Tonight's picture was taken in December of 2008. I decided to post a photo from that time of year, to set the stage for the rest of tonight's blog. Though Mattie was smiling for this photo, there was not a lot of happiness in our lives. By that point, Mattie had all of his limb salvaging surgeries and the surgeries left him wheelchair bound. That was frustrating to Mattie. In addition, Mattie lived with constant pain. Of course back then, the doctors (for the most part) did not believe he truly was in pain. Now in retrospect, we know Mattie was in REAL pain, not only from surgeries, but because cancer was taking over his body.
Quote of the day: There is no one way to recover and heal from any trauma. Each survivor chooses their own path or stumbles across it. ~ Laurie Matthew
As I mentioned in last night's blog, we decided to participate in a docuseries on childhood cancer. The interview will take place in October. I asked the producer of the series what kind of things she would like me to provide her in order to help with our story. She asked for photos and videos of Mattie. Both pre-cancer and after Mattie was diagnosed. Rarely, or maybe EVER since Mattie died, have I looked at videos. Videos can be even more upsetting than photos. Frankly, I don't even remember taking videos of Mattie in the hospital, I only recall photos. But I was wrong! I have been culling through my electronic files and found several videos. Naturally back in 2008, this video DID NOT go on the blog. I did not want to upset our hundreds of readers. Back then, I only described our night by using words. I think pairing the actual sound of Mattie to the commentary below (posting from December 5, 2008), may help you understand what we were up against. I have to warn you before listening to this video, be prepared it could be perceived as upsetting.
I wish I could say that the video above was an isolated incident. It was NOT. Nights in the hospitals were even worse than the day hours. Everything was magnified at night and Mattie rarely ever slept. Another side effect of cancer treatment. He was up and agitated 24/7. Yet if he was up, so were we. Peter and I learned to work on little to no sleep for over a year. In addition to no sleep, we were witnessing Mattie in intense pain and we couldn't control the pain or the situation. Worse, we had residents and doctors judging us, observing us, and providing behavioral advice on how we should manage Mattie's moods and tirades.
How I did not smack some of these people back then is beyond me! Because when I read the posting below from 2008, I am not sure I could be as civil today. Maybe because I have a better understanding for the cast of characters now and I know that medical residents think they are part therapist (despite NOT being qualified) in the middle of the night. At the end of the day, I knew it then and I know it now..... no one knows a child better than his/her parents. In 2008, I was not in the position to tell doctors off. I had to work within the dysfunctional system, and at the same time advocate for Mattie so that his quality of life wasn't significantly compromised.
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Blog Posting from December 5, 2008:
There is so much I want to say tonight and yet so many emotions all at the same time which makes it complicated to know where to start. But in a nutshell, I feel sad, depressed, and pretty much angry with our current situation! Just when you think a night can't get any worse, it does. Thursday night was horrific. Mattie got to sleep at around midnight, and then was up at 2am. He woke up agitated and started crying. For 45 minutes Peter and I tried to comfort him, hold him, and listen to him. After that point we realized we were getting no where. So based on a conversation I had with a psychiatrist that afternoon regarding Mattie's behavior, I decided to adopt a different technique last night. After the 45 minutes of coddling, Peter and I then moved into a more firm approach. An approach you would probably take with a toddler who is refusing to listen to you, or to use his/her words. You know, the silent treatment, where you are present in the room, but are giving the child no attention until he/she calms down and uses words. Well Peter and I held firm for 90, YES THAT IS RIGHT, 90 minutes of screaming and yelling. We would periodically check in with Mattie and tell him that he needed to calm down, that he would need to tell us what was bothering him, and then we would come to his side and talk with him. But that never happened. Instead, this 90 minute ordeal further set him over the edge. At which point, the resident on call came in to observe what was going on. She told us to comply with whatever Mattie was asking for, and not to provoke him or use verbals. So we did this for 30 minutes while being observed. Let me tell you that is a humbling experience at 4 something in the morning! Any case, after 30 minutes, Mattie never calmed down and we had to give him Ativan. By this point, my emotions were frayed and physically I felt worn out. The resident explained that we only want to use Ativan now periodically, and instead encourage him to use his oral anti-anxiety medication. Which is why they held off of giving him Ativan right away. Turns out the resident started talking to me about the 90 minute behavioral technique I used. I explained to her that it wouldn't have been something I would have done at the moment, but this was something the psychiatrist recommended. Setting boundaries and limitations and "being the parent." God knows why I listen to this stuff. I have to trust my gut, and know that I really do know Mattie better than the rest of these folks.
This morning, Mattie was headed to his CT scan. Debbi (our sedation nurse and angel) came in to help me with Mattie. She started the sedation process in Mattie's room, and then we wheeled him down to the CT scan room, where Mattie met up with Jey (his "big brother"). Dr. Toretsky and Linda also met us down in the room. The irony is it takes longer to set Mattie up for the scan, than the scan itself. The scan only took about 10 minutes! After the scan was over, Debbi took Mattie upstairs to his room, and Linda bought me a hot chocolate. Thanks Linda! I told Linda about some of my concerns about separating from Mattie right now. Our doctors are recommending that I take some time away from the hospital. I think that is wonderful advice in theory, but not realistic for a child who is already traumatized and finds comfort in having both of his parents around in the hospital. All advice is good in theory, but I truly believe until you have had a child sick with a life threatening illness and have had to walk in my shoes, you shouldn't judge me.
I went back upstairs to Mattie's room and he was coming out of being sedated which is always a painful process. Mattie usually comes out of the process very agitated and crying. My head is filled with the sounds of crying. In fact, it is my background music most days. Debbi could hear this crying down the hallway, so she came back in and gave Mattie more of a sedative to calm him down. That indeed helped, because he slept for a good part of the day. The sleeping during the day isn't great I know, because I will pay for it tonight, but Mattie is so sleep deprived that I take whatever sleep he can get. When Debbi came in she mentioned to me that Dr. Toretsky wanted Peter to be present when he gave us the results of the CT today. Just hearing that was an instant red flag in my book. I felt that perhaps he already knew the results of the scan and it wasn't good and he wanted to break it to both of us together. So for the rest of the day, I was fixated about this scan and the results. So much so, that I e-mailed Peter several times. Peter couldn't get off of work, so we agreed I would hear the results alone, and then call him.
So this afternoon, Dr. Toretsky pulls me out of Mattie's room. But instead of telling me the results, he calls the whole team into the meeting. So to me that was the kiss of death! But mind you I had already prepared myself for bad news when I heard that he wanted Peter present at the meeting. I am a quick study of people and situations, which is a gift and a curse. If you recall I am the one who wanted Mattie to be scanned. Why? Because, I kept hearing from multiple people that the time frame between surgeries and the last time Mattie had chemo was significant. I couldn't shake that comment every time I heard it. So I felt for peace of mind, I had to do the scan. The scan of the lungs, because the lungs are the typical site for metastasis with osteosarcoma. The bottom line is it appears that Mattie has four lesions in his lungs. Two on the right side and two on the left side of his lungs. They are about 3mm in diameter. So right now they are small, and couldn't be removed through surgery. However, the doctors want to re-scan Mattie three weeks from now to see if there are any changes in these lesions. If they get smaller, that would be a blessing and mean that the new chemo drugs (I/E) are working. If the lesions get bigger, then we have an even more significant problem on our hands because it means the new drugs aren't working. Well I bet you can imagine how I felt about hearing this news. I was sobbing and very upset. In fact, when I am in shock I start to shiver and feel like I am going to throw up. Some people cry hysterically, I on the other hand start physically shutting down. Part of me can't believe this is happening. Wasn't four bone tumors enough? How much can one family be tested? So many things were running through my head, but the main one was how on earth is Mattie going to deal with this?
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