Saturday, November 22, 2008

Saturday, November 22, 2008

Quote of the day: Charlie wrote to me, "This quote sounded so much like Thursday's blog I had to send it. Sometimes I read the blog and wonder at the strength of your resolve and I thank God for his wisdom in making you Mattie's mother."
When you come to the end of your rope, tie a knot, and hang on.
~Franklin D. Roosevelt

Mattie woke up at 4am today in pain. He took his oral pain medication, and fell back asleep. Mattie is sleeping in a hospital bed in our living room. So in essence our living room as been converted into Mattie's new room. Peter slept on an aeromattress last night, on the living room rug. Peter wanted last night to be special for Mattie, and planned a boy's night 'camp out' in the living room. I think Mattie loved this excitement!


We all slept until 10am this morning. That is how exhausted we are. I haven't slept through the night in the last 10 days, so it felt great! Mattie ate well this morning, and then he had a visit from JP, JJ's (our resident Jack Russell Terrier) owner. JJ dropped off some vanilla frosted donuts to welcome Mattie back home! Mattie then got washed up a bit and dressed. I was worried about the dressing process. But Mattie can now move his hips and back quite well. So he was very helpful in the dressing process. Mattie is adjusting to being home, but he continues to need my attention, or Peter's 100% of the time. My parents wanted to give us a break today, but Mattie did not want us to leave. Now to the outside observer, I am sure you could be saying to yourself, well this isn't realistic. You have to say NO to Mattie and convince him to stay with others. Or better yet, you have to take care of yourself in order to take care of Mattie. I know this line very well, I have said it to enough people in my lifetime. However, like other caregivers used to say to me, it is easier said than done. I feel Peter and I are really between a rock and a hard place. Mattie is in a fragile place, having to deal with cancer, hospitals, medications, chemo, lab testing, and a total lack of freedom. I realize being around Peter and I gives him great comfort. Yet I also know that Peter and I are worn out. So the question is how do you meet Mattie's needs and our needs at the same time? It is a question I struggle with each day. It is my hope as Mattie settles into being back home and a more normal routine that he begins to open up to others in his life again. It saddens me to see Mattie transform in front of my eyes. Despite his changes, I try to remain consistent, and no matter what he throws at me, I accept it, love him, and try to help him through it.


This afternoon, Peter went to pick up Patches, our calico cat at the vet. Patches has been boarded at the vet for the past 50 days! When she went into the vet for boarding, she was very sickly, was off of her thyroid medication (since Peter and I could bearly handle Mattie, much less handle her medical needs), and was about 8 pounds (very small!). Today when Peter picked her up, they did not want to give her back to us. They grew SO fond of her. She has become the Grand Dame of Dupont Animal Clinic. We thought Patches deserved to spend Thanksgiving with us. She returns back to the clinic next saturday, but we figured a week at home is better than no week at all. Patches came home today weighing 13 pounds and her coat looks beautiful and she is happy! Though locking up your pet isn't an easy thing to do, in the end, we can't be worried about her and her medical issues. I tell you this story because cancer affects the whole family, the family pet included. At the moment while I write this blog, Mattie is lying in his bed and Patches is right by his feet. It is a very sweet sight!

Mattie and Peter went for a stroll outside today in the cold. We felt Mattie needed some fresh air and a change of scenery. While they went out, my parents and I went out to lunch. It was nice to get out, but I always feel bad leaving Peter behind. Peter tells me to go since I am on point all week long, but I feel for Peter. He isn't only working full time, but he is a caregiver and a devoted dad.


Mattie and Peter spent the afternoon building with legos and doing puzzles. Mattie continues to amaze me. Tonight I transferred him back to bed by myself. Peter was next to me, but Mattie did most of the work, and I held him by the rump and ribs. I now feel more confident in the fact that I can do this alone. As we head into next week, I want to make sure Mattie does get outpatient physical therapy and we keep up with his progress. Meanwhile, Dr. Synder (our oncologist) and I have been trading e-mails today. She has asked me to take a picture of Mattie's red spot on his tail bone each day and e-mail it to her. I can only imagine what GW's system administrator would say if he/she opened up the pictures I am sending through the virtual airways. None the less, Dr. Synder is doing me a favor. She is tracking the sore on Mattie's back, without me having to bring him in for a visit. Another example of how technology is helping our lives! Because moving Mattie into a car, is a production now.


We want to thank the Cooper family for a wonderful homecooked meal. The apple turnovers are appreciated too. Mattie was thrilled to see the Scooby Doo mac and cheese, and thank you for sending along a little gift for Mattie. I can't thank all of you for providing us meals every day of the week. It is so wonderful not to have to worry about food on top of everything else. I know how busy life is on a daily basis even when you are not contending with illness, yet you all find the time to bring us food and support us in any way possible. A mere thank you, seems so inadequate. Ann also called today to check in to find out how we were doing and what we needed. Thank you Ann and Team Mattie for the daily support.


I would like to share three e-mails I received. One is from Carolyn (a friend and RCC mom). Carolyn wrote, "As I read your posting from last night I continue to be in complete awe of Mattie and his strength, determination – and, of course, sense of humor (I love the names for his arms & legs). Yet another example of the miracles that faith, love and prayer can create. And I hope that “Super Mattie” and “Super Mom & Dad” had a restful evening. Just so you know – the Queen of Apostles community continues to spread the word – and your “prayer circle” continues to grow. I had asked a few parents/teachers to say some extra prayers prior to Mattie’s surgery – and was amazed when I attended the school auction last weekend – so many people were coming up to me asking how Mattie was doing or commenting that they had been checking on Mattie on the blog – people that I have never mentioned your situation to and did not include in my e-mail request for prayers (so the word got around). I was told that many of them passed it along to their families and friends and have added Mattie to prayer lists and masses all across the country. Based on how well Mattie is doing now, God was certainly listening – I think he was probably a bit overwhelmed. You all are amazing – and you have no idea how many lives you have touched and improved by sharing your story. You all are an inspiration to us all – and we continue to pray that your journey forward has few “bumps in the road” as possible."


The second e-mail is from my friend, Lisa. Lisa wrote, "Vicki, I so appreciate the son you and Peter have raised, and no doubt you have it right that Mattie is a wonderment. But don't lose sight of the "whole is greater then the sum of its parts." And the strength and incredibleness that he exudes is clearly a result of your family system; i.e., you and Peter."

The third e-mail is from a SSSAS upper school mom. We have never met, but Mattie and her share something in common. They both have cancer in their lives. Kathryn wrote, "You are doing so well, even though it may not feel like that. You are running a marathon and that is so hard and enervating on you and Mattie. I am awed by your strength and courage, not to mention your honesty in your blogs. I think a big source of strength is the ability to admit when you are stressed and tapped out. I want to bring you some restorative items that helped me during cancer when I get back from being away on Thanksgiving. They may help or may not. At least you will have them. We are away visiting our older son who is studying in Perugia, but I just wanted to let you know that I got a rosary for Mattie at St. Peter's in the Vatican. I wanted Mattie to have one from a sacred place." Kathryn has also arranged for an intentions mass at Holy Trinity in Georgetown for Mattie on tuesday, November 25 at 7am. Thank you Kathryn for arranging this, we will be there in spirit.

We want to thank Brian Boru (our feline friend) for the lovely gold snowflake he sent Mattie in the mail. We also want to thank GW's Columbian Women's Association for the lovely card and McDonalds gift cards for Mattie. He will love them! Mattie's grandparents in Boston also sent us a lovely card today with a very generous contribution to the Mattie fund. Thank you for supporting us and Mattie's treatment.

On the electronic front, we want to thank Karen, Grammie, Barbsie, JJ, Ms. Pollak, and Brian Boru for the wonderful e-mails and e-cards. Mattie is now settling down for the evening, and watching Scooby Doo. We sign off and hope for another good night of sleep.

Friday, November 21, 2008

Friday, November 21, 2008

The Message of the Day: FATHER KNOWS BEST!

Peter had a long talk with Mattie this morning about the need to give me some time to myself when I need it. He explained to Mattie that if I get sick, then our family would have a big problem. A message delivered from a dad to his son has a big impact! Mattie had a good day, and transferred to his chair very well. While in the chair, we played a lot on the computer. We did matching and shape games, and even read about the life cycle of a frog as well as other interesting science facts (e.g., how fish breathe). Thank goodness for the internet, it really puts the world at your finger tips, which is even more crucial when chair bound. Linda spent some time with Mattie today and he enjoyed building a dinosaur with her. The chemistry club came by as well and created a volcano right before our eyes, made out of detergent, baking soda, and vinegar). I took a picture of Mattie typing on the computer today with his powerful left leg (aka George! Bob and Mattie named all his limbs today. It was a riot!). In addition, Linda captured Mattie and I watching the chemistry club's experiment.

Mattie has been on a cheese stick frenzy. Tricia (one of Mattie's favorite HEM/ONC nurses), joked with him that he was going to turn into a cheese stick from eating so much cheese. I am just happy he is eating something. The nurses on our 10 day stay at the hospital were just incredible! Last night I went out of Mattie's room to get some ice, and I passed many of Mattie's nurses in the hallway, both PICU and HEM/ONC included. I stopped to chat with them, and they truly are our family away from home. We are very lucky to have such wonderful nurses caring for us, who responded immediately to all of Mattie's pain management issues. It was a long 10 days, but what a fine group of women we were surrounded by.

This afternoon, Bob came to visit to do a dressing change for Mattie. If you recall, Mattie's last dressing change was a fiasco. Mattie was yelling at Bob and telling him he was the worst person in the world. Today, we gave Mattie some medication for anxiety and pain before Bob arrived. We felt he had been through a lot this week, and needed nothing else to further traumatize him. Bob and Mattie have a great rapport, and I wish I tape recorded their dialogue today. Linda, Tricia, and I thought it was an absolute riot! Bob named all of Mattie's limbs. It was an excellent distraction for Mattie, just so you know, Mattie's legs are called Steve and George, and his arms are Sam and Harold. Bob started with Mattie's right leg bandage. Mattie handled this quite well, and checked out his scar. The next thing Bob did was brilliant. I do believe that Bob was giving his sound medical opinion, but from a psychological perspective, Bob energized Mattie. Bob told Mattie that his leg looked great, and was really healing. Bob then asked Mattie to lift up his leg (since Bob saw the picture of Mattie raising his leg on the blog, he knew he could do this!) without the immoblizer on. Mattie did it with no problem. Bob then told Mattie that he is doing so well, that he no longer needs to wear the immobilizer. Now this was a shock to all of us, since Bob prepared us for a 2-3 week duration for wearing the immobilizer. The power of suggestion is a fascinating thing to observe. Mattie soaked up all of Bob's comments today. I did not understand just how much was absorbed until I got home tonight. Mattie's arm dressing change was a little more complicated, but still went beautifully! Before Bob changed Mattie's dressing today, he asked Mattie if he wanted to go home. Mattie was indifferent. Bob asked Mattie again after the dressing change was successfully complete, and Mattie definitively said YES. Interesting, no?!

Bob called me before he came to the hospital. He told me that medically Mattie could go home today, but he wanted to make sure I was comfortable with taking care of Mattie. So he was open to us staying longer at the hospital. However, Bob has been following the emotional changes Mattie has made this week at the hospital, and he explained to me that a change of scenery may actually help with this intense behavior we are experiencing. Earlier in the day Peter told me that he felt Mattie was ready to go home, and certainly we needed to get out of the hospital for our mental sanity. But I was uncertain about everything! When Bob asked Mattie a second time whether he wanted to go home, and Mattie emphatically said yes, I had to respect that. Dr. Synder came to visit Mattie and I and she observed me transferring Mattie. Dr. Synder was concerned about me and understood my hesitation. I so appreciate her support! But in the end, Father Does Know Best! Peter was right, Mattie was indeed ready to go home. Keep reading to understand why I am saying this!

We were discharged from the hospital today at 7pm. Anna (Mattie's PT) helped me with strategizing how to get Mattie in the car and gave me pointers about tranferring Mattie. Linda and my parents helped us get packed up and we really needed two cars to do this. Thanks Linda for staying late to help us! Mattie is unable to get into Peter's Explorer, but he can fit into my Passat, because my front passenger seat can be pushed down flat, and while Mattie is sitting in the back seat, he can prop up his right leg on the passenger seat. Needless to say, I was very nervous about leaving the hospital. The car transfer went fine, even though it was freezing outside and dark. When we got home we unpacked a bit, and Mattie devoured three pieces of pizza. We want to thank the Frye family for all the wonderful pizzas. Not a piece is left! Mattie loved the card too. After Mattie ate, he wanted to be transferred to the bed. My parents helped set up the bed with us, and purchased a special foam pad for Mattie's mattress, since he has the start of a bed sore. In any case, what I saw next simply amazed me. Mattie basically helped himself out of the wheelchair, and stood up. That is right! He stood up WITHOUT assistance. What is with this kid?! I am still shocked, just after 10 days of major surgery. We spotted him and helped him into the bed, but this transfer was a breeze! I hope I don't jinx anything by writing this, but I am deeply impressed and in awe with Mattie. The ironic part is before Bob left the hospital today, he said that Mattie was progressing so well, that he thought that the next time Mattie went back to the hospital, he would be walking in rather than being in a wheelchair. Wow, I still can't get over that either. What can you say about Bob? How do you thank a person who has made your son cancer free? I don't know, words doesn't express it, but today he performed his third miracle (after the two surgeries that is). He empowered Mattie to believe that his leg is strong enough to stand and walk on!

So we are settling into being home. I still have unpacking to do. But we are thrilled not to have our midnight, 4am, and 6am vital checks! Dr. Toretsky also came to visit us tonight, and he gave me an update of all the oncologists he has contacted around the country for opinions on Mattie's case. All this information I find very reassuring. These opinions will be discussed at a tumor board meeting on monday at Georgetown, and then on tuesday, Peter and I will meet with Drs. Toretsky and Synder to hear the outcome of the tumor board meeting in order to make the big decision about Mattie's chemo options post surgery. As I sign off tonight, I want to thank all of you who stood by us these past 10 days, and throughout this journey so far.

Thursday, November 20, 2008

Thursday, November 20, 2008

Mattie had a better night of sleep on wednesday. For survival purposes though, Peter and I do tag team during the nights, because sometimes one of us is just too tired to deal with Mattie's care and needs. We seem to share that responsibility well, but none the less, even if Mattie is sleeping well, there are people walking in and out of the room throughout the night, which makes a restfull sleep almost impossible.

Mattie went to bed close to 1am, and when he woke up at 9am, he was in pain. His nurse administered him more pain medication, and then he slept until 11am. At 11, Anna, his PT, came to help Mattie out of bed. Mattie is getting better at using his own body to sit up and try to reach the edge of the bed to stand up. Mattie even seemed to put pressure on his right leg. Once in the chair, Mattie did some leg exercises with Anna. However, he wasn't up to doing his arm exercises, or in all reality I think Mattie just decided he did not want to do the exercises. While in the chair, he wasn't sure what he wanted to do. But when all else fails with Mattie, you just need to get out the legos. So I helped him create a Star Wars troop transport. It is amazing to see the left leg and the right hand working so hard together to accomplish a task yet trying to do legos with a child who has limbs bandaged is a total challenge. At one point Mattie asked why Legos doesn't build toys for children recovering from surgery? Definitely a good question. Mattie did get frustrated while building but I reminded him that these limitations were all temporary. In the midst of building, Lesley came by to say hi. But Mattie wasn't open to playing, he wanted my attention and wasn't happy until he got it. As Mattie settled down, Sally the story lady came by. Sally was dressed as a pilgrim, and was here to put us in the Thanksgiving day mood. Sally read two stories to Mattie, one was "Stone Soup," and the other was the "Old Lady who swallowed the pie." Mattie enjoyed both and he remembered the second book from preschool. Sally has a real gift for telling a story, and she captured all of our attention today.

Linda came in to spend some time with Mattie today. Mattie allowed me to leave the room only to locate a type of cheese he wanted to eat. He couldn't wait for my parents to bring him cheese, he wanted it instanteously. So I ran around Georgetown's campus trying to track down this cheese. Mattie did make it clear though that he wants me to eat lunch in his room, and not leave the room for the remaining time he is at the hospital. So I did not get a hall pass today!


Mattie and I continued building on his lego set today. What could have taken him minutes to create in the past, takes him hours now. But that is okay with me, I want him to take the time to try to assemble it himself with help. We are in no rush, after all what else do we have to do all day long? In a way, this is the one positive in all of this (and believe me I have to dig deep to look for the positive). There are no work deadlines or other outside factors putting time pressures on us. So we can enjoy playing in the moment, and not worry about jumping from one activity to another. While we were building with legos, Dr. Toretsky came to visit us. But I had a difficult time talking with him because Mattie was screaming, "mommy, mommy, mommy!" the entire time. Mattie's insistence for constant attention is growing tiresome, which is why I agree with Peter. We need a scenery change. If Bob thinks Mattie can go home friday or saturday, then we will leave the hospital. As of tomorrow, we will be in the hospital 10 days straight, and the routine, lack of privacy, and no sleep is getting to all of us.


My parents came to visit Mattie today, and Linda helped to set up a movie type environment in his room, so that he could screen a Scooby Doo movie and we could all enjoy it with him. Thank you Linda for all the extra effort you put in setting this up! Mattie loved it and after the movie we watched several youtube videos about the "lyre bird," and several muppet show clips.

We want to thank the Bentsen family today for a lovely lunch and the great X's and O's banner for Mattie's bed. It is on his foot board now. It reminds him how many people love him. We also thank the Issaccson family for a wonderful dinner and the fabulous pumpkin and chocolate treats! We are settling down for the evening, and Peter and I just changed Mattie's central line dressing. Mattie was not happy about this dressing change, because in the past he used his hands to help remove the dressing with me but now he can't help and he did not like this lack of control, but we accomplished it with a lot of screaming. Tomorrow we are preparing Mattie for a dressing change of his arm and leg bandages. Hopefully that will go smoother for Mattie. At the moment Mattie is running a low grade fever, and I called Bob about this. Bob said not to worry about it since it wasn't high enough to cause alarm. However, I really believe that Mattie's level of activity now is wiping him out and also I see a relationship between movement and the development of a fever by the end of the day. It happened wednesday night as well, but Mattie had no fever all day today, until this evening (after more activity).

On the electronic front, we want to thank Karen, Grammie, and Barbsie for the e-cards and e-mails. I am signing off because I can bearly keep my eyes open, much less write coherently. I thank all of you for your e-mails of support and for being loyal bloggers.

Wednesday, November 19, 2008

Wednesday, November 19, 2008

Messages of the day! Thank you Debbie P. and Charlie!
"Life is God's gift to you......what you do with your life is your gift to God."

"Faith is the light that guides you through the darkness."

Sometimes I think if I did not write the blog, there would be NO way I could keep track of time. If someone did a mental status exam on me, I would probably fail it (I am somewhat kidding of course!). I am disoriented to time and place most days. In fact, if I did not write the blog, I wouldn't care to know what date it is, what time it is, or even be able to remember one day from the next. There is no predictability to the days anymore, and the lack of predictability only brings about more stress, and a certain degree of frustration and numbness.

Mattie had a wild tuesday night. He did not get to sleep until 1am, and then was up on the hour. He was complaining of pain. In addition to the pain, which is hard enough to deal with, Mattie whines, and becomes super agitated and demanding. Certainly one can take an hour or so of this behavior, but a whole night of this on top of our already depleted state was over the top. Peter and I are super patient, but last night broke us down. We could see ourselves getting frustrated at each other and at Mattie. At one point last night I was so tired that the idea of jumping up one more minute to ask for pain medication for Mattie, to comfort Mattie, to administer the pain medication (if it is oral meds, I am the only one Mattie will take it from), and to get Mattie back to sleep (which involves massaging his hand) seemed all too overwhelming. However, while I took a minute to regroup my emotions and sat down, I stopped, looked over at Mattie, and could see him quietly crying to himself (since he did not want to bother us one more minute). Well, the mom instinct kicked in, and I flew out of my chair, and found whatever energy I had to muster to get the job done. We were dealing with two nurses last night, a HEM/ONC nurse in training and Ellen (one of our trusted and faithful HEM/ONC nurses). By 6am, I had it, and when Ellen walked in the room, I told her it had been a terrible night, and she could see I was worn out. She moved into action, and got Mattie morphine and he slept from 6:30am until 9:30am. That was a royal blessing. Mattie's expression on his face last night is one that I won't forget any time soon. To see a six year old sitting in bed, in pain, and crying to himself, but quietly doing so as not to disturb us, just broke my heart. He on some level knows that Peter and I are tired, and that his behavior (though rightfully justified since he was in so much pain!) can be wearing. I just couldn't get over that in the midst of his pain, he was thinking about us.

The other issue I am dealing with is Mattie refuses most visitors these days. He has no problem throwing people out, pouting, and ignoring questions coming his way. When I confronted him about this today, it appears that the main issue is he feels that others distract my attention from him. He says he wants to play with me and basically wants my 100% and undivided attention. Mind you, this is very sweet and a royal compliment, but it also isn't realistic. When I stepped outside the room this afternoon to talk to a mom from RCC, Mattie pitched a fit and when I came back in the room, he said that he will not believe anything I tell him ever again. That I break my promises when I tell him that I am going to spend time with him. Of course, within minutes he blew passed this sentiment, but at times I feel embarrased by Mattie's behaviors to family and friends. I realize I have to get over that, and others understand on some level Mattie's reactions.
Mattie had a visit from Ann today. Ann came bearing lots of things and gifts. Thank you Ann for a wonderful lunch, and Mattie is enjoying the Scooby Doo mac and cheese. The other meal of choice this week. Mattie ate an entire vanilla frosted donut too, so the one donut a day principle is back into effect. Ann always finds something to engage Mattie in, and today she brought him a present that when submerged in water, turned into a Christmas wash cloth. It was adorable, and got Mattie talking about Christmas. Then they worked on a "grow your own pirate treasure." Basically you place a 'grow toy' in a large container with water and after 10 days of soaking, the toy will transform up to 600% its size. Mattie is looking forward to examining this treasure each day! Ann also brought Mattie an eyeglass straw. Ann snapped some pictures of me demonstrating the glasses to Mattie. Thanks Ann for your wonderful banana bread too!

Anna, Mattie's physical therapist, came today to help Mattie transfer from bed to a chair. The transfer went smoother today, and Ann was there helping us as well. While in the chair, Mattie had a very active day! Ann entertained Mattie for a little while so I could eat lunch, but Mattie doesn't like me straying far or for long, if at all. Ann and I got out the floam that Mattie received from Margaret this weekend, and Mattie started to work with the floam using his right hand. It was excellent physical therapy for Mattie, and he even used the floam to cover some plastic animals. It was thrilling to see him use his hand so productively! The fun continued when Lesley and Whitney came to visit, and they were in amazement of the floam activity.

This afternoon, we had a visit from Liza M. Liza brought Mattie some homemade pumpkin butterscotch heart shaped muffins. Mattie demolished one later this afternoon. He said it was delicious. Mattie is into bread products this week! Liza also gave Mattie a card game that I look forward to playing it with him, and Liza gave me a lovely door hanger that says, "where there is faith, there is hope and where there is hope there is everything." What a beautiful sentiment! Liza shared with me that Katie (her daughter) and Tyler (Charlotte's brother) are brainstorming another fundraiser for Mattie geared toward teens. Thank you Katie and Tyler for supporting Mattie and caring for him so deeply.

Later in the day, we had a visit from Katie Parker, a RCC mom, and a physical therapist. Katie shared some great resources with me and Anna (PT) as we try to figure out all the best rehab options for Mattie. Thank you Katie for coming and for bringing us a nice dinner. Also a shake for Mattie and I were such nice treats!

Anna came back later in the day to help us transfer Mattie back to bed. The transferring back to bed is always more challenging, but Mattie was a trooper. In addition to the transfer, Catherine, Mattie's nurse, placed a fentanol transdermal patch on Mattie's back. This will help to safely maintain this pain. Mattie is also developing a redness patch on his back, not a bed sore yet, but a redness, and while he was sitting at the edge of the bed, Mattie was able to get some cream on it. Once Mattie was back in bed, Anna helped Mattie do some more exercises. Mattie was able to use his right hand to do some fishing using the magnet fish that Jenny and Jessie made for Mattie. Mattie was able to do some great exercises and with Anna's help she was able to help Mattie put his hand to his mouth. In addition, Mattie has a new development. He can rotate his ankle on his right leg, and he can also lift up his right leg. If this is not the picture of hope and determination, I don't know what is! I introduce you to the unstoppable Mattie Brown!

I also want to thank Kathie Stoltzfus, Mattie's former occupational therapist, for consulting with Jenny and Jessie on activities that they can do to get Mattie to appropriately use his body parts. Kathie really understands Mattie and if anyone can come up with activities for him, it will be Kathie.

After the transfer back into bed, Mattie took a nap for about two hours. During this time, we had a visit from Jerry and Nancy, our favorite volunteer duo, and then Dr. Synder came by to check in. We spoke with Dr. Synder about some of the questions we have about how to proceed with Mattie's chemo treatment. On November 25, Peter and I have a meeting with Dr. Toretsky and Dr. Synder to discuss post surgery treatment options.

Today I received a lovely e-mail from Lesley, a good friend of my sister-in-law's, that I would like to share with you. Lesley wrote, "I was struck when looking at your picture of the blankets on Mattie. I remember Max being wrapped in those when he was first born and was put in my arms. It seems fitting that Mattie's bionic limbs are wrapped in the same cloth that is given to newborns. The intensity of which you are functioning between lack of sleep, watching his food intake, as well as bowel movements are challenges that all mothers can comprehend at one time or another. The difference is that you do this work for your six year old while maintaining his dignity. This is a balance that most could not meet. Mattie's ability to handle the 12 horrific things that have entered his body and the desire to have you nearby just speaks to a relationship/bond that most humans never experience." I agree, it would be very easy to want to baby Mattie, but finding the right balance of care and yet independence is a challenge. But Lesley's comment about the baby blanket, also caught my attention. I remember coming home from the hospital after delivering Mattie with many of these little blankets. I had no idea I would be seeing these blankets again on Mattie in this context. After all who would want to imagine this nightmare happening to their baby?

On the electronic front, I want to thank Kim, Brian Boru, Karen, Emily W., Liza B., and Grammie for your e-mails and e-cards. As I sign off for the evening, I am happy to report that Mattie seems comfortable and is watching his new found favorite TV channel, Animal Planet! It appears that the Fentanol patch that Bob prescribed today is working wonders for Mattie, and I hope this is the start of a good night for us.

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!