Saturday, February 7, 2009

Saturday, February 7, 2009

Quote of the day: "The greatest gift you can give another is the purity of your attention." ~ Unknown

Charlie wrote, "Once again in the blog we see the value of giving of one's time and attention to someone who needs it. All of these people, many of whom could have completed a desk full of work came out of their offices and from behind desks to participate with Mattie. I think that speaks so highly of the healing community that surrounds all of you. Some of Mattie's favorite presents are the ones that people took the time to make with him, not necessarily the most expensive ones. The gift of time adds a value all its own to any situation. I was so happy to hear that Mattie took some steps on his own without the walker. I hope they are just the first steps on a long, healthy and joyful path through life for him."

Mattie had a decent night of sleep on friday. He was up several times going to the bathroom, and Peter and I are so tired, that now we both acknowledge that sometimes we do not even hear Mattie calling for us at night. Mind you we are only about three to four feet away from him, so we should easily hear him. Ellen was our nurse last night. We just LOVE Ellen. She is a beautiful person and a fabulous nurse. She is the kind of nurse that will pull out books and do research on questions we have. She went into the research mode last night when we told her of our concern with the national shortage of Vistaril, the antihistamine that Mattie is using to combat nausea. I realize it may sound ridiculous, but I am just more comfortable with the Hem/Onc nurses we have already established a rapport with, when a new nurse comes into our lives (and this does happen on occasion), I feel like I have to be on hyper alert mode. Because this person really needs to be trained to understand Mattie and our needs. As Tricia (one of our favorite day nurses) tells me often, Peter and I are really like nurse techs. We take Mattie's blood pressure, temperatures, collect urine for analysis, and so forth on our own. We do this in part because Mattie is just more comfortable with us, but we also feel we want the nurses to focus on the more important aspects of Mattie's care. I am deeply inspired by these Hem/Onc nurses at Georgetown!

Peter and I woke up this morning at 7am to the sound of drilling. The promise I keep hearing from hospital staff is that the Hem/Onc wing of the hospital will be up and operational by April. At the moment, the Hem/Onc unit has been blended with the PICU. It has been this way since we began chemo in August. It is interesting to observe and experience the differences between PICU and Hem/Onc nurses. They deal with different issues and this greatly influences the type of nursing care that is therefore needed and provided. Having experienced both teams (PICU and Hem/Onc), I can honestly say they are both very competent teams. The PICU team delivered quality care for Mattie after both surgeries, but the PICU team is used to dealing with crises and unconscious patients, and the Hem/Onc team is used to dealing with long-term patients and their families. Because of the length of service cancer patients need, these nurses have to get to know their families they are working with. I think this style difference has caused some adjustment when these two groups of nurses were put together under the same PICU roof. So I am excited to see how the Hem/Onc nursing staff functions when they are in their own unit. Frankly, I am so used to the activity of the PICU, that I wonder how we will deal with quiet and no sounds of the monitors 24 by 7. So though the drilling tries my patience, I keep reflecting on what the ultimate outcome is, a new Hem/Onc wing.

Peter and I popped up after hearing the drills, and got ready for the day. We also started packing up while Mattie was sleeping. Our hope was that we would be discharged from the hospital mid-morning. We packed up smoothly and then Dr. Synder came to visit us at 11am. She told us that Mattie would need to remain in the hospital until at least 3pm for IV hydration. Because the chemo he was on is so intense, the protocol calls for 24 hours of post hydration. She bent the rules a bit, by letting us out early at 3pm. But Mattie was DEEPLY UNHAPPY when he heard that he had to remain in the hospital until the afternoon. He further got upset to hear that the playroom was closed and that Linda wasn't around. So Peter and I came up with Plan B. I had Peter pack up the car, and head home with all our things. The reason I did this was because I had booked a haircut for myself at 4pm today. The last time I got my hair cut was in July (the month my life stopped), and I thought I deserved a break. But I knew if Mattie got released at 3pm, I wouldn't be able to help Peter upstairs to our home with Mattie and all our things. So we divided and conquered today. Peter went home and unpacked, and then came back to the hospital with lunch for me.

Meanwhile, I kept Mattie busy. We played on the computer for two hours, and then when Peter got back, he took Mattie to the parent lounge to feed the fish. A priviledge Linda has given Mattie. He takes this seriously! When Mattie got back, I knew he was going to complain about wanting to leave, so I quickly located a movie for him to watch. We watched Homeward Bound today. It was a lovely movie about dogs who missed their owners. The owners had relocated and left the animals behind. But the dogs took it upon themselves to find their own way home to be reunited with their owners! While we were watching the movie, we were visited by Anthony. Who is Anthony? Anthony is one of the engineers at the hospital who has helped me many a time when I have complained about the lack of heat. Anthony visits us periodically. Today he came in and said hi to Mattie. Each time he visits us, he says a prayer. Anthony has deep spiritual convictions, and feels the Lord is going to bless and watch over and protect Mattie. I am not sure where I am at with all of this, but I know that Anthony deeply believes this and his convictions are helping guide me back to my own religious beliefs. Anthony led Peter, Mattie, and I in prayer. Mattie at one point looked at me while Anthony was praying, and smiled. Just a sweet and pure smile. To me, when Mattie smiles, it can melt your heart.

Once Anthony left, we were visited by Nguyet. Nguyet is another wonderful Hem/Onc nurse who we haven't seen in a while. Mainly because she works on weekends, and we haven't been in during weekends for a while. Nguyet was working in the transplant unit today with Tricia. Any case, Nguyet came over to thank us for her Christmas gift. She said that all the Hem/Onc nurses were thoroughly touched by the fact that we even acknowledged them while we are in the midst of Mattie's battle with cancer. What the nurses don't realize is that we had a whole bunch of Team Mattie elves working behind the scenes to make sure these gifts were purchased and wrapped beautifully! I then walked back to the transplant unit with Nguyet and met up with Tricia too. Tricia and I had a fun and lively conversation, as we always do. I guess my point is, doesn't this sound more like I am saying good bye to friends then leaving a hospital? These nurses have become our friends. They have seen Peter and I through some difficult times and have shared the good times too. Nguyet asked me an interesting question today. She asked how easy was it to be home? A very intelligent question. Being home is HARD. In some aspects it is harder to be home than in the hospital. As strange as that sounds. At home, I don't have ANY help. I can't turn to Linda, Jenny, and Jessie and a whole nursing staff. I found it insightful that Nguyet could empathetize with this immediately.

We left the hospital at 3pm, and then Peter and Mattie dropped me off at the salon. Celina, who cuts my hair, established her own salon on M street, NW. I hadn't been to her new salon, but when I entered she and her husband gave me a huge hug and asked about Mattie. Celina's husband walked me back to get a manicure. Mind you I did not schedule a manicure. But he wanted to pamper me today, and told me they don't know how to help me, so giving me the gift of a service would make them happy. I certainly wasn't going to turn that down. It was lovely to chat with adults today and to sit and drink cappuccino (yes, you are right I don't like coffee, but there are times it just works). In a way I feel like a new person today. I lopped off about three inches of my hair, but sometimes you just need to do that to feel healthy again.

After going to the salon I literally walked back from M street to our home. It was a beautiful and unseasonably warm day in DC. In the 50s. It felt like the start of spring. The walk was a wonderful part of my day, because I rarely get much physical exercise anymore. Most days my body aches, and I don't feel fit or healthy anymore. But I guess this is a small price to pay to try to restore Mattie's health. When I got home, I unpacked some things, and then I could feel Mattie's excitement. Mattie was looking forward to seeing Louise and Meredith (two lovely teenagers from SSSAS's upper school). Their family has been so supportive of us, and Mattie loves his time with the girls. When Tamra, their mom, told me that the girls wanted to come over tonight, I literally jumped at the chance for the help.

Meredith and Louise brought Mattie a special gift tonight. When Meredith was a little girl she asked Santa for a tipi. This was something she loved and she wanted to pass it along to Mattie. I find gifts like this so special, when someone wants to share a prized and meaningful possession with you, something that brought great joy in her own life. Mattie was SO excited to see the tipi and to set it up in our living room. Apparently he has announced that he is sleeping in the tipi tonight. We shall see how that works, especially with his IV going. Here are some wonderful pictures of Mattie in motion with the girls.

Left: The tipi meets Mattie's tent and tunnel! It is a welcomed addition!

Right: Mattie having a serious conversation with Meredith!

Mattie and Louise heading into the tipi!

What do you say about two teenage girls who lead busy lives and yet find the time to visit a six year old boy on a saturday night? I think Louise and Meredith are very special people and they bring out the fun and spirit in Mattie! I thank them for sharing their tipi with Mattie and their evening with us so that Peter and I could go out to dinner and have a moment to talk and pretend to lead a normal life for two hours. Thank you, the gift of time is priceless.

When Peter and I got home tonight, Mattie said goodbye to the girls and told them they could come back any time. High compliments! As we tried to settle Mattie into the evening, Peter and Mattie built for a bit and then Mattie started to feel nauseous. The doctors did not give us IV kytril for the weekend, so I am stuck at home with oral Zolfran. Major problem. Mattie refuses to take oral medication when he isn't feeling well and Peter and I had quite a battle with him tonight. We did get him into bed, hooked him up to an IV, with a sling on his left arm and tight t-shirt around his body to keep his arm secure, and now he is watching the movie, Racing Stripes that the Coker's gave him today.

We want to thank the Coker family for a wonderful dinner tonight. Peter and came home starving from the hospital, and the chili was delicious along with the cornbread. I appreciate these home cooked meals and I continue to experience some wonderful foods that need to go into Mattie's cookbook. Thank you Carolyn for the cupcakes too and Mattie thanks you for all the wonderful valentine's day gifts and cards from Ellie and Gavin. I think the rubber frog was a hit, along with the scooby books, and the new movie!

I started the day by reading the following e-mail. Susan C. is a former student of mine. I would imagine by now, you can see I taught some very special people. Susan wrote, "What a wonderful and glorious day to be taking Mattie home! I have to say that reading your blog has become a part of my daily routine. I feel like I am part of the family! As I write this I am still choked up from the photo of you and Mattie nose-to-nose. That has to be the sweetest photo I have seen yet of the two of you! Only second to all of the photos with you or Mattie smiling and enjoying life. What a struggle. But what joy you must experience every time you are able to have a moment like that! This may sound stupid, but since you said stupid comments and questions are allowed, I will fire away! I often feel sorry for people who have never experienced a life struggle. Having experienced the excrutiating pain of my sister's death, I can see the world more clearly, with compassionate eyes. As I put it often, I'm able to cut through the crap and really focus on what matters. As painful as it is to live every day without Cheryl, I love the fact that I can be empathic to others in a way that only one who has struggled can truly understand. The pain that our family has experienced only makes the bright moments even more amazing and wonderful. So in a way, I am grateful for the pain. Vicki, there is nobody more empathic than you, and here you are in a position of struggle, and you are reaching out to others more than ever! You extend hands to other parents of cancer patients. You receive help in a humble and appreciative way. You even, for crying out loud, try your hardest to educate others about the mental health side of a family's battle with cancer. What are you, superwoman? In the face of great adversity you have shown such strength of character, such a high level of class and tact, and such devotion and love, that I am simply speechless. There needs to be more Vicki Sardi's in the world!!!!!"

As I sign off for the night, Peter and I are on a quest tomorrow to track down a phosphorus supplement for Mattie. Mattie's kidneys are flushing phosphorus from his body leaving him with a very low level. Phosphorus is an essential mineral that is required by every cell in the body for normal function. The majority of the phosphorus in the body is found as phosphate. Approximately 85% of the body's phosphorus is found in bone. Inadequate phosphorus intake results in abnormally low serum phosphate levels (hypophosphatemia). The effects of hypophosphatemia may include loss of appetite, anemia, muscle weakness, bone pain, rickets, increased susceptibility to infection, numbness and tingling of the extremities, and difficulty walking. We certainly are going to try to encourage Mattie to consume more dairy products which are high in phosphorus, but eating right now is not top on his list. We are uncertain whether this is a temporary or permenant condition. If I made a list of all the long term problems Mattie is likely to have, I could probably roll up in a ball and become depressed by this alone. But I keep reflecting on what our ultimate goal is............SURVIVAL!!!

Friday, February 6, 2009

Friday, February 6, 2009

Quote of the day: “Kind words can be short and easy to speak, but their echoes are truly endless.” ~ Mother Teresa of Calcutta

Charlie wrote, "I was struck by how hurtful the resident's words were. How often so many of us say something without thinking about the impact of what we say on the person who hears us. Why do we so often assume the worst about someone, rather than the best? How much better our world would be if we were all like Tricia, quick to defend those who cannot defend themselves or who might not even be there to hear what was said (although the ripples of the words continue with or without the presence of the person who was discussed). How hard would it have been for the resident to make no assumptions but just say, you seem tired, is there something I can do to help? and then wait to see the response rather than assuming something about your personal situation. We can all learn from this. Extend the helping hand rather than the critical tongue."

Mattie woke up this morning and had a visit from Ann. Ann came with a bag full of tricks, and Mattie always knows Ann doesn't disappoint. Ann gave Mattie a remote controlled tarantula. Creepy crawling things just fascinate Mattie, and Mattie couldn't wait to get the batteries into the toy to scare a few people. This toy was a lesson in humility. It took me, Ann, and Meg to put this thing together, and after all of that we deduced the company gave us a defective 1.5 volt battery. None the less, Mattie was having a great time directing all three of us and using a screw driver to assemble the spider pieces. Ann even ran to the hospital gift shop to try to get a new battery in order to get this spider to crawl. While Ann went in search of batteries, Mattie, myself, and Meg did another activity that Ann brought. The activity produced a cute smiley face washcloth. When Ann got back, we all headed to the playroom, and Ann helped Mattie build a volcano. Ann entertained Mattie for quite a bit of time, while I had a minute to myself. During that time, another mom on the floor found me and wanted to talk. The same mom you may recall me talking about, the mom whose daughter was on life support several weeks ago. I can't explain this, but HEM/ONC parents instantly feel a sense of camaraderie with each other. This mom invited me into her room and she introduced me to her baby. The baby was very sweet and had every possible tube connected to her. The mom even showed me her photo album of the baby before she developed cancer. It was a very touching visit.

After my visit, I was greeted by Dawnee. Dawnee is the former assistant director of Resurrection Children's Center, Mattie's preschool. Dawnee brought us a lovely lunch, smoothies and all. I had a wonderful opportunity to catch up with Dawnee and our family appreciates her support. Dawnee and I then went into the playroom to see what Mattie was up to. Before we got there, we could smell some serious vinegar in the hallway. Mattie, Ann, and Linda were mixing up some sort of "lava" mixture to send shooting up the three volcanoes they created. Ann was showing Mattie a map of where you would find a volcano in the world. Mattie was having a great time in the playroom, and you could see and hear great joy and laughter filling the room. Mattie created and colored each of the volcanoes before sending lava through them. Take a look at this great activity......................

Left: Mattie with his three volcanoes!

Right: Linda working hard to make sure the volcano erupted.

Mattie, Linda, and Ann playing and chatting!

Soon there after, Anna arrived and Mattie had another amazing PT session. Before the session began Mattie was asked to wash his hands in the playroom because they were covered in vinegar. I was trying to get Mattie's walker (aka: the cat - Mattie named his walker today and he selected that name because of the tail of beads trailing behind the walker), and before I knew it, Mattie literally took two or three steps by himself, unassisted by the walker. I wish I caught a picture of that, but today he gave me a taste of what is to come.

Jenny, Jessie, and Denise all came from the clinic today to participate in Mattie PT session. Mattie was surrounded by all his favorite women. Just the way he likes it. Jenny and Jessie used their creative skills to set up an incentive chart, a chart that Mattie could relate to. Wait until you see this chart. I am sure you can imagine a chart with lines, stickers, and so forth to monitor Mattie's progress. But Nope that is not what they created! We know that type of behavioral chart doesn't work for Mattie, so what about a chart with a cockroach? Check out this creative box/chart.

By the lower left corner of the box, you will see the word, "start" and of course a model magic cockroach. This roach looks VERY real! As Mattie walks using the walker and moves from one place to another in our house, the cockroach gets to move ahead to another circular velcro piece. So in essence Mattie has to walk at least four times with the walker at home in the day, in order for the cockroach to be able to walk through the "bug spray" tube. At the end of the tube, the roach drops into a cup filled with wood chips for him to eat. Once the roach gets to his finishing place, Mattie qualifies for earning a prize. It is a very clever way of illustrating Mattie's progress in a day, and an incentive system that hopefully will work for Mattie. I can't thank Jenny and Jessie enough for their creativity, and for taking into account Mattie's interests which will more likely motivate him to use the boxed chart.

Anna had a goal for Mattie today. She wanted him to walk one whole lap around the fifth floor. This is not a short distance, and Mattie has never been able to go more than 1/4 the way before. However, the roach chart, all the ladies, and the singing motivated Mattie to not only walk one lap around the floor, but he walked an additional 1/2 lap. Here are some pictures of this conga line below. Again people came out of their offices to watch this, and it seems to me most people on the fifth floor know or have heard about Mattie.

Mattie walking out of the playroom to start his PT goal of one lap around the floor.

The conga line: Mattie in the lead (with the scrub hat that Jey brought up for him today!), Jenny, Denise (Mattie's social worker), Jessie, and Marla (Anna's intern). Picture this group moving down the hallway and singing!

You can see Mattie talking to Jeff Turner. Jeff is the HEM/ONC nurse manager and he came out of his office to see Mattie in motion!

After Mattie's lap and a half, he then wanted to play twister again. He got all of us down on the floor twisting about, and then Marla and Mattie had several toe wars. This was actually a creative way to get Mattie to stretch out his right leg. I am working hard at trying to massage and stretch Mattie's right leg. Now that I understand the importance of getting this leg straight, I am trying to make a conscious effort to grab a hold of Mattie's leg while he is sitting still and watching TV.

Mattie spent a good part of the afternoon today in the playroom with Jenny and Jessie and several local high schoolers who came in to work with the kids at designing valentine's day cards. Jenny and Jessie gave me the opportunity to come back to the room and catch my breath, while Mattie was creating. I knew he would be working on a valentine's card for me, but what transpired, I would never have expected. Mattie made me an entire valentine's day box, and inside the box was a bracelet made out of pipe cleaners, a crown made of hearts, and a pile of beautiful hand cut and designed Valentine's. The one valentine that got me was the mommy and baby butterfly, or as Mattie called it the Mama and Mooshi (my nick name for Mattie) butterfly. Jenny took some pictures of Mattie surprising me with my gift! I think the photo of Mattie and I looking at each other is priceless.

After all this excitement Mattie headed back to his room to start getting ready to receive his fifth day of chemo. Mattie was administered Kytril tonight, but I did not recall him receiving Vistaril (the antihistamine). So right before the chemo infusion was about to take place, I started questionning Mattie's nurse. She did confirm that Vistaril wasn't given, and then told me the pharmacy couldn't locate any for Mattie's administration tonight. I told her in that case, Mattie wasn't getting chemo. I wasn't proceeding another step until I knew what other anti-emetic was available to him. Miki, a HEM/ONC nurse who has also been through many ups and downs with us, took it upon herself to call the pediatric pharmacy. Tonight she received the last four dosages of Vistaril in the hospital. However, the issue is that Vistaril is in short supply around the country. Isn't that wonderful?! So I e-mailed Mattie's doctors tonight to discuss alternatives for Mattie in the future since getting Vistaril seems to be such an issue. As it is, Mattie is sick to his stomach and refuses to eat or drink much of anything, but if we did not have Vistaril on board, the situation would have been even worse. I made this mistake earlier this week and experienced that Vistaril is a must.

Mattie was visited by Dr. Bob. Mattie's arm was de-rotated tonight for the third time. We are placing Mattie's arm in a sling now, and putting a tight shirt over his arm to prevent it from moving at night. Let's hope this is a viable solution to chickenarmitis (Bob's term that he uses with Mattie to describe the rotation of his prosthesis). Mattie showed Bob his cockroach chart and the special valentine that he made for Ann. In fact, Mattie asked to go back to the playroom late this afternoon with the specific desire to make a valentine for Ann. I thought that was very touching. While we were chatting with Bob tonight, Bob asked Mattie where his huge cockroach was. We explained that we lost the model magic roach, which I was very sad about. Mainly because it meant so much to Mattie and I remember him creating it with Jenny and Jessie. Well Christine, the Hem/ONC resident and Ellen, one of our favorite night nurses, were in the room, and told us they knew exactly where this roach was, they just did not know it was Mattie's. Apparently a nurse from the transplant unit found it and loved it so much, she had it on her desk. The roach has now been reunited with this rightful owner. This all happened because Bob innocently remarked about where the cockroach was!

We want to thank the Tordella family for an incredibly tasty dinner. Denise made pasta with shrimp. It was delicious and needs to go into Mattie's cookbook. In addition, Denise supplied me with my two favorite things, chocolate and fruit. She also made us homemade coffeecake, which was delicious. Mattie thanks you for the dunkin donuts too! Thanks for visiting tonight Denise and for all your support. Mattie loved the erector set, and has already built the bicycle with Peter, has read the books, and is now assembling the puzzle. Mattie is keeping Peter very busy!

I am saddened by the news I received yesterday from Mattie's school. We learned that there is a fifth grader at Mattie's school who was just diagnosed with a rare form of brain cancer. I can't believe two children on such a small campus have been hit with such rare diseases. One child on a campus dealing with cancer is hard enough, but two, just seems to compound the pain. I feel for this family and I remember these initial couple of weeks after Mattie was diagnosed. I felt like I could bearly function. My thoughts are with this family, and this little boy who has a tough road ahead of him. I think when children so close to us are stricken with these horrible diseases it gives us great pause. The only consolation for us and I am sure the other family is that we are both a part of the SSSAS community, which is extremely supportive.

We would like to thank Murray and Carol Tinkelman for their lovely Dinosaur poem book they sent Mattie. Murray is a mentor of Debbie Pollak's (Mattie's art teacher), and he did the wonderful illustrations in this book. Murray autographed the book for Mattie as well. This is such a special gift, and we are honored to have a copy. We look forward to exploring this book with Mattie.

I received the following e-mail from Ann today after her visit with Mattie. It meant a lot to hear her feedback. Ann has been a trustworthy and steadfast friend to both Mattie and I, and I feel despite living with this daily pain of knowing Mattie has cancer, it is a wonderful feeling to have this opportunity to be connected to such a selfless and loving individual. Ann wrote, "I was driving to gymnastics and I remembered something Mattie said today. He told me that in April, for his birthday, he would be "almost done with the hospital, at home and walking around just fine." He was totally positive and excited for his party. It made me realize how wonderfully you and Peter have managed his expectations - despite your conviction to be totally honest with him and tell him the truth always, he has not become afraid of the treatments or the plan he has to undergo - he sees it as a necessary part of his treatment, trusts you to help him through it and is such a brave and logical character!! The conversation was fascinating to me. God has given him (through you), the ability to cope in a way that is beyond adult comprehension. WOW!! He is a remarkable little person!!"

Mattie is scheduled to be released from the hospital on saturday, after he receives the rescue bladder drug, Mesna in the morning. We have a long day ahead with packing up and coming back home. We received a lovely e-mail tonight from Tamra, who let us know that Tamra's daughter, Louise wants to play with Mattie tomorrow night. What a special gift. Sharing one's time and energy to play with Mattie is about one of the best gifts someone could give us now. We are headed back to Georgetown on monday for a clinic visit, but technically Mattie is "off" for two weeks now to recover. From his last etoposide and ifosfamide infusion in December, Mattie became very sick and hospitalized for 8 days only four days after being released from the hospital. So to me this is the wait and see game. For a person who likes some sense of control, security, and stability in one's life, I can tell you the wait and see game is not well suited for my personality. Wish us well during move out day!

Thursday, February 5, 2009

Thursday, February 5, 2009

Quote of the day:

"May we remember to measure beauty and joy in our lives by brilliance and not by size or length of time -- many times, great beauty and joy are found in very small things and in very brief moments." ~ Laura Teresa Marquez

Charlie wrote, " So often it seems that the way a day goes depends on small things. How Mattie feels when he wakes up, which nurse is on duty, does the IV run well? We so easily forget that our lives are made up of all small things, and important moments. On such does one's life turn and one's feelings about the day evolve. I was thrilled to hear that Wednesday was a better day; again, the return of someone who understands Mattie's point of view makes a world of difference as to how the day ultimately goes. I could feel your relief that you were able to leave the room for a few minutes to get something done--such a small thing/short time but what a difference it makes in how you feel."

Mattie had a rough wednesday night. He was quite sick to his stomach. He never vomitted, but he was writhing in pain. He just couldn't get comfortable and he did not want us bringing food of any kind into the room. Hindsight is 20 20, because I later realized that Mattie needed to have Vistaril (an antihistamine) on board prior to the administration of the chemo. In December 2008, Mattie was first administered ifosfamide and etoposide, and during that time he was given kytril and dexamethazone as anti-emetics. However, he can not use dexamethazone now because he is taking the experimental drug, MTP-PE. Apparently dexamethazone, which is a steroid, will inhibit MTP-PE's effectiveness. So in many ways, we are in uncharted territory this time with how to manage Mattie's nausea. So last night, we had to use break through anti-emetics such as ativan. Well this some how hyped up Mattie for several hours (doing the opposite of what it was intended to do), and finally he fell asleep after 1am. He slept so soundly, that he went to the bathroom on himself twice during the night. So Peter and I got very little sleep, mainly because we had to change Mattie and his linens. I have learned my lesson enough to know that chemo is excreted in urine and that you don't want to be sitting in this stuff. How I functioned today is beyond me, and hats off to Peter, because I could not have put in a full day of work which requires a lot of mental energy.

Tricia was Mattie's nurse today. As always Tricia starts my day off with hot tea. It is just such a lovely gesture, because when I am with Tricia, I feel like she is caring for Mattie and myself. She is a mom, and she gets how hard this must be on a fellow mom. I have seen Tricia advocate for my family many a time, and you do not forget moments like this when you are too tired to fight yourself, and someone else steps in for you! She did this for us today again. Tricia told Peter tonight that the HEM/ONC resident came up to her and told her that I looked terrible today. Nice, no?! I guess she was asking why I looked this bad? She then asked Tricia if I was a single mom. You got to love this line of reasoning. So much for sensitivity, so much for trying to understand what a family is going through. Tricia did not let her get away with any of these comments. Tricia explained to the resident that I am a dedicated mom, and that Peter is an incredible dad who works by day and spends every night at the hospital. I don't think the resident had much to say afterwards. Part of me gets annoyed by such comments because I would like to have higher expectations for those working in the medical field, however, the other part of me feels like such comments inspire me on my mission and quest to educate the medical community to the psychological and emotional worlds of families dealing with cancer.

My morning started off on a different note than usual. There was a knock at my door, and the floor administrator told me that the Hospital chef wanted to talk with me. At first I thought she was kidding, but I walked outside Mattie's room, and there was Mark Hinkle dressed all in white with his chef's hat on. Mark was accompanied by Carmen. Carmen is a sweet woman who serves Mattie all his meals. She is very aware of the fact that Mattie eats nothing, but that it is important for him to eat. Well Carmen told Mark about Mattie, and he made it his business to introduce himself to me. He says he will make Mattie whatever he would like to eat, and in fact today, he delivered shakes at lunch and at dinner. He says he is using Mattie as is pilot test case. If Mattie likes the shakes, then he may introduce this to the other children on the unit. I tried to break it to Mark, that no matter what he cooks Mattie won't eat it. It is a control issue, and he has decided that NO hospital food will be consumed. So Mark has his work cut out for him.

Mattie slept in this morning, and while he was sleeping I bounced in and out of his room a couple of times to do laundry. We had a ton to do considering last night's incidents. Each time I left the room, I whispered in Mattie's ears where I was going. Always checking if he had to go to the bathroom before I left. Because he has a tendency to hold it, and then when he has to go, it is an emergency. When Mattie woke up, he was excited to work on my computer and to show me the work he did with Mary yesterday. He enjoyed his time with Mary and in his head he thought she was coming back again today. High compliments. In any case, he showed me his clipart creations, and even designed a few more things. While he was creating, I fed him an entire banana. But that is all he ate for most of the day. Then he complained that his stomach hurt him, and he is refusing all his oral supplements that he needs to take daily (such as calicium, phosophorus, and meds to prevent mouth sores which are a common side effect from chemo). Mattie quickly decided he wanted to head to the playroom.

In the playroom, Mattie met up with Linda and Meg. Mattie was also visited by Sally, the story lady. Sally was dressed in African garb today and looked lovely. She read Mattie an African American children's story and Mattie even got to play the drums during parts of the story. He loved the story so much, Sally read it three times to him. Sally gave Mattie his own hand drum, that he gets to decorate. I snapped a picture of Mattie and Sally having fun. I loved the message in the story, because basically it was telling children about the importance of following your passion, and when you do, you will be happy and this happiness spreads to others around you.

Mattie spent a good chuck of the morning with Linda digging through clay to reveal wonderful rocks such as rose quartz, agate, and amethyst.

Mattie was very proud of what he was able to excavate and he matched up what he dug out to the pictures of the rocks in the booklet. You can see the little scientist hard at work.

We want to thank the Cooper family for a lovely lunch today. I have to say, chocolate mixed with raspberries got me to smile today, and that is hard to do, since I am wiped out. I had the opportunity to meet with Christine today when she dropped off lunch. I actually jumped in her car to chat with her, and a part of me wanted to say to her, "step on the gas peddle and let's get out of here."

Mattie and I spent the afternoon building an airplane hangar out of a cardboard box in the childlife room. We had a good time doing this, and he was proud to show me that he could use a hot glue gun independently. His hangar turned out to be beautiful. What do you think?

Mattie headed back to his room unwillingly at 2pm. He had his second administration of MTP-PE for the week. He handled that well. While doing this, we watched the movie, "Space Buddies" again. However, he was getting restless and wanted to leave the room. But he is not allowed off the unit when having chemo. In addition, with MTP-PE, followed by etoposide, Mattie's blood pressure has to be monitored every 15 minutes for two hours. So literally he is tied to a blood pressure cuff. No easy task! Fortunately, Anna, Mattie's PT, showed up when Mattie was at his wits end. Anna did bowling with Mattie in our tiny room, and we even did a conga line from his room to outside his doorway. Meg, myself, and Anna played along with Mattie, and Anna got the idea of getting out a whoopie cushion and putting it on the floor for Mattie to walk toward. Believe me, nothing motivates a six year old boy more than the thought that he can make bathroom sounds and humor. He literally did speed walking to the whoopie cushion. Anna is very clever in the activities she proposes to Mattie, and I would say that he now has a good rapport with Anna, and she has been invited inside the inner circle.

Tonight, when Peter arrived, he found Mattie building on the floor in his room, and Ifosfamide was being administered to Mattie. Peter arrived at the hospital a little bit earlier, so that I could hop on a two hour long board conference call. I am not sure how I can compartmentalize my life and function (yet Peter does this every day!), but some how I managed. I continue to find it fascinating how people I work with skirt around Mattie's condition and our battle with cancer. As if the topic is too taboo or one doesn't know what to say, and therefore saying nothing is safer. But I can assure you, that saying nothing in many cases is far more painful than perhaps saying something that you think will sound stupid. When people do not address this issue with me, an issue that has become my life, I do get upset. But then, like any good counselor, I step back, assess how the issue makes others feel and then understand where the silence is coming from.

While I was on the board call, Peter text messaged me to let me know that Mattie was vomiting. Through texting we both decided to administer him Ativan. Another drug I am not wild about. It literally makes Mattie hyper. So do I want a hyper kid tonight or a kid that is vomiting? Hard to tell, I hope we made the right decision. At the moment, I am sitting in a quiet place that Linda found for me, so I could make a conference call and write tonight's blog. Escaping from the PICU for several hours has been wonderful.

As we head into friday, Mattie has one more day of receiving Etoposide and Ifosfamide. He most likely will receive hydration and the bladder rescue drug, Mesna, on saturday, and then hopefully be released later in the day on saturday. I wish for a better night tonight, but since Mattie is already vomiting this doesn't look promising.

Wednesday, February 4, 2009

Wednesday, February 4, 2009

Quote of the day (Thanks Camille!):

"When we come into the present, we begin to feel the life aroundus again, but we also encounter whatever we have been avoiding. Wemust have the courage to face whatever is present/our pain, ourdesires, our grief, our loss, our secret hopes our love/everythingthat moves us most deeply." ~ Jack Kornfield

We have accepted the fact that we will be up every two hours this week, while Mattie is on Ifosfamide and Etoposide. It isn't easy, but it just is the reality of the situation. Peter and I tried to break up the night duty. He took the first shift and I took the second. Mattie woke up today in a much better mood. Kathleen was our nurse today, and Kathleen and Mattie have a routine together. Mattie likes to search through Kathleen's pockets. His curious left foot will sneak right into her pockets and literally he picks out the contents. Kathleen surprised Mattie later in the playroom with something very unexpected in her pocket! Which I will tell you about later.

I now bring oatmeal packets to the hospital with me, because Mattie refuses all hospital meals. But one thing I notice is that I can now leave the room for a couple of minutes to heat up foods without Mattie panicking. This is real progress! Meg came by to visit Mattie this morning and she alerted us that Linda was back! Mattie was thrilled and literally wanted to jump into his wheelchair to go find her. He carried with him the two pins he made for Linda yesterday (one is a cockroach and the other pin said "Lovely Linda" on it). Last night we wrote on Linda's dry erase board, "Welcome Back, Love Room 10" and then we drew a heart and inside the heart we wrote, "We love Linda."

Mattie found Linda right away and he was very happy to see her. Linda got a kick out of the cockroach pin, and she is a real sport because she even wore it for Mattie today! Though Linda had a ton to catch up on today since she had been out last week, she found plenty of opportunities to play with Mattie today. She gave Mattie a lego set, which kept him busy for quite some time. Mattie also received more hotwheel cars from Linda today, and Mattie and I had a good time playing together in the playroom. While Mattie was in the playroom, Kathleen walked in with Sarah Marshall (another fine HEM/ONC nurse). Kathleen came up to Mattie and encouraged him to check her pockets. So he did! What he pulled out was a riot! I wish I had my camera with me. He pulled out a big pile of gak or in essence some sort of goopy substance. It was bright pink and very slimy. Mattie loved it! He then asked me to go back to the room, to get the "potty putty" Mattie received from Ann. Well the playroom turned into a very noisy zone, full of bathroom sounds that only a six year old boy would find pure joy in! He had the nurses laughing!

Soon there after, Jey came to visit. Jey got a kick out of the pink gak and putty! Jey has a good sense of humor and really played along with Mattie. Food was brought in today for lunch for all the families in the PICU. Linda delivered us a cheese pizza and Mattie helped himself to two pieces. Then we had a visit from Catherine M. Catherine is a RCC mom, and though I never met her while Mattie was in preschool, Catherine is supporting us and delivered us a lovely lunch. She even gave Mattie a wonderful riddles book! Mattie had two lunches and the way to get him to eat is through distractions. He gets busy doing things, and I find a way to shovel food into his mouth. In all reality he was like this when he was a baby! We have come full circle on his eating patterns.

At around 1:30pm, Anna came to work with Mattie. Anna came armed with activities to get Mattie moving. I have had a hard time getting Mattie up and moving at home. I get frustrated sometimes with Mattie's unwillingness to help himself. Everything with Mattie has to be subtle, you just can't do exercising, you have to play a game, or distract him with watching a movie and then grab his leg and try to stretch it out. Again, this is no revelation to working with a child. Everything is done through play, however, you have to understand Peter and I are becoming burnt out parents, and it is very hard to be able to serve these multiple roles: parent, advocate, nurse, mental health counselor, and physical therapist day in and day out.

Physical therapy today was very memorable. We all got a work out. Jessie came up from the clinic, and Linda joined us as well. What followed next was a riot. Anna got Mattie stomping his right foot on the ground, by hitting a leg pump which sent a rocket filled with bubbles into the air. I took a picture of this activity, and you can see Mattie staring up to the ceiling while watching the rocket.

After this activity, we then played a new kind of Twister. Only two of us could play at a time, and Mattie was calling the moves. Below you can see what he did to us as he called the colors that we should place our hands and feet on. We allowed him to turn us into pretzels, so that he would be cooperative to our request to walk later in the session.

You can see Anna and I beginning the twisting process. Which only got worse, until I ended up all balled up!

Mattie decided to pose for us on the Twister mat!

Mattie made Jessie and Linda do these Twister exercises too, but eventually it was his turn to walk. So Mattie strung together plastic cones and made a cone like tail and attached it to his posterior walker. He then had us walking behind him in a conga line. Literally we were singing while trailing after him in the hallways. People came out of their offices to see this caravan in motion. We sang things like 1, 2, buckle my shoe, 3, 4.....

From left to right: Linda, Jessie, Mattie, and Anna

After this wonderful PT session, Mattie headed back to the playroom with Jessie. Together they blew bubbles, but not ordinary bubbles. These bubbles looked like plastic, because they never popped. After Mattie made a mess, he literally took it upon himself to clean it up. Jessie and I helped him. They then did some crafts together and even used a spin art paint wheel. Mattie had a full afternoon. But it did not end there. Literally by the time we left the playroom, Mattie was surrounded by four female volunteers, myself, and Linda. He got them to do an art project with him and then they had an art contest.

At around 4:30pm, Mattie was visited by Mary Dressendorfer. Mary is the director of technology education at SSSAS, and she is Mattie's technology teacher. Mary is just a sweet soul and has such a calming demeanor. Mattie was excited to work with Mary today as he headed back to his room. Mary came to design valentine's day cards with him, but I forgot his mac computer at home. So much for my memory. Mary worked with Mattie using clip art on my computer. Mattie is learning some good computer skills in the process. Mary also brought Mattie a beautiful t-shirt with a charming frog on the front of it from her trip to Costa Rica. Mattie and Mary had a good time together, and he was pleased to show me his computer creations. Thank you Mary for your kindness and your generosity of time.

Dr. Bob also came by tonight to check out Mattie's left arm. Bob had some useful suggestions that Peter and I can follow and will be coming by tomorrow to derotate Mattie's arm again. At which point, Mattie will wear a sling to bed, and also will wear his pj top over his arm (we will not pull his arm through the sleeve, in hopes that having a shirt over the arm, will keep the arm in place). Anna did tell me today that the stretching I am doing to Mattie's right leg is helping extend his leg out straighter. So I took that as positive feedback and I will keep doing this while Mattie watches TV.

We want to thank the Keefe family for a wonderful dinner tonight. The curry chicken and rice were delicious. Thank you for the homecooked meal! The scooby doo pasta was also appreciated by Mattie, along with the shake. I literally ate all the fruit the Keefe's brought us while typing this blog! Much thanks for all the support.

I would like to share two e-mails I received today. One is from Mary D., a fellow RCC mom. Mary wrote, "For the first time ever, I found myself several days behind in reading the blog. I spent tonight catching up. What you write in your blog is truly inspiring on so many levels for all of us and gives me such perspective. I didn’t realize how much I missed hearing about what was going on in your lives and catching up on how Mattie is doing. You all continue to amaze me on so many levels. There have been so many things you have written about over the last several months that made such a connection with me. For instance, I worked in DC for many years and loved eating at the Magic Gourd. I haven’t been there in years. Also while working in DC, I remember that my association’s CEO used to get his hair cut at the Watergate Barber Shop, also by Melo. When I first started reading the blog, Mattie was very into Scooby Doo. The funny thing about Scooby is that while planning a 450-person conference in Las Vegas at Caesars Palace last October, my Reservations Manager (have known her for years) inadvertently sent me an e-mail that was supposed to go to the group coordinator who was booking guest rooms for Scooby Doo, as he was making an appearance in Vegas. When you wrote about the Muppets, Mike and I just laughed and it brought back so many wonderful memories that we had from watching the Muppets. In fact, someone sent me a “Ma Na Ma Na” song clip that was Pittsburgh Steelers related just before the Super Bowl. It was done as a play on the last name of one of their infamous players. When you sent the link for the Mary Tyler Moore theme song, it really made me laugh. I had a good friend that I have lost touch with that used to sing that song to me. I just want you to know how much we all admire you, Peter and Mattie. You give us all HOPE. You handle every situation so incredibly well. Without even realizing it, you have taught us all some powerful lessons about life and Motherhood. It is no wonder Mattie is such an amazing child. In catching up with the blog tonight, I also realized how much I missed Mattie’s smile. It makes my night!"

The second e-mail I received was from Charlie. I hope you enjoy the "I Believe" poem as much as I do!

I Believe... That just because two people argue, doesn't mean they don't love each other. And just because they don't argue, doesn't mean they do love each other.

I Believe...That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I Believe....That we don't have to change friends if we understand that friends change.

I Believe...That no matter how good a friend is, they're going to hurt you everyonce in a while and you must forgive them for that.

I Believe...That true friendship continues to grow, even over the longest distance. Same goes for true love.

I Believe... That you can do something in an instant that will give you heartache for life.

I Believe...That it's taking me a long time to become the person I want to be.

I Believe....That you should always leave loved ones with loving words. It may be the last time you see them.

I Believe... That you can keep going long after you think you can't.

I Believe...That we are responsible for what we do, no matter how we feel.

I Believe....That either you control your attitude or it controls you.

I Believe...That heroes are the people who do what has to be done when it needs tobe done, regardless of the consequences.

I Believe...That money is a lousy way of keeping score.

I Believe...That my best friend and I can do anything, or nothing, and have the besttime.

I Believe...That sometimes the people you expect to kick you When you're down, willbe the ones to help you get back up.

I Believe...That maturity has more to do with what types of experiences you've had,and what you've learned from them.....and less to do with how many birthdays you've celebrated.

I Believe...That it isn't always enough to be forgiven by others. Sometimes, you have to learn to forgive yourself.

I Believe....That no matter how bad your heart is broken the world doesn't stop foryour grief.

I Believe...That our background and circumstances may have influenced who we are,but we are responsible for who we become.

I Believe...That you shouldn't be so eager to find out a secret. It could changeyour life Forever.

I Believe...Two people can look at the exact same thing and see something totally different.

I Believe...That your life can be changed in a matter of hours by people who don't even know you.

I Believe...That even when you think you have no more to give, if a friend cries out to you........you will find the strength to help.

I Believe...That credentials on the wall do not make you a decent human being.

I Believe...That the people you care about most in life are taken from you too soon.

I Believe... The happiest of people don't necessarily have the best of everything; They just make the most of everything. Thank you God for all the wonderful people who help us throughout the journey of life.. Everything happens for a reason... May Angels guard you and guide you.

As I sign off tonight, Mattie watched the movie, "Space Buddies" that Linda gave him. Mattie was very excited to see it, and somehow Linda always knows just the right thing to give Mattie. Mattie has been sick to his stomach tonight. We resorted to giving him 1mg of Ativan at 10pm. I made the mistake of not giving his Vistaril (the antihistamine) prior to chemo. Clearly he does need it, and the Kytril alone is not sufficient enough as an anti-emetic with these powerful chemo drugs. I won't be making that mistake tomorrow night! I have found through all of this, that I occasionally need a little humor. I happen to love this youtube clip entitled, "Mom's Overture!" I saw it last year, and at the time I could relate to it very well. However, this year my mom role is VERY different. Maybe I should consider writing the Cancer Mom Overture! Enjoy!

http://www.youtube.com/watch?v=6tklsWvoYGY

Tuesday, February 3, 2009

Tuesday, February 3, 2009

Quote of the day:
"I value the friend who for me finds time on his calendar, but I cherish thefriend who for me does not consult his calendar." ~ Robert Brault

Charlie wrote, "This seems to reflect the sentiment of the blog; all about time and friendship. Passage of time is such a subjective thing; there are points at which it almost seems to stop and others where we say it flies. And then there are the points where one lives outside of time as others know it. This is where you and Pete seem to be. He has more of an anchor to the daily routine with work but evenfor him the connection is clearly fragile. It is nice to read how people leave their routines or work to connect and spend time with you and/or Mattie. As I said before, the gift of someone's time, truly and completely given is something to be treasured! You've often given that to your students (I was the recipient on more than one occasion) and it is wonderful to see it returned!"



Mattie woke up several times on Monday night to use the bathroom. He is receiving a large quantity of fluids for hydration, so his necessity to jump up every two hours is understandable. But it makes for a very restless night of sleep. This hydration is necessary because Mattie is receiving a fairly high concentration of Etoposide and Ifosfamide, and Ifosfamide in particular needs to be flushed out of the system otherwise it can damage the bladder. Peter did most of the jumping up and down last night with Mattie, which was great for me, but not so good for Peter. Fortunately though Peter was checking on Mattie periodically because he noticed at one point during the night that Mattie’s hydration stopped. Nothing was going through the IV. Peter immediately called the nurse who looked shocked by this news. We have no idea how long Mattie wasn’t receiving fluids for, but I was so happy that Peter caught this problem.

Mattie woke up today in a bad mood. He was grumpy, wasn’t communicating, and worst of all, he told me constantly that he was bored and did not know how to occupy himself. Not the best of circumstances for me to deal with. The one consolation was Tricia was our nurse. Every time Tricia is our nurse, she always starts my day off with a cup of hot tea. It is these simple acts of kindness that mean so much! Mattie bounced around several times today from his room to the childlife playroom. Literally so many times that I lost track. It must have been like watching a tennis match for the nurses. We just kept going back and forth, as if he couldn’t get comfortable being in either place ALL day. We did start off the day in the childlife playroom. Mattie decided to play a board game with me, one I had never heard of. It was about skiing. I was at a total disadvantage, I don’t ski and I never played the game. So it took me a while to figure it out. Even then, the game was frustrating which only further agitated Mattie. While we were playing Julia (a friend and RCC mom) and her daughter, Jaimie visited us. They brought a wonderful lunch and Mattie finished an entire vanilla shake today and all of his chicken. This was excellent news. Thank you Julia for lunch, the fantastic chocolate, and the visit!

Our next visitor to the playroom was Jey. Jey is a CT tech, but better known as Mattie’s ‘big brother.’ Jey helped me downstairs to the clinic. I decided to take Mattie downstairs to the Lombardi Clinic to meet up with Jenny and Jessie for a change of scenery. Jey pushed both Mattie’s wheelchair and the IV pole for me. Which was very thoughtful of him. Jey understands Mattie’s moods and doesn’t get upset or flustered by them.

While Mattie was in the clinic, I ran back up to the PICU to pick up my lunch and bring it to the clinic. While I was in Mattie’s room, Dr. Toretsky came to visit us. He walked downstairs with me to the clinic, and while I had lunch he sat and talked with me. We talked about Mattie’s treatment, the issues I see with Mattie’s left arm and leg, and we also talked about the future. Though we are nowhere close to completion with Mattie’s treatment, I am beginning to see a frightening future ahead. It is a future of constant scans, and waiting on pins and needles for test results. To some extent being hooked up to chemo makes you feel safe. It is safe because you know you are actively fighting the disease. But what happens when the chemo is finished? How do we protect Mattie? It is a question that parents of a child with cancer must ask themselves day in and day out. I just keep telling myself that we learned to deal with our current situation so to some extent I am sure this will be another stage of the coping and adjustment process we will make, but I also know it won’t be easy. It really hit me today, that on July 23, 2008, when Mattie was diagnosed with Osteosarcoma that this was a life-altering day. It signifies the day in which cancer was brought into our lives forever.



Mattie had a good time creating with Jenny and Jessie. Jenny and Jessie have made it their business to locate all available cardboard boxes in the hospital. They know this is one of Mattie’s favorite pass times, painting on a box! After the clinic, we came back upstairs, and Mattie again bounced back and forth to the playroom and his room. He played with Meg for a while and even Mary, a hospital volunteer. But all of his play was short lived. Meg even allowed Mattie to play with a new science kit that came in. The kit contains a microscope and Mattie got to examine insects under the microscope. His favorite! Mattie did some great art projects in the childlife playroom today. He painted a lot of wonderful pictures, such as a fruit scene, a pumpkin, an “abstract” as he calls it, and a landscape scene featuring a round red house. All of these masterpieces are now taped to Mattie’s hospital door and you can see them in the picture below! In addition, Meg helped Mattie make colorful buttons, the type that you can pin onto a shirt. Mattie literally made six buttons and pinned them to his pjs. He also made a button for Peter, myself, and Meg. Then he made two buttons for Linda. Linda is coming back to work on Wednesday after being on leave for a family emergency. We have missed Linda tremendously! I have a feeling Linda will get a kick out of the buttons. One button has a cockroach on it (Mattie’s bug of choice these days) and the other button is pretty, and says “Lovely Linda” on it with a butterfly.

At around 4:30pm, Mattie developed a massive headache and then started to feel nauseous. I took him back to his room, and Tricia (one of Mattie’s favorite nurses) administered him Vistaril. Literally this antihistamine is the miracle drug for Mattie. He has been sleeping soundly since around 6pm. I think today he was wiped out but just couldn’t shut down. It would explain his moodiness, edginess, and in ability to focus on anything.

When Peter got to the hospital tonight, Mattie was already sleeping. I had all the best intentions of writing the blog in peace and then being able to relax. But that wasn’t in the cards for me. I literally went to every location on campus and I couldn’t get my laptop connected to the Internet. This made me a VERY frustrated person. Fortunately the PICU staff allowed us on the computer long enough to post a message on our blog that there wouldn’t be a posting on Tuesday night. I have yet to miss one blog posting since Mattie got sick, and I was livid today that Georgetown’s guest system went down. The irony is the tech folks at Georgetown weren’t even aware of this when Peter called. Fortunately Peter is technologically savvy and straightened this tech person out over the phone, because the tech person was saying the problem was on our end with our computer. Needless to say, this better be corrected by tomorrow. The PICU is full of very upset parents tonight! For many of us, the computer is our connection to the outside world, and with no Internet it further exacerbates an already difficult situation.

The one silver lining in all of this is that Ellen is our nurse tonight. Ellen is a fabulous HEM/ONC nurse and we haven’t seen her in a while. In addition, Mattie has slept through both the infusions of Etoposide and Ifosfamide. So hopefully this will be the start of a good night for us. As we head into Wednesday, I just hope that Mattie wakes up in a happier mood. I felt like he thoroughly wore me out today and we have three more days of infusions to go!

Monday, February 2, 2009

Monday, February 2, 2009

Quote of the day: "There is never enough time to do everything, but there is always enough time to do the most important thing." ~ Brian Tracy

Charlie wrote, "Time is one of the most precious possessions any of us has. I was so impressed with how a number of people stepped up to share their time with Mattie and with you. Giving time is like giving the gift of truly listening or really being in the moment with someone else; so many people do all of those halfheartedly. I think that while Mattie can't verbalize the difference between one and the other, he is certainly aware of it and he responds to people accordingly. It was wonderful to hear that he enjoyed his time at home, hopefully that will be part of an incentive to help him get through the remaining treatments."

Peter stayed with Mattie on Sunday night and said Mattie slept fairly well. But somehow Peter and I couldn't get to bed before 2am. We were trying to accomplish a lot of things before going to the hospital today but it did make it challenging to get up today. Before Peter and I went to bed, we had this profound conversation, well at least it seemed profound to us. Before Mattie developed cancer, time was very important to us but more so for Peter. So much so, that literally we collect clocks in our home. We have a cuckoo clock, a mantle clock, and a banjo clock within feet of each other! But now we both find no need to keep track of time. Many times Peter doesn't even wear a watch. Which if you knew Peter this is a major statement. It is like a baby crawling around without a diaper. I mean it can be done, but the consequences aren't pleasant. However, we both find that time is NOT measured in seconds, minutes, or hours for us anymore. Instead our time is measured in terms of activities or in terms of one chemo treatment to another. Or maybe by one Mattie mood swing to the next. I have no concept many days what month or day of the week it is. In a way it is like that feeling you get when you are on vacation (the ability to split off from the day to day reality and not worry about time and deadlines), except of course this is not a vacation, it is more like a nightmare. In a way not being able to measure our lives by time leaves us feeling like we live in a different time/place continuum. I am not sure I am explaining this well but at 1am, this seemed like a revelation to us.

I was up by 7:30am and once I got up I never stopped moving. I was packing clothes and Mattie snack foods, and cleaning and organizing things. Peter could not get to work as early as he normally does as he had to help me with things this morning and to pack Mattie and things into my car. We arrived at the clinic by 10:45am, and Mattie was greeted by Jenny and Jessie. Mattie came into the clinic in good spirits. He had his blood drawn, was examined by Dr. Synder, and then had the opportunity to do some art projects. Mattie designed eggs out of model magic, he created a house for a model magic spider, and placed Velcro pieces on the spider and the walls of the box so that the spider could climb around the house. However, the very memorable project in the clinic today was when Jenny and Jessie invited Mattie to put his hand print on a plaque that will be placed right by the elevator banks outside the PICU. The plaque will greet all visitors coming into the pediatric area. It was designed by Jenny and Jessie, and I feel it is very special that Mattie has made his personal mark on this plaque. However Mattie did not want to use his hand to make a print. So instead I offered up the idea of using "George," his left foot. The next thing I knew, his sock and shoe had come off and Mattie decided that Jessie should paint his foot with his favorite color. I did not even need to tell Jessie what color that was, she knew it was red. I snapped several pictures of this activity! It was a sight to see.

Left: Jessie is painting Mattie's left foot. Look at his smile!

Right: Jenny is holding Mattie's foot so that Jessie can paint it.

Left: Jenny is helping to stamp Mattie's foot onto the plaque.

Right: This is the plaque that Jenny and Jessie created, and the red foot print by the letter N in Georgetown is Mattie's!

Mattie headed upstairs to the PICU at around 12:30pm. Since I did not bring our things with us, I had nothing to unpack. But Mattie was greeted by Miki, his nurse. Miki helped us get started with the process. She hooked him up to an IV and then we headed off to the childlife playroom. Going to the playroom today was vital. I did not bring any toys or activities for Mattie. I had to think strategically when I came to the hospital today. I knew I could only carry a few things in addition to Mattie, such as the wheelchair (which weighs a ton), his walker, and two bags. That was more than enough to manage physically. Thankfully the playroom was open. Mattie wanted to play the game, Sorry, with me. He loves to see me lose. Fortunately I do not disappoint him. Mind you it isn't on purpose. Then Mattie was greeted by Meg and Laura, Linda's interns. Meg kept Mattie busy with hotwheels and a hotwheels ramp, while I was visited today by a former student of mine, Pam. Pam was my Team Mattie support person today. She brought us a wonderful lunch and dinner. It was so gracious and generous of her. Mattie devoured his happy meal and he loves to collect the happy meal toy, which is a stuffed animal dog from the movie, Hotel for Dogs. Pam kept me company for a while and we chatted about a whole bunch of things. It is funny how I have gone from teaching others to now these same wonderful people are supporting me. It seems like some sort of role reversal. But I am proud of my students and I am grateful for their concern and care for my family. Thank you Pam for such lovely meals!

By 3pm, Mattie was getting his MTP-PE infusion. I notice that vistaril, an antihistamine, administered through Mattie's IV simply knocks him out. Within 30 minutes of its infusion, Mattie must lie down. So Mattie took a nap this afternoon. While Mattie was napping I got a chance to check e-mails and I made a phone call to my mom. She hasn't been feeling well, so I wanted to see how she was doing. Normally I would send her an e-mail, but I bumped into Jeff Turner today. Jeff is the HEM/ONC nurse manager for the PICU. Jeff is a wonderful and compassionate person and nurse manager. He and I occasionally have an opportunity to talk and today he chatted with Pam and I. He was telling us that we should never pass up the chance to call someone, especially our moms and dads, and let them know we are thinking of them. He was telling us how much he misses his mom now, and so he inspired me to find the time today to pick up the phone. It seems like each day there is a life lesson presented to Peter and I, and we have to decide what to do with this new found information.

Mattie also had the opportunity to see Liza today, one of his favorite volunteers. Liza was busy working with a bunch of kids, but as always she made sure she connected with Mattie. I so appreciate her extra efforts. In addition, Mattie was visited by Jey, Mattie's 'big brother.' Jey and his wife just had a baby in January, so he has been gone on paternity leave. This is his first time back since the baby was born. It was wonderful to see Jey. Jey understands Mattie and unlike others who may view Mattie as mean or difficult, Jey accepts that this is a natural emotional process to fighting cancer. Wow, can we clone Jey?! All radiology techs should be so sensitive. I guess what I am trying to impress upon our readers is that walking into Georgetown for us, is like walking into a neighborhood. In six short months, I feel like I know most of the people around me, they look out for us, and try their hardest to make a difficult situation better. In a way, though I do not wish this on anyone, I do wish that everyone could experience the sensitivity and compassion that surrounds me on most days at Georgetown. I believe if our communities had this type of closeness and connections with one another, there would be fewer problems in the world. But I digress.

When Peter arrived tonight, he carried all our boxes and things up to Mattie's room and we organized the room for the week. We all had dinner together, and Mattie ate up a storm, which was wonderful to see. We all watched part of a movie together but Mattie is simply wiped out. In fact, he is sleeping now as I type the blog. Mattie completed his first one hour infusion of Etoposide (E) this afternoon, and then at 7pm, he started his four hour infusion of Ifosfamide (I). Once this infusion is done, he will receive a bladder rescue drug called Mesna. Then we repeat this whole I and E infusion process again tomorrow. I and E is administered five days in a row. There is something disconcerting about I and E. They are both clear fluids and with kytril (an anti-emetic) on board, Mattie appears to have no reactions to these drugs. So at times you can become complacent and forget almost that he is receiving chemo. Of course until you take a CT scan, ecocardiogram, and hearing test and see the ramifications of these chemo cocktails!

I am happy to report that Mattie's white central line (Mattie has a red and white lumen that comprise his central line) has now been unblocked. TPA (Tissue plasminogen activator - a protein used to break down blood clots) was used and within 30 minutes cleared up the problem.

As I sign off for the evening, I want to end with this quote sent to me by our friend, Tad. "Just as despair can come to one only from other human beings, hope, too, can be given to one only by other human beings." ~ Elie Weisel

Thanks to all of you for being our sources of HOPE when we can't find it within ourselves!

Sunday, February 1, 2009

Sunday, February 1, 2009


Quote of the day: “This very moment is a seed from which the flowers of tomorrow's happiness grow." ~ Margaret Lindsey



Charlie wrote, "I think the blog took me to flowers with the picture of Mattie holding up the flower he made for you. Somehow the image that comes to mind right now is Mattie as a bulb, unseen, full of life, waiting for the spring and his opportunity to once again show us who he is. These glimpses are like the false spring thaws we have here in Virginia, you see the green from your daffodils peek above the ground (and you know your bulbs are alive there) but they stop growing and wait every time the weather changes back to winter. So it seems to be with Mattie, in the hospital, a kind of holding pattern waiting for the chance to be home for an extended period and show once again that the wonderful spirit is waiting for an opportunity to reemerge. Keep the flame of hope alive, Mattie's spirit is there and just waiting for an opportunity to start growing again."



Peter stayed with Mattie last night so that I could get some rest. However, I did not have a restful night of sleep for some reason. When Mattie got up this morning, I cleaned him up and dressed him for the day since he had a visitor coming over in the afternoon. Mattie spent the morning doing puzzles and building with Peter. I went out this afternoon with two friends I hadn't seen in a long time. It was lovely to go out to lunch and to be able to sit and chat like an adult. One of my friends made Mattie homemade marshmallows, which Mattie thought were great along with moon shaped cookies. I also received the book, Living with childhood cancer, today which I plan on reading. It was the first weekend that Peter and I split up parenting duty. I decided to take a break this afternoon, since Peter was invited to go out to see the Super Bowl with our neighbor, JP. This actually worked out well.

At around 2:15pm, Louise (who is a senior at SSSAS), came over to spend some time with Mattie. Louise met Mattie at the hospital last week, and she and her sister hit it off with Mattie. Mattie was happy to spend this time with Louise, and Mattie told me they did a lot of fun things together like playing with his trains, legos, looking at seashells, puzzles, and even helping Peter finally take down our Christmas light display outside! It was a very productive visit, and Peter was even able to run out and do some chores while Louise was with Mattie. Louise had a busy weekend between her school's formal on saturday and a squash tournament today, yet she volunteered to help us. I was very impressed with her generosity of time and her mature priorities. After all, she could have spent her time this afternoon doing anything she wanted to do, but I think it says volumes about her that she took this opportunity to get to know Mattie better.

When I got back from lunch today, Mattie was saying good bye to Louise. I then helped Mattie get ready for his playdate with Charlotte. Ellen and Jeff, Charlotte's parents, invited us over their house this evening for dinner. Mattie and Charlotte had a great time together. Charlotte has a contagious laugh, and hearing that sound is good medicine. Ellen served us a fabulous dinner, which I told her needs to go into Mattie's recipe book that Liza May is assembling. It was a pleasure to see Mattie eating broccoli and sitting at a table and conversing. It was a special treat for us to eat in a dining room, with a family (Tyler, Charlotte's brother was home too, and as many of you know Tyler has put extraordinary effort into Mattie fundraising activities), and having a home cooked meal. It made us feel normal. After dinner, we all played a card game called, Apples to Apples. I heard of this game from my niece, but never actually played it. We all had a good time, and Mattie and Charlotte played together as a team against the rest of us. Mattie had a good time climbing up and down Charlotte's staircase. I guess when there is a will there is a way. Mattie crawled up and down on his rump, and you should have seen him moving. Charlotte was a good motivator. At around 8:30pm, Mattie just announced he was tired and wanted to go home, but he told Ellen that he would play with Charlotte anytime. I could tell that Mattie had a good time at Charlotte's tonight!

When we got home, we checked in with Peter. He was enjoying his break watching the Super Bowl. Peter rarely takes any personal time, so I was thrilled that JP invited Peter out and that Peter actually went. For all our Pittsburgh Steeler fans, it must have been a great night for you! I knew when the Super Bowl was over tonight, because my neighbors next door were screaming with excitement!

Tonight, Mattie and I played three rounds of the game, Sorry. He was thrilled that he beat me three times. I am not even trying to lose, he just seems to win! When Peter came back tonight, we both changed Mattie's central line dressing, and cleaned him up for his hospital admission tomorrow. I noticed while trying to flush his lines that one is completely blocked. So we have to address this issue tomorrow at the hospital. I always get nervous when one of these crucial lines gets blocked up, since this is how Mattie's medicines and chemos are administered.

Mattie opened up a special package he received in the mail yesterday. The package was from Mrs. Fischer. Mrs. Fischer is my dear friend Karen's mom. When I met Karen I was only 11, and so therefore, her mom will always be Mrs. Fischer to me. She sent Mattie an INCREDIBLE book. I have never seen a book like it. It is a pop up book with the title, Birdscapes. Bascially each page has a different bird habitat, the birds pop up, and you can also hear the calls that each of the birds make. It is a wonderful book for Mattie because he simply loves looking and hearing the birds. This is a book we will really cherish!

As I sign off for the evening, we are preparing to go back to the hospital tomorrow. This routine is getting wearing! Mattie will be in the hospital monday through friday, because Ifosfamide and Etoposide are administered five days in a row, and of course we still need MTP-PE on monday and thursday. Wish us luck!