The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
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!
April 10, 2009
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."
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.
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!
April 8, 2009
April 7, 2009
Left: Peter's signature line to Mattie is "I love you" and my signature line to Mattie is "You are my sunshine."
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.
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 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.
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.
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
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.