Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

October 25, 2008

Saturday, October 25, 2008

Saturday, October 25, 2008

Peter gave me the luxury for going home friday night to sleep. It was a glorious feeling. Not hearing monitors going off every couple of minutes, was very welcomed. But I am not sure how to describe how I am feeling. Even though I should be grateful that I did get a night of sleep (and will tonight as well since I am home, and will return to the hospital in the morning), I feel so sleep deprived and have stress in every part of my body, that it is hard to catch up and feel better in one night. Mattie's cancer takes it toll out of Mattie for sure, but it has an impact on Peter and I as well. It is a family disease!

I got to the hospital today around 11:30am, and brought Mattie a happy meal. When I arrived, I found Mattie lying in bed listening to his iPod. Thanks to Peter, we finally are using this wonderful gift that Mattie's kindergarten class gave him. Mattie seems to love it! However, Mattie refused to eat anything until I arrived. Not because he needed me around, but because he will not eat hospital food. It doesn't even matter what they serve him, it isn't going down. So when he saw the happy meal, he started to swallow the food whole. He ate a good lunch and drank an entire vanilla shake. Right after he ate, Peter and I got him out of bed, dressed, and into his wheelchair. Mattie went off Fentenyl (the narcotic he was on) completely this morning at 8am (he does have access to it through the PCA button, so he can get it on demand if he is in pain), and the Bupivicaine (the perineural) was cut in half as well (down to 2mL/hr) and again no pain reported. The residents are also looking for signs of withdrawal from these medications. Mattie wasn't on these powerful drugs long enough, and he shows no signs of this.

Once Mattie was in his wheelchair, we gave Peter a break. Well a break is relative. Peter went to get his haircut and then went to the office, since he is headed for a business trip sunday/monday. So you get the picture, not a break. The first activity Mattie and I did was open a large envelope that Ms. DeLaurentis (Mattie's school counselor at SSSAS) sent Mattie in the mail. Inside the envelope were wonderful halloween cards from Mrs. Flanigan's first grade class. The cards were amazingly creative and adorable. Mattie got a chuckle at looking at each card. They really engaged him, and he loved how every card had gummy bunny snacks attached to it. Thanks also for the great Halloween pencil. On the pencil was attached a joke (Why did the cyclops quit teaching? He had only one pupil!) Mattie loved it. These cards put Mattie in a real good mood, THANK YOU! Then Mattie I moved onto the next activity. My parents gave Mattie a suncatcher set and I brought it to the hospital today. Mattie and I designed some wonderful suncatchers for a couple of hours. Mattie is very clever now. Because he is minus one arm, he uses his mouth when he can. On friday, Jenny and Jessie showed Mattie a book of art creations done by artists using their mouths or feet. These pictures made an impression on Mattie, and he is trying to adapt to what he has. He never ceases to amaze me. After the suncatchers were painted and needed to dry, I pulled out a book that Charlotte gave Mattie, "Around the world in 80 days." Mattie enjoyed this book, and we were able to look at the world map and locate the path Mr. Fogg took on his trip around the world. Mattie said he wanted to do this one day too.

I could tell Mattie was getting stir crazy. Who wouldn't in a 2x4. These rooms could make anyone unstable. So I asked Mattie's nurse if he could go for a walk. Because Mattie's pain meds are practically nil, she accomodated him. Mattie has incredible mood swings these days, and I have found no matter what he throws at me, I stay even keeled and try not to get upset. This seems to really mitigate the intensity of his reactions. Well walking with Mattie is a production, especially when you are doing it by yourself. I had to push his wheelchair, as well as his IV, and hold all of his tubes hanging from the IV pole. You had to see this to believe it. Now really once you get the hang of it, it isn't so hard. But here is the issue. The unit has double doors every 100 feets or so. Major problem, because the doors do not have a button you can push for them to open automatically. So not only did I have to balance Mattie and the IV, but I had to somehow open up four sets of these heavy double doors. By the time I did five laps with Mattie, I felt like I got my exercise for the week. In the age of accomodating people with disabilities, it shocks me that the fifth floor of the hospital doesn't have this type of automation, especially when you have kids confined to wheelchairs on the floor who want to get around.

Mattie then started to get tired, and had to go to the bathroom, so I knew it was time to turn back. There after, my parents arrived and they purchased a halloween video for Mattie and they all watched it together. While they were watching the video, I received a call from Ann. Ann gave me an update on today's Team Mattie bake sale. I am saddened that the Saints team did not win the football game, and also that Team Mattie was stuck outside in the rain. I have no doubt that the weather affected turnout. However, despite the rain, the team kept selling baked products and Junko had a great idea to bring hot chocolate to sell. I am sure that went over big today! Good thinking. Thank you Ann for coordinating this, your energy and determination inspire me! Thank you Danelle for all your assistance and for also taking pictures. I also want to give a special thank you to Vonnique Van Way and Mark Dowling, their son Sean, Tanja Mayer, Carrie (my TA) and Ann Kim (a wonderful student of mine) for their incredible help from start to finish. I thank everyone who participated in the bake sale, it means a great deal to us. Also I want to thank Coach Dave, because I hear a signed photo of the football team is headed our way. Some of you may remember that last week, Mattie and Charlotte went to the upper school and met Coach Dave and the football team. At this visit, I took a picture of the Saints with Mattie. This week, I received a lovely e-mail from Marian (an SSSAS mom) who developed and blew up the picture and Coach Dave helped secure the signatures. What a special gift!

We want to thank the Fergusson family for a tasty dinner tonight. Mattie LOVED the watermelon. Thank you for sharing some treats with us from Mattie's bake sale. That was very thoughtful of you, especially since you were coordinating a birthday party today for your daughter. We look forward to seeing the movie, "Wild." We haven't seen it yet, but I can relate to the plot. Animals who want to escape from the zoo!

On the electronic front, thank you Brian Boru, Susan, and Karen for your wonderful e-cards. As we head into sunday, we are getting ready to be discharged from the hospital. Of course this is a very positive thing, but part of me can't help but worry about how will things progress at home with Mattie, pain wise, and logistically. Mattie hasn't been walking much at the hospital. It appears that a couple of steps wipe him out, so part of me wonders how he will manage at home. But I realize like everything else, I need to take it one day at a time.

October 24, 2008

Friday, October 24, 2008

Friday, October 24, 2008

Quote of the day (Thanks Susan S.!): Life is like a rainbow. You need both the sun and rain to make its colors appear. Your rainbow colors shine brilliantly.

Mattie woke up a couple of times during the night (thursday). He was up from 11pm to 1am, and then was up again at 4am. His 4am awakening was because he was hungry. Can you guess the food he requested? If you guessed potato chips, then you win a prize! This is the food of choice for the week. At 4am, we ran out of potato chips (mind you they have to be plain potato chips and made by Utz). So literally Peter hit every vending machine in the hospital until he hit the mother load of chips. This would be almost hysterically funny, if it wasn't happening to Peter at 4am. I think Peter gets major Daddy points for this potato chip search and rescue operation!

Since Mattie was up for quite a bit during the night, it made sense to me that he did not want to wake up this morning. However, Mattie's PICU nurse kept checking in with me this morning, despite the fact that she knew Mattie was asleep. Her constant checking got to the point that I got worried that something was wrong with Mattie. You know where your mind can run, especially after a major surgery and being on all sorts of pain meds. So I got myself so worked up about this, that I finally went over to Mattie and called his name and rubbed his arm, until he looked at me. Once he acknowledged me, I let him go back to sleep. Eventually Mattie woke up and was hungry. You probably see the trend now, he woke up and wanted his potato chips! While he was eating, Mattie had a visit from Anna. Instead of giving her a hard time, he quickly came to the conclusion that he wanted to get up and walk. Anna, Mattie's nurse, Julia, and I helped Mattie up. However, I noticed once out of bed, Mattie did not want to go out of his room into the hallway. We tried to figure out why. We thought about fear, being tired, in pain, but then it dawned on me. Maybe he did not want to leave the room because his back was exposed, since I can't get his PJ top around his body. He had pants on and his top draped over his front, but he did not want to go out the way he was, he was embarrassed. So I finally asked him if he would feel more comfortable with a blanket around his shoulders, and he seemed to embrace that idea, and was then eager to walk in the hallway. Mattie literally walked from his bed throughout the hallway, where he met up with his wheelchair. He did a great job, and did not even need more pain meds to do this. Mattie then had a brief visit to the childlife playroom, where he showed Julia all of his art work. Julia is a PICU nurse and I got the feeling that she really enjoyed meeting Mattie today. You have to understand that a PICU nurse deals with crises and very ill children. Many of these children are either unconscious or at least too ill to really interact. Though Mattie is a PICU patient this week, there is nothing quiet or slowed down about him. He kept Julia busy today with running back and forth to the playroom, and then doing laps around the hallway. However, she was a good sport, and I think by the end of the day, she had great respect for Mattie. I don't know, but Mattie has a way of making friends. All the nurses seem to be very fond of him. Perhaps they feel this way about all their patients, but they have a way of making Mattie feel very special.

My parents and I went to have lunch together at the hospital today. Thanks for a great lunch! It was nice to leave the room for an hour, since by 1pm, I felt like I was going to pass out. Thanks Whitney, Lesley, Jenny, and Jessie for making this possible. When I got back from lunch, I found all "the ladies" in Mattie's room. They had built a cardboard box structure, and fans out of popsicle sticks. In addition, Mattie started blowing bubbles too, and all of us got a kick out of him. We started using his popsicle fans to redirect bubbles around the room and into the hallway. It was a sight to see. All of us were on the floor, fanning Mattie, and I agree with Elizabeth (an art therapist intern from GW!!!), Mattie looked like he was surrounded by a "fan club." See some of these pictures below.
Mattie, Jenny, Jessie, and Elizabeth

While Jenny, Jessie, and Elizabeth were visiting, they gave Mattie a scrap book/journal. It is our hopes to save Mattie's pictures in this book, and perhaps write a story about each. Thank you for this lovely gift. Also they bestowed on Mattie a personalized autograph picture from Mickey Mouse, as well as Mouse ears and a wonderful stuffed Mickey Mouse pirate animal. I am not sure how they got these special treats, but we all love them! They are always thinking of ways to get Mattie engaged and smiling. Sometimes easier said than done.

This afternoon at 3pm, Mattie was very eager to attend the childlife science activity hosted by Chris (Chris helped make gak with Mattie yesterday). Chris is a Georgetown student and member of the chemistry club. However, in order for Mattie to participate in Chris' experiment this afternoon, he had to find a nurse who would be willing to escort him to the playroom. Because Mattie is on a monitor and on pain medication, he is not allowed off the unit without a nurse. Fortunately, I ran into Miki (one of our amazing Hem/Onc nurse who has helped me many times!) and she agreed to go with Mattie so he wouldn't miss out on the ice cream experiment. Chris and his group planned two experiments. The first one was making vanilla ice cream using cream, vanilla extract, sugar, salt, and the magic ingredient, liguid nitrogen. Mattie and his big buddy, Brandon, watched and were eager to sample the final product. The other experiment was very neat. Everyone got a chance to take a live rose and dip it into liquid nitrogen. After 20 seconds the rose petals froze to the stem and then using the stem of the rose we struck the rose against the floor. The rose petals literally broke in many pieces, almost like breaking a glass on the floor. We were all fascinated with this and we all just wanted to continue "breaking" roses. Though Mattie loved his rose so much, he refused to break it or dip it into liquid nitrogen. So we took his rose back to the room and put it in water. Below you will see some pictures of this great activity. Chris also asked for our permission to put a picture of Mattie doing one of these experiments in the chemistry lab. So Mattie is getting around Georgetown's campus!

Is Chris stirring a witch's brew or making ice cream?

Brandon (Mattie's big buddy) and Mattie enjoying ice cream! In fact they both had two cups full of ice cream. The best they both ate all week!

Watching all the fun activites were Miki (Mattie's nurse), Grammie, Toni (Brandon's mom), Dr. Gonzalez, and Margaret (Mattie's first preschool teacher and current tutor).

Whitney captured Mattie and I smiling during today's "break the rose" experiment. I think this picture speaks to the power of the human spirit. We have been through so much this week, yet for a minute everything was okay in the world, and Whitney captured it!

Mattie dipping a rose into liquid nitrogen!

After the experiments were over, we went back to Mattie's room. Mattie was then greeted by Dr. Bob Henshaw. Bob answered our questions and talked about how we will taper off Mattie's pain meds, so that he can hopefully be discharged on sunday. Bob and Mattie started joking about Sparky. Mattie was surprised that Bob knew that Mattie called his central line, Sparky. Bob told Mattie that he has spys around the hospital that let him know how Mattie is doing. We all cracked up with this. Mattie let that sink in and he said, really, well if you do, then what is Sparky's middle name? Lord knows what Mattie is talking about, because it was news to me that Sparky had a middle name! Any case, I asked Bob who would be removing Mattie's perineural catheter on sunday. Bob reflected on this, and was going to say the surgical resident, but then asked Mattie if he wanted him to do it. Mattie said yes, so Bob agreed to come to the hospital on sunday to remove the pain med catheter and the stitches. I don't know about you, but I don't know many doctors willing to come in on a sunday, when they are not on call.

During the afternoon, Mattie had a special visit from Margaret. Margaret and I have been through a lot together. She was Mattie's first preschool teacher, and she came into our lives at the right time. Mattie and I both learned a lot from Margaret, and I admire Margaret and her teaching abilities. Over the years, Margaret and I developed a close friendship and it means a great deal to me that she is willing to work and tutor Mattie this year. Before Margaret left the hospital today, she shared several gifts with us. She gave Mattie the cutest frankenstein filled with candies for halloween. Then Margaret gave me some tea (the name of the tea was "calm," very appropriate no?), chocolates, and then handed me a beautiful silk pouch with dragonflies on it. When I opened up the pouch, I found a most exquisite and delicate silver trinket box. Inside the box was a stunning silver rosary that Margaret's mom purchased from the Vatican in Rome. I consider this a very special gift, for many reasons. First of which is because Margaret is dear to me, but also because Margaret recently lost her mom (about a year ago), and to me parting with such a special item that belonged to her mother means something very significant to me. I will carry Margaret and the spirit of her mom with me each day, during this cancer journey. Thank you Margaret for coming today, and participating in the experiments with us, and for sharing a part of your mom with me today!

Thank you Carolyn Coker for the wonderful dinner tonight. You sent us a feast of Italian food. Mattie was thrilled to see the spaghetti and he even broke the potato chip routine to have some. The chocolate cake was wonderful. Everyone this week is helping keep my chocolate addiction at bay this week!

I want to share some e-mails and letters I received today. The first e-mail I want to share comes from Carrie, my TA. Carrie wrote, "I met Janet M. today at my office; she brought a beautiful plate of homemade brownies to donate for the Bake Sale tomorrow. Also, several of the Master's level students have given me cookies and brownies and one Doc student brought cookies by my apt this morning. I still have some more coming in tonight! So many people are so giving and generous and I love being a part of the receiving end; it truly brightens my spirit! It was a pleasure meeting Janet, she had only wonderful things to say about you and how she remembers when you were pregnant with Mattie and that her son is Mattie too...I can tell she really loves you and is thinking of you and is very touched by your blog. She just kept saying 'anything I can do I would do for Vicki, I just want to help.'"

The second e-mail comes from Tamra B. Tamra is a SSSAS mom at the upper school. Tamra wrote to Mattie, "We hope and pray for you everyday. And we wanted you to know that we live a couple of blocks from your doctors at GTown. Please tell your mother and daddy and grandparents and friends that we would welcome anyone on your "team" at our home, day or night for a respite, a soda, a dinner, a shower, a place to gather in groups when you spend some time at the hospital or simply a place to be closer so they don't have to go all the way home." Thank you Tamra for your support and such a generous offer.

Jane P. (a RCC mom) wrote us a beautiful letter last week. Jane wrote, "The Mattie helpers are like an army or a group of undercover special agents. There are a lot of us, and not just locally but all over the place. We will all be pumping up the prayers today and tomorrow. God will not know what hit him! We're going to be praying non-stop and I pray that somehow you will feel our prayers like a blanket wrapped around you." Thank you Jane and for the wonderful muffins and gift card!

This week, I received a letter in the mail from a doctoral student and friend at GW. Melissa S. wrote, "I have a very clear memory of you pushing two year old Mattie in a stroller by the Jefferson Memorial. He had the cutest little blue docker type shoes and was just so sweet and darling. It crushes me to think of the pain that he is now having to endure and the torture you and Peter are having to endure as you try to help him, advocate for him, and protect him in whatever ways you can. I now check you blog daily. I've always been amazed by what an amazing researcher, counselor educator, and professional advocate you are. Now through your blog, I've gotten to see what an amazing mother, wife, daughter, and friend you are too. The ways you are able to work through each unique problem each new day astounds and inspires me. The fact that you are able to articulate it all so clearly, humbly, and honestly is truly such a gift. And the love and hope that exudes each entry is just breathtaking." Thank you Melissa for your kind words, they mean a great deal to me.

On the electronic front, we want to thank Ms. Pollak and Teresa H. for your lovely e-mails and Lorraine and Susan for your e-cards. I want to thank you all of you who are baking and participating in tomorrow's Team Mattie bake sale at Episcopal High School. I have high admiration for all of you. I understand why Peter and I stay up 24/7 to handle Mattie's issues, but what I keep asking myself is what keeps the rest of you motivated? I am not sure I know the answer, other than you are all special people and God brought each of you into our lives for a very specific purpose. Thank you God for these gifts!

October 23, 2008

Thursday, October 23, 2008

Thursday, October 23, 2008

Mattie woke up early this morning. He was greeted by Anna, his physical therapist. Mattie did not want to get out of bed or work with Anna. So Anna left the room and said she would come back in the afternoon. However, after Anna left, Mattie decided that he did want to get out of bed, so I called Anna back in to work with us. Anna helped me transfer Mattie out of bed, and then Mattie literally walked around the bed to sit in the wheelchair. This sounds easy enough doesn't it? But to a child hooked up to every possible machine, whose right arm is heavily wrapped from surgery, and who has been sleeping in bed in a very contorted position, walking is challenging. But he did it! I find when Mattie is determined and motivated (and thank goodness he is a self starter), he can accomplish anything. While sitting in the wheelchair, Anna commended him for a job well done. Then Anna was telling me what we could do for his right hand to bring down the swelling and start moving his fingers. Anna demonstrated on my hand how I could massage Mattie's right hand. I am telling you this, because guess what Mattie initiated on his own today? I observed him massaging his right hand, using his left hand. He was massaging his hand using the technique Anna demonstrated on me. I consider this a VERY positive sign. Mattie appears to be interested in taking a strong role in his recovery process. This was a wonderful sight to see.

After Anna's session with Mattie, Jessie (our art therapist) came by with a very creative activity for Mattie. She brought up a toy plastic claw and a box of beautiful stones. The object of the game was to use the claw to grab at stones. He and Jesse were having a great time doing this, until our nurse Katherine came in to tell Mattie he needed a glucose test, which entailed a simple prick of his finger to draw blood. What seemed to be a simple request became very frightening to Mattie. After about 45 minutes of rationalizing with Mattie, I felt he was just too frightened to undergo the finger prick. In fact, he said, "Mommy please don't" let this happen." So I asked Katherine if we could draw blood from Sparky (Mattie's central line) instead. The PICU tends to avoid using the central line because of infection reasons, but Katherine was kind enough to understand and appreciate Mattie's feelings. After the blood test, Mattie was visited by another favorite volunteer, Sally... the Story Lady. Sally has a special gift for telling a story and bringing it alive. She shared the "Widow's Broom" with Mattie today, an adorable and spooky Halloween story! Mattie loved it and Sally also invited Mattie to be an actor in her play she is performing at the hospital in January. Sally captivates both young and old!

Linda was very instrumental, once again, in helping Mattie today. She helped me talk with him as we prepared him for his arm dressing change this evening. Interestingly enough Mattie thought if the dressing on his arm came off, that his skin would open up and expose his bone. We explained to him the concept of stitches. It appears to me that the more prepared Mattie is for things, the better he handles them. In fact, he actually asks very intelligent questions about the procedures.

Linda played with Mattie while I went outside for lunch. It is lovely to be able to sit in the sun and breathe fresh air for an hour or so. Alison came today and delivered me a wonderful lunch and we had a lovely conversation together. I am so enjoying this opportunity to get to know Alison and hear her perspective on things. The irony is that Alison and I are very busy moms, and we did not get the chance to know each other at SSSAS last year. But circumstances brought us together this year, and this is another example of what Mattie's illness has done for me. Out of great sadness comes some very happy moments and friendships. Alison and I always joke about what day and month it is, because she knows that since I live more in the hospital than at home, I am pretty much disconnected from reality and the outside world. Part of this disconnection, I feel, is also for self preservation, because there is so much information and interactions one can handle when dealing with such a crisis. Thanks Alison for the wonderful lunch and for the sling buddy (a cute ghost that will attach to Mattie's sling). But most importantly thank you for the happy meal. As soon as Mattie awoke this morning he let me know he wanted a happy meal and a McDonald's apple pie. Go figure, but we accomodate all cravings here!

My parents spent part of the afternoon with Mattie, and when I returned to the room, I saw that they were all working on a project with Jessie. They designed an incredible car garage that held 17 cars! Thanks Jessie for this creative project, which enabled Mattie to use his hand and imagination. We consider ourselves incredibly lucky that Linda, Jenny, Jessie, Whitney, and Lesley can tag team and work with Mattie. This incredible individual attention is what makes Georgetown a unique institution. In the midst of all of this, Mattie has a fan club. His "Big Brother," Jey came to visit him. Jey is a CT scan tech and has grown very fond of Mattie. Jey brought Mattie a lovely ambulance hotwheel today, and he added it to his garage he built. In addition, Mattie was visited by Debbi (our sedation angel, as I call her), Kathleen (a wonderful Hem/Onc nurse), CR (another wonderful Hem/Onc nurse who will be leaving Georgetown soon to serve as a traveling nurse in Africa), and Denise (our social worker). I imagine every oncology patient around the country feels a special connection to their oncology team, but I must say, this is like home away from home for us, and I don't say this lightly. I truly feel that these individuals are invested in Mattie, us, and his recovery.

Mattie seemed pretty motivated to go to the childlife room this afternoon. However, the PICU staff felt that Mattie shouldn't go to this room without a nurse present, since the day before while in the room, Mattie overtaxed himself and his heart rate went up. Thankfully Katherine arranged her schedule so she could accomodate Mattie's trip to the childlife room this afternoon. That was very thoughtful and gracious of her. Before heading to the room, we had two visitors. The first visitor was Chris, who is a student at Georgetown and a member of the chemistry club. Chris came to Mattie's room and showed him how to make Gack. Gack literally looks and feels like slime. It is made with glue, water, and borax. Mattie had a great time with Chris, and is looking forward to Chris' demonstration tomorrow of how to make ice cream using liquid nitrogen. Below you will see a picture of Mattie with Chris. They were having a gack racing contest. Whose gack could hit the plate first?

Mattie's second visitor, was Dr. Jeff Toretsky, Mattie's oncologist. Jeff was introduced to Mattie's interpretion of "Stinky Cheese Man." Mattie did not make up this character it is from a book. In any case, Mattie and Jeff had a whole dialogue about Stinky Cheese Man that continued into the childlife playroom. While in the playroom, Mattie obtained a huge truck (Mattie has a knack for doing this!). Fortunately Jeff was around, because I had no idea how the truck parts went together. In the midst of all of this Jeff was telling jokes and trying to make the mood lighter. I keep telling him he missed his other calling, because he is like an oncologist by day, and a comedian by night?! Or maybe all oncologists need a sense of humor in order to be able to do the work that they do, because having lived it for 10+ weeks, there are some very grim moments. Below you will see a picture of Mattie with his "Stinky Cheese Man" figure he designed.

Mattie's current food of choice this week, if you call it a food, is potato chips. I snapped a picture of Mattie eating a bag of chips today, and to me, he could be the poster child for Utz potato chips. To me the picture captured just how much he loves eating them.

Later this afternoon, Mattie had a visit from Dr. Bob Henshaw. Bob came to change Mattie's arm dressing, and in the process Dr. Gonzalez came to take the stitches out of Mattie's central line (stitches that have been there since August). Mattie was given some extra Fentenol to help with the pain that could be caused from the dressing change. Mattie handled the dressing change like a champ! In fact, he seemed interested to know what was under the bandages. Mattie made me laugh though. During the dressing change process, he turns to Bob and Mattie says to him, "are you sure you should be doing this?" I started laughing and Bob seriously answered Mattie's question. I guess in a hospital, Mattie has learned you can't be too sure, so why not ask? Bob was very pleased with how the incision looked and in the midst of all of this, Peter pulls out the hard copies of the pictures Bob took during Mattie's surgery. Mattie loved seeing the R rated pictures, and before I knew it, Mattie was flashing them in my face. I think he got a kick out of my reaction to it, and the more I told him I did not want to see them, the more confident and fascinated he became in these surgical photos. Needless to say, I am so impressed with Mattie, and can't get over how well he is handling a challenging situation.

Dr. Gonzalez came upstairs from the clinic today to remove Mattie's central line stitches. This literally looked like mission impossible because these stitches have been there since August and were intertwined with his skin. But she kept at it, and was very delicate and mindful of Mattie's fear. Needless to say, Bob and Dr. Gonzalez made all of this look easy, and I found myself getting nervous for Mattie this afternoon as all of this was pending. However, all my fears were allievated this evening. After the dressing changes, Mattie was assisted into bed, watched a little Scooby Doo, ate some pasta, and fell asleep.

While he was resting, I joined an association conference call tonight. At the end of the call, my colleagues asked how Mattie was doing and how I was doing. I told them that the conference call was actually a good diversion for me tonight. They laughed and said, don't you know we schedule these calls just to provide you with this kind of relief. It made me laugh, because I know this isn't the case, but the fact that they were trying to lighten the mood made me laugh.

I would like to share two e-mails with you tonight. One if from Bill S. I have had the opportunity to become acquainted with Bill through a mutual friend. Bill lost his son to osteosarcoma. Despite the tremendous loss and grief he is contending with over this horrible disease, Bill finds the strength within to reach out and help me, and follow Mattie's blog. Bill writes to me periodically. After reading my blog last night, he felt compelled to respond regarding the anger I have been feeling. Bill wrote, "The squeaky wheel gets the grease or in our terms the screaming mom gets things done!! You should write a book, you are a great writer on the blog. I'm sure it's theraputic for you also." Thank you Bill for helping me and for supporting Mattie.

The second e-mail is from my friend, Susan S. Susan wrote, "Do you know how utterly gracious you are? With all you have going on with Mattie, those of us who are supposed to be supporting you continually are blessed by you!!!" I believe posting friend and family comments on the blog is very helpful and insightful, and in a way, your perspectives and insights are a very valuable part of this cancer journey for me. Though Peter and I own the blog (as you will see I have copyrighted it!), I feel that this blog belongs to the whole Team Mattie community. We share the highs and lows together, and process these things together.

Thank you Joan Holden, Head of SSSAS, for your continued calls of support and love as they do make a difference to us! On the electronic front, we want to thank Kim J. (Brandon’s aunt; Brandon is Mattie's big buddy here on the floor), JJ (our canine friend), and Brian Boru (our feline friend) for their e-mails and Karen, Lorraine, and Susan for your e-cards. I also want to thank Anand (Peter's colleague at Voxiva) for the beautiful olive wood carving he brought back for us from Israel. This is a very special gift, it is a carving of the holy family, and the way the carving is done, it reminds me of Peter and I holding Mattie through this illness. We also thank the Bires family for dinner tonight. The sweet treats were incredible. As I conclude tonight's blog, it is 11:15pm, and Mattie is up and eating!

October 22, 2008

Wednesday, October 22, 2008

Wednesday, October 22, 2008

Quotes of the day - About a Mother's love. Thank you Charlie!

A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path. Agatha Christie

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. Sophia Loren

Mattie had a better night of sleep on tuesday. However, he did wake up at 3:30am in pain. You would have been very proud of Mattie. He quickly learned how to push the button of the PCA which administers Fentenol (a narcotic). Mattie continues to be a real trooper. He woke up this morning and was a bit upset with the fact that his left arm hurt him. His left arm had two IVs in it and the IVs were bothering Mattie, and in essence he couldn't use either arm since monday. This was very frustrating for Mattie. Mattie needed a distraction, and fortunately we received a package from Melissa Spriggs (a GW graduate who I have had the pleasure of becoming friends with). Melissa, your glow in the dark dino puzzle saved the day this morning. However, while doing the puzzle, Mattie got frustrated because he couldn't move his arms. He was trying to describe which pieces he wanted me to move for him, but at times I wasn't moving fast enough or misunderstood which piece he wanted. This caused him to become very upset. Upset because I think he realized he couldn't function the way he wanted to. But we plugged through it and then opened up the other wonderful halloween gifts Melissa sent Mattie. The halloween flashlight was a hit. Thanks Melissa!

My parents came in today to watch Mattie, while Peter and I sat outside for an hour to eat lunch. Thank you for that time away! Thank you Ellen for bringing lunch for Peter and I and for uploading more books on tape to Mattie's computer. During Ellen's visit, she heard me ranting and raving about a couple of things that were stressing me out. These things did not relate to Mattie's situation, but more about personality conflicts and my frustration with the observation that the medical profession can have incredible egos and temperaments which I find so unnerving. Under normal circumstances I could put these turfdom issues into perspective, but all bets are off, when you are sleep deprived and your son is very sick with cancer. I do admit I can be more explosive and more emotional, however, the fact that I am holding it together at all, merits some kind of gold star. Ellen listened to me and empathetized, but then she went out on a limb and told me she was worried about me. That all this stress isn't good for me, and that it is counterproductive and ultimately won't help Mattie. I let that sink in for a bit. Because when you are angry about something, it is sometimes difficult to think rationally. But while having lunch with Peter, I reflected on what Ellen said to me. I realized that what she was saying was accurate. I can advocate for Mattie, but I can't change a system overnight. Absolutely! So I gave myself permission to let these things go. Thanks Ellen, I am sure it wasn't easy for you to say this to me.

Mattie had the wonderful opportunity to play with "the ladies" today. Though we truly value the medical and nursing care Mattie is getting at Georgetown, we would be lost without the adjunct services such as art therapy and child life. Mattie responds to these professionals, and they can motivate him in ways that I can't. I could feel inadequate by the fact that Mattie is so eager to play and be with these women, but I don't. I don't, because I realize I can't be everything to Mattie, and I also welcome these social interactions for Mattie. Each of these women bring a new perspective and skill to the situation which is so needed and welcomed. I find that they are very motivated to find ways to stimulate Mattie, and they are getting ready with ideas to help Mattie as he becomes more incapacitated with the second surgery that is scheduled.

At 3pm today, Linda was in Mattie's room helping Mattie's nurse prepare him for his physical therapist visit with Anna. Anna came to Mattie's room to help us learn to transfer him from the bed to a wheelchair. Mattie was motivated to get up, because guess where he was going? That's right, to the childlife playroom! You should have seen the entourage it took to move Mattie. Peter was pushing the wheelchair, and Anna, Jenny, Linda, and myself were carrying tubes, monitors, and a blood drain. It was a sight. Anna was super helpful and is trying to find a way to build a rapport with Mattie so they can begin therapy soon. Anna is coming back on thursday to follow up with Mattie. While in the childlife playroom, Mattie started to blow bubbles. This was a great activity for him, because all this blowing helped to clear out his lungs. There is NO coughing and congestion tonight. Below you will see some great photos from today.

Whitney, Mattie, Lesley, Jenny, and Linda blowing bubbles!

Whitney, Mattie, and Jenny filling the room with bubbles!

Lesley and Whitney found a bubble maker, and along with Mattie's bubbles created an enormous bubble mountain. Mattie was fascinated with the bubbles as were we!

In the midst of our playroom time, Mattie was visited by Erin (one of favorite Hem/Onc nurses). Erin came in to say hi, and it is so lovely to see how much the Hem/Onc nurses really care about Mattie. Though Mattie is in the hospital this week, he is not being cared for by his typical Hem/Onc team, instead because he has had surgery he falls under the domain of the PICU staff. None the less, the Hem/Onc nurses check in on us, talk with Mattie, and I appreciate their deep caring and concern for us. I truly believe nursing is second nature to them, and not just a job.

After about an hour in the playroom, Mattie started to get tired and his heart rate began to increase. We wheeled him back to his room and in order to get him back into bed, he needed more pain medication. After he got back into bed, we had a visit from Dr. Bob Henshaw. We discussed some things with Bob, and Bob's plan is to change Mattie's arm dressing tomorrow or friday. I personally continue to be in awe of what Bob accomplished on monday. It is funny that he saves lives by day and yet by night is a dedicated dad who like the rest of us goes to soccer games, helps with homework, and so forth.

After Bob left tonight, we had a visit from our favorite volunteers, Jerry and Nancy. If you recall Jerry gave Mattie an electric keyboard last week. It is always a pleasure to see them, and to chat about life and music. While I was chatting with them, I had the pleasure of hanging up Mattie's "helping hands" on his room door. These hands are precious. Basically Mattie's friends from RCC, SSSAS, and around the country, cut out a paper hand and decorated it for Mattie. The hands are laminated and joined together with clips. They are works of art and a labor of love. Below you will see a picture I took of the hands. Everyone on the floor is commenting about them! Thank you for the hands, the symbolism is touching, and they add a lot of color and love to our hospital world.

"Helping Hands" on the door!

I want to acknowledge Ann, Abigail, Katie, and Michael Henshaw for hosting a flower sale to raise money for Mattie. It is so special when children initiate such actitivies for their friend. Below you will see a picture of the kids after the sale was over! Thank you.

Thank you Eva K. for dinner tonight. We loved it and appreciate you thinking of us!

I would like to share four e-mails with you tonight. One is from my friend Susan S. Susan can always find a way to make me laugh. I think you will see why after reading what she wrote to me. The subject title of the e-mail was "in need of therapy." Susan wrote, "OK I have to admit. I have a bad case of Mattie-itis. I am addicted to your blog. Ever since you spoiled us Monday & part of Tuesday with periodic updates I must check your blog at least 25 times a day!!! While it is bad for a therapist to have an least it's non-life threatening."

The second e-mail comes from CR. CR is one of Mattie's Hem/Onc nurses who we have had the pleasure of working with. CR sent me this on the day of Mattie's surgery. CR wrote, "Even though I am not at work today, my heart and mind have certainly been there. I woke up and my initial thought for the day was of Mattie and his surgery. My mom and I went to Mass this morning (at 9 am, right about when I thought surgery might have been starting. . .) to pray for a successful day and speedy healing. While I have only worked with Mattie a couple of times, it is easy to see how close nit and loving your family is and I honestly wish each and every one of our patients had parents who are as involved, knowledgeable, and proactive as you both are. Mattie is a very special guy."

The third e-mail is from my TA, Carrie. Carrie wrote, "I am in awe and my mother and I were discussing this just last night at how mature (emotionally) Mattie is...he is such a mature 6 year old. I mean it is unbelievable the statements he makes that are so on the mark!..Your blog has set my mother into a plethora of very real memories when she had to go through a lesser degree of surgeries but surgeries none the less with my brother when he was Mattie's age. She remarked that my brother who is a very very smart man, a fullbright scholar (two times), was not this mature and expressive when he was going through his painful surgeries. She remembers feeling a lot of what you are describing in dealing with the system...She even mentioned they almost killed my brother when they almost gave him the wrong dose of pain meds. So your openness and love are reaching and impacting many people and not just in their current lives but going back decades! Thank you Vicki and give Mattie my love!"

On the electronic front, we want to thank Brian Boru, Nancy M. (a parent of an osteosarcoma survivor), Uncle Dave and Aunt Cheryl, Joy, Wayne H., Mirela and Lori, Jenny and Claire C., Jacky, and Cecile and Lily P. for all your wonderful and supportive e-mails. Thank you Karen and Margaret for your great e-cards!
As many of you know Ann is our Team Mattie coordinator. Ann has and continues to be with us through every step of Mattie's cancer journey, but this week, it was a hard week, because Ann's husband was the person performing surgery on Mattie. Usually I am two steps ahead on how someone is feeling, but now a days, I am so innundated with my own emotions that I am not too perceptive. Meaning that I never thought about how awkward this week could be for Ann. Awkward because Dr. Bob Henshaw (Mattie's surgeon) is her husband. I have great respect for Ann and what she can accomplish and even more admiration that she stepped aside this week, while Bob was working his medical magic and did not want to complicate an already complicated situation. As you know moms, friendships, and emotions can be volatile. None the less, I sent Ann an e-mail last night because even though I am not physically seeing her this week, I know she is working behind the scenes and has us in her constant thoughts. Using the line from the movie Casablanca, I told her that she and I have the making of a beautiful friendship. Ann responded to my e-mail by saying we would be, "Friends forever, battling cancer and looking for cures for the rest of our lives!" Though there is an incredible amount of pain and torture on this cancer journey, it has opened my eyes to the beauty, love, and friendship that surrounds me.

I end tonight with a beautiful quote that CR, one of Mattie's nurses, sent me. It comes from another fine lady, Audrey Hepburn. "For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For a slim figure, share your food with the hungry. For beautiful hair, let a child run his/her fingers through it once a day. For poise, walk with the knowledge that you never walk alone. People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone. Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands; One for helping yourself, and the other for helping others."
Goodnight, God bless, thank you for your support, and I appreciate the bake sale that is being planned on Mattie's behalf this Saturday at Episcopal High School!

October 21, 2008

Tuesday, October 21, 2008 - UPDATE

Tuesday, October 21, 2008 - UPDATE

It is now 10:30pm, and Peter and I are thoroughly worn out. How Peter is going to work tomorrow is beyond my comprehension. We had virtually NO sleep last night (monday), and who knows what tonight holds. Peter and I have been struggling all day with pain management issues. Dr. Bob Henshaw (Mattie's surgeon) came to visit Mattie this evening and felt that Mattie looked overly sedated and sleepy. Of course this is wonderful from the pain management standpoint, however, from a recovery stand point it isn't so great. Mattie is too tired to talk, attempt to eat, move, and so forth. Peter and I are learning that there are different camps of thinking about how pain management is administered. By tonight, our patience was frayed and we finally spoke with an anesthesiologist resident who worked hard at coordinating Mattie's team regarding the administration of pain meds. Folks from Georgetown came up to talk with us about the dangers of upping the dosage of Mattie's perineural, contrary to Bob's advice. Peter and I are tired, confused, and feel that these folks need to coordinate Mattie's pain care better so they are on the same page, and we are not left to understand this at 10:30pm. I think we currently have a plan, but right now Peter and I are sitting on the edge because Mattie's blood pressure has shot through the roof. We are trying to figure out what is causing this high blood pressure.

I am not sure how Mattie is dealing with all of this. He is being asked to deal with superhuman issues and concerns, but he is holding his own. He already understands the purpose of a PCA pump and the button he needs to press for pain control. He also is very compliant with the nurses, considering all the pain he is in. I want to thank Alison for lunch today and Ashley for dinner tonight. You both spoiled us today! Thank you Jane for your very generous gift card you sent us, we will treat ourselves to dinner! Thank you RCC for the wonderful artistic helping hands! We love the handprints of the kids and love how they decorated them. I can't wait to show them to Mattie. Thanks Mommy and Daddy for the donuts and cheesecake today. Mattie will enjoy these treats soon. I am closing tonight with some wonderful e-mails I received in the last day or so. I received many and will put a few on at a time. Keep saying a prayer for Mattie during this time of healing, and we appreciate your thoughts and words of support and encouragement. I can honestly say I couldn't get through the day without all the amazing support inside and outside of the hospital!

Sylvia M. (Counseling Professor at GW) wrote, I read through your blog about being awake at 2 o'clock and dealing with Mattie's pain. It reminded me of my own experience of lying in a hospital in a life-threatening situation, albeit as a young adult. What I wanted to offer you was my observation that there is a kind of dissociative effect that kicks in which I think is a protection that is wired in to us. It keeps us 'observing' the pain rather than fully experiencing it. There is a lot of literature about this phenomenon, but I wanted to share my personal experience with it because I'm hoping that it will give you comfort to think that Mattie might be experiencing that 'observing' of his own pain and therefore be somewhat protected from the full experience. My spiritual side tells me that this is God being with us in our pain.

Bob G. (friend from RCC) wrote, Today is a huge day for your family and I just wanted to let you know that you all are in my family's constant thoughts and prayers even more than usual. I'm a big believer in the power of prayer and positive energy and the two of you and Mattie are getting that from literally thousands who are hoping that things go well with this first surgery. On my way in to work this morning I heard a piece on the radio about Mattie Stepanek, whose books you have commented on in the blog (I also knew Mattie's Dad when he worked at SOME for many years). I think the emotion of that piece combined with me thinking about the surgery today became overwhelming at some point and I just started crying on the drive in to work today. The people on I-395 must have thought I had lost it, but it didn't matter b/c it felt good to release a little of what has been building since we heard about Mattie's diagnosis. Ashley and I are both daily blog readers and we often discuss what a powerful and emotional experience it is to read it every day. I have definitely experienced the full range of emotions along the way. I have felt angry and frustrated when I hear about insensitive treatment (i.e. turning the lights on at 4:30 am to get vitals when Mattie (or the two of you) may have finally started getting some much needed rest) or non-sensical treatment such as a doctor telling you that only Mattie can push the pain button for his medication after surgery. I really feel myself cheering you all on when you advocate for Mattie's care and best interests. There are so many times when you guys have put your foot down on an issue and I've just found myself saying "Way to go Vicki/Peter!!" At the same time, I have vicariously experienced the joy that you both feel when Mattie has good days, when he smiles and plays with his friends, and just gets to be a 6 year old. And I have also experienced your sadness, confusion, acceptance, and sometimes anger when the reality sets back in that Mattie isn't an average 6 year old right now. As a parent, I think you are doing a phenomenal job in your whole approach to this. You are honest with Mattie, honest with the blog, and your deep love for each other and for Mattie is truly heartwarming and inspirational. Mattie's story has touched so many in a variety of ways, and I know I am not alone in sharing this last point. I hope that I have never been a parent that has ever taken my kids' happiness for granted, but this experience has helped me to gain a much deeper awareness of this issue. In the last few months, I have noticed that I hug my kids a little tighter, hold them a little longer, and really appreciate the laughter and fun that we share as a family. I know you all might feel like you are on the receiving end of a lot of gifts these days, but this is the gift that you all have given to me and my family and we are very grateful.

Alison (friend from SSSAS) wrote, I absolutely love the pre-op photo! It really tells a story – how something as awful as cancer makes us truly appreciate our loved ones. It reminds me of a quote I clipped this summer, written by Tony Snow, the news anchor and presidential spokesman: “The art of being sick is not the same as the art of getting well. Some cancer patients recover; some don’t. But the ordeal of facing your mortality and feeling your frailty sharpens your perspective about life. You appreciate little things more ferociously. You grasp the mystical power of love. You feel the gravitational pull of faith. And you realize you have received a unique gift – a field of vision others don’t have about the power of hope and the limits of fear; a firm set of convictions about what really matters and what does not.” It goes on, but this is the part that captured my attention this summer. I keep it on my desk. And, while I’m sure you feel this is a “gift” you could happily have lived without, the photo captures a bit of what Tony Snow was talking about when he called it a “gift.”

Tuesday, October 21, 2008

Tuesday, October 21, 2008 - I will try to do continual updates today. Look below.

It is around 2am, and we are not getting much sleep here. Mattie is running an 100.8 degree fever, and they have decided to run a culture of his blood to rule out other infections. In addition, Mattie is very uncomfortable and is now on Fentenol and Versed in addition to the continuous perineural drip. There is something about this hour of the morning that makes things seem more pronounced, scary, and daunting. Mattie told me that it feels like we are killing him. But we explained that all this pain was very normal, and it is a matter of finding the right balance of pain medication. Everyone is trying very hard to make Mattie comfortable, and we feel supported as we plow through the night. However, Mattie is not enjoying the catheter much nor does he like the fact that he has two IV lines in his left arm. As he becomes more agitated, he wants to move his body. Which we are encouraging him not to do right now. But he held our hands tonight with his right hand, which seems to be swollen, but functioning quite well considering the major surgery he had. I sit here worried about this fever, and of course wondering how we are going to manage the pain, since he complains every 15 minutes of pain. Mattie is bandaged up on the right side, and has a drainage tube and the perineural coming out of the bandage. On the left arm he has two IVs, and he also has a catheter to collect urine. So movement is not an easy process for him, and as we move into tuesday morning, I wonder how on earth he will accept his current state, and better yet, how will we help him when we are both wiped out? All great questions, and hopefully I will be able to give you the answers as the day unfolds.

It is around 3:45am, and we are still struggling at managing Mattie's pain. They have now ordered a continuous IV drip of fentenol, in hopes of helping Mattie. When I asked him to describe his pain on a scale of 1 to 5, with 5 being the highest, he selected 5. He is still running a fever as well.

It is 12:30pm, I will try to recap the morning. At 5:30am, they finally got the continuous drip of Fentenol going. It was at that point where we got some peace (why Bob's suggestion for a PCA wasn't done is beyond me, but again this is what happens when you are in a system, and you have to follow certain protocols or chains of command). But at 8:30am, Mattie was in pain again, and he is good at describing his pain, and he never yells or screams. Well being hoarse from being intubated during surgery may impact this lack of screaming, but he is excellent telling us when he needs pain meds administered. Around 11am, the PICU doctors rounded. What does this mean? Well it is literally like a pow pow outside your room door. In attendance is the PICU attending, our HEM/ONC attending, residents, nurses, and our nutritionist, Ellen. Linda stayed with Mattie while we attended this meeting right outside our door. Being in the mental health field I am very cognizant of confidentiality and HIPAA issues. I am always in amazement how such a round, discussing vital patient information, can take place right in the middle of the hallway. But I digress. So Peter and I listened to what the doctors were reporting. Frankly, Peter is a lot better at this than I am. I am far from dispassionate when it comes to Mattie. If I were listening to the report on someone else, then I am sure this factoid report, with NO emotion, would have been just fine. But it was FAR from fine as a mother of the patient. I was so insensed by the whole meeting and how it was conducted, that I told Peter right in front of the doctor that I did not find this meeting productive or helpful to me, and I left. I am in no way qualified to tell a doctor with years of experience how to manage or run his team or staff. But I feel I am very qualified to express how his cold demeanor impacts me, a family member. Any case after the round, Julie (Mattie's nurse) came in to remove Mattie's catheter and Arterial line (which looks like an IV in his left wrist). The arterial line was internally taking Mattie's blood pressure every 10 minutes or so. It was a blessing to get this line taken out, because Mattie's left hand was basically immobilized on a plank or splint. Currently, Mattie is sleeping, but it is our hopes of getting him out of bed today. He needs to move around, because of his swallow breathing, his lungs are not getting enough oxygen. The aftermath of surgery isn't a pretty picture. But I have wonderful news to report. Bob was very humble yesterday, and he did not tell me this per se, but Mattie's attending oncologist today told us how important it was for Bob to remove Mattie's tumorous bone intact. In fact, when they see Bob's surgerical pictures, they are all in amazement. In amazement because Bob's work is clean, orderly, neat, and appears to have really cleaned out the area of anything that looks cancerous. To me that was such excellent news, and you need excellent news like this, in order to get through the hours of watching your child immobile, in pain, and with tubes coming out of him in every direction.

It is now 4:20pm and we just met with Dr. Gonzales. We shared with Dr. Gonzales our concerns about Mattie not being on a PCA (patient controlled anagelsia). Some of you may recall the coordinated care meeting we had with Dr. Bob Henshaw and several other professionals prior to Mattie's surgery last wednesday. Within that meeting, Bob discussed with us a PCA. It was our understanding we were going to have one for Mattie right after the surgery, to help manage the pain. However, the anesthesiologist assessed that there could be a safety issue if Mattie obtained a PCA. The safety issue was that Peter or I would push the pain pump for Mattie, rather than Mattie doing it for himself. What became a simple dialogue turned into a decision that I believe wasn't in Mattie's best interest. Mattie did not receive access to continual narcotic pain medication until 5:30am today. So we told Dr. Gonzales about our expectations and what we felt transpired in the pre-op area. Dr. Gonzales then spoke to the anesthesiologist and advocated on our behalf. The beauty of the PCA is Mattie can dictate when to push the pump and receive medication when he is in pain. Therefore, he will only get this narcotic if and when he feels he has pain, and it won't be floating in his system 24 hours a day. It will be used only when he needs it. I am happy with the way this was resolved and I am hoping that Peter and I can help Mattie learn this new system.

However, the amazing news to report is that Mattie got out of bed today and mainly did most of the work himself. He got up, went to the bathroom, and stood a while. I went out of the room to have lunch, and I missed this special moment, but Mattie shared it with Peter, Alison, Whitney, Lesley, and his nurse, Julie. Mattie is handling this like a trooper, and Peter and I are very aware of the first 48 hours being crucial for pain management.

October 20, 2008

Monday, October 20th, 2008 - UPDATE

Monday, October 20th, 2008 - UPDATE
Mattie is doing great! The Surgery went as planned! Those two statements alone are sufficient for Vicki and I to be screaming a collective "Ya-Hoo!" We are filled with a sense of Relief, Amazement, and Exhaustion. The Relief is that Mattie's surgery went as planned and promptly as scheduled, and we even had a smiling surgeon appear at the hospital room door, telling us that things were good. We cannot tell you what a relief it is to have Bob Henshaw leading Mattie's limb salvaging activities. It fills us with a sense of comfort, confidence and security knowing that we are the hands of such excellent care. The Amazement is that in the course of one day, in a matter of hours, Bob took a complete bone out of our son's arm, removed any questionable and possibly cancerous material, replaced it with a high-tech synthetic prosthesis and returned Mattie to us, in good shape (albeit tired and bandaged) with a complete arm. To top matters off, Mattie was wiggling his fingers and squeezing his right hand once back in the room. The Exhaustion is that we are completely depleted from today. The hours moved both slowly and with lightening speed. We do not even remember looking at our watches, although we know we were watching the hours pass painfully by.

We want to thank Bob Henshaw for what we deem as miracle work today. Bob, from the deepest part of both of us, we cannot thank you enough for what you have done for Mattie. We want to thank our Georgetown Team for all their support and caring today. From the Clinic to the PICU, from Art Therapists and Child Life Specialists to Case Managers and Social Workers and even Sedation Nurses, you guys were there for us today, so thank you.

We want to thank everyone who expressed their support and caring for us today, and in some way sent us a communicationn (be that by email, blog post, prayer, e-card, etc). The outpouring of support from our collective community of family and friends was tuly amazing. Thank you to each of for keeping your distance at a time when many of you want to help the most. We were able to get through the day staying focused on Mattie and his return to us after leaving him at 7:50am this morning.

Last, I think it goes without saying, but the collective thoughts and prayers for Mattie's well-being were indeed heard today by our Lord, and he in return protected Mattie for us. God Bless you all!

It is 8pm, and Mattie is in his room, and sleeping soundly. The perineural is working like a charm so far. We have had two visits one from Dr. Davis a surgerical resident who was in the OR today with Bob, and Dr. Casey the PICU resident on call tonight. Everyone is pleased with Mattie's progress. There is so much I would like to say tonight, but I concur with Peter, I am exhausted. But two comments. Bob sent us some photos of Mattie's surgery today. Fortunately Bob is smart enough not to send me these photos. I would need the G version of these surgerical pictures. Way too graphic for me right now. But Peter did share with me the picture of the bone Bob took out of Mattie's arm today. A part of me has been pining about this arm bone leaving Mattie's body, but after seeing this picture, I say thank God Bob removed it. It looks deformed and not human. It looks like a huge turkey leg bone. It had to come out, and there is some truth that a picture says 1000 words. I am happy to report too that Mattie held and squeezed our hand tonight using his right hand. That is simply amazing considering Mattie had muscles and nerves moved around today. The whole surgery is miraculous, but we also realize God performs miracles through those of us on earth. Today Bob performed what I would call a miracle.

I am not sure what tomorrow brings, but like the 12 step philosophy, we take it one day at a time. It is the only thing that works. Thank you Liz C. for a wonderful dinner tonight. You really spoiled us. The nurses wanted to have a party in our room when they saw the food coming in from the Cheesecake Factory!

Thank you for all the wonderful e-mails today. Hopefully tomorrow I can pull myself together to actually be more coherent on the blog. But we felt that there was a powerful force and community behind us today. Thank God for all of you, you keep us going through some very difficult moments!

Monday, October 20, 2008

Monday, October 20, 2008

Peter and I will try our best today to update you periodically! Thanks for being with us along this journey!

at 6:45am: Mattie was wheel chaired from his room to the pre-op area of the hospital. Linda, Peter, and I were with Mattie. Thankfully Linda was there to entertain and distract Mattie, so that Peter and I could answer questions posed by the nurses and the doctors. The pre-op area was a zoo. A real experience at 6 something in the morning. Peter and I had a conversation with the anestesiologist today regarding the PCA (post surgery pain control method) administration. The doctor told me that only Mattie could administer this medication to himself, and that Peter and I were prohibited to do this. I immediately began to take issue with this, because how could Mattie give himself medication if he is in so much pain and out of it? I basically said to her, that she couldn't be serious and that if she thinks other parents don't push this pain button for their children she is kidding herself. Then walked in Dr. Bob Henshaw who put the issue to bed with one word. The word was "yes," of course the parents could push the button. Below you will see a picture Linda took of us while we were in the pre-op area. Mattie was in great spirits! He is simply amazing!

at 8:00am: Peter got dressed up in his bunny suit and walked Mattie into the OR. They told us Mattie would need an hour of prep work, and would be heading into surgery at 9am.
at 11:28am: Linda just reported to us that Mattie is stable and is still in the process of having his bone removed. Meanwhile, Jenny (our art therapist) came up to Mattie's room, and we made some praying cranes out of origami. A wonderful distraction!
at 1:00pm: We got a call from Emily, our surgical liaison. She let us know that the tumor is out, the margins look good (the area between the diseased and non-diseased tissue), and the reconstruction is beginning. Mattie has lost some blood, but is stable.
at 2:00pm: Dr. Jeff Toretsky called me on my cell phone to let me know that he was in the surgery room observing Mattie's operation and that things were looking good. He talked to me about the margins and the size of the repiphysis and answered other questions I had. To my knowledge the shoulder portion of the reconstruction is done, and Bob is working on the elbow portion of the humerus.
at 2:46pm: A group just came up to get Mattie's bed, so things are progressing and he will come up in his own bed. Our nurse, Brenna is going to check on Mattie's status to see when we can meet him in the PACU. The surgery is still taking place, and probably will for at least another hour.
at 3:10pm: Dr. Bob Henshaw came to our room. The surgery is complete and Mattie is getting wrapped up and put into a sling. Bob was happy with the way the surgery went. He said there were no surprises. Mattie did have to get his axial nerve and the cap of the shoulder joint (so the prosthesis is now connected to the scapula) removed though, but in the grand scheme of things, it appears that Bob was able to remove all of the tumor. Bob will check on Mattie tomorrow, and plans for Mattie to be on the perineural (like an epidural) pain management system this entire week. We are awaiting Mattie's arrival or our trip down to the PACU. Overall, Bob was happy, and if Bob is happy so are we.
at 4:00pm: We were just visited by Debbi (our sedation nurse, aka our angel), Denise (our social worker), Catherine (our case manager), and Kathy (nurse practitioner). Kathy went down to the PACU to visit Mattie, and just called. Mattie is out of surgery, wrapped up, and coming out of sedation. He was alittle agitated, so they gave him some more medication. I spoke to Bob as well, who confirmed Mattie's status. Mattie has been the buzz of the hospital today, and we are awaiting his arrival. The debate about the PCA (pain management) administration continues. At the moment, they are now making the nurses responsible for the administration. We shall see how this works out. In the midst of all of this, we have had two visits from Jey. Jey has become our friend. He is a CT tech, and has gotten to know Mattie well. Jey checks with us each day we are in the hospital. Jey exemplifies what quality care is all about. Mattie has quite a following here!
Stay tuned as more details unfold.

October 19, 2008

Sunday, October 19, 2008

Sunday, October 19, 2008

Thank you Susan S. for tonight's quote. Thank you for the Guideposts and Daily Unity prayer requests too!

"Miracles tumble out of the sky and fall into the laps of those who expect them." Sally Huss

Mattie slept until 10:30am. A major record! Mattie was excited today to be able to spend the day at Campbell and Livi's house. Campbell is a good buddy of Mattie's from SSSAS. Mattie was motivated to get up and dressed! Mattie was excited to play today and jumped right into it as soon as he got to Campbell's house. Thank you Christine for watching Mattie, while we went out to lunch (thanks Mommy and Daddy for taking us to lunch) and then walked a nature trail. We won't be doing this for a while, and it was so nice to be able to enjoy today's sunshine. Thank you Christine for this wonderful gift of time, and a peaceful moment for part of the day. It may be our last peaceful moment for a while. Christine let me know that Mattie ate up a storm and she tried to accomodate him with all his food demands. Mattie had a great time playing outside and simply enjoys his time with Campbell and Livi (Campbell's sister). Christine, it is moments like today, where I must say I miss aspects of my former life. I always enjoy getting together with you and seeing the boys play together in their creative manner. Thank you for a great day, I know Mattie had a wonderful time and did not want to leave. Below you will see some fun pictures from Mattie's playdate.

Mattie, Livi, and Campbell climbing on their pretend fort!

Mattie loved pulling Livi and Campbell in their red wagon. They were pretending it was a taxi!

When Mattie got home later this afternoon, he was greeted by JJ. You can see Mattie and JJ playing together in this picture. Thanks for the good wishes tonight JJ!

At around 6pm, Mattie and I did a dressing change of his central line and then we packed up for the hospital. When we arrived at the hospital, we met Kathleen (one of Mattie's excellent nurses) and Angella (one of Mattie's lovely nurse techs) in the parking lot. We had a lovely visit with them, and it speaks to the connections we have been making with folks at Georgetown. On our way into the building, we ran into Tricia (one our favorite nurses). It was quite a greeting tonight. So we are checked in tonight and Mattie is beginning hydration for tomorrow. Mattie's surgery is at 7:30am, and they will most likely come up at 6:30am on monday to bring him to the OR and we will be with him until he is sedated. We have been told that the surgery will be a minimum of 6 hours, with two hours afterwards in the PACU (post anesthesis care unit). We will try to keep you updated throughout the day, since someone from the hospital staff will report to us periodically.

I would like to share three e-mails with you tonight. One is from Maria H. (a parent of an osteosarcoma survivor, and a major supporter of our family), the second if from Naomi Fischer (the mom for my lifelong friend, Karen, in NY), and the third one is from Grace (our good friend from RCC). Maria H. wrote, "Just a short note to wish Mattie, you and Peter good luck tomorrow. You know, "luck" is God's nickname, so I am really wishing you that God will be with you, and I know He will. You and Peter have done everything right to prepare Mattie for surgery. I think he is ready and so should you both be. Now, take a deep breath and put all of your faith in God. Before Teresa's surgery, I prayed and told God: "We've done everything that we've could, now it's YOUR turn to do your part. Help us, please." I know you are a believer and I wanted to share with you how much peace this simple prayer brought to my mind, to just let go of all my humanly worries and realize that there is, in fact a Higher Power that watches over us. Remember that verse in the Gospel? 'A hair does not fall off your head without God knowing of it' was all I focused on. I knew He'd be watching over Teresa and us, and He indeed, did. And I can tell you now, the whole ordeal -not just the surgery, but all the months we spent in the hospital- developed in a fashion nothing short of a miracle. So believe that He will be there to help you out, to comfort you in your pain. Our mass and our communion today will be offered for Mattie's successful surgery and speedy recovery, and we will continue to pray for him at dinnertime. God bless you all. Be strong!"

Naomi wrote, "I want you to know I read your blog every single day. It is a document of love, courage, insights, inspiring and inspirational actions by you, your friends and family. I hope doctors and other health practitioners read it, because it illustrates the enormous gulf between what medicine can do and what other needs the patient and his/her family -- both emotional and physical -- have to be considered as part of treatment. You, Peter, and Mattie himself astonish me in what reserves of love, spirit, creativity, sensitivity, fight and intelligence you can call upon every day. You are all so remarkable. And because your blog has drawn me closer to you all, I want to tell you that my thoughts and prayers are always with you, and that tonight and tomorrow my heart is with you."

Grace wrote, "You and your family are always on my mind and in my thoughts and prayers, but even more so this weekend. I'm thinking of you constantly as this huge event looms. It's no wonder that you're too preoccupied to notice a flower and Peter is frustrated about not being to watch a baseball game--one simple pleasure that he is so entitled to and should be so easy to do; your world is full of complications, and a baseball game shouldn't be one of them!

But during this tense time, I again must redirect your attention to the fact that you have have been so wildly successful in making Mattie one very happy little boy; he does notice the flowers, and wakes up with energy wanting mom's homemade breakfast to fuel the day that he is so looking forward to. The fact that he is having such a wonderful time with his friends this weekend shows that, once again, you have done a beautiful job in preparing Mattie for what is in store tomorrow and in the coming weeks; he's busy being a happy boy, not overshadowed with worry. And he is so prepared because you and Peter are wise beyond your years. You don't simply take the advice that is given to you; you weigh it against your own research and combine it with your great gut instincts and knowledge of your son. On the eve of Mattie's surgery, I imagine you must be filled with thoughts of "I hope we're doing the right thing." Well, squash those thoughts. Just remember you and Peter have not made a wrong move yet. You both work so hard to be well informed in every respect that you have become masters at this. And that wonderful blog of yours will someday help countless parents down the line do the same. As we read your blog, you're changing so many of our lives for the better, but most importantly, it reinforces that you're doing the best thing possible for Mattie. "

On the electronic front, we want to thank Kim, Karen, Susan, Emily W., Lorraine, and Margaret for your wonderful e-cards and Brian Boru, Ms. Pollak (Thank you for explaining why Native Americans hold feathers while they pray... birds fly high in the sky, it is believed that the birds carry prayers to God in heaven.), Coach Dave, Bob N. (for his prayers), and Hunter and Jackson M. for your great e-mails. We also want to thank Father Carlos for the prayers he is saying on Mattie's behalf in Bolivia.

I leave you tonight with an inspirational story which was posted on the Guideposts website. Thank you Susan S. for sharing this with me. It is a very sensitive story, and speaks to powers well beyond our human comprehension. Thank you all tonight for your e-mails. They mean a great deal to us. Please keep Mattie in your prayers and thoughts tomorrow. Mattie is in God's hands tomorrow, and of course Dr. Bob Henshaw's. I pray that God gives them both strength.

A Mother’s Hope (a story of faith from the Guideposts website)
Were the doctors wrong or was my son’s cancer really untreatable?
By Tiffini Dingman-Grover Sterling, Virginia

Something was wrong with my son David. He was a big kid, eight years old, 150 pounds, but he had lost his appetite. He’d stopped telling jokes, too, stopped being his usual happy-go-lucky self. His jaw hurt for no discernible reason. He began throwing up. We thought David was suffering side effects from his medication for attention-deficit disorder. Then he threw up in the car on the way to his favorite restaurant, and the pediatrician told us to get him to a hospital immediately.
The emergency-room doctor was young, a resident. He checked David over, shined a light down his throat. He was so shocked by what he saw, he uttered something I can’t repeat in polite company. The doctor apologized and said, “We need an MRI immediately.”
I noticed the nurse crying. What did she know that I didn’t? Hours later, at 2:00 a.m., I found out. The diagnosis was still imprecise, but David was being admitted. To the oncology ward. “A massive growth is pushing into your son’s throat,” the doctor said.
“Mommy, what’s wrong with me?” David asked.
“You’re going to be okay, sweetheart.”
“You’ll make it go away, right, Mommy?”
“Of course I will.”
They gave David pain medication and he soon fell asleep. My husband, Bryn, and I lay on the floor. The room had a recliner chair, but neither of us could figure out how to work it. My mother-in-law had already taken our two older boys, Matthew and Keith, home. In the dark I tried to pray. But all that came at first were memories.
David was our youngest child, our baby. I loved him more than I knew it was possible to love anyone. We had a goodnight ritual we went through no matter what kind of day it had been. I would say, “You.” He would say, “Me.” And together we would say, “Forever. Sleep with the angels, roses on the pillow, sleep with Jesus.”
You, me, forever. Lying on that cold hospital floor, I felt fear and anger build. Twice before David I had gotten pregnant only to lose the baby. God, you didn’t give me David just to take him away, did you? A piece of medical equipment beeped. Can you at least give me some kind of answer? Some reassurance? Silence. I waited in that silence a long time. No answer came. Fine, I finally decided. I’ll do it myself. David was going to live. No power on earth would take my boy from me.
David did have cancer, in one of the worst places possible, at the base of his skull. His particular cancer was called rhabdomyosarcoma, an aggressive tumor spreading across much of the left side of his face and pressing on his carotid artery and optical nerve. It was why his jaw had hurt and he had felt so sick. It also explained his mood swings.
The tumor was right next to his brain. So close, in fact, that surgery was out of the question. David’s only chance was intensive chemotherapy and radiation. Even then, only half of kids diagnosed with his kind of cancer survived five years.
Those odds didn’t daunt me. I was determined to will David back to health. Bryn and I both worked for a computer software company—I handled finances, Bryn managed the warehouse—and our bosses generously allowed us to take time off and work odd shifts to spend as many days and nights with David as possible.
We became his nurses, his coaches, his constant companions. He had an IV line inserted in his chest. We learned how to clean it and check for infection. His eyes developed nystagmus from the pressure on the optical nerve. We made certain his patch stayed in place. When he had trouble breathing, we held the oxygen mask to his mouth.
As David’s treatment advanced, doctors told Bryn and me that his chances were even worse than most kids’. The cancer was too deeply entrenched. I refused to be discouraged. Although the chemotherapy left David skinny and weak, I urged him out of bed every day to walk down the hall.
We reached our insurance company’s one-million-dollar coverage cap in 11 months. After that, we faced bills up to fourteen hundred dollars a week. Not going to stop us, I thought. I began selling off clothes and other things around the house.
Much later, when we learned that only an expensive experimental surgery had a chance of saving David, I even went on eBay and put up for auction one of the “Frank Must Die” bumper stickers Bryn had made—“Frank” was our family nickname for David’s cancer, short for Frankenstein. I told potential bidders I was trying to raise money for my son’s cancer care. Amazingly, we got some media coverage—a reporter at our small hometown paper happened to know someone at the Washington Post—and money came in. The support was wonderful. Still, David wasn’t getting any better.
One night in the hospital he sat up in bed and said, “Mom, the angels came to talk to me. It’s time for me to go.”
I peered at him through the dimness, fighting to stay calm. Was he dreaming? “You saw angels, David?”
“They’re here with me now, Mom. It’s time to go. I’m tired.”
I struggled to control my voice. “Sweetheart, I know you’re tired. But you’re not ready to go. Fight. Stay with me. Just stay with me a little while longer.”
I rushed out of the room and told the nurses, then called Bryn and asked him to gather everyone. I was about to start praying when a nurse came up to me. “Tiffini, I’m sorry. David’s vital signs are very low. This could be the end. We’ve done everything we can for him. His little body is worn out.”
I went back to David’s room and sat in a chair in the dark. Again, my fear surged and I felt it form into words. I started to pray, then stopped. Something pressed on me, some resistance. God? Or just my own exhaustion? I was deeply tired. Tired of fighting. Tired of fruitless hope. Why, God? Why? He’s mine. You can’t take him!
Again the pressure, the resistance. Only this time it had a shape, almost like a blanket settling over me. A calmness, a sense of release. I heard words: David is a gift. Love him. Don’t own him.
The calmness deepened and I found myself repeating that word, “gift.” I had been trying so hard, throwing every ounce of strength into David’s life. What if that life wasn’t mine to have, to direct according to my will? What if the best thing I could do for David was give him to God? Lord, David’s life is a gift from you, not me. Let your will be done.
I looked up. Our entire family was there. They kissed David and said goodbye. When they left, Bryn and I sat together in the room, holding each other, crying and praying. We didn’t stop until 7:00 A.M., when David suddenly sat up. We looked at the monitors. His vital signs were normal.
“What are you guys doing?” he asked.
“David? Are you all right?” I asked.
“Um, yeah.”
“Can you remember anything at all about last night?”
David cocked his head. “You mean about Jesus? Sure. He told me I could stay awhile longer. There’s more for me to do.”
“You...talked to Jesus? Did you actually see him?”
David made a face. “Mom, come on. He was too bright. I could only see the angels. They were gold.”
“But you feel okay?” I asked.
“Yes, I feel fine.”
Today David is a challenging 13-year-old. The road has not been easy. Radiation and chemotherapy did not rid him of cancer. We ended up taking him to Los Angeles for an experimental surgery that removed nearly all of his tumor.
Sometimes I think of the anger I felt that awful first night in the emergency room, my fist-shaking on the cold hospital floor. I don’t blame myself for it. I’m a mother, after all. And I suppose I needed to pass through that anger to learn the lesson of my son’s illness. As is common with kids who survive cancer, David lives with side effects from radiation and surgery. He has good days and bad days. Yet he and I both know that each and every day is a gift. And that it is a blessing to say each night, “You, me, forever.”