The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
November 29, 2008
Friday was another rough night. Mattie continues to have night terrors. However, it is not just one time during the night, these episodes occur from 1am until 5:30am. I saw the same sleeping pattern on thursday night that I saw on friday night. At 2:30am, Mattie's screaming was so loud, that it woke Peter up and he came running down from our bedroom upstairs. Peter could also see that Mattie was disoriented and was speaking nonsense while he appeared awake. Needless to say Peter and I are exhausted, which is not a good position to be in with the chemo cycle we begin on monday.
It is no surprise with the level of stress, tension, the emotional rollercoaster we live from moment to moment, and sleep deprivation that one of us is now ill. Peter came down with a violent stomach illness today. I know a stomach bug is going around, and unfortunately Peter got it. He is worn out, tired, and not feeling well. So I have told him to rest and stay upstairs today. Not an easy thing for Peter to do, since he always wants to help and ease the load around here with Mattie.
In addition, to worrying about Peter, I am concerned about Mattie's night terrors. So much so that I felt I needed to do something about it. Some people call 911 when they have a problem, I just e-mail Ann. Ann told me to call Bob at home. So I did! Bob discussed the night terrors with me, and he concluded that they could be caused from Mattie's prolonged usage of fentanyl, which is a narcotic. Bob prescribed something different for Mattie today. However, because this drug is also a narcotic, Bob couldn't call the prescription into the pharmacy. I needed to actually have a written prescription in hand to take to the pharmacy. So I immediately called my parents and told them they had to come over to help me. A last minute request that only a parent couldn't refuse! I told Mattie that he better behave himself with his grandparents because Peter is sick and I had to pick up a prescription at Bob's house. When my parents arrived, so did Sandra, our in home nurse. By now you already know what Sandra came to examine, that's right, the tail bone ulcer. Mattie cooperated and showed her his sore. At this point, he is probably so used to all of us looking at his tail bone, it is becoming second nature for him. After Sandra left, I jumped into the car and headed to Ann and Bob's house. Bob talked me through the pain medicine regimen and then I also asked him for his input about our monday chemo decision. I believe Peter and I have heard enough information to know what we need to do, which is adding I and E. We can't ever regret that we did not treat this as aggressively as possible and we may not get a second chance to make such a big impression on this disease.
Mattie and I spent the afternoon building all sorts of puzzles together. He even played with this flexible tube Kathie gave him yesterday. He was exercising and did not even know it! He even moved his left arm today. He literally lifted it up on his arm rail of his wheelchair. I view that as progress. It is hard to describe what our days are like, they are more like big blurs, where we can't distinguish morning from night time. Since we basically do the same things all hours of the day. My parents came back this evening to visit Mattie. They were expecting Mattie to ignore them again or yell at them, but instead he started to play with them. They built a puzzle together, had some dinner, and are now working on his Mac computer that Mary Dressendorfer, from SSSAS, has allowed him to borrow this year. He is working on designing all sorts of things using Kidpix and having a good time. I view this as good hand exercise as well!
On the electronic front, we want to thank Lorraine, Brian Boru, Emily W., Ms. Pollak, and Grammie for your wonderful e-mails and e-cards. I also want to thank Kathryn for lighting a candle for Mattie at the Duomo in Florence today. We also want to thank Susan D. (Mattie's school counselor) for the wonderful singing Thanksgiving day card and Barbsie for the wonderful "Shut the Box" game. We are looking forward to playing it together. As we head into sunday, we know that we have so much to accomplish to get ready for monday. A day that has come too quickly, and we really need another week to continue to recuperate. I only wonder what Mattie's emotional state will be like next week once we add chemo to his already fragile condition. Thank you for your thoughts and prayers, they are all appreciated and continue to be so needed.
November 28, 2008
The second e-mail is from my good friend, Lorraine. Lorraine wrote, "I hope that God is listening very very closely to every single person blogging, emailing, sending, visiting, thinking, listening, hoping, caring, and wishing that Mattie's Thanksgiving next year will be joyously celebrated knowing Mattie is running around happy, pain free, healthy, and just being a special 7 year old boy, whom we all want to get better NOW." This is my wish too Lorraine!
The third e-mail is from Kathryn, a SSSAS upper school mom. Kathryn wrote, "The last time I was able to get on, I saw that Mattie was in a great deal of pain. I hope that is getting better now. I am praying for him and have lit candles in a church in Perugia, where my son is, and at the Tomb of St. Francis of Assisi in Assisi. I was also able to get a Mass said for him at that church in Assisi. I will bring you back the card. I wish I had better access to know how you all are doing but please know I am thinking of you. I have a little memento of St. Francis for Mattie. Please take the best of care. I continue to be in awe of your strength and courage. My college age son is also praying for Mattie. He was so very sorry to hear of all he is going through. I send a beacon of light to you from Florence where I am sure to light another candle for Mattie and you all. Please know, as I am sure you do on this Thanksgiving holiday, that you are not alone. We all are here for you in any way possible."
On the electronic front, we want to thank Emily W., Karen, and Brian Boru for all the wonderful e-cards! As we head into the weekend, our chemo decision weighs heavier on us. I can't believe how fast a week at home goes and the simple fact that we return to the hospital on monday for 6 days of chemo!
November 27, 2008
November 26, 2008
Quote of the day (Thanks Grace!): "Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense." ~ Winston Churchill
We had an interesting night of sleep on tuesday. Mattie woke up screaming at 1am from a bad dream. He was screaming so loudly, I could hear it from upstairs with the bedroom door closed. Peter has been taking night duty since we got home from the hospital, but I wonder how long he can maintain this schedule while working full time? But I digress. So I jumped up at 1am, and went down to see what was the matter. Mattie awoke disoriented a bit and swore there were people around him trying to do things to him. I can only imagine who these folks are in his dreams! If this were a jeopardy category item, we would all know the question was is Mattie dreaming about doctors and nurses?!! It is always fascinating to see how the brain processes what we are dealing with in our lives while we sleep. In any case, once Mattie became more alert and realized no one else was around him except us and Patches, he went back to sleep. But at 3am, there was a major accident on Route 66 right outside our window. It is alarming to be awoken to tires skidding and then a smashing sound. In addition, the crash sent the car's horn off and it wouldn't stop. Things started to get under control on the car front once Peter called 911!
Mattie slept in this morning and did not wake up until 10am. At 10am, he wanted to get out of bed and be transferred to his chair. I got him some fresh clothes and also wanted to wash him up a bit and brush his teeth. Mattie has become very jumpy as it comes to being touched. He refuses to have a washcloth touch him, and he doesn't like the idea of a toothbrush in his mouth. I explained to him the importance of doing this, and attempted to have him direct the cleaning process. But that did not work. I know that there could be some manipulation on Mattie's part about this issue, but prior to developing cancer, Mattie always liked to be clean. The apple doesn't fall far from the tree. Now a simple touch causes panic, pain, and a lot of tears. Mattie eventually got dressed and I assisted him as he moved from the bed to the chair. But basically he is doing all the hard work now himself. He can stand and shuffles his feet.
My mom came over this morning, and we all looked at Karen's turkeys together. They are amazing works of art, and we still haven't seen all of them yet. Examining the turkeys was a great ice breaker for Mattie and he was engaged in what he was seeing until there was a knock at the door. My mom answered the door, and it was Sandra, our in home nurse. She had come back today because she needed to examine Mattie's tail bone ulcer and also wanted to put a bandage on it, since it is getting larger. Mattie took one look at Sandra and went into instantaneous panic. Mattie kept telling Sandra to get out. He was screaming, but not just your usual yelling and tantrum, this was a yelling with total fear in his eyes. It was very hard to remain calm through this 40 minute ordeal, but I did. I tried to convince Mattie for 30 minutes that Sandra just had to look at his back sore, that she wasn't going to touch it. Mattie wouldn't hear of it. He attempted to kick Sandra away. Sandra told me she couldn't leave without physically seeing the sore, despite the fact that I have pictures of the sore. I take pictures everyday for Dr. Synder. In any case, she said if he did not comply, we would have to physically pick him up from the wheelchair and put him in bed on his side so she could examine the sore. I did not want this to happen and begged Mattie to simply cooperate. But he did not. So the next minute, before he knew it Sandra and I picked him up from the chair and put him on the bed and I held him down so he could be examined. He was downright hysterical, and in a way, I felt like I was the villian, stripping him of his rights. He told us no, and yet we did it. It may sound like my interpretation is too harsh. But once this was all over, Mattie told me he hated me and couldn't trust me. He told me to stay far away from him, and I had to walk out of the apartment for a bit. When I walked out, I took Sandra with me. I told her that I would never do this again. I can't afford to be the "bad" person. Today I betrayed Mattie's trust, and I won't be put into that position again. Sandra understood, but then Sandra told me she is worried about me because Mattie's emotional outbursts are huge and hard to handle. She admitted to me, that when I told her on the phone that you have to approach Mattie a certain way, and that there would be no way she could take his bandages off, she told me she thought I was being overprotective, or in her words a "wuss." But after what she observed she commended me on my patience, and even keel. She told me I remained firm, but loving. It isn't easy to do when your child is down right hysterical and at times irrational. She told me she was going to call Mattie's doctor and recommend he be placed on anti-anxiety medication. I told her I could appreciate why she felt this way, but that I would need to think about this and I have throughout the day. Needless to say, I was worn out by 1pm. The day could have been over for us at that point, and I would have be okay with that.
After Sandra left, I came in and apologized to Mattie. I told him I could imagine that he was very upset with me, and that I assured him if he tells me he is afraid to do something in the future, I would listen to him, and that I wouldn't be helping a nurse pin him down to a bed. He absorbed everything I said, and calmed down. We both took a deep breath and then Mattie said he felt like having waffles. I couldn't deny that request, so out came the waffle maker. We had a peaceful hour or two, and then Peter came home so that I could go to the dentist. Peter walked in with two packages. One package was huge, Mattie is always intrigued with large boxes. When we opened the box out popped four helium balloons, one with Scooby Doo on it. Mattie's eyes grew larger and he just loved the balloons. The balloons were from Team Mattie. Thanks Team Mattie, you have no idea how needed these balloons were today! Thank you for welcoming us home. The second box was a beautiful fruit basket from Carla, my former clinical supervisor and now friend. Thank you Carla for the Thanksgiving day wishes.
I cancelled my dentist appointment three times already and I decided to attempt to go today. When I got to the office, I told the hygienist and the dentist what I was contending with. Through my conversation I learned about my hygienist's husband's near death experience and I also learned my dentist is dealing with bone marrow cancer. One thing I observe is once others hear our family is dealing with cancer, most people are willing to confide and share things with us that maybe they wouldn't have before. It is almost like others do not have to put up pretenses or walls anymore because we are already seeing the worst life has to offer and we don't want to be judged and therefore wouldn't judge someone else. In many cases I am seeing the depths and fullness of people like I never have before. While at the dentist office, I received a phone call from Catherine, our nurse case manager. Catherine is working on getting Mattie a better mattress at home to prevent more sores from developing. In addition, we talked about anti-anxiety medication. Catherine received a phone call from Sandra today, and Catherine and Dr. Synder wanted to know how I wanted to proceed. They know my hesitation to add any more drugs into Mattie's system. I told them I would consider anti-anxiety medication on an as needed basis, but I don't feel he has anxiety per se. His anxiety is so situational, almost like a phobia. Caused by the fear of others about to touch him or enter his space. His lack of total control over his space and environment. Frankly I think any of us would be anxious under such conditions. I remember always telling my students that under the right circumstances anyone can develop a diagnosable mental illness. I am seeing this being played out right before my eyes.
While I was at the dentist, Dan (Mattie's in home PT) came to have a session with Mattie. Mattie's initial visit with Dan did not go well, because Mattie wasn't cooperating or even listening. But Dan and Peter worked hard with Mattie today. Mattie bought into the process. Dan used a very effective reward system where Mattie got to pick out baseball cards if he successfully did something. Dan got Mattie up and walking a few steps today. He got Mattie's right arm working and his leg kicking. I am just sorry I missed it, but I fully admit there are times having Peter around versus me inspires Mattie to do certain things. PT is one of them! Dan is planning on coming back on sunday, but I am very pleased to hear of the progress they made together. Dan has me laughing, he can't get over how we know Katie P., Kristin E. (two excellent physical therapists who Dan happens to know and they are both invested in Mattie's PT recovery) and Bob Henshaw all from RCC. He keeps saying, "this must be some preschool."
I agree, it is some preschool. I am so thankful that such a place like RCC exists in the world and that we were fortunate to be a part of it for two years.
This evening Mattie had a yogurt craving. He wanted a particular kind. So I put on my coat and walked to the store to get it. When Mattie was diagnosed with cancer in August, it seems my life stopped. I am frozen in time. Even though I literally know it is November, to me we are still living in August. I mention this because when I went outside today and entered the grocery store (another thing I haven't done in ages) I heard the song, "O Christmas Tree." I was taken aback. My body is telling me it is cold outside, but my head is saying it is summer time. I then noticed Christmas lights popping up in places around our complex. I just stopped and thought where did the last three months of our lives go? This is more of a rhetorical question, because we all know the answer.
I received a lovely e-mail today from Grace (a friend and a RCC mom) that I wanted to share it with you. Grace wrote, "It must be so difficult to see Mattie struggling and frustrated. But never doubt your decisions. Between your intelligence and incredible research, you should have no doubt that you did the right thing in having Mattie undergo the four surgeries. As I said before, you haven't made a wrong move yet, and you've had many, many decisions to make along this road. That's some track record. As Lyndon Johnson said, "Yesterday is not ours to recover, but tomorrow is ours to win or lose." In other words, don't dwell on whether you made the right decisions up to this point, know that you did, and now concentrate on figuring out the best chemo concoction possible to stomp the living he_ _ out of those bugs. (I'm not one to swear either, but sometimes the situation warrants it!) And someone else once said " The best way to predict the future is to invent it." And you are doing just that. Bravo once again to the best parents on the planet. If your mind wanders back to the question of quality of life and uncertain future, think of it this way, how could you not have done the surgeries? Imagine how you would feel not giving Mattie a fighting chance? As Emma's mom so wisely noted, the fact that Mattie has the energy to be defiant is a great sign. Mattie is so strong. He is a fighter. (Try to remember that next time he's yelling at you in the wee hours of the morning; it's a good thing :-) If anyone has the chance to beat this thing, Mattie the conquerer does. How could you not give him that chance? So what if you can't find studies that indicate a better prognosis. Studies schmuties. There is always a first...the first successful heart transplant, test tube baby, etc. People scoffed that those things would ever be possible. But modern medicine is an incredible thing, and it's something that you always have on your side. Remember Lorenzo's oil? The parents wouldn't give up even after being told there was no cure for their child. They went out and found one. Now, I'm not suggesting you get out the test tubes and start mixing (although Mark does have a degree in molecular biology and may be able to help you out:-) But you get the picture. Most parents don't have the patience, fortitude, and indefatigable energy that you do, which gives Mattie a huge advantage. Hmmmm. I wonder where Mattie gets his strength and determination? Your family is a winning team if I ever heard one. I was just talking with Dr. Lischwe (Grace and I share a pediatrician too!) the other day and she was sharing a story she recently read about the first person to receive a pace maker. Despite the fact that no one ever had success before, the man in his forties willingly submitted to trial after trial of pace makers. The first pace maker lasted eight short hours. But he was not deterred. He bellied up to the surgical bar and submitted himself to one pacemaker after another. Finally one stuck, and he ended up living well into his eighties. Sure it's difficult now, incredibly difficult, seeing Mattie so immobilized, but just remember that you've passed those enormous hurdles of four surgeries. Phew! And look how well those surgeries went. (Thanks, Super Bob; I think we need to get Dr. Henshaw a super hero cape, don't you?) It's only a little more than a week out, and as more time passes, Mattie will gain more and more strength needed to engage in the things he loves like arts and crafts, then his mood will surely improve. And as you, yourself said, "Mattie breaks the mold." So why shouldn't he break the mold in being the first to kick this nasty disease?"
On the electronic front, we want to thank Susan, Eva K., Eric & Nataliya (author/illustrator of the Flightless Goose), Coach Dave, and Karen for the e-mails and e-cards. As we sign off for the evening, we want to wish you and your families a very Happy Thanksgiving. We are very thankful to have all of you in our lives, and thank God for Team Mattie. I also want to thank Team Mattie for coordinating the development of reminder bands (wrist bands). Ann brought me a shopping bag full of them yesterday. Thank you Carrie and CSI, the bands look wonderful. Peter and I worked hard on crafting the band's message, and I feel it says it all as we approach this miraculous holiday season... "STOMP IT OUT FOR A MATTIE MIRACLE!"
November 25, 2008
In the spirit of Thanksgiving, my lifetime friend, Karen (who is a math teacher at La Guardia High School or better known as the Fame school in NYC) had her students design some turkeys for Mattie to cheer him up. Some of these turkeys are down right works of art, so fitting of the talent at the school. We have two boxes filled with turkeys, and we are enjoying looking at each one. The students used every medium possible such as paint, paper, feathers, and newspaper in a very creative manner. We are literally surrounded by 100's of turkeys and I wish I could capture all of them on camera. Thank you Karen for this colorful and lovely gift. Peter liked your "wild turkey" gift too!
November 24, 2008
Message of the day: (Thanks Don, my father-in-law): "As to attitude, the power of positive-thinking can be turned down by fatigue. The important thing is that it not be turned off."
Mattie had another wild night. At 2am, he was up screaming hysterically. He wanted to go to the bathroom, but refused to use a bed pan. We attempted to reason with him and even offered to carry him upstairs to our bathroom. He refused all options. With each option we presented him, his frustration grew. It was impossible to rationalize with him (as it is with any kid who is having a tandrum), and this only continued to further stress Peter and I out. It was a 90 minute ordeal, where we remained firm about his options. The interesting part about all of this is it is very, very hard to remain calm and to talk softly when your child is screaming and yelling at you. It is just a natural human instinct to yell back. Peter and I are getting better at staying calm during these moments, but it isn't easy especially when you are taxed out on so many levels. Needless to say, at 3:30am, I was so upset with what transpired, and I sent an e-mail to our Georgetown Case Manager asking to make sure Mattie received a commode today. There is one on backorder for Mattie through our home medical supply company, but that doesn't help us NOW. As always, Catherine, came through for us today, and Mattie got a commode.
Mattie had two visitors today. One was Dan, Mattie's in home physical therapist. Dan dealt with Mattie well, despite Mattie completely ignoring him. Mattie refused to even make eye contact with Dan. I think his interaction with Dan today was so taxing for Mattie that he slept for several hours today. Dan plans on coming back on wednesday to start working with Mattie. God help us. But more importantly God help Dan! When Mattie makes up his mind about someone it is hard to change that perspective. Later in the afternoon, we had our first visit from our in home nurse, Sandra. When Sandra called me today, I gave her a hard time. She was talking to me about changing Mattie's surgerical dressings and so forth. I practically snapped at her and told her she wasn't touching Mattie's dressings. When I met Sandra, I realized she was just what I needed today. She is down to earth, refreshing, real, able to handle the ugly side of cancer and its emotional ramifications, and she had good and practical solutions to things like constipation and bed sores. Apparently pain medications can make you extremely constipated. So Sandra suggested adding Karo syrup to Mattie's diet. The irony is, I remember my grandmother using this remedy on me as a child. We will see if it works, but Mattie was more than happy to take a "non" medicine to help himself. He couldn't get over the fact that you can find karo syrup in the grocery store, and yet it can help you feel better! In addition, Sandra had great points about Mattie's stage I ulcer he has on his tail bone. Apparently when such an ulcer forms, it means that the muscle under the skin has died off, and this small part of muscle will never be replaced. When Mattie heard this, he was motivated to move around in his chair to prevent more muscle from being affected. Sandra had great ideas today, but she also made me laugh.
Sandra understands the pressures Peter and I are under. She told me today that anyone who is going to judge me for my decisions or has the need to correct me during such a challenging time should be discounted. She says no one is walking in my shoes, and no one knows Mattie better than Peter and I. She also told me to just say 'WTF' when people say things that disturb me. I looked at her because I had no idea what WTF stood for. It translates into What The F (a four letter explicative). I am normally not a person who curses, however, when she told me this, I started laughing. I laughed because sometimes people do say things to me that really leave me flabbergasted. Mind you I am not referring to all of you reading this blog. You all walk this path with me daily and get it. But there are others who feel the need to give me their two cents. Two cents which at times can be hurtful, even if well intentioned. I think what gets me truly frustrated is when I try to explain my position and my feelings to others, and I see that my message isn't understood or misconstrued. Maybe it is the educator in me, but when I can't get my point across I feel like I have failed. As many of you know last night I was very upset and my blog reflected that. I do not take back my feelings or what I stated, yes they are raw emotions but natural and very real. Peter and I will never give up our steadfast fight for Mattie, but we are only human and as such we too get depressed, we lose hope, direction, and our attitudes fail us now and then. I think even the strongest of people are entitled to lose it now and then. But I assure you in times like these, we hold Mattie's hand, and look at his smile, and it becomes clear what we are fighting for. I told Sandra that she missed her calling in life. She is a nurse and therapist all wrapped up in one!Earlier in the day, when I was walking Dan (Mattie's PT) out to his car, I bumped into Ellen (Charlotte's mom). She left Mattie a special Saints package at our doorstep. Thanks Ellen for making a special trip to DC! We want to thank the SSSAS Saints 2008 football team for the wonderful poster of their season. The beautiful part about this, is Mattie's picture with the team is featured on this poster. Mattie was so thrilled to see himself. We want to thank the team for the DVD too of the season which celebrates the seniors. I know you can't see the detail in the poster, but Mattie's picture with the team is located right next to where it says, "S Go Saints!!"
Today, we received a lovely e-mail from Joan Holden, SSSAS' head of school. Joan wrote, "Dear Vicki and Pete, I wish there was a phrase or saying I could provide you to help you through these tough times. We are all praying for you. I do not know how you manage to always get a picture of Mattie smiling. We are all here for you. I have to believe God’s healing hand is upon Mattie." Thank you Joan and the entire SSSAS community for your constant support of Mattie and our family.
I received this e-mail from our family friend, Phyllis. Phyllis wrote, "Lastly, I know how diligent you are to find the positive or the humor in a downright crappy circumstance so I couldn't help but find a chuckle of my own. As you described how Mattie first told you that he was tired of you and he'd rather have one of the staff as his mom, I thought that that must have been like a kick in the gut and a wound to the soul even though if you strained a bit you could, through intellect, rationalize the situation. Then for him to do a one-eighty and insist upon your constant presence and undivided attention must be mundo bizarro. All I could think was, "Man, Vicki must feel like she's stumbled into one of those tawdry soap operas where she's playing the helpless ingénue with the whacked out boyfriend who's telling her he never wants to see her again one minute and then saying he can't live his life without her the next." Hmmm. Well, maybe that doesn't sound so funny as I'm typing it out but trust me, the visual in my head was quite humorous..." I think finding the humor in any situation is a wonderful coping mechanism, and we try to do this on a daily basis. If you can't laugh about some of this stuff, we would be crying all the time.
This evening, I received an e-mail from my friend Sara. Sara wrote, "I wanted to give you a little bit of good news. A few weeks ago Michael (her husband) and I approached his company--ADG Creative--to ask if they would make a contribution to the Mattie Fund, to aid in Mattie's treatment expenses. They said they would be honored to match contributions that individuals in the company made. Michael shared Mattie's story with the employees. Keeping in mind that this is a fairly small company, everyone donated. The company matched this contribution and all of it will be going to the Mattie Fund. So please know, that you all are loved and embraced. We are sending you love, positive thoughts, and our mental and physical energy to you so you can stay strong and help each other work through this."
We had a lovely dinner tonight thanks to the Bires family. Thank you also for the yogurts and tasty treats. Mattie ate the entire blueberry loaf slice! Mattie received the movie, Polar Express, from my colleague Jay today. Mattie loved it and helped settle him down this evening.
On the electronic front, we want to thank Karen, Ms. Pollak, Brian Boru, and Cousin Rosalinda for your lovely e-cards. Also we thank Goli and John for the great Mickey Mouse christmas lights you sent Mattie. He can't wait to add them to the spectacular holiday display this year. Tomorrow Peter and I are headed into Georgetown Hospital for a meeting with Mattie's doctors to discuss treatment opinions. There was a tumor board meeting at the hospital today to discuss Mattie's case, and Dr. Shad, the Chief of the oncology practice called me tonight to let me know that they received several opinions about chemo options for Mattie from around the country and even parts of the world.
November 23, 2008
Mattie had a restless night on saturday. Peter stayed with Mattie in our living room, and Peter said Mattie was up at 1, 3, 4, and 7am in pain. So you can imagine how great Peter felt today. I fortunately had another good night of sleep, but despite two nights of rest, I feel like a zombie. I am not sure we will ever feel normal again. Today was the kind of day that I would not want to see repeated.