Saturday, September 5, 2009

Saturday, September 5, 2009

Tonight's Mattie Brown creation features paint that he placed on a spinning wheel in the Childlife playroom.


Quote of the day: "Life is eternal, and love is immortal, and death is only a horizon; and a horizon is nothing save the limit of our sight." ~ Rossiter Worthington Raymond



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.

Thank you Tamra for coming by this morning and dropping us off tea, coffee, and breakfast. You are just incredibly thoughtful and supportive of us, something we shall never forget.

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.

We want to thank the Pisano and Cruz families for the wonderful lunches you provided us! We are very grateful for your support!

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.

We would like to thank the Brandt family for a wonderful dinner. We value their support. 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.

I end tonight with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I am so saddened by what is happening with Mattie now. I am so grateful that you are there to be his advocate since without your determined efforts I know he would be suffering much more than he is. As usual, your parental intuition has shown itself to be accurate and it would be so much better if the doctors would recognize parents' ability to see when things are very wrong. I know that having the end of Mattie's battle arrive with him in the hospital is not what you envisioned for him but it seems as though Mattie has his own opinion on the subject (as he usually does). He as always exhibits wisdom far beyond his years and knows that "things" are not important, but what is, is to have loving living beings around you. I hope there is a way to grant Mattie's wishes with regards to his pets; I think they would bring him much comfort. So often our rules make things harder and more painful when they should be seeking a way to do just the opposite. I and many others are offering prayers frequently now and we hope that somehow Mattie's pain can be ameliorated. I offer this from Mitch Albom's book Tuesdays with Morrie. "Love is how you stay alive, even after you are gone." Mattie has touched so many of us in so many significant ways; he will never be forgotten."


The second message is from my friend, Carrie. Carrie wrote, "Vicki, my tears are yours! Sorry for your hell on earth. Please give Mattie a cuddle and foot rub for me. I am glad you and Peter are with him and there to minister to him in his final days on earth. He is so blessed to have you for his mommy (always and forever) and Peter as his daddy! I know Mattie knows and feels this as evidenced by his only things needed are you and Peter (love, compassion). What more could one ask for but love; that is perfect on the one hand."



The third message is from a colleague of Peter's. Kelley wrote, "With a heavy heart, I've followed your blog closely since I learned of Mattie's devastating illness back in April. Since then, I've had the privilege of going back and reading most of your posts since August of last year. Thank you for giving us a glimpse into your lives, your struggle, and especially the love and protection we all aspire to provide for our children. I was going back again last night, going through the timeline, and I was struck by the photos. Obviously, I've seen photos every day since April, but for some reason last night, they had a more beautiful meaning. I saw something I hadn't noticed before. Yes, you've chronicled each day of your fight, all of his days/nights in the hospital with the amazing staff, visits from friends/family, each accomplishment, each hurdle. It's all painstakingly, yet beautifully documented. I was struck because amidst this hell you are going through, there are COUNTLESS happy smiles, art projects, creative games, Lego towers, loving glances, embraces, surprised faces, laughing eyes, adoration, unconditional love, TRUST, so much depth that I can't even put it into words. I see these things, on the outside, looking in and I find myself a little heartbroken because I have taken some of that for granted in my own life. Yet you have captured those things in some of the deepest and darkest moments. Mattie is beyond blessed to have you as parents who can create hope and joy, if only for a moment, amidst horrendous pain and grief. Your love is beyond measure and the boundaries of death. Thank you for being an example to all of us of the love and sacrifice we are to show not only our children, but those in need. Thank you for your honesty, vulnerability and demonstration of how to advocate for those that cannot do so themselves. We stand in awe of you, and are honored to know you."