Saturday, March 21, 2009

Saturday, March 21, 2009

Quote of the day: "Your sacred space is where you can find yourself again and again." ~ Joseph Campbell

Peter stayed with Mattie last night, so I could get a decent night of sleep. Peter was up every two hours helping Mattie go to the bathroom. Mattie's fluid volume has been increased, so he receives 1000ml of fluid each night. It is a huge bag of fluid, and in all reality whether we are home or in the hospital, when we sleep with Mattie we are up every two hours. None the less the privacy of being at home is a special treat. You do not realize what a luxury privacy is until you don't have it.

Today Mattie and Peter had a boys day together. They went out to Home Depot to buy new sand for Mattie's sandbox and to get some other things. They also went to Target together. When they came home they cleaned out Mattie's sandbox and shoveled out all the old sand, so that Mattie could play in his box with the new sand. Mattie had a glorious time outside and in the sandbox, despite it being cold out. He really wanted this outdoor time, and I am happy Peter could help him get it. Later in the afternoon, Peter helped Mattie reorganize his vast lego collection! Things looked more organized when I got home, but unfortunately, there were unexpected additions on my ceiling. I found several bugs attached to the ceiling! Lovely! Just what I needed. They both love freaking me out.

While the boys were together today, I spent several hours away from the house. A couple of days ago Ann e-mailed a bunch of her friends to alert us to the fact that she and her family were going on vacation. While she is gone she asked if we could stop by to see her parents who live in a retirement/assisted living facility near Ann's house. In addition to everything Ann does for her children, her children's school, and community, not to mention Mattie, she also is a full time caregiver for her parents, and oversees their care. Her parents rely on her and when she goes away it places a real void in their lives. Needless to say when I received Ann's e-mail, I knew I wanted to help. Ann does so much for my family and rarely asks much of those around her, but when she sent this e-mail, I knew no matter what I was going through I was determined to find a way to visit her parents.

I have always loved spending time with older adults. Maybe this is because my maternal grandmother lived with my parents and I when I was growing up, and I learned at an early age that the older generation has so much to offer in terms of knowledge, love, and wisdom. I realize that the literature claims that wisdom doesn't really come with age. But from my perspective research doesn't match my reality. Some how older adults are not in such a mad rush, instead they have the time to reflect, truly observe what is going on around them, and comment on things based on their years of experience. It is an unfortunate reality however that our society doesn't give as much time and attention to the older generation, a generation that spent decades being productive and caring members of our society. A generation that helped to make our country great and as strong as it is. If you doubt the relevance of my statement, then I challenge you to visit any assisted living or nurse home for a reality check. Many of these residents are not as lucky as Ann's parents. Why? Because many of these once vibrant and active individuals are now forgotten by family. Rarely do they get visits or have the ability to be connected with the outside world. In fact when I hear children say it is boring to spend time with older adults, I get very upset. This is a rich opportunity for learning that is missed. If I had my way in the world, I would make volunteering in a nursing home a mandatory experience for every student. Cross generational learning is imperative, and study after study shows the health benefits to both populations. But for older adults, spending time with children helps them engage mentally and physically, and we all know that when we use our minds and body, this has huge benefits for our spirit and emotions.

Sorry for the digression, but caring for older adults is one of my passions, and I devoted my graduate education and clinical experience to this population! When I arrived at the assisted living center today, I signed myself in and was concerned that Ann's parents wouldn't recognize me. They only met me twice, and I certainly did not want to make them uncomfortable. However, to my surprise Ann's mother recognized me from across the room. Ann's parents were participating in a spring party at the center, and there were musicians playing wonderful songs for the residents. So I cut across the musicians, and sat between Ann's parents. Ann's mom grabbed a hold of me and hugged me and then held my hand for the entire musical performance. What you need to understand is that Ann's mom and I share something in common. Ann's mom lost her son to lung cancer, and of course Mattie is dealing with a life threatening illness. Let me tell you there are huge commonalities in our lives despite the fact that we are generations apart. I had a lovely time listening to the music, seeing the other residents, and then helping Ann's mom back to her room. I visited with Ann's parents for several hours, and in that time, I had the opportunity to hear many wonderful stories about their family's life, and Mary (Ann's mom) said to me she can't understand why some people (like ourselves) are forced to deal with so much in our lives. I couldn't agree more. What particularly struck me was how concerned Ann's parents were about Mattie. In fact, they knew about Mattie's scans on thursday as well as the results. Ann's dad told me that Ann visited them early thursday morning because by a certain time she told them she had to leave to come help me at the hospital. Instead of them being upset by her shortened visit, they seemed to really understand the importance for her to be there to help me. This level of care and concern truly touched me. Needless to say, I look forward to visiting them tomorrow and only wish I could visit them next week too. But as you know Mattie returns to the hospital on monday for treatment. Sure I am tired, sure I could have spent the day in bed, but you know what, that would have been a lost opportunity to connect with two lovely older adults. I believe that with every interaction we have with others we have an excellent opportunity to learn about ourselves, and in the end when we help and connect with another human being you can't help but feel good and alive.

After my visit with Ann's parents, I went to visit Tanja. Tanja is a SSSAS mom and is now a friend. Tanja has watched Mattie several times for me and Mattie really relates to her. Tanja invited me over to her home today for tea and cake. It was so special to sit in her enclosed outdoor patio area and enjoy delightful conversation, company, and tasty treats. I had the opportunity to talk with Tanja's husband and lovely daughter, Katharina. In fact, Katharina introduced me to their parakeet. He is simply a beautiful bird, and very social. My mom had a pet parakeet growing up that she always told me about. My mom and Flip (the name of the bird) were inseparable. I would always listen to this story but really couldn't grasp the concept. Then I met Katharina's bird, and I can now see what my mom has been talking about for years. Katharina's bird is like one of the family. He listens to conversation, sits and looks at you, and has something to say in response. Any case, I was introduced to the special world of parakeets today. Before I left, Tanja gave me a wonderful easel for Mattie, in which he will be able to stand to write, draw, and paint. Apparently this was Ann's easel, who gave it to Tanja, and now Tanja is giving it to me. If this easel could talk, it has helped and worked with many children over the years. Thank you Tanja for a lovely afternoon, your hospitality, and for the easel!

When I arrived home tonight, Mattie and Peter were having a great time. So while they were busy, I jumped into doing laundry so that things would be clean before we headed back to the hospital on monday. While I was doing laundry, the phone rang and it was Ann. Ann was at the airport, and ready to board her next flight, but wanted to call to thank me for visiting her parents. It is ironic, I never expected Ann to thank me, instead this is the least I can do to help her. How do you possibly repay a couple who has been there every step of the way to help Mattie recover and have a second chance at life (as most of you know Ann is our team Mattie coordinator and Bob is Mattie's surgeon)? I don't know, I am still working that one through.

We want to thank the Ferris family for a wonderful dinner tonight. We all ate well. Junko has found a restaurant in DC I just love, and I look forward to whatever she brings me from there. I also want to thank the Ferris family for all the heating pads they gave me tonight. I now swear by these products. You may recall that on wednesday night I could bearly move my neck and back from the intense stress I was feeling. Well I went to sleep with one of the heating pads that Junko gave me and then the next morning I could move again. Thank you for enhancing my supply! Mattie loved the gifts as well, especially the bug in an ice cube!

I would like to share a message I received from my friend Charlie. Charlie wrote, “Reading Friday's blog, I realized how much of an impact lack of personal space has on Mattie and everyone else. In the hospital, people are constantly in your space, touching you, moving you, doing things to you that you have little or no control over. You also have no control over the environment, you cannot turn off the noise of the equipment, the voices, the lights, which function 24 hours a day, quite in violation of the normal cycles we all need for our sanity to survive. So it really isn't all that surprising that Mattie decided that the atmosphere of a bowling alley was just too much to deal with right now.I think the project on build your own hospital was quite amazing. I loved Mattie's thoughtful touches to make a very utilitarian environment into one that is welcoming and playful. It certainly would go a long way toward integrating the healing of body-mind-spirit that is so needed but so often overlooked."

I end tonight's blog with a song that we all sang today at the assisted living center. I always loved this song, and think it is very meaningful and special. It gives us all something to think about!
The Glory of Love
http://www.youtube.com/watch?v=wZ2fx4XZwT4

Friday, March 20, 2009

Friday, March 20, 2009

Quote of the day: "Gratitude is the memory of the heart." ~ Jean Baptiste Massieu

Before I tell you about Mattie's day, I want to acknowledge the passing of another wonderful child who we have had the opportunity to get to know at Georgetown. This child did not have cancer, but was waiting since October to have a transplant. This family is from Rhode Island and temporarily relocated here to attend Georgetown, because of its unique transplant program. We have watched this child go through so much since October just to stabilize him to qualify for a transplant. I found out this news today from Brandon, who text messaged me. Peter and I are deeply saddened to receive this news and we can only imagine how these parents feel, since they practically lived at the hospital for the past several months to assure the healthy return of their son. The irony is before Mattie's diagnosis, I understood this kind of pain (the loss of a child) on a cerebral level, but now such news profoundly affects us. Living in a PICU has opened up my heart and mind to pains really no one should have to see, feel, or even imagine. Please keep this family in your thoughts and prayers, since God is forcing them to deal with and accept the impossible, the death of a child.

Mattie woke up with a lot of energy. I received an e-mail from Ann last night who invited us out bowling with her children today. Mattie's school is officially on spring break, so this seemed like the perfect opportunity for him to have a social experience. I told Mattie about bowling when he woke up, and he seemed interested. You need to understand that Mattie could bowl at this alley, because they have metal ramp structures which you can place the ball on top of for your child and all he would have to do is push the ball down the ramp with his hands. However, as the time approached in the day for Mattie to get out of his pajamas and get ready to go, he balled up and had a major mood change. He did not want to leave our house, nor did he want to get dressed. I tried to get down to the bottom of this refusal, and he explained that he did not want to go bowling because he was scared. He wouldn't elaborate on this but I assured him no one was going to judge him and I would be there every step of the way with him. He was listening, but then continued to tell me he did not like the smells in the bowling alley or the noise from the music. Such sensory comments are nothing novel for me to hear from Mattie. He had lots of sensory issues when he was a toddler and preschooler, but worked his way through many of them, thanks to his occupational therapist, Kathie. However, we have definitely taken some steps backward this year, and have reverted back to previous coping mechanisms, which involve shutting out parts of the world. I tried to talk with Mattie about bowling and encouraged him to give it a try. I told him if he wasn't happy after he tried bowling we could leave the alley and that would be fine. But the more I pressed the issue, the more I could see Mattie getting further upset. So needless to say, we never really worked through this today, and we also never left the house. Which I can assure you made for an extremely long day of playing and supervision.

So how did we spend our day? Well first Mattie played with cars, washed several of them, and dried them. Then we played with a big rubber ball together. We threw it back and forth to each other, and Mattie even wanted to dribble the ball. He was getting frustrated that he couldn't do it very well, but I kept encouraging him, so he wouldn't give up trying. Needless to say he got some exercise today, which I was happy about. He stood on both feet, balanced, and even took a step or two!

Mattie and I spent the rest of the day designing a hospital out of legos. You may recall that I created a canvas for the art show at Georgetown that addresses the question, "What should a hospital be like?" Mattie tried to answer this question by designing something in legos. He hasn't wanted to participate in this project, but today I explained to him that the show was going to be next week, and if he wanted to display something, he had to build it. He thought about it for a while, and asked me if the art work was going to get judged. I said NO! I told him that everyone's art work would appreciated. This is exactly what Mattie needed to hear. At first I was contemplating getting Mattie a predesigned hospital lego set that he could put together, but then Peter encouraged me to allow Mattie to freely think about this himself without a set design to follow. That was a great idea, because some wonderful things unfolded today. Check out Mattie's hospital!

Left: An aerial view of the hospital! On the left, you will see a tree house with a ladder, and a garden area with a fountain and trees. It isn't pictured but there is even a swing under the tree house! In the middle of the display is the hospital room and underneath it is a pool like shower. On the right is where the ambulance comes into the hospital along with a helicopter transport!

Right: A closer view of the garden area. There is a parrot sitting on the fountain, and the fountain even has a gold lego coin inside of it, for good luck! There is a bench in the garden and the fountain is surrounded by trees.

Left: A close up of the patient's room. The bed has a smiley face on its head board! The room has a gold table, with a computer on it, two chairs, and a pole lamp. The irony is the room is about the same size as our room at Georgetown! That made me laugh.

Right: The pool like private shower/bathtub!

Left: A closer view of the ambulance bay and heliport!

Mattie even had a visit from JJ (our resident Jack Russell Terrier) today. But Mattie was in a very private mood, and wouldn't even talk with JP or acknowledge JJ. Mattie's moodiness can be hard to handle, but fortunately I haven't seen this type of moodiness in a while. I think a part of it was caused from a very long and taxing day at the hospital yesterday. I think he really needed the time to unwind. I was thrilled to see Peter tonight when he walked home from work. I literally gave him time to change and then I headed upstairs and slept for two hours. I was so tired, that I could bearly function. While I was sleeping, Peter and Mattie built together and even got outside for some fresh air.

When I woke up, I prepared the lovely dinner that the Phillips' family dropped off for us. Thank you for the homemade chicken. It was delicious and we all enjoyed it. Mattie also loved the animal crackers and I know he will love using the kite. He loves flying kites! Thank you for supporting us today. Mattie received a lovely hand made card in the mail for healing from the 3's sunday school of St. Paul's Episcopal Church. Thank you for thinking of Mattie and keeping him in your prayers.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "I am grateful today, for the results of the scans and for the kindness of all those who helped Vicki and Mattie navigate the difficulties of yesterday at the clinic. So to all of you, both named and unnamed in Thursday's blog who made the day more pleasant for Mattie, helped Vicki get what was needed to make things happen, provided food, emotional support, kind words and prayers, go my sincere thanks. As usual, the best laid plans never seem to work out the way they are supposed to but thank goodness it all got done and the news was good. I know it would have been far more difficult without assistance from so many helping hands and hearts, so this poem is dedicated to all of you..."

For each new morning with its light,

For rest and shelter of the night,

For health and food, for love and friends,

For everything Thy goodness sends. ~ Ralph Waldo Emerson

Thursday, March 19, 2009

Thursday, March 19, 2009


Quote of the day: "Kindness is more than deeds. It is an attitude, an expression, a look, a touch. It is anything that lifts another person." ~ Anonymous

Despite some glitches in today's scans, which I will explain shortly, I have to say I was surrounded by many people who performed various acts of kindness. I think everyone who dealt with us at the hospital knew how stressful today's scans were, and really tried to help make it go smoothly. For that I am forever grateful, and I feel the need to comment on this. In particular Peter and I couldn't have gotten through the day without our immediate support team of Ann (who was with me for about four and a half hours at the hospital!), Linda (who entertained and kept Mattie engaged and happy for MANY hours), Catherine (our case manager who helped me tremendously work through Georgetown's registration system), and of course Jenny and Jessie who occupied Mattie for the afternoon hours in the clinic. How on earth do you thank such incredible people? I don't know! Also, I want to thank all of you who sent me e-mails last night and today and of course all of you who kept Mattie in your prayers all day. Your support made all the difference in the world.

Peter helped me get Mattie up and ready to go to the hospital bright and early this morning. Poor Mattie did not know what hit him, he was very groggy when Peter woke him up! I got Mattie washed up a bit, and Peter got Mattie dressed, flushed his central lines, and also helped load us into the car. Peter made the morning bearable and helped me get Mattie to the hospital on time! We also got a wonderful parking space at the hospital. So things were aligning this morning! When we entered the hospital, I had to go through admissions for a day procedure, and before we headed up to nuclear medicine, Mattie spotted Jenny in the gift store, and wanted to wait to say hello to her. It was very sweet. Jenny started our day off on the right note. When Mattie and I got up to nuclear medicine, things started to fall through the cracks. It began with the simple fact that no one had our doctor's order for a bone scan today. However, at least this department was proactive and called around to get it for me, so I wouldn't have to schlep all over the hospital. While we were waiting in the nuclear medicine reception area, Linda found us. Linda brought a cart load of activities for Mattie. Mattie was looking forward to seeing Linda today, and from the moment we parked the car until he saw her, he was worried about whether Linda would find us. In this reception area, I had the opportunity to meet a teen with osteosarcoma. He was diagnosed in 2005. His mom told me that since 2005, he has had reoccurrences twice. Mind you this child only had one tumor site in his leg in 2005, but then a year later it spread to his lungs, and now to an area of the brain. It was a chilling story, and revealing, because it is the luck of the draw who will never have a reoccurence and who will be plagued with this horrible disease again and again.

At around 9am, Mattie had a dye injected into him at the nuclear medicine department. The dye is designed to help light up active bone sites (usually indicative of cancer) within Mattie's body while undergoing a bone scan. The dye has to sit and circulate in his body for three hours. So his bone scan was scheduled for noon. After the dye was injected, Linda and I took Mattie to the Lombardi Clinic to wait until 10am, for his CT scan. It was there we did a blood draw, so that we wouldn't have to wait for blood results after all the scans were done! Linda and I were moving at a clip today, because after 20 minutes in the clinic, we proceeded to the CT scan department. While in route, we met up with Ann. Ann also had her bag of tricks in hand, along with hot tea and wonderful Irish Soda bread that she made! Thankfully I had Linda and Ann with me today, because it was from this point on that chaos unfolded.

When we got to the CT department, it was a three ring circus. I found a hole in Georgetown's system today, a thing I seem to be good at doing. Mattie's CT was scheduled through the sedation department because in the past Mattie would get very scared of testing, and would need to be sedated to complete the task. So today, we had back up sedation, just in case Mattie couldn't go through the scans without medication. Linda and I were confident Mattie could do it, but if not, we wanted to make sure that the scans could be completed, which is why we always do back up sedation. Okay, so in theory the sedation group booked our scan. However, when we got to the CT department, they had no documentation that Mattie was getting a CT scan today, and because they couldn't find his name on the schedule, they stated he couldn't get the scan. Not something you tell a mom who is already on the edge of nervousness. There is no way I was going to postpone this torture for another day! So I began to find out what paper work was needed by the department in order to process the request for a scan. So I left Mattie with Linda and Ann, and I went back to the Lombardi Clinic and was fortunate to find Catherine Silver, our case manager. She helped me every step of the way. Catherine printed out Mattie's CT order for me and we both walked it to the radiology department where the CT scan is located. But forget it, even with an order, they couldn't find Mattie in the system. They said that we would have to talk with the sedation department who booked Mattie's scan. So Catherine and I left the first floor and found our way to the fifth floor to pay a visit to the sedation department to find out where the snafu was taking place. Clearly there was a breakdown in communcation between the CT and sedation departments. In a nutshell, because Mattie was on the books for having back up sedation (meaning he doesn't need planned sedation, but if he got scared the back up plan was to give sedation so that the scans would take place), we did not have a sedation nurse assigned to us, and therefore did not have the appropriate stickers and documentation to admit Mattie for a CT scan. If Debbi (our sedation nurse who was going to be with us today but who has been out sick all week) were with us, she would have had this documentation and we wouldn't have had this problem, but because we were traveling without a sedation nurse to verify that sedation booked the CT room, we were lost in a system that was going no where fast. What I found particularly troubling is that the sedation department can book CT scans but the CT department can't access the sedation department's scheduling system. I don't know about you, but this makes no sense to me.

This whole battle to get the CT scans done was really unnecessary. It also was very frustrating to have to experience this on top of an already stressful day. Also what if I did not have Linda and Ann with me. What would have happened to Mattie? I would have been schelpping him all over the hospital trying to figure this out! Eventually Catherine and I got Norma, another sedation nurse, to help us and she came along for all our scans and served as our back up sedation nurse. Once we had Norma, things fell into place.

At first, Mattie was intimidated to go onto the CT scan table. It was a new room, he did not have Jey running the scan either, so there were a host of new variables. But after several minutes Mattie managed to be coaxed to the table. Linda had a video going, and we were jumping around the scanning machine trying to talk and entertain him. He did very well with this scan, which seemed to take about 2o minutes or so. I got a kick out of the radiologist though, because she came to talk with me before the scans. She started talking with me about positions she would have to put Mattie's body in to get clear scans. She requested that Mattie's arms go up above his head and that he lie on his tummy. Neither were going to happen. Mattie will NEVER be able to lift his right arm above his head, even the best physical therapist wouldn't be able to accomplish this task. Why? Because many of the muscles to accomplish this task were removed in surgery. It is a very interesting experience when you have to educate a medical doctor about your child's limitations. I find very few doctors understand bone cancer and don't get me started on prostheses. I think many of them need a prostheses 101 lecture.

Once the CT scan was done, we had a few minutes to get to our next destination, to the Bone Scan, back at the nuclear medicine department. Now what you need to understand is Mattie was unable to eat or drink anything since midnight. So it is now noon, and Mattie is starving. Since we weren't sure whether Mattie was going to get sedation or not, we had to play it safe, and not allow him to eat or drink. If the CT scan issue wasn't enough, the bone scan experience was truly over the top! He had a scanning tech that we weren't familiar with, which was okay, but as he continued to work with Mattie I grew and more concerned about what he was doing. He did the bone scan once, and we thought he was done. Mattie even got off the table, and we were ready to head to lunch. But then he came back and said that he needed to scan another part of Mattie again. So Mattie wasn't happy about going back on the table, but he complied. However, this went on four or five times. I noticed he seemed to be very focused on Mattie's right arm. So focused that I began to get alarmed that something was wrong. He started asking us about Mattie's central line. He wanted to know if it could be removed, which of course it can't unless through surgery. Any way, then he started waving something over Mattie, and it was at that point that Ann and I both were losing it. Ann paced the hallway, called Bob, and Linda went to find a radiologist for us to talk to. I tell you Linda is a fantastic patient advocate! Anycase, I waited outside the scanning room to confront the radiologist. I practically jumped on him in the hallway, and started questioning him. He looked at me funny at first, but then I introduced myself as Mattie's mom, and he instantaneously perked up. He explained why they were doing multiple scans of the right arm. As he was talking I began to get even more concerned, because he used a word I don't like. He said the scan "lite" up by the right humerus. He tried to explain this away and then said why he is being cautious and taking multiple pictures using different methods to block out light glare to truly understand what is happening in the region. He thought I was complaining about the number of scans, which of course I wasn't, I was complaining because I wanted to understand what was going on. Needless to say, once the scan was FINALLY over, the doctor called Ann and I back out and showed us the scan results. What was lighting up was calicification by the prosthetic. I knew about this calcification back in December, so this wasn't news to me. However, I guess since he wasn't familiar with Mattie's case, he couldn't explain what he was seeing. So it was like we had to fill in the missing pieces for him. Wow! He was a lovely doctor, but he scared the living day lights out of me today. I think Ann and I were sitting on pins and needles.

While Mattie was undergoing the bone scan, he just had to have a donut to eat. He was getting shaky without having food in his system. Fortunately Ann brought Mattie's favorite donuts. So I snapped a picture of Mattie on the scanner eating a donut. It is a cute picture, but really what I want you to notice is look how close the scanner is to Mattie's legs? About an inch away! Well can you imagine Mattie's head under this scanner, with the machine only about two inches away from his face? Well Mattie had to sit like this for several minutes! This closeness to a machine would be difficult for most adults to contend with much less a six year old child. But Mattie was a trooper today. He dealt with all of it! Not only was I thoroughly proud of Mattie, but I have a six year old hero in my life, it is Mattie. He shows signs of bravery and courage that I don't even have within myself. Many times I realize I am asking him to do things and be exposed to toxic things, that I am not sure I could do to myself. So to me, he is a hero and is teaching all of us so many valuable lessons.

After the bone scan, we headed back to clinic. Ann ran around getting us lunch, while I got Mattie settled in clinic and admnistered his premedications in order to get an infusion of MTP-PE. It was like a marathon day today. We were in the hospital at 8:30am, and did not get home until after 6pm! I wasn't in the clinic long, when Dr. Toretsky and Dr. Synder got a hold of me and pulled me into a room to discuss Mattie's test results. Dr. Toretsky explained to me that the CT scan revealed that two of the lung lesions hadn't changed, but the other two looked slightly bigger by 1-2mm. He feels this is indicative of osteosarcoma, but then both doctors did tell me that the actual measurements of these lesions is not a precise science. So in theory the difference between January and today's measurement could be an error. So the next scan will give refer evidence to what is going on, but that it is positive there aren't additional lesions, and the current ones aren't growing significantly. They then told me that the bone scan revealed calcification of the right humerus. Dr. Toretsky and Dr. Synder weren't concerned by this, but said they would be following it with subsequent scans. Later in the day, Dr. Bob called me and told me that he isn't surprised that this area lite up in the scans. This is a natural reaction to major surgery, in which reactive bone activity or scar tissue in essence will form. This further indicates to me, that it is crucial who reads your scan results. You need to have professionals trained in your specialty area who can shed light on what is going on. I only wish Bob were with Ann and I today during this bone scan ordeal. The waiting, the multiple retaking of scans, and so forth were all so unsettling and nerve racking. Thank you Ann for sitting with me while getting the results from the doctors. I am not sure where Ann finds the inner strength to sit through all of this, especially since she lived through lung cancer with her brother, but I feel lucky to have someone like Ann in our life.

Mattie spent the rest of the afternoon having a good time in clinic. Linda gave Mattie six prizes for his bravery today. He loved the gifts, and one gift was a voice recorder that he got a kick out of all afternoon. He recorded himself making all sorts of noise, and played it back for everyone. Mattie was productive and created some beautiful products. I took pictures of all of them for you to check out.

Left: A picture of Mattie and Jessie with his abstract acrylic painting on canvas. Mattie was very proud of this work.

Right: Mattie's wooden robot!

Left: Mattie painting a picture for Peter. It features Peter and Mattie together, along with our cat, Patches.

Right: A painting Mattie made for me!

Mattie handled his MTP-PE infusion very well today. When I was driving Mattie home, he fell asleep in the car. When I got home. I just sat in the car for a while, and let Mattie sleep longer. Peter was on his way home, and I just waited in the car until Peter could help us upstairs. While waiting for Peter, Ann called me. Ann and I debriefed about today. We laughed and talked seriously about other things that happened in the course of today. Ann did notice though that when I got anxious while talking to the radiologist about the bone scan results in the hallway, that this triggered a reaction from Mattie. Yes indeed, Mattie feeds off of me, which is why I try to remain calm and rational around him. But sometimes the moment gets the best of me.

Once Mattie got home, he continued to rest. He was exhauted from his full day of scans and the clinic. But while we were having dinner, he perked up again, and now he is playing with Peter. Peter and I are SO thrilled to have today behind us with relatively positive results! I am not sure what is worse, going through this waiting game while with Mattie at the hospital, or being at work on pins and needles like Peter, waiting for some news through the phone. I tried my best today to text message and to call Peter. I think Peter and I made a well coordinated team even though we were in different locations!

As we head into friday, we are all breathing a lot easier. Or at least until the next scan! THANK YOU, THANK YOU for all the support! Peter and I appreciate every e-mail! I would like to share a message I received today from my friend Charlie. Charlie wrote, "Wednesday's blog was something I was very anxious to see. I could hardly wait to see if Mattie had made it to the circus and to find out what he thought about it. It was great to see him all excited and with all of his circus memorabilia. What a terrific way to spend the day. I know the circus is not what any of us adults remember but now they have to compete with special effects movies and video games so things naturally have to go to another level. It was very special of Brandon to get the nose for Mattie and emblematic of all the small and large acts of kindness we've seen all the way through Mattie's treatment.All our thoughts and prayers will be with Mattie, you and Pete today as you navigate the scans and the results. May our prayers reach the Lord's ears and have a positive response from on high. Amen."

I end the blog with a song that captures the sentiment of the day. I have the greatest American hero (to me!), and he is only 6!

http://www.youtube.com/watch?v=iBKqwdxUH8U&feature=related

Thursday at 3:30pm - Updates from Pete

Update at 3:30pm on Thursday ---------
Mattie is in Clinic getting MTP to be followed by platelets. Vicki met with Drs. Snyder and Toretsky and here is the news: Mattie's four lung lesions are still present; two of the lesions are unchanged and two appear that they might have increased in size by a millimeter. However, the two lesions that have appeared to have increased are still too small to definitively conclude that they are cancerous metastases (commonly called "mets"). Also, the increase in size from the last set of scans could also be attributed to a measurement error. So in other words, there is no conclusive proof that these are cancerous mets. We are presently taking this as good news since most importantly, there are no new mets in his lungs, and that the possible increase in the size of two of the mets could be explained away through measurement error. Regardless, we are certain that we will want these lesions removed from Mattie's lungs once his chemo ends in mid-May, so Vicki and I are now turning to the hunt for a pulmonary oncology specialist as well as the top-notch surgeon specializing in this type of surgery. Also, given the location of the lesions the surgery will be performed arthroscopically (versus having the crack the rib cage). More to come later.......


Update from 2:00pm on Thursday ---------
As of Thursday at 2:00pm, Mattie has just completed his bone scan and CT Scan. Vicki will update the blog later on the experiences from this morning (as it was anything but straight-forward). Mattie and Vicki are now in clinic and Mattie has been pre-medicated for his MTP. Mattie will also be getting an infusion of Platelets today, so it looks like it's going to be a marathon day for Mattie and Vicki once again. More to come later....

Wednesday, March 18, 2009

Wednesday, March 18, 2009 -- We made it to the Circus, the "Greatest Show on Earth (or so they say)!"

Quote of the day: "No matter how long the winter, spring is sure to follow." ~ Proverb

Today was a busy day! As it was Wednesday, Mattie had the opportunity to spend part of his day with Whitney (one of Linda's former childlife interns). Whitney and Mattie had a wonderful time together building and playing trains. I introduce you to our newest version of the Empire State Building in our living room.

Whitney and Mattie built a train track also that went from one of our bedrooms through the hallway to the next bedroom. It was very impressive. I took a picture of Mattie and Peter's mom playing with the tracks later today.

While Whitney and Mattie were having a good time together, I took Peter's parents out today to go antique shopping. We hit three stores and then had lunch. It is kind of funny, I know I am doing these activities, but I am so tired and stressed out about tomorrow, that everything is just hazy for me right now. Or maybe not enjoyable. I realized just how stressed out I am because I find I can't move my neck, and when Peter was driving the car tonight I was screaming in pain from my neck down through my back. I just can't handle this scan stress, and the irony is I better get used to it, because they aren't going away anytime soon.

When I got back this afternoon, I bumped into JJ (our resident Jack Russell Terrier) and JP. JP bought six dunkin donuts for Mattie. His favorites, vanilla frosted donuts. Mattie never disappoints, and gladly ate a donut. Thanks JP! When I entered our home, Mattie and Whitney were having a great time together. It is a blessing to be able to leave the house and know that Mattie is happy and having a good time. Whitney is so special to us. I then said good-bye to Whitney and I went to lie down for about 30 minutes before heading off to the circus. Two hours before the circus event today, I let Mattie know that Denise, our social worker, gave us five tickets. The tickets were very special, because they were in the Lexus Suite box at the Verizon Center. Mattie was very excited! I figured I would wait until the last minute to tell Mattie about the event, so as to not disappoint him in case he couldn't go.

Before we left for the circus, I got a text message from Brandon, Mattie's big buddy for Georgetown. It turns out that Brandon, his mom, and a friend were going to the circus tonight too! Just by happenstance! We were all so happy that we could see Brandon tonight, unfortunately though Brandon wasn't sitting in the box with us, so because of the size of the arena, Mattie never got to see him. We left Mattie with his grandparents in the box and Peter and I went down several floors to track down Brandon. Brandon had his clown hat and nose on and we found him immediately. Peter took a picture of us together. Brandon was kind enough to get a clown nose for Mattie too. Brandon knew Mattie wouldn't be able to get to the stage to pick up a nose so instead picked up a nose for Mattie! How thoughtful! But that is Brandon. He gives me hope in the next generation! I promised Brandon I would take a picture of Mattie with his clown nose. I think Mattie makes a great clown too. It was wonderful to see Brandon's mom, Toni tonight too. Another person I miss seeing at the hospital!

Watching Mattie at the circus was priceless. He had a super time! He loved every minute of it. He couldn't even tell us which was his favorite part. He loved the clowns, the motorcycles, acrobats, tigers, trapzee artists, elephants, and the bubbles. The irony is the last time I went to the circus, I was a child. The circus is NOT the circus I remember. It is now like a floor show that you would see in Las Vegas. It is overstimulating, very loud, and multiple things are happening on the stage at one time. I also question the brand of humor that is being sold to small children. But then again, I came into the circus with my own lens of what the circus should be. To Mattie however, this was the greatest show on earth. After all, this was about him and so long as he was bouncing up and down and smiling, I was okay with the whole thing.

Peter and I got some things for Mattie to remember his trip to the circus. By the time we were finished with him, he was glowing. He wore light up sunglasses, he held a light up sword, and was holding a light up whirling elephant. I snapped a picture of Mattie with all these items. I thought it was priceless! The picture on the right features one the scenes from the circus this evening.

After the show was over, we dropped off Peter's parents at their hotel and said our good-byes. They are flying to South Carolina tomorow to visit a friend. Mattie enjoyed his visit with his grandparents and he was happy they could go to the circus with him. As for us, we are trying to wind down now after an evening of excitement. I know that tomorrow's scans weigh heavily on both Peter and I and either way, I can't wait for the day to be over with.

We want to thank the Bires family for a wonderful dinner tonight. Thank you for thinking of all of us. We appreciate your generosity! We also want to thank Charlie for her great care package to Mattie. Mattie loved the train and the bugs especially, and I of course love the chocolate!

I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote, "How lovely that you got to spend part of Tuesday outside seeing the signs of spring returning. Just like the seasons turn and the world goes from grays and browns to greens and the signs of life renewed, I hope this foretells Mattie's return to the world of children-full of life, hope, vitality and color! I do hope he stays well enough to attend the circus on Wednesday evening. Hearing about Mattie able to take part in more normal events is great news for us and so motivating for him. I know that Thursday brings the scans and with them come hopeful thoughts but lots of anxiety too; know that your friends and family are with you on this, we are praying for the best possible outcome for Mattie."

Happy St. Patrick's Day

March 17, 2009



Happy St. Patrick's Day to all our readers!


An Irish Prayer

May God give you...For every storm, a rainbow,
For every tear, a smile,

For every care, a promise,

And a blessing in each trial.

For every problem life sends,

A faithful friend to share,

For every sigh, a sweet song,

And an answer for each prayer.

Before I tell you about our day, I thought you may like to know some facts about St. Patrick and shamrocks! Enjoy! Saint Patrick’s Day is celebrated each year on March 17th. In Ireland, Saint Patrick’s Day is both a holy day and a national holiday. Saint Patrick is the patron saint of Ireland as he was the one who brought Christianity to the Irish. According to legend, Saint Patrick used a shamrock to explain about God. The shamrock, which looks like clover, has three leaves on each stem. Saint Patrick told the people that the shamrock was like the idea of the Trinity – that in the one God there are three divine beings: the Father, the Son and the Holy Spirit. The shamrock was sacred to the Druids, so Saint Patrick’s use of it in explaining the trinity was very wise. Although it began in Ireland, Saint Patrick’s Day is celebrated in countries around the world. People with Irish heritage remind themselves of the beautiful green countryside of Ireland by wearing green and taking part in the festivities.

Mattie went to bed at around 12:15am, had his usual periodic wake up calls to use the bathroom throughout the night, but somehow had enough energy to get up early this morning! While I got dressed and did various other things, Mattie kept himself busy by doing a new lego set that Linda gave him. He literally put this set together all by himself. Mattie is still taking GCSF (white blood cell growth factor), and while he was getting his medicine this morning we discussed what he would like to do today when his grandparents came over. Mattie wanted to go for a walk and get fresh air, which was a good idea for all of us!

Peter's parents came over around 11am, and Peter's mom played with Mattie for several hours today. While they were playing, I went to take a nap for about 45 minutes. The problem with taking a nap is it is impossible to get up, and at this point, I am so sleep deprived that no amount of napping is going to help my situation. Before we headed out for our walk, we had a wonderful lunch together thanks to Liza May (a friend and SSSAS upper school mom). Liza prepared lunch for all of us, and her artichoke and leek chicken was fabulous, and she even made bug shaped pastas for Mattie. That was a huge success. While Mattie was eating lunch with us, he did several activities from the Scooby Doo activity books that Liza gave him. So lunch was very tasty and put us all in a good mood. Thank you Liza for out doing yourself!

We drove to Roosevelt Island after lunch and walked around the entire trail. Pushing the wheelchair on the trail became challenging at times because there was mud everywhere. None the less we all enjoyed the fresh air, seeing the first signs of spring coming in, and even feeding the ducks. Mattie was non-stop chatter throughout the entire trip. In fact, he was talking so much, that I wondered at times it he even stopped to catch his breath. I took a picture of Mattie with his grandparents on the trail. By the time we got back to the car, we were all somewhat


covered in mud. Mattie fell asleep during the car trip home, but by the time I brought him inside, he was wide awake and ready for his next form of entertainment and diversion. He had a 10 minute power nap, and apparently that helped him recharge for the rest of the day. It is hard to believe sometimes that Mattie has cancer, when I observe his level of activity!

When Peter got home tonight, we all had a nice dinner together thanks to the Keefe family. Thank you Debbie for including a beautiful dinner for all of us. In celebration of St. Patrick's Day, we had a tasty Irish Stew with sour dough bread. Mattie ate well too, and we all loved the tasty desserts as well! While we were eating dinner, Mattie was doing Kidpix on his computer. He was having a great time making pictures and also typing words and hearing them sounded out on the computer. It is funny to hear the computer reading whatever Mattie was typing. After dinner, Mattie played with a wonderful game the Keefe's gave him. A deluxe version of Rushhour. Mattie is quite good at this game because it involves spatial relationships. Thank you for making this a great night for us!

Mattie was also visited twice by JJ (our resident Jack Russell Terrier) today. JJ brought Mattie vanilla cupcakes. Mattie devoured one and was very happy that JJ thought of him!

As we head into wednesday, Whitney is coming over to spend time with Mattie for part of the day. Denise, Mattie's social worker, has given me tickets to take Mattie to the circus on wednesday evening. Based on my luck with Disney on Ice a few weeks ago, I decided NOT to tell Mattie about these tickets until about two hours before the circus. It is my hope that he will feel well enough to go tomorrow and enjoy this outting. Mattie has never been to the circus before. I think this will be a good mental diversion for me, so that I can forget about the thursday scans for a few hours.

As I end tonight's blog, I leave you with a message I received from my friend Charlie. Charlie wrote, "What a long day on Monday at the hospital and as usual how wonderful of everyone to keep Mattie productive and busy. As for Thursday's upcoming tests, thanks for sharing the reminder so that we can all put out our respective requests for prayerassistance. We can all join as a chorus of voices and hearts wishing Mattie good news from these scans no matter where we are. It is nice to see Mattie make continued progress on his path to regaining autonomy and independence. Just a few months ago, you would not have been able to be out of sight for even a few minutes and now Mattie is feeling much more comfortable reaching out to others again.You and Pete did a great job of managing his needs while not stopping him from regaining his independence skills. I am not sure everyone appreciates what a fine line you had to walk on that. May you now see the rainbow at the end of the long months of showers."


A Wish for a Friend (mind you I am not Irish, but I most definitely celebrate the spirit of the day!)


Wishing you a rainbow
For sunlight after showers-Miles and miles of Irish smiles
For golden happy hours-Shamrocks at your doorway
For luck and laughter too,
And a host of friends that never ends
Each day your whole life through!

Monday, March 16, 2009

Monday, March 16, 2009

As we approach St. Patrick's day, I share an Irish Blessing with you (thanks Charlie)!

May the good saints protect you,cAnd bless you today. And may troubles ignore you, Each step of the way. May God grant you always...A sunbeam to warm you, A moonbeam to charm you, A sheltering angel, so nothing can harm you.


As many of you know thursday is another big day for Mattie. Mattie will be getting bone scans (to determine if any other tumors are popping up in his bones), and several CT scans (to monitor the lesions in his lungs, and to examine all four of his surgerical sites). Though this is several days away, I began focusing upon this on sunday night. Never a good thing, because what I landed up accomplishing was that I couldn't fall asleep. I finally went to bed at 4am. Needless to say I wasn't functioning very well today. For those of you who pray for Mattie, I ask you to think about Mattie at 10am and 11am on thursday when the scans will be taking place. May God hear our prayers.

Mattie had a good night of sleep, other than being up every two hours to use the bathroom. When Mattie woke up this morning, I administered GCSF (white blood cell growth factor) to him, and there after, Peter's parents arrived. We got Mattie cleaned up, dressed, and headed to the Lombardi Clinic. We spent a record amount of time in the clinic today. We were there from 11:30am until 6:30pm! Wow! I was wiped out after this immensely LONG day. Thankfully Jessie and Linda tag teamed and helped with Mattie. I think Peter's parents enjoyed meeting our hospital family and got a better feeling for what the clinic was about. Mattie created another box project, played with model magic, and painted. Mattie was having another great play scenario with Jessie today (which started out with his made up character, Pinky), but to be honest, I was focused on my own art project addressing "What a hospital should be'" that I tuned in an out of their story line. Of course that can also happen when I am tired and I just can't co-process what is happening around me. Jessie is truly delightful, and has a wonderful way with Mattie. Jessie is also great at making up different characters and voices, and she is thoroughly entertaining to listen to! I will never forget the smile Jessie brought to my face one day when she visited Mattie in the PICU after one of his surgeries. Mattie was in a bad way, and Jessie brought the room to life with several made up characters. Some things I will never forget!

At around lunch time, we had a visit from Laurie D. (a SSSAS mom!). Laurie brought lunch for all of us, including Peter's parents. It was a very generous and delicious lunch, and I am happy to report that Mattie ate a significant amount of his happy meal! Thank you Laurie for the wonderful book fair gifts too. All of them were new to Mattie. He did the fish puzzle several times in the clinic, he started painting the car piggybank, and even loved the train card game. All the gifts were a hit, and the food and goodies were a hit with all of us. Thank you for your incredible support, it is so appreciated. You helped us through a day that never seemed to end.

Jessie had a special delivery of a lego playtable, which was donated to the clinic today. However, the table came unassembled. So Peter's dad, mom, Mattie, and Linda worked on putting this table together. Mattie was right in there helping with the allen wrench and screwdriver. Mattie was determined to get the project done, and he was very patient and diligent! Linda played with Mattie for several hours today, and we so appreciate her coming down from the PICU to be with us. I honestly don't know where I would be without Linda, Jenny, and Jessie. Luckily I don't need to find out. Life is hard enough without this thought.

As the afternoon wore on, and Mattie's blood results came back, I realized he would need a blood transfusion. Mattie's hemoglobin level was very low, which would explain why as the day wore on, he started to look very pale and was getting worn out. Mattie handled his MTP-PE infusion very well. The infusion took about an hour, and there after, he had a blood transfusion which took three hours. During the infusion, Dr. Synder examined Mattie. But Mattie was getting agitated and did not want to comply with the exam. Dr. Synder understands Mattie's personality, and told him she would come back in a little while. During that time, Mattie fell asleep in my lap and Linda helped me transition Mattie to a bed, where he rested for over an hour. While Mattie was sleeping, I called Dr. Synder back in so she could examine Mattie, which worked out well. Dr. Synder spoke to me several times today. I discussed with her my level of stress and fear about thursday. I also told her about my pending fear about the end of Mattie's treatment in May. I told her that I can imagine when I tell others that I am apprehensive about May, they may not understand the sentiments behind these feelings. But she assured me that most parents who have children with cancer have this intense fear once treatment stops as well, because once treatment stops nothing is actively fighting off the cancer. The only difference between these other parents and myself is I am thinking months ahead (since I started with this reasoning in February) of the actual end date. Dr. Synder, knowing me and my professional background, did not find this fore thought unusual, and in fact, she thought it was very healthy. It takes me a while to process these fears, and I figure the sooner I deal with them, the better I will be in the long run.

At around 6pm, Mattie's blood transfusion was complete. But it was at that point that he sneezed, and with that came out lots of blood. So the nurse called Dr. Synder back to examine the discharge. Dr. Synder and I discussed back and forth what to do, and she gave us the choice of either staying a few more hours for a platelet transfusion (to help clot Mattie's blood, since his platelet count is declining), or we could go home and if the bleeding continued we would come back to the hospital. After spending seven hours in the hospital already, we elected to go home, and so far, Mattie is doing fine and has a good amount of energy.

We want to thank the Tilch family for a wonderful dinner and for their support. Mattie loved the pasta and Peter and I loved the salads and tasty treats. I so appreciate all of you who keep me going on chocolate! As I write this blog, Peter and Mattie and painting the rest of the piggy bank that Laurie gave Mattie! I think you will be happy to know that Mattie's shamrock sunglasses, necklace, and headband were a huge hit in the clinic today!

As I sign off for the night, I would like to share an e-mail my friend Charlie sent me. Charlie wrote, "It was lovely to read about Mattie's day and how much progress he's made. We are all celebrating the return of his good disposition and his enjoyment of life. I loved the picture of Mattie all dressed for St Patrick's Day and the trip to the restaurant. Sometimes things can seem almost normal and then I remember that there are still trips to the hospital ahead of you. I hope they are as uneventful as possible."

Sunday, March 15, 2009

Sunday, March 15, 2009

Quote of the day: "God's promises are like the stars; the darker the night the brighter they shine." ~ David Nicholas

Mattie's grandparents came over this morning and played with him for a bit, before his next special visitor for the day arrived. Mattie had a visit from his lower school's head of school, Bob Weiman. Bob came over with a bag full of tricks, literally. In addition to being Mattie's head of school, he is also a gifted magician, a skill he learned from his father, and I think kids instantly relate to Bob because of this unique skill. Before Bob taught Mattie several new tricks, he gave him a very unique gift that his wife, Cara found for Mattie. It is a plastic ball, that when you squeeze it you see roaches and other gross bugs popping out of it. Mattie was in awe of this ball. In fact, Mattie wants to get a bunch of these balls for his birthday party in the spring.

Mattie performed a new trick with Bob's assistance. The peanut butter and jelly trick was great fun, and Mattie had a full audience to watch the performance. Peter's parents loved watching Mattie learning to become a magician. In the picture on the left you can see Bob performing the new trick with Mattie and in the picture on the right, Mattie is performing a coin trick, and you will notice Bob is proudly looking on as his student is entertaining his audience. Mattie is certainly almost ready to start performing at the hospital. It was a very good visit, and we want to thank Bob for a wonderfully generous lunch!

After Bob left today, Peter and I went out for the afternoon. We went out to eat together, chatted for several hours, and then did some chores. When we arrived back home, Mattie was having a great time with his grandparents. They built a world puzzle together, and talked about specific countries in the world that Mattie would be familiar with. They did a lot of fun things together this afternoon and even watched the movie, Cars. JJ (our Jack Russell Terrier) also came by to visit with Mattie. So in essence, it has been a busy day for Mattie, and he was in good spirits and very energetic!

This evening, Peter, Mattie, and Peter's parents went to visit our favorite local restaurant, The Magic Gourd. Before they left, I took a picture of this three some. Please note who is getting in the St. Patrick's day spirit! Mattie is sporting his shamrock sunglasses (thanks Tamra), his shamrock headband, and necklace!

I decided not to go to the restaurant, I was too tired, and I wanted the time to work on the art project for the hospital that is due at the end of the month. Remember I am trying to artistically answer the question, "What should a hospital be?" When Mattie got to the restaurant, he said hello to the owner, Frank, but he said it in Chinese. Mattie is learning some Chinese from a TV show he watches, and Frank was stunned but happy to hear Mattie's greeting. Mattie apparently ate up a storm at dinner such as chicken, rice, and ice cream! Way to go Mattie!

Tonight, Peter and I changed Mattie's central line dressing. It was the world's easiest dressing change. A first for us, mainly because the dressing adhesive was loosening naturally. So we did a dressing change in about 30 minutes as compared to the usual 90 minutes or longer.

On Monday, Mattie is headed back to the clinic for a check up, vitals, blood draw, and MTP-PE infusion. I have been warned that Mattie will most likely need a blood transfusion as well. I want to thank Betsy for checking in today and being our Mattie helper for the day!

As I end tonight's posting, I would like to share an e-mail send to me by my friend Charlie. Charlie wrote, "Strange how our minds work isn't it? We can be somewhere else, do everything that is asked of us and yet a small piece of our mind continues to work on whatever it is that is the true concern of the day. Once we've done what we need to do it takes only a moment or a word or thought to drive it into the forefront of our being once again. Cancer is the elephant in the room. We can all see it, but no one knows how to get it to leave or make it take up less space so we spend a lot of time tiptoeing around it and pretending that it isn't there with us every minute. Everyone sees it but the words any of us have to offer fall far short and none of them will get it to leave so we don't speak about it rather than risk saying the wrong thing. As you said, no one can make it go away and all the words don't begin to describe how it is to live with cancer. Really listening and keeping company in a painful space is the best gift that can be offered."