Saturday, January 3, 2009

Saturday, January 3, 2009


Quote of the day: "And in the end, it's not the years in your life that count. It's the life in your years." ~ Abraham Lincoln




I decided to join the land of the living today. My head still feels like a watermelon, and I am quite congested and can't hear out of my ears still, but I am ramping up to functioning solo by day next week. I am so thankful to Peter and proud of him. He handled everything this past week, everything from Mattie's care to looking after me, which isn't easy to do. There is a special place for him in my book!


Mattie requested that Caroline, his piano teacher, come visit him today. Mattie loves Charlie Brown's Christmas movie, and he especially likes the music in the movie. Starting with "Oh Christmas Tree." Mattie was determined to learn how to play this song on the piano. I gave Caroline a heads up, and today she came with Christmas music books in tow. While Caroline was visiting, JP (our neighbor) came over to visit and brought us all pizza. Mattie took a piece of pizza with him as he sat down next to his keyboard to play. Thank you JP for the wonderful pizzas! While Caroline and Mattie were working together, I went upstairs to contend with Mattie's bedroom. Peter convinced Mattie today that the HUGE tent in his room had to come down. Thank GOD for miracles. The tent was so big, that I couldn't get in the room, and forget about opening up a closet door. So today, we reclaimed a room in our house. While Mattie was learning "Oh Christmas Tree," I was moving like the wind to reorganize his room and to put some of our Christmas things away. So it was a productive afternoon. Thanks Caroline for this time!


Mattie did indeed learn "Oh Christmas Tree" and he enjoyed playing it for Peter and myself. Peter snapped a picture of Mattie while playing. Mattie can play the song with his hand or his foot. That left foot, "George" is quite talented. Mattie had a good lesson with Caroline, and I was so happy that he listened and focused on what she was showing him. Thanks Caroline for sharing your saturday with us.


We want to thank the Putnam family for supplying us with lunch and dinner today. That was so generous of you. Mattie loved his Bear Rock lunch as well. So he had two lunches today, which is excellent. The brownies were truly a special treat. Nothing like caramel and chocolate! We enjoyed our chinese food dinner as well, and appreciate you thinking about our meals today.



Later this afternoon, we took Mattie for a walk at Huntley Meadows, which is in Alexandria. This preserve is lovely because it has a very special boardwalk that loops around a wetland area where you can always see some wonderful birds. We saw plenty of Canadian Geese today. Which are one of our favorites. I personally admire their team work, their ability to vocalize together, their commitment to each other in that no bird is ever left alone if hurt, and their beautiful V formations when they fly. Peter captured some of the sights we saw today.



When we got home we got to see JJ (our resident Jack Russell Terrier). Mattie is enjoying his time with JJ, and we are enjoying seeing what JJ is learning in school. JJ is learning the sit and lie down command very well. As we head into the night, Mattie is slowing down and watching a movie now. He had a productive day and Peter and I are talking with him about allowing others into his life. I know he is hearing me, and hopefully in time he will allow others to play and be with him without Peter and I having to be around.


I received three e-mails that I wanted to share with all of you. I was so happy to read that Bing Crosby's "Swinging on a Star" made an impression on you too. Thank you for writing me and letting me know that. Danelle (a friend and RCC mom) wrote, "I wanted to tell you that I clicked on the Youtube link with Bing Crosby tonight and Nicholas (who turned 2 last month) heard it, stopped playing and came over to the computer. He laid his head down on me and listened to the song. It was too cute. So…thanks! You provided me with an extra little cuddle from my very busy 2 year old. I might have to rent some Bing Crosby movies and see if it works again! ;-)"

The second e-mail comes from our family friend, Janie, who lives in California. Janie wrote, "Here I am once again on the first day of 2009 reading Mattie's Blog and wishing that I could walk into this wonderful world of electronics reach out and give you, Peter, and Mattie a BIG HUG. I want you to know that I try not to miss a night, because I know that like today you will soon be reporting more positive things happening in your lives. I wish this had never happened...I remember you as a little girl...and how much Grandma loved you all. I remember how unhappy you were coming to California. You were a vision of beauty on your wedding day and Sandy and I were so happy to hear that you had a little boy. Mattie's life has been blessed with a Mom and Dad who monitor his every breath and Grandparents who love all three of you. We, often do not understand why these things happen, especially to children, but I know in my heart that Mattie will one day stand above all of this. Your Blog is a tribute to you, Mattie, and Peter as well as those who surround you with their love and prayers, even though they are not nearby. Your every word catches the heart as well as the mind. We, your readers, feel....deeply.....keep putting your heart into your blog. One day Mattie will realize what a wonderful Mommy and Daddy he has, I would guess he already does."


The third e-mail comes from another family friend who wrote, "I wanted to say how powerful it was to read about what you were dealing with in the hospital when I visited early last week. I could tell that something was not right with Mattie’s medications but obviously did not know the extent of it. Watching you in action and then reading about it later confirmed what an extraordinary mom you are. Mattie is so fortunate to have you keeping a watchful eye on things and going to bat for him each and every day. On the blog you have mentioned several times your hope about what others may gain and learn from everything that your family is facing. I could go on and on about what I personally gain, but one thing is surely what true love and devotion looks like from a mother to her son. I feel so lucky to know such a wonderful family."

On the electronic front, we want to thank Karen, Grammie, and Brian Boru for their great e-cards. We also want to thank Rev. Beales at SSSAS for her wonderful snowman postcard. Thanks for praying for Mattie each week in chapel. That means a great deal to our family and we certainly know God works in mysterious ways.

Friday, January 2, 2009

Friday, January 2, 2009

Quote of the day: "During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous." ~ Melissa Bank

We are definitely perfecting our depth perception and I think this quote captures the essence of what I have been saying. Cancer has a way of changing how you look at things and prioritize things in your life in an instantaneous fashion. Mattie slept in this morning, but when he awoke, I helped him get changed up and then assisted him in eating oatmeal. Mattie is working on using his hands and arms, but he still is unable (or doesn't want to) to feed himself using a fork or spoon. Mattie has very little independence now, and I wonder why Peter and I are tired most days. Well as I have had the luxury of sitting back this week while trying to recuperate, I have observed what gets done for Mattie in a given day. Not only are Peter and I Mattie's constant play buddies (which sounds cute, but after so many hours of playing, most adults, even the best ones, get wiped out), but we have to clean, dress, feed, and medicate Mattie. It is like taking care of a newborn, however, it is more complicated. Because the newborn in this case is a six year old, with a mind of his own, a lot of pent up energy that isn't being used physically, and he is dealing with a bunch of emotional baggage from his illness. Now this describes a good day. On a bad day, also factor into the equation that we are living in a hospital and managing the staff around him who are providing medical care. When I look at it this way, I see why I am sick, and I see why Peter and I are so tired.

At 10:30am today, Mattie had a visit from Dan, his in home physical therapist. We prepared Mattie for Dan's visit last night and this morning. We told him it was going to be a short visit because he then had an appointment at the Lombardi Clinic. We tried to get Mattie excited to show Dan his physical accomplishments, and as always spoke to him about the importance of working with Dan and Anna (his PT in the hospital). When Dan arrived, I went upstairs to lie down, since I am going on day 6 of being ill. However, even with clogged ears, I could tell that the session wasn't going well. I could hear that Mattie was hiding on Dan and when Peter encouraged Mattie to come out from behind the couch or table, Mattie started to cry, and that basically was the end of the therapy session. Mattie shut down. I am concerned about how Mattie relates to Dan. I think Mattie is closed off to physical therapy and therefore is making it extra challenging for Dan. I remember when Mattie started occupational therapy years ago with Kathie. It wasn't pleasant then either and it took Kathie a while to break through, but it happened, and now they fortunately have a great rapport. But now the stakes are even higher. Mattie needs physical therapy in order to regain function and his life back. So on one hand I understand where Mattie is coming from and his need to ease into this, but on the other hand, I am impatient with this behavior because he has the control in the palm of his hands to make things better for himself. To say I am frustrated is an understatement today and Peter felt the same way.

After this session, Mattie then got his socks and shoes on and headed to the Lombardi clinic. At the clinic Mattie was greeted by Jenny. Mattie and Jenny had a good time together and they designed two wonderful items that came home with him. Mattie created his own version of a bicycle helmet, as you can see from the picture, the helmet is quite boxy,and has its own reflective tape! You won't miss Mattie coming with this on his head. The other item he created was a dog house for his Scooby Doo keychain. Amazing how Mattie can transform a box. Inside Scooby's house there is a couch, dog bowl, bath tub, and TV. Scooby also has a rooftop terrace, and flashlight skylight! Thank you Jenny, Mattie had a good time today! Mattie's absolute neutrophil count was 500 today, it was 2500 on monday. So technically Mattie is now neutropenic, but the question is will he get sick? So far it is hard to tell! So we wait and keep feeling his far head for a fever or observe him for anything out of the ordinary like a stomachache.

Mattie and Peter arrived home just after lunchtime. Marilyn (one of Mattie's former preschool teachers) provided us with lunch today. We loved the homemade tomato soup. Mattie actually ate it. This was amazing, he said it smelled good and drank a whole cup full. Wonderful. Thank you Marilyn for the bagels, clementines (my favorites!), and the brownies. But the big hit today was the massive Scooby Doo balloon. I am not sure who this balloon made happier... Mattie or Peter. Some of you may recollect that Marilyn gave Mattie a Scooby Doo balloon last week, but it flew away from Peter and Peter felt just horrible about this. Marilyn saved the day, and today Mattie was the proud recipient of a balloon that is half his size. Mattie was happy to pose for a picture with this great balloon. Thank you Marilyn for bringing a smile to our home today!

Later in the afternoon, we received a special care package from Bob Weiman (Mattie's Head of the Lower School at SSSAS). Bob made homemade Matzo ball soup that was delicious and medicinal! Bob calls Matzo ball soup, Jewish penicilin. I believe it! Bring it on, I could use as much as I can get. I enjoyed the soup today, and I appreciate the thoughtfulness behind it. Bob, we appreciate all your support from e-mails, visits, and magic tricks. Mattie received a dizzy dice magic trick today from Bob. I told Bob that I am now getting the hang of how to do some magic tricks, because I got the dice trick right away. I told him he is a good teacher because magic doesn't come easily to me! I love watching it, but performing it is a different story. Mattie will love to add this to his repertoire.

This afternoon, everything possible that could wrong with a computer happened to mine. Me without a computer, is like a bird without its wings. Thank goodness Peter understands computers, and after several hours of maintanence it is up and operational. This afternoon, I had the opportunity to play with Mattie. We played in the tent, which is taking up his entire room, and we went around the house playing with walkie talkies, we played hide and seek, played with his air craft carrier toy, and we even watched a movie together. It was a full day. This evening we had a visit from the Coker family. They hand delivered us a lovely dinner of homemade lasagna, salad, and these amazing chocolate dipped cookies. Of course Peter's favorite was the hoodsie cups, which any good Bostonian would know these are small cups filled with Hood ice cream. It was wonderful to see Ellie and Gavin too. Ellie went to preschool with Mattie and she created a lovely New Year's card for Mattie and also gave Mattie a "blue lobster" stuffed animal today. The blue lobster is a lot of fun because you can create a virtual world for him to play with at http://www.seapalsworld.com/. Peter and Mattie had fun exploring this world together with Blue Lobstery (Mattie's name for the lobster)!

On the electronic front we want to thank Brian Boru, Rosalinda, Jacky, and Karen for the wonderful e-cards and e-mails today! As many of you know from reading last night's blog, I have become friends with another mom who has a son dealing with osteosarcoma. Kristi lives in Nevada and she referred to a poem on her blog entitled "Cancer Shoes." I asked her to share it with me. Thanks Kristi! I hope you all enjoy it. It does capture the essence for how I feel some days, but one thing is true, once cancer has come into your life it is here to stay, it will always be a part of our world.

Cancer Shoes ~ author unknown
"I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a woman who has a child with cancer. I will forever walk in these shoes."

As we head into saturday, Mattie has swung back into not wanting to see anyone. He doesn't want anyone visiting him and I can assure you this is a very hard thing to listen to and deal with. In fact, when he saw Ellie and Gavin today, who he knows, he would not even acknowlege them. Should be a fun weekend. I end tonight with a YouTube clip of Bing Crosby's, "Swinging on star." I enjoyed hearing this song on New Year's eve in the movie, "Going my Way," and I hope you enjoy it too. To me it is priceless. The message is we can always work to be better than we are! I do think cancer has forced our family to do this each and every day.

http://www.youtube.com/watch?v=iTUKHMlbYGA

New Year's Day

Thursday, January 1, 2009

Quote of the day:

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~ Barbara Bloom

I found this quote today, and it just spoke to me. I helps me put Mattie's illness and scars into perspective, and it also gives me hope as a parent who has seen some of the worst things performed on my child. I guess one can only wish that these experiences deepen not our external beauty, but instead provide internal growth and introspection, which can bring about a sense of peace and acceptance about the injustices in our world. In a way, when and if one reaches this true understanding, then and only then can one really appreciate beauty within one's self and the world around us.

How did we spend New Year's eve? Well Mattie was so wiped out from his special playdate that he requested to go to bed at 8pm. Totally unheard of! So Mattie wasn't up at midnight. While Mattie was sleeping, Peter and I decided to watch a movie. Peter knows I am an old movie fan, so I got to choose a holiday movie I wanted to see. I chose "Going my way." I am a big Bing Crosby fan, and the movie has one of my favorite songs in it, "Would you like to swing on a star...." A song you RARELY ever hear now a days, but this song brings a chuckle to Peter and I, because Jerry and Nancy (one of our favorite musician volunteers at the hospital) did a name that tune game with us on the first week Mattie was hospitalized in August. They did not think we would be able to guess the song. Not only did I guess the title, but I knew a lot of the words to the song. We all became instantaneous buddies after that name that tune game.

Mattie went over to Zachary's house today for a playdate. Zachary is a good buddy of Mattie's from RCC, his preschool. It was very thoughtful of Katie to invite Mattie over, and despite the fact that Mattie is probably becoming neutropenic, I feel as if I can't isolate Mattie from these social experiences. Peter took Mattie over today, as I am still congested and not feeling 100%. With Peter going back to work next week, and then the following week we are taking Mattie to Sloan Kettering in NYC, I have to pull it together. I can't afford to be sick much longer. Mattie spent about two hours today with Zachary. Mattie woke up in a funk and was in a bad mood, so I am happy that he at least got a change of pace with Zachary. Thanks Katie for making lunch for Peter and Mattie too, and for the soup!

While Peter and Mattie were out today, I checked e-mails. There are several families from around the country who have a child with osteosarcoma who have found us through Mattie's blog. I try to communicate with them on a regular basis. One family lives in Pennsylvania and their daughter was diagnosed almost on the same date as Mattie and the other family is in Nevada. The family in Nevada has a caringbridge website, which is like our blog, but I get e-mail alerts when this family's blog has been updated. So this morning I checked David's blog. David is a teen and has osteosarcoma (he had a tumor in his leg, and had tumors in his lungs as well). David is about a year ahead of his treatment in comparison to Mattie. So he has had his surgeries and all this chemo, but continues to have other challenges, like limb lengthening surgeries, and of course periodic CT scans to rule out other tumors. At the moment, David is recovering from limb lengthening surgery, which is painful, and his scans have revealed a possible spot in his foot. So you can imagine how this family is feeling. Today's blog submission that I read insensed me. David's mom has been maintaining the blog for over a year, and yet reading between the lines it appears that people have written to her privately making negative comments to her about what she writes. In particular I surmise that others told her that the blog should be about David, not her, and why does she write about herself and her family? Well when I read that today, I was livid. So much so, that I wrote back to Kristi (David's mom) several times because here is a woman who is doing everything right for her son, and yet she is being critiqued. I just couldn't get over it. Cancer is a family disease, and if one person has cancer, guess what? The rest of the family might as well be diagnosed, because we are all experiencing this illness in some way. None of my readers have ever asked me this, because I sense on some level, you all get how important this blog is to us, but writing about how this disease impacts Mattie, Peter, and myself is a wonderful emotional release. We are a family unit, it would be impossible to write about one of us, since what happens to one directly affects what happens to the other two. I am priviledged to have electronically met Kristi in Nevada and Carey in Pennsylvania. Not that misery likes company, but on many occasions we live life in parallel, and it is nice to know you are not alone in how you are experiencing osteosarcoma.

Mattie and I this afternoon watched the movie, Lilo and Stitch. I had never seen it before, but he was excited to introduce it to me. It was lovely to be able to sit in one place for over an hour and watch this movie with Mattie. Mattie also had a hungry moment where he practically ate an entire box of macaroni and cheese. As we moved into the evening, Honey provided us with a major feast (all the way from Hawaii!). What a way to bring in the New Year. The pastas, salads, and pizza were fabulous. I look forward to eating the chocolate cake too. I hope this is an indication of other sweet surprises headed our way in 2009, and I don't mean dessert surprises, I am hoping for medical ones! Thank you Alison for helping Honey deliver us a wonderful dinner tonight!

Mattie also opened up several gifts today that he received in the mail. We want to thank my cousin Maria for the DVDs of Reading Rainbow. We look forward to watching them together. I want to thank my dear friend, Lorraine, for the soothing sounds CDs. Mattie and I actually listened to them today while we were playing on the floor. It did take us away for a little while! JP, our neighbor, gave Mattie a HUGE calculator, and Mattie just loves it. He likes stumping me with the long numbers he comes up with, as if I wouldn't be able to read them on the screen. He makes me laugh! We want to thank Grandma and Granddad for the homemade gingerbread cookies you sent to Mattie. Mattie already ate one, and gingerbread for some reason agrees with his tummy. Mattie also loved the interactive Eve toy you sent him from the movie Wall-E.

I have been remiss for a few weeks and haven't consistently checked Mattie's e-mail account. But today we had the chance to look at e-mails and e-cards. On the electronic front, we want to thank Jacky, Grammie, Laurie, JJ (our resident Jack Russell Terrier), Emily W., Allen, Brian Boru (our feline friend), and Karen for the wonderful cards and e-mails.

As we head into friday, Mattie has a physical therapy appointment with Dan in the morning and then goes back to the Lombardi Clinic for another blood draw to assess his counts. Is it possible Mattie won't become neutropenic? A mom has got to dream, no? We have had a week at home so far, and it is a great and yet unsettling feeling. Because you wait and wait, for the next shoe to drop. As I sign off for the night, I hope you all started the New Year on a positive note, and know how much we value your support and friendship.

New Year's Eve!

Wednesday, December 31, 2008

Message of the day: Happy NEW YEAR!!!! May 2009 be a better year for Mattie!

At midnight tonight, Peter, Mattie, and I will be up and saying a New Year's cheer and blessing for all of you in our lives. Robert Burns said it best....Auld Lang Syne or to the good old days (or the ways things used to be for us!).

Auld Lang Syne

Should auld acquaintance be forgot,

and never brought to mind?

Should auld acquaintance be forgot

and days of auld lang syne?

For auld lang syne, my dear,

For auld lang syne,

We'll take a cup o' kindness yet

For auld lang syne.

Mattie was looking forward to his playdate today! Ellen, Charlotte's mom, invited our family and the Cooper family to a luncheon to celebrate Charlotte's 7th birthday. Charlotte, Campbell, and Mattie were like the three amigos when they were in kindergarten together last year, and I think all three of them miss this camaraderie this year. Normally I would be concerned about Mattie meeting up with his friends, because lately he has been on the nasty and gloomy side when interacting with them. But something about his mood today, gave me the inkling that he was set to have a good time. I am still not feeling well, and since it is cold and blustery out, I stayed home. But Peter took Mattie to the celebration. I really wanted to be there today, to see Mattie with his friends, and having a good time. In fact, I practically took every over the counter cold remedy to try to feel better. I got Mattie ready for the party today, and he was very cooperative and practically jumped in his wheelchair and was waiting by the door for Peter to take him.

Charlotte's family celebration started at a Japanese restaurant in Alexandria. The kids sat in front of a hibachi table. This was very exciting for Mattie, since he never had experienced this before. He absolutely loved it. Peter caught some great pictures of the kids, watching in awe as the chef was cooking. In fact, when I asked what Mattie loved about the restaurant the best, he said he loved the volcano made out of an onion. In fact, you can see the flaming onion in the right side of the picture.

From left to right: Campbell, Charlotte, Mattie, and Livi (Campbell's sister)

I also love this picture of Charlotte blowing out the candles on her cake. Look who is also blowing out the candles (and I don't mean Charlotte's mom)!!

It meant a lot to us that Charlotte's family included us in their family birthday tradition. The family celebrates Charlotte's birthday each year by having lunch and then seeing a family movie together. Charlotte loves this because her siblings are usually home from school during the holidays, so this is a special reunion for her. I am just so honored and happy that Mattie was included in this wonderful tradition this year. After lunch, they all went to see the movie, "The Tale of Despereaux." Mattie enjoyed that too, but I think he simply loved the fact that he got out of the house and did something with his friends. For today Mattie was simply a kid. Though I wasn't there to see any of this, when Mattie got home, he was energized and talking. He had a good time and shared part of his afternoon with me! Today was a real gift, the gift was that we got a glimpse of the old Mattie. The Mattie who loves life, his friends, and having a good time. It was important to see this side of him, because it is a side Peter and I rarely see much of anymore.

We want to thank Margaret for a wonderful dinner tonight. Margaret was headed out of town today, but she made sure before she left that she brought us a lovely dinner. In addition, Margaret is a baker and holiday cookies are a tradition in her house. We thank Margaret for all the wonderful cookies, the gingerbread house kit, the mandala coloring book, and my "thinking of you" angel. You can never have enough angels around! Peter loves the eggnog, and that made his night! I appreciate you starting off 2009 on a good note for us.

I received a special gift in the mail today from my friend Catherine (a RCC mom). The book is entitled, "Heartsongs" and it was written by a young boy by the name of Mattie Stepanek. Mattie wrote these poems when he was just a child. In fact, he was a child who had a rare form of muscular dystrophy and he lost his three siblings to this disease as well. Mattie wrote this about himself:

"I am Mattie J.T. Stepanek.

My body has light skin.

Red blood, blue eyes, and blond hair.

Since I have mitochondrial myopathy.

I even had a trach, a ventilator, and oxygen.

Very poetic, I am, and very smart, too.

I am always brainstorming ideas and stories.

I am a survivor, but some day, I will see

My two brothers and one sister in Heaven.

When I grow up, I plan to become

a daddy, a writer, a public speaker,

And most of all, a peacemaker.

Whoever I am, and whatever happens,

I will always love my body and mind,

Even if it has different abilities

Than other peoples' bodies and minds.

I will always be happy, because

I will always be me."

As I was reading the book today, I was inspired by Mattie's writings. So I decided to google him. His website is maintained by his mom, since Mattie died before his 14th birthday. I was so saddened to read this, because this was a boy with a lot of potential, passion, spirit, and joy for living. I want to share two poems he wrote that caught my attention. To learn more about Mattie, you can go to his website: http://www.mattieonline.com/

"Circle of Happiness"

I am a little kid

For you to love.

I am a little kid

For you to hug and kiss.

I am a little kid

For you to say,

"You are so special,

Yes you are" too.

I am a little kid

For all of those things

And more.

And when you

Feel and say and do

All of those things,

I will be a little kid

Who will love you.

I will be a little kid

Who will hug and kiss you.

I will be a little kid

who will say to you,

"You are so special, too,

Yes you are."

I will be a little kid

Who will do all of those things

And more.

And that is what

Happiness

Is all about.

"Important Things"

When I grow up,

I think maybe

I will be a snowman,

Because when it

snows outside,

I'll already be cold

And like it.

And children will

Play with me,

And laugh

And sing

And dance

All around me.

And those are important

Things to have happen

When you grow up.

As I sign off for the last time in 2008, I want to wish you and your families a very happy, healthy, and meaningful 2009. We are honored that you read our blog, that you have the courage and strength to walk this journey with us, and that you are a part of our lives. Through Mattie's illness, Peter and I have come to understand, appreciate, and value the true power, love, and support of our caring community.

Tuesday, December 30, 2008

Tuesday, December 30, 2008

Quote of the day:

"When your child is sick, you have tunnel vision." ~ Nick Cassavetes

There is something SO true about this quote. Peter and I live with this tunnel vision every day. We do have other obligations to fulfull in our lives and we do it, but the weight of Mattie's illness falls heavily upon us. It is amazing that Peter and I haven't become very ill ourselves from this superhuman stress. The irony is prior to Mattie's illness my area of research interest was caregivers. Particularly people caring for sick older family members. Not only do I know the caregiver literature inside and outside (thanks to my dissertation chair!) but I learned about caregiving and how to be a caregiver from the best caregivers out there, my mom and dad. My mom selflessly cared for my grandmother who suffered from a stroke for three straight years. The stroke left my grandmother very impaired physically (paralyzed) and psychologically, but my mom did not want to place my grandmother into a nursing home, so instead our home was transformed into a hospital and my mom became her nurse/caregiver. A major undertaking since my grandmother was very heavy to lift and she became a profoundly different person than the woman we knew and loved prior to the stroke. Seeing my mom work so hard as a caregiver day in and day out inspired me while I was in college. So much so, that by the time I got to graduate school, I knew what I wanted to research. Caregivers, and the impact such stress places on their bodies and minds. The ironic part is I always thought this first hand knowledge was imperative to the work I do in the field, but I never in my right mind thought I was going to have my own caregiving experience this young in my lifetime. For my family, seeing my grandmother so altered day by day was heartbreaking enough. But I am learning, you can't control what life throws at you, only how you deal with it.

There is a lot of caregiving research that was done in the 1990's that clearly illustrated that the immunity and health defenses of caregivers can be severely impaired because of the work they do each and every day. I saw this finding come to life when my own mother became hospitalized and gravely ill from her caregiving role. I know this is something she is trying to prevent from happening to me. As I am sick now and going on day three of bedrest, I can see that a simple bug that would usually wipe me out for a day or so prior to Mattie's illness is taking much longer for me to deal with. I am not a wallow in pitty sort of person, in fact, if you bumped into many of my students, they would tell you I have taught many a night while coughing and even with fevers. You think you are invincible sometimes, or that other things are so much more important than your health. Well how absolutely ridiculous is that? But what a way to learn such a powerful lesson. None of us are invincible, none of us are that important that we can't take a sick day, and I could go on, but you get the picture.

With me being ill, Mattie and is also having a slower day, because Peter needs to be around to take care of both of us. This morning Kathie, Mattie's occupational therapist, and really a family friend now, came over and worked with Mattie for over an hour. Mattie took to Kathie like a duck to water, there was no attitude, and he did not give her a hard time. Kathie came over with some therapeutic presents for Mattie. He continues to use his hands today to stack the jenga wooden blocks, and I can't wait to see what he does with the rubber pig! Thanks Kathie for the work you are doing with Mattie, and thank you for giving Peter the time to go out to the pharmacy for medications for me.

We want to thank Liza today from bringing over homemade chicken soup, homemade pumpkin bread, and pineapple for us today. The chicken soup was a real treat. Liza was our point person this afternoon, and despite having other obligations in the afternoon, she found the time to come and help us. It was greatly appreciated! Liza also dropped off a huge surprise to us. A framed photo of Mattie with the SSSAS football team. I took this photo back in the fall, but I have never seen it enlarged or signed by every player. We took a photo of this impressive poster sized photo, front and back. Thank you for this special treat. As all our readers know by now, I am extremely fond of the coaches of the team, and I can't thank Coach Dave enough for all his love and support for our family. Though I do not know the players themselves, I will always be impressed with how kind and gentle they were with Mattie when they met him several months back. This photo will be finding a special place in Mattie's room.

We want to thank the Giammittorio Family for a wonderful dinner. Dawnee you out did yourself. Mattie even ate carrots, mushrooms, and potatoes tonight. It was amazing. Everything was delicious, and I forgot how much we love baked potatoes. Thank you for that tonight, not to mention the cheesecake. Mattie hasn't opened up his gift yet, but I peeked in and I know the helicopter will be a hit with him. Your dinner motivated me to get out of bed, and I joined the boys downstairs and we all ate together. Then Mattie introduced me to a discovery channel show where you track tornadoes, which he finds fascinating! So we all watched it together.

The excitement for the evening was Mattie finally agreed to take a bath. Now that may not sound like such a big deal, but it truly is! Mattie has refused to go into the bathtub since his first surgery back on October 20. I was so thrilled that Peter convinced him it was safe to take a bath. Mattie was a mess, and there is so much a sponge bath can remove, especially after surgery when your body is covered in an iodine colored solution. The bath went fairly well tonight and after which Mattie sat still for a dressing change. So it was a full night for all of us. Though I am getting used to it, it is still somewhat disconcerting to see these HUGE scars on Mattie's arms and leg. I know they will get lighter in time, and I know in the grand scheme of things I shouldn't even be concerned by them, but we live in a world where we are first judged by what we look like physically. As a parent with such a sick child, you wonder how will the world receive and treat Mattie. Yes I realize I am putting the cart before the horse, but as a parent your mind can't help but go there at times. I also see Mattie struggling to walk, with his knee turned in and his foot seeming to go in the opposite direction of the knee. It is an awkward position and I try to correct it when I see it.

Mattie has a special playdate that he is headed to tomorrow (wednesday). Stay tuned for the update tomorrow, but I know he is motivated to go, and I am trying to get myself well enough to attend with him. If I can't Peter will definitely go with Mattie. But at the moment, Mattie is holding his own. He looks good, is now clean, and is ready for a change of pace tomorrow.

Monday, December 29, 2008

Monday, December 29, 2008

Quote of the day:
"While we try to teach our children all about life, our children teach us what life is all about." ~ Anonymous

This quote captures how I feel about Mattie. In the past five months he has taught me so much, and he continues to teach me things about life, hope, people, and courage. Today Mattie said good-bye to his aunt, uncle, and cousins. They headed back to Boston. Peter told me that Mattie was upset that they left, and as Peter and Mattie were headed to the Lombardi Clinic for a blood draw, to see how his counts were, Mattie asked Peter why bad things happen to him. Great question, if we only had the answer to such a profound question. Peter handled Mattie's question very well, and Peter always reminds Mattie that nothing about this disease is Mattie's fault. That he did nothing wrong. But it is hard to see a six year old having to spend his life confined, in pain both physically and psychologically, and basically not being able to be a child. It is a nightmare of grand proportion, but unfortunately this is a dream I never wake up from, this is our reality. Seeing other happy and healthy children in our lives further illustrates to us how profoundly different our world is. We as adults have trouble processing all of this, so I am not surprised Mattie has a lot of questions about his condition. As an adult, we can try to see the bigger picture. We can understand that we are growing and learning and that others are gaining insights from this traumatic experience too, but to a child, this big picture does not matter. What matters is the here and now, and the here and now is a picture of confinement, isolation, pain, and a lack of control over one's life and body.

After Mattie's clinic appointment, Peter took Mattie for a wheelchair ride on Roosevelt Island. Roosevelt Island is a wonderful nature preserve that we always enjoyed going to as a family. I think Mattie enjoyed this time with Peter and also the fresh air. Mattie even ate half of a hamburger today, which was a wonderful accomplishment on his part. When they got back home after their adventure, Peter carried Mattie upstairs, because Mattie wanted to see me. I have been pretty much lying low for the past two days because I don't want Mattie to get sick with what I have. However, Mattie said he missed me, so Peter carried him into our bedroom, and Mattie sat with me on my bed. He came over to cuddle with me, rubbed my head, and said that he loved me. He spent at least two hours with me, and he told me about all the birds he saw on Roosevelt Island such as cardinals, blue jays, and even an eagle. I told Mattie that he was the best medicine I received in two days. There is nothing like a Mattie hug!

I want to thank JP (JJ's owner and our neighbor) for a wonderful lunch today. We all enjoyed the pasta and pizza, and I LOVE the teas. They are delicious and are helping my throat. Thank you for thinking of us always. We also want to thank the Chiaramonte family for the wonderful homemade soup tonight. It reminded me of Italian wedding soup. Soup is a great medicine! We look forward to tasting the incredible caramel brownies too and I appreciate the "create a book" set you gave Mattie. I hope this will inspire him to create a story!

As we head into tuesday, I am still sick. I am running a fever and I have a sore throat like none other I have ever experienced. Peter is taking another day off of work, because I just don't have the energy to do much. I think Peter is coming down with something too. The irony is Mattie is doing fine. Thankfully! His white blood cell count is high and the thought is he hasn't reached his nadir yet (the point where his white blood cell count zeros out). Mattie will be meeting with Kathie tomorrow for his occupational therapy appointment, and will most likely meet up with Dan, his in home physical therapist this week as well.

Sunday, December 28, 2008

Sunday, December 28, 2008

Quote of the day (Thanks Charlie!):
"A champion is someone who gets up, even when he can't." ~Jack Dempsey

Well today, I don't feel like much of a champion. Yesterday I started to feel ill, but I thought I could work through it. Bad idea! This morning I woke up with a fever, my ears are stuffed up, so much so I can't hear well, and my throat feels like sand paper. My body feels like it is falling apart, and I have no energy to even move. Peter took one look at me today and marched me right back to bed. Despite being tired and fatigued himself, he is taking on Mattie today. It is kind and loving gestures like this just illustrate what a wonderful person and father Peter is.

I was so concerned about feeling ill that I called in a prescription renewal for antibiotics. I know that Peter has to go back to work this week, and Mattie is probably going to become neutropenic, so this isn't a good time to get sick. Mattie can't be around me if I am this sick. So fortunately Dr. Bob, when he prescribed me antibiotics in October, allowed me to renew them three more times. My kind of doctor. At this point in my physical history, I can really tell when and if I need antibiotics, and on a sunday I don't have the energy to play around with an emergency room. So we called in the prescription, but we needed someone to pick it up since I really couldn't have Peter leave our home because I wasn't up to watching Mattie alone. So I called our Team Mattie point person for the day, Tanja. Tanja was my hero today. She gladly picked up my prescription and also brought Peter and I a lovely lunch. Chicken soup is one of the best medicines, don't you think? Thank you! Mattie also loves the pumpkin bread, so that was a hit too. Thank you Tanja for helping us so much today.

At around 2pm or so, Mattie's aunt, uncle, and cousins arrived and they have been with him ever since. They are playing, building, and having a good time together. This "kid" time is very good for Mattie, and from what little I can physically hear, it sounds like everyone is having a good time. Mattie needed a weekend like this, and I am all for him seeking joy and entertainment from others, other than Peter and myself. There are times Mattie is very capable and accepting of others, and then there are times he is closed off. I am just happy he is open to connecting with his cousins this weekend.

We want to thank the Knox family for making us a wonderful dinner. Everyone enjoyed your homemade enchiladas. We appreciate your support and for making plenty for our whole family.

Peter just let me know he is taking tomorrow off from work because he doesn't like the way I look. Peter will take Mattie to the clinic tomorrow for his blood work and appointment. That is a huge relief to me. Before I head back and rest, I wanted to share three e-mails I received today.

The first e-mail is from Maria. Maria's daughter, Teresa was a patient at Georgetown and she is an osteosarcoma survivor. Maria e-mailed me today a timeline of pictures of Teresa. So I got to see what Teresa looked like before she was diagnosed, what she looked like through treatment and surgery, and what she looks like today. Wow is all I can say. Teresa's pictures are amazing and it is hard to believe how someone so fragile and crushed through chemo could look as healthy and happy as she does today. The pictures were humbling and told a remarkable and uplifting story without words. Maria wrote the following to me, "So many good people are looking after you and following your story, there is so much compassion and good vibes around you, that I can't imagine any other outcome than a positive one. So very many people pulling in the same direction can't fail from helping Mattie get rid of his illness. I am not just talking, I really have a very positive feeling about Mattie's recovery.

I just finished reading yesterday's blog, and I read the story about the egg. Very true, indeed. I felt like that myself once. But there is one thing the woman failed to mention; just like a broken egg, put back together, never recovers its smoothness and perfect curvature it had before it broke, the parents and the child are never the same afterwards either. You always end up walking around thinking what would life would have been like if this had never happened. Then again, like you said, you'd probably had never appreciated the greatness of humakind as you have known it after you've experienced this. So yes, even when the egg will never be the same, those "cracks" are the proud display of the courage the family endured while fighting for a child's life.

Nearly 2 years since Teresa finished chemo, I can tell you that the more time passes by, the more we forget about all of this. Only the good memories remain, and that is why whenever you write about the wonderful Onc/Hem nurses, I feel joy in my heart thinking of them. The best part is, while many of your bloggers can only imagine what you are describing, I can see it in detail, even put faces to the names. What about the nice volunteers, like Jerry and Nancy, and so many others, who made a huge difference in our lives and are right now making a difference in yours? You asked yourself in your blog why so many of us keep faithfully reading it, well, there you have it, we not only want to support you, we love to hear about the heroes behind Mattie's brave fight, the ones that support him, the ones that help you endure all this. Without them, it would be a pretty hard and lonely battle, don't you think?

I personally like to read everything you write because I can mirror myself in you and I can relive all that you describe and that it is just a memory now for us. It was so important, such an "eye opener" to me, to all of us, that I don't ever want to forget it. It is now a part of who I am and one that I am very proud of. And, while I am not happy that it happened, and God only knows what I'd give to have spared Teresa of it (my life, for one) I think it made me a much better person and it strengthtened the links between our family, even the way I perceive the world and my relationships with others, were greatly improved because of that experience. I know it is hard to see it that way now, but with time, believe me, one day you'll realize that there was some good in all of this. And you'll want to "coach" the next unfortunate mom who happens to inherit your position, and this will make your life much more meaningful, you will derive tremendous satisfaction from helping ease the pains and worries of someone who is now where you used to be.

I'd like to share a story that may ilustrate how I can so much relate to most of the stories you write about in your blog. Remember that episode when you related how after crying over the telephone, someone handed you a $20.00 bill? and you weren't even aware that someone was listening? I thought of the day when I was waiting in line at the Gift Shop at GUH, with Teresa in tow. We must have been quite a spectacle, altough then I didn't realize it. You should know that one of our few sources of contentment, during our stay at GUH, were those frequent trips to the Gift Shop. Tiny as it is, it held treasures Teresa and I loved. Candy, trinkets, beautiful souvenirs. So whenever Teresa and I felt down, we both tripped down to pick up something, even if it was just a chocolate bar or a bag of cheetos. I laugh to think about it now (poor us!). That particular day, Teresa saw a decorative figure, a little angel, 3 inches tall and made out of something like dough. She wanted it. Her heart just set on it, and started to ask impatiently that I buy it. I looked at the price, $25.00! for something that Wal-Mart probably sold at 3 or 4. I said no. Definitively. I was always very nice to Teresa considering her state, but positive as I always am, I was SURE that she would defeat this horrible thing, and I reassured myself that I did not want to spoil her by buying her everything that she wanted, simply because she was sick. No way. Least of all, something that was clearly not worth $25.00. Well, Teresa did not relent. She kept asking and begging, making a scene out of it. Picture this: she is 5 years old, bald, wheelchair bound, on casts, her wheelchair carrying a number of bottles that drain liquids into tubes, and these connect to her body. I probably looked like hell myself, dressed in rags after a rough night at the hospital. Then it's almost our turn ot pay, and the woman in front of us, in a white coat, obviously a doctor or a doctor's assistant, herself paying for her stuff, says: "oh, and I also would like to pay for that" and she points to Teresa's angel, back in the showcase. I felt terrible. Like a cheap, bad mom. I uttered some words to the woman, something like "it's OK, she really does not need that," but she was adamant, she quickly paid and left. She was courteous, nice, but at the same time did not want to make a big deal out of it. In my amazement, I could not even ask for her name. I always wondered who she was. I wished I could have known, to send her a note, to tell her how happy she made Teresa that day. To this day, the angel sits on a display shelf in Teresa's room, and whenever I see it, I have this very nice reminder of the many people who cared for us in so many ways and made a difference in our lives. Some of them were just helpful, nice in the way they treated us, others gave us presents, some others offered a word of consolation, a card, advice, a dinner, but the angel symbolizes all of them. I never want to put it away, because it reminds me of all the good that there is in this world, despite the bad I hear in the news everyday. To this day, I am convinced that Teresa got well thanks to the combined efforts of all those kind people, some of whom were even unknown to me (as I am sure happens to you with many of Mattie's benefactors). And that is why, deep in my heart, something tells me that Mattie will live to be a living testimony of all the goodness that sprung after his tragedy.

Even though I am not quite sure why this terrible thing happened to Teresa (to all of us, in our family) and why it is happening to you and you family now, I'd like to think that it is for some very noble cause, for some greater good, like the way Mattie's case has touched so many lives to this day. Maybe, just so that his recovery sets the record as one more big miracle in these terrible times we are living in right now, times of war, hunger, disease, pandemics, natural disasters, etc.."

The second e-mail is from Liza (a SSSAS upper school mom). Liza wrote, "When reading your entry this morning, I guess that I've always believed that your writing is a release for you too. You share information with each and every one of us and we're all so grateful for your candidness, wealth of information and heartfelt thoughts. I was assuming that since this is second nature for you that it just made sense for you to write and it also must be cathartic for you to share. I'm all about sharing so I get it - actually, we all get it. You have made a connection for so many of us and our hearts are following you. Some of us never would have really gotten to know each other so you are giving us a gift too - a gift of friendship."

The last e-mail comes from my dear friend, Lorraine. Lorraine and I went to graduate school together in DC. Lorraine wrote, "The beauty of being a human being is how resilient some of us are. Funny how much is written about RESILIENCE yet remember our textbook showed us that there is no way to know who is going to be more resilient than someone else. You clearly have mastered that ability." Thank you Lorraine for such a huge compliment. I think my resilience is out of desperation, because I can't give up or give in, because where would that leave Mattie? But I do think I am learning a lot about the principle of resilience first hand, and the factors that can enhance and feed it!