Saturday, April 11, 2009
Quote of the day: "Do not let what you cannot do, interfere with what you can do." ~ John Wooden
On Friday night, Mattie fell asleep at 10:30pm. He was up periodically throughout the night going to the bathroom, and also because he was upset a couple of times. So I got up to comfort him and to help him fall back to sleep. This morning he slept in, but when he woke up, I noticed he and his bed were all wet. I assumed he had an accident. Mattie assured me that wasn't the case. He then noticed that it was his central line cap that was leaking IV fluid. He diagnosed his own problem. So I helped him up and changed him and then we called in Laura, his HEM/ONC nurse. Though Laura is new to the HEM/ONC team she is an excellent nurse. In fact she is the nurse who helped me on the floor the day Mattie was having a negative reaction to MTP-PE. Laura had the where with all to preorder Demerol which helps to counteract the negative reaction to MTP-PE. In the past, Demerol was never prefilled, but Laura wanted to play it safe that day. Since that incident, preordering Demerol for Mattie is NOW standard practice.
Laura came in and changed Mattie's central line cap, and she was very sensitive to Mattie's agitated state. She worked very well with Mattie, and she had her hands full today because she had to spend a lot of time in our room performing Mattie's second platelet transfusion. Mattie had his first platelet transfusion on Friday morning, but his platelet level was even lower today than it was on Friday prior to the first platelet transfusion. I spoke with Dr. Abu-Ghosh today about why Mattie's platelet count continues to drop. She provided me with one of two explanations. Sometimes the bag of platelets from the blood bank does not have a concentrated level of platelets, or enough to bring Mattie's counts back up, and therefore a second bag of platelets is needed to stabilze the level. The second explanation was that Mattie's neutropenic fever can chew up the platelets that are coming into his body through a transfusion. So Dr. Abu-Ghosh is monitoring Mattie closely. She ordered blood to be drawn from Mattie right after the transfusion to see what his platelet count was, and then he will have a second blood draw 12 hours later to see if he is maintaining the platelet level.
While Mattie received platelets, he basically had to be connected to a blood pressure cuff, which took his blood pressure every 15 minutes. Which is why Laura was bouncing in and out of the room this morning. Laura was also training a new HEM/ONC nurse, and Mattie put both of them through their paces. Mattie and I did various things together, such as playing hidden pictures on the computer, reading, and even watching the new Scooby Doo movie again that Virginia brought him on Friday. However, Mattie just couldn't get comfortable. He was edgy and was unhappy the playroom wasn't open. Mattie's good buddy, Zachary, was going to come to the hospital today to spend part of the day with him, but I quickly assessed this morning that this wouldn't be a good idea. First of which Mattie's white blood cell counts are zero and he has no immune system at the moment, and second Mattie just seems weak and unhappy. Both of these facts made a convincing case not to have a play date.
We had a lovely visit this morning from Miki, one of our favorite HEM/ONC nurses. Miki has helped me through many difficult moments in the PICU. Miki was one of the nurses who celebrated Mattie's birthday with him. In fact Miki was taking pictures throughout the party. Today Miki brought in a photo album she created for Mattie of the party. It was such a special and thoughtful gift, on top of the gifts she already gave Mattie on his birthday. Mattie literally said, "thanks Mik for the great album." It was very sweet, and I think Mattie really enjoyed reliving aspects of his great party! The gift of photos meant a lot to me, because it captured a happy time, in a sea of many unhappy days. But again this speaks to the caliber of our HEM/ONC nurses. They go above and beyond their job descriptions every day.
At around 2pm, I called Peter at home and I told him Mattie really wanted to see him. I think my level of "fun" had ended, and he needed new blood. Mattie was looking forward to building a lego with Peter. When Peter arrived, Mattie showed Peter the photo album and then jumped right into building. At which point Peter sent me home.
When I got home, I went right to bed to take a nap. I slept for at least three hours, and woke up in a daze. Fatigue is impacting my out look on Mattie's situation. My dear friend Karen, who I grew up with and have known since 6th grade, e-mails me back and forth multiple times during any given day. Though she lives in New York City, she supports me in so many ways. Today she e-mailed me and reminded me about a place my mom and grandmother used to take me to in the summers, Sorrento, Italy. We had a lot of family in Italy and I was lucky enough to spend my childhood summers there since my mom was a teacher and had the summers off. My e-mail with Karen today gave me great pause. Because I reflected on how my childhood was so different from Mattie's.
Normally when I am home I can relax, but today my mind went into overdrive. I felt a great deal of sadness about Mattie, how he may never see places like Sorrento, and worst of which he may not have a future. Certainly no one's life is guaranteed, but living with osteosarcoma, seems to really stack the odds against you. What an absolutely horrible disease, and there are days I wish I would wake up and find out I was sleeping through a nine month nightmare. No such luck!
Peter and I have checked in periodically by phone and he told me that at 4:30pm, Mattie took a nap. Naps for Mattie are UNHEARD of. He only naps when he is sick and weak. I have no idea what tonight will hold for Mattie or Peter, and though my body is home, my heart and mind are with both of them.
I would like to end this posting with two e-mails I received today. The first if from my mom. My mom wrote, "The trials and tribulations that Mattie has endured were epitomized by all the suffering he went through on Good Friday. It was very symbolic of what Good Friday signifies for humanity. It deeply affected me for it was a translation of events that happened 2000 years ago to a modern day setting in a hospital in Georgetown. But as a good Christian, I remember that Jesus' suffering was followed by the Resurrection and it brought me hope that Mattie, because Jesus will NEVER abandon him, will after all the suffering and pain have a RESTORATION of good health with the help of GOD. I continue to marvel at the loyalty and commitment of your friends throughout this long journey. Never once have you been left to your own devices. There has always been a faithful friend to give you comfort in one form or another."
The second e-mail is from my friend Charlie. Charlie wrote, "Another rough day weathered. As you said, it is the holy season for both Passover, also known as the festival of freedom and Easter, the holiday of rebirth. Passover means more than just the freedom of those in physical slavery but also freedom from other kinds of slavery as well: poverty, ignorance, indifference to the suffering of others, etc. I would add to that freedom from illness so that life may be lived and enjoyed. I hope that this season of spring, rebirth and renewal brings strength to you and to Mattie so that you can face the challenges still ahead and come out well on the other side. Many thanks to those who gave of their time on Good Friday to help smooth out a difficult day for Mattie and to those who will give up their holiday weekend to do that on Saturday and Sunday. Here is the video for Stand by Rascal Flatts about finding the strength to overcome adversity."
I love the empowering words reflected in the video: Determination, Passion, Courage, and Grace!
http://www.youtube.com/watch?v=vm8711y6ILU&feature=related
April 11, 2009
April 10, 2009
Good Friday
Friday, April 10, 2008
Once, the experiments were done, Mattie had a physical therapy session. Anna had her work cut out for her because Mattie wasn't feeling well and was VERY moody. Mattie is even more tentative about standing now that the cast is on his leg, so the idea of getting him to walk doesn't seem like that is going to happen any time soon. Anna tried her best, and Peter, myself, and Linda were there to support him, but he shut down completely. When Mattie shuts down, that is it, there is not coaxing him to do anything. Anna has a good attitude about all of this, and helps keep up our hope and motivation during these difficult times. But the cast on Mattie's leg was a definite set back for him, and I can only imagine what the next round of surgeries will mean. Each procedure performed on Mattie seems to have an accumulative effect. Meaning, each time he loses control over the use of a body part or experiences pain, there seems to be a learned response or at least a memory of former pain or lack of control. These memories are then brought into the next situation, which is why I believe the next surgery will be complicated, because it won't only be the current surgery Mattie has to deal with, but there will be a compounded level of anxiety from past experiences this year.
After we had dinner, I sent Peter home to get some sleep. Since we are trying to switch off while Mattie isn't receiving chemo. Mattie put me through my paces tonight. He did not know what he wanted to do, but he clearly wanted to do something. I went through a whole list with him, but all I kept hearing was "NO I don't want to do that." Finally we made up our own game with his cars, planes, and this huge rubber frog that Tanja gave us. The frog was attacking the cars, and they somehow had to defend themselves. We were very creative in our means of protection. While we were playing Mattie started to feel stomach and mouth pain from his mucositis. So I called in Amanda, his night nurse. Amanda is lovely, but she is a traveling nurse and is not familiar with Mattie and how he likes things done. Instead of Amanda pushing his morphine directly into his central line (which goes into his system faster), she connected the morphine syringe to his IV pump and had it infuse in that way (it enters his system slower). In any case, Mattie was truly upset that she did not administer it the usual way, and because she deviated from the norm, he assumed he wasn't going to feel relief from the pain. His assumption was if the medicine is administered differently it won't work the same way. He worked himself up into an hysterical state. So much so that he was crying and his nose started dripping. But it was dripping blood. Dripping is putting it mildy, it looked like it was gushing. I went through half a tissue box. I called in Amanda, who spoke to the doctor about this, but they were okay with what happened because the bleeding stopped and he did receive platelets earlier in the day. It was just frightening. Frightening because I was trying to contend with blood coming from both nostrils, and also trying to rationalize with him that he would feel the affects of the morphine soon, but needed to be patient. A hard thing to do when you are in that much pain. Needless to say, I sat next to him, rubbed his head, and let him try to relax. Fortunately he fell asleep once the morphine kicked in. Mattie continues to run a fever tonight, so we are monitoring that as well. What you also need to keep in mind is my emotions are also frayed. I am tired, living an emotional roller coaster, and facing the worst life has to offer which is having a child with a life threatening illness. So when Mattie has these difficult moments in order to help him it comes at a large price to me, because I keep tapping deeper and deeper into reserves I did not even know existed.
I would like to end tonight's posting with two e-mails I received. The first one is from my friend Charlie. Charlie wrote, "I would say that if this week were a roller coaster, I would have been yelling to be let off several days ago. More highs and lows and twists and turns than anyone should have to deal with. Emotional swings from one end of the spectrum to the other. It sounds like Mattie's knee is progressing well; this is one of the advantages of being young and flexible even though it is harder for children to understand the necessity of these things. I am grateful to all the people who helped with Mattie yesterday and for the compassion of the Dr Abu-Ghosh who really understands the need to alleviate the pain and suffering of a patient so that the person can use their strength to heal rather than to fight off the pain. Many physicians seem to lack this understanding. Dr. Synder too, understands what is required and should be commended for showing courtesy and respect to your position as an educated parent and consumer of medical care. Many thanks as well to all the volunteers and helpers who made yesterday bearable as you and Mattie had much to deal with. I hope you had the chance to rest even though I know you are so sleep deprived that even a full eight hours will be only a drop in the bucket."
Quote of the day: "The world is full of suffering, it is also full of overcoming it." ~ Helen Keller
Before I begin tonight's blog posting, we want to acknowledge the spiritual and meaningful season that we are in. We want to wish our Jewish readers a very happy and peaceful Passover. We also want to acknowledge for our Christian readers that today is a solemn day in which we recognize the huge sacrifice God made of his only son, so that we may have eternal salvation. With everything happening in our life with Mattie, it becomes challenging to know what time of day it is, much less what month of the year. However, we would be remiss without acknowledging these sacred holidays for ourselves and our readers.
Peter told me that Mattie had a relatively peaceful night, however, Mattie did not fall asleep until around midnight. However, Mattie was up early, and when he woke up he was in a terrible mood. I had the opportunity to sleep through the night at home, but I wanted to get back to the hospital around 1pm today, in time for Mattie's physical therapy session with Anna.
Mattie is still very weak today, and his absolute neutrophil count is ZERO. Meaning that Mattie is very susceptible to picking up any virus or infection around him. He literally has no natural defenses. In addition, Mattie had a non-stop bloody nose this morning. It was alarming to Mattie, but Peter explained to Mattie that this was happening because his platelet count was low. Mattie had a platelet transfusion this morning. So as a recap, on Wednesday Mattie had a red blood cell transfusion, and today he received platelets.
Peter had his hands full with Mattie this morning, and at one point, Peter tells me that Meg (one of Linda's interns), Robbie (a friend of Brandon's and a volunteer), and even Linda were in the room with Mattie trying to pull him out of his funk. It wasn't easy and their magic did not last long, because by the time I arrived at 1pm, Mattie was angry with me and wanted me to go home. That was a first for me! Of course when I said that I would turn around and go home, that was met with opposition. So clearly I stayed! Peter took pictures of Mattie surrounded by the "cheer up" committee today.
Left: going clockwise - Robbie, Linda, Meg, and Mattie
Right: going clockwise - Robbie, Linda, Meg, and Mattie
Before I arrived at the hospital, Mattie sent Linda out on a wild goose chase for foods he wanted to eat. Fortunately Linda had to go to the grocery store to purchase a cake for another patient, but when she came back she brought Mattie waffles, pancakes, his favorite iced cookies, and cupcakes. He was in heaven and ate an entire waffle. That was the extent of his eating real food today! Thank you Linda for going out of your way yet again!
Chris, the president of the Georgetown Chemistry Club, came by today to perform some experiments. Today's experiments involved learning about the properties of polymers. Mattie got the chance to make a non-Newtonian fluid, which literally when you felt it was soft like liquid, however, if you poked at the solution, it felt hard to the touch. This substance was made out of cornstarch and water! So simple, and yet so neat. The second experiment was the formation of gak, one of Mattie's favorites, which involves combining elmer's glue and borax (and in this case green food coloring).
Left: Anna, Chris, Linda, Mattie, and Vicki all playing around with this amazing liquid/solid substance!
Right: Chris and Mattie working on green Gak!
Once, the experiments were done, Mattie had a physical therapy session. Anna had her work cut out for her because Mattie wasn't feeling well and was VERY moody. Mattie is even more tentative about standing now that the cast is on his leg, so the idea of getting him to walk doesn't seem like that is going to happen any time soon. Anna tried her best, and Peter, myself, and Linda were there to support him, but he shut down completely. When Mattie shuts down, that is it, there is not coaxing him to do anything. Anna has a good attitude about all of this, and helps keep up our hope and motivation during these difficult times. But the cast on Mattie's leg was a definite set back for him, and I can only imagine what the next round of surgeries will mean. Each procedure performed on Mattie seems to have an accumulative effect. Meaning, each time he loses control over the use of a body part or experiences pain, there seems to be a learned response or at least a memory of former pain or lack of control. These memories are then brought into the next situation, which is why I believe the next surgery will be complicated, because it won't only be the current surgery Mattie has to deal with, but there will be a compounded level of anxiety from past experiences this year.This afternoon, we had a visit from Virginia and her son, Jon Morgan. How do I know Virginia? Virginia got to know us through Mattie's blog. A friend of mine posted Mattie's blog address on her community listserv, and this is how Virginia found us. Virginia is a loyal blogger, and has really gone out of her way to support us. Today Virginia and her son came bearing lots of Easter gifts for Mattie, such as an adorable Lightning McQueen Easter basket filled with goodies and a new Scooby Doo movie (which Mattie watched tonight and loved it!), two great gifts from Childsplay such as Magic Science (Mattie loves slimy inventions!), dunkin donuts, and my favorite things: fresh fruit and chocolate ice cream! In addition, Virginia and Jon Morgan brought about a dozen plastic Easter eggs filled with things, which we can hide for Mattie on Sunday. Thank you for your time, energy, and thoughtfulness! You have helped make a hard Easter a little brighter.
We want to especially thank the Bentsen family for providing us with a wonderful lunch and homecooked dinner today. Tamra, I appreciated the tea and soup at lunch, not to mention the brownies. Tamra out did herself tonight, because she made us homemade carrot soup and roasted chicken with string beans! The food was delicious, but Tamra always spoils me with an amazing presentation. Tonight's surprise was she brought us real plates and bowls to use at the hospital and will pick them up on Easter, when her girls come to host an Easter egg hunt for Mattie! It felt as if we went to Tamra's house for dinner tonight, since she shared a part of her home with us! Thank you for supporting us today so graciously! Mattie appreciated the beautiful cupcakes too! Mattie sent Tamra on a wild goose chase today for cupcakes, but she did not disappoint! The cupcakes where in the shape of a beautiful Easter flower!
After we had dinner, I sent Peter home to get some sleep. Since we are trying to switch off while Mattie isn't receiving chemo. Mattie put me through my paces tonight. He did not know what he wanted to do, but he clearly wanted to do something. I went through a whole list with him, but all I kept hearing was "NO I don't want to do that." Finally we made up our own game with his cars, planes, and this huge rubber frog that Tanja gave us. The frog was attacking the cars, and they somehow had to defend themselves. We were very creative in our means of protection. While we were playing Mattie started to feel stomach and mouth pain from his mucositis. So I called in Amanda, his night nurse. Amanda is lovely, but she is a traveling nurse and is not familiar with Mattie and how he likes things done. Instead of Amanda pushing his morphine directly into his central line (which goes into his system faster), she connected the morphine syringe to his IV pump and had it infuse in that way (it enters his system slower). In any case, Mattie was truly upset that she did not administer it the usual way, and because she deviated from the norm, he assumed he wasn't going to feel relief from the pain. His assumption was if the medicine is administered differently it won't work the same way. He worked himself up into an hysterical state. So much so that he was crying and his nose started dripping. But it was dripping blood. Dripping is putting it mildy, it looked like it was gushing. I went through half a tissue box. I called in Amanda, who spoke to the doctor about this, but they were okay with what happened because the bleeding stopped and he did receive platelets earlier in the day. It was just frightening. Frightening because I was trying to contend with blood coming from both nostrils, and also trying to rationalize with him that he would feel the affects of the morphine soon, but needed to be patient. A hard thing to do when you are in that much pain. Needless to say, I sat next to him, rubbed his head, and let him try to relax. Fortunately he fell asleep once the morphine kicked in. Mattie continues to run a fever tonight, so we are monitoring that as well. What you also need to keep in mind is my emotions are also frayed. I am tired, living an emotional roller coaster, and facing the worst life has to offer which is having a child with a life threatening illness. So when Mattie has these difficult moments in order to help him it comes at a large price to me, because I keep tapping deeper and deeper into reserves I did not even know existed.
I would like to end tonight's posting with two e-mails I received. The first one is from my friend Charlie. Charlie wrote, "I would say that if this week were a roller coaster, I would have been yelling to be let off several days ago. More highs and lows and twists and turns than anyone should have to deal with. Emotional swings from one end of the spectrum to the other. It sounds like Mattie's knee is progressing well; this is one of the advantages of being young and flexible even though it is harder for children to understand the necessity of these things. I am grateful to all the people who helped with Mattie yesterday and for the compassion of the Dr Abu-Ghosh who really understands the need to alleviate the pain and suffering of a patient so that the person can use their strength to heal rather than to fight off the pain. Many physicians seem to lack this understanding. Dr. Synder too, understands what is required and should be commended for showing courtesy and respect to your position as an educated parent and consumer of medical care. Many thanks as well to all the volunteers and helpers who made yesterday bearable as you and Mattie had much to deal with. I hope you had the chance to rest even though I know you are so sleep deprived that even a full eight hours will be only a drop in the bucket."
The second e-mail is from my friend Jen, who lives in Boston. Jen and I went to graduate school together at Boston College where we majored in biology. It is hard to believe that Jen and I have known each other for 18 years during which time we have seen each other through many ups and downs. Jen wrote, "I hope Easter brings new hope and a resurrection of your body and spirit....Have you heard the newest Miley Cyrus song called "the Climb." It makes me think of the intense climb all of you are facing these days...in fact it sounds like the Mt. Everest of human suffering some days. I'm glad you have wonderful friends helping your journey upward."
http://www.youtube.com/watch?v=NG2zyeVRcbs
http://www.youtube.com/watch?v=NG2zyeVRcbs
April 9, 2009
Thursday, April 9, 2009
Thursday, April 9, 2009
Quote of the day: "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." ~ Anonymous
On Wednesday night, Peter went home and I stayed in the hospital with Mattie. Tonight, Peter sent me home, and we will try to periodically rotate so we both don't lose it at the same time. Mattie had a peaceful night of sleep thanks to my new best friend, Morphine! Dr. Abu-Ghosh, Brandon's doctor, has been extremely helpful. She diagnosed mucositis in Mattie several weeks ago, and prescribed him Morphine then (as a note, mucositis heals itself, once the white blood cell counts begin to rise and return to normal). This bout of mucositis is worse, and Dr. Abu-Ghosh is very compassionate and doesn't like to see her patients suffering. So she has helped me find the right balance of Morphine for Mattie. Mattie was getting Morphine every four hours, but today we upped it to every two hours. It is only within the last several months have I gotten the opportunity to really work with Dr. Abu-Ghosh, but I continue to be impressed with her calm, sensitive, compassionate, and competent demeanor. When she came to examine Mattie this morning, she could see he was in pain, and in an instant she changed the Morphine orders and got Mattie's nurse to bring in Morphine before she even examined him. In fact, she waited in the room, while Katie (Mattie's wonderful HEM/ONC nurse) pushed this medicine through Mattie's central line. That alone said a lot to me, since usually doctors are always rushing from one thing to another, but not Dr. Abu-Ghosh. Her level of sensitivity today caught my attention, and she also took it upon herself to find Linda, so that I could get out of the room and have a break.
I end tonight with a song that Charlie sent me. The song is entitled, Mountains, by Lonestar. There is a line in the song that says, "God gave us mountains so we could learn how to climb." Well bring on Mt. Everest, because I think this year I am getting a personal lesson in mountain climbing and human endurance!
http://www.youtube.com/watch?v=ZEQYN1DC220
Quote of the day: "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." ~ Anonymous
On Wednesday night, Peter went home and I stayed in the hospital with Mattie. Tonight, Peter sent me home, and we will try to periodically rotate so we both don't lose it at the same time. Mattie had a peaceful night of sleep thanks to my new best friend, Morphine! Dr. Abu-Ghosh, Brandon's doctor, has been extremely helpful. She diagnosed mucositis in Mattie several weeks ago, and prescribed him Morphine then (as a note, mucositis heals itself, once the white blood cell counts begin to rise and return to normal). This bout of mucositis is worse, and Dr. Abu-Ghosh is very compassionate and doesn't like to see her patients suffering. So she has helped me find the right balance of Morphine for Mattie. Mattie was getting Morphine every four hours, but today we upped it to every two hours. It is only within the last several months have I gotten the opportunity to really work with Dr. Abu-Ghosh, but I continue to be impressed with her calm, sensitive, compassionate, and competent demeanor. When she came to examine Mattie this morning, she could see he was in pain, and in an instant she changed the Morphine orders and got Mattie's nurse to bring in Morphine before she even examined him. In fact, she waited in the room, while Katie (Mattie's wonderful HEM/ONC nurse) pushed this medicine through Mattie's central line. That alone said a lot to me, since usually doctors are always rushing from one thing to another, but not Dr. Abu-Ghosh. Her level of sensitivity today caught my attention, and she also took it upon herself to find Linda, so that I could get out of the room and have a break.
During the morning, Mattie's doctor, Dr. Synder, also came up to visit me. I had asked Dr. Synder about mistletoe extract and its use with cancer patients who disease has spread to the lung. I had learned about this extract from a fellow osteo mom I have befriended. Clearly Dr. Synder could have researched the information and gave me her synopsis and opinion, but that is not what she did. She did something much better. She printed out research information she found for me through the National Cancer Institute. She suggested that I read it, and then after I came to my own conclusion she would tell me her opinion. How refreshing! A medical doctor taking into account a parent's perspective. Today was a day of wows for me. So while Mattie was sleeping this morning, I read the articles, and then wrote to Dr. Synder. We both came to the same conclusion about the extract, but it was nice to have the opportunity to read and make an educated decision myself, of course guided by the expertise of Mattie's doctor.
Mattie was not himself today. He continued to have a fever throughout the morning, and was in pain. So much so, that he couldn't talk. His mouth was swollen with sores, saliva was dripping from him mouth because he couldn't swallow, and his overall state was that he was upset, uncomfortable, and just wanted to "snuggle" and be held. I spent a great deal of time doing that this morning, and in fact, unless Mattie is truly sick (like he was today), he doesn't stand still long enough to snuggle. In addition, Mattie's room makes resting possible. We have never stayed in room 16 before, but it is double the size of the other rooms, and has a private shower. In addition, it has an anteroom that you have to walk through to get into Mattie's room. So literally there are two doors protecting us from the noise of the hallway and PICU. It is beautiful not to hear ANYTHING! I think this helped Mattie rest today.
At around 1pm, Tanja came to visit and brought Mattie all sorts of fun gifts and a set of bunny ears for Easter. She brought me a wonderful lunch as well. However, to my amazement, Mattie did not give Tanja a warm reception. Mind you he has played with Tanja before, and she even helped us on Tuesday when Mattie had his cast placed on his leg. But that was just it, Mattie associated Tanja with his experience on Tuesday, and he just couldn't deal with it. So Tanja and I went into the parent lounge and had lunch, while Linda did her magic with Mattie. Linda gave Mattie some Wall-E things, and Mattie was recreating Wall-E's house from the movie. Denise, Mattie's social worker, also joined in. Denise also asked for Mattie's signature, since Mattie has made the Georgetown Hospital newspaper. The article is about the ribbon cutting ceremony of the childlife room. Some of you may recall that Mattie cut that ribbon, and his picture is featured in the newspaper!
Tanja and I had a lovely lunch together and it is wonderful to have the opportunity to get to know each other better. It is in the midst of great sadness this year, that I also have developed friendships with some very special women. In many ways, I believe Mattie's illness enabled relationships to blossom and develop which may not have occurred otherwise. Not because of a lack of interest, but because of the sheer quick paced and hectic lives we all lead. Mattie's illness makes us all pause! I appreciated the hot tea and soup today, because I was physically cold in Mattie's room. I lowered the heat because of Mattie's 102 fever, and though I like heat, I knew this wasn't going to be in Mattie's best interest.
After lunch, I went back to Mattie's room and he told me that the cast was bothering his pinkie toe. So I called Dr. Bob. Bob was already headed over to Georgetown Hospital to visit patients, so the timing couldn't have been better. While we were waiting for Bob, a volunteer came in to play with Mattie, one that he typically loves playing with, but not today. Mattie was very upset that Linda left his room, and basically was asking for her the rest of the day. I have tried to explain to Mattie that Linda has other patients and things to address, but it is hard for him to grasp that concept sometimes. I am happy he has a close connection to Linda, and Linda has and continues to do so much for us. Truly if we did not have Linda, I would have lost my mind a long time ago! Instead of playing with the volunteer, Mattie decided he wanted to rest, so we said good-bye to Laurie, and I helped Mattie get comfortable. When Bob arrived, he told me he was going to do the "wedge" procedure to Mattie's cast. Bob originially was going to perform this procedure next Tuesday. But I believe Bob feels Mattie's leg is making such great progress, that he felt it wasn't necessary to wait until next week. Before we proceeded which involved Bob sawing (that sounds worse than what it was) through part of Mattie's cast, Bob talked with Dr. Abu-Ghosh about giving Mattie Versed (an anti-anxiety medication).
Mattie seemed fascinated by the cast saw, until of course it started putting pressure on his knee. Bob literally made a cut in the cast that looked like the size and shape of an orange slice by the front of the knee. Bob also made a cut in the cast on the back of the knee. When he pulled out the orange slice portion of the cast, he then broke off an edge of the slice, and used this edge as a wedge in the back of the knee to further assist in straightening out Mattie's knee. I am not doing this process justice, but by the time Bob was finished Mattie's leg looked pretty straight. Mind you, this was somewhat painful, and Mattie was screaming and crying. But certainly nothing like Tuesday's ordeal. Bob then wrapped up the knee portion and put an additional plaster cast in the knee area. Mattie's biggest complaint tonight is that many of the signatures on the cast have been disturbed. What a wonderful problem to have! The nurses were all over it, and already began to resign the cast! Before Bob began this procedure, I had the opportunity to talk with him about my disappointment over Mattie needing more surgery in June. Mind you I am having this conversation with a surgeon, and surgery is his gift and livelihood. However, while I was talking I felt as if Bob understood what I was saying from his "dad" perspective rather than his surgeon lens. I told Bob how difficult it was to see Mattie cut up, and the fact of the matter is more is in store for him. Bob did mention that Mattie's surgeries in the fall were over the top. Meaning that I think the aggressive type of surgery Bob was willing to perform for Mattie doesn't happen everyday or maybe never. In essence Mattie is the miracle child, and the fact that he has survived three massive limb salvaging surgeries speaks to Mattie's will to live and his intense spirit! Of course Bob's expertise doesn't hurt either.
After Dr. Bob left, Mattie was in a funk. Laura and Meg (Linda's interns) worked very hard to help pull him out of it. He couldn't decide what he wanted to do, and he landed up crying intensely because I apparently moved his Wall-E house that he created with Linda. I have heard my share of crying in the past two days, enough for a life time. But Meg and Laura convinced Mattie to get into his wheelchair and head to the childlife room to pick out a toy. That perked him up! Mattie returned with two wonderful items, a big digger for his sandbox and a wood model kit!
At which point, Peter arrived from work and so did dinner. We want to thank the Nashman family for a wonderfully generous dinner which also included balloons! Mattie is having trouble swallowing, but he worked on some of the Italian bread that came with dinner! Thank you Honey for your support!
I headed home at 7pm, to find that our balcony door was partly open, and stuck. This coincides with the construction they are doing on my balcony. So I had to resolve that problem, and then I had to hop onto a 90 minute professional conference call. Lord only knows where I find the strength to even put two words together when I am so sleep deprived. But I managed.
Before I sign off tonight, I would like to share two e-mails with you, as well as a song that Charlie sent me today. The first e-mail is from my friend Charlie. Charlie wrote, "What a day Wednesday was. It had a rough start with a very fitful night, followed by a fun day for Mattie and clearly ended on a low note with a return to the hospital. I am glad you got out and enjoyed some company during the day since normally a readmission means that you are very limited in your ability to go anywhere. Mattie is clearly having a difficult time with the cast and the change in his physical "presence;" I think he will adjust to the cast but it will take a bit of time for him to do so. Maybe some physical therapy, if he is willing to try, will help him learn to move and manage with the current limitation. Vicki, I truly don't know how you are managing this situation; I realize there is no choice but even so, I have to say your strength amazes me and everyone else who knows what you are going through."
I end tonight with a song that Charlie sent me. The song is entitled, Mountains, by Lonestar. There is a line in the song that says, "God gave us mountains so we could learn how to climb." Well bring on Mt. Everest, because I think this year I am getting a personal lesson in mountain climbing and human endurance!
http://www.youtube.com/watch?v=ZEQYN1DC220
April 8, 2009
Wednesday, April 8, 2009
Wednesday, April 8, 2009
Quote of the day: "Courage is being scared to death... and saddling up anyway." ~John Wayne
We can relate to John Wayne's quote. There is a lot about Mattie's disease that scares Peter and I to death, but we have no other alternative than to attack the issues head on for Mattie's sake.
Mattie had a very rough night of sleep. He was tossing and turning throughout the night and was very upset. I had to lie next to him many times last night, which was a feat unto itself, since Mattie was rotating in bed to get comfortable. I never found him in the same position twice. At one point, he had his head against the wall, and his legs hanging over the side of the bed, and yet he was sleeping! He woke up this morning and was tired and agitated, but he was excited he was having company over. Margaret, his first preschool teacher from Resurrection Children's Center, came over to spend the day with Mattie, so that I could go out. A lovely gift! In addition, Margaret also had Mattie's RCC friend, Alex, come over as well, so the boys could have a play date while I was away. Both Margaret and Julie (Alex's mom and our friend) fulfilled Mattie's request for Golden Oreos. Thank you! They have come in handy tonight at the hospital! I also appreciate you bringing over all sorts of foods for Mattie, to inspire him to eat. I am so happy that Mattie had a good time playing with Alex. It sounds like they were very busy, and they even made an elaborate blanket fort in Mattie's bedroom. Check it out!
Left: Mattie and Alex with the blanket fort!
Right: Mattie defending the fort!
While Mattie was with Margaret, Alex, and Julie today, I went out with Ann and Tanja. It was nice of them to include me on their afternoon out, and it went too quickly. But good times always do. Before I went home today, I also had the opportunity to spend about an hour with Ann's parents at their assisted living facility. Ann's mom and I worked on removing the contents out of her winter purse and moving them into a spring purse. Sounds trivial, but when you are trapped in a facility where you can't tell what time of day it is, much less what season it is, doing such a simple task becomes very important, and I was glad I could be there to help. It was fun going through Mary's purse with her, and digging through old papers and cards, and reliving the moments reflected in these documents. It is a special gift to be welcomed into some one's life, and I am happy that despite what I am going through I have not shut myself off to this important aspect of life.
When I arrived home, I couldn't get over what I saw. Outside my window, part of my third floor balcony was MISSING. In addition, there were two guys on the balcony drilling, and there was also an enormous crane moving back and forth. My complex told us they were going to be fixing balconies, but I had no idea fixing meant demolishing and rebuilding the structure! This is an enormous, loud, messy, and disturbing task. I now feel like I have NO privacy or peace anywhere in my life. I hate to say it, but I was thrilled to come back to the PICU tonight, because the noise in the PICU is a blessing in comparison to the sound outside my balcony door! Sometimes I wonder what kind of curse we are living under!
When I arrived home, Margaret and Mattie were sitting on the couch together and watching the demolition. Margaret then helped me clean up the toys, the fort, and the kitchen. So that I did not need to deal with this myself. Thank you Margaret for watching Mattie for so long, and doing a great job entertaining the boys. While we were cleaning, Mattie was super quiet, and listless on the couch. Never a good sign for Mattie, so I instantly felt him. He felt hot to the touch, so I grabbed the thermometer. Sure enough he had a fever. It was low grade at home. I proceeded to call Dr. Synder, who wanted Mattie to come in. When Mattie heard that he had to go back to the hospital, he became hysterical! He refused to let me take his temperature by mouth, the best I could do was under the arm, and he was crying and clung to me. I was able to calm him down, and then Margaret sat with him, while I raced around putting our hospital bags together. I really appreciated Margaret's help and support. Fortunately I never really unpack our hospital things, so that I can turn around in a moment's notice. I also called Peter, and he raced home from work to help me transport Mattie. Mattie was so upset about going back to the hospital, that it really took both of us to take him. Peter drove, and I sat next to Mattie in the back seat. It was just heartbreaking to have to take Mattie back and to know that Easter is approaching and we will be in the hospital. Even in Mattie's sick state today, he did not want Margaret to leave. He wanted to bake cupcakes with her, but of course, he had no energy what so ever to do this. None the less, I was happy he connected with Margaret while I was gone.
We want to thank JP, our neighbor, for bringing Mattie a pizza today and we also want to thank the Dunn family for a very generous and tasty dinner. We thank you especially for the fresh fruit, the beautiful rose plant, and the wine.
Specifics on Mattie. Mattie is neutropenic, meaning that his white blood cell count is very low and makes him susceptible to illness. Mattie's absolute neutrophil count (The real number of white blood cells that are neutrophils. Neutrophils are key components in the system of defense against infection.) tonight is 158, and his count was 1400 on Monday. So that is a major drop. In addition, Mattie has terrible stomach pains, which most likely are caused by mucositis, which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy. In addition, Mattie's hemoglobin level fell today. So at the moment, Mattie is on two different antibiotics to fight the fever and infections, he is getting a blood transfusion (which runs for four hours, and they are checking Mattie's blood pressure and temperature EVERY 15 minutes), and Mattie is being given morphine every four hours to combat the mucositis pain. So I would say this last round of chemo hit Mattie hard. But this has been a true statement each time Mattie has had infusions of ifosfamide and/or etoposide. I have tracked Mattie's neutropenic admissions, and recently he has developed neutropenic fevers on a Wednesday after being discharged from the hospital on a Saturday. So my gut said he was going to be sick today, and I am saddened to see that I was right.
When we got to the PICU tonight, the HEM/ONC nurses couldn't do enough to help us. In fact, we were initially assigned a room without a shower, and the nurses and staff helped us get a lovely room instead. In addition, Laura and Meg (Linda's interns) came by to spend time helping us, and everyone signed Mattie's cast! In addition, Dr. Synder (Mattie's doctor) came up to see us and checked in with us and Mattie. So I felt like everyone was trying their hardest to make a difficult situation more bearable.
I end tonight's blog with a message from my friend, Charlie. Charlie wrote, "What an awful day. Tanja, thank you so much for stepping up and helping; it is pretty clear that the day could have been much worse were it not for your "bag of tricks". I was not expecting this sort of reaction from Mattie; it seems as though being on his stomach made him experience a level of vulnerability that was just more than he could deal with. It must have taken great courage for him to put himself back on his tummy again. However, once the fear and anxiety started I think he could not find his way back to his emotional "center" as that point is pretty fragile and easy to disrupt. I think that might be why you saw the continuing emotional swings today-much of that was an attempt to regain control of his environment since he could not regain emotion and physical control of himself. It may also be that somewhere inside Mattie sees the cast as a "step backwards" from the progress he has made in learning to walk. All of this is very anxiety provoking and frightening I am sure. I know most adults would not find it so easy to handle either."
April 7, 2009
Tuesday, April 7, 2009
Tuesday, April 7, 2009
I wish I could say once the casting was over things improved, but they did not. Tanja helped and loaded us into our car, and I was ready to start the car, when Mattie broke out in tears. So I shut the car off, and jumped into the back seat. After he calmed down, he fell asleep. In fact, when I got home, I stayed in the car garage for 30 minutes to let him nap some more. But Mattie has been edgy and agitated all day. He hasn't given Peter and I a minute's peace tonight. He goes from crying to anxious in two seconds. He wanted IV pain medication tonight, but of course that isn't happening. It is hard enough for an adult to understand and accept the discomfort of having a leg in a cast, but a seven year old who needs to move and bend his knee, this is quite another story. It has been virtually impossible to do anything tonight and several times Peter and I have landed up yelling at each other because the situation is so reminiscent of the fall. Where we felt hopeless and helpless. During my last attempt, I sat next to Mattie and rationalized why this cast is so necessary. He says he doesn't care whether he ever walks again, but I know that is not how he really feels. This is just fear talking. You can throw all the medicine you want to at Mattie but unless we work through some of the underlying issues, the medicine will get us only so far.
I remember reading another blog maintained by a fellow osteo mom who I have befriended. Kristi wrote that osteo parents are living "hell on earth." I couldn't have said it better myself. As I was driving through the city today, I saw people jumping in and out of government buildings and museums and all I could think is I used to be just like this. Clueless and happy. Clueless, because I did not realize how in an instant sickness could strike down a family in its tracks and with it take away a future, happiness, and perspective. That may sound harsh, and perhaps one should be more optimistic, and I am at times, but this is the sad reality of living with osteosarcoma. The world as I know it, is gone. It will never and can never be the same, and I am envious of others who don't have to spend their days in hospitals and with the intense fear of losing a child.
Quote of the day: "Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience." ~ Anonymous
I find it particularly interesting that Mattie is very clingy with us while we are home this week. His need for attention waxes and wanes (like any child), but a week or so ago, I noticed that Mattie is uncomfortable being at home without someone in the room with him. This level of intensity along with an already intense situation makes for a tiring and stressful combination. We haven't discussed Mattie's pending surgery with him yet, and I do not look forward to this discussion, because I know this will be met with a lot of fears and frustration.
Before I could take Mattie to Washington Hospital Center today, I had several nursing tasks to perform. I had to disconnect Mattie from his nighttime IV hydration, flush Mattie's central lines, administer IV kytril (an anti-emetic), and finally, infuse GCSF (a white blood cell growth factor) through Mattie's central line. By the time all of this was done, I felt like I already put in a full morning. Then I had to get Mattie dressed and somewhat prepared for his meeting with Dr. Bob. Ann was going to meet me at the hospital today and help me with Mattie, but she wasn't feeling well, so Ann sent Tanja in her place. Tanja met me in Dr. Bob's waiting area at Washington Hospital Center. The hospital was busy today, and we waited in the area for about an hour. Tanja came with her bag of tricks, and also gave Mattie two wonderful Easter baskets that the Canterbury's created for Mattie. Mattie went to preschool with Sara Catherine Canterbury, and it was so lovely for Mattie to have these special and thoughtful distractions today. Mattie loved all his basket items, and is very excited to grow "sea monkeys." We started the process tonight. If we actually get these creatures to live a few days, I will take a picture of them and try to describe what they are in case you are not aware of them. Mattie also loved the beautiful Easter cookies that Sara Catherine made with her mom.
Tanja brought touchable bubbles to the hospital today, and not only did Mattie love them, but even the adult patients got a kick out of the bubbles. I think seeing bubbles brings a smile to any one's face! It was a joy to see this, and I especially loved these distractions, because several patients in the waiting room were watching a very lude daytime talk show. I turned Mattie away from the TV, and if I had my typical level of energy (which I don't), I would have challenged several patients on their viewing pleasure especially when there are younger minds and ears present in the waiting area. Tanja also brought Mattie some wonderful bug samples, that had been preserved in blocks of glass. Mattie got to examine these bugs with a magnifying glass and also learn some facts about the bugs. This is a wonderful gift for Mattie. Needless to say, Tanja really helped to entertain and engage Mattie until Dr. Bob could see him.
Dr. Bob met Mattie in the waiting area and took us back to a room. He told Mattie that he would have him lie down on his tummy for a while, so that gravity could help straighten out his right leg by the knee. When I heard this, my first reaction was, "this should be interesting." Mattie has NEVER liked being on his tummy, not as a baby, toddler, or child. It is a position that brings him great discomfort. Mattie was brave enough to put up with this position for a few minutes, so as to not disappoint Bob, but when Bob left the room for about 30 minutes (for gravity and my leg massage to do its work), Mattie proceeded to become highly agitated. Mattie began to cry and said that he had to roll over and sit up. There was NO rationalizing with him. After all it is hard to rationalize with someone who is very scared and anxious.
So while Bob was out of the room, I helped Mattie sit back up. I continued to massage his leg, but I figured if I did not comfort Mattie, there was NO way on earth a cast was going on his leg today. With Mattie you can easily get to the point of no return, and I had to cut that off before we got there. While I was doing this, Tanja was practically doing a song and a dance to try to distract Mattie and take his mind off of what he was doing. It wasn't an easy process. I even told Mattie a funny story about how Peter asked our obstetrician what type of belly button (innie or outtie) Mattie would have after he was born. I still remember Peter asking the doctor this question with a straight face. Any case, Mattie was fascinated by this line of trivia, but it did not last long. Tanja pulled out martian mud, a gooey substance that reminds me of gak. As the minutes went on, I then convinced Mattie to get back on his stomach. I told him that he should get back on his stomach, and if he did Dr. Bob would never have known that he wasn't on his tummy the whole time. This seemed to catch Mattie's attention. He then complied and got back on his tummy! Whatever it took!
When Bob came back into the room, I could tell Mattie wasn't happy with the process. He kept saying he wanted the process to be done, and he wanted to go. As the casting got under way, Mattie was screaming out for his wheelchair, which was in the hallway. Mattie did not want the wheelchair per se, but the comfort of what the wheelchair provided, an escape plan out of the casting room. Mattie was not only agitated for the casting, but I would say he was having a full blown anxiety episode. There was a real look of panic in his eyes, and he was kicking his legs and wanted off the table. Tanja snapped a picture of us before the real panic unfolded. I do want to comment, that the necklace I am wearing (which you can't really see) was made by Mattie. He made it in clinic yesterday with Deborah, the bead lady, and it is simply priceless to me. How Bob was able to cast Mattie's leg is beyond me. Between the kicking and screaming, I would have given up, but Bob is grace under pressure. Or a man on a mission. He got the mission accomplished.
I wish I could say once the casting was over things improved, but they did not. Tanja helped and loaded us into our car, and I was ready to start the car, when Mattie broke out in tears. So I shut the car off, and jumped into the back seat. After he calmed down, he fell asleep. In fact, when I got home, I stayed in the car garage for 30 minutes to let him nap some more. But Mattie has been edgy and agitated all day. He hasn't given Peter and I a minute's peace tonight. He goes from crying to anxious in two seconds. He wanted IV pain medication tonight, but of course that isn't happening. It is hard enough for an adult to understand and accept the discomfort of having a leg in a cast, but a seven year old who needs to move and bend his knee, this is quite another story. It has been virtually impossible to do anything tonight and several times Peter and I have landed up yelling at each other because the situation is so reminiscent of the fall. Where we felt hopeless and helpless. During my last attempt, I sat next to Mattie and rationalized why this cast is so necessary. He says he doesn't care whether he ever walks again, but I know that is not how he really feels. This is just fear talking. You can throw all the medicine you want to at Mattie but unless we work through some of the underlying issues, the medicine will get us only so far.We want to thank the Kane family for a lovely dinner tonight. The cupcakes are helping me through the night, and I can see it is going to be a long one. We all enjoyed your homemade lasagna. Thank you for the continued support.
Peter and I signed Mattie's cast tonight, and we are trying to lighten the mood, but it is hard. Check out how Peter and I have signed the cast.
Left: Peter's signature line to Mattie is "I love you" and my signature line to Mattie is "You are my sunshine."
Left: Peter's signature line to Mattie is "I love you" and my signature line to Mattie is "You are my sunshine."
Right: Peter also wrote, "Mama Lover" on Mattie's cast, because Peter jokes that we are super close to each other. Mattie and I were close before cancer, but cancer has only solidified this bond.
I remember reading another blog maintained by a fellow osteo mom who I have befriended. Kristi wrote that osteo parents are living "hell on earth." I couldn't have said it better myself. As I was driving through the city today, I saw people jumping in and out of government buildings and museums and all I could think is I used to be just like this. Clueless and happy. Clueless, because I did not realize how in an instant sickness could strike down a family in its tracks and with it take away a future, happiness, and perspective. That may sound harsh, and perhaps one should be more optimistic, and I am at times, but this is the sad reality of living with osteosarcoma. The world as I know it, is gone. It will never and can never be the same, and I am envious of others who don't have to spend their days in hospitals and with the intense fear of losing a child.Mattie's meltdowns are so numerous tonight, I have lost track of the number we are on now. This last one was over the fact that we were out of golden oreos. Mattie's friends who are coming over tomorrow to help me, are taking care of this need, but wow! Of course I keep reminding myself it is not about the oreos really, but none the less, when you are frantically trying to calm your child down, if oreos are going to help, rest assure I am going to get oreos.
I would like to end tonight's blog with a message from my friend Charlie. Charlie wrote, "Another exhausting day in the hospital. And to know that it has to be done again and again so that Mattie will make it to the other side and regain his strength and health. I marvel at your strength and endurance and I know there really is no other choice but that doesn't lessen the achievement in my view. I am sorry that you will have yet another hurdle with Mattie's cast to deal with but hopefully it will resolve the problem and the results will be well worth the trouble. I can already visualize Mattie decorating the cast with rainbows and roaches; should be an interesting dichotomy. I hope your day at Washington Hospital Center is not too taxing and that you get to relax a little at some point."
April 6, 2009
Monday, April 6, 2009
Monday, April 6, 2009
Mattie handled his MTP-PE infusion very well, but you really do have to wonder how medical professionals expect a seven year old to be so good, patient, and compliant for SEVEN hours!? It is hard for an adult to spend that amount of time in a clinic, much less a child. Thank God for Jenny and Jessie, otherwise, I wouldn't have a prayer entertaining Mattie for that long.
I end tonight's blog with a meaningful story my mom sent to me! It is entitled, The Buzzard, Bat, and Bumble Bee.
THE BUZZARD:
If you put a buzzard in a pen that is 6 feet by 8 feet and is entirely open at the top, the bird, in spite of its ability to fly, will be an absolute prisoner. The reason is that a buzzard always begins a flight from the ground with a run of 10 to 12 feet. Without space to run, as is its habit, it will not even attempt to fly, but will remain a prisoner for life in a small jail with no top.
Quote of the day: Where a flower blooms, there is hope. ~ Lady Bird Johnson
Peter helped me get Mattie ready for his clinic appointment today. That was very helpful, because trying to get Mattie up, dressed, and loaded into the car (wheelchair and all) is becoming more wearing with each week. In fact, the whole pace is getting tiring but in all reality there is no end in sight for us. I had the opportunity today to read a couple of other osteosarcoma blogs and learned that two young children with this horrible disease are at the end of their fight. Sammie is 11 years old, and Darian is 6 years old. I ask that you pray for these children and their families. Can you imagine having to have hospice in your home in order to help ease the pain and suffering of your child in their final hours? How on earth do you say good-bye to your child? I have NO answers. I am speechless and in great awe of these courageous families.
Mattie had a MARATHON clinic appointment today. We arrived at the clinic at 11am and we did not get home until 6pm! I was thoroughly wiped out in the end. What made this experience doubly bad was the simple fact that it was freezing in the clinic. It felt like there was air conditioning blowing which would be okay if you were running around, but Mattie and I were sitting still. I was so cold that when I loaded Mattie back into our car, I turned my seat heater on to thaw out. I have a chill that I still can't get rid of. The other issue was it was an absolute zoo in the clinic today. There were kids and parents everywhere. I am not sure who I felt worse for the nurses and Jenny and Jessie, who had to balance all of this, or the parents who had to deal with the chaos, noise, and slow turn around time.
I am happy to report that Mattie got a dosage of kytril (an anti-emetic) in clinic, and we have six more dosages headed to our home tonight thanks to our in-home medication supplier. Wonderful! Mind you if we had this to begin with, Mattie would have had a better Sunday. I tell you I am learning SO many lessons! Mattie had a busy day in clinic. He brought a toy train with him and he incorporated this train into his art work. The train is special to him, since his buddy Zachary gave him this train from his recent trip to London. Mattie is a proud owner of a toy replica of the London Underground. In fact, Mattie painted a ceiling tile of this train. Mattie had a co-artist today, Maya. Maya is 8 years old, and we have seen her in clinic for several months now. Mattie and Maya have a lot in common, with similar personalities. Normally Mattie doesn't take well to other children joining him as he is painting, but Maya found a way to jump right in. So much so, that they landed up painting a second ceiling tile together. Check it out!
Left: Mattie's Underground with Maya's Sun!
Right: Mattie and Maya painting one of my favorite symbols, a rainbow.
Mattie and Maya had a fascinating conversation together. Maya has two brothers, and she asked Mattie if he had siblings. He told her that he did not. She then acknowledged that he was an only child. Her reaction to this at first was it was neat! She said that he must be able to do whatever he wants to and doesn't have to share anything. Mattie piped in and told her that this wasn't true. That Peter and I have expectations for him and also expect him to share his things with others. Maya went on and said that being an only child must be very lonely. At which point, Jenny (one of our art therapists), told Maya to ask Mattie if her statement was true? I suspect Jenny had Maya ask Mattie because she felt Mattie leads anything but a lonely existence. Mattie's response was very sweet. Mattie said he was very happy and is never lonely! That was a special gift to hear today. Like Mattie, I am an only child, and in all reality, I have and am never alone. After all, you could have many siblings and not get a long with any of them. You can't pick your family, but you can pick your friends, and God knows I have the best out there!
Later in the afternoon, two other small children were telling Jenny and Jessie that they have cell phones of their own. Mattie looked at me dumb founded. He wanted to know why he did not have a phone. I laughed! I asked him who on earth he would be calling if he had a cell phone? You have to understand that Mattie isn't a big phone talker at all, and strongly dislikes when I am on the phone. So I thought this whole conversation was a riot. Any case, Mattie said he needed a cell phone so he could call me! Hysterical! Especially since we spend most of our days and nights together! The irony about today, is it captures an observation I made months ago. There really should be group play dates for children within the clinic on a regular basis. It is through these group activities and interactions that I learn more about how Mattie really feels and is processing his illness. In fact, the first time we met Maya, she was talking to some of us at the art table, about how painful it is to get an IV placed into her arm so she could receive medicine. Mattie was engrossed in his art project at the time, and I figured he was tuned out, as he does when conversation is taking place. However, after Maya was talking for a bit, Mattie looked up and said, "I understand, I felt that way too." It was after that dialogue with each other, that they made a connection.
Mattie handled his MTP-PE infusion very well, but you really do have to wonder how medical professionals expect a seven year old to be so good, patient, and compliant for SEVEN hours!? It is hard for an adult to spend that amount of time in a clinic, much less a child. Thank God for Jenny and Jessie, otherwise, I wouldn't have a prayer entertaining Mattie for that long.
When Mattie and I arrived home this evening, Peter helped us upstairs. Soon there after, we all sat at the table together and had a lovely dinner thanks to the Frye's. Thank you Julie and Alex for the paint and peel window art! We are going to enjoy doing this together! I appreciate your support, because I was in no mood to deal with food when I got home from clinic.
As we head into Tuesday, I am driving Mattie to Washington Hospital Center to meet up with Dr. Bob. Bob is placing a cast on Mattie's right leg and from my understanding the cast will remain on Mattie's leg for three weeks. This should be interesting because we will have to learn how to negotiate our way around in a cast. We have had to deal with harder things, but with each change there is a new challenge.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Sunday was another day of ups and downs. Sometimes it is a case of the "best laid plans" but unfortunately, even the best plans are tossed out the window when illness intrudes. I am sorry Mattie became ill and your plans for the day were derailed; but I am glad you and Pete still managed to get in a little relaxation and pampering, I am sure that helps in the short run. I hope today's hospital visit goes well and uneventfully, that Mattie gets his needed meds and feels better so that you can enjoy some days away from the hospital before the next round of chemotherapy."
I end tonight's blog with a meaningful story my mom sent to me! It is entitled, The Buzzard, Bat, and Bumble Bee.
THE BUZZARD, BAT, AND BUMBLE BEE
THE BUZZARD:
If you put a buzzard in a pen that is 6 feet by 8 feet and is entirely open at the top, the bird, in spite of its ability to fly, will be an absolute prisoner. The reason is that a buzzard always begins a flight from the ground with a run of 10 to 12 feet. Without space to run, as is its habit, it will not even attempt to fly, but will remain a prisoner for life in a small jail with no top.
THE BAT:
The ordinary bat that flies around at night, a remarkable nimble creature in the air, cannot take off from a level place. If it is placed on the floor or flat ground, all it can do is shuffle about helplessly and, no doubt, painfully, until it reaches some slight elevation from which it can throw itself into the air. Then, at once, it takes off like a flash.
The ordinary bat that flies around at night, a remarkable nimble creature in the air, cannot take off from a level place. If it is placed on the floor or flat ground, all it can do is shuffle about helplessly and, no doubt, painfully, until it reaches some slight elevation from which it can throw itself into the air. Then, at once, it takes off like a flash.
THE BUMBLEBEE:
A bumblebee, if dropped into an open tumbler, will be there until it dies, unless it is taken out. It never sees the means of escape at the top, but persists in trying to find some way out through the sides near the bottom. It will seek a way where none exists, until it completely destroys itself.
A bumblebee, if dropped into an open tumbler, will be there until it dies, unless it is taken out. It never sees the means of escape at the top, but persists in trying to find some way out through the sides near the bottom. It will seek a way where none exists, until it completely destroys itself.
PEOPLE:
In many ways, we are like the buzzard, the bat, and the bumblebee. We struggle about with all our problems and frustrations, never realizing that all we have to do is look up! That's the answer, the escape route and the solution to any problem! Just look up.
Sorrow looks back, Worry looks around, But faith looks up!
In many ways, we are like the buzzard, the bat, and the bumblebee. We struggle about with all our problems and frustrations, never realizing that all we have to do is look up! That's the answer, the escape route and the solution to any problem! Just look up.
Sorrow looks back, Worry looks around, But faith looks up!
April 5, 2009
Cherry Blossoms Festival Day
Sunday, April 5, 2009
Quote of the day: In honor of the Cherry Blossoms Festival in DC today
"Spring blossoms - the cherry blossom, plum blossom, peach blossom - suddenly appear on seemingly dead branches, heralds of the coming spring. They represent the gentle, almost unnoticed flowering of enlightenment, the surprisingly quiet recognition of the Buddha-mind. These spring blossoms appear only after the hard, lonely winter of meditation and spiritual practice, yet when they peek forth, their appearance is natural, effortless. Spring blossoms are the new life that emerges from the dead branches of the little self, they simply emerge when the limited ego has passed through its seasons and withered away." ~ Anonymous
Mattie woke up this morning and appeared to be hungry. He had his oatmeal and even some eggs. But that was the last time he ate for the day. It went down hill from there. On Thursday, as we were preparing for our pending discharge on Saturday, I asked the medical resident to let our attending physician know that Mattie would need IV kytril at home for the weekend. She assured me she would tell the doctor. However, my message did not get relayed and needless to say I have no IV kytril to give Mattie. Mattie seemed to be fine on Saturday, so I did not give the lack of kytril much thought.
This afternoon, Liza (one of Mattie's favorite hospital volunteers) came over to play with Mattie. I was looking forward to her visit, because I had planned for over a week to take Peter to a spa for a massage. He wouldn't do this for himself, but I knew he wouldn't refuse it if I made the arrangements. Our day was supposed to go like this, going to the spa, a late lunch, and then an opportunity to actually look around the mall. Buying clothes for one's self becomes a thing of the past, when you are trapped between the hospital and home. So I think I built up this day, and never really prepared myself for the fact that Mattie could get sick.
At the spa, Peter had a massage, which lasted longer than my manicure and pedicure. Which was fine, because I camped out in the serenity room at the spa, and got to enjoy hot tea. Jasmine tea to be specific. The smell of jasmine is intoxicating and somehow transports you to a better place. While in the room, I got a call from Ann (our team Mattie coordinator and dear friend), who checks on me daily. I also called my mom, since I rarely get the time to chat with her. Balancing Mattie and phone calls is virtually impossible. Not to mention while at the hospital, I live in a fishbowl, with people popping in and out of our room. Not conducive to personal phone calling. After Peter's massage was done, he came to get me, and I could see that his face looked more relaxed. It was a beautiful sight to see. It won't last long, but I am happy I was able to accomplish this for two hours.
We then left the spa and headed to lunch. We had just sat down at the table, and mind you we were starving, when my cell phone rang. Liza called, and she did the right thing, to tell me that Mattie was vomiting. I could hear Mattie was upset in the background, and I told Liza we would head home rather than returning in the evening. Peter and I jumped up, got in the car, and proceeded home. That sounds easy enough in theory, but it is Cherry Blossoms Festival day in DC, and traffic was horrible. What should have been a 20 minute trip home, was over an hour. While stuck in traffic, I just continued to get more and more agitated, thinking that I should be home to help Mattie and assess the situation, but there was no way I could get there. I was driving myself crazy, and probably not doing much for Peter either. I started the day with a headache, and it only got worse as the day went on. So while Peter was driving, I called Liza back to see what was going on. Mattie had settled down a bit, but still wanted us home. I at least was happy to hear it wasn't an emergency.
When we got home, we took Mattie's temperature. He was fine. But he did look pastie and a little listless. Mattie did not want Liza to leave right away, so Liza stayed an extra 30 minutes, while Peter and I walked to the grocery store to pick up some items. As the evening continued Mattie continued to vomit, and large quantities of fluid. The irony is he hadn't been eating or drinking anything since the morning. So I called Dr. Synder, Mattie's doctor. She assured me that Mattie would have access to IV kytril tomorrow. We had two options tonight, to either keep monitoring Mattie at home, or take him into the PICU. Going back wasn't an opinion we wanted to hear right now. Mattie gets IV hydration at home, so I can replace the fluids he lost through vomiting, and Peter and I finally rationalized with Mattie to take his oral Zofran (an anti-emetic). Normally Mattie would refuse an oral medication, but he was tired of vomiting, and at that point was willing to try anything to feel better. Good move Mattie!
Peter and I want to thank JP, our neighbor, for dropping off Mattie's favorite Dunkin Donuts this afternoon. That was so thoughtful, since in our neck of the woods, locating vanilla frosted donuts is like looking for a needle in a haystack. We also want to thank Eva K. for a lovely dinner from the Cheesecake Factory. It was funny, because this is the restaurant Peter and I were at today, before we had to get up and leave. So Eva and I must have been on the same wavelength. Thank you for a very generous dinner and cheesecake! As I am typing tonight's blog, Mattie is watching a Scooby Doo marathon on TV. It couldn't have come at a better time!
On Monday, Mattie heads to the clinic for a MTP-PE infusion. So we will be in the clinic for most of the day.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Wow, what a day. I am so glad it was special for Mattie but I am sure it was completely exhausting for you and Pete. How wonderful though of all those people to come and share their time, often their precious time off from the hospital with Mattie. I do think you are "spot on" about why Mattie insists on helping; while the results can be frustrating for everyone, he feels it is necessary to assert his independence and growing self reliance which bodes well for his future. So while things may not always go well, it may make sense to try to plan for Mattie to help in the future, by trying to select tasks where he will be successful. Think of it as mental/emotional therapy to go along with his physical therapy."
I end tonight's blog with a song Charlie sent me today. I had heard it before on the radio, but hadn't thought about it in a while. Mostly because I heard it before Mattie was diagnosed with cancer. The song is entitled, Sarabeth, and is sung by Rascal Flatts. This song is used in a fund raising radiothon for St Jude Children's hospital. The video is very touching, and left me crying. If wonder if others have this same reaction? My hunch is the answer is YES.
http://www.youtube.com/watch?v=JhnU9IYTD9c
Quote of the day: In honor of the Cherry Blossoms Festival in DC today
"Spring blossoms - the cherry blossom, plum blossom, peach blossom - suddenly appear on seemingly dead branches, heralds of the coming spring. They represent the gentle, almost unnoticed flowering of enlightenment, the surprisingly quiet recognition of the Buddha-mind. These spring blossoms appear only after the hard, lonely winter of meditation and spiritual practice, yet when they peek forth, their appearance is natural, effortless. Spring blossoms are the new life that emerges from the dead branches of the little self, they simply emerge when the limited ego has passed through its seasons and withered away." ~ Anonymous
Mattie woke up this morning and appeared to be hungry. He had his oatmeal and even some eggs. But that was the last time he ate for the day. It went down hill from there. On Thursday, as we were preparing for our pending discharge on Saturday, I asked the medical resident to let our attending physician know that Mattie would need IV kytril at home for the weekend. She assured me she would tell the doctor. However, my message did not get relayed and needless to say I have no IV kytril to give Mattie. Mattie seemed to be fine on Saturday, so I did not give the lack of kytril much thought.
This afternoon, Liza (one of Mattie's favorite hospital volunteers) came over to play with Mattie. I was looking forward to her visit, because I had planned for over a week to take Peter to a spa for a massage. He wouldn't do this for himself, but I knew he wouldn't refuse it if I made the arrangements. Our day was supposed to go like this, going to the spa, a late lunch, and then an opportunity to actually look around the mall. Buying clothes for one's self becomes a thing of the past, when you are trapped between the hospital and home. So I think I built up this day, and never really prepared myself for the fact that Mattie could get sick.
At the spa, Peter had a massage, which lasted longer than my manicure and pedicure. Which was fine, because I camped out in the serenity room at the spa, and got to enjoy hot tea. Jasmine tea to be specific. The smell of jasmine is intoxicating and somehow transports you to a better place. While in the room, I got a call from Ann (our team Mattie coordinator and dear friend), who checks on me daily. I also called my mom, since I rarely get the time to chat with her. Balancing Mattie and phone calls is virtually impossible. Not to mention while at the hospital, I live in a fishbowl, with people popping in and out of our room. Not conducive to personal phone calling. After Peter's massage was done, he came to get me, and I could see that his face looked more relaxed. It was a beautiful sight to see. It won't last long, but I am happy I was able to accomplish this for two hours.
We then left the spa and headed to lunch. We had just sat down at the table, and mind you we were starving, when my cell phone rang. Liza called, and she did the right thing, to tell me that Mattie was vomiting. I could hear Mattie was upset in the background, and I told Liza we would head home rather than returning in the evening. Peter and I jumped up, got in the car, and proceeded home. That sounds easy enough in theory, but it is Cherry Blossoms Festival day in DC, and traffic was horrible. What should have been a 20 minute trip home, was over an hour. While stuck in traffic, I just continued to get more and more agitated, thinking that I should be home to help Mattie and assess the situation, but there was no way I could get there. I was driving myself crazy, and probably not doing much for Peter either. I started the day with a headache, and it only got worse as the day went on. So while Peter was driving, I called Liza back to see what was going on. Mattie had settled down a bit, but still wanted us home. I at least was happy to hear it wasn't an emergency.
When we got home, we took Mattie's temperature. He was fine. But he did look pastie and a little listless. Mattie did not want Liza to leave right away, so Liza stayed an extra 30 minutes, while Peter and I walked to the grocery store to pick up some items. As the evening continued Mattie continued to vomit, and large quantities of fluid. The irony is he hadn't been eating or drinking anything since the morning. So I called Dr. Synder, Mattie's doctor. She assured me that Mattie would have access to IV kytril tomorrow. We had two options tonight, to either keep monitoring Mattie at home, or take him into the PICU. Going back wasn't an opinion we wanted to hear right now. Mattie gets IV hydration at home, so I can replace the fluids he lost through vomiting, and Peter and I finally rationalized with Mattie to take his oral Zofran (an anti-emetic). Normally Mattie would refuse an oral medication, but he was tired of vomiting, and at that point was willing to try anything to feel better. Good move Mattie!
Peter and I want to thank JP, our neighbor, for dropping off Mattie's favorite Dunkin Donuts this afternoon. That was so thoughtful, since in our neck of the woods, locating vanilla frosted donuts is like looking for a needle in a haystack. We also want to thank Eva K. for a lovely dinner from the Cheesecake Factory. It was funny, because this is the restaurant Peter and I were at today, before we had to get up and leave. So Eva and I must have been on the same wavelength. Thank you for a very generous dinner and cheesecake! As I am typing tonight's blog, Mattie is watching a Scooby Doo marathon on TV. It couldn't have come at a better time!
On Monday, Mattie heads to the clinic for a MTP-PE infusion. So we will be in the clinic for most of the day.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Wow, what a day. I am so glad it was special for Mattie but I am sure it was completely exhausting for you and Pete. How wonderful though of all those people to come and share their time, often their precious time off from the hospital with Mattie. I do think you are "spot on" about why Mattie insists on helping; while the results can be frustrating for everyone, he feels it is necessary to assert his independence and growing self reliance which bodes well for his future. So while things may not always go well, it may make sense to try to plan for Mattie to help in the future, by trying to select tasks where he will be successful. Think of it as mental/emotional therapy to go along with his physical therapy."
I end tonight's blog with a song Charlie sent me today. I had heard it before on the radio, but hadn't thought about it in a while. Mostly because I heard it before Mattie was diagnosed with cancer. The song is entitled, Sarabeth, and is sung by Rascal Flatts. This song is used in a fund raising radiothon for St Jude Children's hospital. The video is very touching, and left me crying. If wonder if others have this same reaction? My hunch is the answer is YES.
http://www.youtube.com/watch?v=JhnU9IYTD9c
Subscribe to:
Posts (Atom)
