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

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

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

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

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

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

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

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

July 25, 2009

Saturday, July 25, 2009

Saturday, July 25, 2009

Quote of the day: "Wise sayings often fall on barren ground, but a kind word is never thrown away.” ~ Sir Arthur Helps

Before I tell you about our day, I first want to thank you for remembering my birthday and for sending me e-mails, electronic cards, and gifts. That was very thoughtful of you because as many of you can imagine my birthday has a different kind of significance for me after Mattie was diagnosed with cancer on July 23, 2008. I thank all of you for your amazing support throughout this complicated journey, and if I could ask you to do one thing for me today, it would be to visit Mattie's LIVESTRONG dedication page and his Cancerversary page and sign them! Thanks for your consideration!

This morning neither Mattie or I could get up. We were both so tired. I was awake earlier in the morning, but I was so exhausted and figuring it was my birthday, I decided to go back to sleep. That was my gift to myself. However, before I made this decision, you should have seen the debates I had in my head about whether I should just get up at 8am, or go back to sleep. Finally, after a lot of counterproductive self talk, I voted on sleeping.

Peter's parents came over this morning, and while I was getting dressed, they were playing with Mattie. Mattie decided he wanted to sort coins. So we pulled out bags of quarters that we have, and he and his grandparents started to sort quarters by State. What they discovered was that they had quarters for every State except Delaware and California. I thought this was a fun, but productive activity. It gave Mattie the chance to learn about different States in our Country, and to see the design on the back of the coin, which pictures a significant symbol for the State it represents.

When I came downstairs today, everyone sang Happy Birthday to me, and Mattie gave me a big hug, which was lovely. In fact, last night, when Mattie and I took a stroll outside before he want to bed, he told me that he missed me while I was at the conference, and how much he loved me. This was totally unsolicited, which made it very special, and he couldn't have given me a better gift. Certainly presents are wonderful to receive on one's birthday, but for me, love and friendship demonstrated through words and action are what means the most to me. With that in mind, putting Mattie's illness aside, I am a very lucky person. I have discovered friendships this year that have blown me away, and through Mattie's suffering, I have received gifts that are far too meaningful to put a value on.

Mattie's buddy, Louise (a SSSAS recent graduate) came over today to take a picture with Mattie before she heads off to college soon. Louise brought Mattie a wonderful gift, a compass. It came in a beautiful nautical box, and Mattie was very intrigued by the compass. Especially since it reminds him of his love for boats. We will miss Louise as she heads off to Rice University in Texas, but we look forward to seeing her when she returns home from school breaks. Notice in the picture (though it is hard to see with the bright sunshine) that both Louise and Mattie are holding Rice sweatshirts, and Mattie is even holding an owl figurine in his hand (Rice's mascot). A very cute picture as Louise begins her next developmental journey.

I have been giving many topics which I was exposed to at the conference a great deal of thought. I am still processing all the things that were discussed, but one conclusion I have come to is that I need to begin to develop a new mindset. A mindset of healing. I have to be open to this, embrace it, and think positively. If I can't do this, this will only hurt Mattie. After hearing at the conference how much our own emotions impact others in our life, I began thinking about how I need to examine my fears and attitude (fears which I don't outwardly express to Mattie, yet these thoughts are constantly part of my internal dialogue), so that Mattie has the best possible chance at recovery. I am not saying that my actions are preventing Mattie's recovery, but I do freely admit that I am scared, and don't want my fears in any way to translate down into his thoughts and attitude. I am frightened to accept the fact that Mattie is cancer free at the moment, because I am always in alert mode and ready for the next shoe to drop. This is a very stressful way of living I assure you. In fact, I have yet to unpack our hospital luggage, and Peter's car is still loaded with all of our hospital supplies. I am not sure why I haven't dealt with these things. Maybe I haven't because to me I remain in a fighting mode, and ready to mobilize at any given moment if Mattie should become sick. These are issues I need to work through, but for now I can't come to unpack anything because I feel so uncertain, not knowing what will happen, and not sure I can allow myself to be lulled into some false sense of complacency about Mattie's condition. I guess I just feel if I unpack, I am saying things are normal now, when I know they aren't and may never be. It is almost analogous to losing a loved one. When you lose someone close to you, it is hard to go through his/her clothes, pictures, items, and belongings. In a way, by getting rid of these things, it seems as if you are symbolically removing the person permanently from your life. So it is not unusual therefore for family members to leave rooms and items untouched for a period of time, because this is not something that can be dealt with at the moment. Similarly I feel the same way about Mattie's hospital things. Having them around me and in order provides me great comfort. By unpacking or removing them, it means that I have forgotten or put aside this period in our lives and that I am ready to move on. Well I just can't right now! But as I mentioned I realize I need to work on this and establish a new mind set, for my own peace of mind. Living each day in this wait and see if the cancer comes back purgatory is almost as hellish as living with active cancer treatment.

This afternoon, I had wanted to go out to lunch and for a walk, but Mattie did not want to leave the house. He was very focused on scraping and painting the deck. This is the problem of starting a project of this magnitude with Mattie. He wants to complete it and won't divert his attention from anything else. I admire his conviction and determination, but I so wanted to have a change of scenery since I spend a great deal of time at home! Any case, we had a family lunch together outside on our deck, and one of our neighbors stopped by too, to give us some additional plants to put in our garden. After lunch, Peter, his parents, and Mattie went to Home Depot to pick out paint. There was no way I was going to Home Depot on my birthday, so I stayed home instead.

Peter snapped some pictures of Mattie painting this afternoon. Mattie had a good time getting full of paint and getting the job done.
Left: Do you love the way Mattie is painting?
Right: Mattie and Grandma painting.

This evening, I had the wonderful opportunity to celebrate my birthday with several of my Team Mattie supporters. I can't thank Ellen enough for hosting this party at her home. Ellen out did herself. She had a beautiful dining table set up on her deck, with candles, and flowers. It was a scene from a page in a magazine, that is how beautiful it was. Unfortunately it poured tonight and we had to move the party inside. But as I told Ellen, it did not matter where the party was. The location wasn't what mattered, what mattered was the people I was with and the spirit of the evening. I felt bad that Ellen worked so hard to set up everything outside, just to have to relocate everything inside. Being inside was just as delightful though. Ellen cooked us a wonderful dinner, and Ann spoiled me with her chocolate fountain. Thank you Christine for the delicious birthday cake, and I can't thank all the wonderful friends who came, chatted, celebrated my birthday, and surrounded me with gifts. These are amazing women, whose constant support, validation, and concern truly touch my heart. One thing Mattie's illness has provided me with was the gift of many wonderful friendships and the feeling of being part of a community. Tonight, half of the women were from SSSAS (Mattie's school) and the other half were from RCC (Mattie's preschool). It was wonderful to see these communities come together and unite. They made my day very special, and all their efforts will never be forgotten.

Left: A picture of the chocolate fountain. It was a treat for all of us. There is something special about chocolate, it just makes you feel happy and like a kid again. Perhaps this explains the many pounds of chocolate I have consumed this year. It is helping me along my path and search for happiness.
Right: Ellen's husband, Jeff, took a picture of all of us tonight. From left to right in the front row is Mary, Karen, Danelle, Debbie, Ellen, Vicki and Ann, and in the second row is Tamra, Christine, and Carolyn.

When I arrived home tonight, Mattie was still up. However, what concerned me and Peter was that Mattie's left knee was bothering him. Sure this knee could be hurting him for a variety of reasons, however, Peter and I can't shake the feeling that this "variant" that was found in his left knee could really be osteosarcoma. When I hear about pain, I panic! Needless to say, this pain tonight put both of us in a bad place. Not that we need any help. Oh God, how does one live with this constant fear and anxiety? There are nights I go to sleep and wish the next day I would wake up and life would be normal again. Life would be filled with health and happiness, and this nightmare would be just that, a bad dream.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think you did a great job this week Peter. Those of us who were at the conference saw Vicki busy and involved and clearly she could not have done that without your support at home this week. Mattie was in her thoughts and her comments but she was able to carry on, much as you do daily with your work. Sometimes swapping places gives one a greater appreciation for the other although I know both of you appreciate how much Mattie depends on each of you. Vicki, I know it is hard to understand why people don't say something when they see you; why they seem to be ignoring what is happening with Mattie. It isn't that they don't care, it is that they care too much and don't know what to say. If there are two things in this world that frighten people they are the illness of a child and cancer, when you combine these, people just freeze. They are so fearful of not knowing the "right" thing to say, that they say nothing. We want to be able to say, "I hope he gets well soon" as if this were a broken bone that will mend with no future effects and since we can't, we don't know what to say. We lack the words to say what we really feel; that we grieve with you for the loss of this portion of Mattie's childhood and of your professional life and we recognize that your lives will never be the same as they would have before this happened. I am sure that everyone who read your column and knows you feels this although they may not be in a position to say it. As one of our speakers so eloquently put it, "we lack the I-thou form in English" that could connect us in that intimate way and we are therefore encouraged to be much more distant and formal than we might be otherwise."

July 24, 2009

Friday, July 24, 2009

Friday, July 24, 2009

Quote of the day: "I cannot think of any need in childhood as strong as the need for a father's protection." ~ Sigmund Freud

Today, like all days, started the same. Mattie was up a few times at night and knocked off around 1am. I think he started to adjust to having me on point versus Vicki. I know Vicki is starting to adjust to not being on point either, but you can clearly tell that Mattie and Vicki miss their one on one time together. It's another validation to me that both Mattie and Vicki are intimately linked, not only as mother and child, but as "partners" against this fight for his life. Mattie has come to count on Vicki and I solely, but he has an extra special bond with Vicki. It is not one that I am jealous of, but one that I can clearly see is different. Mattie is a lucky boy to have a mom like Vicki, and I credit Vicki for her efforts as her actions, advocacy, love, sacrifices and convictions have maximized Mattie's chance of survival.
As some of you may remember/know, Vicki's birthday is tomorrow, the 25th, and yesterday's cancerversary and the events that occurred last year will forever cast a shadow on Vicki's birthday. Many of you have sent cards, emails, and gifts to Vicki, which she cherishes, and I think will help set the tone for the start of a better year ahead, God willing.
To all my readers, I am now back on line! I missed writing to you the past couple of days. I thank Peter for keeping the blog going, but I think balancing work, Mattie, and everything else was a tall order for him. But Peter did it! Peter had to go to work today, so fortunately his parents were here to stay with Mattie. In addition, Mattie had a special visit from Bob Weiman, Mattie's Head of the Lower School of SSSAS. As many of you may recall, Bob has been teaching Mattie magic tricks this entire year. Bob learned these wonderful skills from his father, and I am very touched that he is passing along this passion to Mattie. Bob went above and beyond today. He spent over two and a half hours with Mattie. Mattie learned TWO new magic tricks. One of the tricks is a little more complicated and Bob apparently reserves this trick for children in 6th grade. But Mattie learned the trick immediately, and I think this made Mattie feel very unique and special. So much so, that when I walked in the door this evening, it was one of the first things he showed me with pride. We want to thank Bob for bringing lunch for everyone and for sharing some wonderful stories on CD with Mattie. Our family considers ourselves quite fortunate to have Bob in our lives and we appreciate his support as we try to rehabilitate Mattie to enable him to go back to school in the winter of 2010.
Left: Bob and Mattie. Mattie is learning a new magic trick and is engrossed with the process.

Mattie had an afternoon of play with his grandparents and Peter. Mattie also listened to one of the books on CD that Bob gave him, and then Mattie and the rest of the family took on the project of scraping paint on our deck. They are motivated to paint the deck for me, since they know how much I like sitting out there. The crazy part about all of this is our outside is far more organized and neat than inside our house. Some days I wish I had a magic wand. I would wave it over ALL the clutter, and instantaneously it would go away. I could never believe what one could accumulate in a year if I did not experience it first hand.
As for myself, I have been running back and forth to the conference since Tuesday night. After three and a half days of this, I can truly say I am wiped out. I am taking tired to a whole new level, in which I can bearly keep my eyes open, yet I am surviving. The ironic part is I can think clearly for the most part, concentrate on session content, and conversations. I am not getting 100% of the information, because fatigue has indeed impaired me, but to my amazement I am functioning. In fact, on Thursday, I even escorted some of our members to Capitol Hill and we paid a visit to six different Senator offices, and lobbied our Association's position on Medicare reimbursement for licensed mental health counselors. I played an active role, and sometimes I wonder how I put two words together. I haven't had the opportunity to visit the Hill in years, but in a way it is like riding a bicycle, once you learn the skills, you don't forget them. The conference gave me the time away from home, but I had back to back meetings, presentations, events, and networking. So there was NO down time.
I had several touching moments at the conference. As you know I wrote an article about Mattie in my last president's column. Since I only heard from one or two members after the column was published, I figured perhaps this column wasn't of interest to others. As I began to see at the conference, this wasn't the case. I think people, even professional mental health folks, do not know how to address this topic with me. Their silence was that of uneasiness, and also not knowing what to say with such incomprehensible news. In fact, on Thursday afternoon, I was sitting at a table with a bunch of members I did not know. One member had the courage to thank me for my column and proceeded to tell me how much he got out of it. With that, others also spoke. I had a very meaningful conversation with this group about Mattie, and it seems to me, after that point, others also came up to me to acknowledge what I was going through. Many members told me they would be sending me resources and prayers. This all meant a lot.
I attended the conference's keynote presentation today, and found the discussion on the connection between the mind and the body fascinating. The premise was our emotional state influences our biological chemistry and cellular make up, and this emotional state is influenced by those around us. In the way, because we are social beings, when others around us experience a certain feeling such as sadness for example, then we as individuals can't help but absorb this sadness and be affected by this exposure. This exposure in turn can activate neurotransmitters, which ultimately not only cause neurons to fire, moving along messages in our cells, but on a more profound level these emotional messages can ultimately change the building blocks of our body, proteins. I found this whole discussion fascinating, because it makes perfect sense to me, but I never really focused on how our connections with others impact us not only on an emotional level, but also on a cellular level. The presenter also talked about individuals who deal with crises in their lives and how the emotional connections they make with others during this time can be very intense and crucial to survival. As he was talking, I completely related to what he was saying and have experienced this intense level of connections this year throughout Mattie's illness.
I even had the opportunity to connect with Charlie today as well. She was at the conference and surprised me with a birthday gift! I also had the wonderful opportunity to spend time with several of my counseling friends as well!

Before I left the conference, I text messaged Peter and told him it would be nice to go out to dinner tonight, so we could catch up with each other. When I arrived home this evening, Mattie did not want me to leave. However, Peter and his mom strategized a way to make this work. If I allowed Mattie to play a prank on me, then I could go out. So the prank I had to deal with involved rubber toy roaches. I was surrounded by them, and he hid them all over the kitchen. These rubber roaches look so real, they literally make me scream. The more screaming I did, the better he liked it! So needless to say, I earned my way to go out to dinner with Peter. In the picture you can see that Mattie covered Peter's foot with these roaches! Peter and I had dinner at our local restaurant in our complex, several of our neighbors were there and they came over to talk with us. In fact, some how the owner of the restaurant learned it was my birthday, and brought me out a piece a cake with a candle. It was very thoughtful! Peter and I never told her about my birthday, so I have no idea how she knew.

When I got home from dinner, Mattie worked with his grandparents on a birthday card for me. Mattie knows how much I love lighthouses. Even when he was a baby, we took him on lighthouse tours and climbed up many stairs to get to the top. So tonight, he decided to make me a 3-D lighthouse card. It was very touching. In fact, in the lighthouse keeper's house, the roof can be removed, and when lifted up, Mattie stuffed the house with beautiful cut out and hand colored hearts. Peter snapped a picture of our tender moment together as Mattie surprised me with my card.

Left: Vicki and Mattie with the lighthouse card!
Right: Grandad, Mattie, and Grandma!

We want to thank the Cooper family for a lovely dinner. Mattie and Peter's parents loved it, and we so appreciate your home cooked meal! Thank you for your thoughtfulness and continued support.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Peter, it sounds like you did a great job organizing the day on Thursday. Early physical therapy with the MTP later in the day was definitely the right way to go. I am sure Vicki was very relieved to hear how well things went even though she could not be there. Having Brandon and Jocelyn at the hospital to connect and play with Mattie was wonderful and definitely made the day go a lot more smoothly. I hope that Friday goes as well for you and Mattie as you manage without Vicki for the day. As always the blog is both positive and sad, I am thrilled that Mattie is recovering and working hard at PT and I am also praying that he beats the odds and the infusion of MTP is enough to kick-start his immune system into defeating any rogue cancer cells that maybe remaining as further chemotherapy is not currently an option. So both congratulations and condolences on this "anniversary," one that we hope eventually no child will ever have to face again."

July 23, 2009

Thursday July 23rd, 2009

Thursday July 23, 2009

Mattie's Cancerversary.... a date that will forever be burned into our minds.

Quote of the day: "Any man can be a father, but it takes a special man to be a daddy." ~ Anon

Today marks the one year anniversary that Mattie was first diagnosed with Ostesarcoma. As I mentioned before, both Vicki and I hold this date in their minds. It was on July 23, 2008, that we first were told of Mattie's illness.

So one may ask what is a cancerversary. It's an important date in any one's struggle with cancer. For us, seeing our six year-old son, the picture of perfect health, suddenly and certainly struck down with a life threatening illness was a turning point, and a forever changing moment in our lives. Our boy was from that point, different, challenged, impaired and on a course that threaten his sweet life.

My heart has been heavy all week, no, make that heavy all month as we move one more day away from the cancer fighting chemo that we have come to rely on for so many months to help us in this battle against Mattie's disease. It's a thought that perpetually plagues me during my waking and non-waking hours. It's a question and a doubt, and most brutally a vicious presence that never, ever goes away, no matter where you are or what you do. No matter how special and wonderful a moment may be, it is there, watching us and waiting....

It comes down to this: there is a killer running amuck in our child's body. A killer so insidious, so deceiving and so vicious that nothing can stop it or even apparently touch it. This situation leaves us feeling helpless, hopeless, and powerless.

Mattie had a great PT session today. Yesterday, I asked Anna to move Mattie's 3pm session today to 11am since Mattie had an afternoon clinic and MTP administration session planned. Typically when he gets MTP he cannot do his PT. So this morning I schlepped my parents and Mattie to PT and it was a wonderful session. Anna is such a gifted and special therapist, and I want to congratulate her on passing the Boards for being a certified Pediatric PT. She is truly one of our Georgetown stars and Angels on the ground!

Okay, I couldn't resist (I am having blog withdrawal), Peter's mom took some great pictures today, and Peter was too tired to post them, so I logged back on to attach them! Enjoy!

Left: Mattie balancing on a board that in the past deathly frightened him. Anna and I have tried to get Mattie on this before, but apparently Peter's presence was needed to build up Mattie's courage.

Right: Mattie and Peter having a tug of war on scooters!

Left: Mattie using his arms. Anna is on the scooter, and Arlet (a PT assistant) is spotting Mattie.
Right: Mattie is throwing heavy weight balls at Anna. Got to loves Anna's expression as she is getting hit with these balls!

I forgot to mention that in passing through the halls of Georgetown I bumped into several personnel that we have come to know and in some cases, consider part of our family. We saw Jey, Mattie's CT buddy and a true friend standing by one of the elevators. Jey has and continues to always be there for us, and his presence makes everyone just that much more comfortable.

The real treat today was clinic, and Mattie was all geared up for it, because somehow he knew that his buddies Brandon and Jocelyn would both be there, and as usual these two did not disappoint. Jocelyn and Brandon both greeted Mattie with loud roars of welcome and comforting ways, such that Mattie instantly forgot about me, my parents, and just about everyone else in the clinic, and focused on Jocelyn and Brandon. Mattie was COMPLETELY engrossed the entire day with their play, which made things very easy for me. Mattie, Jocelyn, and Brandon had their boat race rematch. Check out the boats, the fact that Mattie is standing, and is using his arms in incredible ways. Anna came up to the clinic to celebrate "Sarcoma Day" and was thoroughly impressed with what she saw Mattie doing.

At one point Mattie, Brandon and Jocelyn had the entire clinic engrossed and involved with their project. We are proud to introduce you to the clinic's newest addition, "Dr. Crazyhair!" Both Jocelyn and Brandon are truly special people who deserve all the very best in life.

Towards the end of the afternoon, Mattie started shutting down due to a reaction to MTP, which he had received earlier in the afternoon. We were shuttled off to a room and Dr. Gonzales came in to assess the situation. After a small fever, chills and irritability, Mattie rebounded and was ready to go home.

So I want to thank so many people today. I can see why Vicki considers the people, and not the place as the defining moment in our lives.

I want to thank the Isaacson's for a wonderful dinner. It was filled with treats, so thank you very, very much. We loved it all and value your support!

So I will say so long for now. God Bless Mattie and his Cancerversay today, and most importantly: thank You! for all that you do!

Vicki's friend, Charlie wrote, "I'm sure Wednesday was a tough and confusing day all around. Trying to balance work and Mattie's needs is a task for a high wire walker. I am always in awe of how you and Vicki seem to manage it. I am sure you feel torn no matter which one (work or Mattie's care) you are dealing with. It was great to see the photo of Mattie working on the parallel bars; he's come so far and yet I know he still has a long way to go. I am glad your parents are there to help out; hopefully this time will help Mattie build an enduring bond with them. Mattie is still in a pretty concrete stage of understanding; it might help if you sat down and explained how things are this week with work and perhaps even set an alarm clock so that he knows at what point you are "off work" and on "Mattie time". I hope the MTP infusion goes well on Thurs with as little reaction as possible. I know Vicki will be thinking about Mattie all through the day even though she can't be there."

July 22, 2009

Wednesday, July 22nd, 2009

Wednesday, July 22, 2009

"Love is space and time measured by the heart." - Marcel Proust

Hi everyone. This is Mattie's Dad, Pete writing the blog. Just to prepare all readers, I will be writing the blog over the next few days since Vicki is attending the national mental health counselor's annual conference (here in DC), and will not be with us for much of the day. So, my apologies to all of the loyal blog readers who are used to reading Vicki's prose each day. Unfortunately, you are stuck with me.

Mattie had an average night of sleep last night, only popping up twice, but he had an accident around 5am, so I scrambled to clean him up and get him back on the path of sleep. I am balancing working each morning and then taking the afternoon off for Mattie's PT and clinic appointments this week, but my day began just after I got Mattie back to sleep this morning. I got on email, then phone calls with some of our Africa and India-based offices, and before I knew, it was 11am and I still had a few hours of phone calls and meetings to go. Fortunately, my parents came over at 9am (they are down from Boston to help us), and were here to help deal with Mattie, who woke up at 10am.

Mattie was very clingy this morning with me, which presented some problems, but my mother captured his interest by offering Mattie waffles and to sit with him and watch a DVD, which he warmed up to and ended-up enjoying immensely. It was a big relief for me to have this coverage as work continued to pile-up on me. Although I had booked each afternoon off from work, I am working for a small, start-up technology company, and the work never really stops (as in there are no boundaries). Having personnel and projects that I am responsible for spread over eleven and a half time zones and on four continents makes for a very long working day. Balancing work and dealing with Mattie's situation has never been easy. I am constantly torn between being there for Mattie and my commitments at work. I do not wish this on anyone.

I finally cleared my work items by 1:30pm and then Mattie, Grandma, Grandad and I piled into the truck and sped to, where else, the Lego store, where Mattie scored a nice Lego. After securing a individual pizza from Subway for Mattie, we sped to Georgetown for Mattie's PT appointment. We had a great session with Anna, and Mattie accomplished a lot. It was particularly great to actually see the PT session and to see Mattie moving.

As many of you know, back in April, Vicki and I changed our approach to coverage with Mattie. Being both burned out, we agreed that where and whenever possible, we would go to single (as in only one of us) coverage with Mattie. Vicki, unfortunately, bears the majority of this burden, but with Vicki on point each day and week night, and me covering Mattie for a few hours each night as well as "taking shift" on the weekend night, we try to spilt some of the burden. Without question, Vicki continues to perform the heavy lifting with Mattie's situation.

We returned home and instantly Mattie wanted to launch into building the new Lego acquisition. I had to check in on work, and although Mattie opened the Lego box, and laid out the instructions and pieces, he refused to build the Lego until I was available. Although my parents tried to engage him, Mattie was clearly defiant and would not budge until I was at hand.

Mattie and I then had a blow-out. The reasons for the blow out are not important, but needless to say it was disturbing. Mattie was clearly confused as to why I was home but not available to play. I think this clearly bothered him all day, which upon reflection could explain a lot of his actions and attitude today. I know I should be flattered that he really wants to spend a lot of time with me, but given all that was going on today, I just could not properly frame all of it.

Vicki arrived home about 9:30 tonight after a full day at the conference and ended up processing the day with Mattie and I, particularly our spats, before she even got a chance to relax. I think Vicki completely understands what I went through today, as she goes through this most days of the week, and it was comforting as she quickly understood my trials and tribulations today.

We want to thank the McCleary family for a delicious meal tonight. I loved the fresh corn on the cob and the tomato salsa was divine. Vicki has already started on one of the cupcakes so thank you!

Mattie headed up to bed around 10:30 tonight and I will stay with him again tonight. We have a PT session at 11am and then MTP tomorrow, so it should prove to be a full day. Once again, sorry this is not Vicki writing, but she will be back shortly.

Vicki's friend Charlie wrote, "Vicki, it's clear that Tues was a really busy day for you as according to the blog it was the second Monday of the week. I often feel that way myself. I was really impressed by Mattie's desire to reconnect with the nurses up on the HEM/ONC ward. It speaks volumes about his newly found self sufficiency and his rebounding self esteem with regard to his body image. I think you have handled this brilliantly. While Mattie is now off all his pain and anxiety medications, his body is still recovering from the ravages of the treatment and he tires pretty easily; thus once he has reached the limits of his tolerance he has a meltdown. As he eats more and gains strength he will be able to go longer and the meltdowns will occur less frequently. I know the tantrums are frustrating but try not to overreact to them as that will give them an importance they don't deserve. I can just imagine how difficult it was for you to go to the conference and feel as if it was the critical place to be. In your heart, what you've put so much time into is no longer of pressing importance. I think we all need to step back occasionally and reevaluate what we feel is important in our lives; you've given us all that opportunity with this blog and you continue to remind us to keep our loved ones close and connected to us as that is what really counts."

July 21, 2009

Tuesday, July 21, 2009

Tuesday, July 21, 2009

Quote of the day: "I believe that every human mind feels pleasure in doing good to another." ~ Thomas Jefferson

Mattie had a busy day that started at 8am. Mattie had an appointment with Dr. Biel, his psychiatrist, in the early afternoon. Mattie looks forward to his appointments with Dr. Biel mainly because Mattie thinks he is going there to play. They have a good rapport with each other, and I am happy to report to Dr. Biel and to all of you that Mattie is no longer experiencing any "strange" feelings or emotional outbursts like he did last week, when we weaned him off of anxiety and pain medications. Amazing to watch your seven year old going through withdrawal symptoms. Mattie still needs "medication" to calm his pains at night so he can go to bed. But the only thing we are giving Mattie now to "help" him sleep is Tylenol, and soon even that will disappear. I am thrilled to have him off all narcotics! Congratulations Mattie!

After Mattie met with Dr. Biel, we sat outside in his favorite spot at the hospital, and he had some lunch. However, in the midst of eating, he saw two people who looked familiar to him. So he had me stand up to see if I recognized these individuals. When I said no, the next thing Mattie requested from me truly caught me off guard. Mattie wanted me to take him to C52, the PICU. I was stunned! He wanted to see his nurses. So we took the elevators to the fifth floor, and before we headed into the unit, we checked to see if Linda was in her office. We did find Linda, and Linda helped bridge the way for Mattie. She helped us get in through the security doors in the unit, and even located Tricia and Kathleen for us! Tricia and Kathleen were THRILLED to see Mattie. They loved his hair and enjoyed touching it, and both felt that Mattie looked great. They made a big deal over him, and his Lego creations that they have seen on line. I am not sure what to say about the fact that Mattie's HEM/ONC nurses read Mattie's blog. These are women who live and breathe cancer each day, and yet in their spare time they want to check in on their patients by reading a blog. I am deeply touched by the connections they have made to Mattie and to Peter and I. This is why I always say being a HEM/ONC nurse is not only a profession, it is a lifestyle, because their care and compassion does not end with their 12 hour shift! I was so intimidated to go back to the floor, but the nurses and Maria (one of the PICU administrative support staff) made us feel welcomed again. In a way my family is in transition. We are in transition to finding our identity. We no longer live in the PICU, and yet we clearly are not part of the "real" world either. So where does that put us? Not sure! Thanks Tricia and Kathleen for a nice visit and your support that reaches outside the PICU walls.
Pictured in the back row is Vicki and Bernadette (one of the nurse techs in the PICU), and in the front row is Tricia, Mattie, and Kathleen.

Linda let us know that CR (short for Cecilia Rose) was visiting Georgetown today. CR was one of our great HEM/ONC nurses who we met in the fall, before she left to work for the Peace Corp in Ethiopia. CR is now an HIV/AIDS educator in Ethiopia and it is fascinating to hear her stories and the cultural experiences she is having there. Despite CR being so far away, she still stays connected to Mattie's story and even signed his LIVESTRONG dedication page! After stopping by the PICU, we headed to clinic to find CR. Pictured on the right is Brandon, CR, and Mattie. I truly enjoyed our visit with CR and I hope at some point she comes back to Georgetown to work with children who have cancer. She just has the personality, disposition, and healthy life perspective needed for this challenging job.
While in clinic for a short period of time before physical therapy, Mattie challenged Brandon to another boat racing contest. Last week you may recall that Mattie and Brandon built boats with the help of Jocelyn and her sister, Hannah from materials they found in clinic. Mattie won last week's race, but apparently Mattie wanted to test fate. So Brandon and Mattie made boats out of tinfoil this afternoon. Mattie is very much into this competition and Brandon is a good sport about the whole thing. It was a nice surprise to see Brandon and his mom today, and I am happy to hear that Brandon will be around this Thursday during Mattie's clinic day. Thursday the clinic is hosting a Sarcoma awareness day! Many osteo children and their families will be present for this event, and I am disappointed I won't be there to meet them. However, Thursday is our one year anniversary of Mattie's diagnosis. A day Peter and I will NEVER EVER forget. Ironic that the Sarcoma Awareness day falls on Mattie's anniversary!

Left: Brandon, CR, and Mattie sitting at the art table, designing tinfoil boats!
Right: Brandon's boat is on the left with green tape, and Mattie's boat is on the right with yellow tape.

Mattie was so excited about the boat race, that he got up out of his wheelchair and stood at the sink with Brandon. Jessie, one of Mattie's art therapists, was the judge of the race. Mattie and Brandon tied in the race, but the race was judged based on beauty, silliness of design, and buoyancy! So needless to say, Mattie has big boat race plans for Thursday's clinic visit!
Mattie then headed to physical therapy with Cathy, Anna's colleague. Cathy is really trying with Mattie, and he did fine for the first part of therapy. Mattie had me riding scooters with him, doing sling shots of bean bags across the room, and a host of other activities. However, toward the end of the session, Mattie had to stand and walk using the parallel bars. This is where Mattie became upset. He did walk through the bars once, but after that point he had enough. He did not want to do any more and certainly did not want to stretch. He started to become VERY upset. He wouldn't look at me, and began crying. The crying continued into the parking lot. However, once the car was moving, he fell asleep from exhaustion.
I headed to the conference reception tonight, and Mattie stayed with Marisa for about an hour before Peter came home. Then later this evening, Peter's parents arrived and spent some time with Mattie. Mattie is having a great time with them. By the time I got home from the reception, dinner had arrived thanks to the Bires family (we appreciate your continued support!) and was on the table. So I joined everyone for dinner, and then afterward proceeded to write tonight's blog. I have an early 7am start tomorrow, God help me. By the time the week is over, I may need my own private PICU! Attending the reception was an awkward feeling for me tonight. Awkward because I don't feel like this is part of my life anymore, funny, something you have spent your life studying and working toward for years, can be replaced instantaneously. In fact, instead of outside events cheering me up and giving me a break, the only thing many of them consistently provide me with is sadness. Sadness because this isn't my life anymore, I can't relate to it now, and in many respects I have seen, felt, and lived through things that some people can never understand (THANKFULLY, of course!). After dinner, Mattie crawled over to me, worked his way to a standing position and literally sat on my lap for over 20 minutes. He was cuddling and clearly missed me for the few short hours I was gone. It is moments like this when I truly appreciate this closeness, and frankly everything else around me could be going haywire, I don't care, because I have the need or maybe the healthy perspective now to appreciate and savor these tender times.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Monday's blog just confirmed what I have always suspected. No one can "see" what is right in front of you consistently. This is one of the reasons we send our children off to summer camp, so we can get a break from them and see how much they've grown and matured. I am glad that Linda was able to point this out for you because when you see Mattie constantly it is impossible to evaluate him objectively. I was very touched by Mattie's attempts to care for you, to offer you his medications, to entertain himself quietly so that you could rest. This is a huge step forward for him and was probably impossible just a few months ago. It shows that the caring and love you give Mattie constantly are watering a fertile field and that the "crop" of empathy as well as other positive emotions are beginning to reemerge. Although we'd like it all to be just what we are trying to encourage, even the best fields have some weeds (misbehaviors) that need to be discouraged. I know that with your excellent mothering and counselor skills that this will happen."

July 20, 2009

Monday, July 20, 2009

Monday, July 20, 2009

Quote of the day: "The language of friendship is not words but meanings." ~ Henry David Thoreau

As usual, Mattie had a hard time falling asleep last night. However, close to 1am, he finally just put his head down and went out like a light. He woke up a few times during the night, but then went back to sleep quickly. However, neither one of us could get up this morning. Since I am still working on things for the conference this week, I forced myself to get up to do things, otherwise, I knew I would never get them done today.

When Mattie woke up this morning, he entertained himself with Legos, while I took a shower and got dressed. Before I proceed to get ready, I always check with Mattie to see if he needs something before I get into the shower. This morning he said no. While I was in the shower, I heard Mattie screaming. It is hard to hear screaming with the water running, and being on a different floor, but I think mothers are programmed to react to certain sounds. Of course when I heard screaming, I got worried, because I have no idea what Mattie was screaming about. So needless to say, I came flying out, soap and all. It is times like this where I realize I have NO peace in my life. I can't do anything for five minutes without getting bombarded with an issue or problem. For the most part, I just accept this as my life, but there are days like today, where this gets to me. So you may be asking what was Mattie screaming about? He was screaming because he had to go to the bathroom. Mind you I asked him two minutes before if he had to go, and he said no. Needless to say I expressed my dissatisfaction.
Mattie and I played for several hours today with his Lego train set. Mattie seems to like to see the trains collide and derail, and then gets a kick out of repairing them. Lovely! As the afternoon rolled around, we packed up and headed to the hospital for his elbow x-ray. When we got to the radiology department, Linda met up with us. Linda entertained Mattie, with a wonderful bean bag tossing game while I filled out paperwork for insurance purposes. Because you know I clearly haven't filled out enough paperwork this year. Linda helped us secure Theresa, Mattie's favorite x-ray tech for his pictures today. Mattie handled the x-rays very well, and Linda was commenting on how mature and more at peace Mattie looks now. Now that he has been living away from the hospital. I guess I never thought of this or have even seen these changes in Mattie. I appreciate Linda pointing them out though. I think I haven't observed them mostly because we are dealing with a whole host of other issues at home, and I spend every second of each day with Mattie. That alone can breed problems. We love our children, but I don't think we were meant to spend every second of every day with them or anyone else for that matter. Without distance, perspective, and other experiences, it is easy to get on each other's nerves. Though despite the fact that we spend an inordinate amount of time with each other, we love each other, and respect each other deeply.
After the x-rays were done, we said good-bye to Linda and hello to Anna. Anna wasn't feeling well today, so you will see she is wearing a mask to protect Mattie for any germs. Anna actually sounded and looked fine, but I appreciate her taking precautions around Mattie. Mattie came into physical therapy today tired and with a bit of an attitude. I am hoping that the novelty of going to the clinic hasn't worn off. Mattie refused to stretch his leg today and to stand and walk. In fact, Anna suggested that Mattie wear a heating pack on his knee in the first half of the session to loosen up his muscles, so that the stretching later would be easier. But he refused to use heat, and at times to help himself. It is moments like this, I get very frustrated with him. I don't express my true anger over this, but instead I try to rationalize with him. But this is the main challenge of dealing with a seven year old. The logic is faulty, he can't reason that following Anna's advice, though painful initially, will benefit him in the long run. In addition, to his attitude today, he had me participate in some of his exercises, like scooter racing. I certainly don't mind racing him if this will inspire him, but this is another example, of where Mattie doesn't afford me a break. I was observing another mom who came to therapy and she was sitting reading a magazine while her child was working. I have never had such a child, and am always in amazement of those moms who seem to be able to capture this time for themselves. Needless to say, Mattie and I are both getting therapy, which after a year of inactivity, I tell Anna that isn't a bad thing for me.

I snapped some pictures of Mattie during therapy today. You can see him working on strengthening his right leg.
Left: Mattie on the swing. Anna had Mattie balance and hold his full weight on his right foot.
Right: Mattie bracing himself with his right foot, as he is riding down a ramp on a scooter. This actually takes a lot of strength to do, and really exercises Mattie's right leg muscles.

Left: Mattie strengthening his arms. He had to pull himself across the room pulling a rope, while riding a scooter.
Right: Mattie having a tug of war with Anna. Molly (a hospital volunteer) sits behind Mattie to support him. Check out Mattie's facial expression! It is priceless.

Once therapy was over, I could tell I wasn't feeling well. Not because of therapy, but I was just very tired and felt like I had the flu, without having symptoms. I just felt very worn out. As I transferred Mattie to the car, I told him I wasn't feeling well and that my stomach bothered me too. Mattie was very funny, he offered me his Kytril (an anti-emetic), his prevacid (for acid reflux), and his pain medication. I started laughing. I told him we can't share medicine, that it is just for him. He said he would be happy to give me some if it would help. I thought that was cute. When we got home, I made Mattie something to eat, but I still wasn't feeling well. Mattie could tell I was dwindling, so I decided to lie down on the couch with a pillow and blanket while he was playing. Something I RARELY ever do! For the first time ever, Mattie did not bother me, wake me up, or pester me to play. In fact, when Peter walked in the door from work tonight, Mattie told him to be quiet because I needed to rest. I really appreciated Mattie's empathy, and of course Peter's support.
We want to thank the Bartlett family for a wonderful dinner tonight. Thank you for your continued support and help. We had this lovely dinner outside, despite the fact it was drizzling. At dinner, I couldn't really eat, but sat there, and slowly through talking with Peter, pulled myself together. After about an hour, I felt a bit better. As we head into Tuesday, Mattie has his therapy appointment with his psychiatrist and then physical therapy with Anna. Right after therapy though, I have to run home and get ready for the conference, which starts tomorrow evening. Wish me luck and strength as I have three intense day and nights ahead of me this week. I question whether I have the stamina for this!
In addition, tomorrow evening Peter's parents are coming in from Boston to help entertain and care for Mattie while I am at the conference. This will give Peter the opportunity to do some work, and yet be around to transport Mattie back and forth for his MTP treatment and physical therapy appointments. I also wanted you to know that Dr. Bob did call me tonight with the x-ray results. Like we suspected the same issue that is occurring in Mattie's left wrist, is also happening in Mattie's right elbow. In this particular case, the radius (one of the long bones in the arm that extends from the elbow to the wrist) cap is growing and therefore explains the bulg I am seeing by Mattie's elbow. Now the question becomes what to do with this wrist and elbow issue. I know Bob knows, and I guess I know on a deeper level than I care to accept or admit right now.
I would like to end tonight's posting with three messages I received today. The first message if from my friend, Charlie. Charlie wrote, "So glad you got some alone time on Sunday; we all know what that means to you. You have taken the correct position with regard to the Legos with Mattie I believe,; it is one of the few things that can consistently involve and challenge him. Perhaps you can do as you intended to with the Taj Mahal and bring in the background or read/write stories about some of the items he chooses to build. I was delighted to hear that Mattie was involved and moving about in his playing with Charlotte; clearly that friendship is one that goes above and beyond the average and tells you how valuable a gift friendship can be. The pictures of the two of them are priceless; Charlotte is indeed a good sport and a wonderful role model and friend for Mattie. I will pray about the upcoming x-rays and hope the news is good."

The second message is from my friend and colleague, Lisa. Lisa and I went to graduate school together, and now we have the exciting opportunity to work on a textbook publication together. Thank you Lisa for the support and for believing in me professionally as well. Lisa wrote, "I am sending you this message to simply wish you a special birthday and special year. I have very few words this morning, other than you are special and deserve so much this upcoming year. It is interesting because when I first met you in 1998, I thought Vicki is smart, a wonderful leader, and very kind. I liked you and appreciated you. As time wore on, I thought no one I would ever meet would be a more wonderful mom then my sister, but you and my sister are in fact the very best moms I know. So now I have added to the list from 1998, Vicki is one of the best moms I know alongside my sister. In fact, you may think this it is weird, but after being by your side everyday (of course from afar--but yes, I think of you, Mattie, and Peter everyday) and sharing in your trauma virtually, I feel like you are my sister too. But when I think of you on your birthday this year and the hell you went through this past year one word comes to mind: hero. Vicki you are a true hero. And you have good things coming your way, this I know for sure. You may have been to hell and back, but my guess would be you are smarter, wiser, better, bigger, more loving and forever changed. I am proud of you, Vicki. You are my hero. You and the situation with which you have been faced has made me cry, smile, cheerlead, and get angry. As you prepare for this next year, this is what I know for sure (I think). Vicki, YOU have turned a corner. The corner may be small and slight, but you have turned a corner. Forcing yourself to go out, have dinner on the deck, and maybe even cook all are the best medicines the doctor could order on your birthday. Please keep doing them. Finally, when I read the blog last night, this is the other thing I know for sure (I think). MATTIE has turned a corner. If you go back to the blog, and look a the fourth picture from the top (under Sunday) this picture "looks like" a child who has turned a corner. This picture reflects something different in Mattie. This look I hope you will celebrate. As I read about your Lego house, I smiled. In part, Legos are Mattie's medicine. My guess is that he finds the process therapeutic. Think about it. It is something he can do well, he has mastery over the process, and completing each project says to Mattie's mind's eye: "I am good at something." "I still can do things." "I am smart, I figured this LARGE challenging Lego project out." My guess is that these projects build his confidence, and allows him to use the skills he still fully has and compensate in a healthy way for the skills he has temporarily lost. He can thrive with Legos."

The last message is from Coach Dave. Dave is the head football coach at St. Stephen's/St. Agnes School. Our family had the wonderful opportunity to meet Dave this year, and we are honored to call him a friend. Coach Dave wrote, "I wanted to let you know that Evelyn and I are thinking about you and Mattie all the time. He is such a strong individual and the two of you continue to do amazing things. I read the blog and wanted to echo the sentiments of the school. Mattie and you both are a huge part of the SSSAS community. I cannot wait for the day that Mattie returns to classes at SSSAS. The football team was up at Gettysburg College the past week for our football camp and a bunch of the guys were asking about Mattie. They are excited for practice to begin so we can take a new team picture for Mattie. I am sorry to have been out of touch for awhile. Please know that not a day goes by that Evelyn and I don't think about you all. I cherish my Mattie bracelet and find it incredibly inspirational particularly during difficult times. I love his smile and his mind. He is so smart. Evelyn and I are looking forward to being able to deliver a meal to you in the near future. Please let me know if I can do anything else. You are always in our hearts and thoughts. Please tell Mattie that I said hello and that the football team is thinking about him."

July 19, 2009

Sunday, July 19, 2009

Sunday, July 19, 2009

Quote of the day: "How far you go in life depends on you being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ George Washington Carver

Mattie was in an excited mood today, because he was getting to go to his favorite place with Peter. Can you guess where this is? If you guessed the Lego store at the mall, you would be correct! While Mattie and Peter were out, there was complete peace and quiet around me, which I can assure you is very welcomed. I spent the beginning part of the day resting, and then doing chores like laundry and grocery shopping.

While I was out shopping, Mattie and Peter started building a Lego train and track set in our living room. I am trying to come to peace with the fact that my home is turning into a Lego factory. Over the course of this last year, we have collected quite a number of Legos! These are the only things that consistently bring happiness to Mattie. He gets a certain amount of joy with the challenge of figuring out how the Lego bricks connect together, and of course he loves the sheer joy in building and creating something. Under normal circumstances, I would hope Mattie would diversify his interests, but at this point, I support whatever motivates him and brings him some happiness.

Later in the afternoon, we all headed to Ellen's house (Charlotte's mom). Ellen invited us over for dinner and a playdate with Charlotte. Ellen and Jeff served dinner outside on their deck, which was lovely. I embrace fresh air always! It was lovely to see Mattie reconnect with Charlotte. The irony is, Mattie held his own physically. He did a lot of moving around on his rump, but he also attempted to stand, and grab things like tables in order to walk around. To my amazement Mattie also maneuvered his way up and down steps on his rump. He showed no fear! Of course internally I was not comfortable with this, but I did not let it show. I know he needs a certain level of freedom back, and once I assessed he was moving around safely, I walked away, and let him be. But I can assure you walking away WASN'T easy for me.

Mattie and Charlotte played all sorts of imaginative play, and Mattie literally moved all over Charlotte's house, inside and outside. I guess when motivated, and with a friend, anything is possible. That is the key word, a friend. Throughout this year, Peter and I have learned the true meaning and value of friendship. We have a core group of friends that work hard to secure our happiness, even when all hell seems to be breaking out around us. It is always special to see Mattie and Charlotte connecting, because on some level it reminds me of "old times." When they were in kindergarten together. That is a time in his life I wish I could recapture for him and us, and when I see him laughing with Charlotte, for a moment I forget about our year of torture, and just reflect on their friendship.

At dinner time, Mattie wasn't very motivated to sit at the table with us, however, he became motivated when he had several eating competitions with Charlotte. Mattie and Charlotte competed to see who could eat all their flank steak, then corn on the cob, and finally a tomato. Well this race to the finish worked like a charm! Mattie ate more tonight than I have seen in a while. Mattie even encouraged Charlotte to eat a fresh tomato, which she isn't wild about. But because Mattie wanted to have a tomato eating contest, Charlotte was a good sport, and attempted eating a tomato. You can see in the picture on the left, Charlotte's reaction to eating a tomato. We were all laughing hysterically! In the picture on the right, Mattie and Charlotte were having a meat eating competition. However, after Mattie finished the meat on his plate, he was going to help Charlotte and eat hers too!

Left: The tomato eating competition. Clearly tomatoes are not one of Charlotte's favorites. But she was a good sport, and wanted to be part of the tomato eating race.
Right: Mattie attempting to eat Charlotte's meat.

I can't thank Ellen and Jeff enough for including us in another wonderful family meal. Charlotte's sister and brother were home for the summer, and it was nice to be able to catch up with them and hear how they are spending their summer. We feel very lucky to be able to connect with Charlotte's family, and can't thank them enough for their dedication, support, and care for our family.

As we head into Monday, Mattie has an x-ray scheduled of his right elbow at 2pm at the hospital. I think Dr. Synder and Anna believe that Mattie's bones by the elbow are growing at different rates, and therefore it may explain why things look askew by his elbow. However, I would like to hear this confirmed from Bob. It is hard enough to look at Mattie's body deformed with scars from surgery, but now factor into the equation that his bones are growing at different rates (because you need to understand that in almost all of his surgical sites, the growth plates in the bones were removed) and this further compounds my emotional reaction to this illness. It may be hard for you to understand why bones are growing at different rates. I know I had a hard time grasping this at first. So I will give you an example. In November, a tumor was removed from Mattie's left radius (one of the long bones that extends from the elbow to the wrist, the tumor was at the wrist). The tumor went through the growth plate, which regulates growth. So when the tumor was removed so was the growth plate. The other arm bone that extends from the elbow to the wrist and is parallel to the radius is the ulna. The ulna was unaffected by osteosarcoma, so it remained intact. Therefore the ulna has its growth plate. So the reason Mattie's wrist is twisted, is because the radius at the wrist isn't growing (no growth plate) and the ulna at the wrist is growing. Perhaps the same thing is happening in Mattie's right elbow. The x-ray will hopefully confirm what is going on, and a part of me is afraid to ask how this is corrected. I guess I know deep down the answer is through surgery, but really, how much can one child and family handle? For osteosarcoma families this is a rhetorical question, that has NO answer. After Mattie's x-ray tomorrow, he will have his physical therapy session with Anna.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you Vicki for the lessons you continue to teach us. We have a tendency to close our eyes to the unpleasant and to think that this will not happen to us or to someone we love and cherish. But of course it will, we will all age and we will all need help and will that assistance be there if we don't step up and make it be what it should be. Something to think about and for anyone who can, to begin to make things better, one person at a time. The project that Mattie (and Peter and you) completed of the Taj Mahal is amazing. I've seen lots of pictures of it and this Lego project looks amazing. What a wonderful idea to turn it into a lesson about geography and history now that the building is completed. Mattie has completed so many Lego projects which you have been kind enough to share with us, that perhaps a "picture" book of projects would be a good way to remember them before you have to take them down."