She let me know that Mattie's albumin levels were still low and that he would still need to receive lasix to flush out excess fluids from Mattie's body. Dr. Abu-Ghosh explained that we wouldn't be discharged from the hospital until these levels stabilized, but she also prepared me for the fact that they may never stabilize. I am tired, but I put two and two together VERY quickly. What this adds up to is a very sick child before me, one who I may not have around for very long. In addition, it also means that we will be spending more time in the hospital than at home. The first thing that crossed my mind was that Mattie may never see home again. He seems okay with this, since he tells me he doesn't want to leave the hospital. Most likely because he is in pain and feels the hospital can manage it better than we can at home with our limited supply of prescribed narcotics. None the less, this whole revelation for me was extremely upsetting. When I shared this news with Alison, she said that she and the Team would do whatever we needed to recreate Mattie's home within his PICU room. But here is the issue with this, Mattie doesn't seem to mind the fact that he isn't surrounded by his things, this appears to only be weighing me down. The only two things Mattie really wants around him is his cat and a fish. Neither of which will the PICU welcome!

For the first time in weeks, I was able to sit by Mattie's side, and hold his hand and massage his legs. He has been in SUCH intense pain the last two weeks, that he did not want to be touched. So we had several hours of cuddling time today, and within those times, I noticed he became relaxed and peaceful.

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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "The picture that Palen sent is beautiful and very symbolic. I hope the auction is a tremendous success financially but it already is a success in further spreading the word about pediatric cancer and the great need for both funding and awareness. I do think that those who have had a child die are forever changed. Your sense of innocence, that you can protect the one you brought into the world from what is out there is gone. The relationship remains child and parent no matter how old both of them get. We have no "word/name" for an adult child, merely a modifying adjective. That tells you that the relationship which was forged never changes in the most basic ways and that at its best, the love remains as strong as it ever was. Reading the posting from last year was incredibly painful for me and how much more so for you who had to live through this. As you count down the days to this unhappy anniversary, I send you strength. I hold you gently in my thoughts."

September 3, 2010

Friday, September 3, 2010

Friday, September 3, 2010

Tonight's picture, just like the last few nights, was taken at Mattie's 7th bug/reptile birthday party. Ann got the kids these huge fly swatters and they were used to play all sorts of games at the party. However, Mattie decided to use his flyer swatter on James. James is the good hearted dad down on the ground, dressed like a roach. Mattie was enthralled that someone would actually dress up as a roach. At first Mattie did not think he could participate in the games, but as we helped move his wheelchair around, he got into the spirit of things, as you can see.

Poem of the day: No Right or Wrong by Charlie Brown

None of us is right or wrong
For we're each in a different place
Every person's loss is special
And grief has a unique face.
I do not tell you how to grieve
Or how many tears you should shed,
And you should not tell me to celebrate
And no longer mourn my dead.
Each of us has a different path
Some are high, some low, some hard.
But anyone who's loved at all
Knows death will leave his scars.
So thanks for sharing your story
I'm glad that you found your way,
And in turn be respectful of my words
For I too, need my say.

Despite this being a very challenging time for us, filled with sadness, confusion, and at times anger, I can say I made a new friend this week. I wasn't expecting to make any personal connections while attending the Hyundai events, but in essence I did. I had the opportunity to meet Tim. Tim is the associate administrator for the Department of Pediatrics at Georgetown University Hospital. He works closely with Dr. Aziza Shad. Tim and I had the opportunity to chat extensively while at the events, and we hit it off immediately. He is clearly competent and gifted at what he does for the Hospital, but what caught my attention is he is a deeply feeling and compassionate human being. He actually called me today, because he knew how I felt about the couple sitting next to us on the evening of the Hyundai reception. The fact that he cared about my feelings and wants to stay connected to Peter and I and the Foundation means a great deal to me. I hadn't mentioned Tim to my readers, but you should know that at each event I attended this week, I cried. I typically did this when Tim was present. It was either what he said to me, or how he said it, that captured my heart and at the same time I felt comfortable enough to cry. I think I feel at ease to cry in his presence because he understands the pain we lived and continue to live, and he isn't afraid to outright talk about it, or to see what pain looks like in another's face. So this week, I have become attached to another Georgetown person, and my list there is only growing.

I received this beautiful picture yesterday from Palen, Whitney's sister. As many of you may recall, Whitney was one of Mattie's favorite childlife interns. On July 22, 2010, I reported the following on the blog:

Palen lives in Florida now and is married to a US Navy officer, who belongs to the VP 26 Tridents Squadron. Palen is VERY familiar with Mattie's story, and attended both The March for a Mattie Miracle in 2009 and the Mattie Miracle Cancer Foundation Walk in 2010. Palen has been elected to serve as the Vice President of the VP 26 Tridents Officers Spouses Club, and one of the activities the Club is undertaking this year is a service auction. The Club solicited feedback from its members regarding the charity the group wanted to raise money for this year. Palen told me that the group was deciding among three finalists. One of which was the Mattie Miracle Cancer Foundation. Palen clearly represented our Foundation in a very passionate way, and the group decided that this year's funds from the auction will go directly to our Foundation. I was thrilled and so honored to receive this news, and as I told Palen it is awe inspiring how women who never met us are so committed to our story as well as dedicated to helping other children and their families battle cancer. Stay tuned for more details about this exciting event!

Palen snapped this picture yesterday after she came out of a planning meeting for the service auction. When she looked up in the sky, she was taken a back by this beautiful sight. Notice that there are SEVEN rays in this sunshine! Whitney told her sister that Mattie was with her yesterday and was very proud of the work she is doing on the auction to raise money for the Foundation. I couldn't have agreed more, as many of you know the symbol for the Mattie Miracle Cancer Foundation is the sun with 7 rays. Each ray represents a year of Mattie's life. Palen saw the Foundation symbol in three dimensional yesterday, a gift from nature!

I saw Ann's mom, Mary, this afternoon. When I saw her she seemed uncomfortable and hungry. So I worked with her caregivers to resolve both issues. As Mary was waiting for dinner, I decided to rub her hands and arms with the cherry blossom lotion I gave her and we began chatting. Mary told me about an interesting dream she just had. What caught my attention about this dream is it reminded me of a dream my mom recently told me about. A dream that my mom's grandmother had. I come from a line of women who lost their sons. My maternal grandmother lost a son, and my maternal great grandmother also lost a son. In my great grandmother's dream, her son, who was deceased, came to her and basically told her he couldn't have fun and live his life in heaven when he sees his mom in such agony on earth. Well ironically Mary told me a similar story today, in which her son was telling her that he is upset to see her mourning so deeply for him, and it is hard to live his life now in peace knowing how much she misses him. I am not sure what to make out of either dream, but I find it interesting that moms who lost a child do struggle with these questions, in even in our dreams.

As September 8 is fast approaching, I decided for the next several nights to share with you the blog postings from the previous year. I think it is important to reflect upon where Peter, myself, and Mattie's community were last year. As you read September 3, 2009's posting, I think one thing is clearly evident, I was in complete DENIAL that Mattie was going to die five days later. You can hear me talking about strategies to manage medication at home, and struggling to understand Mattie's pain, so that in essence we could take the pain away and he could go on living. As I read what I wrote, I can clearly see I was still in fighting mode, and not in the mode of saying good-bye. Though I am not sure how a mother can ever resolve herself to seeing her child die without giving every last effort to do something. The other obvious thing that comes through in my writing last year is that our Georgetown University Hospital family was imperative. They mobilized into action on that day for us. What you need to understand about September 3, 2009, was that when we readmitted Mattie to the Hospital (since he just was released the night before!) this was his final admission. He never was discharged again, and he never went home again. He was that sick, and yet, we took him home on September 2, hoping that we could manage him at home, and have a few days of peace with him there. But his pain was overwhelming and in all reality we should never have released him from the Hospital. On September 3, 2009, Mattie made the decision that he did not want to go home again, he wanted to remain in the hospital, and we respected that. However, in all reality Mattie was 100% correct, his pain couldn't have been managed at home, and I am so thankful that when I screamed we need dilaudid to Debbi (our nurse sedation angel), she got it immediately! All I can say is I won't forget Dr. Shad, Debbi, Dr. Biel, Dr. Spivek, Katie, Christie, and Jey on September 3, 2009.

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September 3, 2009's Blog Posting


Wednesday night was an absolute torture. Mattie fell asleep at around midnight, but by 1am, he couldn't get comfortable and was in a lot of pain. I never got any sleep last night and neither did Mattie. I was up and giving Mattie IV morphine every 15 minutes. He would have only about five minutes of pain relief, and then be screaming out in pain. As the morning wore on, I could tell Mattie was getting hotter to the touch, and by 6am, he felt like he was burning up. By this point, I went to wake Peter up and we then took his temperature. Mattie was running an 101 degree fever, and I proceeded to call the HEM/ONC doctor on call. I was VERY tired and very impatient. The doctor did not call me back right away, and so by 6:30am, I called Dr. Shad on her cell phone. Dr. Shad responded and told us to come right into the PICU. So at that point, Peter sat with Mattie, while I scrambled around the house getting ready and packing. Mind you I had just unpacked, since we got home on Wednesday night from the hospital. I was very unhappy and very frustrated, and felt sheer exhaustion.


Riding in the car to the hospital was painful. Every bump and motion made Mattie highly uncomfortable, and the level of tension in our car was so thick you could cut it with a knife. As we were wheeling Mattie toward the PICU, I ran ahead to try to get someone's attention. When I walked into the unit, I saw Debbi (our sedation nurse angel). I told Debbi we really needed Dilaudid, and within minutes, Katie and Christie (Mattie's wonderful HEM/ONC nurses) were delivering this potent pain killer to Mattie. Thankfully! It was only at that point did I see Mattie calm down and experience relief. It was almost like receiving a special gift, the crying and screaming stopped! I have heard so much crying this year, it almost has permanently drowned my ear drums!

We had a visit today from a surgical resident. When he walked in, he introduced himself and wanted to examine Mattie. I was highly confused by his visit, but he said he was asked to consult with us to rule out a bowel obstruction and to offer some suggestions for Mattie's intense bloating (since he said bloating can be a common side effect from surgeries and therefore his team may have some insights on how to deal with the bloating in general). Well I felt bad for this fellow, because between Peter and I we practically chewed his head off. I was confused by his visit because last night's gastroenterologist ensured me that Mattie did not have a bowel obstruction. He told us he wanted us to do a follow up x-ray today and also listened to Mattie's stomach with a stethoscope. Mattie however needs to be in control of the process. He holds the part of the stethoscope that touches his body, and moves it where the doctor tells him to. In fact, Mattie knows where many of his major organs are located in his body. Mattie is now being nicknamed the "little doctor."

Taking an x-ray of Mattie was downright painful to watch and hear. I let Peter take this project on, and I waited in the hallway. Mattie lands up writhing in pain and screaming, because his body is SO full of fluid. So when the tech tries to put the xray film behind him, it is excruciating! Today Mattie looks like a juicy tomato. His stomach is enormous, his face is swollen, and his legs are almost twice their size. The x-ray tech had her hands full with Mattie, but she was lucky enough to have Peter's assistance.

Jey, Mattie's "big brother" came up to visit me today and we were talking about what a special CT tech he has been for Mattie. However, you should know that many techs are not wild about Mattie. Mattie is perceived as difficult and some even are bold enough to think he is spoiled. I personally am offended by those who view Mattie as spoiled. Here is a boy who has been dealing with one of the most virulent forms of cancer, has survived three major surgeries, 11 months of chemotherapy, and a host of psychological consequences of cancer. It seems to me that such a patient deserves to be spoiled and pampered to some extent. It turns out though, as these same techs, have gotten to know Mattie they realize how wrong they have been about him. In fact, many of them now greatly respect Mattie for his forwardness, his ability to advocate for himself, and to get his needs met. Funny how these individuals have been transformed. As Jey rightfully said to me, it is just a matter of hospital employees remembering why they chose to work in a hospital, and to also make the effort to get to know their patients. So true!

Jey came to talk to me today about getting a fish for Mattie. I thank all of you who wrote me about pet fish ideas for Mattie. I told Jey that I would love for Mattie to be able to bring his pet fish into the PICU when he comes to stay over. I think Mattie would find watching the fish and trying to care for it very therapeutic. However, having live animals in the PICU is against hospital policies. I need to talk to Linda about pets and integrating them into Mattie's life here. Jey is a spiritual person, but like myself, is having a very hard time understanding and accepting God's plan for Mattie. It is actually hard to come to peace with this. Jey let me know that when Mattie dies, and my family no longer will be coming to Georgetown, that he plans to change careers. He said he will be unable to work here any longer, we have had that significant of an impact on his life. I was actually very, very touched by Jey's sincerity, commitment, and love for Mattie and my family. I told Jey that meeting Mattie was fate for him, since Mattie was diagnosed with cancer on his father's birthday, July 23.

Peter summed up Mattie's issues to a T today. Mattie is contending with three forms of pain, and somehow it is our responsibility to be able to treat each form so that we can effectively provide some relief to Mattie. The three forms of pain are: 1) anxiety, 2) the cancer itself, and 3) constipation and fluid retention. Naturally these three forms of pain require different treatments, and up until today, we were just throwing pain medications at all the issues, which clearly was ineffective.

To address the pain from the cancer, the HEM/ONC team consulted with Dr. Spivak. Dr. Spivak is the head of pain management at Georgetown Hospital, and he helped us during Mattie's sternotomy in June. Dr. Spivak felt that Morphine was no longer effective for Mattie, and ordered an IV drip of Dilaudid. In addition, we will be increasing the concentration of the fentanyl patch on Mattie's back. My concern however continues to be over medicating Mattie. But Dr. Spivak assured me as the pain subsides from constipation or fluid retention, we can taper down the medications if need be.

We also consulted with Dr. Biel today. Dr. Biel is Mattie's psychiatrist. We discussed Mattie's intense level of anxiety. The littlest things set Mattie off. He is sensitive to touch, and Peter and I can no longer hug or hold Mattie. This is a very counter intuitive feeling, because when your child hurts, you want to hold them. In addition, Mattie is afraid of the infusion of most medications, of doctors and nurses examining him, and the list goes on. He is also extremely frightened of perceived pain. He fears the start of pain and the inability to have relief from it. It is actually a horrendous sight to see your child so anxious. In any case, Dr. Biel prescribed a higher dosage of IV valium for Mattie today and we are giving it to him every two hours. Though Mattie has spent the majority of the day in and out of sleep, we feel this is actually the most humane way to treat him right now, until we get his pain under control. However, now at 11pm, Mattie is up and highly agitated. Somehow the nights are always the WORST for us.

As for the constipation and fluid retention, this is actually more complicated to manage. To handle the constipation, Mattie had to receive Methylnaltraxone today through his leg catheter. We selected the catheter because we thought Mattie would prefer this method to the actual insertion of a needle in his leg. None the less, Mattie put up quite a fight today, and refused to have his leg catheter accessed. Peter and I tried talking with him, rationalizing with him about the importance of the medication, and also trying to normalize his fears. NOTHING worked. So we even attempted giving him a dose of Dilaudid and Valium before attempting to insert the needle into the catheter. But basically nothing we gave Mattie relieved his anxiety over this procedure. When Dr. Biel spoke to Mattie today, he asked him if Mattie was scared or frightened of anything. Mattie answer, "yes." However, the only thing he claims to be frightened of was getting medicine through the leg catheter. As the day wore on, I realized he needed to receive this medication and we couldn't hold it off any longer. So Peter and I played good cop, bad cop. Mattie got frustrated with Peter and threw him out of the room, which was the perfect opportunity for me to work with Mattie and play good cop and get him to comply. Meanwhile, Katie and Christie, Mattie's nurses, were patient and stayed with us throughout this entire ordeal. Mattie did allow Katie to give him the methylnaltraxone through the catheter, but I really wonder how we are supposed to do this every other day at home?! One thing became very evident to me from this experience. Mattie and I most definitely have a special connection. Not just because we are mother and son. Mattie and I think a like, we have similar personalities, and react to things similarly. Under times of stress and chaos, this is actually a blessing, because I know exactly how Mattie is feeling or perceiving things. Mattie and I have survived many things together as he was growing up. His toddler years were far from easy, but we grew together and always respected each other. It is through this respect, which was earned, that I can rationalize with Mattie and most times he will comply with what I am asking him to do. This is a powerful trust and gift to be given.

The xray today was very revealing. In fact, the intestines couldn't be seen in the xray, because the main culprit in the film was fluid. Mattie's body is completely filled with fluid. Where did the fluid come from? Well there are a lot of theories, but the main one is due to Mattie's lack of nutrition. Mattie is unable to take in protein and produce albumin, which is the most abundant blood plasma protein produced in the liver. Albumin is a vital protein that prevents the intestines and blood vessels from leaking fluid into the body cavity. Since Mattie's albumin level is low, fluid is literally leaking from his vessels and accumulating in his body. In fact, if you saw Mattie's body it is almost unrecognizable. He is so swollen, he looks like a round mass rather than a seven year old child. So today, Mattie was given an infusion of albumin, which will hopefully pull the fluids back into his vessels. He was also prescribed Lasix, which is a diuretic, used to flush excess fluids in the body. I am told that it will take almost 72 hours to get Mattie's fluids under control. So we will be here through the weekend. Another holiday spent in the hospital, what a surprise, but we really don't even care any more!

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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only say that people who try to tell others how to feel are like those who try to tell others how to believe or pray. It works for me, is what they think, so it should work for you. And if it doesn't, then, either you are not trying hard enough or there is something wrong with you. In grief as in our search for G-d, we are all unique. A chorus sounds as it does because it is made of many different voices and it would not be the same were they all alike. So it is with life, with death, with grieving and with prayer. The One who is, made us each unique so that our voices could be told apart when he listens for each of us. I am glad that the couple found a way to cope with their son's death but it is not your path nor Peter's and they should be respectful of that. I am amazed that you made it through all three events and of course you found yourself asking "why isn't Mattie one of those who made it, who survived"? You wouldn't be his loving, caring parents if you didn't feel that way. And it is hard to believe that with cancer as great a problem as it is in children that we are still working with 25 year old "equipment" (drugs). It is a sad commentary on our priorities. I think the gifts you were given were lovely and I do hope they help you make it though this time leading up to the anniversary of Mattie's death. As you walk the path today and everyday,know you are loved, supported and not walking it alone. I hold you gently in my thoughts."

September 2, 2010

Thursday, September 2, 2010

Thursday, September 2, 2010

Tonight's picture was taken in June of 2009 at Mattie's "bug and reptile" birthday party at our friend Christine's house. A surprise to all of us was Christine's husband, James, got into the theme and playfulness of the day. He bought a roach costume and carried Mattie's roach cake (literally shaped like a roach), out to Mattie. I am not sure what Mattie was more thrilled about.... seeing James as a roach or the actual cake. Both were pretty impressive and memorable! Actually for some reason seeing this picture tonight was hard. Hard because I remember the life, humor, and energy Mattie had that day, and it is hard to believe that he really is no longer part of our lives.

Poem of the day: The Battle Goes On by Charlie Brown


So many things I want to say
It was such an overwhelming day,
I seemed to see you everywhere,
It was almost more than I could bear.
I saw your friends at the ceremony,
And they were all very solicitous of me.
But I know what still lies ahead,
Even though "I'm fine" is what was said.
They continue to battle every day,
Against the cancer beast, dark and gray.
But your battle ended a year ago
And it remains quite a blow,
To be here without my boy,
And to try to cope with others' joy.
So though I don't have you any more,
I am committed to the core,
To fight to help these others survive,
That's what keeps my hope alive.

I received Charlie's e-mail this morning and I was surprised. Why was I surprised? I was surprised because I thought I kept last night's posting rather neutral. However, I guess after reading my writings for two years, you kind of get to know a person's style. Charlie clearly knows mine. She is astute, because she has observed when I do not report on something it usually means that it bothered me and either I am better off keeping my thoughts to myself, or simply I am not sure how to process my thoughts and therefore I remain silent. Charlie somehow knew from my lack of reporting on last night's Hyundai Hope on Wheels reception that something was up.

The reception last night was wonderful. The Hyundai dealers and leaders couldn't have been nicer, more gracious, or more energetic and committed to the fight against pediatric cancer. My issue with last night had to do with a couple who sat next to me at dinner. This couple also lost their son to Osteosarcoma. I asked them during the dinner whether hearing cancer success stories and talking about finding a cure and so forth impacted them like it does me at times. I guess I asked the question, in hopes that they shared similar feelings and thoughts as me. But on the contrary we couldn't have been more diametrically opposed. I will spare you the details, but the overall gist of the conversation was that the way Peter and I are looking at Mattie's cancer battle and death are ALL wrong. We shouldn't be questionning it, but using it as a positive force in our lives. The conversation continued, and as it did, I found myself unable to speak at the table. I was quiet because I respected their opinion, and the ways they have channeled their grief, yet on the other hand I was angered that they couldn't give me back the same courtesy. Peter tried debating our view point with them, but it was going no where, and I did not feel the need to have to justify my feelings. This whole interchange affected how the rest of the night went for me.

This morning, I attended the third Hyundai event. This event was held at the National Press Club in DC, and there was a wonderful formal program that ran for about 45 minutes. The media was there to capture the fact that this is the beginning of National Childhood Cancer Awareness month, and that Hyundai has given out 68 hope grants around the country to scientists to pursue innovative pediatric cancer research. Hyundai hopes to raise 23 million dollars by the end of September! At the event, we saw two videos. One was the commercial I posted last night on the blog, and the other was a video about the Hope on Wheels program. The 45 minute program went very quickly, and I think that was because there was incredible energy radiating from the Hyundai leaders themselves. Brianna, the National Youth Ambassador for Hope on Wheels spoke today as well. She is the picture of life, health, vitality, and commitment. She told the audience that some times people ask her what she wants to be when she grows up. Her response is a pediatric oncologist. However, then she paused and said she most likely wouldn't be able to achieve this goal, because with the amount of money Hyundai is raising for pediatric cancer, there will be no need for pediatric oncologists in the future, because cancer will be eradicated. It was a very sweet and empowering statement. We can only hope that Brianna's dream comes true, but at the moment I would settle for better and more effective treatments for pediatric cancer. When you think that the last FDA approved cancer drug for children came out over 10 years ago, and that children are being treated with drugs that are over 25 years old, it makes you pause. If you are a parent with a child who has cancer, you more than pause, you become livid, disgusted, and conclude that this is unacceptable.

Today's ceremony made me cry. In fact over the course of the last two days I have felt many emotions. I am saddened that Mattie did not have the opportunity to live, that he wasn't able to tell a positive story, and though I do not like this feeling within myself, I wonder why one child gets to survive, while another is chosen to die. None the less, I have had the wonderful opportunity to meet some amazing Hyundai leaders, such as the CEO, John Krafcik. He and many of his regional and national leaders are truly passionate about helping children and their families with cancer, and frankly it is sincere and not just a company going through the motions to look good in the eyes of the public. I learned a lot about Hyundai, and I hope as their commercial airs this week, it too gets you to pause about pediatric cancer and reflect on Mattie's story and the story of so many child affected by cancer.

I would like to share a picture from today's event. In the front row from left to right is Julie (a Lombardi Clinic parent), Vicki, Dr. Shad, Brianna, and Dr. Nelson (the chair of pediatrics at Georgetown Hospital) in the back row are some of the wonderful Hyundai dealers who support the Hope on Wheels program!






























In the afternoon, I headed to Ann's house to water her garden. It was literally 100 degrees in DC today again, and without water the plants just won't make it. While I was outside, my friend Mary (Ann's neighbor) came by to visit with her two daughters. The girls handed me a big box of chocolate and told me they got this for me at Hershey Park. They know that Mattie died and they thought the chocolate would cheer me up. It was very adorable and very touching, and then they both gave me hugs. This is a scene that has played in my head all day. Mary's daughters did not have the opportunity to get to know the "well" Mattie, yet in their mind Mattie is their friend, and they continue to think about him and in essence us.

I brought Mary (Ann's mom) dinner tonight. She requested certain foods, and I know that when you are unable to choose your own foods for yourself it can take away the pleasure of eating. So I got Mary all the things she requested and sat with her and helped her eat. Before I left though, Mary said two things to me. She said that we have a lot in common. Or which I told her, I KNOW! Then she said if I should get sad or feel alone, that she is always there, and will understand.

What I have concluded about today is that it was a day of unexpected gifts. First I got a box of chocolate, then Mary verbally gave me a gift, and when I got home, I received two gifts in the mail. The first gift was from my friend and colleague, Nancy. Nancy creatively put together a survival kit for me, for the next couple of days. She literally wrote me a card in the kit for each day until I get to September 8 (there were cards for August 30 - September 8). The kit is composed of a beautiful mesh container. I told Nancy the container reminds me of something Mattie would have loved to use to collect bugs and butterflies. Inside the container were all sorts of treats from a book to lotions. It was a very thoughtful gift and definitely made me understand that others get how hard this upcoming week is for us!

The second gift I received in the mail was a book. The title of the book is "Selecting and Surviving a Doctoral Program in Counseling." As I looked at the book, I noticed I was a co-author. My colleagues, who I have worked with for years, took the ideas we presented at conferences over the years and turned it into a book. We had talked about this before Mattie got sick, but once Mattie developed cancer, I was focused solely on him. It was remarkable to see the work I had done and participated in for years, transformed into a publication. When I opened up the book, the book was dedicated to Mattie and the Mattie Miracle Cancer Foundation. I was deeply touched! Helping graduate students was my mission for the longest time, and I am hopeful that such a publication will allow students to see that the stresses of writing a dissertation are normal and the process is daunting. It shouldn't be taboo to talk about it, and knowing that you aren't alone in your feelings is powerful in and of itself.

When Peter got home, he too got a gift in a way. His parents sent him a geology paper he wrote in his senior year of high school. At first Peter did not even remember writing the paper, but as he paged through this 20+ page paper, it came back to him. Peter wrote an author's note to start off the paper, and it was fascinating to hear about Peter's interests and thoughts back then. I could clearly see that even though Peter was writing about glaciers, he inserted humor and even far side comic strips into the paper. That whole notion had me laughing, and clearly his teacher also appreciated his witty humor.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I really don't know how you managed to attend both events yesterday. I was overwhelmed just reading about the grant ceremony and I found myself in tears at the computer. There is so much "Junk" in the news and yet there is so little dedicated to events and needs like this. No where does one see information about Childhood Cancer awareness month or the Hyundai Hope on Wheels Tour and I find that a sad commentary on our news media these days. The analogy of Atlas is a good one, the weight of the world is on one's shoulders and losing the battle only switches the fear you carry for grief, a different but just as heavy burden. I am thankful that there are companies willing to put the weight and funds of their organizations behind causes such as this; we would be even further behind in our research and efforts if they did not do so. As you go to the next event today, I send you my strength to help you through it, although you are probably one of the strongest people I know. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "Congratulations to Dr. Shad and her team for receiving this much needed grant. Thanks, too, for telling all of your readers about this being Children's Cancer Awareness Month. It is something that I shall pass on to my NY friends and colleagues. What an interesting piece about Hyundai! I am so glad that more big businesses and foundations are appropriating money for health issues. It is something I wish our governmental Health organizations thought deserved more research, but, we'll take help from any source. The picture and story about Mattie and Maya was precious. They were kindred spirits and created a wonderful planet, I'm sure. I hope that one day I might be able to see the videos. It is unfortunate that Mattie couldn't be here , in person, to join you at the celebrations regarding the hospital's grant. I know that he was with you in spirit. My greatest concern was looking at your eyes. The lack of sleep is coming through in these pictures. I hope that you are getting some sleep, even if it is during the afternoon. Power naps work too. With love always and in all ways."

Wednesday, September 1, 2010

Wednesday, September 1, 2010

Tonight's picture was taken in June of 2009 at the Lombardi Clinic at Georgetown University Hospital. Next to Mattie is Maya! Maya was the only same aged buddy he had at the Hospital. All the other friends Mattie had were teenagers or young adults. I am not sure why this was the case, but I do think that Maya has a special spark about her and she most definitely could hold her own with Mattie. She is intelligent, very articulate, and in tune with feelings. When Maya and Mattie were in clinic, you could always be assured that the creativity meter would be off the charts. In this picture you can see that they crafted a planet out of a box. They created a whole scene about outer space creatures and Mattie and Maya were in charge of trying to save this particular silvery planet! I not only have pictures of this but I also videotaped these plays. Plays which at times turned into musicals! The videos are priceless! At the event at the Hospital today, I bumped into Maya and her mom. Maya gave me a big hug, and we got to chat for a few minutes! Seeing Maya today reminded me of the fun she and Mattie had together, under the worst of circumstances.


Poem of the day: Anniversary by Charlie Brown

Anniversaries should be happy
Perhaps even filled with laughter
Full of joyful memories
And happy ever afters.
But this anniversary is a sad one
For you are here no longer.
For me to greet this day without tears
Would require someone much stronger.
I've finally come up with a plan
For how to recognize this day
By offering all who knew you
A chance to have a say.
I'm hoping for some stories
And some pictures too,
That show and tell me things
I didn't know about you.

As today is September 1, Peter and I want to make sure our readers know that September is Childhood Cancer Awareness Month. In fact, on the radio today I heard a listing of all the causes September is known for, like Coupon Awareness month OF ALL THINGS! However, in this entire list I heard, there was NO mention to the very important cause of pediatric cancer awareness. I realize I can not change or educate the world over night, but I certainly can make sure my readers know the importance of September. The purpose of Childhood Cancer Awareness month is to bring attention to childhood cancer and survivorship issues nationally. Many organizations dedicated to childhood cancer awareness, research, and support, recognize September as Childhood Cancer Awareness Month and use the time as an opportunity to reach out and educate the public about the prevalence of childhood cancer, the need for greater funding for research and support services and the long-term effects faced by childhood cancer survivors.  In 2008, September 13, was designated as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

As many of you know, Peter and I were invited to attend two events by Dr. Shad today. Dr. Shad is the director of the Georgetown University Hospital Pediatric Hem/Onc clinic, and was the doctor on call the week that Mattie died. Dr. Shad and her team at the Hospital just won a grant from Hyundai, the automotive company. Peter and I got a real education on Hyundai today and learned about their long standing commitment to fighting pediatric cancer, a commitment that started in 1998. Hyundai donates over $6 million dollars a year to support innovative pediatric cancer research. Here is some information about Hyundai and their HOPE ON WHEELS program!


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Hyundai.... Committed to Fighting Childhood Cancer

Since 1998 Hyundai and its dealers have been committed to supporting the fight against childhood cancer. What began in 1998 as a local initiative supported by New England-area Hyundai dealers to raise funds for the Jimmy Fund at Boston’s Dana-Farber Cancer Institute has evolved into Hyundai Hope on Wheels, an independent 501(c)(3) nonprofit organization which is supported nationwide by all of Hyundai’s more than 800 dealers and Hyundai Motor America. At the end of 2010, Hyundai Hope on Wheels will have donated more than $23 million to children’s hospitals nationwide to help kids fight cancer. Every time a new Hyundai vehicle is sold in the U.S., $5 is donated to Hope on Wheels.
 
The Hope on Wheels Tour is the united effort of Hyundai dealers across the country to raise awareness about childhood cancer and celebrate the lives of the courageous children battling the disease. In 2010, the Hope on Wheels Tour traveled to 42 children’s hospitals across the country and donated more than $2 million to support further training and research for doctors involved in childhood cancer research. Hyundai Hope on Wheels designates the medical professionals supported by these donations as Hyundai Scholars.

The 2010 Tour also hosted Handprint Ceremonies for childhood cancer patients, both past and present, at the 42 children’s hospitals receiving donations. The symbol of the Hope on Wheels Tour is a white Hyundai Santa Fe vehicle covered with colorful handprints representing childhood cancer patients from all over the country. The Handprint Ceremony celebrates the courage of childhood cancer patients by capturing their colorful handprints on the white Santa Fe; children attending the ceremony are asked to lend a hand and place their own handprints on the car to commemorate their battle with cancer.

Why handprints? Because there's nothing more personal than a handprint – and the goal of the Hope on Wheels Tour is to share the personal triumphs of each of these children with other childhood cancer patients and their families across the country. Whether it's completing a round of chemo, celebrating a beautiful new head of hair or receiving a clean bill of health, one childhood cancer patient’s milestone can be another's symbol of hope.

This year, Hyundai and its dealers are expanding their commitment to battling childhood cancer with the “Hyundai Gives Hope on Wheels” September program. During the month of September - Childhood Cancer Awareness Month - Hyundai Motor America and Hyundai dealers will raise national awareness about childhood cancer and donate $6.8 million to children’s hospitals and other non-profit organizations across the country.
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Peter and I went to the Hospital this afternoon for the grant awarding ceremony. Before the ceremony started, we had the opportunity to connect with three families we really love. We saw Brandon and his mom, Toni, Bridget and her mom, Cathy, and Maya and her mom, Adina. These are all special people to me, and though it is hard to know that Mattie did not survive this horrible disease, I am happy that these three wonderful individuals are holding their own and keeping hope and faith. For the first time today, however, I did not feel comfortable driving into the Hospital parking lot. It was like how I imagine a soldier feels when returning to the battle field. On each floor of the parking lot, I imagined Mattie, and our struggles parking, managing his wheelchair, and of course the host of emotions that came with Osteosarcoma and its treatment. I saw several of Mattie's doctors today, two of Mattie's nurses, and Mattie's social worker, Denise. Unlike others in my life, Denise could tell immediately that I wasn't myself and I was also sleep deprived. We talked about the one year anniversary quickly approaching as well.

Once the ceremony began, I could see that all the Hyundai executives in attendance were truly dedicated to the mission of helping children with cancer. Their passion caught my attention. During the presentation, one of the speakers equated caring for a child with cancer to being like the Greek god, Atlas. Atlas who was punished and sentenced to hold the weight of the world over his head. Something about this analogy just got to me, and made me cry, because caring for a child with cancer is daunting, overwhelming, and the needs are never ending (like you are holding the world on your shoulders). However, I am afraid to report that this weight doesn't lighten up once your child dies. Instead, I find I am holding the weight of cancer and the weight of death all at the same time, and this can be a very debilitating and ominous task.   

At the ceremony, we met a delightful 12 year old named Brianna Commerford. Brianna is a Hodgkin's Lymphoma cancer survivor and is the 2010-2011 Hope On Wheels National Youth Ambassador. Brianna delivered a greeting in a very sweet and energetic manner, and despite all she has been through, she is passionate about helping and supporting others with cancer. We also had the opportunity to meet Brianna's parents and sisters. They were very generous with their time and we had a wonderful time sharing stories this evening.

We also learned that Hyundai is the first company to spend money to create a commercial on pediatric cancer. This commercial is going to air tomorrow during the NFL preseason game, and then will run throughout the month of September. If you would like to see the actual commercial clip, go to this web address: http://www.hyundaihopeonwheels.org/ and click on "News From the Tour."


We snapped some pictures today. This picture highlight's Dr. Aziza Shad accepting the Hyundai grant to start a pediatric palliative care program at the Hospital. The child in the poster behind Dr. Shad is Brianna!




















 

In this picture, the Hyundai Southern Regional Director and Brianna are giving Dr. Shad the grant!














This evening, Peter and I were invited to a reception and dinner at the Willard Hotel. We had the opportunity to reconnect with Brianna and her family, and we got to take a picture with Brianna and her two sisters.

Left to right: Peter, Brianna, Kristi, Janelle, and Vicki

 
I will be heading to the press club in the morning to hear the official launch of their Childhood Cancer Awareness campaign. So stay tuned for more information.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad you found the pictures and how perfect is that one of you and Mattie on the swing together. He looks happy and relaxed and supported by you both physically and emotionally and one cannot ask for more than that. I know that you are off to events today and I hope that things go well. Remember to be gentle with yourself regardless of what reaction or feelings come up. There are no right or wrong reactions. Your patience with Mary is a huge kindness; so many people would not take the time to explain or to do things that require them to take time from what they deem "important". As you go through the day today, know that you are in the minds of many of us. I hold you gently in my thoughts."

The second message is from my friend, Carolyn. In an email exchange I had with Carolyn last night, I asked her where on earth she got to energy to take her children to the pool after a full day of work and other activities. Here is what Carolyn wrote, "I got the energy for the pool tonight from YOU!!! Sure, it would have been easy to come home, make dinner and then let the kids play with their friends, watch tv, get ready for bed - but it was 100 degrees today, the pool closes in only 2 weeks, and my kids will not be this age forever - and, thanks to you, I now live my life appreciating every second that I am given to enjoy my kids and have "quality" time with them. Thanks to your blog, your honesty, your compassion and your friendship. So when Ellie and Gavin asked if we could go for a swim tonight - there was no saying no. And, just look at the great benefits. I was able to cool down at the pool, I got to enjoy the smiles on my kids faces AND Gavin has been asleep for almost 30 minutes already:)"

August 31, 2010

Tuesday, August 31, 2010

Tuesday, August 31, 2010 -- Mattie died 50 weeks ago today.

Tonight's picture was taken in June of 2009. I found this electronic file accidently last week, and I am so happy I did, because the pictures are wonderful. I have many more from this file to share with you in the next several weeks. This picture was taken in Tanja's backyard. In fact, behind me, you can see Katharina (Tanja's daughter), pushing me and Mattie on the swing. Since I was Mattie's age, I have always loved swings and especially tree swings. There is something very freeing about swinging and being outdoors, and Mattie shared this feeling.

Mattie wanted to go on the swing that day, I could tell he really wanted to, but I could also tell he was frightened and did not want to go on it alone. Afterall, remember Mattie had surgery on three limbs and also had a central line coming out of his chest. Instead of making Mattie feel awkward, I asked him to go on the swing with me. He had to help me, and not the other way around. Mattie appreciated the way I presented the offer to him, and he gladly sat on my lap. What you need to also understand was there were bubbles being blown at us while we were swinging, and Mattie was using his feet to try to pop them while swinging. The perfect game for the boy in constant motion! Tanja and I were chatting electronically last night about this very picture. We both thought of this day at the very same time, and as Tanja aptly pointed out, on that day in the picture Mattie seemed like a happy boy, not a boy with cancer. Special memories like this are priceless, and I can still recall what it felt like swinging with Mattie and having his face against mine.

Poem of the day: Built of Memories by Charlie Brown

I thought of you today.
Of course I did, you'd say.
But this time it was without a tear,
For the thing that I always fear,
Will never happen, I now know,
For you'll be in my heart wherever I go.
I am building a bracelet of memories,
That I can take along with me.
When I am feeling extra blue
It will give me a little "shot of you"
It will remind me of the love we shared,
And how much I wish that you were spared
The fight to live and all the pain,
But my wishes can't bring you back again.
So I build bridges to your memories
To help to keep you close to me.

Today was beyond hot in Washington, DC. I like heat, but even this heat was too much for me. We had a code Red alert in the District of Columbia, and I could see why. I did a lot of running around and in the process, wore myself out. That isn't hard to do especially when you are sleep deprived. In the middle of running around, I had an appointment to get a manicure and pedicure. It was my hope that sitting still would ease my intense headache and my feelings of immense stress with September 8 approaching. It worked for a short period of time, but as soon as my appointment was over, and I started running around again, my stress resurfaced.

I visited Mary (Ann's mom) in the later part of the afternoon. Not unlike myself, Mary was very tired. I sat with her and helped her with her dinner, and then after dinner, I rubbed some lotion on her hands. Before visiting Mary though, I went out to get her a cherry blossom fragrant lotion that I use on her hands. Mary had admired this lotion on me the other day, and she told me she loved the way it smelled. So I decided to give her a tube of this lotion to keep and use whenever she wanted to. Do I think this lotion is going to solve her physical ailments, not at all, but some times receiving a gift and knowing that someone cares about you, makes a great deal of difference. I know this first hand thanks to Team Mattie!

Over the course of the last few days, I have been brainstorming what I would like Peter and I to consider doing on September 8, 2010, the first anniversary of Mattie's death. As my readers can see at the top of the blog, we are inviting you to consider writing an email to us and sharing a Mattie story, or your reflection on how this blog and/or Mattie's battle has impacted your life. I welcome stories, paragraphs, one or two sentences, a picture, or whatever you wish to reflect upon. Our Mattie supporters are a very valuable part of our lives, and we welcome your insights, because I have found through your insights it helps me see, feel, and re-evaluate aspects of my own life and experiences. I would love to post these messages on the blog on September 8, and I can't think of a better way to honor and remember Mattie than by having all of us reflect on his life and his battle. Stay tuned for the other ideas we have decided upon to remember Mattie this year!

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen is with her husband and newborn son on a family vacation. However, despite being on the road, she hasn't forgotten that today is Tuesday, and with that starts another week Mattie is gone from our lives.

Kristen wrote, "Patrick, Conor and I are still driving through Northern Michigan. We finally caught the promised sunset over lake Michigan and I've attached the picture since (Vicki) we share a love of lighthouses. It was one year ago this coming weekend that we flew up to Garland in northern Michigan to surprise Patrick's mom on her birthday and one year ago that it became clear that Mattie was nearing his time. Today, we again are making the very same trip to Garland. There are things in this life, dates, places, phrases, smells, sites that will always remind me of Mattie. Thinking of you, this Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "What a beautiful charm and how appropriate that Margaret gave it to you. I looked up the Pandora jewelry on the web and there are so many different charms and ideas that you can certainly create something that is unique and deserving of your memories with Mattie. Your patience and caring for Mary is a real mitzvah; how lovely of you to put her fear of being childish to rest. It is a real blow to one's self esteem as an adult to be helpless and dependent on others and your ability to assist Mary in self care and self advocating is wonderful and it is clear that she appreciates that. I hope you have lots of "bird traffic" on your deck; I love watching the birds in my yard; they definitely add to my day. You have a busy week ahead and all of the events are good ones. They are however, emotional ones so expect that you might find yourself in tears or even shutting down and allow yourself to be "what and where" you need to. On another Tuesday, I hold you gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "Each time that you go to visit Mary, your sensitivity radiates in your time with her. It is so important to give our elders the time to remember and you encourage that so thoughtfully. You think of bringing her something each visit and have no expectations of a thank you. As Charlie said, you truly are doing a mitzvah. Your bracelet from Margaret is starting a special memory. The sun charm is perfect . How appropriate that Margaret would do this as her class was where many Mattie traditions began. With this gift, the sun will always shine for you. Will the hummingbird feeder go on your patio or be attached to Mattie's tree? Nature is really becoming a major part of your life. Each time you share some other picture of Mattie and a creepy crawley, it shows how he understood the connection between humans and nature. As September approaches, I'm sending you extra energy to deal with the next weeks."

August 30, 2010

Monday, August 30, 2010

Monday, August 30, 2010

Tonight's picture was taken in June of 2009, at Mattie's 7th birthday party held at his friend Campbell's house. Mattie had a bug and reptile party! Right up his alley. Ann and Christine arranged for a company called Reptiles Alive to come to Christine's house. The company brought all sorts of creepy crawling things, that the kids got to see and even touch. Mattie absolutely LOVED it! It was a very memorable party! This was Mattie's second party that year. The first party he had on his actual birthday in the PICU. However most of his friends weren't able to attend that one. As you can see in this picture, Mattie was having an up close and personal encounter with a boa constrictor. I was about five feet away from this snake, but Mattie was clearly intrigued. I have many other wonderful pictures from that day that I just found, and will be sharing them with you this week.

Poem of the day: Cancer by Charlie Brown



Death, you hold no fears for me
But CANCER causes me to shake
I know what damage you can do
And all the things that you give and take
You give depression, pain, disability and fear
You take serenity and strength away
In the fight against you, well
I've seen even the strongest bonds fray
No wonder I have nightmares
And I cannot sleep at night
For even in my dreams
I feel I have to fight
When will I be over this?
When will my life be calm?
I have no idea really, for
There is no magic balm.
I only hope that someday,
All that is left behind,
Are the happy memories of our life,
And peace in my heart and mind.


I had the opportunity to spend a good portion of the afternoon with my friend, Margaret. As many of you know, Margaret was Mattie's first preschool teacher. It is within Margaret's room, that Mattie received the name, "Mattie Moon." Margaret took me out today for my birthday and introduced me to a restaurant that I must have passed hundreds of times taking Mattie to school. However, I never had an opportunity to go in. We changed that today, and the atmosphere was calm, relaxing, and the food was lovely. Margaret and I had a chance to catch up on our summer experiences and on life. But with Margaret and I, time has a way of flying by, and the hours pass along like minutes. Margaret gave me a Pandora bracelet today for my birthday, a bracelet that she actually introduced me to months ago, and have admired hers. It is special to have one of my own now. In addition to the bracelet, she gave me my first charm (as you can see in the picture!). The charm is of the sun! This is quite a whimsical bead, because the rays of the sun are made out of yellow enamel, and in the center of the sun is a smiley face. Not unlike the suns Mattie would draw. All of Mattie's suns had faces! So this bead is very reminiscent of Mattie (and the sun also happens to be the logo of the Resurrection Children's Center, a preschool that meant a lot to Mattie). As I told Margaret today, this bracelet means a great deal to me, because I would like to collect charms for this bracelet that remind me and symbolize Mattie. So in essence this is a memory bracelet, and a bracelet that will always illustrate my greatest creation, Mattie.

Later in the afternoon, I went to visit Mary, Ann's mom. When I got there, Mary's caregiver, Shayla, was there. All three of us had a lively conversation for about an hour. I then helped Mary with dinner and after dinner, we sat outside in the heat. However, for Mary who is in air conditioning all day long, feeling the heat is welcomed for a while. While outside, I helped Mary call Helen (Ann's cousin who recently visited). I am so happy Helen was home and could speak to Mary, since I could tell Mary felt lonely and wanted to connect with someone she felt close to. Before I left Mary tonight, she asked me again what day Ann was going to be home. I naturally told her and helped her count the days. At which point Mary asked me whether I thought she was acting like a baby. A baby because she missed her daughter so much. I told her that I most definitely did not think she was a baby, but instead that all her feelings were very natural and normal. When we love someone, we miss them when they aren't with us. Mary smiled and said that she would expect that I would understand because I am such a sensible person!

When I got home this evening, Peter and I sat outside for dinner. It was hot, and unfortunately buggy, but the deck looks so much better now. I shared with Peter my new purchase today. Margaret introduced me to a lovely store called, "One Good Tern" in Alexandria. While there, I purchased a hummingbird feeder. While Peter was painting this weekend, he was visited by a hummingbird. So I was inspired to try to feed and attract hummingbirds over the next month. Wish me luck!

Tonight, Peter and I received some wonderful news from Dr. Aziza Shad (the director of the Pediatric Lombardi Clinic at Georgetown University Hospital). As many of you know, Aziza is the doctor who helped Mattie die with some sort of dignity. Dr. Aziza Shad and her team at GUH have been awarded a $100,000 grant by Hyundai Hope on Wheels for the creation of The Pediatric Palliative Care Program. I told Aziza, that I wish we lived in a world where there was NO need for a pediatric palliative care program, but having lost Mattie, I know better. Such a program is vital for patients and their families, and I can't think of a better doctor to lead this effort. In any case, I thought I was going to have a slow week, but now Peter and I have been invited to three events this week. On Wednesday afternoon, we have been invited to the Hospital to be a part of the Grant Award's ceremony, and then on Wednesday evening, we have been invited to a reception and dinner at the Willard Hotel. On Thursday, I will be attending a morning event at the Press Club in DC to support Aziza and this fine accomplishment.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "To be haunted even in your sleep is a very difficult thing to have to deal with. I can only imagine how awful those dreams are. I have had those kinds of nightmares (fortunately not frequently) and sometimes they seem to spill over and keep you company in your waking hours for quite a while. I hope that as time goes on this lessens and your sleep once again becomes restful and calm. What you said about visiting with Mary is true, she may not remember tomorrow that you were there but you will. The mitzvah is no less because the recipient may not remember it, in fact it is greater because you don't necessarily have the thanks of the person you are doing the good deed for. we forget sometimes that others also have difficulties in their lives as we are involved in our own issues and it is again a tribute to you that people are willing to share what is really important to them with you. Thank you for sharing the story of Patches and the deck; I have that mental image now. I am glad that the situation was reparable as it certainly is amusing to those of us who read what you wrote. As I practice today I send you the peace and serenity it generates for me to help you with your sleep. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I was glad to read that you had some good pockets of sleep this weekend. I can only imagine how scared you were about your nightmare. In some way, I agree with you that this is how you are working out your concerns about being alive since Mattie died. The weekend produced some big steps for Peter and especially you, too. I know it took a lot of courage to clean those windows and paint the deck. By doing so, you did make room for light and an open passageway for your heart. Leaving the gel hearts on the window are beautiful. It is important to change your surroundings slowly so that you can gently regain your strength in the present. I believe that people rush too much to deal with deep grief. It doesn't let the body naturally come to a decision that it is ok to live when someone they love has died. This, I think, is especially true for a parent with the death of a child. Since we love them so deeply, as you have stated, it is difficult to want to go on without Mattie. Yet, go on you must, as Mattie wants you to take care of your business as he had to take care of his. It seems like Mattie came to visit again yesterday as you cleaned the window creations, you found the clay works. One door closes, another one opens! Did you add new pictures to the rotating gallery? I spotted some that I hadn't remembered at any other time. I was taken back to occasional weekend trips to a park near our house where I rode the ponies. Thank you for that wonderful reminder of my Dad, too. Horses remind us of the strength of an animal to carry us on their backs and the usual gentleness of their walk. It symbolizes the connection between man and his/her environment. We know that many clinicians are using animal therapy with seriously ill patients and the elderly to give them this reconnection with care and love. As always, you give so much to others just by sharing all these wonderful memories and your vulnerability in dealing with your challenges. I hope that you continue to have good pockets of sleep to aide your body's health. With love always and in all ways."

August 29, 2010

Sunday, August 29, 2010

Sunday, August 29, 2010

Tonight's picture was taken in June of 2009. Ann and her family went on a trip to Hershey Park, and she brought back a Hershey's kiss pillow for Mattie. The pillow was red, his favorite color! Though Mattie was NOT a chocolate person, he appreciated the softness of this gift, and of course being thought of. As you most likely can see in the background of this picture, there was A LOT going on. Right in front of the window, was a suspension bridge that Peter and Mattie built together. In addition to that, there was a Lego house creation in yellow behind Mattie, along with an airport in the back left of the picture. In usual Mattie fashion, there was a whole play scheme developing. Mattie was far from a couch potato. He never stood still, his mind and body were in constant motion. This was a blessing and a curse as a parent, because it took a great deal of creative energy to keep Mattie busy. I have no doubt though that it took his super human energy to fight the form of Osteosarcoma Mattie had, his disease was not for the meek, and he fought it like a champ.


Poem of the day: An Unexpected Gift by Charlie Brown

Who would think that such a simple task
Like painting the deck could bring tears?
Is it the memories that it invokes,
Or the covering over of your memory I fear?
It's been a weekend of ups and downs,
And one very special gift
I found some things of yours
I never knew to even exist.
Some artwork created by your hands
What an unexpected discovery,
Hidden away like a treasure trove
A belated gift from you to me.


I was sleeping peacefully last night until 4am. At 4am, I was jolted awake. I had a vivid dream that someone was trying to kill Peter and I. In fact, what woke me up in the dream, was that I heard a phone ringing. Peter answered the phone, and the killer was on the other end of the line. Needless to say, this was disturbing enough to me, that I awoke startled and couldn't return to sleep until after 6am. Naturally Patches heard me up and about and she began her meowing/moaning routine. I have had other dreams over the course of this year that focus upon our death. Usually some sort of untimely death in which we are being attacked or chased. Since this content is very atypical for me, my conclusion is this is how my mind is working out my fears regarding cancer and dying. Many months ago, Ann sent an email to her friends with various questions in it. One question was.... what do you most fear? My answer then and now is CANCER. I don't really fear death, I have seen what that looks like, but cancer is a threat that produces fear, pain, disability, depression, anxiety, and wreaks havoc on families. I guess what I am saying is I am working through what happened to Mattie consciously and subconsciously.

I spent the later part of the day visiting Mary (Ann's mom). Before the visit, I stopped at CVS to buy Mary some new nail polish and then went to Dairy Queen to get her ice cream. Mary requested ice cream yesterday, not necessarily from Dairy Queen, but she remembered the ice cream I brought her before and requested the same kind. Mary and I chatted a bit today while I was doing her nails. I think doing an activity with Mary keeps her busy, focused, and chatting. Yesterday it was ring cleaning and today it was getting a manicure. I am not sure what we will work on tomorrow, but she has me thinking. While Mary was having dinner, I sat next to her, and helped her, but basically made her feed herself. She was listening to what I was chatting about to her caregiver. I learned today that one of Mary's caregivers hasn't had a vacation in three years. There are various reasons for this, but the point was I felt great empathy for this woman. She has a 10 year old son who lives in another Country and she hasn't seen him in this time. Mary and I couldn't imagine not seeing our sons for three years, so I assure you it was a lively conversation, a conversation that most likely wouldn't have unfolded by itself unless I initiated it. Mary is a very social person, and I have to imagine this level of stimulation is good for her. The sad part is whether I spend five minutes or three hours with Mary, tomorrow she most likely won't remember that I visited today. With that simple fact, some of you may be saying..... then why visit? Or why visit for so long? I suppose my answer is, in the end I know what I did, and receive personal satisfaction from it, whether Mary can report about it or not. In the end, it is my hope that my presence makes her day just a little brighter, even if it is just in the moment, while her daughter is out of town.

I am happy to report that the deck has been successfully painted, not without incidence of course. This morning Patches snuck outside while Peter was painting and then came inside with paint all over her paws. I have learned that yelling at a cat with painted paws doesn't actually accomplish the intended goal. Instead the more I yelled the more she ran all over our carpets. At first, I was upset, but then Peter and I laughed it off! Fortunately the paint came off of everything, otherwise, I am not sure I would have remained laughing! I look forward to dinner outside tomorrow night, and I have missed being on the deck this weekend. Peter and I had another nice dinner together, and we continued to listen to musicals in the background. Tonight, we were literally playing 'name that tune' and also guessed who was singing each song.  

I would like to end tonight's posting with a message from my friend, Charlie. Charlie also sent me the "Story of the geese." I happen to love geese, and I have used facts about geese in many keynote professional presentations. We can learn a great deal from our geese friends, and I am happy to share this story with you tonight.

Charlie wrote, "I am sure it was difficult to pry those gels off, not just physically but emotionally as well. However, they do block the sun both literally and figuratively and perhaps this can be one step in clearing those things which are no longer so compelling so that you can find the more important things which lie underneath. It seems to me that in exchange for this difficult work you received a gift you might not otherwise have found had you not taken on this task. I love those "hands" that Mattie created; the colors are wonderful and how special that they spell out his name. They remind me of some wall art I've seen and I wonder if they could be fitted with hooks and hung up somewhere? I know you are concerned about the Betta fish you are caring for but I am sure it will do fine. I think Big Red was a visible connection to Mattie and that's why the fish did not stay. I heard George Strait's song yesterday when I was in the car and I immediately thought of you and Peter and I hope that you again find those good "moments that will take your breath away." Since you mentioned the geese, it brought to mind this story of the geese which for me symbolizes Team Mattie. I don't know if you've seen it before or not so here it is. As always I hold you gently in my thoughts."


Story of the Geese

As each goose flaps its wings, it creates an "uplift" for the birds that follow.
By flying in a "V" formation, the whole flock adds 71% greater
flying range than if each bird flew alone.
People who share a common direction and sense of community
can get where they are going quicker and easier because
they are traveling on the thrust of each other.
When a goose falls out of formation, it suddenly feels the drag
and resistance of flying alone. It quickly moves back into
formation to take advantage of the lifting power
of the bird immediately in front of it.
If we have as much sense as a goose, we stay in formation with those
headed where we want to go. We are willing to accept their
help and give our help to others.
When the lead bird tires, it rotates back into the formation
to take advantage of the lifting power of the
bird immediately in front of it.
It pays to take turns doing the hard tasks and sharing leadership.
As with geese, people are interdependent on each others' skills,capabilities,
and unique arrangements of gifts, talents, or resources.
The geese flying in formation honk to encourage
those up front to keep up their speed.
We need to make sure our honking is encouraging. In groups where there
is encouragement, the production is much greater. The power of
encouragement (to stand by one's heart or core values and to
encourage the heart and core values of others)
is the quality of honking we seek.
When a goose gets sick, wounded, or shot down, two geese drop out
of formation and follow it down to help and protect it.
They stay with it until it dies or is able to fly again.
Then, they launch out with another formation
or catch up with the flock.
If we have as much sense of geese, we will stand by each other
in difficult times as well as when we're strong.