Saturday, 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 29, 2008
November 28, 2008
Friday, November 28, 2008
Friday, November 28, 2008
I stayed with Mattie on thursday night and got to experience what Mattie's sleep pattern was like for myself. After last night, I can safely say I don't know how Peter managed this for a week and also went to work. Mattie had me up every 30 minutes. He was whimpering, calling out, at times crying, and said he was having a bad dream. Mainly he was having the same dream, there were a lot of people around him and they were trying to hurt him. Despite looking awake and disturbed by the dream, he was relatively easy to put back to sleep each time. The entire night was like this, and at one point I jumped into the hospital bed with him to rub his leg and try to calm him down. Patches, our cat, was intrigued by this, and she too jumped on the bed. I can assure you this bed isn't big enough for all three of us. Mattie finally fell asleep from 5:30am to 8am. At 8am, Mattie could see it was light outside, and announced to me that it was time to get up. When we got up, I asked Mattie if he was tired. He said that he wasn't, at which point I told him I was surprised by this since he was up most of the night. Mattie turned and looked at me, and with a straight face told me he slept through the night. He meant it too, he had no recollection at all that he was up so often last night. I am staying with him tonight as well and plan on observing what happens again. To me, Mattie is having night terrors. Night terror symptoms are: Sudden awakening from sleep, persistent fear or terror that occurs at night, screaming, sweating, confusion, rapid heart rate, inability to explain what happened, usually no recall of bad dreams or nightmares, may have a vague sense of frightening images. Many people see spiders, snakes, animals or people in the room, are unable to fully awake, difficult to comfort, with no memory of the event on awakening the next day.
Mattie had two visitors today. At 11am, Kathie (Mattie's occupational therapist) came to have a session with Mattie. Kathie is very familiar with Mattie. She worked with Mattie for two and a half years, since Mattie had some gross motor delays as a child. Kathie worked wonders with Mattie back then, and I couldn't think of a better OT to turn to now. I think having a rapport with Mattie is half the battle and she already knows what he likes and what works for him. Mattie is pretty much turned off to most visitors these days. So Kathie was prepared to get tossed out of our home. Kathie came with her bag of tricks. Mattie started out slow for about two minutes, and then I could see Kathie had him hooked. He was playing, was animated, and very involved in moving his right arm. While Kathie was working with Mattie, Sandra, our in home nurse showed up. Fortunately Kathie had Mattie occupied, so Peter and I could talk with Sandra. Sandra needed to see Mattie's tail bone ulcer. If you recall the last time Sandra did this it was a drop down drag out event, which left me feeling very guilty and Mattie very upset. Any case, Peter went to talk to Mattie and told him that he just needed to show Sandra his sore, and then he could go back and play with Kathie. This was a real motivator for Mattie. Mattie cooperated, but as soon as he showed his sore he then told Sandra she had to leave. All I can say is I am so happy we reconnected with Kathie. I have a very special in my heart for the OT work Kathie does, and if anyone can get Mattie moving again, it will be her. Even Sandra wanted to know who Kathie was, because she could see Mattie was very engaged.
Mattie and Peter spent the rest of the afternoon creating their Christmas display of lights. They have been accumulating lights for several months now. Mattie got all bundled up with a hat, scarf, cape, gloves, and a blanket in his wheelchair and was out there directing Peter as to where to place the lights. For just a brief moment today, it was like I saw a glimpse of the old Mattie. It was as if we cracked through the walls and protective shell he has so tightly built around him. Mattie used to be a very verbal child, but now I feel he has understandably regressed back into what he was like in his toddler years. The time period before he used words and could take care of his activities of daily living.
I could see putting together lights and being outside was a great activity for Mattie. It was wonderful to hear him talking and participating in what was going on around him. I tried to take a picture of their display in progress. Our neighbor, Malcolm called us tonight and thanked us for taking the time to brighten up our community with lights. Thanks Malcolm, your call meant a lot. 
This week my mom celebrated a birthday, and I took her to see Giselle, the ballet, at the Kennedy Center tonight. My parents and I went out to dinner first and then we went off to the ballet. It was wonderful to leave my caregiving responsibilities behind for several hours and see and hear something beautiful. Giselle, though a sad story, was so well done, and there was so much energy in the air at the performance. My mom and I enjoyed our time together! However, when I got home Peter told me he had a very difficult time with Mattie because Mattie was upset that I wasn't home with him this evening. Peter said Mattie was upset for an hour, but Peter helped him through it. The irony is I told Mattie I was going out and I even said goodbye to him before I left.
I would like to share three e-mails with you that I received today. I thank all of you for your e-mails, they brighten my day and I always appreciate hearing your insights. The first e-mail is from Lesley, one of my sister-in-law's close friends. Lesley wrote, "I continue to start my day reading about your deepest pain and most challenging choices. Today, I am grateful for you! You have single handily taught me how to parent better, be proactive and understand the true gift of loving a child unconditionally. My wish for your family is sleep and full recovery in every sense of the word. Your son has more tenacity that any adult I have ever encountered (other than you)."
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!
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
Happy Thanksgiving!
Thursday, November 27, 2008To all our readers, we want to extend warm and loving wishes to you and your family at Thanksgiving! We hope you had a wonderful day with friends and family enjoying laughter, conversation, and good food. We certainly have had our share of hardship this year, but despite this, we are grateful that Mattie's cancer was diagnosed, that he is in treatment, and thanks to Bob is currently cancer free. We want to especially acknowledge Ann Henshaw (our Team Mattie coordinator) and Alison McSlarrow (our Team Mattie fund and communications manager) for their constant support and tireless energy. These are remarkable and selfless women! We are especially thankful to the wonderful community of Mattie supporters that are out there. As we reflect on what we are grateful for this year, we definitely are grateful to all of you.
We want to thank the Peterson family who graciously offered to cook Thanksgiving dinner for us today. However, I told Karen Peterson that I wanted to try to cook myself. I haven't really cooked since August, and I wanted to try to normalize the day for all of us. If that is at all possible. My joke with Karen was I wondered if I remembered how to even use the appliances in my kitchen or boil water. I rose to the occasion though, I guess it is like riding a bike. You never forget your cooking skills. I want to thank my parents who bought all of our groceries, cleaned the turkey, and started cooking our potato recipe. I couldn't have done a dinner tonight without their help!
Peter tells me Mattie had an awful night of sleep on wednesday. Mattie was up on the hour waking up with terrible dreams. I remember these times from the first surgery. This is how Mattie's body deals with the pain medication and perhaps the whole horrible ordeal. I have decided to take over night duty tonight. Peter needs and deserves a major break. When Mattie woke up this morning, we turned on the TV and watched the Macy's Thanksgiving Day parade. In the past, Peter and I were normally so busy that we never watched the parade. But today, we all stayed in once place and enjoyed the floats and marching bands. I brought out many of the dishes I was preparing for the day, out to the living room, and set up prep areas there, so that Mattie could see that I was with him and could take part in the cooking process. He was VERY demanding all day, he wanted Peter and I near him at all times. It was thoroughly exhausting, and it made it very difficult to cook and be in the kitchen. We did enjoy the parade, and our favorite float was with Kermit the Frog, featuring a song, "I Believe!" Seemed very inspiring and meaningful for the season and for us personally.
I tried to make today festive and got out my favorite turkey plates to inspire Mattie to come and eat at the table. I attached a picture of our table. However, it wasn't the Thanksgiving we were
hoping for. Mattie refused to come to the table, wouldn't eat any of the food, and was in a grumpy mood. Mattie had requested certain foods today, and I made all of them. Even his favorite, sweet potato souffle with marshmellows. But nothing really interested him. He was just mad, and the only way Peter, my parents, and I could have dinner, was with Peter sitting on the couch next to Mattie. It seemed very disjointed, and what drives me absolutely crazy is that Mattie gets snappy and doesn't like hearing noise or people talking. He prefers silence! In many ways our home is becoming prison like. We are praying that as soon as Mattie gets some more independence back physically, a lot of the emotional outbursts, the anger, and anxieties will lighten up. But until that time, the question becomes how do we manage all of these changes in Mattie?Mattie's occupational therapist, Kathie, is coming over tomorrow, and our nurse Sandra is coming back. Hopefully that interaction will go better since Peter will be home, and there will be two of us to help Mattie through the visit. We end tonight with this quote. Happy Thanksgiving!
"Do not get tired of doing what is good. Don't get discouraged and give up, For we will reap a harvest of blessing at the appropriate time." ~ Galatians 6:9
November 26, 2008
Wednesday, November 26, 2008
Wednesday, 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!"
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
Tuesday, November 25, 2008
Tuesday, November 25, 2008Message of the day (Thanks Susan S.!): "By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired." Susan said, "So conversely if we don't desire Mattie to be ill, then he has to be on the road to health, right???"
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!
Before I tell you about our day, I want to let you know that the Karo syrup worked like a charm. At 4am today, Mattie went to the bathroom and felt much better. Needless to say, I am throwing out every laxative I have ever been given. They don't work well, and to me a more natural remedy which has worked for generations is a better way to go. I am taking Karo syrup with me on every hospital visit!
Ann came over today and played with Mattie while Peter and I went to Georgetown University Hospital to discuss the next steps in Mattie's treatment with his doctors. Ann kept Mattie thoroughly engaged and occupied for several hours, since our meeting was over two hours long. Mattie and Ann created a volcano, played with a remote control tank (thanks for that great gift!), and did a host of other science projects like making snow and crystals. Mattie loved his donut and we plan on enjoying the pumpkin loaf. We are blessed to have a friend like Ann. Mattie gets along beautifully with her, and her bag of tricks are always a hit. She is the modern day version of Mary Poppins.
Today's meeting was helpful and yet solemn at the same time. In attendance at the meeting was Dr. Toretsky, Dr. Synder, Denise (our social worker), Catherine (our nurse case manager), and Kathy (our nurse practitioner). Dr. Toretsky did a very thorough job of seeking out consultations from oncologists all over the country and world. Of the main hospitals in the US that were contacted and weighed in on treatment with a written report were NIH, Sloan Kettering, St. Jude's, and MD Anderson. There were others involved as well, that shared their opinions verbally. All these professionals came to a consensus about Mattie's treatment yesterday in the tumor board meeting. The next step in chemo treatment is a hard decision, and as a parent I don't want to ever look back and say that Peter and I did not seek out other medical opinions, that we did not do our homework, and wonder if there were other options out there that we should have considered. As of today, I feel these fears have been put to rest. Which is a gift! Today we learned about Mattie's pathology results for the other three tumor sites. You will recall that his right arm's percentage of necrosis was 60%. Necrosis means the pathologic death of one of more cells. The percentage of necrosis in primary osteosarcoma, after the patient receives preoperative chemotherapy, is an indicator used to select subsequent chemotherapy post surgery. Any thing less than 90% necrosis is considered a "poor" response to pre-surgery chemotherapy. So we already knew Mattie's right arm was a poor responder. But it wasn't until today did we realize just how complex a case Mattie is. Dr. Toretsky said the research community is lucky if they see one case of multifocal osteosarcoma presented a year in the entire world. In any case, in the sparse literature on multifocal, it reveals that typically the percent necrosis in one tumor, is the percent necrosis that is seen in the other tumor sites as well. So if Mattie followed what the literature says, then his other three tumor sites would also reveal a 60% necrosis level. However, you should be seeing a trend with Mattie by now. He breaks the mold. To my understanding there is no other multifocal case in the world that has presented like Mattie's! We learned that in his left arm and wrist he is considered a "good" responder, with a 95% and 100% necrosis level respectively. However, in Mattie's right leg, there was only 2% necrosis (meaning that at least 98% of the tumor was alive and viable at the time it was removed during surgery). This finding is very disturbing to both us and the doctors. Why? Not only is it a VERY low percentage number, indicating that chemo basically was totally ineffective for this area of Mattie's body, but that if you recall back in August when a biopsy was performed on the leg (five days after chemo), the biopsy revealed that all the tumor cells were dead. We took that as a VERY positive sign, that after only five days of chemo, all the tumor cells were killed in the leg. So how do we go from all dead cells in August, to a 2% level of necrosis in the leg today? Well there are a lot of theories, but one theory is the tumor regenerated and it came back stronger and resistant to the current chemo treatment Mattie was on. So you may be asking yourself, why is all of this relevant and important to know? Isn't Mattie cancer free now, weren't all the tumors removed? The answer is yes. The tumors are out, and Mattie appears to be cancer free now. But Mattie must go back on chemo, because while the tumors were still in his body, most likely pieces of tumor cells broke off and went floating around his body. In fact, if we did not do post-surgery chemo Mattie would definitely died. All the research indicates this! Which is why there is post-surgery chemo now in all osteosarcoma protocols. However, what the 2% level of necrosis tells us is that the current chemo isn't working, and if for some reason parts of this leg tumor did migrate around the body prior to surgery, then do we want to continue to use the current chemo which we know doesn't work on this tumor to eradicate the remaining pieces in the body? Common sense alone says NO WAY!
Peter and I learned that the medical community is recommending that we add two other chemo drugs to Mattie's treatment: Ifosfamide (I) and Etoposide (E). In addition, there is also the potential to add MTPPE, an experimental drug that boosts one's natural immune system, to Mattie's treatment, but this drug's first dosage can only be administered at Sloan Kettering, NY or MD Anderson, TX. After the first administration the remaining dosages can be done at Georgetown. Well this all sounds like a simple decision, doesn't it?! Just add I and E and MTPPE. Well here is the catch. I and E can have potentially nasty and long term side effects such as renal failure, damage to the heart muscle, development of leukemia, damage to brain tissue, and sterility. So I guess as a parent you have to pick your poision. What can you live with? Certainly if we don't attack the cancer aggressively, then Mattie won't make it, but if we do give him these heavy duty chemo drugs, then he may make it through the cancer, but be left with other complicated issues. So Peter and I are pondering this decision and mind you we have to make it quick, because Mattie restarts chemo on monday!
While in the meeting, Peter continued to ask the doctors about other options. It is possible, though I don't like going there, that while Mattie is on this chemo treatment, that other tumors could arise. Actually I guess I am so far in denial, I never even thought of that scenario until Peter brought it up. Now here is the killer, if tumors arise during Mattie's post-surgery chemo treatment, then the doctors feel that there is no known treatment that will cure Mattie of osteosarcoma. Ideally what we are looking for is a complete cure, but Dr. Toretsky explained that Mattie's chances are greater for survival if he can remain tumor free for a year to two years after treatment. After two hours of such a discussion, I can honesty say I felt nothing. I did not feel sad, I did not feel angry, I did not even feel depressed. I was too much in shock to feel anything!
In my heart of hearts I know we need to add I and E to Mattie's treatment to give him a chance at having a life. When we went to Sloan Kettering a few months ago, they recommended not using I and E. Instead they encouraged us to keep that on the back burner to use when Mattie's cancer reoccurs. Georgetown feels like this isn't a viable option. They feel that we shouldn't wait. Because if his cancer comes back it will most likely be more extensive and the window to treat the cancer aggressively would have passed. So with this line of reasoning, how can we not sign a consent form to give Mattie I and E? I don't know but these are the questions that plague me at 11pm when I have a minute to myself.
Mattie and I had a slow afternoon, but I continue to grow concerned regarding his tail bone ulcer, which is looking more red. I learned that our insurance company will not pay completely for in home nursing visits, nor will they cover the use of a nurse's aide. Got to love it on so many levels. Fortunately I am transferring Mattie without a problem, but I hope that Dan, the PT, can get Mattie up and moving some how this week. Mattie needs to be able to shift his body around. My parents came over today to visit Mattie, and he gave them a hard time, as he has done now since the second surgery. However, he was able to verbalize with my mom today that he wants to see my parents, but that he is just angry and he doesn't know why or how to show it. I thought that was such a perceptive comment, and hopefully we will be able to process that some more with him so that he can feel free to safely explore the anger without taking it out on us.
We want to thank the Coker family for an amazing dinner tonight from the Cheesecake Factory. Nothing like meatloaf on a cold day, not to mention all the wonderful cheese cake and chocolate cake. Also I have never seen a macaroni and cheese like the one the Cheesecake Factory made tonight. It was to die for, even Mattie took notice. Unfortunately Mattie is back to his NO eating kick. However, I am sticking in powdered protein in anything that he will eat and drink, in hopes this will help supplement his diet.
On the electronic front, we want to thank Bob Weiman (what a great Jib Jab of Mattie's grandparents square dancing!), Karen, Allen, Susan, and Brian Boru for the wonderful e-cards and e-mails. We also want to thank the Murphy family for the wonderful Thanksgiving day homemade cards!
I end tonight by telling you about a very special gift I received in the mail yesterday. A prayer shawl. It comes from Jim and Julie Bennett in Maine. Mr. and Mrs. Bennett are the parents of my friend Leslie. Leslie was my first college roommate. I wore the shawl all day today! It is a beautiful blue color, and it is so warm and inviting. It was made with a lot of love and the tender and spiritual message it came with was moving. Here is what Julie wrote about the shawl, "I'm part of a shawl knitting ministry at my church. It's a very special mission for me and I wanted you and Mattie to have a shawl. I have said many prayers into the knitting of this shawl. As a crafter I feel great joy in thinking that I may bring you some comfort. As you wrap yourself in the prayer shawl may you feel the presence of those who love you and the warmth of the one that loves you." In times like these, I cling tightly to the shawl and the meaning behind it! I am thankful for such a special gift that took so much time, energy, and effort to create.
Goodnight and thank you for the opportunity to share our day with you today. I know you are all out there reading and listening, and that is of great comfort to us. Walking this path is hard enough, but to do it alone would make it impossible.
November 24, 2008
Monday, November 24, 2008
Monday, 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."
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.
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
Sunday, November 23, 2008
Sunday, November 23, 2008Quote of the day: (Thanks Daddy!) "Courage is resistance to fear, mastery of fear, not absence of fear." ~ Mark Twain
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.
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.
Peter took a picture of Mattie last night after Patches jumped on Mattie's bed with him. It is a cute picture of both of them together and I am glad that Peter captured this moment. Mattie was open to having a playdate today, and Charlotte came over at 2pm. Charlotte brought Mattie a lovely Star Wars pop up book and some other great items, as well as a happy meal and a beautiful turkey shaped cookie. However, Mattie turned inward. He was agitated and frustrated. It was almost like he wanted to play with Charlotte but just did not know how, and got all worked up about this. He did not want Charlotte touching his toys, and he snapped at her several times. Charlotte dealt with this, but naturally, like any of us, got upset with Mattie's treatment. I can totally relate to how Charlotte felt. Naturally I also relate to how Mattie feels and it becomes overwhelming to see how his relationships with friends and family are changing and there really isn't much I can do about it. Charlotte did not stay long today, because basically we were at a stand still with Mattie, and we could not find anything he was open to doing with her. Thank you Ellen for trying to bring a smile to Mattie's face today. I know you and Charlotte tried very hard.
Mattie and I spent some time alone today, and I gave Peter the opportunity to get out for a few hours. Certainly not long enough, but the intensions were good. Mattie and I had a rough afternoon. There was nothing I could do or play with that engaged him or made him happy. We pulled out legos, but he landed up only getting mad at me because I wasn't either doing it right, or bringing him the right pieces. By the time Peter came home, I was thrilled to see him. I found today so wearing, that when Peter got home, I went upstairs to attempt to read more osteosarcoma research papers, and landed up falling asleep for 20 minutes.
I am not sure what is more depressing, the fact that there is virtually NO research available in the peer reviewed literature on multifocal osteosarcoma (Mattie's form of cancer) or when reading about cases of bone metastasis (meaning that there is a primary cancer site in one bone and then the cancer spreads to other bones, which could be a plausible mechanism to explain how Mattie developed multifocal cancer) the survival rate is grim. I mean really grim. In fact, in most studies most if not all metastatic bone cancer patients did not survive. When I read the statistics about survival, it is hard not to take this to heart, especially since what we are currently going through is torture beyond belief. We could put up with the torture, if the outcome would be positive. I realize nothing in life is guarenteed, but the stakes here are high. We have disabled Mattie physically on three limbs, his attitude and character have changed, and we have many more months of chemo ahead. You have to ask, what for? Why do this to him and us, if the chances of survival are non-existent. As my friend Karen always says, there has to be one kid who beats the odds, and who is to say it won't be Mattie. I cling to this line of reasoning. But on tough days like today, it is hard to find and reflect on the positive.
The afternoon was hard, but this evening was over the top. Mattie fell asleep from 6:30pm until 7pm. Peter and I had a minute to have dinner without jumping up like jack rabbits. We want to thank the Tilch family for a wonderful pasta feast. You really spoiled us and it is our hope to meet you in person one day at SSSAS. While we were eating, I landed up crying. I do this in calm moments, but this was the calm before the storm. At 7pm, Mattie woke up hysterical. He was in terrible pain, and we worked for 45 minutes straight to figure out what was bothering him. But there was no relating to him. We couldn't comfort him or reason with him at all. It was very hard for Peter and I to keep our cool, because Mattie was screaming and crying and did not stop for a second. Peter and I could feel our blood pressure rising and also we were powerless over what was happening. We could not give Mattie Roxicet (his pain medicine) either, because he had taken his dosage not that long before. I am not sure how we managed to get through this tirade, and I am still worn out from it as I write this. Mattie wiped himself out from this and is sleeping now, and Peter is resting with his eyes closed on the couch. What a life!
Even JJ (our resident Jack Russell Terrier) and JP came to visit today, but Mattie chose to ignore them instead. Mattie's attitude from my perspective is so natural. He is experiencing things that even an adult would have trouble grabbling with and understanding. Nothing about this is fair, and when I see other children Mattie's age, I get very upset on some level, because Mattie should be allowed to be a child too. None the less, as Mattie's personality changes, our level of isolation becomes more pronounced. If this keeps up, this should prove to be a VERY long week ahead.
I received a lovely e-mail from my former student, and now friend, Mary. Mary wrote, "You mentioned how nice it is to have this time with Mattie, even under these seriously challenging circumstances, without the interruption of all the demands of life's distractions...I agree with you, it is a blessing and a gift in the midst of all the agony you've gone through. Since my sons have become adults, I look back on the times we were really connected and close, the times we played together and just spent quality time together. I miss those times now, but I am grateful we had them. It's what I think of now that they are grown up and not living at home anymore. As difficult as this has been for you and Peter, and difficult is an understatement, this special time with Mattie will stay with you forever. One more thing, when you were describing moving Mattie to his chair...I wanted to write and say Mattie wouldn't have been the only one needing anti-anxiety medication to accomplish that task, I would have been asking for some pills too."
When I read Mary's last line, I laughed, but in many ways I can understand why parents and cancer patients need psychtropic medication. Cancer enables you to see the depths of despair that I wouldn't wish upon any family.
I liked the quote my dad found for the blog today. Because it indeed takes great courage to make it from moment to moment on this cancer rollercoaster. We experience and tackle fears everyday, Mattie's and our own. Of course the greatest fear, is our existential anxiety. Our anxiety and fear about how to manage pain, how long will Mattie have to deal with these feelings, and of course the overarching question which we don't really like to talk about.... how long will we have Mattie in our lives?
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