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!

Saturday, December 27, 2008

Saturday, December 27, 2008

Quote of the day (thanks Charlie!):

"We're so busy watching out for what's just ahead of us that we don't take
time to enjoy where we are." ~ From Calvin & Hobbes

Mattie had a late start to the day today. Because Mattie is on IV hydation at night (his choice, since he refuses to take oral medications to balance his electrolytes), he gets up many times during the night. This doesn't seem to bother Mattie per se, but I can assure you, it wipes out Peter and I. Peter has been taking on the nights since we got home from the hospital on wednesday. But I know the night routine is grueling. Getting up three times a night doesn't sound bad in theory, but it is the cumulative effect that is wearing Peter and I down. Mattie continues to sleep upstairs in his room, inside a three person tent. The tent is so large, that it takes up his entire room. The cords to the tent are connected to all my closet doors, so at the moment, it is almost impossible to get into the closets without collapsing the tent! Makes for an interesting arrangement.

Mattie had a visit today from his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie enjoyed his time today with them, opening up their Christmas gifts, playing with knex, legos, puzzles, and cars. At around lunch time, Alison, Ellen, and Tyler (Ellen's son, and many of you will recall the young man who raised a tremendous amount of money for the Mattie fund hosting a bingo night at his school) came over to pick up bags of Mattie items that I wanted donated. I can't thank this wonderful team for their help on a saturday! Thanks Alison for taking all these items off my hands today and taking on the responsibility of making the donation. In fact, Mattie was interested in the whole donation process today, that he insisted on going upstairs to my parent's apartment to check out what was being moved. Fortunately Lisa, my sister-in-law, and I went to my parent's apartment earlier in the day and took Mattie's things that were in clear plastic bins and moved them into dark garbage bags. So the contents inside the bags were not revealed. I think if Mattie saw his things being donated, things he no longer plays with or are suitable for him, he would have been very upset. Later in the afternoon, Mattie even took a long wheelchair walk with his family around the Washington Mall. We captured a couple of pictures of the kids today horsing around on the floor.

Left: Mattie, Will, and Sydney

Right: Nat, Mattie, and Will

We had lunch together today as a family and thanks to the Dowling family, we had an outstanding homecooked dinner. Mark and his son, Sean, came over today and delivered us a spectacular dinner, and Mark explained to me that he was born in Iraq and made us an Iraqi style chicken dish. It was wonderful, along with a lovely pasta dish and salad. Mark even brought Mattie a vanilla shake and wonderful ice creams. Thank you for working so hard and for bringing dinner for our whole family. That was very generous. You both are good cooks. It is wonderful to see a dad teaching his son how to cook! Mattie loves the airplane as well. It is a fascinating plane, you literally throw it backwards and it comes back to you like a boomerang. We also love the electric toothbrush, a great gift for Mattie since he is having trouble brushing his teeth now.

Earlier in the day I received a phone call from Grace (a friend and RCC mom). She invited all of us to go to Zoolights tonight at the National Zoo. Basically for those not familiar with this event, the zoo creates all sorts of light displays throughout the property and it is a fun and family oriented way to stroll and enjoy the season. Mattie did this last year with his buddy Alex, so I was familiar with the set up. This event did not even register with me this year, and I am so happy that Grace suggested it. It was a wonderful way to get outside, see lights, and thankfully it was a warm night. So everything was in our favor. It was nice to see our RCC buddies again, since the whole Putnam and Lee families joined us. They got to meet Mattie's aunt, uncle, and cousins as well. The light displays were very nice this year, and there is just enough not to overwhelm anyone, and yet enough to capture your attention. I took a picture of all the kids in front of the zoolights sign!

Kate, Nat, Sydney, Will, John, Mattie, Eric, and Christopher!

Toward the end of the evening, Mattie was getting upset and basically wasn't happy. By the time we got him to the car he was crying. We asked him why, but I really knew the answer. Mattie gets very upset these days when I talk to other people and do not focus my attention solely on him. Naturally it is impossible to spent 100% of my time focused on Mattie, but he gets easily slighted, and tells me that when I talk to other people it means that I don't love him or think he is special. This is not the first time I have heard this from Mattie while he has been sick, and each time, I try to help him work through this and understand how unrealistic and irrational his statements are. But there are times I am only human, and it is hard not to want to blow up, because in his mind I am not entitled to any free time. Part of if is a six year old manipulating the situation, and the other part is just his illness and insecurities. It is a fine line to walk when raising a child who is so sick. You have an obligation to be a parent, but I tell you it is very hard to parent effectively sometimes.

When we got home tonight, I could tell Mattie had something in mind to do. For the past couple of days Mattie has wanted to surprise me with something. So Peter sent me upstairs. About 20 minutes later, in walked Mattie as Rudolf the Red Nosed Reindeer and Peter as Santa. Mattie wanted to create something for me and give me a gift for Christmas. I think Mattie has been feeling that I needed to get something from him, and Peter helped him meet his goal. I took a picture of the delivery process and then the final product, which was a castle. It was a lovely surprise. I think Mattie also loves playing Rudolf and wearing the antlers.

As I write this blog we are watching "Charlie Brown's Christmas movie." A Christmas movie that transcends the generations, doesn't it?! I am reflecting on our day. I always wonder how children who spend time with Mattie process what is going on with him. Lisa was telling me today that she had an interesting conversation in the car with Will a week ago. Will is about 18 months older than Mattie. Will told Lisa that while he is at school, and in between the times he is learning, he spends time thinking of Mattie. I found that comment very interesting, because clearly children have their own way of processing what is happening to Mattie. I guess a part of me feels as if others are leading their normal lives, and perhaps occasionally think of Mattie, but I am learning that isn't always the case. Will is an example of how he is internalizing what is going on with Mattie. I also spoke with my mom on friday, and she was telling me that she may be in Los Angeles, but not a minute goes by when she doesn't think about Mattie and our situation. I think it hard to leave us after spending several months with us and realizing just how much help we need. I began to see that she is as deeply hurt by Mattie, almost as much as I am. I don't know, that probably makes sense to all of you reading this, but that was a revelation to me. Somehow I think that the magic of physical separation from us makes things better for others or makes the situation go away, but I think Mattie's situation is so profound that it does impact you no matter the age, circumstance, or your geographical location.

Tonight I was talking to Mark Putnam. Mark told me how much he enjoys reading the blog, but wonders where I get the strength each day to write it. Good question. I think the blog serves multiple purposes. It is a way of self expression, a way to document that is happening in Mattie's life (which I like to have for historical and record keeping purposes), and most certainly a fantastic way to keep connected with all of you and build our community. Sure there are some nights I may not feel like writing, but once I sit down, things usually just flow out. I chalk that up to my days as a graduate student at the George Washington University. There is a certain level of discipline required to get a doctorate in counseling, because you have to write process and progress notes on each client you counsel. Basically there is A LOT of writing involved in the degree. Writing becomes just a part of you after a while. I learned to really perfect my writing at GW, and thankfully so because this a great coping mechanism that I turn to now in this time of great stress and heartache.

As I sign off for the day, I am happy Mattie is having a good time with his cousins! It is wonderful to see, and I feel very fortunate to be surrounded by so many people who are eager to help us in a moment's notice. We are seeing the true meaning of the holiday season through each and every one of you. Thank you!

Friday, December 26, 2008

Friday, December 26, 2008




Quote of the day (Thank you Virginia B.):


"Whoever said winning isn't everything never had a child with cancer." ~ Anonymous



I was the first one in our house to wake up today, and that is only because I set an alarm clock. We had a deadline to meet, we had an appointment in the Lombardi Cancer clinic at 10:30am. The clinic staff are probably so used to me by now, because I am always an hour late to every appointment. Before Mattie's illness, if I made an appointment, I was there right on the dot. But now, my philosophy is we are doing the best we can, and we get there when we get there!



Mattie had a good morning, and ate oatmeal and pancakes. It was an eating morning. Mattie has lost some weight, and is a solid 42 pounds at the moment. My goal is to continue to get him to eat anything prior to his next chemo treatment. Mattie was compliant to go to the clinic, because we promised him a trip to Walmart and Target afterwards. Basically my least two favorite places to go to the day after Christmas. But he was so disappointed yesterday with his gifts, we told him he could pick something out at each store. He was all business during his clinic appointment, because was motivated to get out of there and achieve his goal... picking out a toy!



Moving Mattie in and out of the car isn't a simple process. The wheelchair alone feels like it weighs more than I do. So each time I want to get Mattie from the car to the wheelchair, I have to first lug the chair out of the trunk, then I have to assemble the chair, help transfer Mattie from the car to the chair, and then reverse the process when you are done. I think Mattie was getting tired after several attempts in and out of the chair today! We first stopped at Walmart, which if you haven't been in a Walmart the day after Christmas, then let me paint a picture for you. It is wall to wall people, and frankly a zoo. You think the store was giving away merchandise with the crowds it pulled in. Any case, Mattie found a wonderful Knex set at Walmart, called a Doubledare Dueling Coaster. It reminds me of a rollercoaster, but for two racing cars! At Target, he found a remote control car carrier, which also had a remote control car inside. These two items made him so happy today, and he played with them all day. In fact, Peter and Mattie spent about three hours building the Knex structure. Take at look at the masterpiece!


While they were busy building, I was doing some other chores. I decided to do laundry, because you never know when you will get called back to the hospital. I want to be prepared in case Mattie does become neutropenic. It is like living from moment to moment, from fever to fever, and chemo cycle to chemo cycle. Basically you are always walking a tightrope. I have my hospital clothes or uniforms as I call them. I only wear certain clothes at the hospital, and if I should ever be able to put this time behind me, I plan on literally burning the clothes. In fact, I may never be able to wear sweat materials again in my life.

In addition to doing laundry, I also decided to move supplies from my parent's apartment to our home. My parent's lease is up on December 31, and I figured since I had the time to devote to this project today, I might as well do it. I knew I shouldn't put this project off to next week, because I don't know what condition Mattie will be in then. I took cart loads of canned foods and paper products from one place to another today, but what I quickly realized was where in our home was I going to put all this stuff? We are packed to the gill at the moment, because now I don't have the time, patience, or effort to devote to combing through things on a regular basis. So what started as a simple project of relocating items, took on a life of its own. I had to rearrange all my kitchen cabinets and pantry closet to get things to fit. It actually was an important exercise to do, but it only further showed me how things are piling up around me, and I can't seem to keep up. Tomorrow, Alison and Ellen will be helping me move all the boxes of things I plan on donating of Mattie's, which are currently sitting in my parent's apartment, into Alison's car. December 31st is my time frame to complete everything in my parent's apartment, and I want to do it sooner rather than later. I was contemplating schlepping the things myself on saturday to Goodwill, but then I thought about it twice, and e-mailed Alison, Ellen, and Christine.

I am very fortunate, Ann has found someone to help me everyday of the week during the day time hours. So each day I have a point of contact, who I can call or e-mail on a moment's notice for help. I do not like to take advantage of people, but there are times, I know I have to send the flag up, and need to step back and get help. Moving boxes is one of those times. Thank you Ashley for checking in with me today, and offering to help me!

I want to thank the Cooper family for a lovely chinese dinner. We actually all watched a Scooby Doo movie tonight with Mattie, while we were eating. This was a major accomplishment, because for the past two days, Mattie did not even want to be in the same room as food, or smell food. We also want to thank the Cooper's for the gift they gave Mattie, we haven't opened it yet, but I think Mattie will like it, since it sounds like a lego from shaking the box. Great dinner and thank you also for the beautiful holiday cookies!

This weekend, Peter's brother, sister-in-law, and their three children are in town. So I will be curious to see how Mattie relates to his cousins and what he decides to play or do with them. This could either be a great weekend, or a very difficult and moody weekend for Mattie. The verdict is out.

Today in the mail, Mattie received several handmade Santa cards from Ms. Pessaud's second grade class at SSSAS. Thank you for these lovely cards and for thinking of Mattie! The santas are so colorful and the sentiments inside the cards are lovely. I also received two lovely e-mails today that I would like to share with you. The first one is from Mark (a friend and RCC parent). Mark wrote, "I wanted to let you know how happy we were to see that the presents were a hit and to see the photographs of Peter and Mattie in the noses, hats, and antlers. Grace had a feeling they would bring a smile and I'm so happy to see that she was right.

I actually first stopped by the hospital (we hadn't been able to check the blog since my computer has been giving us problems, so we didn't know you'd gone home) and a nurse told me with a gentle smile "Oh, Mattie was able to go home yesterday." So I dropped them the gifts by your front desk -- I'm not sure if it was Mazie or Jessica, but she was very nice.

I'm mainly writing because I wanted you to know that Christopher picked out that blue winter hat specially for Mattie. John had wanted to give Grace a winter hat for Christmas and when we were in L.L. Bean looking at hats, Christopher just said out of the blue "I want to give Mattie a hat." He picked it out and picked out the card, too (the popup card with Santa in his sleigh). Both were totally unprompted. Christopher talks about Mattie often and while I don't think he understands everything that's happening, he clearly understands that Mattie isn't well and wants to do anything he can to help. I am thinking that Christopher must have thought that Mattie's head is probably cold. He will occasionally see us reading the blog and probably sees a photo of Mattie every now and then over our shoulder. We haven't talked about Mattie's loss of hair, but he was very determined to give Mattie a hat and this hat in particular ...

We are always thinking of you and are aching with you, too. You and Peter are truly Mattie's angels on earth. No matter what the future might hold, you are making the most of every moment with Mattie and his life is so much the richer for it. John, Christopher, and I have a favorite saying -- "I love you every minute of every day and every moment." In those darkest times when Mattie is unhappy and difficult and, most likely, scared beyond all imagining, I hope it is of comfort to know that at some level, he knows that you love him every minute of every day and every moment. And all of us are with you every moment, too." I think an unsolicited gift from a child to another child is so meaningful and special. Which is why I felt the need to capture that sentiment here. In addition, I just love Mark's saying, I love you every minute of every day and every moment. That is indeed how we feel about Mattie, it is just unfortunate when fighting cancer, you need to spend so many minutes of every day fighting such nonsense as health care systems and a host of other things.



The second e-mail I received from a woman I do not even know. Virginia B. found our blog through her community's listserv. She shared with me the following, "I am a mom of an only child as well. I can only imagine the horror you must be living. I recently discovered this blog through the Beverely Hills list serve and live in Alexandria. My son and I pray for you all each night. I wanted to share something with you all in hopes of giving a further voice to your terrible nightmare. A college friend, too has a child suffering from cancer and she shared this with me..."

Thank you Virginia! This is a great story and analogy! I end tonight with the story of The Strength of an Egg!

The Strength of an Egg



Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength. That is why parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~ Juliet Freita

Merry Christmas!

Thursday, December 25, 2008

Quote of the day: "Christmas is the keeping-place for memories of our innocence." ~ Joan Mills

I had the time today to search for a quote that captured the mood in our household today. To me this quote hits the sentiment I am feeling right on the head. Somehow all three of us (Mattie, Peter, and I) realize on some level that it is the end of our innocence. I think what can make Christmas a particularly depressing time in general (even if I factored out living with a son with a life threatening illness) is we have memories and expectations of what Christmas is supposed to be like. I remember Christmas very fondly as a child. I was fortunate to live in a town that was close in proximity to my mother and father's family. Things just seemed simplier then, it could be my naiveté of being a child who seemed to not have a care in the world, but I remember being surrounded by family, fun, and lightness. So far removed from my reality today. Though I also feel that the mood in our home today is so difficult that we could be surrounded by a football field of happy people and we would still feel pretty much the same.

Mattie spent wednesday night upstairs in his bedroom. He refused to sleep in our living room and in his hospital bed. Good in theory, but he still has trouble moving around. Now to top it off, he not only wanted to sleep in his room, but he wanted Peter to set up his huge tent in Mattie's room, and he wanted to sleep in the tent with Peter. Peter was a good soul and accomodated this request. Peter is better than I am, because after a long day, setting up a tent that is meant to be set up outside with stakes/poles, would be so low on my 'to do' list. Mattie waited patiently while Peter figured this out, and once the tent was set up, I set up Mattie's hospital mattress inside the tent, helped him in the tent, and then hooked him up to his IV fluids. While Peter was locating the movie Wall-E for Mattie to watch, I was rubbing Mattie's head, and he actually fell asleep and never saw the movie. Mattie was out by 9pm.

At 6am, Mattie was up and wanted to know if Santa came and delivered him presents. So he headed downstairs and Santa did not disappoint. I took a couple of pictures of Mattie opening presents, but I could quickly see that Mattie was moody and not happy.

He shut down from talking for many parts of today. In fact, Mattie was going to have two visitors today, Marilyn (one of his preschool teachers from RCC) and Kathie (his occupational therapist), but he refused all company. This is certainly understandable considering all the people that freely come and go in his hospital room 24/7, but I can tell you as a parent, this is very isolating and makes you feel helpless and at times hopeless. In between his moodiness, Mattie reported to Peter and I that he sees things, frightening things while he is awake. It can come on all of a sudden, and he doesn't know how to describe it, but to me, who is more familiar with working with adults rather than children, I would call it a child version of a flashback. Mattie is reliving the trauma he is experiencing in the hospital. It is very upsetting to hear this coming out of the mouth of your child, regardless of how understandable it is. Fortunately I feel like we are addressing this medical trauma with medication and therapy and in time I hope this too gets better. I believe that Mattie's emotional state is greatly impacting his physical status and his unwillingness to reclaim his body.

As we started unpacking what caused Mattie's funk today, I began to realize he was disappointed with his gifts. Mind you he had plenty of gifts to open, most of which he requested, but these things did not make him happy. I am the first one to agree that things can't make you happy, but the whole Christmas gift experience was seemingly blah for Mattie. I think Mattie has gotten so used to receiving gifts on a weekly basis since August, that Christmas wasn't special or anything different from every other day since he has been sick. In addition, Mattie had his mind set on a huge toy car, the kind that you get into and drive. Usually I would say no way to such a request, but when Mattie was wrapped up like a mummy in the hospital and I wanted him to start doing physical therapy, I promised him if he worked with Anna and really worked on walking, we would consider such a large purchase. Well in his mind he feels like he is walking, and he was looking for this huge toy car today after opening up his gifts. He was disappointed in me and of course that weighed heavy on my mind. Mattie and I feed off of each other, and his funk and moodiness did not help my mood in any stretch of the imagination. Poor Peter had both of us to contend with.

We tried to engage Mattie in building, trains, puzzles, books and other things, but he wasn't interested in anything. It made for a very challenging and tiring day. I wanted to introduce Mattie to "Miracle on 34th Street," a movie that I always loved. Mattie tuned in and out of it, but mostly out of it. At around noon, Marilyn (from RCC), dropped off a lovely chinese lunch for us. Marilyn also made a lovely bread for us and shared with me her special chocolate supply. I feel honored. Mattie loved the Wall-E invisible ink activity book and that engaged him for a little bit, which was a first for the day. While Peter was carrying Marilyn's things into our home, the big Scooby Doo balloon that Marilyn wanted Mattie to have flew away. Thank God Mattie did not see this because that would have been a major meltdown. Peter felt terrible, but I told him not to worry about it, since this could have happened to anyone. Mattie also opened up several gifts today that came through the mail.

We want to thank Kathryn (a SSSAS upper school mom) for the tree that lights up and sparkle foam. Kathryn also gave me some special gifts such as a book entitled, "Gifts from the Sea," and a handmade piece of jewelry made of spectacular red stones that has a lovely heart clasp. Kathryn says the bracelet should remind me of all of those out there that love me. Thank you for such special gifts and all the things you brought back for us from your magical trip to Italy. Mattie received some great dot to dot books, and a look and find book from Brian Boru (our feline friend). Thanks Brian! We want to thank the Coker family for the great Green Monster/Wally books. A must for any Red Sox fan! Thank you for thinking of Mattie! We thank the Torem family for the game, Hopper, Jr. I look forward to playing this with Mattie.

As we headed into the evening, Liza M. (a SSSAS upper school mom) came by to drop off dinner to us. Liza is a marvelous and creative cook, and you wouldn't believe what she cooked for us. I want to share the menu with you because I think a lot of love was put into the making of this food. The menu consisted of: baked brie (with cranberries and brown sugar), tapenade in filo shells, Filet of Beef, roasted potatoes, string beans, zucchini bites, mixed greens with berries, Hannah's (a special family recipe) pound cake (in the shape of a Christmas tree), and assorted cookies and fudge! Quite a menu no?! Liza also gave us all Christmas gifts. Thank you for the "I believe" soaps. What a perfect sentiment. Peter loves his baseball trivia calendar (a great gift for such a baseball fan!) and I look forward to playing dog bingo with Mattie.

When I went downstairs to meet Liza, Jessica who was working at the front desk tonight, handed me more presents that were delivered for Mattie. Peter and I felt bad that Mazie and Jessica had to work our front desk on Christmas, so we put together Christmas bags of goodies for both of them! When I arrived back home, I told Mattie that more gifts arrived. They were from the Putnam family (friends of ours from RCC). Grace you out did yourself. We loved reading the "Night Before Christmas" pop up book and the elf hats, reindeer head band, and rudolf noses were a major hit. I took pictures of Mattie and Peter wearing these fun things. Mattie then had the idea that he would be rudolf the red nosed reindeer and Peter would be Santa. It was great to see Mattie smile and animated for a few minutes today.

Grace also gave me a beautiful guardian angel pin. It is beautiful and will be coming with me to the hospital! We also look forward to listening to the wonderful CDs you sent us! Thank you for trying to help us make this day special.

Peter and I are wiped out today after trying to entertain Mattie, and also deal with his non stop whinning and moodiness. I am thankful that Peter was home today, because trying to manage this alone would have been over the top. I hope that tomorrow is a better day!

As I sign off tonight, I hope our readers who celebrate Christmas had a wonderful and joyful day with your family. Appreciate every good and healthy moment, I know I took all those times for granted before Mattie's illness! Though today was what I would call a depressing day, and that is putting it nicely, I am very aware of how lucky we are to have all of you out there supporting us. To all of you, I send you this quote! Merry Christmas!

"The joy of brightening other lives, bearing each others' burdens, easing other's loads and supplanting empty hearts and lives with generous gifts becomes for us the magic of Christmas." ~ W. C. Jones

Wednesday, December 24, 2008

Wednesday, December 24, 2008

Quote of the day:

"Remember, if Christmas isn't found in your heart, you won't find it under a tree." ~ Charlotte Carpenter.

How to describe tuesday night? Well Mattie did not get sick from the chemotherapy. Which continues to shock Peter and I. The first two times he had doxorubicin and cisplatin, Mattie was a mess. Of course, we celebrate this success, but then as a parent you can't help but wonder if this means the drugs are not working effectively and getting the job done. For some reason I have tricked myself in believing the sicker the chemo makes Mattie, the more "bone bugs" are getting killed off. Now I realize there is NO research to substantiate this feeling, it is simply a feeling. Or an irrational worry. But I freely admit I have it! None the less we had a wild night. Because Mattie is on a large quantity of fluids to flush his system post chemo, Mattie literally was waking up every hour to go to the bathroom. When he has to go, he really has to go and you can't dilly dally around because there will be an accident all over the place. Moving quickly with a child who has had such major surgeries is not an easy task either. So Peter and I woke up this morning feeling like the walking wounded.

Today was an absolute whirlwind. Thankfully Peter took the day off of work. So we were hopeful to have the opportunity to sleep past 6am. However, our lovely construction friends at the hospital started their thing at 7am. So we were up! Linda told us that the PICU was going to have a special visitor this morning, Scooby Doo. As you know Mattie is in love with Scooby, so we knew Mattie would want to meet him, but he was arriving at 8:30am. These days Mattie isn't up at that hour. When Mattie did wake up he was upset that he missed Scooby. Fortunately Linda took Scooby around the hospital, and then landed back at Mattie's room later in the morning. So Mattie started his day off on a good note with a visit and gifts from Scooby. We got a picture of the two of them together. Scooby was a very nice fellow and gave out adorable pirate cups and gear.

Mattie met with Dr. Matt Biel (psychiatrist) this morning, right after his Scooby encounter. They are continuing to develop a rapport, which to me is the cornerstone of a good therapeutic experience, especially when working with a child who is suffering from the aftermath of surgeries, living life in a PICU, and not to mention dealing with a life threatening illness. Any one of these things could make someone anxious, but all three of them are a recipe for disaster. I am very pleased with the doctor's proactive stance with Mattie now, and he faithfully saw Mattie three times this week. Mattie couldn't wait to show Matt his remote control tarantula. Matt hammed it up, and they had a good time talking about the tarantula. But the tarantula also became a therapy tool, since it is a perfect opportunity to talk about what frightens and scares us . Coach Dave, did you realize how versatile this tarantula was going to be!? Mattie also had a visit from Anna, his physical therapist. There are some days Mattie is into working and some days Mattie wants to be left alone. Anna could tell the latter was true today but she still came in and talked with Mattie and also wished us a Merry Christmas. I could see that Anna was truly moved by our Christmas gifts to the nurses and staff. Anna said she did not plan on taking her necklace of "hope, faith, and love" off and thought the statement on Mattie's wrist band was very moving.

Mattie was discharged from the hospital this morning because he wasn't vomiting and appeared to be holding his own. I spent the morning cleaning up and packing the room, and Peter helped in between entertaining and playing with Mattie. Mattie loved having Peter around this morning and clung to him tightly. While we were packing Mattie had a visit from his friend Zachary, Zachary's sister, Alexandra, and his mom, Katie. Katie brought us a lovely homemade pumpkin loaf. Which is one of Mattie's favorite things! But what Katie helped us with tremendously was carrying several of our bags down to our cars. That was an enormous help! With the holidays at the hospital, we were innundated with gifts. The hospital itself gives many gifts to the children each day. The kids love it, but in a tight space it is hard to organize all this stuff. While Zachary was visiting us, two Marines came by with Linda and distributed toys to Mattie. They even allowed Zachary to get a toy. Thank you Linda for making this happen. The Marines were delightful, respectful, charming, and couldn't do enough to make Mattie smile. We took a picture with these fine gentlemen and thanked them for their work and sacrifice they make for us each day!

Once we had loaded up the car and said goodbye to Zachary we headed home. Transitioning home is never easy. Because we have to pick up our lives where they left off. We brought as much as we could into our home, so I could sort it and organize it, but I feel sorry for Peter's car. It has become the storage center for toys and hospital things. Mattie eased into being home but felt nauseous for most of today and did not want to smell food. At 5pm today, we had a very special visitor. Well a couple for that matter. Santa came over to visit Mattie at home. This particular Santa was Ann's uncle Ed. Ed and his wife, Helen, are following Mattie's story from Boston. Ed came dressed up beautifully with sleigh bells as well. He spoke with Mattie and delivered him two wonderful presents, legos and sculpting clay. Seems like Santa really understands Mattie's interests! Here is a great picture capturing that moment.

Santa also brought with him Ann's Aunt Helen, Dr. Bob, and Bob's older daughter, Katie. It was quite a Christmas team. They also brought us a wonderful Christmas Eve dinner, and Mattie loved the homemade cookies! Peter and I loved the ham, and of course Ann's spinach dip. But the true gift that was delivered this Christmas was when Bob sat next to Mattie and said to him that he thought Mattie needed access to both of his hands to open Christmas gifts. That immediately caught my attention because I knew where this was going. Bob asked Mattie how he felt about his cast coming off his left arm. Before I knew it, Bob had Mattie's arm unwrapped and we were all joking about the TERRIBLE smell coming from the cast. After all the cast was on Mattie's arm for about five weeks or so. Bob really surprised me because when I spoke to him last week about the cast he was preparing me for it to be on another week or so. So I never imagined it to come off today. The ironic thing is Mattie truly believes this was a gift from Santa. That Santa stopped by the Henshaw's to pick up Bob just so he could bring Bob to Mattie's home to remove the cast. How adorable! I snapped a picture of Bob and Mattie in deep discussion over this cast. Some how the cast being removed is a very symbolic gesture to me that physical healing is beginning. It is my hope with physically healing we can recapture some other aspects of our lives back. But I know we have a long road ahead of us. I know that when I see Mattie struggling to walk or try to use his arms. I realize I can't be pessimistic, but there are times, I wish Mattie had his sweet body back intact.

After Santa left, I tried to get Mattie to eat something, but he wasn't interested in the least. But he did have the energy to open up several gifts that were mailed to him. We want to thank Kazu (Mattie's buddy from SSSAS) for the wonderful snowing santa. It is fabulous and really puts you in the holiday spirit to see snow falling. We also want to thank Jane and Sandy (family friends of ours) for their care package filled with wonderful costumes, lollypops, and silly straws. That was very thoughtful, and Mattie will have fun dressing up! Especially as a doctor! Maybe he can go to the hospital this way and subject some doctors to some of the stuff they are good at dishing out. Thank you Emily W. (Mattie's babysitter) for the lava putty and scooby snacks. The lava putty is right up Mattie's alley. Anything gross and goopy to the touch is perfect. We also want to thank Marianne and Dave (our college friends) for their dino dig gift and the Pixar short films dvd. Dino digs are one of Mattie's favorite things to do and Mattie and Peter sat down together to watch the Pixar films and they enjoyed it especially seeing the evolution of Pixar as a company!

Last, but not least, I want to extend a special, special thank you to Susan H. Susan is a colleague of mine and besides being an outstanding mental health counselor, she also is an artist with the gift of designing quilts. I have seen many of Susan's quilts over the years at conferences, but I never thought we would get one personally designed for us. Today Mattie received a priceless gift, which clearly was a labor of love. The detailing and the stitching were incredible, in parts of the quilt it almost looks like the stitching zig zags like a puzzle piece. Susan wrote me a letter and I want to share a portion of the letter with you. Susan wrote, "When I first started reading your blog, I saw the picture of Mattie in a superman cape and thought how ironic this situation is. If only there was a real superman, I think his name would be Mattie Brown! His situation has most likely altered how people many decades older than he is view their own lives, what's important, what's valuable, etc. This quilt can be used as a signature quilt. I have enclosed some fabric pens for you to use. I thought perhaps Mattie would like friends, family, and hospital staff to sign their name, well wishes, etc. on the red and yellow squares around the edges." If you are interested in learning more about Susan, or seeing some of her other works, please visit her website: http://www.susanhoppenworth.com/. The quilt is spectacular and Mattie couldn't get over it, and the fact that it says, "super Mattie" really caught his attention. Mattie is already putting the quilt to good use tonight. Thank you Susan for this special gift, which we will cherish.

When Mattie arrived at the hospital on monday morning, there was a gift awaiting him in his room. It was a beautiful handmade wreath with snowmen on it. The snowmen can even light up. The gift was designed by Ellen, one of Mattie's very special HEM/ONC nurses. Several weeks ago, Mattie told Ellen that he liked the wreaths she made for the PICU. He told her he wanted on too. Ellen promised to make a wreath for Mattie, and what a wreath she made. It is adorable. I never thought we would be receiving gifts from the nurses. It seems to me they are our gift, and they deserve gifts in return, not the other way around. This wreath is very special to us, and I took a picture of it for you to see.

Today before we left the hospital, I saw Miki, another one of our favorite HEM/ONC nurses. Miki has helped me through some challenging times with Mattie, especially during the time Mattie had a bad reaction to his platelet transfusion. Miki gave me a lovely gift today and card. I would like to share a portion of what Miki wrote to me. She said, "I know things are hard and lots of thoughts are going through your mind every day. But you always keep yourself intact, having a nice smile on your face, and take such good care of Mattie and everybody else around you and your family. It always amazes me. I have great respect for you as a mother, as a wife, as person, and as a woman." Miki's comments meant a great deal to me today, and I will hold them dear and reflect upon them during all our tough times ahead. Miki gave me some wonderful aromatherpy products, that I will certainly enjoy using. I share with you the gifts that Ellen and Miki gave us, because I think this speaks to the caliber of the nursing staff at Georgetown. They are remarkable women! Something I am thankful for this Christmas season.

I also received a very meaningful and thoughtful letter written to me by a SSSAS father. Peter K.'s son was in Mattie's kindergarten class last year, and I am saddened I did not get to know Peter last year. I have had two opportunities since Mattie's illness to meet him and I am deeply moved by his caring, compassion, and support. His letter today is something that I will keep and read from time to time. It is a letter written by a parent who truly feels my pain and can only imagine what it must be like to walk in our shoes each day. Peter's letter made my Peter and I pause tonight. Because if I thought others don't really get it, I am wrong! You get it more than I know. I want to share just a sentence or two from Peter's letter. Peter wrote, "When I see Mattie's smiling face on the blog, I am shamed by my worldly concerns. I am sure many others feel the same way. In this sense, Mattie has already changed lives in a manner great people do but over the course of an entire lifetime. You and Mattie have accomplished this during your season of trial." Peter, I completely agree with you. Mattie is great, and he is certainly educating all of us about the importance, value, and meaning in life. Thank you for your kind letter, it means more to me than you will ever realize.

As I sign off this Christmas Eve, I want to wish all our readers who celebrate Christmas a beautiful, meaningful, and loving Christmas. I would be remiss on this special day, if I did not acknowledge all of Team Mattie and all our Mattie supporters. For all of you, I am forever grateful. We could not accomplish what we do without you. I sincerely mean this. I also want to thank two special members of Team Mattie, Alison and Ann. Alison, thank you for managing our Mattie Fund and for helping us with communications and outreach and Ann, what can I say? There is a special place for you in heaven. As my friend Lorraine says, "Ann=a miracle!" So true! Ann, we are thankful for your energy, your passion, and your hope for Mattie and our family. Thank you for doing an outstanding job coordinating the Team and for keeping the dream of a cure alive. With Team Mattie, I never feel alone.

"This is the message of Christmas: We are never alone." ~ Taylor Caldwell (1900-1985), English novelist.

Tuesday, December 23, 2008

Tuesday, December 23, 2008

Quote of the day: "Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have." ~ Norman Vincent Peale

Mattie has been a real trooper. He dealt with doxorubicin and cisplatin beautifully last night and even this morning experienced no nausea. This of course is spectacular, but it is unnerving because it is such a different experience from the first two times these drugs were administered. The first two times, Mattie was very sick and did non stop vomiting. This was before we found Kytril, a very efficient anti-emetic. Now we have Kytril on board, so perhaps this explains the major difference. Mattie got up this morning, but was too tired to get out of bed. He wanted me next to him, so I jumped into bed and rubbed his head and face and he fell back to sleep, and so did I. What you need to understand though is while Mattie is getting this chemo he is also getting something called mannitol. Mannitol in a way is like a diuretic, and literally Mattie has to go to the bathroom almost on the hour. This would be fine during the daytime hours, but not so fine at night while you are trying to sleep. In the past Mattie would not get up in time, and we would land up having to change him and the bed each time he had an accident. Last night there were no accidents. Tricia, Mattie's nurse, did remind me though not to discard Mattie's urine without wearing gloves, because the chemo is excreted in the urine. So I heeded her advice and each time he voided I used gloves. However, it did not matter, the chemo went right through the glove and today I have a small blister on my finger. So now I am moving to wearing double gloves, but if these chemo drugs are affecting my skin this way, God only knows what it does to Mattie's body?!

While we were resting this morning, my friend Susan S. stopped by. She brought me a hot chocolate and a chocolate muffin. You just can't have enough chocolate, any good counselor (as she is) would know this! Susan also brought Mattie some wonderful gifts such as activity books, a snowflake picture frame kit, many wonderful stories to read, and a game board called, Zooreka. Mattie and I had a good time playing this game together. The goal of the game is to build your own zoo, and taught some clever trading and bartering skills. After we played the game, Linda had invited Mattie to the floor's pizza holiday party. So when Mattie heard about pizza, he seemed motivated to get into his wheelchair and out of his room. Mattie ate four pieces of pizza, which was incredible. He practically did not come up for air. He then moved to some of the craft activites. While doing crafts, we had a visit from Ellen. Ellen brought me a wonderful lunch and she brought Mattie a shake and a happy meal as well. I appreciate you giving Mattie the game Clue and a new movie called, "Everyone's Hero." We look forward to seeing it with him! I personally appreciate the dreamtime neck wrap that I can put into the microwave and work out some of the amazing tension both Peter and I hold in our necks. That was a very thoughtful gift! But Ellen really saved the day for me. I have developed huge canker sores in my mouth. But I never had sores like this before. They are so bad and painful, the left side of my face is swollen, I can bearly eat, and talking is painful. I was going to wait for Peter to bring me some over the counter medication after work, but Ellen took it upon herself to get them immediately for me. I really appreciate this thoughtfulness and I am hoping it helps me feel better soon.

In the midst of trying to have lunch, Mattie demanded a lot of attention as he was struggling with creating a foam santa house. I don't know if you have ever worked with a foam structure, but it is like working with jello. It isn't easy. Both Ellen and I were trying to work with him, but then I suggested that we use hot glue on this structure otherwise it wouldn't stay in place. So Linda jumped in and worked with Mattie for a while, until Dr. Matt Biel (psychiatrist) came up to work with Mattie. Matt and Mattie, played for a while in the hallway and then eventually they migrated to Mattie's room. Mattie is building a rapport with Matt, and I am very pleased to see Matt trying to relate to Mattie and play with him on his level. I think this is very therapeutic, and Mattie is in a hospital surrounded by women, and I think positive role models like Jey and Matt are very important for Mattie to see on a regular basis! After Mattie's appointment with Matt, Anna arrived. Today Mattie and Anna had a long physical therapy session. Mattie did try to walk twice, but he complained that his feet were bothering him. It is hard to know whether this was his excuse or the reality of the situation, since in the past chemo has affected the skin on his feet. I was so pleased to see Mattie and Anna interacting so well.

Mattie also had visits from Jey, Jessie, and Jenny. All his favorite people. They all came to wish him a Merry Christmas and Jey even gave Mattie one of his flashlights. Mattie was very pleased by this acquisition. Jenny has been working on transforming a large cardboard box into a Christmas house. This project is looking good and has a realistic looking TILE fireplace inside of the structure. After all Santa needs a way to enter this house! If you recall, one of Mattie's clay pieces that he designed with Jenny and Jessie is on display in a gallery in the District of Columbia. This gallery features the artwork of other local cancer patients. Though I would like to see Mattie's work in person, it most likely isn't going to happen. But Brandon and his family stopped by today. Though Brandon (Mattie's big buddy) isn't undergoing chemo anymore, he still needs scans and check ups. Today was a scan day for Brandon. Mattie got to meet Brandon's sister, Ashley, who is home from college. The wonderful treat though besides seeing this lovely family, was that Brandon's dad took a picture of Mattie's art work which was on display in the gallery. He sent me the picture, so that I wouldn't miss out on this experience. Thank you Jim! Below you will see Mattie's picture. It is a butterfly holding a large acorn, and Mattie described this art for the therapists by saying, "This little butterfly is strong and can carry this acorn on its back." Mattie is my little butterfly for sure!

While Mattie was working with Anna, Ashley (as many of you recall Ashley led the prayer service for Mattie a few weeks ago) came to visit and she brought her son, Sam, with her. Mattie and Sam went to RCC together. Ashley brought several very special gifts for Mattie, all from Bob #2's, Aunt Alberta. Mattie is now the proud recipient of a Boston Red Sox blanket and a beautifully framed official MLB, Dustin Pedroia photo (Peter really liked this one!). In addition, Aunt Alberta is very artistic and painted two beautiful Christmas ornaments for Mattie. One ornament acknowledged the years the Boston Red Sox won the world series and the other ornament had Mattie's name on the front surrounded by holly. I took pictures of these creations to share with you. I want to thank the Glennon family for yet again supporting us and we are touched that these gifts came all the way from Massachusetts. Thank you Mema and Pipa for the lovely card explaining the gifts, it meant a lot.

In the midst of a given day here, Mattie can accumulate a lot of gifts. The gifts are coming from
very generous families who donate Christmas gifts to the children in the hospital. Mattie also received three lovely Christmas stockings from Linda. Mattie liked them so much, he put them on his feet. I just had to capture this with a picture. When I snapped this picture, you have to understand Mattie had a full day, and was beginning to unwind and watch the movie, Wall-E.

This evening we had a visit from the Holm family. Evelyn was one of the first mom's I met at SSSAS, and little did I know that her husband was Coach Dave. They are both such wonderful, sincere, caring, and supportive people. They delivered us a marvelous dinner, and the brownies are incredible. Those of you who read the blog must think I am physically turning into a piece of chocolate. Maybe so, but what a way to go. In addition, to a lovely visit and dinner, they also gave Mattie a gift right up his alley. In line with the bug theme, Dave got Mattie a remote controlled tarantula. You got to see a picture of this thing to appreciate it. It is life size and looks very real. Mattie has scared four nurses and Linda today with it. It was the perfect gift for Mattie, and he became very energized by the whole thing. I also want to thank Evelyn's mom for the meaningful book and healing tapes by Bill Johnson. It was very thoughtful of your mom to think of us and to be praying for Mattie.

As we head into Christmas Eve, I sense a major push to try to get Mattie home. Since Mattie handled chemo well today, the thinking is if he does well tonight and into tomorrow morning, Mattie will be discharged from the hospital. The hospital staff is trying to coordinate the delivery of medications for Mattie to our home today, because they are afraid that if they did not do it today, Mattie would not get it in time if he does go home tomorrow. Certainly going home would be nice, but I also have to tell you packing up again, after we just got here is a total killer. In addition, Mattie will most likely become neutropenic next week and land up right back in the hospital. This is a torture beyond belief on so many levels. Yes I realize it is the Christmas season, tomorrow is Christmas Eve and the next day is Christmas, but to me, it feels like another day in this never ending journey. In addition, we have learned that Mattie's follow up CT scan to monitor the lesions in his lungs is scheduled for January 8th at 10am. This date weighs heavily on my mind. Living life from one scan to the next, one chemo drug to the next, and from one doctor to the next is not only frustrating but it further emphasizes the powerlessness we feel.