Tuesday, November 18, 2008

Tuesday, November 18, 2008

Thank you Julie R. for today's message of the day!

"It is not because things are difficult that we do not dare; it is because we do not dare that they are difficult." —Segoyewatha, [Red Jacket]

It was decided today that Mattie's continuous drip of Fentanol (a narcotic) was going to be shut off. Of course, losing this general pain management system, is always a concern, because I wasn't sure how Mattie would respond and what kind of pain he would be in. Before I tell you more about Mattie's day, I wanted to share a dialogue I had with my parents and Amany on sunday. I told them that I feel at times I write the rated G version of things on the blog. I am not sure why, maybe because some details are not worth discussing, remembering, or better yet are not easy to live through much less write about. Apparently this comment stuck with my dad for the past few days. My dad reflected on the importance of letting readers know just what Mattie is contending with in terms of the equipment and connections that are made to his body post surgery, which makes tranfers from the bed much more challenging. It also gives you a greater appreciation for just how amazing Mattie is. He handles all of this in his stride, with great courage and dignity. So below you will see my recap of everything Mattie has connected to his body this week! It is overwhelming to see, and I wonder if my listing will really capture the essence of what Mattie has been dealing with, but I figure it is worth a try. I also think reflecting on this list should give one great pause, because Mattie has and continues to survive such incredibly debilitating procedures. So here you go, these are all the items Mattie had connected to him this week. In a way it is like the bad or nightmarish version of the song, "12 Days of Christmas." On the first day of surgery, my true love gave to me, one perineural filled with Ropivacaine. You get my drift, and you can tell I am getting punchy today.

1) left arm has a perineural in it delivering Ropivacaine,

2) right leg has a sciatic nerve catheter which was never turned on, but is there for pain in case Mattie's epidural popped out,

3) epidural in Mattie's back for pain management of the leg,

4) Foley cathether for urine,

5) heart montoring device which consists of wires connected with suction cups to Mattie's chest,

6) pulse ox - to assess saturation of oxygen in the blood system,

7) a blood pressure cuff on his leg,

8) a drainage tube for left arm,

9) a drainage tube for left wrist,

10) a drainage tube for right leg,

11) an IV for saline solution, and

12) an IV for a fentanol continuous drip.

In addition to these 12 items connected to Mattie, Mattie is also dealing with a) a bandaged and immobilized right leg, b)a splint on his left wrist, and c) a bandaged and slinged left arm. Thanks Daddy for encouraging me to reflect upon all these connections. Now I get why I am thoroughly tired and overwhelmed with each transfer from a bed to a chair.

Even though it was Jane's day off from the PICU, she was here at Georgetown training nurses. She had a nursing student come and visit with Mattie. Mattie got to explain to Kristen, the student, why he was in the hospital and what kind of surgery he had. He did a great job! As Mattie was reflecting on his surgery, he started asking me questions about Bob. Mattie wanted to know how one learns to become a surgeon, and how Bob developed his skills. Mattie wanted to know if Bob practiced on a dummy or robot. It was a fascinating dialogue.

Anna came to visit Mattie today as well, and helped us transition Mattie to the lounge chair. It was easier transitioning him today, and we did it without giving him anti-anxiety medication. Mattie spent time in the chair for several hours. He had moments of tiredness today, but he did not rest much. Junko came to visit us today and brought Mattie and I a wonderful and delicious lunch. Junko wanted to play with Mattie while I had lunch outside of the room. But Mattie would not allow me to leave. Mattie seems to find comfort in having me around. It was around this time that Linda visited Mattie and I was able to get out of the room. I had a wonderful lunch, a lovely conversation with Junko (I learned this was the first time in Junko's life that she actually assembled 1000 cranes, and I learned how she selected the origami papers and the colors. It was a true labor of love, prayer, and wishes for longevity), and even got a fabulous massage out of this. I told Junko if she ever decides to leave the legal profession, she could make a killing as a massage therapist. After 30 minutes with Junko, I began to actually feel my neck and shoulders. What a special gift today, and there was something very touching about someone taking care of me.

As the day progressed Mattie continued to have more pain. At times intense. Mattie is back on fentanol boluses and morphine by late afternoon. Tranferring Mattie back into bed was an absolute killer, and Mattie is now developing redness on his back that needs to be watched so it doesn't turn into a bed sore. Denise, our social worker, came to talk with me today and she wanted to know how I am feeling about potentially taking Mattie home soon. She said that she is concerned about me and isn't sure how I will manage Mattie's transfers alone. I would have to say I agree 100% with Denise, and it is nice to know I am not the only one worrying about these issues.

Mattie also had a chance to play with Jenny and Jessie today. As usual they brought their creativity into Mattie's room. They created a "Mattie Ocean" bin, filled with foam fish with magnets on each fish. They made Mattie a fishing pole, and he used the pole with his left foot and right hand. It was simply wonderful to see Mattie having such a great time. See the picture below with Mattie and his angels (Linda, Jessie, and Jenny)!

This afternoon, I had the pleasure of reconnecting with Sara. Sara is a former student of mine, and now colleague.

When Mattie was diagnosed with cancer, I contacted Sara in August and asked her to take over my Undergraduate fall class at GW. Mind you this gave her only a few weeks to prepare to teach this class, but she accepted it willingly. Sara brought us an amazing homemade English Vegetable soup. It was wonderful and just makes you feel good. Mattie also loved his happy meal and advent calendar. Thank you for thinking of him. While I was visiting with Sara, we also had a lovely visit from Susan DeLaurentis, SSSAS' Director of Counselor. Susan was the bearer of many gifts for Mattie. A delicious Thomas Sweets shake, a superheros game, and wonderful turkeys from Mrs. Fiske's first grade class. The turkeys are up and gobbling on Mattie's door. The Happy Thanksgiving recorded card with Mattie's friends on it was also super special! Thanks Susan for these wonderful gifts and for your constant support

This evening we had a visit from Bob. Mattie had two questions for Bob: 1) how did Bob learn to do surgery, did he practice on dummies and robots? and 2) if you put a magnet near Mattie's new bones will a magnet stick to his arms and leg? Bob answered both questions and told Mattie they were good ones. We spoke to Bob about various things and also discussed Mattie's increased pain. The trajectory is that Mattie's perineural pain system will be cut in half tomorrow to assess how his arm will handle this. If he tolerates this, then the perineural will be shut off on thursday, with the potential of being discharged on friday. This is met with both excitement and some serious hesitation.

Liza, one of our favorite volunteers, came by tonight to read to Mattie. However, Mattie started developing an intense stomachache, and only wanted to watch the animal planet TV station. So Liza sat with him, until the pain got too intense. The resident came in to assess his pain, and immediately wanted to order Mattie a stomach x-ray. I tried to tell the resident that the stomachache was inevitable because Mattie hasn't been eating much since surgery, and now that he actually ate dinner tonight, he probably had intense gas and his stomach wasn't ready to handle food. Needless to say, we pulled in our HEM/ONC nurses who helped us with the situation, and fortunately after two hours of howling, Mattie is now calm and relaxed. As of tonight we said good-bye to the PICU team and transitioned back to our HEM/ONC folks.

I end tonight's blog with a new term that Dr. Shad told me about, and that is intensivitis. Apparently this is a condition a child and his/her family can develop after spending a significant amount of time in an ICU. Basically the symptoms are a skewed sleep wake cycle, sensitivity to noise, etc. It helps explain Mattie's change in sleeping habits and a host of other issues. Not that having a name for this makes me feel better, but it is nice to know that others have experienced what we are living through.

Monday, November 17, 2008

Message of the day (Thanks Charlie!): "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”


Sunday night, before we headed to bed, Mattie wanted to open a gift that my friend Amany gave me. So we honored Mattie's request and let him open his gift. Amany gave Mattie a remote control car. Mattie was excited to see it being unwrapped, but I was concerned with how Mattie was going to play with it. I put the car down on the floor, and I held the remote control for Mattie and placed it by his right hand (the right arm was operated on about a month ago). What happened next was amazing, and speaks to the spirt of a child. Mattie used the spider exercise technique as I call it, and he slowly moved and crept his right hand fingers up the blanket and to the remote control. Then the next thing I knew, the left foot got into the action. So the right hand held one part of the remote control and the left foot held the second control on the remote. Needless to say when there is a will, there is a way. Mattie was very focused on playing with that car, and became creative on his own. So a simple gift actually became a great physical therapy tool, that we capitolized on today. The interesting part about all of this is that Bob predicted Mattie's use of his right hand. Bob admitted that Mattie's second surgery was aggressive, but besides the importance of removing the tumors, the added benefit to this surgery is that it forces Mattie to use his right hand (which was the weaker arm for several months because of the large tumor present in it). Needless to say, it is moments like this that we capture to give us hope. Mattie's spirit is to be admired and in a way is miraculous.


Mattie did wake up at 3:30am today, and he was very uncomfortable and crampy because he had not had a bowel movement since surgery. Mattie insisted on getting out of bed and using the bathroom. But at 3:30am, that wasn't going to happen, since it is a major production to move him. So we finally convinced him to sit on a bed pan. Needless to say, nothing happened, but it only added to his frustration. But 8am, he was very upset because he had to go to the bathroom but couldn't. Mattie's main complaint today was his discomfort with his foley catheter, and he assured me he couldn't have a bowel movement if connected to the catheter. While I was working with Mattie's nurse and doctors here at Georgetown to request that the catheter be removed, Peter had e-mailed Ann, who forwarded the message to Bob. Bob responded back to Peter's inquiry about removing the catheter, and then Peter forwarded me Bob's e-mail response. I am telling you this because thanks to technology (e-mails and hand held devices) the catheter was removed. The staff at Georgetown agreed it should be removed, but they wanted to check to see how Bob felt about this, and fortunately I was able to flash Bob's message at them on my blackberry. Mattie handled the removal of the catheter like a champ. He was happy to say goodbye to this tube!


At 11am, Anna, Mattie's physical therapy came in to help us transition Mattie to the lounge chair. Now if I were Mattie I would have thought twice about this transfer, considering I experienced the pain of this yesterday and knew what to expect. But instead, Mattie though apprehensive, was looking forward to heading to the chair. In fact, he asked Anna if he could use a wheelchair tomorrow. Mattie is quite a trooper. The transfer today went better than on sunday, which probably means that Mattie and I are both getting used to it. None the less, it does take four people to move Mattie. Mattie spent several hours sitting in a chair today, but unlike yesterday, Mattie did NO napping in the chair. Instead, he played with Lesley and Whitney (childlife interns) and had a great time. By the time I saw Lesley and Whitney later on, they were covered in stickers thanks to Mattie. Mattie played with his remote control car and worked with model magic. Mattie also had a visit from Jenny and Jessie. At one point I looked into the room and there were bubbles everywhere. All these ladies brought many smiles to Mattie's face, and I so wanted to take pictures, but I know Mattie is sensitive about pictures right now. But trust me, there was a lot of joy filling the room. Mattie also got a chance to play with Linda as well. So all in all, he had a rich and fun day! I appreciate all these women giving me a break today.


Somewhere in the midst of all of this, Mattie had a visit from Bob. Bob is pleased with Mattie's progress and we discussed next steps and how to taper off Mattie's pain medication. Mattie was proud to show Bob how he could use his remote control car, and Mattie heard about the Lego Robotic competition that Bob and his daughter, Katie participated in on sunday. This caught Mattie's attention, especially since Mattie is quite a builder. When Mattie was two he loved to play with a screw driver and disassemble and reassemble his hotwheel and other toy cars. Mattie is fascinated with how things work and function. It was interesting to see Mattie's reaction to Bob today, because Mattie did not seem apprehensive to see Bob and held no grudges. The beauty of being a child and living in the moment, because if you recall during Mattie's dressing change, he said a lot of mean things to Bob. During Mattie's visit with Bob, Dr. Jeff Toretsky paid a visit to Mattie. Jeff was impressed with how Mattie was doing and he shared with me some tentatively good news, that the initial examination of the three other tumors reveal a great deal of cell death. We do not have a percentage of necrosis yet, but Jeff wanted to share what he learned so far.


Christine came to visit today and brought lunch for me, and a happy meal for Mattie. Mattie was REALLY looking forward to a vanilla shake and food. Mattie is back on a vanilla shake diet. This is his food of choice this week! Thank you Christine for the Scooby book and the book of kids' jokes. Mattie will love this. It was nice to chat as well. Christine and I were playground buddies at Mattie's school and we used to meet on a regular basis so the kids could play after school. It is always nice to chat and deepen our friendship.


At around 4pm, Anna came back and helped us transfer Mattie back into his bed. This went pretty well, but once back in bed, Mattie slept for about two hours. This moving around is definitely very wearing for Mattie. It was a first, while Mattie napped today, so did I. In fact, Jane (Mattie's nurse) could see that no one respects my sign not to enter our room, so she created another sign today, and she monitored the door to make sure we were not disturbed. I wish I could say the nap helped, it certainly did not hurt, but I feel very tired. When Mattie woke up from his nap, he was agitated and in pain. We tried anti-anxiety medication first, which accomplished nothing, and then moved onto pain medication. Mattie ate a little dinner, and then insisted on going to the bathroom. By this time Peter was here, and helped me with this project. This time Mattie was successful. What a bowel movement it was. It was like a monumentous occasion once it happened, and the joke on the floor was that our room was so odiferous, that nurses came in to check on us. Mattie was thrilled with this accomplishment, and decided to play a little basketball on the side of his bed with his right hand.


We want to thank the Chiaramonte family for a beautiful and nutritious dinner. We enjoyed it, and Mattie loved the apple pie pastry you brought us. We also want to thank you for the wonderful frog Webkinz and the very meaningful and touching plaque you presented to us. Liz explained that she bought this beautiful wood plaque back in July, while on vacation, once she heard about Mattie's diagnosis. I took a picture of the plaque so you could appreciate it, and I love the picture Liz selected to place in the frame. I have the plaque on display in Mattie's room, and it will be a gift I will always cherish. Thank you Liz!


On the electronic front, we want to thank Brian Boru, Susan, Emily W., Karen, Lorraine, Eric & Nataliya Goodman (author and illustrator of the Flightless Goose book), and Liza B. (one of Mattie's favorite volunteers) for their e-mails and e-cards. Liza e-mailed Mattie tonight and plans on visiting Mattie in the hospital tomorrow night to continue to read Harry Potter. We are very blessed by all our wonderful blog readers who are touched by Mattie, his story, and your willingness to be there for us throughout this time.

I end tonight with an e-mail Ann forwarded to me from her aunt and uncle in Boston, MA. Though we do not know Ann's extended family, they are reading Mattie's blog, and not unlike Ann and Bob, want to support us throughout this journey. Ann's aunt wrote, "We've been reading Mattie's blog regularly and were thinking about Christmas. Are you planning on having him at your Santa party if he's well enough? If not, Ed said Santa would go visit him (either at his house or in the hospital). Just a thought. We feel so bad for him. Ed said Santa would go anywhere to cheer him up." We thank you for thinking about ways to make Mattie's christmas a special and memorable one.

Sunday, November 16, 2008

Sunday, November 16, 2008

Charlie, thank you for the message of the day! Charlie wrote, "to me this describes you perfectly in your battle for Mattie and his right to live a life free of this disease."
The bravest battle that ever was fought; Shall I tell you where and when? On the maps of the world you will find it not; It was fought by the mothers of men!”

Mattie had a good night of sleep on saturday. Peter and I could tell that by 6:30pm on saturday, Mattie was taking a positive turn in the pain department. His vitals were looking better too. The goal was to get Mattie off of the every two hour demand for more fentanol, which is a narcotic and has its own nasty and addictive side effects. Mattie yesterday switched over to using tylenol. Not his drug of choice, but when no other option is presented, it is amazing how good tylenol looks. Mattie did awake this morning at 5:15am, and Peter and I had a mini battle with Mattie about pain medication. He demanded more fentanol, but we told him he could make a choice, either it was tylenol or nothing else. Of course we also explained why we couldn't give him more fentanol, and that it wasn't good for his body or his recovery time. That message did sink in! So Mattie eventually made the right choice, and he took tylenol and then went back to sleep and slept soundly.

Mattie had a visit today from Margaret, his first preschool teacher from RCC. Margaret came bearing all sorts of treats. Beautiful cookies with wonderful designs on them. Mattie selected a heart shaped sugar cookie and ate the whole cookie. We want to thank Margaret for the coffee and tea and the tasty snacks for us as well. I ate a pastry that was in the shape of a horse shoe that was delicious! We had a nice visit with Margaret, and I reflected that it is ironic, that we are back together once again working on meeting Mattie's needs both educationally and developmentally. Margaret met our family during a crucial point in Mattie's history and it is very meaningful that once again she is rising to the occasion to help us again. Thank you Margaret for the floam and the highlights hidden pictures (one of Mattie's favorites!).

After Margaret's visit, we had a visit from Tamra Bentsen and her daughter, Louise, a SSSAS family. Tamra brought us a wonderful and generous lunch and has very thoughtfully offered to help connect us to doctors at MD Anderson for a consultation. Tamra was even willing to help guide us around Texas if we so chose to visit the medical center there. We thank the Bentsen family for their support and the cider was a wonderful fall treat!

This afternoon was a momentous occasion. Mattie moved from his bed to a lounge chair right next to his bed. This was not an easy task by any stretch of the imagination. You have to understand that Mattie has his left arm wrapped up, his right leg completed wrapped up, his right arm still recovering from surgery, his central lines connected to both an IV and a fentanol drip, and his left arm is connected to a perineural (a localized pain management system to his arm). Also let's not forget he also has a catheter attached so he can go to the bathroom without leaving his bed. So even if Mattie wasn't in pain, just managing this octopus of tubes is a feat. Mattie was given anti-anxiety medication to help with this transfer from the bed to the chair, but I am not sure that really worked too well. Mattie was still quite upset and in pain. Which leads me to believe as a mom that it isn't really anxiety that we are battling but true pain. It took four people to transfer Mattie to a chair, Peter, me, Jane (Mattie's nurse), and Brad (the physical therapist). I am not sure who the move was more traumatic for, Mattie or us?! It is wildly painful to see your child in so much pain, for all of us to be so sleep deprived, for us to be battling cancer, and I could go on, but you get the picture. Mattie was a brave soul, and found a way to work with us and transitioned to the chair. He put some slight pressure on his right foot, which was amazing considering he just had major surgery. Once in the chair, Mattie needed two tylenol and then literally slept for three hours in the chair. The move was that tiring for him! It takes a lot to slow down Mattie, so it should give you some idea of the magnitude of effort it took on Mattie's behalf to accomplish what he did today!

While resting for three hours, Linda came to visit. Linda isn't in the hospital normally on a sunday, but she was meeting a Brownie troop here who was visiting the hospital. Linda spent some time with us and we told Linda about how Mattie managed his transition to a chair. It is always wonderful to chat with Linda, and to hear her insights about Mattie and our situation.

By 4pm, we needed to transition Mattie back to his chair. Again, all four of us convened for this event. What an event it was. I found the transition back to bed much more debilitating. So much so, that after the transition, I had to sit down. I closed the hospital door, and closed the lights. I was in a terrible mood, and just wanted to barricade the door. I wanted to hear from no one and just wanted a minute of peace, to forget for a minute what our life has become. But who am I kidding, peace and quiet in the hospital is literally impossible. I think I got about five minutes to myself. I sat down because my back hurt, my arms hurt, and my stomach wasn't far behind.

My parents came to visit Mattie this afternoon, and were given a less than pleasant greeting from Mattie. Not that Mattie doesn't love them, or appreciate their visit, but on some level Mattie wants to control who can come into his room and spend time with him. He knows yelling at them is safe, so he was very nasty and told them to leave. Mattie can do this now to the people he loves, which can be very hurtful and depressing to experience. He does this to Peter and I as well, which we have learned to process and understand. But I can assure you it isn't a good feeling. So I could tell my parents were upset, and I spoke to Mattie about this. They separated for a while, and during this time my good friend, Amany came to visit. Amany spent time with my parents and we had a good time catching up with her. Amany has many talents, and as an empathetic mental health professional, her energy seemed to cut all the tension we were all feeling. In the midst of all of this, a nurse came to Mattie's door and delivered a gift to us from the Lee Family. Julia Lee is a RCC mom and friend, and she dropped off the book, Harry Potter for Mattie. We opened up the gift and the card, and the book began to change the tone of the evening. I asked Mattie if he would he like to hear Pop Pop read the book to him. At first he said no, but then I told him he never heard Pop Pop read a book before. My dad has a way of making the serious sound hysterical. So my mom and dad came back into the room, and the story of Harry Potter tranformed the tone of the room. Talk about magical, and bringing a book to life!

Mattie also had a special visit from Liza, one of our favorite volunteers. If you read the blog last night, then you know that Liza reminds me of Glinda the good witch from the Wizard of Oz. She is simply delightful and has a beautiful smile and demeanor. This was not a scheduled volunteer night for Liza, but none the less she came to the hospital and bought some books out of her own pocket for Mattie. She wants to start reading to Mattie on a regular basis. Can you believe the generosity of such a lovely young person? So after my dad made a hysterical mess out of the first couple of pages of Harry Potter, Liza took over. Mattie laughed for at least 20 minutes while hearing my dad read. At the moment, Liza is still here reading to Mattie. I just can't get over a young person who would give up her sunday evening for a child she doesn't know that well. I chalk it up to Mattie's magic and Liza being a special individual! Thank you Liza for all the wonderful books you brought Mattie.

We want to thank the Holm family for a wonderful dinner and coming by to say hi. Both Sarah and Annie are about the cutiest little girls and they were listening attentively as I was telling them about Mattie's day. I also want to thank my friend, Amany for coming by and also bringing us some food today and the remote control cars (one of Mattie's favorite things to play with). All the food is appreciated, and we thank the Bentsen, Holm, and Aridi family for keeping us nourished today!

On an aside, it is funny, one of the shopping bags that I saw today was from the restaurant, Panera. I noticed it has a holiday theme on the outside of the bag. Living in the time warp that I am in, I was stunned to see the bag. It doesn't feel remotely close to a holiday for me, and to me Thanksgiving and Christmas this year will feel like just another day in this long recovery process. In fact, I am on a holiday hiatus until Mattie gets better. When someone you love is sick, nothing feels, acts, tastes, or is the same anymore. It isn't depression it is just what it is!

I did get a lovely message from Emily W. Emily was one of Mattie's most recent babysitters. Emily wrote, "I have to tell you that I have been reading the blog as always but am more and more impressed with Mattie and also you and Peter everyday. There is no adult that would be able to handle Mattie's situation with such maturity, grace and dignity as Mattie does. How is it that a 6-year is more mature than most of us reading the blog!?? Honestly, everyday when I finish reading the blog I feel as though Mattie has taught me another lesson and set another standard for me to strive for. Incredible. Thank you for bringing such a hero into this world. There is not another person (child) who has touched and taught as many people as Mattie has...and there are no other people to thank than you and Peter. So, thank you."

In addition, I received an e-mail from Bunny Rodak (Rev. Rosemary's sister, Rev. Rosemary is the lower school chaplain at SSSAS). Bunny wrote, "The publisher of the Flightless Goose called me and said that the author and the illustrator (Husband and wife) would like to bring a signed copy to Mattie AND read it to him. I arranged for the purchase of the book, but I think the arrangements for presenting him with the book would definitely be better in your hands. Flightless Goose is a new, full-color, hardcover storybook for children. In the book, a goose becomes unable to fly and must learn to overcome the challenges of being different. Flightless Goose teaches important lessons to children about dealing with challenges such as disease, ailment, and disability. It also teaches about focusing on positive strengths, and how to treat people with respect and dignity. The book entertains as it educates. I sent Mattie's blogspot address to the authors so that they could follow his recovery, if they are able to find time. Mattie's courage is spreading inspiration everywhere. It is amazing how many people have been touched by him. I have his picture on my bulletin board, and when anyone asks about who he is, I share his story and ask for prayer."

I end tonight by thanking Joan Holden, Head of School at SSSAS, for her lovely phone call and message of support. She and the entire SSSAS community have and continue to be incredibly supportive. Thank you!

Saturday, November 15, 2008

Saturday, November 15, 2008

Thanks Charlie for today's quote of the day!

“When you have come to the edge
Of all light that you know
And are about to drop off into the darkness
Of the unknown,
Faith is knowing
One of two things will happen:
There will be something solid to stand on or
You will be taught to fly” - Patrick Overton

I agree with this quote, Peter and I are learning to stand on the solid ground provided by all of you. Thank goodness our something 'solid' is SO SOLID!

Mattie had a restless night of sleep on friday. He was very good at advocating for himself with his nurse. He asked her for more pain medication, told her on a scale of 1 to 10 how much pain he had each time, and throughout the night he would ask her for either water or to wipe his face. I tried to help him most of the night, but there were a couple of times, I was just too tired to move. This morning, Bob came to visit Mattie around 9am. Mattie had a dressing change on all of his surgerical sites, and also had all drainage tubes removed. This sounds easy to do in theory, but it isn't. Mattie was scared, crying, and at times hysterically calling out for pain medication. Like Bob predicted, Mattie told him that he hated him and he was the world's worst person. Fortunately Bob prepared me for this so I wasn't as startled by Mattie's reaction. Of course it makes sense, anyone bringing about this much pain on you, would most likely not be your favorite person. But Bob handled all of Mattie's screaming and just kept calmly working. Mattie's incisions all look good, but I see what Bob is saying. The fear factor will be something that we will have to work through with Mattie. I try to put myself in Mattie's shoes, and imagine just how scared and painful all of this is. I too would be frightened to use these body parts after such a surgery, so I know we will have to work through some of these things before Mattie will probably engage in physical therapy. Bob decided that Mattie should rest today since his body parts were manipulated quite well during the dressing changes. Therefore, we will try getting Mattie out of bed tomorrow. The good part though is that Mattie wants to get out of bed! I view that as a real positive. But after I witnessed this dressing change today, I am so glad I made the decision to give the surgerical resident his walking papers. It was hard enough for Bob to do this, someone Mattie trusts, I can only imagine how traumatic this would have been with a complete stranger who came unprepared since he had no dressing materials and pain medication with him!



At around 10:30am, Peter had a surprise visit from some friends who were going to take him out to brunch for his birthday. I am so happy that Peter got to leave the hospital for a little bit and celebrate this moment with some friends. Before the guys left the hospital, I took a picture of them. I don't think this would have crossed their minds, but I told them I wanted to document this special moment. Pictured from left to right is Chris Crowder, Tom Disantis, John Bonds, Peter, and Rob Frye. Peter told me he had a great time and had a lot of good laughs. Laughter is definitely the best medicine! Thanks John for helping coordinate this.



Mattie had a visit today from his buddy, Alex (a friend of his from RCC), and his mom, Julie. Julie brought Mattie a vanilla shake. Mattie drank most of the shake which was a great start to his eating plan today. Alex did a great job at understanding how Mattie felt, and did not seem taken a back by Mattie's physical condition. Alex brought several movies to watch with Mattie, but Mattie wasn't in the mood. They worked in parallel today, they were aware of each other, but Mattie wasn't able to connect today. At times I thought Mattie wanted Alex to leave, but when I presented this option, he said he wanted Alex to stay. Thank you Julie for a nice lunch (delicious cake) and a good chat! I think it is hard for Mattie to reconnect with his friends, and at times I am not sure who I feel more sorry for, observing Mattie unable to play with his friends like he used to, or the shock and fear I imagine Mattie's friends feeling with what they are observing. Either case, it is just a terrible situation for a six year old to have to deal with, and for us to have to live through.

I had the pleasure of meeting Christine O'Connor today. Christine is a friend of Bob Glennon's. Bob is a RCC parent and friend of ours. Bob affectionately calls himself the Bob #2 in our lives. It is a joke that Bob and I have going, since we know that Bob Henshaw is Bob #1 in our lives. In any case, Christine is a nurse and has worked at NIH and now at SOME. Christine is a lovely and sensitive individual, who follows Mattie's blog regularly. Though I never met Christine before today, I can say that Mattie's blog has yet again connected me with another lovely individual. Christine generously offered her nursing skills and input to me when I take Mattie home next week. Christine also brought Mattie a gift. Thank you Christine for the wonderful magnets, Mattie will really enjoy these. Thanks Bob #2 for introducing me to Christine. There is certainly an enormous amount of sadness associated with Mattie's illness, but the new connections and people we are meeting through the process is an indescribable feeling.

It is funny, while I was talking to Christine and Julie, I realized that while in the midst of caring for Mattie I have no time to reflect on anything. In a way that is a blessing. Because if I truly felt the reality of this situation, I probably couldn't function each day. After all, how do you function when you are living an inhumane existence? That may sound like an extreme word to use, inhumane, but trust me that is the nicest word I can use to describe the situation. We live a very powerless and uncontrollable life at the moment, and the worst of which is we as parents can't protect Mattie the way that we would like. Mattie is forced to grow up quickly, and he is seeing sides of life that I wouldn't wish upon most adults.

This afternoon, Mattie hit a wall of pain. He was maxed out on his pain meds, and yet he was still whimpering in pain. Normally I try to work this out with the staff at Georgetown, but I was frazzled and tired, and when this happens, guess who I call? If you guessed Ann, good guess. I called Ann, who put Bob on the phone immediately. I told Bob about my concerns who then spoke to Mattie's nurse about pain options. Mattie was given an ice pack for his arm today as well as tylenol. Mattie is not a compliant oral medicine taker and he refused liquid tylenol. However, I travel around with crewable tylenol that Julie gave me a month ago. Mattie's nurse, Jane, approved these chewable tylenols, and Mattie took two. About 30 minutes later, he was feeling better, and was playing with my mom and Liza (one of our favorite volunteers). Liza is a former ballet dancer, and has the most charming voice. She reminds me of Billie Burke (aka, Glinda the good witch in the Wizard of Oz movie). As I explained to Jane, Mattie's nurse, I believe Mattie has a HIGH treshold for pain. Afterall, Mattie was walking around with a huge tumor in his right arm for weeks, and he never took pain medication. That defies understanding really! So even though he isn't screaming his head off, that doesn't mean his whimpering doesn't mean he is in pain. In fact, whimpering for Mattie means LOTS of pain. I felt the need to clarify that today.

Later in the day we had a great visit from Kristin Emory. Kristin is a RCC mom and a physical therapist. Kristin helped us tremendously. She helped us reposition Mattie in bed, who looked twisted and very uncomfortable. After Kristin moved Mattie around, he started to feel better, and I so appreciate her sharing her skills with us. In addition, Kristin made us a delicious dinner. Her lime flank steak was divine, and there isn't a piece left over, and thank you for the arugula salad, I almost forgot how much I love it! The brownies are gone too! Kristin has offered to help Mattie when we get home, and I really appreciate her and Katie Parker (another RCC mom and physical therapist) who want to help rehabilitate Mattie.

I received a nice and HUMOROUS e-mail today from my friend Susan. She wrote, "So I was cruising through my Webster's (Dictionary that is) in a vain attempt to improve my verbal skills. You won't believe what I saw!! I was so flabbergasted I just had to send it to you!! Well you, Peter, and Bionic Boy. Here it is:"
Courageous: Adjective
Possessing or displaying courage; able to face and deal with danger or fear without flinching. “Familiarity with danger makes a brave man braver but less daring.”-Herman Melville; “a frank courageous heart….triumphed over pain”-William Wordsworth; “set a courageous example by leading them safely into and out of enemy-held territory” [syn brave] [ant cowardly]
Example: see below

On the electronic front, we want to thank Tamra, Brian Boru, and Karen for your e-cards and e-mails. Mattie pitched a fit tonight and wanted to get out of bed. He is tired of lying down. He was complaining so much that Jane called Bob at home to get his approval. So we attempted to get him to sit up in a chair, but when Mattie realized he would need to be lifted and transferred by us, he then got very scared and refused to leave the bed. Pray for us tomorrow, as we attempt to motivate and help Mattie leave his bed for a chair. It is our hope that Mattie will be open to putting pressure on his leg so that he can at least stand. Jane, Mattie's nurse, has worked very hard with us for two days now. I told her to go home tonight and to get her rest, since we have a long day ahead of us with Mattie on sunday. Jane helped give Mattie a sponge bath today and to change his bed while Mattie was in the bed. It was a sight to see, and felt like mission impossible. But she was determined and helped us through it. I think the PICU here is experiencing something different. Many of the PICU nurses are having the opportunity to work with a HEM/ONC family and patient for the first time. We are definitely a different breed of patient from the typical PICU patient. Remember HEM/ONC patients spend a lot of time in the hospital, we are repeat customers, and in a way the nursing staff becomes our second family. The PICU staff are not used to this kind of relationship (most of their patients are one time visitors, and usually unconscious while in their rooms), but as Peter tells me, we are bringing the PICU nurses over to the dark side. Meaning, I believe they are becoming invested in Mattie and are getting used to taking a minute or two to connect and talk with us.

Friday, November 14, 2008

Friday, November 14, 2008

Message of the day: My friend, Charlie wrote, "I know you’ve asked in the blog why people are willing to help and reach out to you and your family - today’s quote may help explain this."
Trouble is part of your life - if you don't share it, you don't give the person who loves you a chance to love you enough. ~ Dinah Shore

It has been quite an exhausting day and I will do my best to recap it. Mattie started to have a lot of pain at 11pm on thursday. At that point his pain medication was raised back up, since it was lowered during the day on thursday. The increase in medication seemed to help Mattie a lot until 5:45am. What happened at that hour? Well a surgerical resident came in, turned on all the lights, and started talking to us, and then waking up Mattie. Mattie did not know what hit him. The resident told us he was going to take out Mattie's drainage tubes. Basically each place Mattie has an incision from surgery, has a tube that sucks out excess blood and fluid. The resident decided Mattie no longer needed these tubes. Sounds good in theory, right? Well fortunately I saw Bob take out one of these tubes from the last surgery, so I knew it involved a dressing change at the very least. There was NO way Mattie could tolerate this after being awakened and without more pain medication. So in my stupor I asked the resident if he consulted with Bob before proceeding. The resident said he hadn't spoken to Bob, at which point then, I told him the drainage tubes weren't coming out. Peter and I then dismissed him from the room, and then at that early hour we left a message for our patient advocate, Julie Andrews. Julie is a special and elegant lady, who reminds us of the famous Julie Andrews and Mary Poppins all rolled up into one. Julie came to visit me at 8am and I told her what transpired with this resident. I don't question the fact that the resident has to do his job, what I do question was his level of insensitivity in performing his job.

Mattie had a day which consistented of periodic pain, almost every two hours, he needed additional Fentanol to help relieve his arm pain. Mattie's nurse, Jane, has been on top of Mattie's pain all day, and has helped mitigate what could have been an even more challenging day. In the midst of all of this, Mattie had 'Linda time' today. Linda was kind enough to sit with Mattie this morning while Peter and I had a meeting with Dr. Shad. Dr. Shad it the director of the pediatric oncology practice at Georgetown. While we were at the meeting, Mattie had a wonderful time with Linda, and then Jenny and Jessie also came to visit. I heard they blew bubbles, and my joke with Linda is, I love when she blows bubbles in the room, because it gets the floor all wet, and literally it cleans the floor beautifully. So Mattie had moments of happiness today!

Peter and I had a very productive meeting with Dr. Shad. Denise, our social worker, was also in attendance. Dr. Shad understood our need to consult others about Mattie's treatment options post-surgery. Peter and I are finding that qualified professionals are presenting us with different treatment options mainly because the research literature is conflicted and there just isn't enough information out there about the effectiveness of these chemo drugs. Overall there appears to be a dearth of research out there about pediatric osteosarcoma treatment, and then factor in Mattie's condition, multifocal osteosarcoma, and we are talking about something simply not examined for the most part in the literature. Dr. Shad has agreed to summarize Mattie's medical case, and send it off to our colleagues all over the country and in several international locations as well. She plans on giving us a list of everyone she contacts and she will be presenting what she finds from these consultations at a November 24th tumor board meeting at Georgetown. We have asked Dr. Shad if we could attend this meeting as observers. She is checking on this for us. Peter and I both feel that Mattie's case is so unique and because of the conflicting input we are receiving, that it merits the kind of inquiry Dr. Shad is making.

After the meeting, I went back to Mattie's room, and about 30 minutes later, we had three visitors. The visitors were surgerical techs and a nurse who were involved in Mattie's surgery with Bob on wednesday. They came up to check on Mattie and to say a prayer. They gave Mattie some books, and said they will keep us in their thoughts and prayers. I found that so touching, but then again I think Mattie has a way of growing on people. After they left, Maureen, a third year medical student came to visit with me. Maureen was present during both of Mattie's surgeries with Bob. Maureen wanted to check on us, and I sensed she was more personally interested in us, than just being part of her job. We had a delightful conversation, and we talked about what life is like in the OR. She had glowing things to say about Bob, and so I can safely say I found another person to add to the Bob Henshaw fan club. The club is growing in number. I later spoke to Ann, Bob's wife/our team Mattie coordinator, and told her she had to hear what a medical student had to say about her husband. It was so lovely, and I felt that Ann should know (though I know she knows this already!) how well respected Bob is at Georgetown.

Ellen came to visit with us today and brought Peter and I lunch. Thank you! We really enjoyed the food and we know Mattie will love the gifts you brought him. Any device right now that he can engage in without too much use of his hands is appreciated! Thank you Ellen for running around getting us coffee and tea today! I also want to thank Alison, who has coordinated lunches and other things for us this week and continues to check in. Ann and Alison are wonderful coordinators and tag team well together. Again, this is a difficult week for Ann, because her husband is Mattie's surgeon. She wants to support us, but yet respects how complicated all of our relationships are with each other. Though Peter and I are VERY absorbed with what is going on with Mattie, we don't want any of our readers for one minute to think we don't appreciate what you are doing for us. We are very grateful.

This afternoon, Mattie had a visit from Chris, the fellow from the Georgetown Chemistry Club. Several Club members came and made ice cream, right inside Mattie's room. It was very neat, and we are happy to report that Mattie ate 8 teaspoons of vanilla ice cream. His only food since surgery. Chris always plans something fun, and it isn't only Mattie that looks forward to his visits! You can see a picture of the students making ice cream right at the base of Mattie's bed. Chris is the fellow holding the liquid nitrogen tank!

I had the pleasure of bumping into Miki today. Miki is one of Mattie's HEM/ONC nurses. Miki and I spoke about Mattie's 1000 cranes that were made for him this week by Kazu's family. Miki told me how special a gift this is, and the significance of the cranes in her Japanese culture. Miki then continued on to tell me how impressed she is with Peter and I. She told me under such circumstances she has seen marriages and families fall apart. But instead of breaking down, Peter and I are a force to be reckoned with. Her comment has stuck with me all day today, mainly because I hadn't thought about it. But she is right, the stresses we are under could break someone and/or a relationship down.

At the moment, I am sitting with Mattie on his bed. Mattie received more pain medication at 4pm. With the increased pain medication I am noticing Mattie is having nightmares again. Mattie wakes up scared, thinking he is seeing things, and a couple of times I have witnessed him catching himself and waking himself up out of a nightmare. Mattie seems to find comfort out of me being around and right next to him, so you can imagine I don't venture far from the room .

I received three e-mails which I would like to share with you. The first e-mail comes from Phyllis. Phyllis lives in Los Angeles and is a family friend. Phyllis wrote the following on the day of Mattie's surgery, "I think today was a very good day indeed. I know that you've been able to see God's hand in the day's progression but I wanted to give you a real, tangible example that you could cling to in times where His hand is not so evident. I composed a prayer request letter that I sent to my entire acting company of Christian actors and to my friends that I consider true "prayer warriors." I did my best to describe Mattie's situation as it has unfolded and why today was so crucial that I was reaching out to them for help. I gave them a list of five specific points to pray for. I want you to see the list so you will know how awesome our God is that He literally answers prayers verbatim-- using the same words of pronouncement as I did in my request.

Please pray:
1. For success in today’s surgery with no surprises;
2. For effective pain management after surgery;
3. For strength for Mattie’s parents, Vicki and Peter Brown, who are exhausted and facing incredible trials that are not likely to end soon;
4. For both Mattie’s near-term healing from surgery and long-term healing from cancer;
5. For the incredible support system the Browns have in place; that they may be blessed exponentially for their efforts and that their faithfulness will not wane in what is sure to be a long haul.
I see #1 being answered quite literally: A successful surgery and NO SURPRISES! And the precious nurses you described in PACU seem to be most welcome additions to your ever-growing support system; maybe we should just call all your many helpers the "Heavenly Hosts" because they are definitely a Godsend.

Regarding the mysterious feeling you experienced waiting for Mattie to come out of surgery: I might have some insight on that and you can see if this jives for you. I'm not sure if you know this, but I am a two-time survivor of breast cancer. During the surgery for my first bout with the disease, I wish somebody had been taking pictures of the procedure for me. It might explain why I awoke from anesthesia with two ruptured disks in my neck. Too long of a story to go into detail here but let's just say that another major surgery 2 weeks later to fuse my disks, 6 weeks in a neck brace, radiation, chemo and a year of physical therapy on top of being just 5 weeks into a new marriage was a tad overwhelming. Despite being a woman of faith, I found it almost impossible to pray for my situation. I couldn't focus. And yet, in some way I was insulated, almost cocoon-like, in a peaceful knowledge that for this season it was okay if I wasn't able to pray through my ordeal. Others were doing it for me. This is what I came to term as "Floating on the prayers of the Saints." You cannot ever purchase this most priceless form of transportation through time; it comes only as a gracious and merciful answer to the many prayers sent up to heaven on your behalf. I truly believe that on Wednesday you experienced the ultimate "E Ticket" ride of "Floating on the prayers of the Saints." I completely agree with Phyllis. It is hard to pray at this time, even though we do turn to God for help and reassurance. But most definitely we are and continue to float on the prayers of the Saints.

The second e-mail I received was from my friend, Susan. Susan wrote, "What great news about the surgery! Mattie is quite a trooper and inspiration as well. I believe that God gives all of us gifts that we are to use to help others. It seems that Mattie is using his gift now to reach people. How young to have so much of an impact on so many people, particularly adults."

The third e-mail came from a colleague and friend of Peter's, Tom. Tom wrote, "By the way, I noticed in one of the pictures scrolling at the top of the blog Mattie in a superman costume...I think you've got it wrong. I think superman wears a Mattie costume!" Tom, I think you may be right!

Overall, Mattie is holding his own, and many of his reactions are expected post-surgery. Such as higher blood pressure, imbalanced electolytes, pain, and the need for oxygen. There is just so much to balance, and even more to worry about for saturday, as this will be Mattie's first day out of bed since surgery. As a mom, I worry about pain. Bob is trying to help me understand that some pain is good. But I guess none of us really like to see our child in pain. Bob will be doing a dressing change and removing drainage tubes on saturday morning.

Thank you for all your e-mails and messages of support through this challenging time. I did want to thank my lifelong friend, Karen in NY. She contacted Father McManus in Scarsdale, NY. Father McManus was the priest who confirmed me in the Catholic religion and even married Peter and I. Karen told Father McManus about Mattie and what our family is struggling with. It is nice to know that the congregation at Our Lady of Fatima, where I grew up, is also praying for Mattie. Father McManus called me tonight as well. Thanks Karen!

We want to thank the Kane family tonight for a great dinner. Thank you for supporting us through a challenging week! Tomorrow should prove to be an interesting day! I end tonight with two quotes I received today. Thanks Charlie and Susan!

"The greatest healing therapy is friendship and love." Hubert Humphrey

"Loving is half of believing." Victor Hugo

Thursday, November 13, 2008

Thurday, November 13, 2008

Quote of the day (Thanks Liza!): Where there is faith, there is hope and where there is hope, there is everything.

Before I begin today's posting, and I will try to make it a continuous posting like yesterday, I want to wish Peter a very Happy Birthday! Unfortunately we are in the hospital, and Peter also has to work today, but we are celebrating his special and milestone day! Bob gave us a wonderful gift (being disease free at the moment!) for Peter's birthday. With this disease, we are learning to appreciate whatever gifts come our way, and take things one day at a time. HAPPY BIRTHDAY PETER!

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8:30am: Last night Mattie experienced some pain and Dr. Natarajan (the PICU intensivist) was on top of things. She changed the pain orders a bit, and had Mattie go on a continuous drip of Fentanol. Mattie is very sleepy today, but is without pain. I understand the importance of the first 48 hours post surgery, and I attended the PICU rounds this morning and heard how Mattie's case would be managed today. Mattie right now looks very puffy, and he is retaining more fluid than he is putting out. So they are giving him a diuretic to manage this issue. In addition, they are monitoring his lungs and it is their hope that decreasing the level of fentanol (a narcotic), will help with his breathing. He is also experiencing a fever and high blood pressure, but I feel that Mattie is being monitored very well, and is comfortable.

I was remiss last night, because I want to thank the Phillips family for a lovely dinner. After Mattie was finally settled for the night, we realized that we needed to eat something. Thank you so much for the great food and for supporting us last night!

I received so many wonderful e-mails yesterday! I agree with many of you, Mattie and Bob make a good team! I wanted to share an e-mail with you from my friend, Grace, an RCC mom. I am so happy to hear from many of you that you enjoy reading what others write to me. I find the e-mails all of you send to me so comforting and I am happy that you feel these e-mails connect you to others in our caring community.

Grace wrote, "Vicki and Peter -I am thinking of you so much this morning; Mattie will be in my constant prayers today. I know those will be the longest eight hours of your life, but here are some positive things to think of during that time. Vicki, you mentioned that Mattie said that he was bored of you and wanted someone else to be his mommy. Believe it or not, this is a compliment. Most children in Mattie's shoes would be so consumed by their illness that their every thought would be about their illness and what was in store for them as a result of the surgeries, etc. But you have done such an amazing job with Mattie by distracting him from and informing him about the medical issues he faces, that his biggest complaint to you is about being bored. Most kids in Mattie's position would be so angry at their parents for hooking them up to machines and giving them medicines that make them feel bad and submitting them to surgery that disables them. But instead, Mattie isn't sad or angry at you, he's just bored like any other kid. And believe me, on any given day, my kids would gladly trade me in for our wonderful babysitter. Babysitters and art therapists have the luxury of doing fun things with your child with no responsibility to do the hard stuff that parents must implement and enforce. Who wouldn't want to be with the person that only does fun things with them? Mattie's a smart guy and wants to capitalize on the fun he's having--bring on more art therapists with all their goodies and fun projects! Again, this is a wonderful tribute to you and is another example of you being so effective in distracting Mattie. He's not spending his time worrying about what's happening to him. He just wants to have more fun! He's having fun! That's incredible.I imagine you're worried about how the lack of mobility will affect Mattie's mood, outlook and recovery. But just look at how well he's adjusted to being confined to hospital already; again, he's having fun! Kids are very resilient and malleable, and Mattie mirrors your positive, calm attitude which is so important in the recovery process. And remember, you have had a huge network of friends and family helping you out, and you know what? We're not going anywhere. We're here for the duration; we're going to overstay our welcome, and you'll have to push us out before we leave, and then we'll do so kicking and screaming. We are a force so united and dedicated to helping you and Mattie through this. We'll collectively figure out ways to keep him entertained with his new physical challenges. You and Team Mattie are yin and yang; we compliment each other and thrive on each other's energy. Your strength and determination feed us such a positive energy that has caused us to literally refocus our lives and stop and reevaluate what's important and cherish our loved ones. We hug our children a little closer, a little longer and don't get quite so mad when the silly hurdles of life get in our way. And we in turn, hopefully succeed in returning the energy you give to us by helping you and Mattie stay entertained, well and upbeat. Try to focus on how happy Mattie is now and know that he'll stay that way because the things that are making him happy aren't going to change. Despite his new physical challenges, he'll still have the most fabulous parents on the planet and family, friends, and wonderful hospital staff who will dedicate themselves to keeping Mattie happy and strong. Lastly, God works in mysterious ways. I firmly believe She :-) is out there watching over your family. When I saw that stunningly beautiful sun painting that Mattie had created, I thought..it's the Resurrection Sun! That sun symbolizes so much-- not only your "son" as you mentioned, but the Resurrection sun, the symbol of where you found a good place for Mattie to go to school and established life-long friendships. Everything is coming together; Barack Obama could take a page from your book to see how people from different nations can come together as one and unite for a great cause. And Mattie is one great and wonderful cause, and we will never stop fighting for him.

11:00am: Dr. Synder came to visit Mattie today, and she suggested that Mattie get repositioned since he was hunched over and his hips looked very uncomfortable. She called Anna (Mattie's PT) and within minutes, Anna, Kris (Mattie's PICU nurse), Linda, Dr. Synder, and I were helping get Mattie repositioned. After about 30 minutes, we finally found a comfortable position. While repositioning Mattie vomitted, probably because we are moving fluids around in his lungs, which is a good thing. Mattie is now resting comfortably. But as usual, though Dr. Synder is not on call this week on the PICU floor, she made a special visit to say hi and to see how she could help us. We are very fortunate to have an outstanding PICU nurse helping us, and Anna and I are now strategizing ways to help Mattie physically move after he has two days of bed rest.

4:00pm: Well my intention was to write throughout the day, but Mattie's left hand is bothering him and he wants me to continually massage it all day. I haven't been able to leave the room today because he wants me around. I guess there is nothing like having a mom around when you aren't feeling well! Alison came to visit, in the hopes of giving me a break from the room, but Mattie needed me around so I did not leave. Thanks Alison for the hot tea (which is helpful since I am keeping Mattie's room at a frigid 65 degrees because of his fever), and for our good chat. At around 12:30pm today, Bob requested that Mattie's perineural pain management system be shut off in his arm. Mattie is unable to feel his left arm or have feeling or movement in his left hand. I assumed it was because Mattie had a bone graft in the left wrist, so I wasn't too concerned about this, until others around me showed concern. However, after the perineural was shut off for an hour, Mattie began to experience pain in his left arm, and slightly moved a finger on his left side. Bob is coming to visit Mattie later today, so I we will get his assessment of the situation. In the mean time, the buzz of Peter's birthday is around the hospital. Jenny designed a beautiful Red Sox greeting card (see the picture) for Peter and everyone signed it. Linda brought Peter balloons and cupcakes from the Georgetown Cupcake store (see the picture). So despite not being at home, the hospital staff is trying to make this day special. It is our home away from home. Thanks Jenny and Linda!

5:15pm: We had a visit this evening from Bob. Bob examined Mattie's hand and explained why Mattie is unable to move his fingers or have sensation in his left hand (other than the obvious of which Mattie had major surgery on his left wrist). While performing surgery on Mattie's wrist, Bob had to move aside a particular nerve, a nerve that is involved with hand movement. Bob explained that in order to maximize pain management, he placed the perineural near this nerve in question. Which would explain the numbness and inability to use the fingers in the hand. Mattie continues to rest comfortably and we are now settling down for the evening and headed to enjoy a lovely turkey meal sent to us by the Smith family (a SSSAS family, who we don't know officially, but I am beginning to see we are all a part of this greater family). Thank you also for the special cupcakes. We are celebrating tonight! You can never have enough cupcakes.

8:20pm: Mattie is resting peacefully, and Peter and I are simply exhausted. So we plan on winding down now. Though we have come to understand that you really can't sleep in a hospital, well unless you are medicated. In any case, we wanted you to know that Mattie is comfortable, Peter and I are eating cupcakes, and planning for our visit with Dr. Shad, the chief of the oncology practice at Georgetown tomorrow. It has been a full day, but we couldn't sign off for the evening without thanking all of you for your e-mails and support. In Grace's e-mail above she says that Peter and I inspire Team Mattie and others, but this inspiration goes two ways. I can't tell you how blessed we feel to know that we have all of you behind us and are walking this journey with us each day. The fact that Mattie's story has touched your life in some way and you keep visiting the blog is a special gift during a very challenging time for us.

Wednesday, November 12, 2008

Wednesday, November 12, 2008

Message of the day (thanks Susan!): "Faith consists in believing when it is beyond the power of reason to believe." Voltaire

8:15am: Mattie finally fell asleep at midnight, but was up at 4am, rather upset. So I got up and jumped into his hospital bed with him, and we attempted to rest until 6am. At 6am, the lights went on and vitals were taken. It was quite a good morning wake up call. We are in room 1 of the PICU which is a total experience, filled with noise, and basically almost impossible to sleep. We tried to prep Mattie for this morning, but he was very groggy at 6am. Linda came in early and used a projector to display an amazing light show of stars for Mattie, which he found fascinating and was a great distraction. Mattie handled the transition from the room down to the OR like a champ. Totally incredible fellow. In the pre-op area, Mattie was greeted by several doctors and nurses, this number of people is almost overwhelming at 6 something in the morning. You can see a picture of Mattie before being wheeled off to the OR, with a beautiful smile on his face. Peter was in his "bunny suit" because he headed into the OR with Mattie until he was sleep. We will try to keep you updated throughout the day about Mattie's progress.

10:30am/12:15pm: Melissa, our surgerical liaison called me at 10:30am, to let me know Mattie was stable and the surgery got underway at 9:05am. At 12:15pm, we had the opportunity to meet with Melissa. She let us know that Mattie continues to be stable, doing fine, and his left humerus tumor is now removed, and they are working on Mattie's right femur (by the knee). Bob told me this morning that the goal is to remove all three tumors today, but based on Mattie's condition during surgery and potentially if anything else arises, that this could change the course of the surgery. Meaning that Mattie may not have all three sites operated on today. At the moment, things are looking like they are on target.

Thanks Charlie for the inspirational quotes for today!

Where hope grows, miracles blossom. - Elna Rae
No matter how steep the mountain - the Lord is going to climb it with you. - Helen Steiner Rice
Faith is a bird that feels dawn breaking and sings while it is still dark. -Scandinavian Saying

2:45pm: I just got a phone call from Melissa. She told me she had good news. The news is that Mattie's arm and leg have been operated on, and the incisions are now closed. Bob is working on the wrist now. I have no estimate of time of completion, but the fact that Mattie continues to be stable and Bob is able to work on the third tumor is a positive sign.

4:30pm: Melissa called with an update. Bob is continuing to work on Mattie's wrist bone graft. But Mattie is holding his own and is stable!

5:20pm: Jane, the PICU charge nurse just checked in with Peter and I. She called the OR and Bob reports that the surgery will continue for another hour! Just wanted to keep all of you in the loop. THANK YOU, THANK YOU for staying posted and for all your messages today! We feel like we are in a time warp or fog at the moment.

5:45pm: Bob just paid us a visit to Mattie's room. Mattie is still in the OR and being stitched up. Bob said there were NO surprises. In Bob's words, Mattie is now disease free. Wow! Bob removed 12cm of bone in the femur and 12 cm of bone in the left humerus. He also took out 5cm from the fibula (a bone not really needed for walking and movement) in the right leg and put that into the left radius for the bone graft. Additionally, Bob engineered a piece of the humerus as a bridge between the different sized radius and fibula. Mattie will most likely be in the recovery room for a hour or so. So we still wait, pace, and wonder when we will see Mattie. But it was such a blessing to see Bob and to hear his report. Bob said he took pictures during surgery and will send some to Mattie.

6:40pm: Mattie is now out of surgery and in the PACU (post anesthesia care unit). We are trying to to get down there to comfort Mattie within 30 minutes or so. Another bit of positive news is that Bob was able to preserve the left arm's nerve and muscle, so Mattie's prospects for functioning in that arm should be much better.

7pm: Peter and I spoke with Toby (the PICU nursing manager) at 7pm and asked if we could visit Mattie in the PACU. Toby called and advocated on our behalf. Within minutes, he spoke to the staff in the PACU, and then he escorted us down. When we entered the PACU, Mattie was surrounded by three nurses. One nurse was more lovely than the next. They were outstanding, competent, and compassionate. They couldn't do enough for Mattie or us. What an amazing experience that was. Peter and I spent the next hour in the PACU until Mattie was stable enough to come upstairs.

8:30pm: Mattie got back to his room and was in pain. They have been giving him fentenol to manage the pain, and Dr. Natarajan (the PICU intensivist) was on the scene to help us and to get the PCA pump for Mattie. It is 10:20pm, the PCA pump has just arrived.

10:20pm: Mattie has developed a fever (not unlike what happened during the last surgery), and has been vomiting. So he is now on Zolfran (an anti-emetic). The goal for the night is to make him comfortable and to rest.

I am not sure how I would describe today. It felt like I was frozen in time, or living life in slow motion. The ten hours Mattie was gone and in the OR seemed like an eternity! If I did not know he was with Bob, I probably would have really been besides myself. But I am at peace with Bob. I think Bob is the best and most capable surgeon to work with Mattie (and as you know Mattie's case is unique and challenging). Bob has guided us correctly every step of the way, and to have faith in a doctor makes all the difference in the world. Once again, Bob performed a miracle today. God works in mysterious ways, and all the prayers and good wishes that have been directed toward Mattie today, were answered. I believe God channels his powers through us on earth, and Bob is one of those people who has received God's special talents and skills. When Bob came up to Mattie's room this evening, after 10 hours of surgery, I asked how he was. Bob responded, "do not worry about me." I told him I always worry about him, because if Bob isn't okay neither is Mattie. Bob laughed at that. Bob stayed after the surgery and met us in the PACU. In the PACU Bob shared with us an x-ray they took of Mattie's wrist after the graft was put in place. We got to keep these x-ray copies, and I am sure Mattie will simply love them. When I looked at the graft, one thing was very apparent, this was not only a medical miracle to see, but an engineering feat. It almost looked like Bob built a beautiful trestle train bridge to strengthen Mattie's wrist. Of course, I feel Bob is too humble to really tell me about his work, but I have a feeling not everyone could have designed what he put together today.

I am now sitting watching Mattie, and I am in awe of what he survived today. Three major surgeries in 10 hours! All I can say is wow! I know the road ahead for Mattie won't be easy, but there is something to be said for surviving such major surgeries. He is a fighter! Before I sign off tonight, I want to THANK all of you for your prayers, wishes, e-mails, messages, and concern that you expressed to us today. You all have empowered us through this very difficult day, and your comments are so touching and meaningful. Thank you for your support and not just for today, but for your steadfast commitment to go the distance with us.

Tuesday, November 11, 2008

Tuesday, November 11, 2008

Message of the day (Thanks Charlie!): "Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them." ~Vincent McNabb

Mattie woke up today and did not want to get out of his pajamas or leave the house. My parents came over toward the end of the morning and played with Mattie for a few hours. Mattie took everything out and by the time he was done it looked like there was an explosion of toys in his room. Fortunately Mattie was invited over for a playdate today with Charlotte, after school. That was a major motivator, and by 2:30pm, he complied with getting out of his PJs, washed up, and dressed. Thank goodness for friends!

Mattie had a wonderful playdate with Charlotte. They even walked to the upper school campus of SSSAS and ran around and built forts. Charlotte gave Mattie a wonderful Star Wars book and a solar powered keychain. While Ellen, Charlotte's mom, watched Mattie, I went out to lunch with my parents. While at lunch, Peter called me to let me know that Mattie's surgery had been bumped up to 7:30am, from the original 10:30am time schedule. So I immediately contacted Dr. Synder at Georgetown and asked her what we could do to get Mattie admitted to the hospital tonight. Dr. Synder made some phone calls and then she contacted me back and said we were all set.

When I picked Mattie up at Charlotte's, neither Mattie nor Charlotte wanted the playdate to end. Charlotte and Mattie were close buddies last year during kindergarten and it would be very natural and understandable if Charlotte moved on this year, and developed new friendships since Mattie no longer is at school. However, it is clear that Charlotte misses Mattie, and though she has other friends in her life, she hasn't forgotten about Mattie. They have a special connection, and as Mattie's mom, this warms my heart to know that Mattie in a way is irreplaceable in his friend's life. I know I feel this way about Mattie, but I am Mattie's mom. To see his friend feels this way is a special gift.

When we got back home tonight, I quickly packed things up for the hospital, and we had a lovely dinner thanks to the Goff-Glennon family! We loved all our Cheesecake Factory goodies! Thank you for a nice send off to the hospital. The chocolate cheesecake was the perfect medicine! When we arrived at the hospital, our room wasn't ready. It wasn't clean, nor was there a bed in it. So we carted all of our bags to the family lounge and hung out there for 90 minutes. While in the family room, I bumped into a woman I know from the Giant supermarket I go to near Mattie's school. She came up to talk with me, and let me know that her grandson was in the hospital. By the time she told me about her grandson, who is only 5, I felt like I had no problems what so ever. That should give you some understanding for the nature of her grandson's issues. He was born with no eyes, a half of a brain, unable to walk, respiratory issues, and I could go on, but I think you get the point. How a parent comes to deal with this, is beyond me. Here I am worrying about when will Mattie walk again, and in comparison to this family's issues, at least I know that Mattie will eventually be able to walk.

We finally got into Mattie's room tonight, and Melba, Mattie's HEM/ONC nurse delivered Mattie a special gift. The gift was dropped off by Kazu and his family. Kazu is a buddy of Mattie's from SSSAS. Kazu's mom and her family is from Japan. When we opened up the gift, it was simply amazing. It was 1000 origami cranes made with love by Kazu and his mom. Kazu's grandmother then put all the cranes together in a thread, one by one, praying for Mattie's strength and recovery. These cranes are truly beautiful! I have had the pleasure of trying to make an origami crane, and I know how hard it is, it is a labor of love! The fact that Kazu's family made Mattie 1000 cranes leaves me speechless. In Japan, these cranes signify a wish, and by giving Mattie these cranes Kazu's family is symbolically wishing for Mattie's successful surgery and recovery. Thank you so much for this very touching and symbolic gift. It will come with us on each hospital visit, and we hope its wish will come true! Below you will see pictures of these beautiful rainbow cranes, a gift never to be forgotten. Kazu's dad, Tad, wrote the following tonight about the cranes: "May these cranes take wing and reach those around the world who would join us in praying for Mattie."

I want to thank Team Mattie for having a planning meeting at Ann Henshaw's house last night. I hear the meeting was very successful, and I can not thank Ann enough for being our outstanding Team Coordinator. I hear the Team brainstormed some wonderful ways to help Mattie and it is incredible that through Mattie's illness so many talented individuals from our various lives (RCC, SSSAS, and GW) can be pulled together to create something so meaningful! Thank you for all your support, and thank you Carrie for hosting a bake sale at the upcoming Alexandria City Soccer Tournaments this weekend!

On the electronic front, we want to thank Susan, Linda, Kim, Cousin Donna, Cousin Rosalinda, Ms. Pollak, Karen, and Emily W. for all your wonderful e-cards and wishes for tomorrow. They are all appreciated! As we head into tomorrow, please say a prayer and keep Mattie in your thoughts. He heads into surgery at 7:30am and will be in the OR for at least 8 hours. As I did last time, I will try to do periodic updates on the blog throughout the day. Thank you for all your support, messages, and love. I end tonight with a quote sent to me by my friend Charlie: "Once you choose hope, anything's possible." ~ Christopher Reeve

Monday, November 10, 2008

Monday, November 10, 2008

The message of the day (Thanks Ann!): If God brings you to it, He will bring you through it. I hope so, I am counting on it!

Mattie slept through the night on sunday, and woke up in a good mood today. He sat through a central line dressing change this morning and was okay with the fact that he had a clinic appointment today. He always checks with me to find out if he is going in for just a check up or whether he is getting admitted to the hospital. When he arrived at the clinic, he was looking for Jenny and Jessie and found them and instantanously got them involved in a project. Jessie and Jenny have been accumulating boxes for Mattie. One of his favorite mediums to work with. He literally pulled out every cardboard box possible, and before I knew it he was creating. However, what he was creating today, in my book, was down right creepy. He created a huge life size model of a cockroach, and then designed a castle for this roach to live in. Don't ask me where he gets these ideas, but I think he loves to gross me out. Below you will see the roach and its house, I am sharing it with you because misery likes company.

Jenny downloaded a picture of a roach from the Internet, and then Mattie and Jenny designed the model magic roach!

The lovely model on top of Mattie's head!

Every roach deserves to live in a castle don't you think? Mattie's roach castle includes a staircase, and plush pillow accomodations!
Yuck!!!!!!!!!!!!!!!!

Mattie had a good clinic visit, and had his vitals taken, several blood tests completed (in preparation for his surgery on wednesday), and had an exam with Dr. Synder and a third year medical student. It is always fascinating to meet medical students and see how they deal with Mattie. Today Mattie turned to the student and said, "who on earth are you?" We all broke out in laughter and he put her through her paces. In addition, Dr. Toretsky came to visit us and I spoke with him about some of my concerns regarding Mattie's chemo treatment post surgery.

After our clinic visit, which mind you we were there from 11:30am until 2pm (because Mattie loves visiting with Jenny and Jessie), my parents and I decided to get something to eat. Mattie was starving by that point and said he could eat a "whole pig." Interesting! He ate very well at lunch and had fun chatting with us and coloring. When we arrived home, Mattie showed Grammie and Pop Pop his Christmas pooch that lights up. I described this new light as a Scooby Doo light yesterday, but in all reality this pooch looks more like JJ (naturally, no?). So we have renamed our new friend, "Christmas JJ." Below is a picture of Christmas JJ, who will be added to the Christmas light display this year.

Mattie also received a special package today from Susan DeLaurentis. Susan is Mattie's school counselor. In the large envelope Mattie found some great Thanksgiving joke cards from all the first graders in Mrs. Knowles' class! They were darling, thank you Mrs. Knowles' class. In addition, Susan included a wonderful turkey hat for Mattie to wear to get him in the holiday mood. I personally love Mattie as a turkey, how about you?

I don't know about you, but when you look at Mattie in these pictures, he looks like the picture of health to me. He looks happy and spirited, and from an outsider's point of view, you probably wouldn't guess the kind of torture he is living through. The beauty of his mind and spirit fascinate and impress me.

I would like to share two e-mails I received today with you. The first one is from Prof. Honey Nashman at GW. Honey is one of my supervisors. Honey wrote, "We wanted to let you know that STUDENTS in all of the Spring classes in our Human Services program are dedicating their service learning hours to "the spirit of healing and love for Mattie." Students who don't even need hours have offered to volunteer. Thank you Honey and the wonderful Human Services' students at GW! Your thoughtfulness means a great deal to us.

The second e-mail comes from Debbie Pollak. As many of you already know, Debbie is Mattie's art teacher at SSSAS and helped him create the beautiful sun painting on saturday. Debbie wrote, "About the painting......... I went to the Piazza (her studio) to put a coat of gloss medium on it last night. It was totally dark, peaceful, and silent as I put the keys in the door. I could sense that I would be overwhelmed when I saw the painting again. When I put the lights on, I could hear Mattie's squeals of delight as he was painting. I slowly put the medium on my brush and very carefully stroked it on the canvas. The tears rolled down my cheeks. I could not stop them. I did not try. His painting is a magnificent tribute to the strength, light, and joy that fills your little boy. I feel so privileged to have been the witness to this magical event. I was so happy assisting him, it was like I was floating with the angels, watching over him. It was the gift that keeps on giving. How can I thank you and Peter for sharing Mattie's time with me? This most precious time. As I sat in the silence of the night I just stared at the painting and decided it needs to be framed. I am taking it to my framer. When I put the lights out, I swear I could still see light coming from the painting. I walked down the stairs and felt blessed, incredibly blessed." I wanted to include, with Debbie's permission, a part of her e-mail to me today, because I want you to understand the depths of her compassion and love for Mattie, and she is committed to being a part of his recovery process. Thank you Debbie, the way you describe this painting glowing is almost spiritual in a way.

On the electronic front, we want to thank Brian Boru, Grammie, Kim, Susan, Coach Dave and Karen for your wonderful e-mails and e-cards! Also we want to acknowlege Michelle Idle (a former RCC mom) for sending us an adaptive homemade shirt that Mattie will be able to use post-surgery. Michelle has opened up a whole new world for me, because prior to my e-mail exchanges I was wondering what on earth to dress Mattie in. So tonight the count down begins. We have one more full day before heading back to the hospital for major limb savaging surgery. So some extent I understand that these surgeries have to happen, it is Mattie's only chance at survival, but on the other hand, it is so painful to see such a beautiful little body and skin all cut up. It is a harsh reality, and one I never thought I would have to face at this point in my life.

Sunday, November 9, 2008

Sunday, November 9, 2008

Mattie woke up before all of us today. In fact, he managed to slide out of bed without assistance, and came over to my side and tugged at me until I woke up. I did not understand why he was up so early. But after he woke Peter up as well, Peter clued me in that he promised to take Mattie Christmas light shopping at Target today. Apparently Mattie did not forget this promise from last night, and was VERY motivated to check out lights. In a way, it was a glorious feeling to have a quiet moment this morning while getting dressed without juggling 20 other things in the background. When Mattie came back from Target, he couldn't wait to show me his purchases. He picked out a Scooby Doo Christmas light, and felt that would be a good addition to the growing Christmas light display that Peter and Mattie assemble in our complex each Christmas. When I tell you that these guys light up our area with lights, that would be an understatement. If you ever watched the TV show, Home Improvement, then when I tell that Peter's display rivals Tim the Toolman Taylor's, I am not kidding. Mattie is very much looking forward to decorating this year. In addition to this Scooby Doo purchase, Mattie also bought me a gift. He knows how much I love lighthouses, and he bought me a beautiful Christmas lighthouse that actually lights up. I took two pictures of it, so you can grasp what it looks like. I love the picture I took of the lighthouse in the dark, because you can see Mattie's silhouette in the background staring at the glow. There is something magical about lights!

Later in the morning, Mattie had a playdate with his buddies Campbell and Livi. When Mattie got to Campbell's house, he started the playdate slowly and acted a little shy, but that did not last long, because Campbell proceeded to ask Mattie what he wanted to do, and the next thing I knew, all three kids were in the backyard playing with straw and leaves. Mattie LOVES leaves! Thank you Christine and James for taking care of Mattie for most of the afternoon, so that I could have some quiet time. While Mattie was having fun, eating pizza, and watching videos, Peter was home building a ramp onto our outside deck in preparation for Mattie coming home from the hospital in a wheelchair. Though this sounds like a chore, and it is, I know Peter enjoyed working outside in the fresh air, and building something. One of Peter's many great skills! I on the other hand spent these several hours by going out to lunch by myself. Prior to Mattie's illness this wouldn't be a way I would normally spend my free time, but spending time alone right now is a gift. Since I rarely have a minute by myself to just breathe. At lunch, I brought a stack of research articles I have been trying to read for the past two weeks. These articles relate to Mattie's chemotherapy options. Peter and I are tired of getting second hand information, so thanks to GW's databases, we have been searching and accumulating research articles as it relates to some of the major questions we are trying to answer. However, whenever I try to read them, I am too tired. Today was my moment, and I am pleased to say mission accomplished. However, while out eating and reading, I couldn't help but listen to other conversations around me. Not like I was trying to do this, it just happens. In any case, behind me were two women eating with each other and chatting about life. Their conversation caught my attention when one of them said to the other that she was okay if she had to die tomorrow. In fact, she said that she wasn't afraid to die, just of the process. Now I probably should tell you that both of these women were fine, not ill, and were having or attempting to have an existential dialogue. However, the conversation lost me when this woman continued on by saying that she hopes when she dies people will say that she was a special person, and that she made a difference in their lives. She went on to tell her friend about a recent funeral she attended where in the eulogy people were saying glowing remarks about the deceased. She said she hoped that this would happen for her as well. I don't know about you, but since I have now been forced to deal with the potential risk of losing my son, this whole conversation and the tone of the message truly irritated me. It irritated me because she is talking about life in such a matter of fact way. Is she really ready to die tomorrow? I think she can say this because she knows she is not, in addition, her reasoning for dying and what she would get out of it disturbed me even further. What could have been a meaningful dialogue between friends, became something self serving and insensitive.

When I arrived back at Campbell's house to pick Mattie up, he wasn't ready to leave. So Christine and I had tea together while the kids continued their play. I was so bothered by this conversation I over heard at the restaurant, that I shared it with Christine. Thanks Christine for a lovely afternoon, and for the opportunity to reconnect. I miss those after school moments!

My parents wanted to take all of us out to dinner tonight, but when Mattie got home he started to cry and he did not want to go out. What he really wanted to do was help Peter complete the building of the ramp. So Peter accomodated Mattie, and stayed home with him and they enjoyed the pizza JJ brought to them! Thanks JJ, we all need such a helpful puppy in our lives. My parents and I went out to dinner and by the time we got home the ramp was completed. Mattie was very proud of his accomplishment. It has been a weekend of building and creating for Mattie. Below is a picture of the ramp.

Also Mattie had an evening of building swings and car ramps out of plastic tinkertoys. I am happy Peter and Mattie had this time together to build and play.

I received a lovely e-mail from my a former student of mine today. Thank you Mary. Mary wrote, "You mentioned generosity, Your generosity in letting us into your world, as you go through this life altering event, cannot be overestimated too. You are reminding us daily about what is really important. Thanks." Thank you Mary for this lovely message. One thing is for certain, when such an illness hits your life, you re-evaluate everything, and I have found I have become even more bold in my statements and feelings (if that is possible), because what on earth do I have to lose? Nothing else seems to matter at this point in time.

On the electronic front, we want to thank Brian Boru, Karen, Kim, Lorraine, and Susan for your lovely e-cards. They cheered up our day! As we head into monday, I can't help but feel a sense of nervousness about wednesday. It is hard to describe this feeling, but it seems like yesterday we were released from the hospital and now seconds later we are heading right back. I think we spend more time in the hospital than at home. Each time we head off to the hospital, I wonder what on earth gets Mattie to return there? For the most part he is compliant and doesn't question why he needs to keep going back. That to me alone is remarkable, because if I were his age I would be kicking and screaming all the way there! I could come up with several theories for this mature behavior, but I think having "his ladies" there is a great motivator!