Saturday, January 31, 2009

Saturday, January 31, 2009

Quote of the day: "If you see a whole thing - it seems that it's always beautiful. Planets, lives.... But close up a world's all dirt and rocks. And day to day, life's a hard job, you get tired, you lose the pattern." ~ Ursula K. LeGuin

Charlie wrote, "This is the quote that struck me today after reading the blog. Why? Because while Mattie's journey from illness back to health is overall a beautiful one, to see the return of his smile and enjoyment in life, day to day it is very messy and very difficult. It is hard to keep the focus on the end, on the completion of the project that we know will be so beautiful when you have to deal with the day to day difficulties compounded by the rules of an established bureaucracy. I think of an artist's studio, paints and drop cloths everywhere, the pallet covered in splotches of color, the canvas partially completed with a hint of what is to be. Then turn the calendar a few months and the scene is totally different, the room is cleared and on the easel resides a masterpiece with few clues to what efforts it took to put it together."

Mattie had a rough night of sleep on friday. He was up a lot with nightmares. At one point in the night he woke up and he was disoriented and he did not know where he was. To make a long story short, I had trouble waking up this morning. I stayed in Mattie's room with him last night, and let Peter get another night of rest. I think working full time and working around the clock at the hospital is just too much for one person to handle. Mattie had two visitors coming this morning, and I insisted he get cleaned up and dressed today. He agreed and cooperated! I noticed this morning that Mattie's left arm has rotated in the L position for the third time. I am concerned about this because basically Mattie is unable to effectively use his left arm. So this morning I sent Dr. Bob an e-mail because I continue to grow concerned by Mattie's arm, and I am looking to Bob for his good counsel. Bob responded back right away with some suggestions and he is giving Mattie's situation further thought because the ultimate way of fixing the arm (surgery) can not be accomplished right now.

At 11am, Caroline Eaton, Mattie's piano teacher, came over to visit with Mattie. Mattie was in good spirits and chatted with Caroline and they had fun looking at the birds who were eating at our bird feeder. Our bird feeder is a study of nature in operation. We have pigeons, sparrows, red headed finches, and others who come and visit. There is a definite pecking order as to who gets to eat first, and who can be on the feeder at one time. Mattie finds this fascinating to watch and to provide commentary on his observations. Mattie and Caroline had fun talking about the Lion King, and they even played a song to two from the Lion King music book that Mattie's Grandma sent him. One of Mattie's favorite songs from the Lion King is, "I just can't wait to be king." Caroline also noticed Mattie's attitude change and slowly we are seeing glimpses of the old Mattie resurfacing. Thanks Caroline for a nice morning. While Caroline was working with Mattie, I had the chance to actually make a phone call and connect with my mom. Talking on the phone these days is next to impossible.

This afternoon, Mattie was also visited by Julie. Julie was Mattie's babysitter for two years while she was an undergraduate at the George Washington University. Julie and Mattie had a special rapport, and we were saddened when Julie relocated to NYC. Julie spent the afternoon with Mattie, while Peter and I were able to get out and have a peaceful lunch together. It is in quiet moments like this that Peter and I catch up on things and actually get a chance to communicate with each other. Today's lunch we talked about a lot of things and also did mock up drawings of the osteosarcoma stamp we would like to create, as well as the t-shirt design for Mattie's walk-a-thon. The irony is we were so certain the t-shirt was going to look one way, focusing upon the colors of Dunkin Donuts (one of Mattie's favorite treats), but after brainstorming the t-shirt this afternoon, we changed the design altogether. Team Mattie is going to love us! But we felt it was important to capture the theme of HOPE (our motto right from the start, thanks to Alison for introducing this powerful word to me through her necklace). To us, HOPE is especially symbolized through Mattie's "Mr. Sun" painting. So we are determined to incorporate Mattie's Sun into the shirt design.

Julie and Mattie had a busy afternoon together playing with legos and building puzzles. Mattie reassembled his world puzzle for Julie and you can see he is on top of the world today!

It was wonderful to see Mattie interacting with Julie. They seemed to pick up with their friendship just where they left off, and they haven't seen each other for almost a year. Before Julie left today, I took a picture of this two some. Thank you Julie for this break and for all the goodies you brought Mattie.

Mattie, Peter, and I watched several Wallace and Gromit videos today. Mattie enjoyed them, as we suspected he would. The claymation done by the Aardman Animations studios is wonderful, and the faces of the characters have a way of grabbing the attention of young and old. In between watching the videos, I was dealing with laundry. Once the laundry was done, we started eating dinner. The Harding family provided us with a lovely dinner. Mattie loved the pizza and the shrimp! However, despite eating dinner, Mattie was upset. I think he was really upset by the fact that Peter and I went out to lunch today, and he did not get to join us. In addition to that, I think he has been couped up for two days at home, and he wanted to get out. So he insisted that he wanted to go out to dinner tonight. Mind you, I had changed for the day, and was in my comfy clothes and was ready to wind down. But I could tell Mattie was getting stir crazy at home. So Peter and I got dressed up again, and we bundled Mattie up and wheeled him to our neighborhood chinese food restaurant, The Magic Gourd. The Magic Gourd is a Foggybottom landmark, and we have known the owner for years. When we entered the restaurant, Frank, the owner was thrilled to see Mattie. He and his family couldn't do enough for us. Mattie had an order of coconut shrimp, and because he already ate dinner, he really couldn't eat more than one shrimp, but I think what he really was craving was leaving the house, being around other people, and doing normal things like we used to do. Mattie was playing at the table and was very animated. I snapped a picture of his flower creation he made for me at the table. I thought the creation was sweet, and Mattie's face was darling. Peter then snapped a picture of Mattie and I together. It is funny, when I saw tonight's picture, not only did I notice how tired I look, but more importantly I saw that Mattie looks just like me. People comment about this all the time, but something about tonight's picture just spoke to me. Not only do we physically look alike, but Mattie and I are also a lot alike in personality!

Peter was laughing at Mattie and I tonight and he says he feels sorry for any girl Mattie dates, mostly because Mattie and I have a very close relationship. Though I laughed, in all reality I told him I couldn't think that far into the future. At the moment, I take all the hugs and kisses Mattie wants to dole out!

It was a nice family night out, and I was so happy Mattie suggested it once we got our act in gear. We needed this good time together doing things we used to do. Before our outting was over, I snapped a picture of my two guys, to capture this special moment.

As I write this blog tonight, Peter and Mattie are watching the Lion King movie. I can't get over how similar the play is to the movie. Mattie is glued to the movie and is enjoying the music. I end tonight by telling you about a special letter I received in the mail today from the Caribbean Conservation Corporation (CCC), the organization that helps protect Roxana (Mattie's sea turtle). Rocio Johnson from CCC has been incredibly supportive of Mattie. She sent Mattie a Christmas gift, and even helped to write a newsletter article about Mattie for the CCC organization. However, Rocio also helped Mattie's story reach beyond her membership. She wrote a lovely article for the Brevard County Woman Newspaper (The #1 woman's eduational newspaper in Brevard County, FL.). Rocio sent me the newspaper today featuring the article. I have never met Rocio, but it is acts of kindness like this that I find so incredibly touching.

Friday, January 30, 2009

Friday, January 30, 2009

Quote of the day: "You can learn many things from children. How much patience you have, for instance." ~ Franklin P. Jones

Charlie wrote this to me today. "Vicki, my first thought on reading the blog was that the social worker would have fit in really well at Sloan Kettering. She certainly did not have any concept of what is required to deal with ill children. Even though it is unfortunate that she is at Georgetown, we can be grateful that she doesn't work with the kids; she works with adults elsewhere in the hospital. Anyway, that segues into my thoughts on it, which is that while "patience is a virtue," it is probably one of the toughest to consistently portray and I simply don't know how you do it. Your exhaustion came through clearly and even with that, you managed not to be rude to the clueless social worker, you got Mattie through another day (explosions and all) and got yourselves ready to come home. I think that is a marvel of achievement. I vow to be more patient with some folks who are simply driving me crazy; you set a high example for us all to live up to."

Mattie actually woke up early today despite going to bed after midnight. By 7am he was stirring. I was too tired to move, so I asked Peter to watch him for a while before he had to leave for work. I stayed in Mattie's room last night with him, so that Peter could try to get some rest. Mattie did not want to get dressed today nor did he want to leave the house. So we stayed at home and did all sorts of activities. I can assure you though that being confined to our home/hospital day in and day out can get very wearing and at times I feel like I am going stir crazy. Most days, I don't have the opportunity for adult conversation or connecting to the real world. It is frustrating and at times depressing.

This morning Mattie and I had the opportunity to work on a beautiful lego set that Peter bought for him. The set, when it was done, made two charming houses. The houses were intricate though, because they had inside details such as a spiral staircase. It took me quite some time to figure out how to help assemble these structures, because to me many of the pieces looked alike, and I have trouble seeing in three dimensions. But we were persistent and successful! Mattie is so pleased that these new buildings could be easily attached to his lego hotel that he received in October from FAO Schwarz, NYC. Mattie added these structures to his train village, and he wanted me to take a picture of the hotel (which is red, with a yellow and white awning) attached to his new buildings.

In the midst of building with Mattie today, I had several e-mail conversations with Mattie's doctors. Not about his medical care, but about the logistics of being admitted to the hospital on monday for chemo. I requested that we be admitted directly to the PICU this coming monday, like we were this week. When you get directly admitted to the hospital it makes life SO much easier for the family. There may be more effort needed on behalf of the hospital staff to accomplish a direct admit, but then again isn't this part of the service they are providing us? If we do not get directly admitted to the hospital, then the following happens. Basically, I would need to take Mattie to the clinic first. They would need to do blood work there, give him a check up, and then wait for the blood test results (which mind you usually takes about two hours to complete all of this) before we can officially be admitted to the hospital. At which point, the clinic then gives me the admissions paperwork which I need to hand carry to the admissions department. There is something so flawed with this process! Though Georgetown sees us practically every week, I still have to pay a visit each time to the admissions department to answer the SAME QUESTIONS and process the same paperwork to be admitted. I swear there has got to be an easier way for us returning customers! Mind you I am usually schlepping Mattie with me from the clinic to the admissions department, and finally to the PICU. By the time all of this is done, I am wiped out, it has been a full day, and Mattie and I have had a full tour of the hospital! So I asked the doctors today if they could make our admissions process easier for us. I requested that all our admissions be direct admits. Well what I considered a simple request (since we have done this before) turned into a big deal. I was quoted hospital policy and worst of all I was given the explanation that a bed might not be ready for Mattie when he arrives because the hospital is at full capacity. So instead of the hospital having to figure this out, it seems much better for them to have a cancer patient just hang out in the clinic and to wear all of us out in the process until a bed opens up. I was livid today, and my e-mails to the medical group were professional but strong. There is so much about fighting cancer that is debilitating, must the experience of how you get into the hospital for treatment add to this burden? Apparently so! Dr. Synder knew I was unhappy and she went the extra mile to contact my patient advocate to help iron out my request with the "powers that be." I still did not get what I requested, but at least someone from admissions will meet me in the clinic so I don't have to trek there on monday. I want you to know I have already addressed this issue in writing with the hospital over a month ago, but so far nothing, not even a response, has been given regarding my request. I can't be the only family member who finds this admission process ineffective, but once I get something in my head, I am persistent. To me, I am not only advocating for our admission, but for the admission process of all chemo patients and their families.

At around noon today, Mattie had a special visitor. Lana, one of his first preschool teachers from RCC, came over and delivered lunch and spent part of the afternoon with us. It really helped to break up the day! Thank you Lana! Mattie showed Lana his trains, his lego buildings, and even had Lana check out the birds that were feeding outside our window. Mattie was proud to show Lana our family of Red Headed Finches! Lana gave Mattie some special gifts. Lana's son, Sean, is a Navy pilot and was stationed in Iraq for many months. Sean gave Mattie his patches that he wore on his uniform. I think this gesture is so meaningful, generous, and inspirational. I have great respect for members of our troops, and we are honored to have these patches. One of the patches has half of the American flag on it and the other half of the patch has the Iraqi flag on it. Lana also let me know that the owner of the Dairy Godmother, a well loved ice cream parlor in Alexandria, VA, reads Mattie's blog. The Dairy Godmother herself sent along a magic wand for Mattie to have along with a some vanilla ice cream. Tonight, I snapped a picture of all these special gifts, Mattie eating the ice cream, holding the wand, and wearing Sean's patches. It can't get better than that!

Thank you Lana for the puzzle and for the travel sized version of the game Sorry. This is one of Mattie's favorite games. Also thank you for a wonderful lunch! I loved the salad (that chicken recipe should go into Mattie's cookbook) and the olives!!! and Mattie ate a whole bowl full of the mac and cheese you made him. Thank you for all the goodies and most of all the company! Mattie also wanted to surprise Lana today by assembling a large puzzle of the world by himself. So Lana and I went downstairs to talk, and then Mattie called us upstairs when he was done. He did a great job with the puzzle! It was wonderful that he played by himself for a little while, this is a skill which we are trying to get him to relearn.

Mattie also had a visit today from JJ (our resident Jack Russell Terrier). JJ was very interested in Mattie's lego creations and puzzles and if JJ could use his paws like thumbs, I think he would be building right along side Mattie. JP, JJ's owner, brought Mattie some wonderful pasta today with shrimp and a pizza. So Mattie had a great eating day. Which is excellent, because we want to keep his weigh steady!

Mattie also opened two packages today. His feline friend, Brian Boru sent along a train that Mattie loves and has already added it to his train scene. Mattie also liked the magic trick book. Mattie's Grandma and Grandad in Boston sent him homemade gingerbread cookies, which are one of Mattie's favorites. The cookies were in the shapes of a gingerbread boy, cat, and bunny and some of the cookies had a big M on them for Mattie. He liked that part. Mattie selected a cat to eat and devoured it. I took a picture of him with his cookie selection! Mattie also loved all the other gifts that were included with the cookies, and we look forward to putting the puzzle together and learning some magic card tricks!

Mattie and I spent the afternoon working on a 500 piece puzzle, building, chatting, and playing games. When 5pm hit today, I needed a break, and Mattie decided to watch the movie, Snow Buddies. He enjoyed that a lot. When Peter got home tonight we all had a nice dinner together thanks to the Strombus family. Mattie loved the ravolis and of course, the chocolate dessert is helping me function enough to write the blog. I am not sure if there is a technical addiction to chocolate, but if so, I freely admit I have a problem.

After dinner, Peter sat with Mattie and watched a cartoon or two, but then Mattie started getting tired at 9pm. Totally unheard of! Mattie is now sleeping! As I sign off for the evening, I am happy to report that Mattie has another fun weekend in store for him. He has a piano lesson tomorrow morning and then one of his former babysitters, Julie, who moved to NY is coming over to visit with him so Peter and I can have a couple of hours in the afternoon to ourselves. Peter and I are exhausted and it is our hope to gain back some energy this weekend in order to survive another long week at the hospital. Though in all reality, I think our level of exhaustion is so profound, it may take many months to recuperate.

Thursday, January 29, 2009

Thursday, January 29, 2009

Quote of the day: “Each time we face our fear, we gain strength, courage, and confidence in the doing.." ~ Anonymous

Charlie wrote, "What I read in the blog was all about facing fears, fear of failure, fear of dying, fear of loss. I appreciated your posting of Julie's email because I think it is what so many of us feel; how could any of us feel we have the right to give up when you, Mattie and Pete face the situation you do daily. Fear of loss and of failure is something we all have to face if we are to be successful in our lives, yet it seems like the easy thing to do is to hide and give up without trying. When you show us daily what you face, it gives us all the courage to continue. The blog has another lesson and that is to face one's fears like a child, do what you need to do while thinking of what you like to do (i.e. when you are afraid to stand and walk-sing and skip! or be joyful) and give over your fears to someone else to manage (friends, therapist, God). Thank you Mattie, Vicki, and Peter for this important lesson."



Today was a LONG, LONG day! Mattie woke up at 2:30am and had to desperately go to the bathroom and neither Peter nor I moved fast enough to capture his contribution. So Mattie had an accident. Peter and I scrambled to clean Mattie and the bed. This was a jolt to one's body at that hour. Of course, during the work week, Peter and I are up super early, usually by 6:30am, so neither one of us got much sleep last night. I continue to be in amazement with how we function, and I am blown away that Peter can actually work. Some days we both feel so fatigued that I just want to sit and cry. But what purpose would that serve?!

Mattie woke up at 10am, and soon there after Dr. Matt came to check up on Mattie. Matt spoke with me and wanted to know how I felt things were going. I feel that Mattie's anxiety is pretty much eliminated, and his bouts of depression are not far behind. Dr. Matt was also in agreement with these observations and we feel that Mattie is on the right track with Anna as well. Mattie will continue taking depression medication for another month or so. However, Dr. Matt wanted to know when the last time was that I left the hospital and got some fresh air. I told him I hadn't left the hospital since we entered it on Monday. At which point he asked if I would take a 45 minute break. I told him it wasn't a question of not wanting to take a break, but who would watch Mattie? Who would he be comfortable with? So Dr. Matt spoke to Meg, Linda's intern, and Meg agreed to watch Mattie for 45 minutes. That unfortunately did not last long, because Meg had to escort the music volunteer around the floor today, but fortunate for me, Jessie came up from the clinic and helped me out, so that I could take a walk and leave the PICU. With Linda gone this week, I am hesitant to take breaks. I think Linda's interns are trying very hard, but there is a level of comfort I have when Linda is on the scene. It was lovely to walk outside for a few minutes today and to see students and others living their daily lives. It is almost like I step in and out of a time warp each time I leave the hospital and then re-enter it! The world around me is revolving, and yet for me it is all standing still. Nothing else around me matters but what is going on with Mattie and my world in the PICU.

I had the opportunity to sit in the playroom this morning with Mattie, while he was playing cars. There was a woman in the room that I did not recognize, but quickly assessed she was a social worker. She did not work on our floor, but was from a different segment of the hospital. She apparently comes to hang out in the playroom sometimes when she needs her spirits lifted. She decided to help Laura (Linda's intern) with cleaning some of the toys and while cleaning she was observing Mattie (off the clock if you will), which irritated me to no end. Her whole conversation was about herself! She mentioned how hard her job is and how easy child life professionals have it, because most kids want to interact with the childlife folks. I told her that she did not see the big picture, and that childlife people work very hard, and the kids like them because they work constantly to build that rapport. This social worker went on to observe that Mattie was being spoiled by the childlife interns, because they were giving Mattie a toy he wanted in the playroom. She said her job would be to discuss with the child why he/she shouldn't get that toy. On behalf of ALL mental health professionals out there, I wanted to strangle this woman. She was judgmental, condescending, insensitive to her environment and who she was talking to, and totally out of line. She just kept complaining about her work, and the difficult things she sees on a daily basis. I frankly wanted to show her a picture of my life, so that she really had something of substance to complain about. Fortunately she left the room, because if she did not, I would have.

Mattie got to interact with our favorite Story Lady, Sally today. Sally was dressed as a beautiful snow queen. Though Mattie did not want to hear her stories, he did land up chatting with Sally and he showed Sally the kazoo he got from the music man who also visited today. Mattie loves the kazoo and played Beethoven's "Ode to Joy" on it. It was a riot. Sally and I were humming along. It was a sight. Then Mattie began to tell Sally and I about a song the music man taught him. I asked him what it was about. He said it was about spaghetti and a meatball. I knew immediately what song he was referring to. It brought back memories for me, since I sang "The Spaghetti Song" as a kid (you know, on top of spaghetti, all covered in cheese....). Mattie, Sally, and I had fun singing this song together. In fact, the music man came back into the playroom later in the day, to see Mattie because he told me how much fun he had with him. The music man played the Spaghetti Song on his guitar for us and Mattie was laughing!

Mattie had a good time with Jessie too and they designed a little aquarium with pebbles and even a goldfish which looks quite real. Mattie is proud of this creation. Mattie and I had a nice lunch, thanks to Danelle. She brought us some wonderful foods from the California Pizza Kitchen. Thank you so much Danelle! While we were eating, a mom from the PICU came to visit with me in the playroom. Some of you may recall this mom, I mentioned her daughter was quite sick and on life support a while back. Her daughter is doing a bit better now, but I helped connect her to her patient advocate since she was having trouble navigating the hospital system. This mom came into the playroom to chat while Mattie was playing with Meg. We were having a nice conversation, but the fact that I diverted my attention away from Mattie, bothered him tremendously. It was like a volcano erupted, all of a sudden, Mattie blew up. He cried, was kicking, looked anxious, and started screaming at the other mom. He told her she was giving him a headache and that she was taking me away from him. He then told her the playroom is for kids, not for adults to talk. I attempted to correct him, to try to reason with him, but then I stopped. I had lost him, he was too hysterical. I remember these days dealing with toddler tantrums, and basically you just have to stop talking, and help reset the child before you can accomplish anything. Despite all of that, I did not want the mom to leave the room. She had every right to be in the room, so I told Mattie if he couldn't pull it together, he was going to have to leave the room and go back to his room. This is what eventually happened. We spent the rest of the afternoon in his room, alone. Moments like this just further exhaust me!

Mattie received MTP-PE today at 2:30pm, and his premedication with Vistaril (an antihistamine) seemed to knock him out. He fell asleep pretty soon after the administration, but it is hard to tell whether the tantrum knocked him out or the Vistaril. Needless to say he slept several hours this afternoon, which isn't good news for tonight. He handled the MTP-PE administration well, and he tolerated the Methotrexate infusion this week beautifully. No nausea or other side effects that we could see and I learned at 5pm today that Mattie's methotrexate level was .11, and he was ready to go home (a day earlier than his normal cycle with Methotrexate). While Mattie was sleeping this afternoon, we had a visit from Ashley and her son, Sam. Mattie and Sam went to RCC together and many of you know Ashley from the prayer service she hosted for Mattie in the fall. Ashley was very supportive today and I could see aspects of what I report in the blog impact her greatly. The power of the written word is a force I have always appreciated, but even more so now. Thank you Ashley for bringing Sam to the hospital and I am sorry the playdate did not work out.

After Ashley left, I had a knock at my door. I forget completely that Liz, an artist who creates silhouettes of your child's profile was coming today. It wasn't the best time for her to visit. Mattie was sleeping, slumped over, and she couldn't really see his profile. The lighting in the room was dark, and I felt tired, and stressed out because I knew I needed to find the energy to pack up the room. Ideally it would have been nice to pack up the room while Mattie was sleeping. But I also knew that this woman doesn't come to the hospital often, and she made the trip especially to see Mattie. So I decided to let her in. At first I was simply annoyed by her presence, because I just wanted a minute not to do anything, but then I regrouped and started asking her about herself. I began to learn all about her life, and the fact is she is a nurse who works with a very challenging population in DC, but she does silhouetting on the side. She is also gifted with creating poetry. She wrote a poem for me about Hope in less than three minutes. Here it is:
Hope is soft yellow light,
Breaking on a safe shore
A dawn, drawing in emotion,
Shining encouragement,
Forming a bridge to believe....

It turns out Liz and I had a good time chatting and she will be back next week to visit me. She has also been asked to serve on a project that the hospital is doing, which is to survey patients and their families about what our hopes and dreams are for the hospital. In essence what things could use improvement. Well I was on a roll tonight, and gave her quite a list. I told her to come back next week, and I probably could fill up another sheet of paper! In any case, Liz did create a silhouette of Mattie, but I am not sure it actually looks like him. In her defense the room was dark and he was slumped over. It is my hope that she may be open to doing another one. I will have to talk with Linda about this.

After Liz left, Peter arrived and together we packed up the room. What an ordeal! Peter and I are thrilled to be out of the hospital tonight, and to be able to lock our door! We are experimenting this weekend. We are not giving Mattie IV hydration. We want to see how his electrolytes are affected by this decision (this decision was made in consultation with the doctors). If we can avoid IV hydration at night, I am all for it, since the periodic nightly bathroom calls are wearing. We shall see how that goes.

We want to thank the Goff Glennon family tonight for a wonderful dinner. I loved the eggplant, one of my favorite vegetables, and Mattie loved the pasta. The chocolate cake is keeping me awake long enough to write this blog. Since I literally fell asleep twice while writing tonight. As I sign off for the evening, Peter and Mattie are building Legos downstairs, and soon I have to break it to Mattie that we must wind down for the night. As Friday rolls around, I need to figure out how I will occupy Mattie all day. There are some days, I wish I could bring Linda, Jenny, and Jessie home with me for the sheer pleasure of having stimulating diversions for Mattie!

Wednesday, January 28, 2009

Wednesday, January 28, 2009

Quote of the day:

"It is only when we silent the blaring sounds of our daily existence that we can finally hear the whispers of truth that life reveals to us, as it stands knocking on the doorsteps of our hearts." ~K.T. Jong

Charlie wrote this to me today. "So many of us forget about what is really important as we rush off from one deadline to another, one meeting to the next and then sit down at the end of the day or fall exausted into bed and wonder what in the world we've accomplished at all. There is the story that cycles through periodically that says with great wisdom when we are dying we won't say, "I wish I had spent more time at work but I do wish I had spent more time with my children or my spouse or my friends." I might wish I had done more traveling but I won't wish I spent more time in meetings. As difficult as it is, you are doing what is really important right now, supporting Mattie so that he can continue to grow and flourish as a person. As I've said so many times before, I don't know where you and Pete find the energy to do that virtually round the clock; although we all read about it, none of us are suffering the sense of exhaustion that you clearly are."

Today was a busy day. Just non-stop activities. I am happy that Mattie had such a busy day, but I have trouble balancing anything else while meeting his needs. I basically woke Mattie up today at 10am. I did this because he had a physical therapy session at 10:30am, and I wanted him to get up and have breakfast first, so that he would be ready for Anna. Meg came to greet Mattie this morning. Meg is an intern of Linda's. Meg and Mattie click VERY well together. Mattie was excited to see Meg, so much so that he decided to get into his wheelchair and head to the playroom. I brought his breakfast to the playroom and we played some games before Anna came for a visit. I played "Spill the beans" with Mattie, and lost EVERY single time! He loved it!

Anna came prepared today with a great activity to get Mattie up and moving. She brought around 20 large plastic tubes today that could be pulled open like an accordian. Mattie used his hands and arms to extend open each of these tubes. Then Mattie and Anna joined the tubes together. It was a sight to see. The final tube was incredibly long and extended down the entire hallway. Anna then tied the long tube to Mattie's walker, and Mattie started walking with the tube behind him. He thought it was a riot. It looked like he had an extremely long tail. Several people came out to observe this activity. In addition, Dr. Matt joined in and started playing a telephone game with Mattie using the tube. He was at one end of the tube, and Mattie was at the other and they started whispering through the tube at each other. They told jokes and stories and so forth. It was very clever. The tubes got him up and walking. It was very clever, through play, Mattie forgets what he is doing and he is more apt to try moving his body. I snapped some pictures of this tube train!

Left: Mattie, walking down the hallway with Anna and his long tail! You can see Katie, one of Mattie's nurses standing in the doorway of the PICU watching Mattie's progress.

Right: Mattie is walking straight on, no crab walking here! Anna is trailing after him with the IV pole, and Dr. Matt is holding the other end of the tube in the far right hand side of the picture.

Left: Jenny, Dr. Matt, Anna, and myself were working with Mattie to roll beads through the inside of the tube. Mattie had to walk and follow the beads moving through the tube. It was very clever!

Right: Katie, one of Mattie's great Hem/Onc nurses, is holding the end of the tube with Mattie, while Dr. Matt is on the other end of the tube relaying a joke through the tube. You can see Anna laughing from the joke!

Mattie had a very productive PT session today and Anna is working super hard at developing a rapport with Mattie. This rapport is crucial to accomplishing anything of significance with Mattie. After the PT session was over, Anna, Dr. Matt, and I went back to his room. At which point, Mattie asked Anna and I to leave, because Mattie had something planned that he wanted to do with Dr. Matt. When I was invited back in the room, Mattie had planned to tape the long connected tubes close to his ceiling. So literally picture a tube system around the perimeter of our ceiling. Now you may be asking yourself, what on earth is this for? Well Mattie created a habitrail (or a plastic tubing system for something to crawl around in) for his pretend cockroaches. He thinks it is wonderful, and I think it is gross, even if it is for pretend. Well Dr. Matt used this activity to talk to Mattie about fears and how to deal with fears. Of course Mattie knows I highly dislike cockroaches and the nurses and Anna share my sentiments. So Dr. Matt asked Mattie what he could tell us to help reduce our tension associated with coming into his room filled with a habitrail of cockroaches. So in essence they tried to talk about coping mechnisms today and of course the underlying theme in all of Mattie's sessions, which is how to feel safe and secure.

After these sessions, Mattie and I headed back to the playroom. Mattie started to paint a box to house his octopus and lizard. While we were painting, we had a visit from Alissa. Alissa is a former student of mine. She brought us a wonderful lunch and Mattie ate his happy meal and loves the kaleidoscope Alissa gave him. Alissa brought us some sweet treats too, which we appreciated. Thank you Alissa for supporting us today and coming out in the cold and the ice!

Jessie came up from the clinic today to play with the children on the floor. She came into the playroom and did some clay activities with Mattie and another little boy. Mattie played very well with this little fellow, who is three years old. I was proud to see him interacting with others much better today. Mattie had three special visitors today. Louise and Meredith Bentsen came to play with Mattie. Louise is a senior at SSSAS and Meredith is a sophomore at SSSAS. They joined Mattie in the playroom and I sat in the hallway for a while, and enjoyed the tea and cherries that their mom, Tamra brought me. I almost forgot how much I love Earl Grey tea. That is a special treat, not to mention fresh fruit! Louise and Meredith captured Mattie's attention today and they just clicked. I was so happy to see this. Mattie's third visitor today was Charlotte. Charlotte joined Mattie in the playroom, and Louise and Meredith had a good time playing with both of them. When they all came back to Mattie's room, Mattie explained his cockroach habitrail to the ladies. Louise and Meredith were great sports, and really embraced Mattie's curiousity. Experiencing teens like Louise and Meredith is such a pleasure. It gives you hope in the next generation. They are just so refined, down to earth, and supportive of Mattie. I am so impressed that these young ladies gave up some of their time during their day off from school to spend with Mattie.

Charlotte and Mattie had a wonderful time together. They laughed together and enjoyed each others company. Mattie had Charlotte going up and down on his hospital bed, as if it were an elevator. They ended their playdate by having a beautiful star shaped sugar cookie that Ellen brought with her. Ellen, Charlotte's mom, told me a cute story today. Ellen was talking with Charlotte yesterday morning, and Ellen mentioned that she had good news to share with Charlotte. Charlotte immediately jumped to conclusions that the news was about Mattie. She asked her mom whether all of Mattie's bone bugs were gone. I found that story touching and I continue to be in amazement by the bond these young children have together. Thanks Ellen for bringing Charlotte to the hospital today and for all the treats your brought us. I took a picture of this fabulous foursome today!

Front row: Charlotte and Mattie (does he look like he is having fun?!)

Back row: Meredith and Louise

After Charlotte left today, Dr. Bob came to derotate Mattie's left arm. Bob told Mattie that he knows the exact problem with Mattie's arm. He diagnosed him as having chickenarmitis! It was hysterical. Mattie believed this at first. Mattie had 2mgs of Versed today to help him calm down for the procedure. It was wonderful to do this without full sedation. Mattie cried for a few minutes after the rotation process, but Bob diverted Mattie's attention by asking him about his favorite topic, cockroaches. Bob examined Mattie's huge model magic cockroach, and they had a good time scaring me with this thing! Mattie bounced back right away from the procedure, and was ready to go back to the playroom after Bob left. I put the sling right on his arm after the procedure, and Mattie is now wearing it to bed, along with his immobilzer on his right leg. Mattie is dealing with all of this well, and seems to go with the flow.

Mattie spent a great deal of time in the playroom today, and when he went back tonight, he continued to play with his cars. Mattie had a wonderful dinner tonight thanks to the Gehrs' family. Mattie loved the popcorn shrimp! It was a sight to see him eat them. He ate well tonight and we all enjoyed the wonderful foods from the Cheesecake Factory. I loved the laua salad, which made my night. Mattie watched a movie tonight while I was doing laundry and then Peter and I were talking to one of our favorite volunteer duo, Jerry and Nancy. Mattie hasn't wanted to hear music in his room for quite some time. I hope at some point he lets Jerry and Nancy back in, because they are wonderful. Jerry and Nancy have invited me next week to go around the hospital with them to sing. We make a good trio, and I am considering going with them!

As of tonight, Peter has finished a lego set with Mattie, watched an animal planet episode about hippos, and are now doing a puzzle! It is almost midnight, and Mattie is wired and bored, and wants non stop attention. Peter and I are exhausted, but Mattie is still ready to go. Mind you he had an ACTIVE day, but he has no off switch. Before I sign off for the evening, I want to share two e-mails I received today with you. The first e-mail comes from one of Mattie's babysitters, Julie. Julie is a former student of mine and she worked with Mattie for two years. We miss Julie a great deal and I was deeply touched by what she wrote to us today. I am happy Julie is coming into town this weekend and will be seeing Mattie on saturday. Julie wrote, "I don't even know where to begin. I've never been very good at handling the tough situations life throws at you. Even now, I struggle to articulate my feelings about Mattie's sickness and your family's battle to beat the cancer. In my 22 years of life I have never experienced so much loss as I have since I graduated in May. Two close friends of mine passed away over the summer and recently my great uncle died after suffering a stroke 10 years ago that changed his and his wife's life forever.
Even as I write this e-mail I think to myself; Why am I talking about all the loss in my life when Vicki and Peter are going through their own upward battle? The reason I'm telling you this is because over the past seven months your family has given me the strength and hope to move forward with my life. I've found it easy to give up when faced with the hardship of losing a close friend. I've thought things like; Why is the world so unfair or How God could take my friend away who had so much living to do? Each time I falter and feel like giving up, I think of Mattie's strength and persistence to fight cancer. I think out loud, What an amazing boy Vicki and Peter have raised! I look and the pictures of Mattie smiling in New York or making art projects in the hospital. If Mattie, Vicki and Peter can get out of bed everyday and do the things they do then I have to too. If not for me, then for Mattie. Mattie is a fighter and I pray for your family everyday. I pray for Mattie to continue his battle to fight the bone bugs. I pray for Vicki and Peter and am constantly amazed at their ability to handle the dozens to challenges they are faced with each day."

The second e-mail I received was from Margaret, a friend and Mattie's first preschool teacher at RCC. She sent me this lovely poem, which I think is a touching way to end tonight's blog!

AT DAY'S END ~ Adelaide Love

I hold you in my arms before the fire

And tell the fairy tale you love the best,

While winter twilight deepens and the first

White star comes forth to glitter in the west.

So softly do you lie against my heart

I scarcely know if it be child or flower

I cradle, till you stir and draw a breath

Of wonder at the tale, O, blessed hour

That every mother know when at day's end

She holds her little child, a wistful ache

Commingling with her joy, and dreams a dream

For him and breathes a prayer for his dear sake!

Tuesday, January 27, 2009

Tuesday, January 27, 2009




Quote of the day: "To be complete, a healing system must be able to cover the entire field of human experiences-physically, mentally, and spiritually. Any system which denies any part of this trinity fails in its attempt to heal to the same extent to which it denies any part or parts." ~ Stanley Burroughs



Charlie wrote, "Why is it that the patient's needs always seem to be in last place behind the needs of the doctors, nurses, technicians, etc at the hospital? The patient is finally resting after hours of exhausted tossing and turning but blood pressure is taken at 4:30 AM no matter what. Is this really necesary? Is this helping heal the patient or delaying the process? A nurse opens the door and all is dark and quiet in the room, parents and children are sleeping, Let's flip on the light and check the monitors, check IV lines, take temperature and make sure we wake everyone in the process. Then a couple of hours later the child is uncooperative, the parents are short tempered and the staff says, these people don't appreciate what we do for them. What happened to the healing process? It gets hijacked in the name of convenience and routine. If we want to improve medical services and save money by getting people out of the hospital sooner, we need to find ways to help them heal faster, not just move them out early. Ignoring the mind-body-spirit connection is not just wasteful, it is hazardous to a patient (and family's) long term health."


Mattie had a busy monday night. He was up every hour going to the bathroom. Fortunate for me, Peter did all of the jumping up at night. I was too tired to move. I don't know how Peter got up for work this morning and was able to function, but I could write a blog entry on this alone. The complexities of trying to work full-time, to try to stay competitive, and yet be able to support Mattie emotionally is a real balancing act. But it seems to me the work place needs to get a better handle on how to support employees who have ill or impaired family members to care for. Yes I realize that in 1993, Clinton passed the Family and Medical Leave Act, which is a start, but so much more needs to be done. Just like with bereavement issues, I find our work culture makes allowances for a employee for a week or two, but there after, things are expected to go back to normal. If they don't go back to normal for you, well then something is just wrong with you, and you basically become dispensible. I have seen this happen many a time with several of the caregiving clients I have worked with.

This morning, Mattie slept in until 10am. Kathleen, Mattie's nurse, came and chatted with us, and she told me that she attended the music event fundraiser in Old Town for Mattie, while we were away in NY. I was very touched by her attendance and willingness to support Mattie. This only further illustrates the dedication of Mattie's nurses to his treatment and recovery. We learned early in the day that Linda would be away from the rest of the week because she has had a death in her family. We were saddened to hear this, and of course, I know Mattie will really miss Linda this week.

Mattie had a special visitor today. Brandon, his big buddy, came back to the hospital for a check up. So we had the good fortune to catch up with him and his parents. Brandon looked wonderful. Like the picture of health. It is hard to believe he was the same fellow we saw stuck in the hospital back in November. A lot of healing happened for him in just two months. I think life for Brandon is complex. He is 18, and at the moment has No Evidence of Disease (or as the lingo around here goes, NED), but because he had chemo, his immune system is still somewhat compromised and his doctors are recommending that he go to a community college rather than go away to college and stay in a dorm. This has been a blow to an 18 year old, who is fighting for his independence and his ability to explore the world on his own terms. As I was talking to Toni, Brandon's mom, I could also understand her fears. It is very hard to go from dealing with cancer, being stuck in the hospital (and the hospital becomes your new community), to hearing that your son is now cancer free and you no longer need to report to the hospital. To some extent you just can't accept this news, and you are just waiting for the next shoe to drop. I can see why there are support groups for families of survivors of cancer. In fact, I was telling Toni today, that if Mattie ever gets over this, I have no idea what I want to do with my life. Everything that I thought I wanted to do and accomplish now doesn't mean as much to me anymore. Cancer changes your life in a profound way.

Brandon played with Mattie in the childlife room. They played the classic game, "You've got cooties." I snapped a picture of them together (Brandon is holding the cootie that he built). Brandon is such a good sport, and a great big buddy. We really miss him and his family, but we also are thrilled about Brandon's recovery. You may notice that in the picture there is a little boy who has his head on the table. Well this little fellow is Mattie's age, and we have gotten to know his family over the last couple of months. He did not want to be in the picture, but Mattie had a good time playing with this little boy today. They are both spitfires and have a lot of energy. It was nice to see Mattie relating to Brandon and this other boy today. But then again, Brandon has a way for helping Mattie come out of his shell.


Mattie had a physical therapy appointment today at noon. Dr. Matt (psychiatrist) also attended the meeting. Mattie was eager to get out of his room, and he used his walker with Anna to go from his room, into the hallway. But he tired easily and then had to sit on a hallway bench. He then did not want to walk again for the rest of the session. Anna and Dr. Matt got Mattie to use his legs and kick balls and things, but I did not see a lot of walking. Both Anna and Dr. Matt will be working with Mattie again tomorrow morning. It is funny, I was reading a blog maintained by a mom I have befriended in Nevada. Someone posted a comment on this blog. In the posting a mom said it took her child 6 months after chemo was completed to begin walking again, and then an additional 6 months thereafter to walk without a limp. So we are talking about a year's worth of recovery time once chemo is completed. What a time frame! I begin to worry about how Mattie can go back to school, when he still will need further surgeries, will need MTP through September, and he may not even be walking well in September. When all this hits me, I then realize I need to take a step backwards and adopt the one day at a time philosophy. But it is hard not to get carried away with worry and stress over all of this.



Mattie's PT session did not end well. Mattie wanted to go back to his room, and basically asked Anna and Dr. Matt to leave the room. He only wanted me present. He landed up sitting next to me for 20 minutes crying. Before all this transpired, I had a lovely visit from Laurie. Laurie is a lower school mom at SSSAS. Though I knew of Laurie, I never met her personally. Laurie has been very supportive since Mattie was diagnosed and today she brought Mattie and I a wonderful lunch and gifts for Mattie. Mattie ate his happy meal, and he loved the cute cookies. One was in the shape of a VW bug. Mattie will also enjoy building the lego's bionicles. Thank you for the Caryle Grand salad, it is one of my favorites and for the soup, and chocolate goodies. Laurie wrote me a lovely note, and the one positive in all of this is the opportunity to get to know all our wonderful supporters.


Mattie wanted to spend a good portion of his day in his room today, but finally this afternoon he ventured back out and we went to the playroom. We met up with Mary, a volunteer. We met Mary a few months ago but haven't seen her since. Mary is delightful, very good with children, and wants to apply to medical school. She played with Mattie, and then Mattie asked to paint. Mattie painted three wonderful things. One was a picture of a watermelon, the second was a picture of a jack o lantern and the final painting was that of a slice of pizza. Everyone loved his paintings and they are now posted to the outside of his room door. I snapped a picture of the paintings with the artist today.




We want to thank Margaret for a wonderful dinner tonight. Mattie loved the shrimp, the fresh mozzarella cheese, and he even tried a spinach ravoli. We all enjoyed dinner, and the canoli was a special treat! Margaret called us today to check in as well, and it was nice to connect with her, despite Mattie screaming that I should get off the phone. Mattie was excited to see Peter tonight, and Mattie showed him all his paintings and science projects he has around the room. In one container we have a rubber lizard hatching from an egg, and in another container we have an octopus which is growing in size each day (Ann you would be amazed how much bigger your 8 legged friend has gotten this week!).

As I sign off for the evening, Mattie is watching a Scooby Doo and barking out commands left and right at us. I am wiped out dealing with his need for constant attention today and the need to reprimand him. It takes a great deal of effort on my part and Peter's to assure that Mattie has a good and productive day. I always felt when you become a parent, you lose a bit of yourself in the process, but now that we are caring for a child with cancer, it takes the losing yourself to a WHOLE new level.

Monday, January 26, 2009

Monday, January 26, 2009

Quote of the day: "The power of love to change bodies is legendary, built into folklore, common sense, and everyday experience. Love moves the flesh, it pushes matter around.... Throughout history, "tender loving care" has uniformly been recognized as a valuable element in healing." ~ Larry Dossey

Charlie wrote, "I know it seems to you that Mattie is taking a long time to heal but to me it seems nothing short of a miracle. Last summer, the folks at Sloan Kettering were suggesting that you take him home for the time he had left and now, less than a year later, he is up and moving about on his affected leg, using both of his hands and making social and emotional strides that any of us would be proud of. It is due to the ongoing "tender loving care" of you and Pete with the help of the Mattie team and the wonderful staff of Georgetown. The value of love in healing is so obvious to all of us who read the blog; I can't imagine what things would be like without it."


I am just not in my happy place today. When I was getting Mattie dressed this morning, I noticed that his left arm was twisted again in the shape of the letter L. At first I thought he was joking with me, because he was fine all weekend, and in fact, went to bed and was fine. But when I asked him to touch his tummy with his left arm, I could see that he just couldn't do it. So I called Dr. Bob even before I finished packing for the hospital. Bob said that Mattie's arm would need to be derotated again this week. However, I felt the need to know more about this arm and what the future of this arm would look like, so I kept asking Bob questions. In essence the only true way to stabilize Mattie's left arm is to go back and do surgery on it. However, surgery can't be done now until the chemo is completed, which will not be until mid-May (and MTP-PE, which is considered a liposomal antibody, will be completed in September). The reasoning for this is that surgery and recovering from surgery prevents Mattie from being able to receive chemo, which would not be wise at this point in time. The thinking is that Mattie tore through the formed scar tissue in his left arm when he pulled on our hotel blinds in New York City two weeks ago. So naturally I have spent the entire day beating myself up for this, because I should have watched him more carefully in the hotel room, and I should not have allowed him to play around with the blinds. It is a hard call being the mom of a child with cancer. I have the need to protect Mattie, but I also understand he is a curious 6 year old, who likes to know how things work and operate. So I allowed him to explore our hotel room, and to move around in the room, but now I see that if I prevented him from doing some of these things he may not have torn through his scar tissue (which destabilized his arm at the shoulder socket, which is why the prosthetic is rotating). So I have been working through this today, plus the sad fact that Mattie will need further surgery once chemo is completed. I hate to admit it, but the past few days I have been thinking we are on an upswing and that perhaps there would be an end for us soon. Of course I realize this is delusional thinking in a way, because once you have cancer, especially multifocal osteosarcoma, you will always be dealing with cancer. The question is just when! When Mattie's arm rotated again today, it set me back about 10 steps. I just feel in a way defeated, that there is so much out of our control.

I also asked Bob about the reported calcification in Mattie's right arm that showed up on the x-rays last week. The radiology report indicates the calcification and that this could be further evidence of disease. I asked Bob about this, but Bob seems to think the coincidence is too high between the time of surgery and the appearance of the calcification. Despite hearing this, it is still on my radar scope. So it is funny how you can feel somewhat happy and hopeful one day to being right back to square one the next. So sometime this week, Bob is visiting us to derotate Mattie's arm and we are going to attempt to do this without sedation.

Peter helped Mattie and I get to the hospital today. Peter carried all of Mattie's things to his room and then had to go to work. Peter knew I was in a state today, so he really tried to lighten the mood and ease my tensions. Miki was Mattie's nurse and she started MTP-PE at around 1pm. Mattie handled that administration beautifully. Mattie had a ton of visitors today: Linda, Jenny, Jessie, Anna, Meg (Linda's intern), and Liza (one of Mattie's favorite volunteers). Liza and Mattie did many wonderful projects together. The first project was transforming Mattie's room into an archeological dig. We put a sheet down on the floor, and both Mattie and Liza were wearing googles. They were working hard on digging for stegasaurus bones. They were very successful! Liza read to Mattie about dinosaurs as he was digging. Liza and Mattie also played with cars and planes and they had a good time together. As he moved along to legos, he wanted to have some time with just me, and he asked Liza to leave. Liza handled this well, and we are happy that Liza is now volunteering on mondays instead of saturdays.

While Mattie and I were building with Legos, he had a visit from Anna (his PT). Anna paged Linda, and all three of them started playing and Anna had the opportunity to watch Mattie and to try to have him stretch his leg. Anna and I are strategizing ways to straighten Mattie's knee, and for keeping his left arm from rotating. It is my thinking of making Mattie wear a sling to bed for his left arm, and a leg immobilizer at night for his right leg. To me, Mattie's right knee just doesn't look normal, and he has it frozen in a bent position. So I feel the need to take night time measures. Tomorrow, Anna, Linda, and Dr. Matt (Mattie's psychiatrist) are going to work with Mattie on walking and the fears associated behind walking. I am happy that they are all teaming up together.

Later in the afternoon, Mattie had a visit from Jenny and Jessie. Jenny and Jessie are helping me generate ideas for our osteosarcoma stamp. This is a real challenge. There is so much we want the stamp to capture, yet it has to be catchy and simple. Any case, Peter and I are brainstorming ideas. But if our Mattie readers have ideas, please do not hesitate to e-mail them to me or post them on the blog. I would appreciate the insights. Jenny and Jessie googled osteosarcoma today and they couldn't get over how little attention it gets. Which of course is part of the problem! Jenny stayed and worked with Mattie on creating a cardboard house for Mattie's hornet. Mattie made a hornet out of a yellow balloon. Linda gave Mattie a set of balloons today that he can blow up, twist, and transform into animals. Mattie had a good time with Jenny and he even created a marker picture of the hornet on a piece of canvas that he placed in the hornet's house for the hornet to appreciate. Got to love it!

Somehow even with all these lovely ladies who came by to help me with Mattie today, I am still exhausted and we just started methotrexate at 8pm. So the yellow highlighter medicine will infuse for four hours, and then every four hours thereafter we will be capturing urine for Mattie. The problem with methotrexate though is the large amount of fluid that is pumped into Mattie to flush out his system post infusion. It literally leaves Mattie running to the bathroom every hour. So there is no peace this week. At the moment, Peter is working hard on building legos with Mattie. Mattie is relentless. He wants a constant play companion. I am not sure how Peter does it. He works a full day, and then comes from work and works an intense evening at the hospital. When I met with my colleague this weekend, who is a mental health professional, her question to me was when am I planning on breaking down? Don't know, good question! But what scares me with this disease is it too is relentless, and I would love to hope that this is a one shot deal (treatment and then recovery), but I am also a realist. I think the left arm set back today makes me further reflect on the reality of our future.

We want to thank the Bentsen family for a wonderful lunch today. I loved the soup, salad, and chocolates. Mattie ate all his chicken in his happy meal and drank most of his shake. Mattie loved the happy meal toy, because it was a toy from the movie "Hotel for Dogs." The fresh mozzarella was GREATLY appreciated too! You have saved me running around during the week. But what Mattie really loved was the Chinese New Year gift that Tamra enclosed with lunch. There were some plastic fish inside the gift that tell you your fortune. Mattie's fortune revealed that he is passionate, Peter is the same, and apparently I am jealous. Got to love it, certainly there is a lot for me to be jealous about. Perhaps their is a lot of truth from these plastic fortunes. Thanks Tamra for the lovely lipstick holder too.

We want to thank Sara tonight for a lovely dinner. Mattie ate an entire small pizza and we loved the salads and dumplings! Thanks for supporting us. I would like to end tonight's blog with a true story my mom sent me. We all need more Kurtis' in our lives, don't we?!


KURTIS THE STOCK BOY AND BRENDA THE CHECKOUT GIRL


In a supermarket, Kurtis the stock boy, was busily working when a new voice came over the loud speaker asking for a carry out at register 4. Kurtis was almost finished, and wanted to get some fresh air, and decided to answer the call. As he approached the check-out stand a distant smile caught his eye, the new check-out girl was beautiful. She was an older woman (maybe 26, and he was only 22) and he fell in love. Later that day, after his shift was over, he waited by the punch clock to find out her name. She came into the break room, smiled softly at him, took her card and punched out, then left. He looked at her card, BRENDA. He walked out only to see her start walking up the road. Next day, he waited outside as she left the supermarket, and offered her a ride home. He looked harmless enough, and she accepted. When he dropped her off, he asked if maybe he could see her again, outside of work. She simply said it wasn't possible.He pressed and she explained she had two children and she couldn't afford a baby-sitter, so he offered to pay for the baby-sitter. Reluctantly she accepted his offer for a date for the following Saturday. That Saturday night he arrived at her door only to have her tell him that she was unable to go with him. The baby-sitter had called and canceled. To which Kurtis simply said, "Well, let's take the kids with us."She tried to explain that taking the children was not an option, but again not taking no for an answer, he pressed. Finally Brenda, brought him inside to meet her children. She had an older daughter who was just as cute as a bug, Kurtis thought, then Brenda brought out her son, in a wheelchair. He was born a paraplegic with Down Syndrome. Kurtis asked Brenda, "I still don't understand why the kids can'tcome with us?" Brenda was amazed. Most men would run away from a woman with two kids, especially if one had disabilities - just like her first husband and father of her children had done. Kurtis was not ordinary - - - he had a different mindset. That evening Kurtis and Brenda loaded up the kids, went to dinner and the movies. When her son needed anything Kurtis would take care of him. When he needed to use the restroom, he picked him up out of his wheelchair, took him and brought him back. The kids loved Kurtis. At the end of the evening, Brenda knew this was the man she was going to marry and spend the rest of her lifewith. A year later, they were married and Kurtis adopted both of her children. Since then they have added five more kids. So what happened to Kurtis the stock boy and Brenda the check-out girl? Well, Mr. & Mrs. Kurt Warner now live in Phoenix Arizona, where he is currently employed as the quarterback of the National Football League Arizona Cardinals. Is this a surprise ending or could you have guessed that he was not an ordinary person. It should be noted that he also quarterbacked the Rams in Super Bowl XXXVI. He has also been the NLF's Most Valuable Player twice and once the Super Bowl's Most Valuable Player. And, on February 1, 2009 he will lead his Arizona Cardinals into the SUPER BOWL.

Sunday, January 25, 2009

Sunday, January 25, 2009

Quote of the day (thanks Susan S.): "It is not the magnitude of our actions but the amount of love that is put into them that matters." ~ Mother Teresa

We have enjoyed being home the past two days. This morning none of us could get up. Mattie did not stir until 10am. I spent saturday night in Mattie's room, and despite Mattie sleeping through the night, I did not. Something kept waking me up and then I had a hard time falling back alseep. I just felt like I had a lot on my mind. Can't imagine what that could be, right?

We met up with Mattie's friends, Campbell and Livi (Campbell's sister) this afternoon. We all went to see the movie, "Hotel for Dogs." I hear this movie received poor reviews from the critics. Which usually means in my book, that I am probably going to like the movie. Mattie loves dogs and I think he feels this way because of his pal JJ. So when Mattie saw the previews for this movie on TV, he expressed an interest in going to see it. Mattie sat between Campbell and Livi at the theatre and truly enjoyed himself. During parts of the movie he was sitting on the edge of his chair, at other times he was bouncing to the music. Peter and I enjoyed the movie too, and I must admit I am probably the only person who can cry through "Hotel for Dogs," but there were some very touching moments in my perspective. I just liked the moral of the story... that everyone deserves a home, and some times you have to fight for what is right even though it goes against the normal order of things. It was nice that Mattie could go to the movie and also see it with his friends. It made it a good social experience for him.

After the movie, we stopped at the grocery store to pick up some must haves for the hospital this week. Mattie and I stayed in the car, while Peter dealt with what looked like a VERY packed store. While Peter was shopping, Mattie noticed that a child lost his helium balloon. It was flying in the sky. Mattie and I stared at this balloon for several minutes until it went up so high in the sky we lost track of it. Mattie wanted to know what happened to all lost balloons. I told him what I thought, that they probably pop somewhere in the atmosphere and then parts of the balloon come back to the ground. Mattie thought that wasn't the case, and then proceeded to tell me a story about what he thinks happens to all lost balloons. Apparently according to Mattie balloons rise up into space, at which point God captures the balloons and saves them there for when a child is sad and needs to smile. Interesting no? I thought the story was lovely. Mattie also observed several birds hanging out in trees in the parking lot. At which point he told me to call Peter on the phone and remind him to pick up bird seeds for our feeder.

When we got home, Mattie asked us to refill the bird feeder. As soon as we did, our beautiful red headed finch came to visit. It was worth buying the bird seed, just to see this little red fellow. Mattie loves the birds too, and we both like watching them. Some how we could try to manufacture the red color on the finch's feathers, but nothing can beat the beauty of a color produced by nature. Mattie spent the rest of the afternoon building with legos. Believe me, we are keeping Legos in business and with each set that Mattie builds, he adds it to his train scene which is taking up our living room at the moment. Peter assisted Mattie all afternoon, while I was doing laundry and getting ready for another week ahead of us in the hospital. It is funny how walking up and down stairs to do laundry has become my main form of exercise. It is a sad commentary, but hospital living takes its toll out on you physically, because you do not get an opportunity to move around much. You can take this inactivity for a couple of weeks, but after a couple of months, it greatly affects your body.

We want to thank the Cooper's for a lovely dinner tonight. We all enjoyed the chicken, potatoes, and vegetables! While Peter and I were eating, Mattie was busy with his trains. As promised, we took a picture of the final product with the lamps assembled around the tracks. Mattie is so proud of his train village!

Tonight we are preparing Mattie for another hospital admission. He is not happy about this, but we keep reminding him why we need all this medicine. He understands, but none the less it is hard to know you are going back to the hospital after being discharged just a few days ago. Peter and I still have a central line dressing change ahead of us this evening. I would have hoped changing Mattie dressing would be getting easier with time, but it hasn't. We are supposed to change his dressing three times a week, but because this is such a challenging event, we do it only once a week. Fortunately we have been able to keep his dressings clean so he hasn't had a central line infection. Thankfully!

It has been a great weekend for Mattie. He was able to reconnect with his friends and the world around him. In comparison to two months ago, we are happy to see Mattie's psychological, emotional, and social progress.