Saturday, January 24, 2009

Saturday, January 24, 2009

Quote of the day: "No one can sincerely try to help another without helping himself." ~ Charles Dudley Warner

Charlie wrote this to me today, "This quote touches upon the subject of gifts that we've been blogging about. Again and again you see how sometimes it is the smallest gift that means the most (fresh cheese, vanilla donuts, handmade cards from classmates of Mattie's, therapists who keep trying, etc). There is also the sense of well being and connection that happens when you find the right gift, the right words that are just what was needed, almost like finding that missing piece to the puzzle you've been working so hard to put together. It was a joy to see it come together for Mattie and see him back up and about with the walker, to see him make that connection from the support of a wheelchair to the support of the walker and then to give the gift of trust in return and give it a try. The best gifts are two ways and reinforce the connection between the giver and the receiver to lift them both to a new level. There is so much of that evident daily in your lives; thanks for sharing it, it is a gift to the rest of us."

Today was what I would call an amazing day. Why was it amazing? It was amazing, because I had the opportunity to witness true friendship, advocacy, and compassion. Though in many ways these are very adult concepts, I experienced them from the children I was surrounded by! A lot of what I witnessed today, was what I would call true beauty. Some find beauty in art, music, food, etc. I certainly appreciate all these things GREATLY! But when I can see true human connections, it makes my heart skip a beat. This indeed happened today.

I spent Friday night sleeping in Mattie's room as he was hooked up to an IV and I gave Peter a break since I think he was in worse shape than me. Mattie slept well and only woke two times during the night to use the bathroom. Although my sleep was disturbed, I was able to get back to sleep fairly easily. Although we were in bed after midnight, we all woke up late around 9:45am, which was a real treat. After I made breakfast for the three of us, Peter and I got ready for the day as Mattie had a very busy social calendar planned. Both Peter and I were able to get a lot of the "small" things done this morning while racing around. Mattie did very well entertaining himself, which seemed like a first, as he poured himself into building another version of the Creator Lego house set.

Mattie was invited to two birthday parties today, one for Charlotte, and the other party was for Nikki. We left the house around 12:30 to head to Charlotte's pool party. Mattie and I debated back and forth about what apparatus to take, the wheelchair or the walker. I was pushing hard for the walker! The less Mattie can rely on the wheelchair, the better, because it will encourage him to walk and use his leg. But he really wanted his wheelchair. Because I wanted this day to go well for him, I respected his decision. When we arrived at Charlotte's party, most of the kids were in the pool. Mattie was greeted by Ellen (Charlotte's mom), Ann, and Christine. That helped with the transition. This gave Peter a chance to slip away and run to Radio Shack to get the wiring needed to set up the lights that accompany Mattie's train set as well as make an unplanned stop at Target to purchase some Legos since our supply was running dangerously low. Not a good thing with Mattie stuck in the hospital for the next two weeks.

Mattie was excited to head down to the pool area and watch and interact with his friends from the pool deck. Many of Mattie's kindergarten classmates greeted him and tried to play around with him. Mattie was throwing pool toys in the pool, for the kids to dive for. Ann was also engaging Mattie and water was flying everywhere. Mattie loved getting wet and he truly looked like he was enjoying himself. During this portion of the party, I had an opportunity to talk to another SSSAS mom, Jackie, who has been supporting us with meals throughout this ordeal. But I have never met Jackie in person before. It was very special to chat with her, to hear her reaction to Mattie's situation and our blog. I of course got to reconnect with my friend Christine, which was special. Christine and I share a lot in common, and I still miss our playground times together.

Ellen worked very hard to make sure Mattie was involved and had a good time at the party. Charlotte (the birthday girl) wanted to sit next to Mattie at the birthday table, and Abigail (Ann's daughter) also wanted to sit next to Mattie. So Mattie was surrounded by his friends, who tried very hard to include him and meet his needs. After swimming, the kids played a lot of fun party games. I snapped some lovely pictures from Charlotte's party. I think the pictures show how happy Mattie was at the party! Look at that smile at the table! Mattie enjoyed the circle game the kids played. You can see Mattie talking with Abigail and Campbell in the circle as they are working on unwrapping the gift that was going around like a hot potato.

Left: Mattie, watching Charlotte blowing out her candles!

Right: Mattie and Charlotte!

Abigail, Mattie, and Charlotte! I am not sure who is cuter here!!!

After Charlotte's party, we headed off to Nikki's birthday party. Nikki was outside eagerly awaiting Mattie's arrival which was very sweet. Peter carried Mattie into the house and after a brief stay downstairs the party headed upstairs for the Pop Rock Star themed activities. There was costuming, make-up (Mattie passed on that), dance routines that Mattie participated in (thanks to Peter holding and helping to move Mattie), singing, a scavanger hunt, and a walk-down the runway ending with an individual pose and picture. It was a riot! The kids then headed downstairs for cake and punch. All in all, Mattie did extremely well given that he knew he couldn't do most of the jumping around, but it didn't really seem to bother him. Several of the girls, including Claire F. (Claire and Mattie were in the same kindergarten classroom last year) and in particular, Abigail stayed glued to Mattie throughout the entire party, lobbying for Mattie and alerting Peter when Mattie needed something. Abigail rarely left Mattie's side and sat out several of the activities just to sit by Mattie's side. I left Nikki's party early because I planned a meeting with a colleague who was visiting from out of town. But I witnessed enough to be thoroughly impressed with Abigail and Claire. Abigail told me that Ann (her mom) told her to stay with Mattie at the party. But we all know we can tell our children to do something, but it isn't always executed. Abigail many times during both parties today advocated for Mattie. Another child was asking why Mattie was so slow and before he could continue on with his commentary, Abigail set him straight. I am not sure you can teach this level of advocacy and empathy to a child. Though Abigail's compassion and sensitivity shouldn't be that surprising to me. She has an excellent role model, her mom, Ann. Abigail is the seven year old version of Ann. Talk about social learning theory in action, where what a parent models gets translated down into a child's behavior. Wow! Seeing how Mattie's friends embraced him today and were patient and inclusive made this day AMAZING! Again I see we adults have a lot to learn from children. We captured some of the highlights of the party.

Mattie --- dressed as a pop star! He was happy he did not have to wear a pink dress!

Mattie and Abigail smiled for the camera!

The girls dancing and singing! Mattie held his own considering he was the only boy at the party (other than Nikki's brother). Mattie felt special to be included.

The whole cast from the party!

After the party, Mattie and Peter headed home where they promptly started listening to 80's rock (they do this sometimes). While listening to music Mattie was Lego-ing and managing Peter's tasks and time to ensure he got the train lamps wired up properly. Hopefully we can take a picture of the finished product tomorrow! As Mattie and Peter were building at home, I went out to dinner with my colleague in Old Town, Alexandria. It was lovely to get out, see other people, and eat a dinner in peace. It is amazing to see people living their lives and enjoying a normal life, and the irony is they may not even know how lucky they are!

We want to thank Eva Katcher for a wonderful dinner tonight. I loved the chocolate mouse and Peter really enjoyed your salmon. As I am sign off for the evening, Mattie and Peter are watching the Bee Movie. Though this movie got panned by the critics, I just love it! Mattie is headed to have another fun day tomorrow, since we are taking him to see the movie "Hotel for Dogs" with a friend! It was a great saturday, filled with fun, smiles, and the opportunity to witness the power of friendship.

Friday, January 23, 2009

Friday, January 23, 2009




Quote of the day: "Every gift which is given, even though it maybe small, is in reality great, if it is given with affection." Pindar, Greek lyric poet 518-446


Charlie wrote this to me today, "Yesterday’s blog brought this to mind when you wrote about the gifts from Joy and how you gave one to one of your favorite nurses. I was struck by how much thought went into the selection of those pieces and then in turn how much went into deciding who to give the nursing piece. It was clear how right both decisions were-the one to give you the mother of sons’ statue and yours to give Tricia the nursing one. All of that reminded me of all the gifts of food, time, affection, etc given by the volunteers on Mattie’s behalf that I read about every day in the blog. I’ve heard you say over and over how much those mean to you and how much you appreciate the time and effort of the volunteers, staff, friends, and family who pitch in to help. Giving is a two way street and when the gift, whatever it might be is given from the heart, the giver receives as much joy as the person who receives it."



Before I tell you about our day, I imagine some of you may be wondering who is Charlie? As you know Charlie writes me thoughts almost each day. I have told you in previous blogs that she is a retired Lieutenant Colonel from the Air Force, a former radiology technician, and now a professional school counselor in Virginia. But how do I know Charlie? I know Charlie because she was one of my first students who I taught at the George Washington University's Alexandria, VA campus. I taught Charlie during my initial years of teaching, prior to getting my doctorate degree. The beauty of teaching at GW I have found is that I have had the opportunity to work closely with my students and have gotten to know them well. In fact, I learn a great deal from my students and they challenge me to continue growing, learning about the field, and developing more effective teaching strategies. Charlie was a student who I gained a lot from, and after we had classes together, we developed a friendship. Charlie's messages to me are a gift each day, which is why I share them with you and hope you enjoy them too.





Today's quote captures the essence of what I would like to reflect on this week. Gifts! Peter and I have and continue to receive many gifts from the heart. Each of our faithful blog readers and members of Team Mattie continue to provide us with gifts that are too priceless to measure. The gift of caring, time, compassion, and of course tangible gifts such as toys, goodies, cards, e-mails, phone calls, and food. I continue to be amazed by the outpouring of gifts we receive each day! In fact, despite being in one of the worst situations I could ever imagine, I find myself surrounded by a world I guess I was too closed off to experience before Mattie got sick. I am not sure what I was expecting to happen once Mattie developed cancer, maybe the world around me to shut down, off, and disappear (which has happened to most of the caregivers I have ever worked with or interviewed). But instead, quite the opposite is happening. I am connecting with more people now than ever before, and I find others too are connecting over this issue. That is profound to experience and observer.

What amazes me as well, is I have Mattie's nurses giving me/us gifts as well. Not only the gift of their compassion and understanding, but tangible gifts as well. Last night, Melba (one of Mattie's favorite night nurses) brought Mattie fresh mozzarella cheese. She knows how much he LOVES it, in fact she observed that I left the hospital the other night to track down fresh cheese on the Georgetown campus. I won't tell you the scene I made at the restaurant on campus to get just the fresh cheese. Melba heard this story, and took it upon herself to bring in a whole ball of fresh cheese for Mattie the next day. Totally unsolicited, but she got sheer joy over watching him eat it. Which gets to Charlie's message, that the gift giver gets just as much joy giving the gift as the person receiving it. Today, before we were discharged from the hospital, Miki (an outstanding Hem/Onc nurse) gave us a gift. She told me about the Japanese tradition called Hatsumode. Which in essence is the first shrine visit of the New Year in Japan. Many people visit on the first, second, or third day of the year as most are off work on those days. Generally, wishes for the new year are made during the visit. Miki did visit a shrine, and she prayed for courage, hope, recovery, and protection from illness. She brought me back a trinket that is symbolic of this. I was truly touched. She is providing us with outstanding service, and we should be giving her gifts, but instead she is bring me back a gift when she visited her family over the holidays. So this week to me is a week of reflecting on the beauty of gifts, friendship, and love. I have also observed that many of the nurses and staff are wearing the hope necklaces and Mattie wristbands we gave them for Christmas. Each time I see them wearing these items, I feel like it only emphasizes their commitment to seeing Mattie recover.

Peter and I packed up Mattie's room last night in preparation of being discharged this morning. Peter loaded up our car this morning before he left the hospital and he even bought Mattie and I breakfast to start off our long day on the right note. Peter was willing to go to work a little later this morning to take us home, but I was determined not to miss Mattie's 10am physical therapy appointment. Peter then offered to pick us up at lunch time, but I figured that it would be hard for him to leave midday to come to Georgetown. The packing up and moving out process is never easy, but it makes it easier to do it with Peter since he takes on the hard part of carrying all the bag and boxes to the car. When he takes these things ahead of time, it lightens my load, so that I only have to worry about Mattie, the wheelchair, and a few bags.

This morning started out challenging and ended on an amazing note. I will describe it, but I want the picture to speak for itself first! The picture shows Mattie walking normally, straight on, not doing his side ways crab shuffle. You can see Anna (Mattie's PT) making the victory sign in the picture, because after trying to coax him to do this, he finally tried it!

Anna brought to the PICU two different walkers today. She told Mattie he got to test drive them to see which one worked better for him. At first he seemed disinterested or scared in pursuing therapy today. So instead he buried himself in building with knex. Anna and Linda continued to encourage Mattie to try to stand and use the walker. They designed clever play schemes into the whole therapy session today, to try to encourage him to engage and move his body. At one point I told Mattie straight on that he had to listen to Anna. That if he did not start using his knee and straightening his leg, that Dr. Bob was going to put a cast on his leg. Yes it was a threat (a real threat, I did not make it up!), but none the less he had to understand that he has a choice. The choice is either to work slowly on moving and working with Anna, or take a step backwards and get another leg cast.

Mattie tried the standard walker. The walker that stands in front of the patient. But that did not work for Mattie. Anna explained the problem to me. Mattie's right knee is buckling under him because he hasn't used or exercised it much after surgery. So he needs to strengthen it, but he is in essence scared to do this. Because he has a weak right knee, he is unable to balance and put pressure on that right foot, in order for him to lift his left foot off the floor to take a step. The left foot is basically planted and sucked to the ground. Which is what leads to his invention of the sideways crab crawl. I felt like today I had a better understanding of the problem. Anna then gave Mattie the opportunity to use a posterior walker. Linda and Anna told him this is just like his wheelchair, supporting him from behind. I don't know, but something clicked. The next thing I knew he was walking straight. His left leg was clopping along, but it was such an improvement over the crab shuffle. I couldn't believe my eyes. We were all so excited for him, which inspired him more. He then started to move faster. He caught the attention of almost everyone in the PICU.... nurses, doctors, and residents! I wish I took a picture of the crowd, but I was too busy watching Mattie. Mattie made great progress with Anna the last two days, and it is my hope that he will build upon this next week in the hospital. I find that there are some things Mattie allows me to help him with, but his physical rehabilitation is not one of them. I don't take it personally, since I got over this insecurity early in his life when I had to turn to speech therapists and Kathie (his OT) for help. We just can't be everything to our children, despite how much we would like to try.

At noon today, Linda helped Mattie I downstairs to the ER entrance where we met Liza May (a SSSAS upper school mom). Liza was nice enough to volunteer to pick us up and take us home today. This was wonderful because Mattie really wanted to leave right after PT. Liza got us safely home and helped us out. Thanks Liza!

We had a quiet afternoon, of playing with a large box of knex that Linda gave Mattie. We also played trains and had a visit from JJ (our resident Jack Russell Terrier). When Peter came home tonight, he helped bring up items from our car for us to unpack from the hospital. But Mattie was very focused on showing Peter his new walking abilities. Peter had heard about this earlier in the day when we talked by phone, but Mattie wanted to surprise his dad, and Peter hammed it up! When Peter walked in the door tonight, he literally bumped into the walker and asked what this was. He joked that it was a good place to hang his jacket, and Mattie laughed.

We had a wonderful homecooked meal tonight thanks to the Kathy Brown and her family (a RCC mom and her family). Kathy made us homemade pumpkin soup, which is one of my favorites. Mattie ate pumpkin soup and loved it, he ate Kathy's homemade chicken, and a plate of cheese. Now he is eating ice cream. So Mattie had a good dinner. Thank you Kathy for such a nice meal and for the brownies as well. I was disappointed to hear that the Dairy Godmother is on vacation for a month, because Mattie still talks about the amazing custard you brought him last time!

As I write the blog tonight, Peter and Mattie are watching the movie, Cars together. This is one of their favorite movies that they like to watch. In fact, they both can quote parts of the movie. It is a riot to hear. Mattie has a full social weekend, with two birthday parties to attend tomorrow. It is so nice that Mattie continues to be invited to parties, and included in his former life outside the hospital. Of course as a parent of a child with cancer, we would like to shelter Mattie from disappointment because you just never know how Mattie will react around his friends. But Peter and I will be there to support him, and help him to embrace these good times. As I sign off for the evening, Peter and I want to thank Joan Holden (SSSAS Head of School) for calling us today and for her continued support, energy, and dedication to our family. We are indeed blessed for all these gifts!

January 22, 2009

Thursday, January 22, 2009

Quote of the day:

"That some good can be derived from every event is a better proposition than that everything happens for the best, which it assuredly does not." ~ James K. Feibleman

Based on today's quote, Charlie wrote me the following. "Somehow this seems apt. You always seem to find something good in the situation no matter how bad it is. This is a great survival strategy and a wonderful life lesson for Mattie. As you discovered, we teach our children and create memories for them even when we think they are not paying attention. So it is with this and although often Mattie doesn't seem to "get" what you are doing for him, in retrospect he will and he will remember the lesson of fight for what's important, love with everything you have and celebrate life to the best of your ability."

Wednesday night was eventful, but not because of Mattie. Mattie had sedation wednesday afternoon and therefore he took a long nap, so he wasn't able to go to bed until 2:30am. So I stayed up with him. For the most part the PICU was quiet, until 1am. At 1am, a could hear that the room next door to us was being cleaned and furniture was being moved so that the hospital could prepare for a patient to occupy the room. Okay that sound was bad enough, but what followed next I am still processing. At around 1:45am, I could hear a family coming in. The mother was hysterical. She was crying and was uncontrollable. She was in the hallway and then in her child's room, but I could hear her quite well regardless of where she was. I actually found her crying and the intensity of it intimidating, mostly because I too live in a precarious position with Mattie. However, her crying never got better. I am not sure why Mattie did not ask me about this, but he was focused on his movie (thankfully!) and I kept turning up the volume of our sound machine. I am just thankful that this crying did not disturb him. I tried not to look bothered by what I was hearing, and therefore, I think this made a difference for him. We are used to hearing crying in the PICU because of pain and the other issues around us, but last night's crying was a type of crying I have yet to hear before in this unit. When I woke up this morning to take a shower, I did not hear any noise next door. Because our room shares a shower with that room, I figured I would be hearing something while in the shower. But I heard nothing. Later in the morning when I went out in the hallway, I noticed that there was no one in that room next to us. Being optimistic, I figured that either the family was discharged or maybe they were moved. When I asked Tracey, our night nurse, about this tonight, she told me she couldn't comment. Which reading between the lines means the child died last night. I think illness is hard enough to come to terms with when you are in a pediatric unit, but now we are also dealing with death. I think what I found particularly disturbing about last night, is I felt like I was intruding (though certainly not intentionally) on this family's private time to deal with this shock. So in essence Peter and I don't only have to live with the smells and daily nuances of cancer, but we also have to face the reality of death. Not an easy topic to address in our society in general, but most definitely a very sensitive issue for us based on Mattie's situation.

Mattie woke up in a happy mood today. Meg (Linda's intern) came in to visit him, along with Sally the story lady. Mattie showed these ladies the quicksand he made out of cornstarch and his other science experiments. Sally came dressed today in jungle/hunting attire, in order to set the mood for her two stories about bears. One of the stories was entitled, "Going on a bear hunt." The ironic part is Mattie remembered this story from his days in the pretend room at RCC. Mattie even remembered the song that accompanied the story line. It was wonderful that Mattie allowed Sally into his room today, because he has literally thrown her out of the room for the past two months. Today he was animated and truly enjoyed the stories and his time with Sally and Meg. Sally even shared her story about how she came face to face with a bear when she visited Glacier National Park. Mattie was fascinated by this story and then created his own story about how he too had seen a bear's house (which was just a story of course!).

Later in the day, Ann came to visit Mattie. Ann came with a basket full of tricks and ALL sorts of foods to eat. Mattie did devour a donut (so that one donut a day principle is still in effect), but refused to eat anything else. Mattie and Ann did some wonderful projects together such as creating a spongy octopus, watching crystals grow, and playing with parachutes attached to little action figures. Mattie even showed Ann and I how his new money magic trick works. Through all the play that Ann does with Mattie, she tries to get him to move his arms and legs, so there is a definite strategy underlying the play which I am not sure Mattie is aware of. He had a great time playing and when I came back in the room Mattie was animated. Ann gave me time today to have lunch outside of the room. I really appreciated the wonderful lunch and pastries, and time away. These moments are true gifts. Ann also dropped off a gift for me from a former student. Thank you Pam for the beautiful sweater/scarf. I will be able to use this a lot during these cold days. Thank you also for the pumpkin breads and lovely angel. That was so thoughtful of you to think of us.

While Ann was visiting us, we also had a visit from Joy. Joy is a friend and former RCC mom as well. Joy brought us a wonderful dinner tonight. One of the dishes was pasta with olives, since clearly our readers know I am an olive fan, you can imagine how much I enjoyed that. Thank you Joy for the wonderful gifts you brought Mattie. In particular, Joy brought us two beautiful pieces of art. One piece was for a mother of a boy and the other piece was a gift for a nurse. The one I kept literally said, "....there's a special place in heaven for the mother of boys." Indeed! The other art piece Joy said we should give to a favorite nurse. So tonight we gave this piece to Tricia. Tricia has been one of the nurses who just rises to the occasion, and has been with me every step of the way with Mattie's treatment. She has advocated for us with doctors on many occasions and has a wonderful rapport with Mattie. I couldn't think of a more deserving person for this lovely gift. Tricia was so touched by this gift she cried. Joy, what a fabulous idea! Thank you for bringing this to me today. I will treasure the piece about mother's of sons.

After Ann and Joy left, Mattie was headed to the x-ray room to have x-rays done of all four of his operated parts. Linda and Meg came with me, which helped tremendously. Linda's support is truly valued, during all these difficult moments. Mattie started off the x-rays doing well, but by the mid point, he was getting impatient and also was developing pain from being asked to hold a certain position with one of his operated parts. Mattie's leg is very sensitive today after Dr. Bob worked on Mattie's knee yesterday. So Mattie is hyper sensitive. When I spoke with the x-ray tech she told me the order said that she needed to x-ray Mattie's left leg. I then asked why? Nothing is wrong with Mattie's left leg, it is the right leg that needs to be x-rayed. So Linda jumped into action, but it was hard to get the residents to address this ordering issue. So right in the middle of the x-ray room, I halted the process and paged Dr. Bob. Okay, do you want to hear a funny story? Well we have at least three Bob's in our life right now. Bob Henshaw, Bob Glennon, and Bob Weiman. The number I first called wasn't Dr. Bob, but I did not know this! I pressed the wrong Bob by mistake. So for the first two minutes of my conversation on the phone I am asking a Bob about x-rays and what I should do, but it wasn't Dr. Bob I was talking to, I was talking to Bob Weiman (Mattie's head of school). It really was too funny and Bob W. was such a good sport about this! It just had to make me laugh. This is how disoriented I was. I finally paged the correct Bob. Bob called me back within minutes and he agreed the order was written incorrectly by a resident. I felt the need to check with Bob because he may have had a plausible explanation for x-raying the other leg that I may not have been privy to. So we did get the correct parts scanned today, thankfully! But x-raying was painful, and Mattie landed up hysterical by the time the process was done.

After the x-rays, Mattie came back to his room, and Linda invited him into the playroom. While I was cleaning up Mattie's room, I wasn't aware of the fact that Mattie had all his girlfriends with him. Mattie was designing a beautiful eagle model with Linda, Jenny, and Jessie. They brought Mattie back to the room and showed me the model. Mattie is quite proud of his artistic endeavors, that he asked all his "ladies" to stand with his art work, so he could take a picture of us! Here is the picture he captured!

Pictured clockwise: Vicki, Anna (Mattie's PT), Linda, Jessie, and Jenny! In the picture are all of Mattie's wooden models that he has created this week such as a shark, a peacock, an the eagle.

Jenny and Jessie were telling me that they could see Mattie was visibly upset when he came back from the x-rays today, but that he pulled out of it quickly. He was happy to work on a project. Jenny told me that while creating the eagle, Mattie was trying to stick a pipe into the base holding up the eagle. He was having a hard time getting it to go through the material. He then said he wished he had an x-ray machine so he could see what was actually inside the base that the eagle was attached to. Jenny and Jessie felt that was a profound comment, because first Mattie understood what an x-ray machine actually does, and second despite being upset about the x-ray machine and what he just experienced today, he moved passed that to understand how it could be used in his daily life.

I had the opportunity to talk with Jenny and Jessie today about a project I would like to work on. My former student, Pam, sent Mattie a card in the mail this week. When we opened the card today, I happened to glance at the postage stamp. I do that often, since I find it interesting to see what stamps people select and place on a card. Stamps to me are like mini pieces of art, and by picking a certain stamp, to me it says something about the person sending the card. In any case, Pam, created her own personalized postage stamp. I was intrigued by this, and my wheels started turning. I want to create an osteosarcoma stamp. I realize this may not be a US stamp recognized by the US postmaster general per se, but why not create our own stamp through stamps.com to publicize this horrific disease? I asked Jessie and Jenny to work with me on this since they are both artistically strong! I am excited by the possibilities of this idea and I think they are too.

Anna had a very successful physical therapy session with Mattie. Junko's air balloons that she gave Mattie yesterday played a big role in the therapy session. Mattie had Linda inflating balloons in the hallway, and he had to use his arms to send the balloons crashing into us. In addition, he walked to a few balloons that fell on the floor to pick them up. This session lasted for over an hour. During that time Anna helped stretch out Mattie's leg, and got him to do some exercises in a very creative manner. Anna and I consulted this afternoon with Dr. Bob in order to get his approval to try to use some walking devises tomorrow that will help brace his arms so he can focus on his legs. So he has another big PT day tomorrow.

Mattie received a lot of wonderful mail this week. We want to thank Brian Boru (our feline friend) for all the wonderful creepy crawling creatures made of our rubber. Mattie loves them!We want to thank my former student, Mary for the wonderful card and gift card to Target that she sent Mattie. Target is one of Mattie's favorite stores to visit. We also want to thank Susan DeLaurentis (Mattie's Director of School Counseling at SSSAS) for the fun musical cards she sent to both Mattie and I. Mattie's card had coachroaches on the front, so you can imagine what kind of hit this was. My card played a Dionne Warwick song, which I absolutely loved. Thanks Susan.

As I finish writing this blog tonight, Mattie has just completed his second dosage of MTP-PE for the week. So far he is holding his own, but he is very tired and ranges from being awake to completely sleeping tonight. It is our hope that we will be discharged from the hospital tomorrow. Mattie's methotrexate level today was .23. Quite close to .10. I imagine we will go home in the afternoon tomorrow, since Mattie has PT in the morning and the discharge process takes a while. As I sign off for the evening, I have a full evening of packing up Mattie's room ahead of me. I have to pack tonight and load things into Peter's car, so that all I have to worry about tomorrow when Peter is at work are Mattie, the wheelchair, and a light bag or two.

Wednesday, January 21, 2009

Wednesday, January 21, 2009

Tuesday night went more smoothly than Monday. We had Melba, who is a night nurse that truly understands and appreciates Mattie. Mattie needs positive feedback more now than ever before. Melba loves how Mattie likes doing puzzles and she even took some time last night to try to complete a puzzle with Mattie. This is clearly not in any Hem/Onc nurse job description, but it is this human and compassionate nature of Mattie's nurses at Georegetown that make a long night bearable!

Mattie's pH in his urine has been on the acidic side all day today. So at one point today they gave Mattie a bolus of sodium bicarbonate in addition to the bicarbonate in his regular IV drip. Apparently the pH of the urine has to be between 7-8, in order to process methotrexate from the body effectively. I tell you, I learn something with each hospital stay. I learned last night after I wrote the blog that Mattie would have to be NPO (nothing by mouth, no food or water) starting at 10am today. So basically he went throughout the day without any food. He needed to do this since he was going to receive sedation so that Dr. Bob could derotate the prosthetic in Mattie's left arm. Well trying to keep Mattie occupied today and not focusing on food and water was nearly impossible at times.

Mattie and I had quite an active day. We did five 100 piece puzzles. I captured Mattie on camera after he finished two of the puzzles Meg (Linda's intern) gave Mattie. Mattie really loved the gingerbread house puzzle, and it apparently jogged his memory. He told Linda about the time in preschool that we brought in homemade gingerbread houses for the children to decorate, and in his kindergarten classroom when we brought in huge gingerbread men for his classmates to decorate. Funny how such a puzzle could trigger such fond memories. The irony is at the time I did these activities in Mattie's classrooms, I wanted to do something special for Mattie and the other children, but now I see these activities mean so much more. We as parents have the gift of being able to create life long memories for our children. Memories that they can pull from during difficult times. We live busy lives, and sometimes we ask ourselves why on earth are we taking on ONE more project or task? Well the answer is simple. We do it for moments like this today, when you hear your child tell you that he/she enjoyed what you did, that it made a difference, and that this activity made your child happy! With children sometimes the appreciation is delayed in coming, but I have no doubt all our efforts get filed in their mental databases.

Linda brought Mattie some fun hands on science experiments today where we learned about polymers and about non-Newtonian fluids (fluid whose viscosity varies depending upon the applied stress). Mattie had a ball making a gloopy mixture out of cornstarch and water, and soaking all sorts of things in water to see what kinds of reactions they produced. Below are some of his experiments in progress. Now if you are familiar with the size of our hospital room then you know we are not dealing with a lot of space, and today Mattie filled it up royally!

Mattie's nurse today was Tricia. Tricia is one of Mattie's favorites. She is another nurse that knows how to relate to Mattie. She was telling us about her teenagers who like to play with their DS Nintendo player. This inspired Mattie. For the first time in ages, he asked to play with his DS. So he occupied himself for a little while and we played all sorts of games. But one thing is for sure I need a DS tutorial big time. I can't figure out what on earth I am doing. Mattie got frustrated with my inabilities today.

Earlier today, Mattie did a magic show in his room for Tricia and Meg (Linda's intern). Mattie was very proud of himself, and he was very eager to show Tricia and Meg the secrets behind the magic. I told Mattie he could do this, but if he was really performing that he should keep his audience guessing. Mattie was practicing his magic skills because Bob Weiman (SSSAS' Head of the Lower School) was going to be visiting Mattie later in the day. Bob has initiated the idea of performing a magic show with Mattie at the hospital. I think this activity will be very good for Mattie for so many reasons. Any activity that is mentally stimulating and encourages Mattie to interact with others, and develop confidence in his skills is a very productive and worthwhile activity in my book. I also think Bob is an excellent mentor and role model for Mattie.

This afternoon, Mattie had just about had it with being confined to his room. So when Linda came to visit, we decided to take Mattie out to the hallway and wait for Bob Weiman's arrival. At which point, some folks from the Lombardi Clinic came up to visit Mattie and to see him performing some magic tricks. Within this group of people there was also a little boy around Mattie's age who also had come upstairs to see what Mattie was doing. This should be great in theory, right? The little boy noticed that Mattie was building a model out of wood (one of the many models that Linda got for Mattie) and he wanted to do one too. So he helped himself to a model. Mind you there were many, a whole stack of models. When Mattie saw that this little boy took a model from what he deemed his pile of models, this started to get Mattie very upset. But what caused Mattie to completely shut down, was he noticed that Linda, Jenny, Jessie, and Tricia were spending time talking with the other little boy. Naturally of course, this is their job, they are there for all the children. Mattie literally got jealous and very territorial. He shut down and cried and Tricia and Linda brought Mattie back to his room, because he then decided he did not want to perform magic this afternoon after all. Mind you Bob came all the way from school to work with Mattie. I am coming to terms with all this guilt I am feeling over inconveniencing others.

In addition to our visit from Bob, Junko (a friend and SSSAS mom) came by to visit us. Junko saw this whole incident transpire, and like Bob, she too felt like I needed to let it go. That I can't control an uncontrollable situation, and people know that when they visit Mattie that he may not be in a good place to receive them. Junko and her family are incredibly supportive of Peter and I. Junko brought me lunch from a restaurant she has introduced me to that I love. I love it because things just seem so fresh with a lot of vegetables. I was starving today because while Mattie was fasting so was I. It wouldn't be right to eat and drink in front of Mattie, especially since he was literally craving food all day. But as soon as Mattie gave me a moment this afternoon, I couldn't eat fast enough. Thank you Junko for a fabulous lunch. Mattie loved all the snacks and he ate the entire macaroni and cheese you brought him. That was a hit! Also thank you for all the gifts you brought Mattie, I know he will enjoy them. If all of this wasn't enough, Junko also gave me a back and neck massage. This is another one of Junko's skills.

Once Mattie reset this afternoon, Bob was able to go back to Mattie's room and show him a new magic trick. It involved making money! Sounds like a great trick to me. I am so happy it turned out to be a positive afternoon after all, and Bob and Mattie are planning their next practice session or two before Mattie performs his tricks for a few people. Thanks Bob for coming today and for being so generous with your time and skills.

At around 4pm today, Dr. Bob came to perform his medical magic. Mattie was sedated with propofol and was knocked out in seconds. I waited outside of Mattie's room while Bob rotated Mattie's prosthetic back in place. Bob would have allowed me in the room, but the hospital staff preferred me out of the room. I was fine with this decision because Bob was in the room with Mattie. Bob literally was able to get Mattie's arm back into place within seconds, and he also worked on straightening out Mattie's knee. Bob explained to me that Mattie keeps his right knee slightly bent all of the time. So he rarely straightens his knee, which one would need to do in order to walk. So I feel like I am on a mission now. I have got to get Mattie to straighten that leg, and also I have got to get him to start walking normally, rather than shuffling side ways. I know doctors feel that Mattie's recovery will come once chemo is done, but in my mind, it must start now. We have a lot of barriers to break through in order to be able to work up to doing physical therapy aggressively.

It was a very full day and tonight at 8pm, I had a board conference call to run. Where I found the strength to do this is so beyond me. I guess you just rise to the occasion sometimes. I am fortunate that Linda found me a quiet place to conduct the conference call, and for that I am grateful. Trying to have a conference call in the family lounge is a joke because you have to deal with people watching TV, talking, the microwave, and the washer and dryer. Finding a quiet space is a rare commodity in a hospital.

We want to thank the Arends family for the wonderful dinner and desserts. They were enjoyed by all. Thank you for your support. I am signing off for the night. Mattie is still up and watching the movie, "Bolt" that Linda brought for Mattie to watch tonight. Linda set up a special movie night with a big projector and screen for Mattie. Thank you Linda! Mattie is complaining of some pain in his arm, but so far tylenol is doing the trick. Let's hope for a good night. His methotrexate level was 1128 on tuesday, and today it jumped down to 3.52. We are getting closer to our .10 methotrexate blood level target!

Inauguration Day

Tuesday, January 20, 2009


Quote of the day (Thanks Charlie!): "Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they're always there." ~ Norman Vincent Peale


Monday night's chemo started at 11. We were assigned a traveling nurse last night, not one of our usual Hem/Onc nurses. Not that she wasn't a qualified nurse, she was, but Peter and I find a level of comfort in working with nurses who know us and Mattie's history. It just makes the night go smoother. So I reminded the nursing staff that I spoke with the nursing manager a few weeks ago who assured me that we would only be assigned the full time staff. In order to accomodate this request, we were still given the traveling nurse, but Melba shadowed her. Melba is one of our favorite night nurses, and she knows Mattie very well and she even knows the names of Mattie's legs (Steve and George) and arms (Sam and Harold).

It has been three weeks since we had to pull these long chemo nights, so last night was hard. Do you remember how you felt when pulling a couple of all nighters studying or caring for a newborn at night? Well this is how we felt today! Wiped out. The methotrexate infusion started at 11pm and ended at 3am. While the infusion was taking place and most definitely throughout the post infusion, Mattie was getting hydrated with IV fluids. Literally Mattie was up every hour last night going to the bathroom. It was stressful, because you want to capture this urine before it goes everywhere. The highlighter yellow color of Mattie's urine is a constant reminder that the chemo comes out in the urine. Certainly we don't want the chemo touching Mattie's skin or ours for that matter. In fact, Melba last night gave us masks to wear when we disposed the urine in the toilet. She said that the fumes from the urine could be toxic to us. Great, no?! I now try to take whatever precautions the nurses tell me about since my finger was burned last time when I was disposing Mattie's urine (the chemo went right through the glove I was wearing). So we were jumping up every hour collecting urine and every four hours we had to put the urine in collection cups for analysis. So it was impossible to rest soundly. The urine analysis lets the medical staff assess how well Mattie's kidney's are processing the chemo. Until Mattie's methotrexate level is .10 in his blood, he will be required to remain in the hospital and have his urine collected every four hours. His methotrexate level was 1128 today, so we have a way to go! I wonder why we are so tired, but seeing last night in motion explained a lot. In fact, I give Peter a gold star, since he did most of the jumping up and down.

We all attempted to sleep later this morning, but the hospital has its own schedule and by 8am, everything was hopping and people were jumping in and out of the room. So we were up! Mattie had a visit today from Jessie (one of his art therapists). Jessie invited him down to the clinic this afternoon.

Mattie did visit Jessie today and they created another wonderful cardboard box structure, with some creative model magic things inside. Jessie and Mattie had a good time playing together and Mattie even ate a peanut butter and jelly sandwich while in the clinic. But then he was getting tired and was also sick to his stomach. When we got back to his room, we called Sarah Marshall, Mattie's nurse, and she administered him Vistaril (an antihistamine - did you know that antihistamines are used as anti-emetic? I learned something!). Mattie took about a two hour nap this afternoon. Periodically throughout the day we tuned into inaugural activites and the swearing in ceremony. We wanted Mattie to see what was happening today in our Nation's history. Mattie was particularly fascinated with the televised activities because he could identify the Capitol, the Lincoln Memorial, and even Times Square in New York.

Mattie was given MTP-PE last night before methotrexate. I think the combination has worn Mattie out a bit. As we head into wednesday, I am trying to prepare Mattie for the fact that Peter is going back to work on wednesday. I know Mattie has truly enjoyed this bonding time with Peter. On wednesday afternoon, Mattie will also be visited by Dr. Bob. Bob is coming to derotate Mattie's left arm prosthetic back into place. You may recall that Mattie's left arm twisted a funny way in New York, and his arm looks like the letter L. I am happy Bob will be addressing this tomorrow and Mattie will regain the function in his left arm again.

We want to thank my cousin Donna in Boston who sent us dinner tonight. I am not sure how Donna knew about Listrani's in Georgetown, but it is one of the restaurants we occasionally order late night foods for Mattie. Thank you Donna for the great salads and of course the wonderful chocolate! As I sign off for tonight, wish us strength to get through this methotrexate week, and if that isn't bad enough, we have another methotrexate week coming up on monday.

Monday, January 19, 2009

Monday, January 19, 2009

Charlie wrote this to me today, "I see this constantly in your blog. Thank goodness for Ann and the rest of the Mattie volunteers who are there to fill in the gaps. There is simply not enough time in the day or energy outside of a nuclear reactor for dealing with all the stuff you have to cope with. This is especially true when Mattie goes inpatient. In the military, whenever we think of something that would be really helpful, we say, "they should have issued you one." Well, if you have cancer and you don't have a network, they need to issue you one! Fortunately, you have parents, SSSAS, RCC, your GWU family, and Pete's co-workers who all have stepped into the breech. I have no idea how all this could be coped with otherwise as you and Pete are putting forth superhuman efforts on Mattie's behalf!" Which leads in beautifully to the quote of the day......................

Quote of the day: Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one. ~ Jane Howard

Despite getting up early today, we still couldn't get out of the house before 10:30am. Trying to pack things up, put our home in order before leaving, and getting Mattie physically ready just took time. We received an e-mail from Dr. Toretsky letting us know that everything was all set for Mattie's MTP-PE infusion today. When we walked into the hospital, to the fifth floor PICU, it was like going home again. We were greeted by all the people who know us. Of course there are components of the hospital that are like a ghost town since today is a holiday and also it is inauguration week. But what a night and day difference between the factory and impersonal environment of Sloan Kettering and Georgetown. Sloan may have the aesthetics and the more impressive facility, but in the grand scheme of things, who cares?! This is not what helps you through this nightmare and the day to day stresses. It is the quality and caliber of the people. In that department Sloan can learn a lot from Georgetown.

Mattie, Peter, and I spoke with Dr. Gonzalez about our Sloan trip and how Mattie reacted to MTP-PE. Dr. Gonzalez had us sign an informed consent form for MTP-PE and she also asked that Mattie sign a MTP-PE assent form (an informed consent form for a minor). I think that was a great idea, because this helped Mattie take responsibility and power over his treatment. At first he put up a fuss and did not want to sign it. He wanted Peter to sign it for him, but then I explained that only big boys get to sign such a form and I told him that signing the form meant that he was giving permission to the medical staff to give him medicine to fight the bone bugs. He liked that explanation and reached for the pen and signed the document. He had an audience while signing his form and we all congratulated him.... Laura (Linda's childlife intern), Swatii (Hem/Onc resident), Dr. Gonzalez (Hem/Onc attending), Dr. Natarajan (PICU attending), and a hospital volunteer.

Mattie was active today. Linda had left a care package of activities for Mattie to do. Mattie built a battery powered car. He literally did it himself today while Peter and I were unpacking his room. The car works very well, and Mattie was sending the car into the hallway and it caught the attention of a lot of people. Mattie was very animated. Mattie came to the hospital and was talking to people, but I have observed just seven hours back into this environment, he retreated back to just wanting to interact with Peter and I. This afternoon, Dr. Toretsky came to visit us and to check how things went in NY and to discuss the plan for the week. It was very nice of him to stop by.

So we arrived at the hospital at around 11am, and it is now 6pm, and we have yet to start MTP-PE or methotrexate. So it will be a long night here. At Sloan Kettering they post-medicated Mattie after MTP-PE administration with Demerol, but Georgetown wants to be more conservative and not expose Mattie to such heavy narcotics if they aren't truly needed. So we shall see how Mattie does today without Demerol. Mattie was premedicated with tylenol and Vistaril (an antihistamine for nausea) and then had his MTP-PE infusion at 7:10pm. It is completed now and so far he is doing fine without receiving Demerol. Mattie's urine pH is still too acidic so the methotrexate infusion can not be administered until he has met this (7-8 pH level) criterion. It is 9:44pm now and they are estimating that it will take two more hours before Mattie is ready for methotrexate to be administered. Getting the feeling it will be a long night for us?

We want to thank the Bires family for a wonderful dinner tonight. California Pizza Kitchen is one of our favorites, and I never tried a BBQ pizza, but it was delicious and Mattie enjoyed the pasta. We are trying to unwind tonight, but we also know we have a full night ahead of us, of capturing urine every four hours so that the efficiency and effectiveness of Mattie's kidneys can be assessed after being exposed to high dose methotrexate. We are in room 1 of the PICU, my all time favorite room (I am being totally sarcastic!). This room is right next to the tube system that shoots up medication from all over the hospital. It makes a racket, not to mention that we are the first room as you enter the PICU. The hallway traffic sounds are intense in this room. We were worried that we would not be able to get a sleeping chair in the room today, and Peter and I were wondering how we both were going to stay in the hospital overnight. It seems like all cots and chairs are being used by hospital personnel who are required to stay overnight for emergency preparedness due to inauguration activities. But we lucked out and one of the nurses found a chair for us.

I end tonight with a wonderful e-mail message I received from Mary Doane. Mary's family gave Mattie a "terrible towel" yesterday. I really did not know the story behind the towel, and Mary sent this to me today. I love the message behind the towel, and I am happy to support such a worthy cause. Mary wrote, "Interesting note ..Members of the Steeler Nation know all too well the story of the Terrible Towel. It was a brainchild of beloved and dearly departed Myron Cope during the Noll Dynasty. The magic of the towel lasted beyond the retirement of Chuck Noll, maintained its staying power throughout the entire Cowher age, and is still going strong in the early years of the Tomlin era. The towels are manufactured in Wisconsin by Chippewa River Industries. Proceeds from the sale of the towels benefit Chippewa, which employs the mentally disabled, and helps to pay for their care. Myron Cope also collected royalties and donated all of them to the Allegheny Valley School, a special needs place where his autistic son is a resident. Before he died, Cope bequeathed the Towel rights to the school, ensuring proper care for his son and for many others."

Sunday, January 18, 2009

Sunday, January 18, 2009

Charlie wrote this to me today. "I know it is tough to think about going back into the hospital after so much time away. At least you are returning to a place where the staff understands and welcomes Mattie as a whole person and desperately wants him to get well. I hope that knowing all of us are once again with you and praying for Mattie to get to the LAST set of chemotherapy will help you find the strength to continue the difficult journey to remission."

Quote of the day:
"The only courage that matters is the kind that gets you from one moment to the next." ~Mignon McLaughlin

Charlie is indeed correct. Returning tomorrow to the hospital is painful. Not that our life was particularly normal the last three weeks that we were away from the hospital, but we did have some level of freedom that totally gets stripped away when we are inpatient. Thankfully though if we have to be in the hospital, we can be at Georgetown.

Mattie had another quiet day and he did not want to leave our house again today. In all reality that was okay, because it was freezing outside, and our DC neighborhood was in what I would call a lock down mode from the inauguration activities by the Lincoln Memorial. Wow! It is kind of scary when you can't easily leave or get back to your home! We want to thank Carrie for checking in with us today from Team Mattie and we want to thank the Doane family for making their way to the city today to drop off dinner to us. This was NO easy feat, since practically every bridge from Virginia into DC was closed because of inauguration security. Mike even called me, because he couldn't get close to our home by car, he literally was required to park and walk to drop off food. Thank you so much for doing this on such a cold day. Dinner was wonderful and Mattie is enjoying the special stars and stripes cookie, and of course the chocolate pastries were greatly appreciated. I must admit I did not know what a "terrible towel" was, so I had to ask Peter. In fact, the towel (which if you a Steelers fan, you know that this is a symbol of encouragement and loyalty to the Pittsburgh Steelers) inspired Peter and Mattie to watch some of the game!

Mattie and Peter spent the day playing together and they even accomplished a 500 piece puzzle. Mattie was very proud of this accomplishment. I on the other hand had an excellent excuse to leave our home. It was Ann's birthday. As most of you know, Ann is our Team Mattie coordinator. She does so much for our family from coordinating meals, the Team, and activities, to inspiring Mattie to move his body, and the list goes on. There was no way I could allow this special occasion to go by without celebrating with Ann. So today we had the opportunity to spend part of the day together. We had a wonderful time, and it is moments like this that I file away in my mental database and pull up and reflect upon during the difficult days ahead.

As I was driving home today, I ran into incredible traffic. What normally would take about 20 minutes, took me over 90 minutes tonight. The funny part is typically this traffic would have made me very agitated, but instead I called Peter while driving. Peter put Mattie on the phone and they spoke to me for about 30 minutes on speaker phone. Mattie told me about his day and then Peter said they were awaiting my arrival because.... and then Mattie piped in and said, "there is no one like Mommy!" Well do I need to say more? This was a great gift, and totally unsolicitated.

As I sign off tonight, Peter and I still have a dressing change of Mattie's central line to perform and to get him hooked up to his IV. We are also in the midst of doing a 24 urine collection so that the hospital staff can assess whether Mattie is able to get Methotrexate tomorrow. I also have to figure out what we need to take to the hospital so that we can attempt to be at Georgetown by 10am. Good luck with that! Thank you all for your continued support and for continuing to read the blog. This means a lot to our family.