Saturday, September 6, 2014

Saturday, September 6, 2014

Tonight's picture was taken in October of 2008, right before Mattie's first surgery. He went over to his friend Campbell's house for a play date. Mattie and Campbell met each other in kindergarten and were very close buddies. They could play with each other for hours. Not in front of a TV or with video games. They did not need electronics. Instead, they used their imaginations and creativity and it was a wonderful sight to observe and be a part of. 

Quote of the day: Memories fade but words hang around forever. ~ Daniel H. Wilson

Peter and I went to visit Mattie's tree
at his school today. My faithful readers may recall that Mattie's memorial oak tree was donated to the school by Mattie's class of 2020 and planted in May of 2010. However, to our dismay that beautiful oak died last year around this time of year. You may recall I had blog readers voting last Fall for which tree to replace the oak with and the overwhelming number of votes came in for a Yellowwood Tree! 

This is a photo of the second memorial tree.... Mattie's Yellowwood Tree. How does it look to you??? Rather bare?!!! Mattie was cremated and sits at home with us, which maybe why this tree is such an important symbol to us. We visit this tree every three months and it is a place we go to, to reflect on Mattie's life. 

Unfortunately in my opinion this tree is also dead. This was a very disturbing sight for Peter and I to see today. We went to visit the tree to decorate it with a gold ribbon for childhood cancer awareness month and to also put cars and trains on the tree in honor of Mattie's fifth anniversary of his death on Monday. Given that school is in session on Monday, I prefer to visit the tree when children are not on campus. Which is why we visit on the weekends. But I have to say seeing a dead tree two years in row on the anniversary of Mattie's death is not only symbolic but painful. 

This is a photo of what the state of some of the leaves of the tree look like!

Before I left for Los Angeles, Peter and I painted our kitchen! Around the kitchen I had Mattie's art work hanging all over the place. But it wasn't protected in frames. This week, I changed that. I took his beautiful flowers with me to AC Moore and I figured out a way to mount them onto collage papers and found just the right frames for them! One of the flowers (the black flower on the lower left hand side of the wall) I mounted on spider collage paper because Mattie LOVED bugs. The butterfly print we recently purchased in the Outer Banks. It was designed and signed by a local artist and I took it to AC Moore and picked out the matting and framed it myself. So this is the composition Peter and I created this weekend. I am working on a shadow box to display some of Mattie's other creations to go on top of the butterfly, but that is still a work in progress. 

I leave you tonight with the blog posting from September 6 of 2009. Toward the end of this posting I see I had fears of losing my friends even before Mattie died. I could see that my identity would change, people would perceive me as different, and thereby awkwardness would set in. Now five years later, I can safely say that these fears were well founded and in some cases proved to be true. 
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Blog Posting from September 6, 2009:

Saturday night (I am referring to.... September 5, 2009) was a killer. Mattie was up and very agitated from 9pm until 5am. Peter and I were working hard during that time, and literally were bolusing Mattie with IV dilaudid every 15 minutes. Clearly this was telling us that his fluid in his abdomen was accumulating. It is interesting how Mattie is literally passed out during the day but as the evening approaches he becomes more conscious of his environment. He isn't exactly awake, he is in and out of consciousness. However, at 4am, he asked me to tell him a story. Over the course of the last few months, I have created a whole story series of a young girl, named Goldie, and her friend, Mouse. Goldie and Mouse, clearly are like night and day, yet they have respect, fun, loyalty, and great understanding for each other. Mattie usually asks to hear these stories at night, and he becomes engaged and calm. Peter refers to me as the "Mommy pain killer." So I did tell Mattie a story and then by 5am, I couldn't stand up another minute. So I jumped into Mattie's bed with him and slept at the foot of his bed. It was a comedy show though, because Mattie is now on an air inflated bed, to prevent bed sores. But this bed doesn't like balancing myself and Mattie. As I was lying down, the bed started to deflate on the portion that I was sleeping on, and literally it was like I was sleeping on a metal slab for two hours. None the less, it kept Mattie quiet and calm for two hours, so it was more than worth it in my book.

Peter asked Sarah Marshall, our wonderful HEM/ONC nurse, last night for the CT scan results from Friday. Well I think the results speak volumes to the aggressiveness of Mattie's cancer and the reason for his intense pain near his stomach. Mattie has a tumor in the top of the abdominal cavity that last week measured around 2cm. This week, this tumor is now 6cm in size, and most likely will just continue to grow. I found that incredible growth in one week, and it seems like all resources in Mattie's body are now going into the tiring effort of tumor growth and production. The disease is taking Mattie away from us a little bit each day, and it is most noticeable in his lack of energy, his inability to talk, his pain, and intense fevers (103 degrees!).

At 11:30am, Mattie was wheeled down on his bed to the Interventional Radiology department for the insertion of an abdominal drainage tube. Debbi, our sedation nurse angel, wasn't with us today, and things did not seem to run as smoothly. Debbi knows exactly what is needed and what works for Mattie, and this level of connectiveness puts me at ease. I had the opportunity of meet the attending physician who was going to place the drainage tube into Mattie's abdominal cavity. He started out the informed consent process with me by letting me know that normally such a procedure is not done in children or in people who do not have an infection of the cavity. Mainly because such tubes can cause infections in patients, so why insert a tube if you don't have an infection!? In addition, he told me that during the procedure Mattie could bleed out or they could injure an organ. Lovely! By the time he finished with me, I wanted to simply say.... ARE YOU KIDDING ME?! My son is going to die, and you are performing a procedure to relieve pain, do you think I want to hear about these potential risks?! Definitely NOT! We live risk each and every day. It is this level of insensitivity within the medical community that I find shocking and SO irritating.

While Mattie was under sedation, I had the opportunity to talk with Debbi (our sedation nurse angel) by phone. Debbi reads the blog each day, and she was intrigued by the fact that Mattie did not want to go home, and elected to stay in the PICU. It is a fascinating decision, I agree, especially since Mattie was always a home body. He loved being at home, and doing projects at home. Even during his treatment, he always looked forward to returning home and being surrounded by his things! But I noticed even before we entered the hospital this week, that Mattie was NO longer interested in his "things." Even things that were once super important to him. He wasn't even interested in opening up packages that came in the mail. This caught my attention immediately. Debbi told me that Mattie most likely doesn't want to return home because he doesn't want to die there. That Mattie doesn't want to die at home because he knows this would crush Peter and I. I think living in our current home will always be difficult now because every corner of it will remind me of Mattie, but having him die in my home would be particularly difficult for me. When Debbi shared her thoughts with me, I told her that I honestly hadn't looked at Mattie's actions this way, because I thought that this level of reasoning was far more mature than what I would expect from a seven year old. None the less, as Debbi was talking, something struck me immediately. Mattie has been in the hospital since Tuesday, and is getting sicker and weaker. Yet he isn't asking me a single question. He isn't asking me why we are doing scans or procedures! You need to understand that throughout this year, Mattie played an active role in his treatment and would ask solid questions of us. But now there is NOTHING! No questions. I chalked this up to the simple fact that he is on such high doses of pain medications, so I figured he just was too out of it, to ask questions. However, Mattie does have lucid moments, at like 4am. But even at that hour, he asks me nothing. Debbi's response was, "Vicki, that is because Mattie knows he is dying" and he just doesn't want to talk about it. In a way, I suppose Mattie doesn't want to think about life without Peter and I, nor does he want us to reflect on it. I still have trouble accepting that all of this is going on in Mattie's head, but as Debbi and even Ann told me today, this is MATTIE BROWN! Mattie is capable of anything, and if this is true, then what a remarkable young little boy I have. A little boy that even in the end is worried about his parents and how we will live life without him. I have debated talking to Mattie about what is happening and how to say good-bye. But in all reality, Mattie is making this easy for us, we are following his cues. Saying good-bye can't be about Peter and I, it has to be what is peaceful for Mattie. Perhaps our way of saying good-bye to him, in a way he can accept, is to continue to be physically and emotional present, to advocate for his needs, and to remind him always that we love him and are here for him. Mattie does open his eyes periodically now and then to tell Peter and I that he loves us. He never did this before, so I am beginning to see that Debbi maybe onto something.

The placement of the drainage tube went very well today, and it is working like a charm. So far the tube has removed over a liter of fluid. However, Mattie's body is leaking out more fluid than he is taking in through IVs. This is causing his blood to clot, and Mattie is being given Vitamin K shots to thin the blood, and was also given Fresh Frozen Plasma (Plasma transfusion is indicated in patients with documented coagulation factor deficiencies) transfusion. There was talk of inserting a catheter in Mattie's bladder because he is not urinating very frequently, however, I refused that option tonight because I did not want a catheter placed in Mattie without sedation. Debbi has reminded me, and I am happy she has, that I have a right as a parent to refuse any treatment that will cause pain, and I can demand the use of sedation. That piece of information was very empowering!

Peter remained with Mattie, had lunch, and then got a chance to take a brief and overdue nap. Kathleen, Mattie's wonderful HEM/ONC nurse, told me she tried not to enter the room much, so that the boys could sleep! I appreciated that! Meanwhile, I sat outside in the hospital rose garden with Ann. I had lunch, got to feel the sunshine, and a chance to chat and share my thoughts and feelings with a person who has become a very central part of my life. Ann realizes one of my concerns is the need to keep Mattie's memory and spirit alive. So today we talked about establishing a foundation or research center for osteosarcoma. We also talked about ways to memorialize Mattie for myself. If we decide to cremate Mattie, there is a company that will actually create diamond rings or necklaces from 8 ounces of the ashes. The company can remove the carbon components from the ashes to actually create a diamond. I am sure there are many other special ways to memorialize a loved one, but this one really spoke to me, because nothing is harder or more brilliant than a diamond, and this would always keep Mattie with me. I know other osteo families read this blog, which is why I plan on sharing this link: http://www.lifegem.com/

After I spoke with Ann, I started to try to rationalize that perhaps life was worth living after Mattie's death. My mission is to enlighten others about osteosarcoma, to help families stricken by this horrible disease, and to keep Mattie's spirit and love alive always. Getting me to think beyond Mattie's death isn't easy, nor do I like to go there, but Ann is able to sit there with me, despite what comes out of my mouth.

In the afternoon, I also met up with my parents at the hospital. My parents purchased Mattie something he really wanted. As I clear all of this with Linda, I will fill you in as to what it is, but for now, suffice it to say, when Mattie wakes up periodically he enjoys the sight he is seeing. At this point anything that brings Mattie happiness I love. If you try to take it away from Mattie, you will have to go through me, and I assure you I can be difficult if you mess with Mattie and his happiness. Stay tuned for more details, but my consistent readers can probably already guess what the gift is! (Note: I am talking about a FISH (9/6/2014) I had the opportunity to sit and chat with my parents today, and I guess as I start to process Mattie's illness and pending death, I am moving from intense anger to now more sadness.

We would like to thank the Coopers tonight for a lovely homemade dinner. Christine, I appreciate your e-mail tonight. It meant a great deal to me, and it is hard to accept that our boys won't be in class together or playing again, and part of my own insecurities that I face is how can my friendships remain strong and alive, if Mattie is not part of the equation? After all, through Mattie I met some wonderful moms, but if I am not a mom, and do not have a child to take on a play date, what happens to these friendships? Though Christine wasn't answering that question tonight in her e-mail (because I did not pose it to her), her e-mail did provide me with peace and comfort.

Friday, September 5, 2014

Friday, September 5, 2014

Tonight's picture was taken in January of 2009. As you can see Mattie made a smiling flower out of a connecting toy that he received as a gift! However, what captures my attention was his wonderful smile and cute head. Mattie was not intimidated in the least by being bald. He did not seem to mind that he had no hair and did not care what others thought about this notion either. You really had to admire his confidence regarding this and though I tried to cover his head in public to protect him from the cold and stares, Mattie usually tore his hat right off his head. 


Quote of the day: Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~ Richard Puz


This morning I was invited to attend a Grand Rounds Lecture at the Georgetown University Hospital entitled, "Compassionate Honesty: Integrating Hopes, Emotions, and Duties when Confronting Serious Illness." The presenter was Dr. Chris Feudtner who is an attending physician and research director at the Children's Hospital of Philadelphia. Given the time of year, this is a challenging topic for me to sit through and then being in a room of doctors has a way of setting me off emotionally! 

When I entered the auditorium this morning, I got the opportunity to see many familiar faces who either cared for Mattie or helped to support us. I first chatted with Catherine, our case manager, I sat next to Debbi, our sedation nurse angel, and saw Denise, Mattie's social worker. I saw many other Georgetown folks we knew as well, which is ironic. We only lived on campus for 14 months, but in so many ways it seemed like YEARS! It was such an intense part of our lives. 

Dr. Feudtner was a powerful and passionate speaker! What caught my attention was his empathy and his ability to emote. Which is rather unusual for a medical doctor. He first shared stories about his patients and really directed his opening comments to the medical students in the first couple of rows. He wanted to impress upon them the importance of three things when working with patients and their families: emoting, thinking and relating! He feels you need to use all three skills to effectively apply medicine! What a concept! I couldn't agree more. If you do not listen and relate to your patient, then you can do all the thinking in the world, you will be missing a good 90% of what is going on with the body in front of you! His stories illustrated just this and the key word was to be authentic with one's patients. 

I think it is hard to be authentic with patients if medical students are not trained in the art of communication, are encouraged to dialogue with patients, and are given the skills to manage difficult emotional scenarios. This is something I discussed with Dr. Feudtner after the presentation was over, especially since upon my observation I could see that the medical students were visibly uncomfortable with this whole dialogue of emotional expectations of their role. 

Dr. Feudtner also highlighted some of his research with the audience. Parents of seriously ill children make difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. Such a process of transitioning from one set of goals to another is called regoaling. The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect (in essence the good and the bad in their situation) and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. 

This whole discussion of regoaling and hopeful patterns are incredibly timed with tonight's September 5, 2009 posting below. As you read back in time, you will see how Peter and I had a mind set change. Just like the one Feudtner's research is referring to! We went from being parents who were dead set on treating Mattie and finding a cure, and then we had to come to the realization that this wasn't going to happen, and instead we had to set another goal and establish new hopes! In fact, throughout Mattie's treatment our HOPES constantly changed! They changed from finding a cure, to managing the disease process, to eventually managing pain and finding a way for Mattie to die a humane death. Therefore I gather we would be considered by Feudtner to be "high hope parents" since we appeared to be able to transition from one set of goals (helping Mattie recover for example) to another (keeping him comfortable).

Attending Grand Rounds was informative on many levels but given the topic, how it was discussed, and the nature of the audience, some how many things were triggered for me today. After the presentation was over I literally was in a state. I cried for about two hours on and off and felt like Alice in Wonderland who could have been washed away in a sea of tears! There was something about today that reminded me on a very real level once again that I was a mom, that Mattie did exist in our lives, and our reality was beyond overwhelming.

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Blog Posting from September 5, 2009:

Today was another challenging day, because it became clear to us that Mattie's body is shutting down, the cancer is taking over, and we most likely will not have Mattie in our lives for much longer. This was a realization that I wasn't prepared for today. In fact, at first this hit me like a ton of bricks, and there were moments this morning where I just sat, felt very depressed and cried.

Peter had the chance to talk to Dr. Shad, the director of the Pediatric Lombardi Center, and she told Peter that there is no certainty as to what will happen next in Mattie's condition. We all know his body continues to accumulate fluid in his stomach cavity, but what is causing this swelling? Well today we concluded that the fluid build up is due to disease progression and not because there is an imbalance in albumin (protein) in the body. Clearly we could do something about a protein imbalance, but there is nothing we can do about disease progression. Though we drained 1.5 liters of fluid from Mattie yesterday, we had to do another paracentesis tonight as well. Today's paracentesis removed 1.25 liters. This procedure was performed in Mattie's room and a catheter was also inserted in his abdomen in case pressure and fluid build up and need to be drained from his stomach tonight. On Sunday, Mattie is scheduled to have a drainage tube inserted into his stomach cavity, so that the fluid can naturally drain from the tube into a bag, without having to puncture his cavity with a needle each time. Despite taking out 1.25 liters, his stomach region still looks incredibly swollen. This worries me.

One thing is VERY clear, Mattie is no longer the same boy we brought to the hospital even a couple of days ago. Mattie is lifeless, sleeps most of the day, and when he is not sleeping, he is crying and screaming in pain. He NO LONGER plays, talks, and watches videos. He is clearly on the verge of joining another world, and we are unfortunately watching this and are unable to do a darn things about it. I had the opportunity to bump into Debbi (our sedation nurse angel) while I was walking around outside the hospital. I confronted Debbi today because I noticed yesterday after the paracentesis, she did not seem as elated as I was that 1.5 liters or fluid were removed from Mattie. I made a mental note of this, and I reflected on it for the rest of the night. Why did she react this way? Because Debbi is a major advocate of ours, if something was a good thing, she would have been celebrating with us, but she wasn't. I told Debbi that I know Mattie's body is shutting down and we talked about how Mattie is indeed dying, and is losing ground VERY quickly. In fact, we estimate that Mattie will be with us for perhaps a couple of weeks only.

Though Debbi doesn't work on Saturdays, she came by to visit with Mattie and also gave him her desk clock which has a mechanical swimming fish in it. Peter replaced the battery in Debbi's clock and Mattie is totally intrigued by the floating sea turtle that serves as the second hand on the clock! Thanks Debbi! After I spoke with Debbi, I realized my mission is not done for Mattie. So I pulled it together, because whatever energy I would be putting into being depressed and hysterical, I need to devote to managing Mattie's pain and advocating for him so that we are NOT prolonging death. This is definitely a new philosophy for us, because Peter and I in the past have consented to ALL sorts of treatment, blood transfusions, and testing. But now we have to think through every decision, and ask why we are electing to do something? Are we doing it for our own needs or are we doing things that are in Mattie's best interest, which means no invasive testing or treatments that will prolong his agony. I can assure you it is almost impossible to accept that we are now making decisions to end Mattie's life peacefully and quickly. In fact, tomorrow we have been asked to draft up some advanced directives for Mattie's care. Such things as do we give the hospital permission to use dialysis and breathing machines, to resuscitate Mattie if his breathing or heartbeat stops, and the administration of a tube feeding. Though we know what we have to do, it is hard to admit that we REFUSE all these options.

I am sure some of our readers are processing what is going on and you are asking yourself, why on earth do we want to spend our last remaining days with Mattie in the hospital? Well of course from our adult perspective dying in familiar surroundings seems peaceful, and the right thing to do! However, here is the thing. Mattie WANTS to be in the PICU. This is his decision. Peter and I took Mattie home on Wednesday, despite the fact that he did not want to leave the hospital. As you know on Thursday we had to readmit Mattie because of intense pain. When I did this, Mattie said, "I told you I did not want to go home. So we are not leaving the hospital until I am ready." Peter and I must respect Mattie's desire right now, despite our own needs or picture of what saying good-bye to him looks like. Of course being in the hospital is no picnic by any stretch of the imagination (living in any institution limits your freedoms), but I must remind you that we have lived in the PICU for 11 months, and in a way it has become a place we are familiar with and consider our medical home. None the less, it is VERY challenging living in a two by four of a room, and having to share a bathroom with another family during this highly stressful time.

Ann was following Mattie's progress today, and came by to visit me and support me through this emotionally challenging day. I appreciated her presence and fired so many thoughts at her, but she never skipped a beat. One of the many things I struggle with is what to do with Mattie's body, bury him or cremate him. Certainly neither are a pleasant thought, and I grew up in a traditional Catholic family, where wakes and burials were the norm. Yet, a part of me can't imagine burying Mattie. I guess for several reasons. The first is I want him physically closer to me, and second, if I bury him in a cemetery, I will feel very guilty if I do not visit him every day. How to come to peace with this decision is not an easy one for me. I also told Ann that I am particularly saddened by the fact that Peter, Mattie, and I never had some family time after treatment to just enjoy each other's company. We never got to fulfill a Make a Wish Foundation wish for Mattie either. I plan on letting the Lombardi Clinic social workers know that waiting to get a wish granted until treatment is over is a BAD idea, because with cancer you never know what tomorrow will hold. In addition, Mattie's disease progression has hit him hard. I am not sure what I thought preparing for death was going to look like, but I can tell you it is NOT a magical moment, where you intimately talk about life and your love for each other. I suppose this can happen with certain diseases, but with Mattie, he spends most of his time out of it with pain medications, and therefore Peter and I sit in silence in Mattie's room for most of our days. One or two days of this is hard, but day in and day out of this is heart breaking and unnatural. It kills the human spirit.

Later in the afternoon, my parents came by to visit with us. My mom was in the hallway with me observing the paracentesis procedure being performed on Mattie. My parents also brought me some lotions and other things to help perk me up. Though my mom admits, there is no possible gift right now that will bring such happiness. It just doesn't exist, and she is correct! My mom can't get over the dramatic decline in Mattie in just three weeks. She has seen it unfold and it is hard to believe that three weeks ago, Mattie could leave the house, play, and talk with us.

Tonight, Mattie woke up from his sedation from the paracentesis, and wanted to watch one of our favorite dog shows, "It is me of the dog." He can bearly keep his eyes open, and his speech is slurred, but he attempted to watch. As the evening progresses he continues to be in pain and anxious. But really is in and out of consciousness.

Tricia was Mattie's nurse today, and she worked extremely hard to support Mattie, as well as us. Tonight, Sarah Marshall is Mattie's nurse. Sarah Marshall was talking to Mattie and she told Mattie a story about how her brothers would sometimes pick on her when she was growing up. Mattie asked Sarah Marshall why they would do this to her, and that teasing her wasn't nice. Sarah Marshall agreed, and then Mattie took the conversation to the next level. He told us he can't walk or do anything for himself, so what would happen if someone picked on him!? We told him that wouldn't happen, and Sarah Marshall told him that this person would have to go through her first! He seemed happy with that response.

Please keep us in your thoughts and prayers. This is the toughest thing we have been asked to do this year, or perhaps the toughest thing in our lifetime. I appreciate all your e-mails of support, they truly make a big difference to my daily existence.

Thursday, September 4, 2014

Thursday, September 4, 2014

Tonight's picture was taken on May 23 of 2009. That weekend Mattie got it in his head that he wanted to design an alligator out of Legos. Except we did not have enough GREEN Lego bricks. So literally Peter jumped into the car and drove out to the Lego store and came back with enough to design the beautiful creature you see here!!! Of course nothing about just jumping out from the hospital to the Lego store was normal! Living in such chaos was anything but NORMAL. We were living on very little sleep, under great duress, for such a prolonged period of time! Yet Peter and I were determined to function to make Mattie's life as bearable and comfortable as possible, which was not easy given the circumstances and at times some of the toxic people we had the misfortune of dealing with.  


Quote of the day: No matter how much suffering you went through, you never wanted to let go of those memories. ~ Haruki Murakami

As the fifth anniversary of Mattie's death approaches on Monday, I think it is important to take a look back in time. The posting below is what I wrote on September 4 of 2009. I think it is important to reflect back in time to read what was going on in Mattie's life and in ours. As you read my words, I realize they may be just that.... words that depict a story, but for me, they are snapshots of the reality that lives within me. It helps to explain what motivates Peter and I and why we can never forget. 

One thing you should note when reading this posting is that on August 5th, we did learn through scanning that Mattie's condition was terminal. However, we did not know exactly what that meant. We did not know how much time Mattie actually had with us! In fact, as you read this posting below, you will see that I did not know that I only had DAYS left with Mattie. Mainly because the doctors did not tell me Mattie was dying. I only got a clue when two of Mattie's nurses confronted me and told me!

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The blog from September 4, 2009:

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 specialties 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.

Wednesday, September 3, 2014

Wednesday, September 3, 2014

Tonight's picture was taken in August of 2007. After a full day sight seeing, we came back to the hotel and Peter and Mattie went into the pool together. Mattie had really started to become better acclimated to water by that point. I wouldn't say he loved to swim, but he was learning through lessons. He wanted the time to show Peter what he had been learning and to also to just play in the water, and this afternoon down time gave him that opportunity. 


Quote of the day: When everything seems to be going against you, remember that the airplane takes off against the wind, not with it. ~ Henry Ford


While I was gone in Los Angeles, Peter decided to replace two of the light fixtures in our hallways. This is something we had talked about, but I did not realize he was going to do this while I was gone. When I walked in the door last night, despite being tired, I could instantly see a difference in the quality of light. It really makes a huge difference. Now with our walls painted beautiful colors and these subtly lights, things look aglow! It just changes the whole character and quality of our space. The next project is what is going on our walls. Over the years, Peter has taken some glorious photos of places we have been together as well as photos of stunning flowers, the sun, and the moon. So my hope is to select some of these top photos that we both agree upon and frame them so we can display them on our walls! 

Despite being on Los Angeles time, I got a lot accomplished chore wise. I spent a good portion of time in my garden and I loved the wonderful humid weather. I know people may not be happy with our heat wave, but I am in love with it! It could stay this temperature year round in my book! While working by the computer today, I actually had the air conditioning off and the windows open. With the window open, I could hear my friend Maria calling out my name to welcome me back home. It was nice to see her and to have someone check on me! This evening Peter took me out to dinner as a welcome back treat, which was lovely, as it gave us time to walk, talk, and reconnect!

Tuesday, September 2, 2014

Tuesday, September 2, 2014 -- Mattie died 260 weeks ago today.

Tonight's picture was taken in August of 2007. This was another photo in a series of "surreys with a fringe on top" that I posted from our trip to Coronado, California. This bicycle was smaller and more manageable to pedal than the one in the previous photo. Yet still not exactly user friendly! But easier than the one for five people which felt like we were trying to pedal a car up a mountain rather than a bicycle! Mattie just loved the whole experience and he enjoyed being outdoors and in wide open spaces. 





Quote of the day: The battles that count aren't the ones for gold medals. The struggles within yourself–the invisible battles inside all of us–that’s where it’s at. ~ Jesse Owens

I am safely back in Washington, DC tonight. My parents and I said our good-byes at the airport this morning, which of course is never easy. It is not a good feeling to leave a family member behind on either coast. But I would say the flight home was nothing like what I was expecting it to be!

It is funny how a distraction on a flight can truly side track you from the actual flight itself! While waiting to board the flight, I noticed an older adult sitting at the gate. He got up a couple of times and he appeared to be asking other passengers questions, but I did not make much out of it, other than I noted it! As we boarded I lost track of him for a while, until he boarded the plane at the last few minutes and he sat right next to me. He came on with a big piece of luggage and did not know what to do with it. So the flight attendant put it in first class and then he sat next to me and began talking to my other seat mate by the window. He talked her ear off for a good hour! Which I wasn't thrilled about because I really do not like hearing any talking while flying... remember I do NOT like to fly in general!

But after he tired out my seat mate, he moved onto me! Keep in mind at that point, I had no idea the extent of the situation at hand because I wasn't really engaged or paying attention. However, once I began talking to Roger, I quickly surmised that Roger is 81 and has dementia and really should NOT be traveling alone! Roger couldn't keep track of his money, passport, and his boarding passes. It turns out Roger missed his first flight to Newark, which is why they put him on my flight. How did he miss his flight? Well he was sitting in the terminal but did not hear the PA system announce his flight, so it took off without him! He was literally sitting there at the gate and it left without him! The problem was Roger wasn't doing domestic travel, his final destination was Scotland and worse the airline did not know of his condition so NO one was escorting him from plane to plane. It was a nightmare and truly heart breaking to see. 

I not only got to know Roger, but I got to know Margaret, my other seat mate from Brisbane, Australia. Another kind soul who helped me help Roger. Together we brainstormed how we were going to get Roger to his final destination, which wasn't easy because once he landed in Dulles at 9pm, he had to catch his next flight at 9:50pm to London! Assuming he made that, then he had a third flight from London to Scotland to catch! Roger was a sweet man but like a child, unable to make decisions and in need of direction and guidance. In between making travel arrangements for Roger, I got to hear about his life, how he lived in Alaska, California, and even Iran. He did building contracts in each of these places for the Government. He led a fascinating life and had very interesting experiences, for the parts he remembered. He wanted to know about my life and whether it is my personality or my training, like all mental health professionals I usually share bits and pieces but NOT much about myself. Nonetheless, he was intrigued to know that I was a therapist and he noticed my wedding ring and said Peter was a lucky man because he kept saying that he felt very cared for and landed up sitting in the right row of the airplane! So he was wise in many ways and intuitive, because he had the sense to know that not everyone around him would be caring for him like me! 

When the plane landed, I stayed with Roger to make sure that the flight attendants knew that I was on his case. In fact I flagged the purser in flight and ordered a wheelchair for Roger to meet him at Dulles to take him from the gate of our flight to the gate of his next flight. Since I suspected where our domestic flight landed would be a completely different terminal from where his International flight would be taking off from (which was correct!) and there would be NO WAY he would make that connection in 50 minutes! While I was waiting on the plane with him, I called his friend in California. The only phone number he literally had in his wallet (he had NO PHONE with him!!). I asked his friend for the phone number of his daughter in Scotland and fortunately she had it! From that, I literally called Scotland and spoke to Roger's family to let them know that Roger missed his flight and to give them all his new information and to let them know the status of what was going on!

When I got off the phone, Roger was out of the plane bathroom by this point and retrieved his luggage. I then spoke to the flight attendants with Roger right by my side while waiting for the wheelchair. The purser asked me if I had seen what was going on in the back of the plane during the flight! I said NO because I was too busy in the front of the plane. She then continued to tell me the story about the passenger with a golden retriever. When passengers were deplaning, I did see one leave with a golden retriever, but I assumed she had issues with vision. Bad assumption on my part. The passenger has anxiety issues and literally this dog was sitting on the passenger's lap for the entire flight to aid with these issues. Now I am the queen of anxiety but frankly I am not sure if I could handle being on a flight with a golden retriever right next to me on someone's lap! Did you know this could even happen on a plane?!!

The purser told me she sees sad sights like Roger every day on her job and they are just heart breaking. Yet when she sees people like me who care for fellow passengers it restores her faith and hope in people. The purser and flight attendants told me to leave after I waited thirty minutes, the plane was totally empty by that point. They felt they had it under control, after I explained the extent of the problem and the mental confusion. When I told Roger that I was leaving and that he could trust these ladies to get him to his next destination, he stood up and gave me a big hug and thanked me for being so kind to him and caring. Not how I thought coming home was going to be like, but I am quite sure I won't be forgetting Roger any time soon or how wonderful the flight attendants on United Airlines were when I brought all of this to their attention tonight!

Meanwhile, as soon as I landed Peter expected to see me right away! But when I landed I text messaged him and told him about Roger. Peter is used to me by now. I gather my story about Roger did not surprise him in the least and he knew I had to do what I thought was right to do! Of course that caused me to be at the airport an extra hour than I had to be and my desire to help people impacts others. But Peter knows after all these years with me, this is not something he is going to change about me. Perhaps it is one of the things one finds endearing, I don't know!

Monday, September 1, 2014

Monday, September 1, 2014

Tonight's picture was taken in August of 2007. This was one of my favorite photos of Mattie. I still remember taking it! Outside of our hotel was this fountain. Surrounding the fountain were flamingos. Mattie decided he wanted to pose for a photo while acting just like a flamingo, with one leg up! I introduce you to Flamingo Mattie!


Quote of the day: I have been impressed with the urgency of doing. Knowing is not enough; we must apply. Being willing is not enough; we must do. ~ Leonardo da Vinci

It is hard to believe that today is September 1! All I can say is where on earth did the summer go? One minute I was planning the Foundation's Walk in May and the next minute I seemed to be glued to the computer working on a book chapter.... and well that was the summer! The summer seemed to be one task, after the other, after the other. 

I remember growing up as a child, I longed for summer vacation. Time off from school, meant all sorts of adventures and potentially fun activities. However as we age I suppose reality sets in. Then if you are lucky to have children in your adult life, in a way you get to relive some of the fun you had as a child. Or perhaps you relive it in a different way. You get to see the world through the eye's of your child. Which in a way is even more special and fun! As adults we can get stuck in our ways, in our routines, and how we want things done. Children are far more flexible and are always up for adventures and for pulling us out of our comfort zone. Or at least Mattie excelled at doing this for me! He had a way of making the ordinary seem quite extraordinary and different! These are just some of the wonderful things I miss about Mattie's presence in my life. Mattie forced me to slow down and to experience things from his point of view and in essence at times it almost felt like I journeyed back to the summers when I was a child. 

As September rolls upon us, I have a feeling I will always be cognizant of the fact that school is about to begin. Another school year, in which Mattie will not be right along side his classmates. Mattie's friends continue to grow, mature, and reach high school age, but for me, Mattie is still in kindergarten. I am forever stuck, with Mattie at age 6! Whereas my friends' children are now 12 years old. It is a very strange time continuum to be living in, and somehow with today being Labor Day, I have a feeling there are many people not exactly happy. Certainly for different reasons. Labor Day signifies the return to school for so many teachers and students tomorrow! Regardless of how much someone may like to teach, NO ONE likes to say good bye to summer vacation! It is just painful!

I am signing off from Los Angeles! Tomorrow I return to Washington, DC. I will be leaving behind the glorious sunshine and blue skies. It is hard to imagine not seeing one grey sky or drop of rain in two weeks! Totally unheard of in DC! 

Sunday, August 31, 2014

Sunday, August 31, 2014

Tonight's picture was taken in August of 2007. This was the summer that Mattie rode every roller coaster possible at Lego Land! Mattie LOVED roller coasters. He fell in love with them at Dutch Wonderland, when he rode on his first coaster. But at Lego Land, we couldn't get him off of them. I have never been on a roller coaster in my life, but fortunately Peter also loves them and together they spent the day together having a blast! When they stopped moving we did the other wonderful Lego Land components of the park! I would have to say Lego Land was one of Mattie's favorite theme parks! No surprise since Legos could have been his all time favorite toy (right up there with hot wheels and trains)!

Quote of the day: We must believe that we are gifted for something, and that this thing, at whatever cost, must be attained. ~ Marie Curie


It has been a busy day for me. I have been helping my parents with various things around their home and for the last few days we have been reorganizing my dad's in-home office. This project has involved moving desks, chairs, computers, rehanging pictures, moving all sorts of other furniture, and the list goes on. Somehow when you start one clean out project it has a way of carrying over into other areas. So we have been busy together but we have made great progress. 

In the midst of projects, we also got out today and had a lovely lunch outdoors and walked around. It was another glorious weather day here and it is hard to believe in the two weeks that I have been here I haven't experienced ONE grey day! Not one drop of rain!!! It is remarkable, especially coming from Washington, DC. Which to me is gray all so many days!

Meanwhile this evening, Peter sent me this photo from Washington, DC! It was a reminder to me of the fantastic summer storms we have due to the heat and humidity! It looks quite different from the clear blue skies of Los Angeles! Something I will be returning to very shortly.