Tonight's picture was taken in January of 2009. As you can see Mattie made a smiling flower out of a connecting toy that he received as a gift! However, what captures my attention was his wonderful smile and cute head. Mattie was not intimidated in the least by being bald. He did not seem to mind that he had no hair and did not care what others thought about this notion either. You really had to admire his confidence regarding this and though I tried to cover his head in public to protect him from the cold and stares, Mattie usually tore his hat right off his head.
Quote of the day: Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~ Richard Puz
This morning I was invited to attend a Grand Rounds Lecture at the Georgetown University Hospital entitled, "Compassionate Honesty: Integrating Hopes, Emotions, and Duties when Confronting Serious Illness." The presenter was Dr. Chris Feudtner who is an attending physician and research director at the Children's Hospital of Philadelphia. Given the time of year, this is a challenging topic for me to sit through and then being in a room of doctors has a way of setting me off emotionally!
When I entered the auditorium this morning, I got the opportunity to see many familiar faces who either cared for Mattie or helped to support us. I first chatted with Catherine, our case manager, I sat next to Debbi, our sedation nurse angel, and saw Denise, Mattie's social worker. I saw many other Georgetown folks we knew as well, which is ironic. We only lived on campus for 14 months, but in so many ways it seemed like YEARS! It was such an intense part of our lives.
Dr. Feudtner was a powerful and passionate speaker! What caught my attention was his empathy and his ability to emote. Which is rather unusual for a medical doctor. He first shared stories about his patients and really directed his opening comments to the medical students in the first couple of rows. He wanted to impress upon them the importance of three things when working with patients and their families: emoting, thinking and relating! He feels you need to use all three skills to effectively apply medicine! What a concept! I couldn't agree more. If you do not listen and relate to your patient, then you can do all the thinking in the world, you will be missing a good 90% of what is going on with the body in front of you! His stories illustrated just this and the key word was to be authentic with one's patients.
I think it is hard to be authentic with patients if medical students are not trained in the art of communication, are encouraged to dialogue with patients, and are given the skills to manage difficult emotional scenarios. This is something I discussed with Dr. Feudtner after the presentation was over, especially since upon my observation I could see that the medical students were visibly uncomfortable with this whole dialogue of emotional expectations of their role.
Dr. Feudtner also highlighted some of his research with the audience. Parents of seriously ill children make difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. Such a process of transitioning from one set of goals to another is called regoaling. The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect (in essence the good and the bad in their situation) and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals.
This whole discussion of regoaling and hopeful patterns are incredibly timed with tonight's September 5, 2009 posting below. As you read back in time, you will see how Peter and I had a mind set change. Just like the one Feudtner's research is referring to! We went from being parents who were dead set on treating Mattie and finding a cure, and then we had to come to the realization that this wasn't going to happen, and instead we had to set another goal and establish new hopes! In fact, throughout Mattie's treatment our HOPES constantly changed! They changed from finding a cure, to managing the disease process, to eventually managing pain and finding a way for Mattie to die a humane death. Therefore I gather we would be considered by Feudtner to be "high hope parents" since we appeared to be able to transition from one set of goals (helping Mattie recover for example) to another (keeping him comfortable).
Attending Grand Rounds was informative on many levels but given the topic, how it was discussed, and the nature of the audience, some how many things were triggered for me today. After the presentation was over I literally was in a state. I cried for about two hours on and off and felt like Alice in Wonderland who could have been washed away in a sea of tears! There was something about today that reminded me on a very real level once again that I was a mom, that Mattie did exist in our lives, and our reality was beyond overwhelming.
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Blog Posting from September 5, 2009:
Today was another challenging day, because it became clear to us that Mattie's body is shutting down, the cancer is taking over, and we most likely will not have Mattie in our lives for much longer. This was a realization that I wasn't prepared for today. In fact, at first this hit me like a ton of bricks, and there were moments this morning where I just sat, felt very depressed and cried.
Peter had the chance to talk to Dr. Shad, the director of the Pediatric Lombardi Center, and she told Peter that there is no certainty as to what will happen next in Mattie's condition. We all know his body continues to accumulate fluid in his stomach cavity, but what is causing this swelling? Well today we concluded that the fluid build up is due to disease progression and not because there is an imbalance in albumin (protein) in the body. Clearly we could do something about a protein imbalance, but there is nothing we can do about disease progression. Though we drained 1.5 liters of fluid from Mattie yesterday, we had to do another paracentesis tonight as well. Today's paracentesis removed 1.25 liters. This procedure was performed in Mattie's room and a catheter was also inserted in his abdomen in case pressure and fluid build up and need to be drained from his stomach tonight. On Sunday, Mattie is scheduled to have a drainage tube inserted into his stomach cavity, so that the fluid can naturally drain from the tube into a bag, without having to puncture his cavity with a needle each time. Despite taking out 1.25 liters, his stomach region still looks incredibly swollen. This worries me.
One thing is VERY clear, Mattie is no longer the same boy we brought to the hospital even a couple of days ago. Mattie is lifeless, sleeps most of the day, and when he is not sleeping, he is crying and screaming in pain. He NO LONGER plays, talks, and watches videos. He is clearly on the verge of joining another world, and we are unfortunately watching this and are unable to do a darn things about it. I had the opportunity to bump into Debbi (our sedation nurse angel) while I was walking around outside the hospital. I confronted Debbi today because I noticed yesterday after the paracentesis, she did not seem as elated as I was that 1.5 liters or fluid were removed from Mattie. I made a mental note of this, and I reflected on it for the rest of the night. Why did she react this way? Because Debbi is a major advocate of ours, if something was a good thing, she would have been celebrating with us, but she wasn't. I told Debbi that I know Mattie's body is shutting down and we talked about how Mattie is indeed dying, and is losing ground VERY quickly. In fact, we estimate that Mattie will be with us for perhaps a couple of weeks only.
Though Debbi doesn't work on Saturdays, she came by to visit with Mattie and also gave him her desk clock which has a mechanical swimming fish in it. Peter replaced the battery in Debbi's clock and Mattie is totally intrigued by the floating sea turtle that serves as the second hand on the clock! Thanks Debbi! After I spoke with Debbi, I realized my mission is not done for Mattie. So I pulled it together, because whatever energy I would be putting into being depressed and hysterical, I need to devote to managing Mattie's pain and advocating for him so that we are NOT prolonging death. This is definitely a new philosophy for us, because Peter and I in the past have consented to ALL sorts of treatment, blood transfusions, and testing. But now we have to think through every decision, and ask why we are electing to do something? Are we doing it for our own needs or are we doing things that are in Mattie's best interest, which means no invasive testing or treatments that will prolong his agony. I can assure you it is almost impossible to accept that we are now making decisions to end Mattie's life peacefully and quickly. In fact, tomorrow we have been asked to draft up some advanced directives for Mattie's care. Such things as do we give the hospital permission to use dialysis and breathing machines, to resuscitate Mattie if his breathing or heartbeat stops, and the administration of a tube feeding. Though we know what we have to do, it is hard to admit that we REFUSE all these options.
I am sure some of our readers are processing what is going on and you are asking yourself, why on earth do we want to spend our last remaining days with Mattie in the hospital? Well of course from our adult perspective dying in familiar surroundings seems peaceful, and the right thing to do! However, here is the thing. Mattie WANTS to be in the PICU. This is his decision. Peter and I took Mattie home on Wednesday, despite the fact that he did not want to leave the hospital. As you know on Thursday we had to readmit Mattie because of intense pain. When I did this, Mattie said, "I told you I did not want to go home. So we are not leaving the hospital until I am ready." Peter and I must respect Mattie's desire right now, despite our own needs or picture of what saying good-bye to him looks like. Of course being in the hospital is no picnic by any stretch of the imagination (living in any institution limits your freedoms), but I must remind you that we have lived in the PICU for 11 months, and in a way it has become a place we are familiar with and consider our medical home. None the less, it is VERY challenging living in a two by four of a room, and having to share a bathroom with another family during this highly stressful time.
Ann was following Mattie's progress today, and came by to visit me and support me through this emotionally challenging day. I appreciated her presence and fired so many thoughts at her, but she never skipped a beat. One of the many things I struggle with is what to do with Mattie's body, bury him or cremate him. Certainly neither are a pleasant thought, and I grew up in a traditional Catholic family, where wakes and burials were the norm. Yet, a part of me can't imagine burying Mattie. I guess for several reasons. The first is I want him physically closer to me, and second, if I bury him in a cemetery, I will feel very guilty if I do not visit him every day. How to come to peace with this decision is not an easy one for me. I also told Ann that I am particularly saddened by the fact that Peter, Mattie, and I never had some family time after treatment to just enjoy each other's company. We never got to fulfill a Make a Wish Foundation wish for Mattie either. I plan on letting the Lombardi Clinic social workers know that waiting to get a wish granted until treatment is over is a BAD idea, because with cancer you never know what tomorrow will hold. In addition, Mattie's disease progression has hit him hard. I am not sure what I thought preparing for death was going to look like, but I can tell you it is NOT a magical moment, where you intimately talk about life and your love for each other. I suppose this can happen with certain diseases, but with Mattie, he spends most of his time out of it with pain medications, and therefore Peter and I sit in silence in Mattie's room for most of our days. One or two days of this is hard, but day in and day out of this is heart breaking and unnatural. It kills the human spirit.
Later in the afternoon, my parents came by to visit with us. My mom was in the hallway with me observing the paracentesis procedure being performed on Mattie. My parents also brought me some lotions and other things to help perk me up. Though my mom admits, there is no possible gift right now that will bring such happiness. It just doesn't exist, and she is correct! My mom can't get over the dramatic decline in Mattie in just three weeks. She has seen it unfold and it is hard to believe that three weeks ago, Mattie could leave the house, play, and talk with us.
Tonight, Mattie woke up from his sedation from the paracentesis, and wanted to watch one of our favorite dog shows, "It is me of the dog." He can bearly keep his eyes open, and his speech is slurred, but he attempted to watch. As the evening progresses he continues to be in pain and anxious. But really is in and out of consciousness.
Tricia was Mattie's nurse today, and she worked extremely hard to support Mattie, as well as us. Tonight, Sarah Marshall is Mattie's nurse. Sarah Marshall was talking to Mattie and she told Mattie a story about how her brothers would sometimes pick on her when she was growing up. Mattie asked Sarah Marshall why they would do this to her, and that teasing her wasn't nice. Sarah Marshall agreed, and then Mattie took the conversation to the next level. He told us he can't walk or do anything for himself, so what would happen if someone picked on him!? We told him that wouldn't happen, and Sarah Marshall told him that this person would have to go through her first! He seemed happy with that response.
Please keep us in your thoughts and prayers. This is the toughest thing we have been asked to do this year, or perhaps the toughest thing in our lifetime. I appreciate all your e-mails of support, they truly make a big difference to my daily existence.
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