Quote of the day: "Kindness is more than deeds. It is an attitude, an expression, a look, a touch. It is anything that lifts another person." ~ Anonymous
Despite some glitches in today's scans, which I will explain shortly, I have to say I was surrounded by many people who performed various acts of kindness. I think everyone who dealt with us at the hospital knew how stressful today's scans were, and really tried to help make it go smoothly. For that I am forever grateful, and I feel the need to comment on this. In particular Peter and I couldn't have gotten through the day without our immediate support team of Ann (who was with me for about four and a half hours at the hospital!), Linda (who entertained and kept Mattie engaged and happy for MANY hours), Catherine (our case manager who helped me tremendously work through Georgetown's registration system), and of course Jenny and Jessie who occupied Mattie for the afternoon hours in the clinic. How on earth do you thank such incredible people? I don't know! Also, I want to thank all of you who sent me e-mails last night and today and of course all of you who kept Mattie in your prayers all day. Your support made all the difference in the world.
Peter helped me get Mattie up and ready to go to the hospital bright and early this morning. Poor Mattie did not know what hit him, he was very groggy when Peter woke him up! I got Mattie washed up a bit, and Peter got Mattie dressed, flushed his central lines, and also helped load us into the car. Peter made the morning bearable and helped me get Mattie to the hospital on time! We also got a wonderful parking space at the hospital. So things were aligning this morning! When we entered the hospital, I had to go through admissions for a day procedure, and before we headed up to nuclear medicine, Mattie spotted Jenny in the gift store, and wanted to wait to say hello to her. It was very sweet. Jenny started our day off on the right note. When Mattie and I got up to nuclear medicine, things started to fall through the cracks. It began with the simple fact that no one had our doctor's order for a bone scan today. However, at least this department was proactive and called around to get it for me, so I wouldn't have to schlep all over the hospital. While we were waiting in the nuclear medicine reception area, Linda found us. Linda brought a cart load of activities for Mattie. Mattie was looking forward to seeing Linda today, and from the moment we parked the car until he saw her, he was worried about whether Linda would find us. In this reception area, I had the opportunity to meet a teen with osteosarcoma. He was diagnosed in 2005. His mom told me that since 2005, he has had reoccurrences twice. Mind you this child only had one tumor site in his leg in 2005, but then a year later it spread to his lungs, and now to an area of the brain. It was a chilling story, and revealing, because it is the luck of the draw who will never have a reoccurence and who will be plagued with this horrible disease again and again.
At around 9am, Mattie had a dye injected into him at the nuclear medicine department. The dye is designed to help light up active bone sites (usually indicative of cancer) within Mattie's body while undergoing a bone scan. The dye has to sit and circulate in his body for three hours. So his bone scan was scheduled for noon. After the dye was injected, Linda and I took Mattie to the Lombardi Clinic to wait until 10am, for his CT scan. It was there we did a blood draw, so that we wouldn't have to wait for blood results after all the scans were done! Linda and I were moving at a clip today, because after 20 minutes in the clinic, we proceeded to the CT scan department. While in route, we met up with Ann. Ann also had her bag of tricks in hand, along with hot tea and wonderful Irish Soda bread that she made! Thankfully I had Linda and Ann with me today, because it was from this point on that chaos unfolded.
When we got to the CT department, it was a three ring circus. I found a hole in Georgetown's system today, a thing I seem to be good at doing. Mattie's CT was scheduled through the sedation department because in the past Mattie would get very scared of testing, and would need to be sedated to complete the task. So today, we had back up sedation, just in case Mattie couldn't go through the scans without medication. Linda and I were confident Mattie could do it, but if not, we wanted to make sure that the scans could be completed, which is why we always do back up sedation. Okay, so in theory the sedation group booked our scan. However, when we got to the CT department, they had no documentation that Mattie was getting a CT scan today, and because they couldn't find his name on the schedule, they stated he couldn't get the scan. Not something you tell a mom who is already on the edge of nervousness. There is no way I was going to postpone this torture for another day! So I began to find out what paper work was needed by the department in order to process the request for a scan. So I left Mattie with Linda and Ann, and I went back to the Lombardi Clinic and was fortunate to find Catherine Silver, our case manager. She helped me every step of the way. Catherine printed out Mattie's CT order for me and we both walked it to the radiology department where the CT scan is located. But forget it, even with an order, they couldn't find Mattie in the system. They said that we would have to talk with the sedation department who booked Mattie's scan. So Catherine and I left the first floor and found our way to the fifth floor to pay a visit to the sedation department to find out where the snafu was taking place. Clearly there was a breakdown in communcation between the CT and sedation departments. In a nutshell, because Mattie was on the books for having back up sedation (meaning he doesn't need planned sedation, but if he got scared the back up plan was to give sedation so that the scans would take place), we did not have a sedation nurse assigned to us, and therefore did not have the appropriate stickers and documentation to admit Mattie for a CT scan. If Debbi (our sedation nurse who was going to be with us today but who has been out sick all week) were with us, she would have had this documentation and we wouldn't have had this problem, but because we were traveling without a sedation nurse to verify that sedation booked the CT room, we were lost in a system that was going no where fast. What I found particularly troubling is that the sedation department can book CT scans but the CT department can't access the sedation department's scheduling system. I don't know about you, but this makes no sense to me.
This whole battle to get the CT scans done was really unnecessary. It also was very frustrating to have to experience this on top of an already stressful day. Also what if I did not have Linda and Ann with me. What would have happened to Mattie? I would have been schelpping him all over the hospital trying to figure this out! Eventually Catherine and I got Norma, another sedation nurse, to help us and she came along for all our scans and served as our back up sedation nurse. Once we had Norma, things fell into place.
At first, Mattie was intimidated to go onto the CT scan table. It was a new room, he did not have Jey running the scan either, so there were a host of new variables. But after several minutes Mattie managed to be coaxed to the table. Linda had a video going, and we were jumping around the scanning machine trying to talk and entertain him. He did very well with this scan, which seemed to take about 2o minutes or so. I got a kick out of the radiologist though, because she came to talk with me before the scans. She started talking with me about positions she would have to put Mattie's body in to get clear scans. She requested that Mattie's arms go up above his head and that he lie on his tummy. Neither were going to happen. Mattie will NEVER be able to lift his right arm above his head, even the best physical therapist wouldn't be able to accomplish this task. Why? Because many of the muscles to accomplish this task were removed in surgery. It is a very interesting experience when you have to educate a medical doctor about your child's limitations. I find very few doctors understand bone cancer and don't get me started on prostheses. I think many of them need a prostheses 101 lecture.
Once the CT scan was done, we had a few minutes to get to our next destination, to the Bone Scan, back at the nuclear medicine department. Now what you need to understand is Mattie was unable to eat or drink anything since midnight. So it is now noon, and Mattie is starving. Since we weren't sure whether Mattie was going to get sedation or not, we had to play it safe, and not allow him to eat or drink. If the CT scan issue wasn't enough, the bone scan experience was truly over the top! He had a scanning tech that we weren't familiar with, which was okay, but as he continued to work with Mattie I grew and more concerned about what he was doing. He did the bone scan once, and we thought he was done. Mattie even got off the table, and we were ready to head to lunch. But then he came back and said that he needed to scan another part of Mattie again. So Mattie wasn't happy about going back on the table, but he complied. However, this went on four or five times. I noticed he seemed to be very focused on Mattie's right arm. So focused that I began to get alarmed that something was wrong. He started asking us about Mattie's central line. He wanted to know if it could be removed, which of course it can't unless through surgery. Any way, then he started waving something over Mattie, and it was at that point that Ann and I both were losing it. Ann paced the hallway, called Bob, and Linda went to find a radiologist for us to talk to. I tell you Linda is a fantastic patient advocate! Anycase, I waited outside the scanning room to confront the radiologist. I practically jumped on him in the hallway, and started questioning him. He looked at me funny at first, but then I introduced myself as Mattie's mom, and he instantaneously perked up. He explained why they were doing multiple scans of the right arm. As he was talking I began to get even more concerned, because he used a word I don't like. He said the scan "lite" up by the right humerus. He tried to explain this away and then said why he is being cautious and taking multiple pictures using different methods to block out light glare to truly understand what is happening in the region. He thought I was complaining about the number of scans, which of course I wasn't, I was complaining because I wanted to understand what was going on. Needless to say, once the scan was FINALLY over, the doctor called Ann and I back out and showed us the scan results. What was lighting up was calicification by the prosthetic. I knew about this calcification back in December, so this wasn't news to me. However, I guess since he wasn't familiar with Mattie's case, he couldn't explain what he was seeing. So it was like we had to fill in the missing pieces for him. Wow! He was a lovely doctor, but he scared the living day lights out of me today. I think Ann and I were sitting on pins and needles.
While Mattie was undergoing the bone scan, he just had to have a donut to eat. He was getting shaky without having food in his system. Fortunately Ann brought Mattie's favorite donuts. So I snapped a picture of Mattie on the scanner eating a donut. It is a cute picture, but really what I want you to notice is look how close the scanner is to Mattie's legs? About an inch away! Well can you imagine Mattie's head under this scanner, with the machine only about two inches away from his face? Well Mattie had to sit like this for several minutes! This closeness to a machine would be difficult for most adults to contend with much less a six year old child. But Mattie was a trooper today. He dealt with all of it! Not only was I thoroughly proud of Mattie, but I have a six year old hero in my life, it is Mattie. He shows signs of bravery and courage that I don't even have within myself. Many times I realize I am asking him to do things and be exposed to toxic things, that I am not sure I could do to myself. So to me, he is a hero and is teaching all of us so many valuable lessons.
After the bone scan, we headed back to clinic. Ann ran around getting us lunch, while I got Mattie settled in clinic and admnistered his premedications in order to get an infusion of MTP-PE. It was like a marathon day today. We were in the hospital at 8:30am, and did not get home until after 6pm! I wasn't in the clinic long, when Dr. Toretsky and Dr. Synder got a hold of me and pulled me into a room to discuss Mattie's test results. Dr. Toretsky explained to me that the CT scan revealed that two of the lung lesions hadn't changed, but the other two looked slightly bigger by 1-2mm. He feels this is indicative of osteosarcoma, but then both doctors did tell me that the actual measurements of these lesions is not a precise science. So in theory the difference between January and today's measurement could be an error. So the next scan will give refer evidence to what is going on, but that it is positive there aren't additional lesions, and the current ones aren't growing significantly. They then told me that the bone scan revealed calcification of the right humerus. Dr. Toretsky and Dr. Synder weren't concerned by this, but said they would be following it with subsequent scans. Later in the day, Dr. Bob called me and told me that he isn't surprised that this area lite up in the scans. This is a natural reaction to major surgery, in which reactive bone activity or scar tissue in essence will form. This further indicates to me, that it is crucial who reads your scan results. You need to have professionals trained in your specialty area who can shed light on what is going on. I only wish Bob were with Ann and I today during this bone scan ordeal. The waiting, the multiple retaking of scans, and so forth were all so unsettling and nerve racking. Thank you Ann for sitting with me while getting the results from the doctors. I am not sure where Ann finds the inner strength to sit through all of this, especially since she lived through lung cancer with her brother, but I feel lucky to have someone like Ann in our life.Mattie spent the rest of the afternoon having a good time in clinic. Linda gave Mattie six prizes for his bravery today. He loved the gifts, and one gift was a voice recorder that he got a kick out of all afternoon. He recorded himself making all sorts of noise, and played it back for everyone. Mattie was productive and created some beautiful products. I took pictures of all of them for you to check out.
Left: A picture of Mattie and Jessie with his abstract acrylic painting on canvas. Mattie was very proud of this work.
Right: Mattie's wooden robot!
Left: Mattie painting a picture for Peter. It features Peter and Mattie together, along with our cat, Patches.
Right: A painting Mattie made for me!
As we head into friday, we are all breathing a lot easier. Or at least until the next scan! THANK YOU, THANK YOU for all the support! Peter and I appreciate every e-mail! I would like to share a message I received today from my friend Charlie. Charlie wrote, "Wednesday's blog was something I was very anxious to see. I could hardly wait to see if Mattie had made it to the circus and to find out what he thought about it. It was great to see him all excited and with all of his circus memorabilia. What a terrific way to spend the day. I know the circus is not what any of us adults remember but now they have to compete with special effects movies and video games so things naturally have to go to another level. It was very special of Brandon to get the nose for Mattie and emblematic of all the small and large acts of kindness we've seen all the way through Mattie's treatment.All our thoughts and prayers will be with Mattie, you and Pete today as you navigate the scans and the results. May our prayers reach the Lord's ears and have a positive response from on high. Amen."
I end the blog with a song that captures the sentiment of the day. I have the greatest American hero (to me!), and he is only 6!
http://www.youtube.com/watch?v=iBKqwdxUH8U&feature=related
1 comment:
Ok good news! What a relief. The day is over and the news is good. Praise be. How wonderful to have all these awesome people in your lives giving so much of themselves. And what a blessing it is that you are able to recognize this and feel the gratitude at a time when such a feeling could be hard to come by. Love the Greatest American Hero clip--that show was the bomb! They don't make 'em like that anymore. Can we just share the oldies but goodies with our kids and spare them the newere vamped up versions (like the version of the circus you saw)!?
Melissa S
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