Thanks Charlie for the quote of the day. Charlie wrote, "It seems to me that you and Pete are past the need for patience and now are in the endurance stage. Hold on for this last surge before you finally reach the top and get to start down..." Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.
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 boundardies 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 everytime 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 rescan 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?
So here is the deal. Mattie doesn't know about his lung lesions. We do not want to tell him right now, especially since he needs to be rescanned in three weeks. We will have a better idea of what we are dealing with then, and it doesn't pay to further stress him out when he is already very anxious and upset. Therefore, though I am posting this information on the blog, I expect our readers to respect our desire NOT to tell Mattie and NOT to talk about lung lesions in front of him.
Tonight, I feel weepy and just plain sad. I feel like my son's childhood has been striped away, I feel like I am losing out on the pleasure of being a parent and worse I may lose out on the possibility of having a child to raise in the future. This has caused me great sadness today. However, right after the news was told to me, I could hear Mattie screaming for me. So I had to quickly pull it together and I jumped right back into it with Mattie, as if nothing was wrong. Not an easy task in any sense of the imagination. I know the hospital staff offered that I could go to the chapel today after I heard the news, but my honest answer is what on earth for? Not that I am mad at God. Because who am I to question his decisions, but I don't have the spiritual energy to pray or to even focus on praying. Thank goodness I have the rest of you in my life who are helping me with this.
Mattie had a pretty good afternoon. Mattie even attended a science show in the PICU hallway. We learned how a boiled egg (without the shell) can be sucked into a glass bottle today and even how to microwave soap. Actually it was a great diversion, that helped me hold it together. Later in the day, we met up with Brandon (Mattie's big buddy) and his mom, Toni. Brandon and Toni have become our support system at the hospital. But Brandon's actual last day of chemo was today. He is now tumor free and headed home this weekend. This too is a loss on some level for us. Brandon is very fond of Mattie and he gave Mattie his Wall-E cardboard IV pole creation. Mattie always admired it, and now Mattie will always have a part of Brandon with him. That is very meaningful. Brandon even came to Mattie's room today to build with legos. We are so happy that Brandon is cured and headed home! Tonight as I type this, Mattie had a visit from his Uncle Chris (Peter's brother, who lives in Boston). Mattie seems to have been open to Brandon and Chris visiting this evening, and hope this continues to be a trend, because the last two + weeks have been very isolating.
In between dealing with all of this, I have also been trying to learn more about Medical PTSD or medical traumatic stress. I truly feel this is what Mattie is contending with. "Pediatric medical traumatic stress refers to a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. These responses may include symptoms of arousal, re-experiencing, and/or avoidance. They may vary in intensity, are related to the subjective experience of the event, and can become disruptive to functioning." If you are interested in learning more about medical trauma, you can visit this website: http://www.nctsn.org/nccts/nav.do?pid=typ_mt
We want to thank the Fortune family for a wonderful lunch. Mattie absolutely LOVED the Scooby Doo books. We read five of them already today. I also want to thank the Heddesheimer family for a great dinner. You all took care of us so well today. It is appreciated, and it took every ounce of energy I had to just eat something. Thanks Mommy and Daddy for working out the logistics for Mattie's new medical mattress delivery to our home today (the mattress is to prevent bed sores) and for bringing Mattie his CHEESE requests. Thanks Barbara and Don (Mattie's paternal grandparents) for the Scooby Doo puzzle and the Knex. Mattie built the knex car right away, and he used both of his hands quite well. Mattie also received a lovely package from Meghan (a medical resident) who has a friend who is a Top Gun in the Navy. That was a very thoughtful gift!
As we head into the night, I have no idea what Mattie has in store for us, but one thing I do know is my heart is heavy, my head is heavy, and I wonder what on earth we or Mattie have done to deserve this horrible disease. I realize there is no answer to this statement, but I long for our previous life and our normal days. All I can say is savor your days. Enjoy the tasks, enjoy the running around, enjoy the schedules and the hectic moments. All of these things are signs of a healthy and active life. I can appreciate that more now than ever before.
3 comments:
I can not tell you how much my heart is heavy for you right now. I read you blog everynight and since I have walked and am walking in your shoes, I really feel for you and know exactly how you feel.
That being said, I want to tell you a few things I have learned about CT scans. Emma had mets at diagnosis in both lungs. We removed them with surgery and until recently she was 9months cancer free. In those 9 months small things showed up on the CT scans that would disappear by the next scan. Lots of things other than just osteo can show up as small blimps on Ct scans. Two weeks ago, however, a 2 cm lesion showed up on a scan; we were told that the osteo was back and Emma had relapsed. There just wasn't a good explanation for a 2 cm sized blip other than osteo. We went for another thorocotomy (lung surgery) with very heavy hearts. This one took twice as long as the previous surgeries, and I was really worried that they were finding allkinds of things. It turned out that the opposite was true. The surgeon couldn't find any osteo mets at all. Although there is a small possibility that he missed it somehow, it is unlikely. He even called in another surgeon to look, no dice and that met was so large it should have been easy to grab. The more likely event is that the lung met was never a lung met at all but a spot of infection which can look like a met on CT scans, so Emma has not relapsed after all. We are currently sitting in the hospital recovering from the surgery (lung surgeries suck). What I'm trying to say, I guess, is that you won't really know what is on that CT scan until they take the tumors out. They might disappear with the chemo making this completely uneeded. I have an osteo friend whose daughter had more than 70 tumor "spots" in her intiial lung Ct scans and only had two or three removed surgically-the rest all shrunk to nothing. I totally understand how upset you are now and you are right to feel that way, but please know that CT scans and lung mets are tricky things and stuff isn't always what it appears to be.
I also wanted to give you a name that I know about from the ACOR osteo listserve: Dr. Pete Anderson at MD Anderson (Texas). Our oncologist here in Seattle has repeatedly said that if Emma relapses, there will be nothing he can do but cut the tumors out; there is no good second line defense for relapsed osteo. I know though that Dr. Anderson treats lots of people in that situation with lots of different things. The difference is that Dr. Hawkins, our Dr., is a conservative Dr. and only uses treatments that are FDA approved or are in formal trials. He doesn't do "off label" stuff or try things under compassionate use. Dr. Anderson does so he can offer a lot more options. I don't think that I've ever heard of anyone saying that he wasn't willing to at least try something with their child even in very tough situations. Now, I haven't dealt with him personally, but this is what I have learned from the list. If Emma does have a confirmed relapse, I'm going to go to MD Anderson for a second opinion. I don't know how conservative your team is and what sort of things they are willing to try.
I am telling y ou this because it may be that there are other options to at least try if the Ifos/Etop doesn't work for Mattie.
I totally understand about the chapel thing too. When our pastor asks me how I'm doing spiritually I just say that I'm too busy dealing with the situation practically to have the energy to approach it spiritually and that's the trut.
If you ever want to know more about Emma or communicate directly with me, go to caringbridge.org and type emmakoertzen when propmpted. You can read about us and leave a message if you like.
Hang in there,
Lauren
I am so sorry to hear that Mattie has mets. When my son was diagnosed with osteo back in October 2007 he had 6 mets; 1 in the left lung and 5 in the right lung. After his limb-salvage, and only 75% necrosis, the mets multiplied. He had the surgeries to remove them and they found still the 1 in the left lung, but 9 in the right; so they added the ifos and etop to his treatment. He goes for more scans Dec. 30; but so far has been NED since October 13, 2008. 2 of the scans they did after the lung surgeries showed 'suspicious' spots, and they went away. Just keep fighting!! This is a battle that is so hard, there are just no words to describe it. I have been there (actually am still there) and I am praying for you guys. Do your best, and don't let anyone tell you how to do it. Mattie is your son, and you have to do what YOU think is best for him. People who haven't been in our shoes bave no idea what this is like. Good luck, and just remember that we are praying for you.
Kristi Koury
www.caringbridge.org/visit/davidkoury
My husband and I prayed so hard that the CT scan would show nothing - and I can only imagine how disheartening the results were to you. We will intensify our prayers for a miracle. Hopefully a few years down the road when Mattie is cancer free, these months will be only a very bad memory and youi can watch Mattie dance at his wedding. I have lots of my friends praying also - for ALL of you.
Blessings, Bunny Rodak
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