Saturday, March 28, 2009

Saturday, March 28, 2009

The poem featured in this picture was written by Liz Pester. Liz is one of the artists who works at Georgetown. Liz met with me one evening while I was staying in the PICU. Based on our conversation she created this poem about HOPE. An important word to Team Mattie. This poem is framed and featured in the Children's Gallery at Georgetown.

Quote of the day: "Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together." ~ Vesta Kelly

None of us could get up this morning. A week in the hospital wore us out. When we did wake up, I made Mattie homemade waffles and then we all got ready for the day ahead. Mattie was very excited to see his Lego hospital featured in the Children's Art Gallery at Georgetown. Today was a day about connections, community, and artistic expression.

When we arrived at the Hospital, we entered the first floor hallway where the Children's art gallery is located and we met up with Linda. Mattie was happy to see her. I am thrilled this event was on a weekend, so that Peter could experience the caring community I have been describing day after day in the blog. After talking to Peter one weekend, I realize we experience the hospital differently. I am not sure why that was a revelation to me, but it was. Of course it makes sense though. Peter works during the day, and comes to the hospital after hours. After hours when Linda, Jenny, Jessie, Linda's interns, and most volunteers are not around. I could try to describe how fabulous having these ladies around is, but I assure you no description does it justice. Sometimes you have to just live it. Peter lived it today, and I think after leaving today's event he felt energized. We are thankful to be a part of Georgetown's community, and to have an event to celebrate the artistic talents and expressions of the children was simply special and memorable.

Mattie was motivated to find his Lego Hospital shortly after we arrived. I think he was curious how his hospital was going to be displayed and he also was looking forward to seeing his story in print. As a recap, when Mattie made this Lego hospital at home over a week ago, Mattie and I landed up playing with the set. We created a whole story about two bad boys who were patients at his hospital. In any case, this week, Sally the story lady captured this story on paper. It was very special to see Mattie's story in print and framed. Laura, one of Linda's interns, took some pictures of us in front of Mattie's creation. You will notice two framed posters behind us. One is Mattie's story and the other is a poem that one of the hospital artist's created based on a conversation I had with her one day in the PICU. I was so surprised to see my words placed into poetry!

Since you can not see the actual story in the picture, I copied Mattie's story below for you. In fact, Peter read Mattie's story aloud to a crowd today at the hospital. Mattie watched on, very proudly! Below Mattie's story, I also copied the poem that Liz created based on our conversation. She entitled the poem, Intensive Care. Enjoy!

MATTIE'S STORY!

Once upon a time, in the Lego City, there was a hospital made of Legos. It had a hot tub with scrub brush, a computer, and a huge garden with a fountain and parrot, and flowers and trees, and a bench to sit on and read and enjoy the fresh air. It also had a playhouse with a swing. Some people called it a “tree house,” because there were trees on top of it. You got into by climbing up a ladder. There was also an ambulance, a stretcher, and a helicopter.

One day at the Lego Hospital, there were two bad boys, Steve and Paul. They did not like the food there, so they planned an escape to The International House of Pancakes. First, they ran into the IHOP, but they were caught by Joe, the helicopter pilot, who spied them as he was flying by.

Next, they stole an ambulance, and this time they made it to IHOP, but crashed the ambulance in the parking lot. They even managed to get a table before Joe, once again found them and flew them back in the helicopter. Luckily the hospital had Mattie, the engineer, who was able to fix the ambulance.

Next Steve and Paul, snuck out, and while Joe was getting reprimanded by the hospital staff for spending all his time chasing down the boys, and not rescuing people, the boys stole the helicopter! Again, they crashed into the IHOP parking lot. But this time, they were able to sit at their table, and order a nice stack of pancakes. But, just as the pancakes arrived at the table, steaming hot, in drove the ambulance driver, Sam, right into the restaurant, crashing into the pancakes!

So Sam drove the boys back to the Lego Hospital, and waiting for them there were their parents! They were angry. Thankfully, Mattie the engineer was able to fix both the helicopter and the IHOP.

The boys’ parents agreed to pay to have pancakes delivered fresh daily, to the boys at the hospital.

Intensive Care

Storage, or an assigned room, would be nice:
Room at an inn,
For the times we know we’ll be back
For our child’s treatment.

Always moving in, or moving out:
Sharing the same bathroom,
Showers away from home,
The difficult parking…

All I want is a room with a view;
Anything to look at but these blank walls,
The monitor; the steady drip of medicine,
Marching into battle.

Buzzers, bells, and footsteps.
Marking hours that mock time:
Sounds that my noise-maker drowns out
In a waterfall of rain, to wash away pain:
A blessing on my sleeping boy.

And I sit here, amazed at the maze of the hospital:
The noise…. Stuck here for months on end,
Wanting movement of any kind,
To multiply “Child Life” by ten,

Support groups: a place to meet other parents
That is not too small or cold….
Maybe, in my dreams, a terrace:
A garden for children to play in, to be with our son,
And breathe in open air.

For M’s parents, and for all…..

By Liz Pester, Studio G artist

Brandon and his mom, Toni, also came to today's event. Brandon is a good influence on Mattie, and I am happy that he plans to make frequent visits to the hospital. I took a picture of these two buddies together. I am not sure who is cuter!

There were a lot of artists present today at the event. Many of whom we knew, because they work with Mattie during the week. Jude, a musician, was there with his musical instruments, and had all the kids singing and tapping to the beat. Peter joined in the fun. In fact, Peter had a great time with Jude. Peter is very musical and has a beautiful singing voice. He and Jude landed up singing the afternoon away. I snapped a picture early on of the singing circle, but as the afternoon progressed, Peter was standing next to Jude and a fiddler, and they were all harmonizing together.

While Peter was singing, Mattie decided to remove himself from the noise. Mattie did not like the loud sounds, and keeping Mattie still these days is a feat. So he instead spent the afternoon, on his own private roller coaster. He sent his wheelchair down the ramp of the Children's art gallery numerous times. Mattie was making it into a game, as he tried to collide into people as he zoomed down the ramp. Of course we never allowed this to actually happen. His racing buddy, Meg (one of Linda's interns) was there, and Meg spent a great deal of time running up and down the ramp with Mattie. Linda and Jenny got involved as well. Kathleen, one of Mattie's great HEM/ONC nurses was working today. Kathleen is a big Mattie supporter! Brandon went up to get Kathleen and alerted her that Mattie was here. Kathleen knew Mattie would be at the hospital today, and was looking forward to seeing Mattie's Lego set! Kathleen was a good sport, and watched Mattie go down the ramp, and practically run her over. Check it out!

Left: In the picture you will see Meg running with Mattie. Kathleen is bending down to catch

Mattie, and Laura is watching the whole process!

Right: The Group!

In the back row: Peter, Vicki, Meg, Jenny, and Linda

In the front row: Kathleen, Mattie, and Brandon

We had a lovely time at Georgetown today. I want to commend Linda for her efforts. She worked hard at framing and positioning each piece of art. In fact, it was Linda's idea to transform this bleak hallway into a Children's Gallery. Something the hospital GREATLY needed. Linda advocates for her children and their needs, and every time I walk down this hallway, I will remember today. Even years from now. I am happy we went because this is a memory I don't want to forget.

As we left the hospital, Mattie had goodies with him, a big rainbow balloon and several cupcakes. Upon leaving, Peter had two comments. The first was, he saw why I love aspects of being at Georgetown. The second observation he had was he noticed that Mattie has a certain magnetism. Mattie seems to win the hearts over all those who work with him. He is my son, so I naturally love him and think he is special, but when I see others treat him in this fashion, it just makes me smile.

When we got home, I had to contend with laundry. I wanted that out of the way, so that I could pack up again tomorrow to head back to the hospital on Monday! While doing laundry, we had a lovely visit from JP (our neighbor). JP introduced us to his mom, Jackie. Jackie is visiting from Spain. She brought Mattie a cute stuffed bull and mug. We had a delightful visit with Jackie and Mattie also appreciated the dunkin donuts they brought.

Tonight we had a lovely family dinner together. Mattie joined us at the table, which he doesn't always do now a days. He even said grace. We want to thank the Kelliher family for a lovely and generous dinner from the Daily Grill. Mattie loved the pasta and pie and we loved the fresh fish and wonderful vegetables! As we head into Sunday, Liza (one of Mattie's favorite hosptial volunteers) will be coming over to spend some time with Mattie so Peter and I can get a break for a couple of hours. It is hard to believe we go back in on Monday for a week, but even harder that we are entering our 9th month on this cancer journey.

I end tonight's posting with a message I received from my friend Charlie. Charlie wrote, "Two things came to mind with Friday's blog. One was how much better and smoother everything goes when you work together. There were lots of examples of great teamwork between you and Pete, the physical therapy people who worked with Mattie, the GWU bake sale, etc. Amazing how much more we can do when we work together; the whole is often more than the sum of the parts. The other feeling I had from the blog was humor and laughter. How much brighter is the day and lighter the load when we can find something to smile or laugh about? Watching the adults ham it up when racing with Mattie, imagining Mattie singing them to sleep with a lullaby, just brought a smile to my face. I am glad to hear that both you and Pete got to spend some time with others; as you well know, part of staying healthy under stress is maintaining connections as much as possible. I am glad you were both able to get out for a while. I reflect on how far you've come in a short time; it was not very long ago that you could not leave for even five minutes without Mattie panicking; now you are able to spend some time away to everyone's benefit. I hope that we continue to progress on this positive route."

Friday, March 27, 2009

Friday, March 27, 2009

Quote of the day: "Wherever you go, no matter what the weather, always bring your own sunshine." ~ Anthony J. D'Angelo, The College Blue

Mattie cleared methotrexate from his body at around 4am. His nurse, Katherine, came in to tell me while she was drawing blood at that time. Even at that hour in the morning, I knew what this meant for us. It meant we were going home. Peter got up at 6am, and started getting himself ready for day. Before he left for work, he took practically everything in our room to his car. So when I left with Mattie later in the day, I only had to worry about Mattie and a few bags. That made life so much easier!

I landed up waking Mattie up at 9:30am, because he was scheduled to have a physical therapy session at 10am. Certainly I could have left the hospital before his therapy session, but I feel therapy is important for Mattie, and I was more than happy to wait a few more hours at the hospital, so that Mattie could work with Anna. When Mattie woke up, he had his oatmeal and then willingly changed into regular clothes. I think he was excited to be going home.

Nicole, Mattie's great HEM/ONC nurse, greeted Mattie this morning and she took his vital. He then headed to the playroom to wait for Anna. While waiting, I helped him log onto one of the childlife computers. We went to highlightskids.com. Mattie loves playing several games on that site, as well as doing the hidden pictures. The irony is, I have noticed that practically all the volunteers know Mattie. I guess that isn't surprising, we are certainly there most days, but the fact is I don't know many of them. Several volunteers came over to watch Mattie play on the computer. In addition, a patient's mom gave Mattie a glazed donut while he was playing, and he was thrilled. He devoured that up! Nicole came to find me around 10am, to let me know that Anna was delayed and wouldn't be up until after 11am. Since Mattie was occupied, I did not mind waiting in the least. In many ways there is more excitement for us in the playroom than at home.

Nicole came to talk with me about the discharge process and as we were talking she asked me about Mattie's fingers. Particularly if he had been painting. I knew exactly what she was asking me. Like myself, she assumed Mattie's hands were dirty. However, they were clean. Mattie's fingers, toes, and rump have all been discolored or darkened in pigmentation due to chemotherapy. I noticed this change weeks ago and mentioned it to Dr. Gonzales, who assured me this can happen and once chemotherapy stops, Mattie's skin coloration will return back to normal. However, Nicole hadn't noticed this before and suggested I follow up with Dr. Synder about this. Since this isn't that common of a reaction. It was a good idea, and I did do this today. Fortunately everything is fine. But I agree with Nicole, the skin discoloration is disconcerting. If this is what chemo does to your skin, it makes you wonder what is going on inside the body.

Mattie was excited to see Anna today. He was motivated to walk again, and Meg was on board today to be his racing partner. Meg had a team mate today, Marla. Marla is one of Anna's physical therapy interns from the George Washington University. Marla is delightful, and I was saddened to hear this was her last day of her clinical rotation. Meg and Marla were a dynamic duo. You should have seen how they hammed it up, falling on the ground, and even falling asleep while Mattie was singing them a lullaby while racing. At one point, Anna and I were just hysterical listening to this while we were observing Mattie. Some how they make physical therapy, which can be a painful and stressful process, fun. Never under estimate the therapeutic power of laughter. Mattie is still working hard, but why not work hard, and also emotionally feel good about the process. I snapped some pictures today of the race. There were more obstacle courses today that Mattie really had to negotiate. But he did it quite well.

Left: Anna (in orange observing Mattie), Marla in pink, Mattie, and Meg. Clearly you can see Marla and Meg are doing very exaggerated moves.

Right: Anna is cheering on Mattie as Meg, Mattie, and Marla are coming to the finish line!

Left: Mattie using his reconstructed knee on his right leg to bend over and reach for a bean bag frog. It has taken quite a lot of therapy to build up the confidence to do this!

At the end of the race, Mattie got to pick out a prize. He chose two plastic trucks for his sandbox, which he was eager to try out when he arrived home. After physical therapy was over, Mattie was ready to pack up and get the show on the road. Linda helped us to the car. Linda and I had a conversation today about the transition that is happening in our life in May. The transition from our PICU life to our home life. Clearly Linda understands the complexity around this. Sure we will be happy to be home, but we are leaving behind an incredible support network at the hospital. This has been our home for eight months and with leaving comes a lot of apprehension. Linda discussed ways to manage this transition that were helpful to hear.

When we arrived home, Peter was home to help us. Peter worked from home today. Peter did most of the unpacking of things from the hospital and I helped Mattie get into the sandbox. He was thrilled to be outside and in his box, playing with his prizes he acquired from therapy. I ate a quick lunch and then headed out the door to visit Ann's parents. Ann arrives home late tonight from her family vacation, but I had promised her parents that I would visit them if Mattie got out of the hospital today. I wasn't going to let them down. Before I visited them, I bought Ann's dad some New York newspapers and stopped off to buy hot tea and pastries for her parents as well. It was another delightful visit. While I was at the assisted living center, Ann's mom received some phone calls, and it was wonderful to hear how happy these calls made her. It speaks to the importance of human connections at any age. After she got off the phone with one of her childhood friend's she relived some stories about this time in her life. I was happy to spend the afternoon with my newest hot tea buddy and to see Ann's parents enjoy the pastries together. As the afternoon went on, Tanja (a SSSAS mom and friend) came by to visit with Ann's parents and it was nice to meet up with Tanja too.

When I arrived home this afternoon, Mattie and Peter had been busy building with tinkertoys and knex. I am happy to say that Peter went out tonight with some of his friends. Peter is always hesitant to do this because he doesn't want to burden me with extra coverage time. However, I was happy to see him get out and clear his head. We all need this, and I know after I got back from the assisted living center I felt better than before I left.

This evening Mattie and I had a nice dinner together thanks to Janet Heddesheimer. I have known Janet since I was a student at GW, since she is the associate dean in the Graduate School of Education. I appreciate Janet's support and generosity, and for providing Mattie with his food of choice this week, bread and butter. We thank you for the tasty treats, and for the movie, The Blue Butterfly. This movie is based on a true story of a mom who helped her child overcome a life threatening illness. Mattie loved his Scooby Doo Easter card, and I know he will enjoy using the gift card to Pizza Hut that Janet gave him. Janet came up with a great idea, she is funding a way for Mattie to surprise Peter and I with a gift of a pizza. So with the help of an adult in his life, he will be able accomplish this surprise, and of course Peter and I will not let on that we knew about the gift card.

After dinner, Mattie decided to play with bowls of water and the syringes he has been accumulating from the hospital. He had a great time transferring water from one place to another with the syringe. He was placing various objects in the water to see which ones would float, I felt like I was watching a science lesson in school. Check him out!

We want to especially thank Chi Sigma Iota (CSI), the Rho Theta chapter at the George Washington University (the counseling honor society on campus). CSI sponsored a bake sale on campus, with the proceeds going to Mattie's fund. I want to thank everyone who baked for the sale, as well as volunteered at the sale. I especially want to thank Carrie Barone (my teaching assistant), Donna Paknejad (a former graduate student), and Tess Marstaller (a former undergraduate student) for their dedication, energy, and passion behind this sale!

I end tonight's blog, with two messages I received. The first one is from my mom. I appreciate the lovely e-mails I received today about my mom's e-mail to me. My mom wrote, "The title of one of Ernest Hemingway's most widely read books, "The Sun Also Rises" is symbolic of the struggle of two people dealing with the consequences of war and it so aptly reflects my reaction to seeing Mattie on your blog walking with his entourage on the fifth floor and displaying his gold medal proudly after "winning" his race with Meg. My heart skipped a beat and my spirits soared to new heights because our Mattie Sun Also Rises Again from his wheel chair where he has been recuperating for so many months to walk again like he did before all this happened."

The second e-mail is from my friend Charlie. Charlie wrote, "Hello from Newport News, Virginia--still too early in the morning. I managed to get on line this morning to read the blog and I am so glad that Mattie had a good day on Thursday. So much of how we react to things is our attitude and it is amazing how much more we can accomplish with a positive attitude. Four laps around the fifth floor is pretty amazing and I want to congratulate Mattie on that accomplishment. I think he will be back up on his feet and playing with his friends sooner because of his change in attitude. Anytime I miss a night's sleep now I think of you and just how exhausted you are and I wonder how you and Pete keep going. You are my personal heroes and role models for those days when I just don't feel like giving it 100% effort; then I realize what I could be facing and get going. I think of Mattie spreading sunshine and I try to keep a positive attitude because I can clearly see the difference between days when someone is positive and one when you are not. I wish you the energy to keep going and the faith to keep moving in a positive direction. I really hope you get some much needed rest on this next "space" at home."

Thursday, March 26, 2009

Thursday, March 26, 2009

Quote of the day: "We are all connected to everyone and everything in the universe. Therefore, everything one does as an individual affects the whole. All thoughts, words, images, prayers, blessings, and deeds are listened to by all that is." ~ Serge Kahili King

Mattie woke up in a very good mood today. He wanted to eat and he wanted to play. Erin was his nurse and some of you may recall that Erin and Mattie made a deal with each other a few weeks ago. He gives her hugs and in return Erin gives Mattie syringes to squirt water at people. Mattie was just in rare form today, he was talkative, lively, and engaged for the most part.

His first visitor for the day was Sally the story lady. Sally dresses the part of whatever story she is going to tell during her visit. Today she was dressed to go on an archaeological dig. Before Sally told her story, she had Mattie tell her a story about his Lego creation. Specifically the lego hospital creation he designed for the art show this weekend. Fortunately Mattie was able to tell a story around the set, because he and I played extensively with this model when we were home last week. So Mattie told Sally his story about the two bad pediatric patients who live in his model. Why are they bad? They are bad, because they cleverly find a way each night to escape the hospital because they do not like the food. Each night they escape to the International House of Pancakes! Sally got a kick out of this story, and wrote it down. Apparently the story will be blown up on paper and framed for the art show. I can't wait to see Mattie's story on display. I will be sure to take plenty of pictures on Saturday!

Mattie then headed to the childlife playroom with Sally and had the opportunity to hear one of Sally's stories. I unfortunately missed the story because Mattie had me running back and forth getting things from his room. I also had the wonderful opportunity to chat with several of the HEM/ONC nurses today. Just lovely, bright, and charming ladies! I feel like Peter and I are taking fatigued to a whole new level. In fact I feel so tired that there is no amount of sleep at this point that will help my situation or my mood.

Mattie and I worked on his Alice and Wonderland puzzle this morning and then we met up with Anna, Mattie's physical therapist. Mattie wasn't in the mood to do physical therapy at first, but after our conversation last night, he had a change of heart. Yesterday evening, Mattie and I were sitting on his bed and building a pirate Lego set, when he stopped, looked out the window in his room and told me he didn't like looking out the window. When I asked why, he said because all he sees through the window are people who can walk and run. Things he can't and will never be doing. I explained to him that his disability is temporary. That he will not always be in a wheelchair. He did not understand this at first. I have explained this to Mattie numerous time and so has Peter. But I think this is a hard concept to grasp, a temporary disability! Why are some people temporarily in a wheelchair and others in a chair permanently? I told Mattie that he needs to work hard in physical therapy and to exercise his legs, and it is through doing this that he will be able to walk again. Well something seemed to have clicked, because today he did FOUR laps around the entire fifth floor. I assure you that is a lot of walking. He kept requesting to do another lap! In the past Mattie, at his best, could do two laps. I think my conversation with him helped, but I also attribute Mattie's motivation and energy to do these laps to Meg.

Meg is one of Linda's interns, and she is Mattie's racing partner. Meg hams up her racing skills, and pretends to trip, fall, and be out of breath. Meg also made gold medals for Mattie today after each race that he won. He was loving the attention, and he enjoyed watching Meg struggling to keep up with him. Mattie set up an obstacle course with cones, bowling pins, and balls. You just had to see him in action. I need to take Meg and Anna home with me, because they both really get him up and moving. Check out some of the wonderful photos I took today during the races. Jey, Mattie's "big brother," Jenny, and Linda also observed these races and everyone was impressed with Mattie's stamina.

Left: Mattie in action with Anna

Right: Meg, Mattie, and Anna

Left: Mattie, the gold medal winner!

Mattie had a special visitor today, Mary Dressendorfer, his technology teacher at St. Stephen's. Mattie said he wanted to do computer time today, but in true Mattie form, when Mary arrived, Mattie did not want to do this. Instead, Mary worked with Mattie on his puzzle and on the creation of his huge cardboard box worm house. We have moved passed roaches today, and are focusing in on worms and snails! Quite a box, no? But what you can't see is inside it is stuffed with worms and snails made out of model magic.

Mary gave me some time to myself to actually eat lunch. I really appreciated her visit and her commitment to Mattie. I had an opportunity to chat today with Mary about a list of websites and educational software that Linda could consider for the childlife computers. Mary has been giving this request a great deal of thought. Actually so much thought, that she has been designing a portal system for Linda so that all the pediatric patients could access it through the Web. Mary has designed a fabulous portal resource for St. Stephen's, and I am not only thrilled she took this on for Georgetown, but am deeply honored. In addition, Mary wants to name the portal after Mattie, so that Mattie's presence will always be remembered at the Hospital. I was very moved by Mary's meaningful idea, but of course will need to see how Linda feels about this. I want to remind our readers that Mattie's school in having a spring break this week, yet Mary came to visit Mattie and on her own time is working on this Web resource for the Hospital. What do you say about such a lady? She is a gem and from what I can see she has found some great educational links for children. Thank you Mary for your generosity of time, energy, talents, and skills.

Mattie had an infusion of MTP-PE today and did very well through the administration. Mattie had a good lunch and we read two books together while he was eating. After his lunch, he worked with Laurie, a volunteer, on his worm house. He really loved making grass for the house today.

Then of course without a doubt, out came his ABBA CD. Even Dr. Shad, the director of the HEM/ONC practice stopped by today and told Mattie how much she likes ABBA. The music is catchy, it is hard not to like it or feel good hearing it!

As the evening approached, Mattie was looking forward to having a movie night with Meg (Linda's intern). They literally made a blanket fort in the room, and had Linda's star projector machine going in the room. They watched the movie Curious George together. The room is small, so I gladly removed myself from the process. There was literally NO where to sit on the fifth floor this evening, so I had to leave the floor, and sat on the second floor of the hospital. It was an uncomfortable position, because I do not like venturing far from Mattie while in the hospital. But it speaks to my former comments weeks ago, that a place to turn to for serenity and peace on the fifth floor is so needed. While Mattie was watching the movie, Peter arrived from work and we ate together on the second floor. We want to thank the Wright family for a wonderful dinner from the California Pizza Kitchen. Mattie loved the bread and butter. Butter is his food of choice this week!

After dinner, I had some work to do, and Peter went back up to play with Mattie. We are still awaiting Mattie's methotrexate level to fall. It is currently .15, so close to .1, but not low enough yet to be released from the hospital. We have no doubt that by tomorrow morning, he will be good to go. So Peter and I have a night of packing to look forward to, just so we can turn around and come back to the hospital on Monday for a week. Lovely! But next week is a special week, because next Saturday is Mattie's birthday! I can still remember the day he was born. He was the picture of health, and I would never have expected him to become so ill. Needless to say, his illness continues to be an eye opener for me. You can't put off something you want to do until tomorrow or until things settle down, because in some cases tomorrow may never come, or perhaps not the tomorrow you expected.

I end tonight's blog with two messages. The first one came from my mom today. My mom wrote,
"The thoughts that follow are inspired by your blog and the pictures of Mattie with all his friends and his spectacular creations: We always knew that Mattie Moon lights the sky and shines through the inky night when everything that surrounds us is obscured by darkness. Now, his daylight personae has found its true identity: Mattie Sun is like the center of the universe where instead of planets revolving around him there are a collection of people: talented artists, musicians, poets, dancers, storytellers, healers, nurses, therapists, technicians, counselors, teachers, friends and family that are drawn to him by his unique magnetism and their hope that like the sun, Mattie's magical presence in their lives will long endure so that his special "sunshine" exhibited throughout his struggle for survival will remain alive and an inspiration to all people dealing with cancer. What a profile in courage our little hero has given all of us."

The second e-mail is from my friend Charlie. Charlie wrote, "It is 5:30 in the morning and since I work nights, I am not particularly lucid early in the morning but I wanted to let you know I had gotten up, read the blog from Wed and wanted to respond as best I could before I left on my trip. It certainly was a tough day on Wed for both you and Mattie. Exhaustion makes everything so much harder; doing even the simple things is like wading through quicksand. Every time you stop moving sleep wants to pull you back down into the pit. And if you are not feeling well on top of that, well, it takes a hero to keep going. Lots of people were helpful and kind whether it was actively bringing things and entertaining Mattie or doing their best not to disturb you when you were trying to rest. I do want to tell you that I especially love the picture of Mattie and his hat; I just don't think you could have done it justice with a description. Is Mattie going to design a line of hats for Easter? I am sure he can come up with some creative, colorful designs for his friends. Maybe we'll get to see cockroaches in Easter hats (That comment is from Brian Boru, Mattie's feline friend)?"

March 25, 2009

March 25, 2009

Quote of the day: "Treat people as if they were what they ought to be and you help them to become what they are capable of being." ~ Goethe

Last night was challenging. Not so much for Mattie as it was for me. I felt very sick, so much so I had trouble falling asleep. Mattie was up with me, and at around midnight, I went to lie down next to him to rub his head and neck (in hopes of relaxing him), and we both landed up falling asleep in his twin sized hospital bed. I eventually woke up, but this morning I told Mattie that he made my stomach feel better. When I told Mattie how I felt this morning, he said, "it was the power of being next to me!" Indeed!

Mattie woke up this morning around 8am. He was not in a good mood or happy. His stomach was bothering him, and in fact, he attempted to vomit three times. But nothing came up. He was in pain, and we called his nurse, Kathleen to help us. Kathleen gave Mattie Kytril, his anti-emetic and zantac (an antacid). After the IV administrations of both medications, Mattie went back to sleep until 11am. I napped next to Mattie periodically this morning, which should tell you how tired I am. Both of us were wiped out and I have no doubt Peter wasn't far behind since he was up throughout the night to help Mattie with bathroom runs. The positive note is that Mattie's blood Methotrexate level is at an all time low for 24 hours post infusion. Ellen, Mattie's wonderful night nurse, posted the results during the middle of the night for us. His blood level is 5.97 and next to the number, Ellen wrote, Yipppppeeee!!!! Remember to get discharged Mattie's blood level must be .1 or below!

While Mattie and I were periodically napping this morning, I had a lot of visitors. Normally I would get up, but I wasn't moving this morning. It was almost a comedy show. I had one of the Eucharistic ministers stop by. I was half out of it, and she came in and gave me holy communion. Mattie was lying on one of my arms, and I couldn't move. Then I closed my eyes again, and the next minute there was a knock at the door, and it was Dr. Matt, Mattie's psychiatrist. Matt was perceptive enough not to bother us, but said hello to me and held my hand and then left. But you are getting the feeling for what napping is like here! There is no napping. I must stay alert to some extent to ensure that Mattie can nap.

When Mattie woke up, Kathleen came in to take his vitals and examine him. Kathleen could see Mattie was in no mood this morning, but she caught his attention because she told him she had something for him. Kathleen gave Mattie a copy of the music from the Curious George movie. Mattie liked the gift and we did listen to the CD several times today.

Mattie headed to the playroom, and he and I met up with a few volunteers and they attempted to help us with a puzzle Mattie found a day ago in the playroom. This is quite a puzzle. It is 600 pieces, and to me ALL the pieces look exactly alike. The puzzle actually makes the backdrop of a grandfather clock, and it comes with a real clock face you can pop into the puzzle. Mattie really wants to put this puzzle together, but when I tell you it is difficult that would be putting it lightly. We worked on the puzzle for a bit, and while we were working, Elizabeth (a social work intern) came up to visit Mattie. Elizabeth is the person who created the roach terrarium for Mattie as well as allowed Mattie to listen to ABBA on her computer yesterday. Well today, Elizabeth burned an ABBA CD for Mattie. He was THRILLED. We played the CD in the childlife playroom, and also later used it during his physical therapy session! I would say that Elizabeth is doing an excellent job connecting with Mattie. He now refers to Elizabeth as "my friend who likes cockroaches!"

Mattie's nurse, Kathleen, came into the playroom to show us the special tile she made out of clay in Mattie's honor. This tile will be part of a Lombardi Center art display, in which tiles from doctors, nurses, and patients are plastered to a large elephant structure. It is quite a talking piece, and tiles on the structure change periodically. Kathleen's tile truly touched me. Kathleen is also one of Mattie's nurses who attended the music fundraiser that Charlotte's brother, Tyler spearheaded for Mattie in Alexandria, VA. Can you see why we love these nurses? Sure it is their job to take care of Mattie, but the way in which they care for Mattie and us and their commitment to their patients goes beyond a job description. Enjoy looking at this beautiful tile, it is not a finished product yet because it still needs to be fired and glazed. Kathleen wrote on the tile, "I wish for a Mattie Miracle" Love, Kathleen." You will notice that Curious George is drawn on the tile! Mattie and Kathleen have a running joke about "George." As most of you know Dr. Bob named all of Mattie's limbs. Mattie's left leg is named "George." I say it is named George after Curious George. Mattie lands up using "George" to steal things out of Kathleen's pockets, mainly because he is curious. So it seems to me that Curious George depicted on this tile is fitting! You may recall that Kathleen is also the nurse who put gak in her pocket one day, in hopes that "George" would find it. In any case, I wanted to share this tile with you, and it is gestures like this that speak volumes about the importance of human connections in the recovery process.

Mattie and I had a special visitor today. A former student of mine and now a friend, Susan, came by to visit us. Susan brought us a wonderful lunch and gifts for Mattie. In fact, Mattie ate an entire roll of bread today with two large pads of butter. Mattie simply loves butter and I figure if this is what he will eat right now, I support that. But you should have seen his fingers and face, he was covered in butter. He was a tasty sight. Susan gave Mattie some wonderful bubble toys, such as a sword, and wand. Mattie covered the playroom in bubbles and everyone was having a good time trying to catch bubbles. Susan also gave Mattie a child sized hard hat. On the front of the hat it says "boss!" The perfect hat for Mattie. Susan gave Mattie some wonderful books and we look forward to reading them together. What kept Mattie engaged through lunch was a craft activity Susan brought called, Kirigami. It makes beautiful shapes out of paper. A volunteer today helped Mattie create some snowflakes. Check them out! Susan, Mattie liked your cupcakes too. They are delicious!

After lunch, Anna, Mattie's physical therapist, came to have a session with Mattie. Mattie was slow to start, but despite his protest, he did manage to get out of his wheelchair and do some walking with his posterior walker. Mattie did physical therapy to ABBA music as we walked around the hallway and of course he had his entourage with him. Or his cheering section! It is funny, do you think you can be so tired that you can go through the motions, observe what is going on around you and even participate in those activities, but just feel so dull and foggy? This is how I felt all day today!

After Mattie's therapy session, he had the special treat of designing a different kind of hat with Meg. I could describe it, but I think a picture speaks a thousand words!

Later this afternoon, Mattie and I had some time together to build a lego pirate set. We had a nice time building and talking. Laura, one of Linda's intern, also came in to join us and we talked about Mattie's hospital lego structure which is going on display this weekend on the first floor of the hospital. We are very excited to attend the art show on Saturday!

When Peter arrived at the hospital, we all had a lovely dinner together thanks to the Coker family. Thank you Carolyn for the wonderful messages of support today, they meant a great deal to me. Your dinner was very thoughtful and generous! Thank you.

After dinner, Peter watched the Curious George movie with Mattie and is now constructing an Alice and Wonderland puzzle that Susan brought Mattie. While they were busy doing this, I have been doing my second favorite pass time since Mattie has gotten sick, that's right, laundry!

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote to me today to let me know she is heading out of town to a conference and may not have access to the Internet. She wanted me to know that if I don't hear from her, she is still thinking of us. As many of you know by now, Charlie is a former student of mine, and is now my friend. She is a devoted blogger and I appreciate her support. Charlie wrote, "I think most of us would have been grouchy had we been up every few hours all night long. It is always amazing how much of an impact a good night's sleep or lack of it, affects a person and how they view the world. That said, it was especially gratifying to see that Mattie's group of supporters and friends were able to turn what could have been a very negative day into one that was very positive. Friendship, acceptance of who we are at our most basic level is such a tremendous gift. I give great credit to those who have been able to do this for Mattie especially Brandon who can reach out across the divide of age and interests and connect so well without making it about common illness. Seeing Mattie surrounded by friends and supporters and reading about his "traveling concert" certainly brings a smile to everyone's face. I hope this admission is as uneventful as it can possibly be."

Tuesday, March 24, 2009

Tuesday, March 24, 2009

Quote of the day:

"Life's not about waiting for the storms to pass...It's about learning to dance in the rain." ~Vivian Greene

It is amazing how a bad day can suddenly be transformed into a good day. What was the secret? Having a team of dynamic people to turn to, who will do just about anything to make your child smile. Sit back and listen to Mattie's fun day!

Mattie was up every two hours last night going to the bathroom, so it is no surprise that Mattie had trouble waking up. He finally woke up at 11am, and when he did he was in a tired, crabby, and grumpy mood. I tried to give him oatmeal this morning and he ate half of it, and then started crying and telling me his stomach hurt him. Trying to get Mattie to describe pain is NOT an easy process. So I couldn't tell if it was from nausea or what exactly was causing the pain. Needless to say, I am more certain than ever that the combination of receiving chemotherapy and being in the hospital can have a dramatic impact on Mattie's mood. This morning was a night and day difference from the boy I brought into the hospital on Monday!

At 11:30am, Mattie had a special visitor. His kindergarten teacher from St. Stephen's came by to work with him. Leslie has a way of making learning fun, so I am not sure Mattie realized he was working on anything per se. They read an Eric Carle book together entitled, "10 Little Rubber Ducks." Mattie liked it so much he asked to borrow it for the week. Leslie and Mattie also did a number game together, and then landed up working on some construction projects out of materials Leslie brought with her. I attribute Leslie's after school construction club to Mattie's fascination with building with boxes and other materials. All I know is this skill has been a life saver this year, because Mattie has turned to these skills and they have helped to occupy his time in a productive manner. Thank you Leslie for the lovely visit and for sharing your time with us, during your spring break!

Toward the end of Leslie's visit Mattie was lying down on the bed and again complaining about his stomach. As Leslie was saying good-bye, Jey (Mattie's "big brother") came to visit him and asked Mattie to sign his t-shirt. Jey was trying to create a t-shirt as a memorial of all the wonderful friends he has and had worked with. Mattie did not want to sign the shirt, so I did it for him! In addition, Jenny also came up to visit and encouraged Mattie to leave the room and visit the playroom. It was at that point that the day started to pick up! I certainly could have encouraged Mattie to visit the playroom, but it is different if it comes from Linda, Jenny, or Jessie. In the playroom, Mattie met up with Meg (one of Linda's interns), Mary (a wonderful volunteer), and Brandon. Yes Brandon! Brandon took the train from his home (which isn't around the corner) to the hospital to visit Mattie. Can you believe it?! Brandon spent the entire day with Mattie. What a special individual. Brandon told me that when Mattie first saw him today, Mattie did not recognize him. Why? Because Brandon has hair and looks great. He no longer looks like someone who is suffering from the effects of chemotherapy. As soon as Brandon started to talk, Mattie recognized that it was indeed his big buddy!

Mattie spent a good chunk of the afternoon in the playroom. Mattie built a boxed structure today. For some reason the box was designed to capture Linda. However, Linda was represented by a blue dinosaur in his play scheme. Mattie has made it clear that Linda is not really a dinosaur, but was using the dinosaur only as a representational version of Linda who can fit in a small box. I would safely say that if Mattie could have Linda by his side throughout the days at the hospital he would. Sometimes play mimics what we wish for in reality. At one point in the afternoon, Mattie headed back to his room, and with him was Brandon, Mary, Meg, and Elizabeth. Let me introduce you to Elizabeth. Elizabeth is a social work intern within the Lombardi Clinic. I have gotten to know Elizabeth over time, and I am impressed with her energy and her efforts to try to engage and play with Mattie. In fact, last Thursday, Elizabeth presented Mattie with two roaches that looked very much alive. She put these roaches in a glass jar and sat them on a small patch of AstroTurf. It is like having a terrarium, except there is no garden in the jar, only roaches. It is quite an addition to our home! Elizabeth and Mattie have a lot in common. So today, everyone was in our room, and Mattie started singing. He has his own made up song, but then it evolved into something familiar. He was signing an ABBA song. Mamma Mia to be exact. He also sang Dancing Queen. I snapped a picture of everyone in our small room as Mattie was creating his song. What impressed me about everyone in the room, is that they really went with the flow and encouraged Mattie to sing and express himself. Check out the troop!

The picture features in the back row Brandon, Mattie, Meg, Elizabeth (sitting on the floor in front), and Mary (in the chair). But the fun did not stop here! Elizabeth went to get her computer. When she came back into Mattie's room, she started to play ABBA music which she had loaded on her computer. Well one thing lead to another and before I knew it, we were in the hallways, walking all over the fifth floor singing ABBA songs. It is a sight that is hard to describe. Nurses, patients, and children were coming out to see us singing. I personally think that hearing roaming singers just made everyone happy, and if not, it at least made them smile. You couldn't help but smile when you saw Mattie's face beaming and singing. Linda and Jenny snapped some pictures of the entire troop!

Left: In the back row from left to right is Jenny (art therapist), Kathleen (Mattie's nurse), Vicki, Elizabeth (social work intern). Mary (volunteer) is in the middle and then in the front row is Meg, Mattie, and Brandon!

Right: In the back row is Mary, Kathleen, Vicki, and in the front is Meg, Mattie, Linda, and Brandon.

You can see Brandon and Meg dancing around to the ABBA music. What great sports they were! We did various rounds today. We even visited the transplant unit and saw Tricia, one of Mattie's favorite HEM/ONC nurses. Tricia came over and sang and danced with us. It was hard not to want to join in and have fun with this traveling show!

Mattie had a busy social day. After his traveling concert, he then came back to his room and played with Meg for a bit, and then a volunteer. It is now 8:30pm, and Mattie is eating up a storm. A first for the day! Ellen, our super night nurse, is in with us and Mattie is reliving his day for her.

Tonight it is a matter of continued hydration for Mattie, as well as his first administration of Leucovorin (Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells resulting in folic acid deficiency in the cells and causing their death. This action also affects normal cells which can cause significant side effects in the body, such as: low white, red and platelet blood cell counts, hair loss, mouth sores, difficulty swallowing, diarrhea, liver, lung, nerve and kidney damage. These complications and side effects of methotrexate can be either prevented or decreased by using Leucovorin, which provides a source of folic acid for the body's cells. Leucovorin is normally started 24 hours after methotrexate is given. This delay gives the methotrexate a chance to exert its anti cancer effects). We will await his 24 hour blood methotrexate level which will help determine how long Mattie will remain in the hospital this week.

I would like to thank the Doane family for a wonderful lunch today. I loved the BBQ chicken salad and Mattie devoured all the bread and butter. The chocolate was greatly appreciated. Thank you Mary for your lovely e-mail today. Your heartfelt sentiments meant a great deal to me. We also want to thank my Cousin Donna, who lives in Boston, for ordering us dinner tonight. Thank you Donna! Mattie ate up a storm. He loved the chicken and the corn on the cob!

I would like to share a message from my friend Charlie. Charlie wrote, "Given that you spent the day in the hospital, it was a pretty upbeat day overall. It is amazing how much easier two sets of hands seem to make a task like loading up the car; somehow it takes less than half the time it would for only one person. And having a smooth start to the day seems to help keep the rest of it from going off course I find. Sounds like this worked pretty well for you. I really enjoyed hearing about Mattie’s projects and his day. Maybe Mattie can teach a class in yoga for Wii once the treatment is completed. It sounds like he has mastered it quite well in a short period of time. Body control and image has such a big impact on our self esteem and self image that this really speaks positive volumes to me about Mattie’s future quality of life. A comment about the blog in general. I know so many people who read your blog virtually every day, even some who don’t know you or Mattie. You’ve been successful at reaching out and touching hearts across the US and around the world. Many of those people won’t ever post but somehow I know they will occasionally stop and be kinder to someone, say a prayer for another or otherwise do a mitzvah (good deed) for someone else that they might not have otherwise taken the time for because something in the blog touched them. May all good thoughts and deeds reverberate and multiply to create ripples of caring in the world."

In end tonight's blog with ABBA's Dancing Queen. The song we sang around the entire fifth floor of the hospital!

http://www.youtube.com/watch?v=K2k8RnZqVtk

Monday, March 23, 2009

Monday, March 23, 2009

Quote of the day: "When one begins to purposefully perform acts of kindness, thespirit changes and soon doing good deeds becomes a focal point for ourlife; doing good begins to be the same as feeling good. The periods ofemptiness when we search for the 'meaning of it all' begin to fill withacts of kindness." ~ Gary Ryan Blair

Peter helped me tremendously with Mattie this morning. He helped me get Mattie dressed, packed up hospital items, and helped me transition Mattie to the car (along with putting the wheelchair in the trunk). Having him around made the whole process go much smoother today. We checked in the clinic around 11am. Mattie was happy to show Jenny his lego creation of "what a hospital should be." Jenny really liked it and asked Mattie about all of its parts and features. Mattie was animated with Jenny, and this animation continued for the rest of the day! Mattie worked on a wonderful boxed structure with Jenny. He was creating a pizza parlor, however, it isn't like one I have ever seen. It has wonderful things hanging from the ceiling like butterflies. Mattie and Jenny made cute little chairs and tables for the people sitting in the restaurant. While we were in clinic, Mattie had a special visitor, Margaret. His first preschool teacher from Resurrection Children's Center. Margaret spent most of the day with us. She enjoyed seeing Mattie happy, talking, and engaged with others. It was a full day, Mattie even celebrated the birthday of two patients today! While Mattie was in clinic he had his vitals taken and his blood drawn to make sure his platelet count rose today so he would qualify for chemo!

I want you to get a feeling for timing here. We arrived in the clinic at 11am, we found out maybe by 1pm, that Mattie met his required counts. So then I went to the admission's office to do the same old admission process. Some things DON'T change! After the admission's process, I headed back to clinic, where Mattie was playing with Margaret and Jenny, and packed things up to head to the PICU. Mattie started his MTP-PE infusion at 4:30pm! This is five and a half hours after we arrived at the hospital! I did not give this time difference a second thought, because I have gotten used to it, and I have learned to just deal with it, what a sad commentary, no? But Margaret reflected upon the intense waiting time to me, and she said this must be hard on me to do with each admission. So true! In the beginning it drove me crazy, but I equate this to traveling to a foreign country. At first the different ways and customs catch you by surprise, but then you become acculturated to the new ways and you adapt to being in that Country. So in essence after eight months, I have adapted to the hospital culture and its slow turn around time.

Okay to really put timing in perspective, Mattie began methotrexate at 1opm tonight! Almost 12 hours after his admission.

Mattie's grandparents arrived back from their trip to South Carolina today, and before heading back to Boston, came by the hospital to spend a few hours with Mattie. Mattie enjoyed their visit, and also enjoyed introducing them to Margaret, Jenny, and Liza. They brought him back a pirate t-shirt that he thought was very neat!

Liza also visited with Mattie today. Liza is one of Mattie's favorite volunteers. After great discussion, this weekend, Peter and I decided to ask Liza whether she would like to work four hours for us every weekend. To my joy, Liza has agreed to do this! Peter and I both realize we need a few hours for ourselves each weekend. Liza brought a special book which she gave to Mattie today entitled, Mr. Popper's Penguins. Apparently this was one of Liza's favorite stories and she wanted to read it to Mattie. Margaret mentioned she loved this book too! The story helped to keep Mattie in the room long enough for Katie, Mattie's wonderful HEM/ONC nurse, to hook him up to his MTP-PE. Mattie was Mr. Social today. He spent a great deal of time in the hallway and childlife playroom. I think people were very surprised by Mattie's good mood. I am not sure how long it will last, but when he is like this it makes it easier for others to play and interact with him.

While Liza and Mattie's grandparents were visiting with Mattie, I went out into the hallway and had lunch with Margaret. Margaret brought me a lovely lunch and we had a nice time chatting and catching up with each other. I really appreciated the lunch and adult conversation. Thank you Margaret for spending the entire day at the hospital with us, and of course for all the goodies and activity books for Mattie. The watermelon was a hit!

Later this afternoon, I had a visit from Virginia B. We never met Virginia but she learned about Mattie through her neighborhood listserv. She is a faithful blog reader! In fact, Virginia told me that her son's school knows about Mattie too! Amazing. Virginia came to visit us and brought Mattie two wonderful gifts, a wind up roach and a lego fork and spoon. Wonderful! Mattie is excited about both additions. Thank you Virginia for your kindness and for opening up your heart to a six year old you never met before! It means a lot.

This afternoon, Mattie spent a great deal of time with volunteers, Meg (one of Linda's interns), and Linda of course. Mattie even had a race around the hallway on FOOT. He raced against Liza and Meg. Of course he won. They really hammed it up and he loved it. Mattie was introduced today to Wii Fit! Thank you Lana, you brought a whole new world to Mattie. Mattie has achieved the title, Yoga Master. You should see how well he balances. In fact, Mattie's nurse, Katie, came to find me because she was so impressed with Mattie. Katie even took pictures of Mattie in motion. I think she really captured the moment. Thank you Katie!

We want to thank the Pisano family for a wonderful dinner today. We so appreciate the support on our first night back in the hospital after two weeks!

I had the opportunity today to meet a young lady in her twenties who has osteosarcoma. She is back in because she has a reoccurrence. Mind you she only had one tumor during her first diagnosis. I think the fact that she had a reoccurrence is making me see that it is the luck of the draw who gets a reoccurrence and who doesn't. This young lady is so bright and has such a positive attitude, but you must marvel at these individuals who get a cancer reoccurrence, and where they find the inner peace and spirit to continue fighting are amazing. They give me pause, because I know how hard this is to deal with cancer the first time around, I can't imagine going through this treatment again.

So at 10pm, Mattie started his four hour infusion of the toxic highlighter yellow chemo, methotrexate. This is a particularly horrible process, because every four hours you have to collect urine for analysis. Should be a fun night. Especially since Mattie will have a whole lot of hydration post-infusion in order to try to flush this stuff from his system! After tonight, then it is a waiting game until his blood methotrexate level comes back at .1 or below.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Sunday's blog had a message--sometimes the best thing we can do, in the midst of pain, sadness,or situations we cannot control, is to do something for someone else. Vicki, you are a perfect example of that for me. A full fledged member of the "circles of care" community, you find time to give back. Many people don't realize how much small things mean to others, whether it is a newspaper to read about your favorite team or sharing bread so that someone else can feed the ducks. It all comes around to reaching out and showing love, care and compassion for others."

"The world is never saved in grand messianic gestures, but in the simple accumulation of gentle soft almost invisible everyday acts of compassion"......says Chris Abani, a storyteller of interpersonal humanity. He recalls the S. African phrase of ubuntu: the only way to be human is to reflect your humanity back on me.

Sunday, March 22, 2009

Sunday, March 22, 2009

Mattie Quote of the Day: While climbing up the stairs today, Mattie turns to Caroline Eaton (his piano teacher) and says: "You know, even though I've got bone cancer, I can do anything I try to do. I'm still strong!"

Quote of the day: "It is well to give when asked, but it is better to give unasked, through understanding." ~ Kahlil Gibran

Mattie woke up in a good mood, and played for several hours with Peter. They were busy constructing a Ferris wheel together, and I snapped a picture of the finished product. So the morning started off very busy here!

Mattie had a special visit today from Caroline Eaton, his piano teacher. Caroline spent close to two hours with Mattie. They played on the keyboard and Mattie also showed Caroline how he could walk up the stairs, or I should say his version for climbing up the stairs. While climbing Mattie stated to Caroline, "You know, I've got bone cancer. I can do anything I try to do. I'm still strong!" I could not get over what was reported to me. I thought that was absolutely fabulous, and a very good place for Mattie to be in since he will need to begin the tough process of learning to walk again! Thank you Caroline for capturing this sentiment for us, and for also bringing Mattie pumpkin bread! We so appreciate your generosity of your time and talents.

After Mattie's visit with Caroline, he then got to spend some time out on our deck in the sandbox. He has wanted to play in the sandbox all week, but I wouldn't allow him into the box with the old sand. Mattie was thrilled that Peter bought new sand yesterday, and is enjoying his time outside. It was a bit chilly for Mattie earlier in the day today, so Peter literally had a heater going right near the sandbox. I love the picture that Peter captured of the moment!

Mattie also had a good time playing with the easel he received yesterday from Tanja. Mattie requested a chair so he could sit while working at the easel, and we encouraged him to work without one. It forced him to stand on his feet while playing and drawing. I think there is a lot we can accomplish with this easel.

While Mattie and Peter spent the day together, I went to visit with Ann's parents at the assisted living center. Before visiting them I went out to get a couple of things that I thought they would like. Ann's dad is a Boston Red Sox fan, and really wanted a paper where he could read about the Sox. That may sound like a trivial request, but considering her parents relocated here from Boston about a year ago, it makes perfect sense that they miss aspects of home. I certainly know how it feels to relocate to a place, and I am sensitive to that feeling. I wasn't able to track down Boston papers, but did find several NY papers. Ann's dad was thrilled and read the papers cover to cover. It brings me great pleasure to know that my simple effort could bring someone happiness. I really relate to Ann's parents very much. We both live in a world in which we have little control over our lives, for them it is an assisted living community and for me, it is a PICU. We can't predict what will happen to us minute to minute, we can't decide how we will spend our day, we are isolated from things and people we have become accustomed to, and so forth. When I arrived at the center, Ann's parents were having lunch. So I sat down with them and chatted with them through lunch. I had fun learning how Ann's parents met each other and other fun stories. Ann's parents were funny today, they were upset with me at first that I brought them food and newspapers. But then I asked them what they would be doing if they were visiting me. They smiled and they said they would be doing the same thing, bringing me something. So with that I said that they shouldn't feel guilty, that bringing them something made me happy. I personally enjoyed watching Ann's mom eating the items I brought to her. I believe that Ann's parents have gotten comfortable with me the past two days, and it was hard to tell them that I wouldn't be visiting for a few days because Mattie was going into the hospital on Monday. They asked if I would call them, and I assured them I would. They both want an update on Mattie tomorrow. It is special to me to know that perhaps my presence made a difference for them.

When I arrived home this afternoon, Mattie requested to go out for a walk. So Peter and I took Mattie out for a stroll. We walked down to the Washington Mall, and saw some wonderful signs of spring. Peter snapped some pictures of flowers and then of Mattie and I in front of a cherry tree.

We continued walking to one of the tidal pools on the mall, where there were wonderful seagulls and ducks flying about. The day that I did not bring bread to feed the ducks, is the day of course that I needed bread. We experienced a random act of kindness because a man with his daughter were by the tidal pool with a whole loaf of sliced bread feeding the birds. They saw Mattie and the fact that we did not have any bread to engage the birds. The dad walked over to me and asked whether Mattie would like a stack of bread. It was very thoughtful and generous of this man to share his bread with us, and the little girl did not even complain about the fact that she was sharing her bread with Mattie. Mattie had a wonderful time feeding all the birds, as you can see!

After our walk, we met up with our neighbors and had a wonderful time catching up with each other. We also want to thank JP and JJ (our resident Jack Russell Terrier) for bringing over Mattie's favorite pizza and pasta today. That was very thoughtful of you.

We are all trying to get prepared for Mattie's hospital admission on Monday. I still have to pack and Peter and I also have to change Mattie's central line dressing tonight. One of our LEAST favorite activities! Please keep us in your thoughts and prayers as we head into another round of treatment, which means about two weeks in the hospital.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Saturday's blog demonstrated what I have always believed, when you do for others, you always end up giving a gift to yourself. That's why no matter what is happening in your life it is important to reach out to others whenever and wherever you can. In Judaism it is important that even if you are the receiver of charity, that you find a way to give to others in turn. I am so glad you were able to visit with Ann's parents on Saturday. It was a meaningful day for everyone and an opportunity to give back to someone who has given more than any of us could begin to quantify. It sounds like a day that helped you to rebuild a little of what gets lost in the hospital shuffle. The greatest gifts are always those of self, of time, of touch or with thought for the receiver. On Saturday you were able to give all four to Ann's parents and I thank you for sharing and reminding us of that.I was also happy to hear that Mattie is enjoying his time away from the hospital and "recharging" for the next round. Hopefully, he will weather this next one well and soon you will be only in the "check in" mode."

"Live life fully while you're here. Experience everything. Take care of yourself and your friends. Have fun, be crazy, be weird. Go out and screw up! You're going to anyway, so you might as well enjoy the process. Take the opportunity to learn from your mistakes: find the cause of your problem and eliminate it. Don't try to be perfect; just be an excellent example of being human." ~ Anthony Robbins