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."

Friday, September 4, 2009

Friday, September 4, 2009

Tonight's Mattie creation features a Lego carousel that he made with Peter. This was a labor of love, since this Lego set is very delicate and falls apart easily.

Quote of the day: "It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." ~ Julius Caesar

I have so MUCH to report today and yet so many emotions going around in my head that it is hard to know where to start. I will begin by sharing our harrowing Thursday night. This was a night that Peter and I will always remember!

As our readers know, Mattie was in intense pain on Thursday during the day, which is one of the reasons he was readmitted to the PICU. However, by Thursday night, Mattie's abdomen was becoming VERY distended. So much so that it looked like he was going to burst open. By around 2am, Mattie looked about nine months pregnant. The whole situation was down right frightening, Mattie was in excruciating pain, and the worst part about this is we weren't getting sufficient answers to our questions. At one point last night, we were dealing with over four different medical residents in our room, all from different specialities. Each professional had their own opinion about what was happening, but guess what?! No two opinions were the same. We landed up becoming highly anxious over all of this, and we were very uncertain how to help Mattie. The surgical resident felt that Mattie needed follow up xrays last night. So literally at 2am, a portable xray came up to take the first xray, and then about an hour later came back for an additional xray. However, I had a major problem with this x-ray tech. This tech had neither expertise working with children nor compassion to help a child in pain. The tech wanted to place Mattie's body in a very uncomfortable position just to take the x-ray. Mattie was hysterical, anxious, and in so much pain that he bearly could move his body. Yet the tech kept insisting and becoming impatient with Mattie that he wasn't complying with his directions. Peter was helping the tech, and I went into the room next door, because I needed a break from the screaming and crying. However, when Mattie yelled out, "Mommy," I ran back in the room, and chewed out the tech. I told him he had to learn to think outside the box. If he is working with a patient who is unable to move his/her body to a certain position, then it was his job to find another way to get the job done. So I showed him how it could be done differently. I was so angry, I wanted to throttle this man.

The situation only got worse. There were two groups of thinking for why Mattie's abdomen was dramatically increasing in size. One theory was that Mattie's pleural cavity was filled with air, and the other theory was the cavity was filled with fluid. Naturally air and fluid are two different things, and should be treated accordingly, not the same way. Our nurses and advocates were concerned about Mattie's distention too, and a few of them recommended the placement of an NG feeding tube last night to help tap and pull out the air from Mattie's abdomen. The problem with this is two fold. Mattie would have to sit still for the placement of this tube without sedation. This may work for a typical child, though I imagine no one likes the gagging feeling this tube produces while it is being inserted, but for Mattie having such a tube placement would only heighten his anxiety. In addition, as Peter astutely said, we are NOT sure that Mattie's cavity is filled with air, and if it wasn't, then we would be subjecting Mattie to an unnecessary painful procedure. So Peter did not consent to an NG tube placement. I was actually on the fence about this, I just wanted the stomach region to return to its normal size. But Peter did a great job, and he actually made the right choice in the end.

So basically after several theoretical arguments with residents, watching them manipulate and touch Mattie's abdomen (which caused INTENSE pain and anxiety), and two unpleasant xrays, we were all wiped out, with no real answers or a plan of attack for this growing problem. By 7am today, I literally couldn't take it anymore. Peter was up most of the night with Mattie, helping him manage Mattie's pain. I was listening to Mattie's pain all night, but physically couldn't move to help him. I was too wiped out from my previous all nighter the night before. Peter and Mattie's wonderful HEM/ONC nurse, Janelle, just couldn't give Mattie enough pain medication early this morning to balance and mitigate the pain. Mattie just kept on screaming and crying. It was completely INHUMANE! I had observed enough to know that something had to be resolved ASAP and we needed answers. Until we were able to get answers the doctors raised the concentration of Mattie's Dilaudid pain dosage, which we hoped would help with the pain, but Peter and I were both concerned that the cause of the pain wasn't being identified. We were only throwing medications at the problem to cover up the pain. So I wasn't happy and grew more and more concerned.

The irony is, I wonder if the doctors were as concerned as we were. They certainly did not act like it, but Peter and I just kept pressing the issue! I told Janelle, that the on call attending doctor, Dr. Abu-Ghosh (a lovely individual who was Cody's doctor, many of you may recall the story of Cody, a young boy Mattie's age who died from his four year battle with cancer this year) had 30 minutes to get herself here to answer our questions, otherwise I was going around her. I needed an attending physician to help us, and had more than my fill of residents by 7am. Janelle worked hard to pass along our messages, and in the mean time, I called Dr. Snyder, Mattie's oncologist. I basically started off the conversation with the line, "I need your help." She could hear Mattie writhing in pain in the background and within 30 minutes, ordered a CT scan and ultrasound for Mattie with sedation. I also paged Debbi, our sedation nurse angel, because I felt we needed a powerful advocate. Debbi responded to my page within minutes and came to visit and assured me that in an hour Mattie would be sedated and scanned. Thank God! I had asked for a CT scan on Thursday, but the doctors felt that Mattie did not need one. Here is the irony of all of this, so far when Peter and I have said that something is wrong with Mattie and he needs further assessment, we are usually 100% correct.

Debbi helped us obtain Versed for Mattie today. Mattie was SO anxious this morning, we could bearly touch or talk with him. Versed helped tremendously and we were able to take Mattie down to the CT scanner. Jey, our favorite CT tech, and Mattie's "big brother" met us in the CT room. He spoke with Mattie and told Mattie that he did not have to get off the stretcher mattress, instead Jey transferred Mattie onto the CT scanner, mattress and all. This was actually a very thoughtful and compassionate gesture, because any additional movements for Mattie were painful.

The CT scan identified the problem immediately. Mattie's pleural cavity was completely filled with fluid, NOT air! Thank goodness we did not do the NG feeding tube last night, because that would NOT have addressed the problem. We met with a radiologist today, who highly recommended a Paracentesis, which is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis. I liked this radiologist's style, because she performed this procedure immediately under the guidance of an ultrasound. The radiologist pulled out 1.5 liters of fluid from Mattie's abdomen. That is a HUGE amount of fluid, and it is no wonder he was in severe pain. The radiologist told me that when the pleural cavity is under pressure and that level of expansion, that this can cause off the charts pain.

I was relieved that there was an explanation for the pain, because I was also being prepared for the option that this issue wasn't correctable and this was perhaps just disease progression, making it virtually impossible to alleviate Mattie's pain. Hearing this news was devastating alone, and when I heard that the CT scan showed fluid build up, I felt as if I won the lottery because in my mind this was correctable. I also had the pollyanna attitude that once the fluid was drained, Mattie would feel better for a while, and we would be able to be discharged within a day or so. All very wishful thinking.

While waiting for the CT to be completed, I spoke with Jey in the hallway. He told me a very touching story about how challenging a time it was when he lost his father to cancer. He said he too thought he couldn't go on, and yet if he did not go on, he wouldn't of had the wonderful opportunity to meet and help people like Mattie and my family. I was in a state this morning, and yet Jey's comment remained with me throughout the day.

My parents came to visit Mattie this morning and then they went out to lunch with Mattie's director of school counseling, Susan. I appreciate all of you who are supporting my parents as well! Mattie really doesn't like anybody in his room other than Peter and myself, so my parents only come for very, very short visits.

I had the opportunity to see Ann. Ann and Alison worked very hard to make sure we were supported today, and Alison ordered us lunch and Ann delivered it to us. Alison also watched Ann's children, so Ann could come and spend some time with me. I am not the best of company, but Ann got me out of the room, into the fresh air, and eating. I appreciate Ann and Alison's efforts, because as the day wore on, it became even more depressing. Ann was up with me last night too as Peter and I were fighting with numerous residents and trying to get down to the bottom of Mattie's issue. I feel blessed to have her support, during a time when I really can't open up and allow others into my life. Ann brought Mattie some gifts today, and one of his favorite ones was an alligator tooth from Florida.

After Ann's visit, Dr. Abu-Ghosh came by to talk with us. She let me know that Mattie's albumin levels were still low and that he would still need to receive lasix to flush out excess fluids from Mattie's body. Dr. Abu-Ghosh explained that we wouldn't be discharged from the hospital until these levels stabilized, but she also prepared me for the fact that they may never stabilize. I am tired, but I put two and two together VERY quickly. What this adds up to is a very sick child before me, one who I may not have around for very long. In addition, it also means that we will be spending more time in the hospital than at home. The first thing that crossed my mind was that Mattie may never see home again. He seems okay with this, since he tells me he doesn't want to leave the hospital. Most likely because he is in pain and feels the hospital can manage it better than we can at home with our limited supply of prescribed narcotics. None the less, this whole revelation for me was extremely upsetting. When I shared this news with Alison, she said that she and the Team would do whatever we needed to recreate Mattie's home within his PICU room. But here is the issue with this, Mattie doesn't seem to mind the fact that he isn't surrounded by his things, this appears to only be weighing me down. The only two things Mattie really wants around him is his cat and a fish. Neither of which will the PICU welcome!

For the first time in weeks, I was able to sit by Mattie's side, and hold his hand and massage his legs. He has been in SUCH intense pain the last two weeks, that he did not want to be touched. So we had several hours of cuddling time today, and within those times, I noticed he became relaxed and peaceful.

We would like to thank the Chiaramonte family for a wonderful home cooked dinner tonight. Thank you so much for the fresh vegetables, salads, and corn! Thank you Liz for also delivering the gifts from Ms. Pollak (Mattie's art teacher) to Mattie tonight.

I am still reeling from the notion that Mattie is quite sick tonight, that the fluid is building up AGAIN in his abdomen (so the paracentesis was a very temporary fix), and we have no idea when and if we are going home. However, in the midst of this sadness, Pam, one of Peter's colleagues from Voxiva stopped by and delivered us a very special ice cream cake, which read, "to Team Mattie." The cake was delicious and we shared it with all of our nurses, who also appreciated this treat. Thank you Pam for the Mattie gifts and the fresh figs from your tree.

I would like to end tonight's posting with two messages. The first one is from my friend, Charlie. Charlie wrote, "Being in constant pain is one of the worst tortures ever created. It is exhausting, debilitating and it simply sucks the energy out of your body. I read Thursday's blog and cried. I just don't understand why Mattie has to suffer this way. I know many of us would willing do much to see him without pain. And this is so horrible for you and Peter as well; to be unable to get Mattie the relief that he so desperately needs. I am relieved that you have him in the hospital for treatment of the pain and the fluid retention and I hope that you have familiar caring staff around you for the holiday. I hear what you are saying about comments regarding God and Mattie's situation. I am not Catholic so I can't speak for or from the Catholic position but I can tell you I believe God can handle your anger, your pain and your frustration. I don't believe you have to go quietly into the night. In my limited ability to visualize God, I see a parent. In that role, just as you do what you can to relieve Mattie's pain and you can accept Mattie's anger, I believe the same is true of God. For now, concentrate on what you do so well; advocating for Mattie and helping him through this. I have prayed and will continue to do so. I sent out a request yesterday for prayers to the many of the people who know about Mattie. I know they responded and when they see this they will again respond. Many thanks also to the people who bring or send meals to Vicki and Peter, were it not for the love and concern of the group I don't know where they would find the energy to continue."

The second message is from Alison (our team Mattie communications and Fund manager). Alison wrote, "I've heard the loss of a child described as the loss of a limb. You go on living, but you will never forget that part of you that is missing. But, you and Mattie are so bonded, I believe you will become as one and he will live on through you. Sounds corny, but death cannot take your bond away."

Thursday, September 3, 2009

Thursday, September 3, 2009

Tonight's Mattie creation is a ceiling tile that he painted in the Lombardi Clinic. Mattie's good buddy, Zachary, gave him a toy train that he brought back from England. Mattie loves this train, and decided to paint a picture of it to put on display. In fact if my memory recalls correctly, Mattie created this tile with his clinic buddy, Maya. This is one of several beautiful ceiling tiles Mattie has painted!

Quote of the day: "While we try to teach our children all about life, our children teach us what life is all about." ~ Angela Schwindt

Wednesday night was an absolute torture. Mattie fell asleep at around midnight, but by 1am, he couldn't get comfortable and was in a lot of pain. I never got any sleep last night and neither did Mattie. I was up and giving Mattie IV morphine every 15 minutes. He would have only about five minutes of pain relief, and then be screaming out in pain. As the morning wore on, I could tell Mattie was getting hotter to the touch, and by 6am, he felt like he was burning up. By this point, I went to wake Peter up and we then took his temperature. Mattie was running an 101 degree fever, and I proceeded to call the HEM/ONC doctor on call. I was VERY tired and very impatient. The doctor did not call me back right away, and so by 6:30am, I called Dr. Shad on her cell phone. Dr. Shad responded and told us to come right into the PICU. So at that point, Peter sat with Mattie, while I scrambled around the house getting ready and packing. Mind you I had just unpacked, since we got home on Wednesday night from the hospital. I was very unhappy and very frustrated, and felt sheer exhaustion.

Riding in the car to the hospital was painful. Every bump and motion made Mattie highly uncomfortable, and the level of tension in our car was so thick you could cut it with a knife. As we were wheeling Mattie toward the PICU, I ran ahead to try to get someone's attention. When I walked into the unit, I saw Debbi (our sedation nurse angel). I told Debbi we really needed Dilaudid, and within minutes, Katie and Christie (Mattie's wonderful HEM/ONC nurses) were delivering this potent pain killer to Mattie. Thankfully! It was only at that point did I see Mattie calm down and experience relief. It was almost like receiving a special gift, the crying and screaming stopped! I have heard so much crying this year, it almost has permanently drowned my ear drums!

We had a visit today from a surgical resident. When he walked in, he introduced himself and wanted to examine Mattie. I was highly confused by his visit, but he said he was asked to consult with us to rule out a bowel obstruction and to offer some suggestions for Mattie's intense bloating (since he said bloating can be a common side effect from surgeries and therefore his team may have some insights on how to deal with the bloating in general). Well I felt bad for this fellow, because between Peter and I we practically chewed his head off. I was confused by his visit because last night's gastroenterologist ensured me that Mattie did not have a bowel obstruction. He told us he wanted us to do a follow up x-ray today and also listened to Mattie's stomach with a stethoscope. Mattie however needs to be in control of the process. He holds the part of the stethoscope that touches his body, and moves it where the doctor tells him to. In fact, Mattie knows where many of his major organs are located in his body. Mattie is now being nicknamed the "little doctor."

Taking an x-ray of Mattie was downright painful to watch and hear. I let Peter take this project on, and I waited in the hallway. Mattie lands up writhing in pain and screaming, because his body is SO full of fluid. So when the tech tries to put the xray film behind him, it is excruciating! Today Mattie looks like a juicy tomato. His stomach is enormous, his face is swollen, and his legs are almost twice their size. The x-ray tech had her hands full with Mattie, but she was lucky enough to have Peter's assistance.

Jey, Mattie's "big brother" came up to visit me today and we were talking about what a special CT tech he has been for Mattie. However, you should know that many techs are not wild about Mattie. Mattie is perceived as difficult and some even are bold enough to think he is spoiled. I personally am offended by those who view Mattie as spoiled. Here is a boy who has been dealing with one of the most virulent forms of cancer, has survived three major surgeries, 11 months of chemotherapy, and a host of psychological consequences of cancer. It seems to me that such a patient deserves to be spoiled and pampered to some extent. It turns out though, as these same techs, have gotten to know Mattie they realize how wrong they have been about him. In fact, many of them now greatly respect Mattie for his forwardness, his ability to advocate for himself, and to get his needs met. Funny how these individuals have been transformed. As Jey rightfully said to me, it is just a matter of hospital employees remembering why they chose to work in a hospital, and to also make the effort to get to know their patients. So true!

Jey came to talk to me today about getting a fish for Mattie. I thank all of you who wrote me about pet fish ideas for Mattie. I told Jey that I would love for Mattie to be able to bring his pet fish into the PICU when he comes to stay over. I think Mattie would find watching the fish and trying to care for it very therapeutic. However, having live animals in the PICU is against hospital policies. I need to talk to Linda about pets and integrating them into Mattie's life here. Jey is a spiritual person, but like myself, is having a very hard time understanding and accepting God's plan for Mattie. It is actually hard to come to peace with this. Jey let me know that when Mattie dies, and my family no longer will be coming to Georgetown, that he plans to change careers. He said he will be unable to work here any longer, we have had that significant of an impact on his life. I was actually very, very touched by Jey's sincerity, commitment, and love for Mattie and my family. I told Jey that meeting Mattie was fate for him, since Mattie was diagnosed with cancer on his father's birthday, July 23.

Peter summed up Mattie's issues to a T today. Mattie is contending with three forms of pain, and somehow it is our responsibility to be able to treat each form so that we can effectively provide some relief to Mattie. The three forms of pain are: 1) anxiety, 2) the cancer itself, and 3) constipation and fluid retention. Naturally these three forms of pain require different treatments, and up until today, we were just throwing pain medications at all the issues, which clearly was ineffective.

To address the pain from the cancer, the HEM/ONC team consulted with Dr. Spivak. Dr. Spivak is the head of pain management at Georgetown Hospital, and he helped us during Mattie's sternotomy in June. Dr. Spivak felt that Morphine was no longer effective for Mattie, and ordered an IV drip of Dilaudid. In addition, we will be increasing the concentration of the fentanyl patch on Mattie's back. My concern however continues to be over medicating Mattie. But Dr. Spivak assured me as the pain subsides from constipation or fluid retention, we can taper down the medications if need be.

We also consulted with Dr. Biel today. Dr. Biel is Mattie's psychiatrist. We discussed Mattie's intense level of anxiety. The littlest things set Mattie off. He is sensitive to touch, and Peter and I can no longer hug or hold Mattie. This is a very counter intuitive feeling, because when your child hurts, you want to hold them. In addition, Mattie is afraid of the infusion of most medications, of doctors and nurses examining him, and the list goes on. He is also extremely frightened of perceived pain. He fears the start of pain and the inability to have relief from it. It is actually a horrendous sight to see your child so anxious. In any case, Dr. Biel prescribed a higher dosage of IV valium for Mattie today and we are giving it to him every two hours. Though Mattie has spent the majority of the day in and out of sleep, we feel this is actually the most humane way to treat him right now, until we get his pain under control. However, now at 11pm, Mattie is up and highly agitated. Somehow the nights are always the WORST for us.

As for the constipation and fluid retention, this is actually more complicated to manage. To handle the constipation, Mattie had to receive Methylnaltraxone today through his leg catheter. We selected the catheter because we thought Mattie would prefer this method to the actual insertion of a needle in his leg. None the less, Mattie put up quite a fight today, and refused to have his leg catheter accessed. Peter and I tried talking with him, rationalizing with him about the importance of the medication, and also trying to normalize his fears. NOTHING worked. So we even attempted giving him a dose of Dilaudid and Valium before attempting to insert the needle into the catheter. But basically nothing we gave Mattie relieved his anxiety over this procedure. When Dr. Biel spoke to Mattie today, he asked him if Mattie was scared or frightened of anything. Mattie answer, "yes." However, the only thing he claims to be frightened of was getting medicine through the leg catheter. As the day wore on, I realized he needed to receive this medication and we couldn't hold it off any longer. So Peter and I played good cop, bad cop. Mattie got frustrated with Peter and threw him out of the room, which was the perfect opportunity for me to work with Mattie and play good cop and get him to comply. Meanwhile, Katie and Christie, Mattie's nurses, were patient and stayed with us throughout this entire ordeal. Mattie did allow Katie to give him the methylnaltraxone through the catheter, but I really wonder how we are supposed to do this every other day at home?! One thing became very evident to me from this experience. Mattie and I most definitely have a special connection. Not just because we are mother and son. Mattie and I think a like, we have similar personalities, and react to things similarly. Under times of stress and chaos, this is actually a blessing, because I know exactly how Mattie is feeling or perceiving things. Mattie and I have survived many things together as he was growing up. His toddler years were far from easy, but we grew together and always respected each other. It is through this respect, which was earned, that I can rationalize with Mattie and most times he will comply with what I am asking him to do. This is a powerful trust and gift to be given.

The xray today was very revealing. In fact, the intestines couldn't be seen in the xray, because the main culprit in the film was fluid. Mattie's body is completely filled with fluid. Where did the fluid come from? Well there are a lot of theories, but the main one is due to Mattie's lack of nutrition. Mattie is unable to take in protein and produce albumin, which is the most abundant blood plasma protein produced in the liver. Albumin is a vital protein that prevents the intestines and blood vessels from leaking fluid into the body cavity. Since Mattie's albumin level is low, fluid is literally leaking from his vessels and accumulating in his body. In fact, if you saw Mattie's body it is almost unrecognizable. He is so swollen, he looks like a round mass rather than a seven year old child. So today, Mattie was given an infusion of albumin, which will hopefully pull the fluids back into his vessels. He was also prescribed Lasix, which is a diuretic, used to flush excess fluids in the body. I am told that it will take almost 72 hours to get Mattie's fluids under control. So we will be here through the weekend. Another holiday spent in the hospital, what a surprise, but we really don't even care any more!


In addition to everything else, Mattie is also on antibiotics for his fever, so right now his body is on overload, and you really have to appreciate what a trooper he is. He is in intense pain, yet for the most part tried to handle it himself, until it became unbearable!

We would like to thank Tamra again for another wonderful lunch. Thank you so much for supporting us during our days in the hospital. It means a great deal to us, and I have appreciated all the fresh vegetables and fruits. As you know I also love the plates and silverware that you bring me. It makes me feel as if I came over and visited with you! Thank you for also supporting my parents and taking them to lunch today! I realize Mattie's illness impacts his grandparents, but Peter and I are too emotionally wiped out to process things for ourselves much less with family members. So I appreciate friends who are willing to support my entire family.

This evening I had the opportunity to talk with Dr. Snyder, Mattie's oncologist. Dr. Snyder is working with a palliative care physician who will be consulting with us on Mattie's case. I welcome this input, because this is what this physician does. He helps people die with dignity and deal with end of life pain. Hopefully we will meet this person next week. Dr. Snyder and I talked about religion and spirituality, since we are both Catholic. She understood how I could feel upset with God, and question why this is happening to my Mattie. It was refreshing to have this dialogue, since typically I am flooded with comments such as this is "God's plan," "Mattie is being called home," "he has a higher calling," and "he has had seven good years." Though all of this may be true, I am not in the place to hear it or accept it now. If you think I am being disrespectful to a higher power, that is not my intention, but I ask you to put yourself in my position, and honesty examine how you feel.

We would like to thank Emily G. for a wonderful dinner. Emily thanks for the support and your generosity! It is greatly appreciated.

Mattie received a gift from Jenny (one of his art therapists) today. She brought him a remote control lochness monster. Even in his tired state, he perked up with this box. Later in the day Linda came by and provided us with a tub of water for Nessy to swim in. Mattie did not have much energy, but he did watch for a few minutes. Definitely not the playful boy we all once knew and loved.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sorry you got what we used to refer to as the "run around" at the hospital on Wednesday. Fortunately, you and Peter are determined and got the information that you needed to make decisions for Mattie. I am grateful that you had the will to ensure you spoke to the right person (Dr Pluta) about Mattie's condition. It takes much more of that stuff (Golytely) than one would think to have the required effects. Although I am sorry you ended up spending Tuesday night at the hospital, I am glad you were surrounded by caring staff like Tricia and others and that you allowed them to help care for you as well as Mattie. I hope Wednesday night at home was calm, that Mattie's system is now functioning again and that his pain medications are doing the job. So today I give you the prayer we recite in the mornings for the functioning of our bodies.





Prayer for the body Blessed are You, our Eternal God, Creator of the Universe, who has made our bodies in wisdom, creating openings, arteries, glands, and organs marvelous in structure, intricate in design. Should but one of them, by being blocked or opened, fail to function, it would be difficult to stand before You. Wondrous Fashioner and Sustainer of life, Source of our health and our strength, we give you thanks and praise."

Wednesday, September 2, 2009

Wednesday, September 2, 2009

Tonight's Mattie creation features a roach made out of model magic! This was created during Mattie roach phase, when he was fascinated by these bugs, and even more excited about scaring me with them!

Quotes of the day (Thanks Charlie and Tad): "I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~ Edward Everett Hale



"I have heard there are troubles of more than one kind.Some come from ahead and some come from behind.But I've bought a big bat. I'm all ready you see.Now my troubles are going to have troubles with me!" ~ Dr. Seuss




Mattie had a relatively peaceful night of sleep, which to me was odd since he was on Golytely, which was expected to flush out his intestines. Peter and I on the other hand did not get to bed until after 1am, and then traffic started showing up in our room by 6:45am. In fact, one resident knocked on the door, but none of us answered. Despite that she came in anyway, and then tapped my knee so I would wake up. After she spoke to me, five minutes later another resident entered and literally did the same thing. The third visitor was a portable x-ray machine, and by that point, I had absolutely had it. I was exhausted, felt and looked like a mess, and had the chills. While Peter helped Mattie with the x-ray in his room, I waited in the hallway, and had a blanket wrapped around myself. Gone are the days when I would wake up and get myself showered and dressed before the residents started out our day. Now I just don't care what I look like at this point.

After this fiasco, I decided to take a shower. I opened up the shared shower door, and lost it. I got a hold of Katie, Mattie's wonderful HEM/ONC nurse, and had her look at the state of affairs in the shower. There was dirty linens and a whole lot of other undesirable things in the shower. Because I am in such a task mode, I put on gloves and was planning on cleaning the shower myself. Katie stopped me and went out to get the cleaning lady for the floor. So I sat and waited for Shirley, one of the women who works hard at cleaning the PICU. I have gotten to know Shirley throughout this year and while she was cleaning the shower, she spoke to me about Mattie. She either knows or can sense that Mattie is very sick and dying, and she told me that God selected me to be Mattie's mom for a reason. She said that not all moms could handle this pressure, and yet I do it each day, and I am not curled up in the corner. She also felt that God needed Mattie, and that my responsibility is to give him back to God. I understood what she was saying and she was trying to help me put this massive loss into perspective, and to see that Mattie has a calling. None the less, I rather Mattie not have a calling, and that he stay with me. I assure you seven years is not long enough even if they were at least six very happy and fun years for Mattie.

What perked up our morning was a visit from Tamra. Thank you Tamra for dropping off breakfast for us. That was a lovely and much appreciated surprise. It started our day off well.

The strategy today was to try to get Mattie discharged from the hospital. However, the first thing we had to do was wean Mattie off of Dilaudid. This is not a pain medication we have access to at home right now. So the doctors decided to up his Morphine dosage today, to see if that helped manage the pain. We have IV Morphine at home, so this would make the transition home easier if Mattie remained on Morphine. I stayed with Mattie, while Peter rounded with the doctors regarding Mattie's case. Peter and I discussed a whole list of issues that we wanted answered by the doctors. However, Peter and I continued to grow more agitated by the lack of specific answers we were receiving about Mattie's constipation and the treatment with Golytely.
We wanted to know how much Golytely was Mattie going to receive and why. We also wanted to know what quantity of stool they were hoping to obtain from Mattie, to indicate that his system was indeed flushed out. None of these questions could be answered, and today alone the Golytely infusion through the NG tube was started and stopped several times. First one resident would say that Mattie needed more Golytely, and then another one would come in and say that she was concerned he was building up too much fluid and the Golytely should be stopped. As the day wore on, our level of frustration increased!

Jey, Mattie's "big brother" came by to visit Mattie. Jey was truly upset by what he saw when he entered Mattie's room. Mattie looked wiped out, was in pain, was vomiting, and clearly looked and acted like a different child. Jey left the room, and minutes later so did I to get a box of tissues. I met Jey and Maria (the PICU administrative assistant) in the hallway, and Jey was moved to tears, and Maria wasn't far behind. Maria jumped up to give me a hug, and they both felt that I should take periodic breaks from Mattie's room because the whole scene is heart breaking and overwhelming. Thank you Jey for bringing Mattie a coloring book and crayons, and for supporting us through this horrific time in our life.

Mattie spent part of the day resting, thanks to his new dosage of Morphine. Mattie now receives 1.5mg of Morphine each hour, and can get a .5mg bolus of Morphine through his pain pump every 15 minutes. I am thrilled this new concentration is working, and the doctors were able to readjust things to ease his pain. While Mattie was resting, things began to hit me. It is moments of silence and down times, when I begin to cry. I was crying about all sorts of things.

Today I got to see Mattie's illness through his nurses eyes. I could see that Katie and Tricia were trying very hard to support us in any way possible. They knew the real feisty Mattie, which is clearly a night and day difference from what sits before us now. Tricia spoke with me and basically told me though she sees what I am going through, she has no idea how we are managing nor how we truly feel. She can try to empathize, but that no one can know the true depths of our devastation. VERY TRUE! I appreciated Tricia acknowledging this. Tricia expressed concern for me because I looked tired and dehydrated. She actually sat me down and made me drink something. Tricia has taken care of me right from the beginning of this whole process, and though I do not take easily to being cared for, I do accept it from Tricia. We sat today, cried, and as always I feel she truly cares about Mattie and my family.

Anna, Mattie's physical therapist, also stopped by to visit today. You may recall that Anna went on a three week honeymoon around the time Mattie's terminal status was diagnosed. When Mattie saw Anna, he told her he did not have the energy for therapy today. Anna certainly knew that, but she came to visit because she too cares and supports our family. Are you seeing a trend here? Yes we are in the hospital, but we are surrounded by people who have become our second family this year.

We would like to thank Tamra for not only a wonderful breakfast, but a delicious lunch. Thank you also for the wonderful desserts! We so appreciate your thoughtfulness and kindness!

It was 4pm, and Peter and I grew concerned because we still did not have a discharged plan in place. So Peter and I strategized how to attack this problem while Mattie was sleeping. In fact, the past day in the hospital has been so peaceful for Mattie in comparison to the nightmare we were living with at home. This peacefulness gave Peter and I a chance to actually talk to each other and eat together. Mattie was too out of it on pain medication, to really object to these things. Peter and I realized we needed to consult with a gastroenterologist directly. So we told Katie our concerns and she found a way to make this happen. Thanks Katie!

At around 6pm today, we met with Dr. Pluta, a gastroenterologist. She spoke to me about Mattie's abdomen x-ray results as well as his treatment for constipation. I told her I wasn't going to leave the hospital today unless she thought that Mattie's constipation was well attacked. Peter and I were frightened that Mattie had a bowel obstruction since he did not urinate or have a bowel movement for over nine hours today. Mind you during that time he received almost 1000ml of fluid. This is a lot of fluid without providing any output. As we sat in Mattie's small PICU room, our minds were racing for explanations and of course we now always think the worst. Dr. Pluta gave me quite an education on Golytely. I thought Mattie was receiving a lot of this medication to clean him out, but it turns out Mattie was NOT getting the therapeutic dosage that would produce any noticeable effects. I was shocked. Mattie was receiving 50ml to 100ml of Golytely an hour through the NG tube. Dr. Pluta said that Mattie would have to receive more than 400mls an hour. I guess I began to wonder why Mattie wasn't given the appropriate dosage to begin with, and of course I began to question why we were hospitalized overnight, if the 100ml dosage per hour was a waste of time. Throughout this conversation, Tricia was right by my side, and advocating for Mattie's comfort, as well as for my need for logical and responsible answers.

Dr. Pluta seemed to think that suppositories and Methylnaltraxone through Mattie's leg catheter, will help prevent constipation into the future. None the less, Mattie still isn't completely flushed out, still has abdominal pain, and is retaining fluids in his face and stomach region. So we continue to monitor him.


Though Mattie was afraid to go home tonight, he eventually conceded. Before we left the hospital, Katie had to extract the NG tube from Mattie stomach, through his nose. Mattie wasn't wild about this, but handled it like a champ. He is so incredibly brave and really complies for the most part with treatment. I am and will always be so proud of him.

We want to thank Dawnee G. for a fantastic dinner! Thank you Dawnee for bringing the food to us at the hospital. We were not able to eat it on the spot since we quickly packed up Mattie and went home, but once settled at home we got to enjoy the splendid Italian meal, so thank you!

Tomorrow we head back to clinic for a blood test and the administration of Avastin. Most likely we will not be able to give Mattie VP-16, oral etoposide. I have come to peace with this, and certainly do not want to keep an NG tube in his body, just to receive a treatment that may not work. This would not be a good quality of life for Mattie. He already has a ton of other physical limitations.

After Mattie's clinic appointment tomorrow, we would like to go to the pet store to pick out a pet fish. I have been opposed to this for so long, especially since we have a cat, but because our cat has been boarded for the year, and also needs surgery now, we are unable to care for her back in our home yet. Mattie wants a pet, and has always wanted a fish. So we are on a mission tomorrow. If any of our readers have some guidance about the type of fish we should get, do not hesitate to e-mail me.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read Tuesday's blog and I thought about how we take the functioning of our bodies for granted. We awaken and assume we can breathe, eat, eliminate, etc naturally and without pain. Then we read what is happening to Mattie and I am left speechless in the face of his suffering and your endurance. I know you are totally exhausted and that this unexpected admission to the hospital along with all the other problems that have arisen are taking their toll on you and Peter. I wish there were something I could do to help relieve some of that burden. In Judaism we are supposed to thank the Lord each morning for the proper functioning of our body parts including our breath. I don't think I will ever take it quite as much for granted again. I will share with you the Jewish prayer for healing that I say daily for Mattie. May the One who was a source of blessing for our ancestors, bring blessings of healing upon Mattie Brown, son of Peter and Vicki, a healing of body and a healing of spirit. May those in whose care they are entrusted be gifted with wisdom and skill, and those who surround them be gifted with love and trust, openness and support in their care. And may they be healed along with all those who are in need. Blessed are You, Source of healing."

Tuesday, September 1, 2009

Tuesday, September 1, 2009

Tonight's Mattie creation features a VW Classic Beetle made out of Legos.

Quote of the day: "The sea rises, the light fails, lovers cling to each other and children cling to us. The moment we cease to hold each other, the moment we break faith with one another, the sea engulfs us and the light goes out." ~ James Arthur Baldwin

I can not believe today is September 1. What on earth happened to the summer? For Peter and I, it will always on some level be the summer of 2008. Though an entire year has flashed before our eyes, this has been a life of torture. My mom made an interesting analogy for me today. She said Peter and I are in essence living in prison. We have NO freedoms, we are observed by many people, we can't provide for our only basic needs, and to add to this form of imprisonment, we are also surrounded by illness and now pending death, an unhealthy lack of sleep, and the emotional toll of fighting cancer. How does a parent come to peace with cancer, a disease taking our only child? How does a parent forget the pain, the screaming, the crying, and the scars inflicted on our child from cancer? How does a parent live on without one's child, or experience joy or happiness again? Peter and I both have NO answers this mystery, but we are certain this is something we will never accept. It will be with us forever, we have seen a type of suffering this year that in my opinion is equivalent to living in a war torn country, we are surrounded by intense and profound devastation.

Monday night was absolutely horrible. Peter and I couldn't manage Mattie's pain. He was up on the hour, needed oxygen, and also went to the bathroom in his bed. So virtually we had no sleep last night. This morning I checked my messages and Debbi, our sedation nurse angel, contacted me to let us know that she wanted to move up today's procedure by an hour. Sounds good in theory, but I was still in my pajamas when I received this message, and basically had 45 minutes to get myself and Mattie together and packed up. Mattie was in extreme pain today, no amount of morphine was helping, and how we actually made it to the hospital in one piece, and Peter did not drive off the road, with all of Mattie's crying and screaming was a feat. These sounds of pain remain in my mind, heart, and soul. When we got to the hospital, Peter went with Mattie to the Lombardi clinic and I went to admissions.

Admissions is always entertaining, and why should today be any different!? Peter had his hands full with Mattie in clinic. By the time I got there, Mattie was in a room, and Jenny was trying to distract Mattie with a remote control dinosaur. Jenny was working hard, and it worked for a while. But the pain unfortunately got the best of Mattie.

Left: Mattie and Jenny, with the remote control dinosaur.

Right: You can see just how wiped out Mattie is from this picture. However despite how AWFUL he felt, he was still trying to manipulate the dinosaur.

It became clear to me though that Mattie couldn't manage the pain, nor wait for the procedure to take place. Roxanne, Mattie's favorite nurse in the Lombardi Clinic, came to our aid. She tracked down Dr. Abu-Ghosh, and Dr. Abu-Ghosh could clearly see that the IV morphine was not cutting it for Mattie, so she ordered him IV Dilaudid. Dilaudid is another opioid given for pain relief. Dilaudid was a God sent, it worked instantaneously. It was actually the drug that got us through this very long day!

Peter, myself, and Linda (Mattie's childlife specialist) escorted Mattie to the PICU procedure room. In the room we met Debbi, Dr. Shad (the director of the Pediatric Lombardi Clinic), and Dr. Bell (today's intensivist). Debbi sedated Mattie with Propofol, and Dr. Shad inserted the enema. She also performed a digital disimpaction, however, what she quickly assessed was that there was nothing in Mattie's rectum. All the constipation was up further in the intestines. So the doctors started mobilizing forces and brainstorming what to do about the problem. Peter and I were observing this, and then the word I have been trying to avoid the entire year came up. Mattie needed a NG feeding tube. I tried to be respectful, but I could see decisions were being made that I wasn't comfortable with. Debbi, in her usual effective and compassionate fashion, stopped the process and asked what I was thinking. I am not sure if doctors are used to the solicitation of parent feedback, but I was truly appreciative of Debbi's level of sensitivity and concern. In fact, I shall never forget Debbi and all she does for Mattie and my family. I always know we have an advocate when Debbi is around.

Peter and I consented to a NG feeding tube, because once I took Mattie's shirt off and saw his stomach region, I was SHOCKED. You need to understand that Peter and I can bearly touch Mattie at home. He is hypersensitive to the touch, so I haven't changed his shirt in days, but under sedation, when we gave him a bath, I got to see how Mattie's body had been transformed. Mattie looked like he was 6 months pregnant, and with that, I realized that drastic measures needed to be undertaken to relieve the stomach pressure and constipation. Debbi inserted the NG tube, and then an x-ray was done to make sure that the tube that goes through the nose and down into the stomach was inserted correctly. Sometimes the tube can go into the lungs rather than the stomach, and this clearly would be a disaster. The x-ray revealed that the tube was in place, and soon there after a substance called Golytely was sent running through the tube. In fact, Mattie will receive 1000ml of this liquid. Golytely may sound familiar to those of you who have ever had a colonoscopy because it is a laxative and it is used to clear the intestine before rectal or bowel examinations. In addition to Golytely, Mattie also had an insuflon (catheter) inserted in his leg and received an injection of methylnaltraxone (which acts to reverse some of the side effects of opioid drugs such as constipation without affecting analgesia or precipitating withdrawals).

My main issue today, which I freely expressed was the fact that we were NOT prepared for the insertion of a NG tube today, and a hospital admission. WE ARE STAYING OVERNIGHT in the PICU, and I writing the blog from room 10 (our first chemo room!). We went in the hospital today for what we thought was going to be a day procedure. Forget the inconvenience to Peter and I, I could deal with that, but what I did not like was that I did not have the opportunity to prepare Mattie for a NG tube. I was worried how he would react to the tube when he work up, after all it hangs from your nose and goes into your stomach. Mattie is highly anxious to be begin with, so any slight change, can be toxic for him. Any case, Debbi understood my concern immediately, and she worked with the doctors to make sure Mattie could continue to receive Dilaudid every hour for pain and comfort. Thank goodness I said something, and thank goodness Debbi found a way to make this happen, otherwise, this would have been a frightening day for us and Mattie. When the sedation wore off, as I suspected, Mattie was completely freaked out by the NG tube, and almost pulled half of it out. We caught it and pushed it back in, and then I had the chance to explain to him why it was needed. He listened, but was clearly scared. You have to be in amazement over Mattie though. He is in such intense pain, can bearly move his body, yet for the most part complies with whatever we tell him. If that is not love and trust, I don't know what is.

None the less, despite being on IV morphine and Dilaudid today, Mattie continues to have pain and to be agitated. He has thrown out all of his nurses from his room, and not to be mean, but because he is SO anxious and doesn't want to be touched or have noise around him. Peter and I must remain near him and quiet.

So far Mattie has had three bowel movements, but we elected to stay over night, because we want to make sure Mattie's system is cleaned out effectively, and we also want him to have access to Dilaudid, something we do not have at home right now. None the less, the passing of stool is VERY messy, and frankly I rather go through tons of hospital sheets than my own. Think about it this way, Mattie's stomach is getting totally flushed out, and we are to expect periodic bouts of uncontrollable diarrhea tonight. Lovely!

Peter and I want to thank the May family for a wonderful lunch of home made carrot soup, salads, and cookies. Liza, I appreciate you feeding us on a very stressful day. We also want to thank the McSlarrow and Wendt families for a very generous dinner. Alison, thanks for ordering the food I seem to crave when under stress. You started my year off with it, and it continues to make a bad, bad day better!

It is our hope that we will be released from the hospital on Wednesday, but we have no idea what the night holds for us. As Norma, our other wonderful sedation nurse said to me tonight, it should be a very *hity night! I told her this is a typical descriptor for our nights, but tonight it was also a very literal description, since we will be picking up a lot of mess. Needless to say we are extremely tired and edgy ourselves.

As I end tonight's posting, I would like to share two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "You and Peter are clearly Mattie's anchors in this life as well as being his safe harbor. I understand what you mean by finding comfort in another's heartbeat; the first rhythm in our lives, all our lives, is our mother's heartbeat. It is the music that we grow and develop to in the womb so it naturally comforts and calms us when we are anxious and in pain. I know you will treasure all of these moments with Mattie, even the most difficult ones but I hope that today's procedures bring him some relief so that you are able to gain a little breathing space. All of us who know that Mattie is headed into the hospital day are praying for him; we all hope he finds relief from pain and less anxiety going forward."

The second message is from one of Mattie's outstanding HEM/ONC nurses, Tricia. Many of you know Tricia to be the nurse who always brings me hot tea in the morning! Tricia wrote, "I can't begin to tell you how painstakingly difficult it is for me to try to find the words to explain just how I feel about the three of you. I knew from the first time I had the privilege of being Mattie's nurse that you were an extraordinary family, full of love, understanding, and patience. It was evident then, just as it always has been that you both would care for Mattie selflessly and with the love and devotion that are a testament to the inner strength that you both possess. I only wish that I could provide comfort for all of you now, as I could during the earlier times. I find myself reminiscing about all of Mattie's antics and the pure joy he felt when he would startle us, then I find myself thinking of what a warrior he has been. He is like both of you, smart, strong and resourceful. I feel like somehow, though I don't know how, that you and Peter will carry each other through to survive this "living hell" because you are also warriors like him. I read the blog religiously and there isn't a second of the day that my thoughts and prayers aren't with you. Vicki, I thank you for the wealth of love and life's lessons that you have shared for they have greatly impacted my life. As a nurse, I concern myself with the physical, psychological and spiritual needs of my patients as well as the needs of their family, and it is at times such as these that I feel so profoundly lost. I will see Mattie always like the sleeping angel I watched over so many times, and I know that he will be the same angel who watches over you one day. I want you to know that Mattie will forever live in my heart and I PRAY EVERYDAY FOR PEACE AND COMFORT FOR ALL OF YOU."

Monday, August 31, 2009

Monday, August 31, 2009

Tonight's Mattie creation features a model magic lion that he sculpted and colored while in the PICU.

Quote of the day: "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~ Pericles



Mattie had a hard night. He went to sleep around 1am, but around 3am, he was talking and screaming loudly in his sleep. I woke up very startled and in a panic. When I went to his side, I could see he was dreaming, however, I was not happy with his breathing pattern. So I grabbed our pulse oximeter machine which measures the oxygen concentration in Mattie's blood. I am glad I did this because normal oxygen concentration is 100, however, Mattie's oxygen level was 88. So I woke Peter up because I did not want to startle him as I turned on our VERY loud oxygen equipment. Basically the oxygen machine that was supplied to us converts our regular air in our house to pure oxygen, which is wonderful, we do not need to replace tanks weekly, none the less when the machine starts up it sounds intimidating.

I slept in Mattie's room until about 8:30am, and then Peter relieved me, and I went to lie down and he stayed with Mattie. Mattie had a rough morning though and did not want to get out of bed. He woke up periodically in INTENSE pain, vomiting, and very tired. He told us he was TOO tired and in pain to get out of his bed and go downstairs. Mattie did not get out of bed until 4pm. There are certainly quiet moments to the day (however, even in those moments, we must be by Mattie's side), but when pain hits, it feels like you are being hit by a tidal wave. Peter and I land up scrambling all over the place to push medications, and to work hard at keeping Mattie calm. It is hard to keep him calm, because with intense pain, naturally comes intense anxiety. Anxiety because you do not know when the pain will subside, and that is down right scary. None the less, Peter and I are tired, and some times in these moments of chaos and panic, we do not always agree on how to handle them. We land up getting upset with ourselves and each other. These moments I would imagine would challenge even those with nerves of steel and who have had a good night's sleep. We haven't had a good night's sleep in over a year, and this nightmare is happening to our son, so to me all bets are off at remaining calm and composed 100% of the time.

We want to thank the McSlarrow family for a VERY generous lunch today. Peter and I weren't expecting lunch at all, and when it arrived it was a lovely and tasty surprise. Alison, I loved the asparagus soup, salads, and vegetarian pizza. The brownies were so appreciated. Thank you for all your incredible support and all you do for us!

At 4pm, I was able to coax Mattie downstairs to the couch. He did not want to hear any noise initially, and he just sat by my side, with his head and ear on my heart. I remember enrolling in an art therapy course at The George Washington University years ago. Our class instructor demonstrated a position of sitting with a sick or dying client that remains with me today. She asked for a student volunteer in the class, and a young girl stood up and approached the professor. The professor had the student sit on the floor. The professor than sat down behind the student. She had the student lean back and put her head on the professor's heart. All of us watching this were first stunned over the intimate and sensitive position being displayed right before our eyes, but as the professor kept on talking we immediately started to feel at peace. She explained that when someone is sick or dying, the fastest way to communicate love, understanding, peace without saying a word is to hear another's heart beat. Needless to say, this visual was so powerful and meaningful, that it has remained with me always. When Mattie naturally found this head on the heart position today, I had the flashback of being a graduate student again, and remembering the intense human connection I witnessed right before my eyes. In a way, the rhythm of the heart is therapeutic and calming, and it definitely worked to calm Mattie down.

We could tell Mattie was in a lot of pain, and though we would love to see him leave the couch, we knew it wasn't going to happen today. In fact, in addition to IV pain meds, Mattie needed several doses of IV Valium to manage his anxiety and fears of pain. To get his mind off of his pain, I asked him if he wanted to see the movie, Mamma Mia. Mattie's friend Claire F. recently gave him this movie, and I thought since Mattie is a big ABBA fan, like myself, he may enjoy this distraction. I had seen the live musical years ago, and I must admit the musical is a thousand times better than the movie, but Mattie and I got a kick out of the movie anyway. Why? Because many of the characters in the movie can't sing. Especially Pierce Brosnan. In fact, each time he sang, Mattie and I would burst out laughing. Mattie and I watched part of the movie with my parents. We all loved watching the movie together, listening to the music, and we also had a good time laughing for a change.

This afternoon Ann called me to check in. I was telling her about Mattie's pain today and also told her that I received an e-mail from Mattie's doctor about the fact that I may need to replace Mattie's insuflon (the leg catheter that is being inserted tomorrow under sedation) every 3 to 4 days at home. Even the thought of doing this to me is hysterical, hysterical because even medical personnel wouldn't do this without sedating Mattie. So it is absurd to think I can do this at home without sedation! Ann then told me about her day, and as she was talking, I found our lives filled with caregiving chores so unbelievable and indescribable that I burst out laughing. I suppose if this pace doesn't make you cry or shut down, the better option is to laugh.

We would like to thank Sara and Michael tonight for a lovely home cooked dinner of paella and shrimp, thank you also for the chocolate you brought back from England. Thank you for all your support and lovely note you wrote us.

As we head into Tuesday, Mattie will arrive at the hospital at noon. I will have to admit him for the day, and his procedures will take place under sedation in the PICU. Mattie will undergo a digital disimpaction, an enema, and the insertion of an insuflon catheter (in order to receive subcutaneous medications through injections). I e-mailed Debbi (our sedation nurse angel) today, and under sedation we will also give Mattie a bath, clip his nails, change his pain patches, and also change his central line dressing. I am truly grateful that Debbi is willing to allow us to do this hygiene maintenance.

Tonight, Mattie continues to remain on the couch as I type the blog. Peter is sitting with Mattie and watching some episodes on the Science channel, but Mattie is moody, edgy, and will not let Peter out of his sight. It is very difficult to remain seated and focused on someone's needs 100% of the time, but Peter continues to do this as do I. I certainly could not care for Mattie by myself. I am grateful that Voxiva, Peter's company, has allowed him this time at home. It actually makes staying at home possible, otherwise I would need the support of the PICU.

I would like to end tonight's posting with a message and a video clip. The first message is from my friend, Charlie. Charlie wrote, "Mattie and his gifts and his sayings are woven into the lives of all who have traversed the lines of this blog. As I look back at people's responses to your postings I see increasing compassion, growing awareness of the fragility of life as well as a desire to connect and offer support to you. I am so sorry to see how difficult everyone's lives have become now as Mattie becomes more anxious and clings ever more tightly to the two of you. I agree with you that Mattie's pain seems to be more than just a problem with his bowels; cancer has a way of overriding all our abilities to control the pain it causes. Hopefully though, the procedure on Tuesday will give him some relief and perhaps he will be willing to move about a bit more. You are absolutely right to sedate Mattie for the procedure; I can't even imagine how anyone would expect an illness traumatized child to cope with another procedure without it. My heart is with you as you face another difficult day, my unshed tears I offer up as a prayer for relief of Mattie's pain."

While watching the movie Mamma Mia today, I heard an ABBA song entitled, "Slipping through my fingers." This song was not in the live musical, so it caught my attention. This is a very moving song because it describes a mother's regret at how quickly her daughter is growing up, and the lack of time they have spent together. This is a song all parents can relate to, because our children grow rapidly right before our eyes. One minute they are babies, and then you blink and they are in school and all grown up. However, in our case, Mattie is truly slipping through our fingers, and to me this song spoke in part to our loss and regret.

http://www.youtube.com/watch?v=xfObZZshunA

Sunday, August 30, 2009

Sunday, August 30, 2009


Tonight's featured Mattie creation is a piece of jewelry he created in the Lombardi Clinic. He designed it for me, and made sure he included cat, bird, and fish beads because he knows I love animals. You may also notice near the pendant (which looks like a crystal), there is a small bead that looks like a piece of dice. Mattie included the dice on my necklace for good luck.


Quote of the day: "The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new." ~ Rajneesh

Mattie did not fall asleep until 2am, and by that time, I had thoroughly had it. I stayed up with him and watched a TV show called, "Its Me or the Dog." Mattie and I get a kick out of these dog training shows, most likely for different reasons. Mattie loves watching the dogs and I love observing how the psychology of the owner's family dynamics impact a dog's behavior, and what I find fascinating is that without a doubt it becomes clear that pets always reflect back their owners' insecurities, anxieties, and feelings.

Mattie was back in his room last night, and I slept on the floor in his room. However, because I wasn't physically near Mattie while he was sleeping, he had many moments of sleeping talking and wake ups. It seemed like I was up every two hours, and by 9:30am, I couldn't take it anymore. Mattie was vomiting, complaining of pain, and I was wiped out. Peter came in to help me, and we settled Mattie back down, and then I headed to my room to sleep for a couple more hours, while Peter stayed in Mattie's room. What an existence!

Mattie woke up at 1pm, but remained on the couch and wanted to watch TV or videos. This daily routine upsets me tremendously. He refuses to take a walk, get fresh air, play, leave the couch, or interact with other people. Tonight I asked him if he wanted to go for a car ride, just to get out of the house and see the city lights. He started screaming at me over this suggestion. He told me his stomach hurt too much for him to move.

I had the opportunity to talk with Dr. Synder, Mattie's oncologist, today. Mattie's doctors are afraid that if we do not quickly address his constipation, he will develop a bowel obstruction. So I discussed our options. Mattie will head to the hospital on Tuesday and will undergo a digital disimpaction. In order to allow a stool to pass, a doctor or nurse inserts a lubricated, gloved finger and attempts to free up the hard stool. This approach usually gets most of the stool out of the way so that the rest can pass normally, providing much-needed relief. In addition to the digital disimpaction, Mattie will also be given an enema and an insuflon will be inserted into his right leg. An insuflon is a unique catheter system used for multiple daily injection therapy. Insuflon enables medication to be administered without repeated punctures of the skin, eliminating the pain and discomfort often associated with injections. However this catheter can only remain in Mattie's leg for 3-5 days, and then it needs to be replaced. Why the need for a catheter/insuflon? Because Mattie is on HIGH dosages of IV pain medication and anti-emetics, these drugs naturally produce constipation. Mattie isn't ingesting anything either, and his system is shutting down. We are beyond the point of oral laxatives or suppositories being useful. Therefore, every other day we will need to inject Methylnaltrexone into the catheter. Methylnaltrexone acts to reverse some of the side effects of opioid drugs such as constipation without affecting analgesia or precipitating withdrawals. I am told the drug works quickly and will bring relieve to Mattie. We shall see, because this is a lot to take on, on Tuesday. However, the ridiculous part to all of this is that insurance will NOT cover the cost of sedation for these procedures. I gather insurance companies feel that a seven year old who has been through hell and is dying and highly anxious should be able to sit still for a disimpaction, an enema, and the insertion of an insuflon. Got to love the thinking or LACK of thinking here! None the less, Peter and I have elected to do this with sedation, whether insurance covers it or not.


Mattie is also scheduled to return to the clinic on Thursday next week, to begin his IV infusion of Avastin, the chemotherapy I told you about last night, and hopefully he will also be able to consume VP-16. However, I am fully prepared to accept that this may not happen. Mattie's doctors seem to think that his intense stomach pains are caused in part by constipation, however, call it a mother's gut instinct, but I feel it is Mattie's cancer that is solely responsible for this intense pain.

Peter and I were dealing with Mattie's care and intense needs all day, and we did not get to eat something until around 4:30pm. By that point, we both felt ill. My parents sat with Mattie inside, while we ate on our deck. Mattie did not want us to leave his side, but it was leave his side or pass out. Mattie refused to acknowledge or talk to my parents, but at least I knew they were inside observing him if he needed help. Our days are long and heart breaking. I had a chance to chat with my parents today, which in my house is a rarity since conversation greatly annoys Mattie. But my mom talked to me about how Mattie's illness has affected her and how it has changed her perspective about her future. At this point in time, it is hard for me to see beyond Peter and I. Because to me, we are the ones most greatly impacted by the loss of Mattie, but I must acknowledge that Mattie has touched many lives, family and friends, and each of us is losing something by his death.

We would like to thank the Chiaramonte family for an amazing home cooked meal tonight. Thank you Liz for the Italian feast and for the Lego board game. Mattie was intrigued by this, and actually played it with Peter on the couch. Thank you for bringing a smile to his face tonight!


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Saturday's blog had so many reflections in it but the one I have to address first is the one that you spoke about with Ann. In my heart I believe, if you have borne and loved a child, you are a mom forever. It doesn't matter whether your child is with you physically or in spirit, once a mother, you never see the world quite the same way again. Even if you are not actively a part of Mattie's school or other mom communities, that doesn't change the person you have grown to be. Life will change, but that is the definition of life; as much as we would like to hold static, we cannot. However, the relationship you have with Mattie, the sacrifices you've made, the bonds you've created cannot be destroyed by death. If you feel it would help you to continue the blog after Mattie's death, you should do so. I know that I for one (as would many others, I'm sure) would be honored to continue to support you through your grief. What's happened this year has touched me so deeply and changed my life in so many ways. I believe I've grown as a counselor and a person as a result of bearing witness to your life since Mattie's diagnosis. I thank you for allowing me this sacred duty and I will be here as long as you wish to continue documenting this journey. I absolutely agree with you about the force of love and care giving in strengthening the physical and emotional health and well being of a person who is ill; I have seen the results on hospital monitors, even a newborn under stress in the ICU will show better vital signs when the baby's parents are there and can make physical contact. It is truly amazing to see. And yet, so often we discount the impact of that bond and the way we institutionalize hospital and nursing home facilities makes maintaining that bond ever more difficult. It certainly runs counter to everything I've learned or experienced first hand. I hope that some day we have the wisdom to change the way we care for others as well as finding ways to be more supportive to those who take on this herculean task."